I went to my first three month blood test today. I am at Rai 0. I feel great. My WBC and Lymphocytes doubled in 3 months. I am starting V and O on Monday. I am pissed and scared. I had 3 months on Wait and Watch. Chronic was supposed to mean 3 years or 10 years before treatment. My wife and I are driving to school to tell my son. I have never been so scared or angry. 😠 I am only 54.
Devastated: I went to my first three month blood... - CLL Support
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•
Howdy… I know how you feel. I was diagnosed at 58 and went straight into treatment. It took a few weeks for me to adjust. The good news, is that the treatments are very effective. I had a fixed duration A&O treatment and have been uMRD for over a year now without any medication. And I feel totally normal. I think the V&O offers an even more durable remission than the A&O. There will likely be 2nd line treatments available if you ever need it. I think AI is really going to accelerate the R&D process so I am very optimistic. know it’s difficult in the beginning, but it turns out that it wasn’t that life changing for me. I feel great and do everything that I used to do and no longer fear things that I previously did. There really is a lot to be hopeful about. I wish you well in your V&O treatment.
I don't know if I missed any previous posts of yours, but what were the WBC and ALC counts for your first blood test? I'm still learning here after 13 years, but if you've only had a second blood test since a first one, and are at Rai 0, it sounds a bit premature to have you start. Would you mind posting what your numbers were and are now? I understand your anger and fear with all of this happening. It really is like going through the stages of someone's death, and what you're going through is completely normal for where you're at. No matter how long any of us are on this journey, all sorts of fears/anger can emerge. What I discovered when I joined HU is that there are so many people here who were diagnosed much younger than me when I was diagnosed at 56. This is a great place to vent, and I'm sure you will receive the best feedback possible.
Sorry to hear this EastBayDad, Even though I had a 5 year wait, I hoped for a much much longer watch and wait. Like many people have. There was nothing I can do about it. I like you, was very angry. To this day I still feel like that but what I hold on to are these meds that are very effective. How long have you been doubling? Was it one time or more? If you have been doubling more then once I see the need for treatment but if it’s only been once they keep testing you at every appointment to see what happens. Trends are what they look at before they say it’s time for treatment. I just want to let you know that we all know what you’re going through. Starting treatment is not easy but it will make you feel better in the long run. It’s going to be ok. Don’t let this disease ruin you like it did to me 5 years ago. Keep going forward there are many very good treatments that will keep you here for a very long time. Be well.
I went from normal in July, 2022 to 78 in January, 2024 to 148 today. My doctors at UCSF told me I need to start treatment on Monday
Hi East Bay Dad,
I’m so sorry this news has hit you unexpectedly like this because I sensed you were buckling down in readiness for a much longer W&W. I’m surprised your doctors are not allowing for a pattern to emerge despite the lymphocyte doubling in case this is the result of infection. This is an unusually swift move to treatment. Are there other errant levels such as your platelets, haemoglobin etc? Are you experiencing issues with swollen nodes, spleen, excessive fatigue and infections etc? I hadn’t thought there were from your previous posts. This must have thrown you into a complete emotional tailspin!
Psychologically it’s hard to adapt when the rug is suddenly pulled from under your feet. I’d need to be asking what the clinical drivers are that are propelling you towards treatment at this speed. Of course your medical team have the whole picture and I’m sure they have sound reasons for recommending treatment but it would help you to know.
This is tough for your family and I’m sending best wishes but if you do start O&V, don’t fear it. I’m Trisomy 12 too with an unconfirmed IGHV status but I had 7 years before starting treatment. However, my ALC didn’t have the same projectory as yours and your doctors may feel that this is indicative of the need to act now. I was the same age as you at dx.
You are bound to be scared but you honestly don’t need to fear the treatment. Any advice and support you need is readily available here and we wish you all the best.
Newdawn
scryer99• in reply to
Yeah, on those numbers I can see the concern. But if you are at Rai 0 and have no other symptoms emergent, I think I'd want a second opinion before starting treatment. It will probably be within the year anyway, but if your other counts are OK, you are not experiencing excessive spleen or lymph swelling, and you can manage the fatigue, a consult with a CLL specialist is definitely warranted. AussieNeil recalls the board ALC record count (and reminded me of it at about this point) and it's well over 1 million.
That having been said, I was at similar progression and age to you -- 19 months from MBL identification to ALC 300 with low platelets and a lacerated spleen to boot. I got the news about treatment start just after my 56th birthday. 17 months later, treatment is going well and while I need to take some immune system precautions, I feel better. The treatments will very likely get you back to some level of normalcy.
I should note that ALC above 200 in my case led to rapid (months, not days) spleen swelling, which is what got me into the hospital with the lacerated spleen. So your oncologist isn't nuts for recommending treatment start. But it's not like spleen lacerations will happen in a day. You'll see it coming.
The other thing to note: this is your body, and your treatment. Just because your oncologist wants to start Monday doesn't mean you need to consent. And any oncologist worth seeing and trusting will understand the need for a second opinion consultation and will wait for you to have that conversation.
Have faith. You have some control yet.
And I'd recommend not freaking your kids out; you will likely be around for many years yet.
I am so sorry these feelings are right for you to be having. So have them, but before you do anything including telling your son in the mood your in slow down (Please).
Worst case, in reality is you are starting a known successful treatment.
There we all are running across a no man's land of sorts, but that's what the rocks and ditches are for, to hide behind, to lay low at times, to get across.
You have to be strong for your son, kids need to see confidence (no matter what their age) mine's 33 and still struggling with my reality. I'm sorry I dumped mine on him and then, gave him an all's clear before I understood the nuances of this illness.
Find out all the factors your doctor is using to determine this, you're listening in the basis of only one metric stated in your post.
Even if it starts soon, you have to be a partner in your treatment and a positive one.
Stay in touch.
Your numbers are certainly climbing at a clip that triggers treatment. Your not alone in this as it has happened to quite a few members. If your interested in how it has gone for them you can search the database here. It will often answer many questions that come to mind. Or just post whats on your mind. Those with the experience and or knowledge will answer.
Your pretty young so V and O will more than likely be well tolerated and effective. First weeks treatment will terrorize your CLL. Leaving you with a drastic reduction in ALC more than likely.
How are you feeling? Are you without symptoms?
• in reply toPacificview
I have no symptoms. Red blood numbers are good. No lymph nodes. No symptoms. This sure isn’t the disease that many people have called “good cancer.” Having to use my silver bullet (V and O) at age 54 sucks. Everybody told me it would be years before treatment. It was 90 days.
Shepherd777• in reply to
Do you have any drenching night sweats? Newdawn is right, it is unusual to have numbers doubling and no other indications. Many of us here have had some crazy high or low numbers that the next lab report demolished. One lab report is not writing our future in stone.
Generally they will re-order the tests in a month and maybe a few more tests in another couple months to see if this test was a fluke or if a real pattern is developing.
MisfitK• in reply to
It's always the odds. There's no guarantee of a long W&W. Usually, the odds are worse if you're young (and you are) and if your markers are on the worse side (which I see are not great).
But as I tell all newly diagnosed folks, everything is a prediction and not a certainty. Each case is individual, and some do have to treat in the 1st year, while some do not. No one can ever guarantee you one way or the other.
That said, I'm really sorry to hear you're one of the unlucky ones who are starting now. In good news, there are a lot of good treatments now, so hopefully it will go very well and you'll be right back to watch and wait (or at least in a stable remission state) in no time.
kimiD• in reply to
Are you seeing a CLL specialist? I would definitely get a second opinion before rushing to treatment. I was diagnosed at 47 and had 6 years of W&W and am on my second BTK now. Wishing you the best.
I understand how you feel, my first oncologist also out of the blue recommended starting treatment. I decided to get a second opinion with a CLL specialist. He felt we could wait to see if there was a pattern or that this was a temporary dip. I agree with Newdawn that they are a bit hasty to start treatment, especially if you have no B symptoms and hemoglobin, rbc, platelets and neutrophils are adequate. I would strongly suggest a second opinion. In your case I don’t think a short delay to start treatment would make any difference in outcome.
• in reply toAlex830
My doctor is a lymphoma specialist at UCSF. He is a smart dude on CLL. On the current trajectory, my WBC will be 360 by July 4. He wanted me to be hospitalized today. I am going Monday because my kid has a big track meet.
SofiaDeo• in reply to
Wait, why are you being hospitalized? Unless you have large internal nodes, or enlarged spleen, the induction protocol does not require hospitalization. They want you hospitalized for your first obin infusion? That is unusual, do you know why?
Counts under 30 for lymphocytes don't always follow a straight line trajectory. A year ago December, my NGS CLL count was 12? with lymphs under 2. A year later, the NGs CLL count was 6400 with lymph still under 2. The 3 month period after that, my lymphs actually decreased.
There must be something else going on, that you haven't reported. Because "lymphocyte changes" alone should not result in a doc urging you to start immediate treatment. And the iwCLL guidelines are only one set of factors.
"The decision to start treatment of CLL depends on the patient’s symptoms and risk of disease progression [6]. Low-, intermediate-, or high-risk is determined using the widely accepted Rai and Binet clinical-staging systems [12, 13]. Additionally, the CLL international prognostic index (CLL-IPI) combines clinical staging with age, the presence of leukemia cells with TP53 aberrations or unmutated IGHV, and serum β2-microglobulin levels [7]. Treatment is generally indicated in patients with symptomatic or active disease, but not typically among those with no symptoms, as set out in the International Workshop on CLL (iwCLL) guidelines [6]. Prognostic markers are important to consider when deciding how to treat a patient. Less-favorable CLL prognostic markers such as del(17p) or TP53 dysfunction do not lead to long-term remissions with standard chemoimmunotherapy and patients with these disease features are best treated with novel agents [14]."
Are you being seen by a CLL specialist? A blood test on a Thursday and starting treatment on a Monday. That seems incredibly quick. What did the doctor say was the factor (s) driving the need for immediate treatment? Don’t be afraid to ask questions.
Thanks,
Mark
My WBC and lymphs doubled in 90 days. That is reason for treatment.
SofiaDeo• in reply to
What does a bone marrow biospy show? What does an ultrasound or CT of internal organs show? It seems odd to be rushing into treatment if the *only* changes are lymphocytes.
There are doctors including Dr. Furman who recommend treatment before you find yourself in ER like my 50 year old friend who waited until his WBC hit 400,000 and doctors who ignore WBC and lymphocyte count. My doctor is in Furman camp.
onclive.com/view/q-a-early-...
DriedSeaweed• in reply to
Do you have cytopenias? If not don’t feel super rushed. Yeah don’t put it off a year but looking at WBC is just one component. If hemoglobin, ANC, and other counts are normal you are still functioning okay.
Also, have they done a bone marrow biopsy to get a sense of how packed your marrow is?
BMB isn’t necessarily important outside of a trial but it does give you a sense of what is going on. NIH and DFCI have done BMBs to keep close track of the cellularity, cytogenetics, pre MRD testing if you ever want to check in the future, and NGS. I find it is nice to know how packed the marrow is. If the marrow isn’t very packed then white counts can go up for other reasons too. Perhaps catching a bug or just a weird blip.
Also, apologies if I missed it but is the trend based only on two time points? With the benefit of hindsight and watching my counts bounce all over the place for 5 years I would personally wonder if they might be different in a month or three.
I recall my LDH went through the roof once early on and all I could think of was Richters. It returned to normal in future months.
I have no doubt your doctor is great but to be sure for me I saw 3 CLL specialists at 3 institutions before it was settled.
EastBayDad,
I can understand how this recommendation has hit you hard, but I also agree with others suggesting caution, because in the discussion you highlighted from January 2022, these two CLL experts don't yet know what is the right decision when lymphocyte growth takes off. I've highlighted the relevant sections;
From your referenced interview (and good on you for doing your research);
onclive.com/view/q-a-early-...
"Richard R. Furman, MD: It’s interesting. Seven years ago, we had a lot of reasons to kick the can down the road. I had a patient whose platelet counts fell 10,000 per mm3 every year, and I watched them go from 150,000 down to 70,000 per mm3. When they hit 70,000 per mm3, ibrutinib was approved, so I was able to start them on ibrutinib without worrying about exposing them to any chemoimmunotherapy. Now that we have these agents, there’s far less reason to delay.
Someone whose white blood cell count is 200,000 per mm3 is likely going to need treatment because of the magnitude of the white blood cell count and the fact that it got there. Treating them and even knocking them back to 10 years earlier would provide them with significant benefit in terms of the fact that you might be keeping their immune system in healthier shape. You might be preventing some of the loss of the T-cell function and residual B-cell development. It might help them in the long term. We don’t have data supporting that, but these are people who are having disease that’s progressing and there might be long-term benefits that we’ll never be able to prove but are real, and we should definitely take advantage of that.
Nitin Jain, MD: This is a very good point, because with patients who are slowly progressing vs patients who are rapidly doubling, that’s an easier argument to make. Sometimes these are patients who are slowly progressing, maybe going up every year from an ALC [absolute lymphocyte count] of 20,000 or 30,000 cells per mcl to approaching 200,000 cells per mcl. I recently saw a patient where it was a much higher value where she was just being watched. The question becomes, “Should we treat them?” It’s an area of research where we need to figure out if there’s a magic number or if we should immediately treat them now that we have much better drugs. There are ongoing randomized studies with the cooperative groups and elsewhere looking at this particular question of early treatment for high-risk patients for therapy."
The challenge is that specialists can't predict whether your CLL might settle down and the doubling time stop and even reverse. This does happen, per the examples in Extended Data Figure 2. of Growth dynamics in naturally progressing chronic lymphocytic leukaemia
ncbi.nlm.nih.gov/pmc/articl...
Look at the top and next to last rows for examples of patients with similar growth patterns to yours, which subsequently stabilised or even reversed.
While you are seeing a lymphoma specialist, do be aware that it's common for non-CLL specialists to lump all lymphoma patients into the one basket and treat when the WBC/ALC exceeds 100. healthunlocked.com/cllsuppo... The quandary you face is whether treating now might possibly rob you of extra time in watch and wait at the young age of 54, when you feel great. "I am at Rai 0. I feel great." A top CLL specialist in Australia, who trained at MD Anderson, did share a few years back that he would not recommend treatment in your circumstances, if there were no other indicators for starting treatment (large nodes, spleen, cytopenias, serious fatigue, etc.). Perhaps he might be changing his opinion as Dr Furman appears to be doing, but specialists do also need to consider whether you face the risk of your CLL outpacing the development of new treatments. V+O is a very good choice and can likely be repeated, but we are still finding this out.
Have you availed yourself of a free second opinion from a CLL specialist from the CLL Society? cllsociety.wpengine.com/pro...
Neil
ALC/WBC can stabilise and even reverse naturally
Neil,
Here are details. I was diagnosed on February 1. Lymphocytes and WBC were 78. No other symptoms. Rai 1. Today was my 90 day follow-up. My oncologist is a CLL Specialist at UCSF who did his fellowships at Stanford and NIH. My WBC and lymphocytes were 146 today. No other symptoms. My platelets and hemoglobin and all other numbers are good. I feel great. My doctor strongly recommended that I start V & O on Monday.
I am trying to get second opinion tomorrow. Second opinion will need to be from one of the top CLL experts at an academic center. Not confident I will get a second opinion so quickly.
I suspect you'll find it difficult to get a second opinion in the tight time frame, but I'm reassured that you are trying to get one. You haven't shared your prognostic markers, though I see you are Trisomy 12 from an earlier posting. The important missing ones are your CD38 (from your flow cytometry diagnosis test results) your IGHV mutation status and B2M level. (CD38 positive and IGHV unmutated both independently correlate with short watch and wait.) These results are all helpful to include in your bio healthunlocked.com/profile/...
As you can see from the discussion about patients in your circumstances, the medical science is not settled. This very much means that depending on whom you ask, you'll get equally valid different opinions. So it probably comes down to your preference!
Given a possible outcome from the second opinion is deferring starting treatment, why not delay starting treatment until after you have that second opinion? As you'll have read from the referenced post about the 100k 'treatment trigger', there really isn't any urgency to start treatment even with a fairly briskly rising ALC. You aren't putting your health at heightened risk by delaying a few weeks as you would be with falling haemoglobin or platelets.
Neil
• in reply toAussieNeil
I was tested for IGVH today. Results not back. I am CD38-. Sole Trisomy 12. My lymphocytes and WBC have been on a rocket ship after I had a bad case of COVID in August.
By the way, the view from the cancer center at USCF is one of best in world. Golden Gate Bridge, ocean, Golden Gate Park. My home away from home.
avzuclav• in reply to
Did he give you any reasons for why he wanted you hospitalized today? That and the Monday treatment start seem extremely rushed for someone with CLL who feels great.
• in reply toavzuclav
Doubling in 3 months.
avzuclav• in reply to
Yes I’m not disputing an expert’s opinion that treatment should be started. Just the extreme urgency.
How many CBCs have you had since Feb, just today?
iwCLL treatment guidelines for starting treatment due to LDT even mention using more frequent tests to establish the doubling time more accurately:
ashpublications.org/blood/a...
“Progressive lymphocytosis with an increase of ≥50% over a 2-month period, or lymphocyte doubling time (LDT) <6 months. LDT can be obtained by linear regression extrapolation of absolute lymphocyte counts obtained at intervals of 2 weeks over an observation period of 2 to 3 months;”
I always appreciated this ancient Sharman blog post on the topic
cll-nhl.com/2012/12/when-to...
Also it seems odd to treat before the iGVH results. Kinda violates the CLL Society mantra, Test Before Treat.
Schubert1870• in reply to
Hi EastBayDad,
I know you are in great hands at UCSF. Besides, I was born there when we lived a stone's throw away from there. The good ol' days back in the 60s/70s.
SofiaDeo• in reply to
I am confused. You wrote you are stage 0, now you say Stage 1. Your WBC and ALC being identical means you have zero neutrophils? You've had zero neutrophils for months now? What did FISH and flow cytometry say, do you have a severe variant? What's your IGVH status?
Remember you don't have a standard lymphoma, which *would* likely be treated quickly with rising numbers. You have CLL which is a totally different critter. A lymphoma specialist is not necessarily a CLL specialist, and they are treated differently.
My lymphocytes and WBC doubled in 3 months. Current trend indicates I will have 300+ WBC and lymphocytes by July 4. Would you wait to be treated at those numbers?
A 50 year old friend of mine was told by a CLL expert that he needed treatment immediately. He got a second opinion. They said he could wait. One week later, he was admitted to ER with a lymph node in his neck that was choking him. He started V & O that night which saved his life.
Admin Note:
Trouble swallowing can be a problem with swollen neck nodes healthunlocked.com/cllsuppo... but having difficulty breathing is extremely uncommon with CLL, so much so that it was the subject of a case study, which highlighted how uncommon it is: hindawi.com/journals/crionm...
A community search of ~40,000 posts found no previous mention of choking due to swollen nodes.
avzuclav• in reply to
I’m not suggesting to wait until July. I’m confused by the hospitalization recommendation from an expert based on the WBC alone.
SofiaDeo• in reply to
Which is why I am asking if ultrasound/CT of nodes has been done. And you do realize, your friend with CLL such that a node grew so fast in a short period of time in a place that impacted his breathing, was a freak thing.
Our body is complicated and not fully understood. A trend has been predicted from two measurements only. I would push for one more data point in 3 months time. This would confirm the prediction. Or invalidate it.
A CLL specialist from a major academic center is telling me that I need to start treatment Monday or I might die. Many people on HealthUnlocked whose opinions I respect are telling me to ignore his advice and get a second opinion even though I can’t get second opinion for weeks. What to do? 😞
J1015• in reply to
Why is he saying you might die? That’s a huge prediction without a long term trend of lab work to support it. Is there something else going on that he hasn’t shared with you? It’s the sense of urgency that is concerning everyone here.
HopeME• in reply to
Hi East Bay Dad:
You raise a good point. It’s hard to question a doctor about his recommendation and we often don’t have the technical information to do so. However, this is your health so I’d try and get to your doctor today and ask him the below:
“Doctor I realize CLL is complex and I don’t have the technical background to fully understand the disease but my research shows that there are many opinions as to what a patient’s first line treatment should be, when it should begin, etc. Therefore, I’d like to get a second opinion and wait to find out if I’m mutated or unmutated but that will take some time. In your opinion am I putting myself in danger by waiting several weeks to a month before starting treatment?”
If the doctor is unavailable I’d email him through the patient portal or contact his Nurse Practitioner. At a minimum the doctors response will be telling. If he is a good doctor he will say I totally understand your thought process and I am certainly not offended by your question if it were my health I’d be asking the same questions………..
I was a new patient 7 years ago at Mass General Hospital and a 70 year old senior Harvard educated doctor recommenced chemo as my first line treatment. He never checked with a CLL specialist about other options. I’m still amazed that this happened at Mass General.
I have no idea what the circumstances of your situation are but I can tell you hospitals are just like any other business: There are all types of employees: superstars, marginal performers and everything in between. Further, miscalculations/errors happen and there are many differences of opinion.
Good Luck,
Mark
Katie-LMHC-Artist• in reply to
Please listen to the Cll specialist. I am sorry that things are moving so quickly. Fear can often take over our brains. There are plenty of people on this site that probably have similar stories. I was in W&W for 12 years because my CLL was discovered by accident. I was 57 at that time. My treatment started based on my blood work. I was scared. My brain went to worst case scenario. This site has been helpful and has given me the support when I needed it. When my brain gets hijacked I work on bringing myself back to one day or one minute at a time. You have access to a great medical center and doctors. Focus on your family this weekend. We will all send you prayers, well wishes, and the support you need. Take care!🙏
It sounds like he hasn't seen a CLL specialist, so your recommendation to "sit back and enjoy the ride" may not be entirely appropriate.
My recommendation was to listen to his specialist and try and stay in one day at a time. Someone else must have said “sit back and enjoy the ride.” Good to see you care!😊
SofiaDeo• in reply to
What is going on that is causing him to say this? "Lymphocyte doubling time" isn't enough.
I would see if the doctor can do a followup call or give a copy of the progress note to you. Sometimes in these visits we are overwhelmed and it is difficult to absorb every detail. Maybe there is more going on that he wrote in his notes. Other results that are also pushing the decision.
What is unusual is that it seems like decisions are being made faster than usual. If you had Richters there would still be a lag time waiting for biopsy, etc. More than a weekend. Usually, treatments that need to start urgently are more of the acute leukemias where you might not leave the building.
If you do start treatment it is really no big deal. If there are problems they are trained and can handle it. Bring a tablet and a book. It is frankly very boring doing infusions. If you can shed the anxiety napping is best.
Maybe I’m weird but I like getting the bone marrow biopsies every so often so I know what is going on in there. I’d even offer up a lymph node since I am more SLL but I don’t think they want it at this point.
I’ve gone through periods where I checked my labs once or twice a week because of neutropenia issues prior to treatment. Maybe you could ask for standing outpatient lab orders to check in the coming weeks.
If you asked for a BMB and to postpone a week or two I would be surprised if the doc has a problem. If he says something else is wrong besides just the ALC and he doesn’t advise waiting then you could roll with it.
I agree 100% with getting the detailed visit notes via the patient portal. The doctors rationale for hospitalization and immediate treatment would likely be there. (Thanks to the new'ish 21st Century Cures Act that requires providers to do this.)
Hi, if it's of any comfort, I was diagnosed at stage 4, 3 years ago, do no watch and wait. I went straight to O+I and was in uMDR in 243 days. I am on twice daily Acalabeutinib and monthly bloods are stable. I retired at diagnosis to be a full time dad, I have just turned 60 and living a full and normal life with by now 6 and 4yr old. I plan to be at my youngest graduation in circa 2044. The drugs are great and a Positive mental attitude is key. Take care keep safe.
why are you starting treatment. Doubling is not really a trigger, there is normally symptoms or other factors. Infections, spleen size, weight loss. Have you had a second opinion? If you are in the U.K. it’s easy to get a private consultation from a specialist.
MovingForward4423 your statement "Doubling is not really a trigger" is technically incorrect. per the 2018 iwCLL treatment guidelines:
"Active disease should be clearly documented to initiate therapy. At least 1 of the following criteria should be met.
...
4. Progressive lymphocytosis with an increase of ≥50% over a 2-month period, or lymphocyte doubling time (LDT) <6 months. LDT can be obtained by linear regression extrapolation of absolute lymphocyte counts obtained at intervals of 2 weeks over an observation period of 2 to 3 months; patients with initial blood lymphocyte counts <30 × 109/L may require a longer observation period to determine the LDT. Factors contributing to lymphocytosis other than CLL (eg, infections, steroid administration) should be excluded."
ashpublications.org/blood/a...
As you said that’s just one trigger. Mine was doubling but I spent a good years and half on W&W until B symptoms. As I said, 2nd opinion is an option.
Further tests results returned and my red blood cell numbers have dropped too. I will be starting treatment Monday. 😢
Phil4-13• in reply to
EastBayDad, YOU'VE GOT THIS! You are in good health and in good medical hands. Each of us are different in this "very sneaky" blood cancer. So much is learned about it and the treatments everyday. If I was you, I would definitely WRITE down every concern expressed here about starting treatment now and DON'T let your doctor "blow off" answering them to until he answers them to YOUR SATISFACTION. When that "talk" session is over, you can feel confident and relieved with you giving the "green light" to start treatment now or delay it (yellow light). I'm glad you posted about this. I learned much and will have some questions for my doctor. I'm 75, dx when 70(56,000) 13q14del unmutated IGHV, 94% of cells negative TP53, in W&W, and now WBC at 160,000 and platelets and RBC dropping. I feel great and my doctor moved my checkups from every 6 months to 3 months. 🙂 Sandra
HopeME• in reply to
Ok. That is important and certainly could be the trigger we all are missing. I’ve had that happen and it’s certainly best to avoid blood transfusions. Good Luck,
Mark
Sushibruno• in reply to
This doesn’t mean it’s the end! It’s the beginning of getting your health under control and moving on with your life. You will come out winning.
SofiaDeo• in reply to
I once had a doc call me at 7am on a Friday and tell me to get to the hospital, I needed treatment immediately, I had 60% blast cells on my CBC. I insisted on repeat bloodwork, and I didn't have blast cells, it was some oddball "stopped a BTK drug and got weird cells" thing.
Unless your platelets or RBC's or neutrophils have you in the danger zone, or there's some other tests like an insanely high LDH, Beta2 microglobulin, etc.there should be time for a second opinion. Please ask *why* you *must* be started immediately. Because from what you are saying here, the urgency doesn't make sense, there is something missing.
ncbi.nlm.nih.gov/pmc/articl...
"The decision to start treatment of CLL depends on the patient’s symptoms and risk of disease progression [6]. Low-, intermediate-, or high-risk is determined using the widely accepted Rai and Binet clinical-staging systems [12, 13]. Additionally, the CLL international prognostic index (CLL-IPI) combines clinical staging with age, the presence of leukemia cells with TP53 aberrations or unmutated IGHV, and serum β2-microglobulin levels [7]. Treatment is generally indicated in patients with symptomatic or active disease, but not typically among those with no symptoms, as set out in the International Workshop on CLL (iwCLL) guidelines [6]. Prognostic markers are important to consider when deciding how to treat a patient. Less-favorable CLL prognostic markers such as del(17p) or TP53 dysfunction do not lead to long-term remissions with standard chemoimmunotherapy and patients with these disease features are best treated with novel agents [14]."
thinking of you x
my long retired friend a haematologist once said to me ‘if you are going to get leukaemia CLL is the best one to get’ Current treatments and more to come will keep you alive for many many years. Good luck
I really feel for you. I empathize with your anger regarding having CLL, and now a decision on limited time to boot!
My CLL specialist, Dr Nicole Lamanna at Columbia Presbyterian, does phone consults. She seems to be of the “wait longer to treat” camp. Just putting it out there if you want to try for another opinion.
You are not alone -
NW
You mean your ALC was over 30 and it doubled in 3 months?
Good luck with your treatment! I think quite a lot of us have felt so cheated by the drs in the system who said to us “that you will probably never need treatment, a third of people don’t” (when i already had very poor quality of life). Before Covid, there were a group of drs who wanted to change the name of CLL in watch and wait to something other than cancer, as if there was no risk or illness.
All of that meant I really resented the team who was first treating me. They had missed that my spleen was huge all along. Their knowledge about the treatment I needed wasn’t very good, so I got a second opinion . It was another world at the specialist cancer hospital. I finished treatment with V&O about 6 months ago. Apart from a bit of a reaction at the beginning of treatment because it worked so fast, it was all ok, and I made some very good friends. I now have remission!
I think everyone on here is just a little bit cautious about the speed of your treatment, once decided. We all watch out for each other and share our knowledge, so you know we’ve all got your back! 👍 I had to have a scan to assess the size of my lymph nodes prior to treatment, as they tend to put you into categories of high risk, low risk of toxic lysis syndrome (how quickly a large amount of cells break down) when you start V&O. It determines what premeds they give you, and the dose of obinutuzumab, and the monitoring. Maybe they are already decided they will treat you as high risk of TLS, like me. They are experts, and TLS is something they watch you like a hawk for and treat instantly so you never need to get frightened about it, but it’s important.
Maybe ask them what category you are in and how they’ve assessed it x
It’s a wonderful treatment and I think that’s where we are “a good cancer” . The treatments that have been developed in last few years are so good, and there’s more coming. It’s such a horrid shock when they say you need treatment so fast, but you will meet the most caring staff and they will look after you.
Big hug! 🤗 and good luck!
Hi, sorry to read your post. For me 'watch and wait" has been approximately 12 months and my WBC count has gone from 35 to 155 in that time. I feel ok but frequently very tired and lethargic. I've just had my third MRI , about 8 blood tests in and waiting results to start my treatment plan.
I think with all these things it's very much based on the individual and "one size" just doesn't fit all.
As has been said before ...the knowledge on this forum is amazing.....vent .....get it off your chest , ask ....research and learn. One thing I've taken from this process is that you are always learning. Good luck 👍🏻
Hello, EastBayDad,
Is it possible that your increasing lymphocyte count is making the doctor worried about TLS once you start taking Venetoclax? I don't know if on a V+O combo whether Obin is given first to reduce the lymphocytes in your system and then V a bit later.
But even so, when I was on a six-month clinical trial for Obin in 2015 it rapidly cleared my blood but didn't have much effect on my lymph nodes or bone marrow.
Others more knowledgeable than me will know the answer to this question. But I share your pain about being led to believe you'd have a long watch and wait. I only got a year after diagnosis and was pretty annoyed since I had been told I wouldn't need to be treated for several years.
The numbers aren't high enough for TLS to be a large concern, unless there are massive internal nodes. Please remember TLS takes *time* to develop; it's *not addressing any electrolyte or organ changes* that is the problem, and allows a TLS to take hold.
Been there and I know exactly how you feel. It's really annoying to be told you are good for 5 or so years to be in treatment right away, which in my case was 6.5 months at 47 (I'm 55 now). And my son was 16 at the time so that was a *fun* conversation. I know you are out of time, and what do I know, but I thought a BTKi like acalabrutinib would be the first treatment (though mine was O+V+I via a trial in 2016 because I am 17p deleted and have other negative markers on top of that). It took awhile for me to get an appt and get my FISH test back. Do you know what your markers are? I know it will be hard to get a second opinion, but given my bad experience with my local hematologist, I would try. And don't rule out last minute travel to see a specialist if that is a financial possibility. I'm in Philly and go to Cincinnati. Hope this helps. Hang in there. You'll be ok and back to yourself in a few months, I promise.
EastBayDad,
I know that I am singing to the choir, however if I perceive your circumstance accurately, you are under the care of highly competent specialists. In addition, your specialists have specific information available to them for evaluating and recommending this action. Try to focus on learning the added information and how to apply it toward the desired outcome as an informed self advocate.
It is understandable to be pissed and frightened. These emotions are primarily fueled by the influence of what is unknown. Gather all the incomplete data and combine it with what you know and having carefully considered all that the doctors suggest. Think about what your long and short term treatment goals are, consider the response offerings in this post. Then ask questions about the treatment (s) that are relevant to your concerns.
Be encouraged, that probability is on your side in that the novel agents and specialized doctors of today have a very high success rate.
I love to skydive, and although it is almost certainly fatal if the chute does not open, rarely does that happen.
Look forward to hearing from you when the smoke clears. Nothing like a dry grass fire in 70 mph wind
Hoping all the best and a soft landing,
JM
NewdawnAdministrator
Hi EastBayDad,
I hope by now you’ve managed to resolve what’s going to happen. In truth I always feel quite uneasy when the membership advice contravenes what your specialist is advising because whilst we have wide collective experience and access to formal guidelines, your doctors have your full clinical picture and are the experts in this field. The conversation needs to be had with them for your own sake but in the final analysis, the advice given on this site is never intended to replace the medical advice individuals are given. Second opinions are invaluable but you seem to have a very skilled team already and trust them. If it was my medical team I’d be less confident!
Of course you feel robbed at being propelled immediately into treatment but there’s no fairness or certainty with CLL. Anger is pointless but we’ve all felt it at some point and if you’ve heard that CLL is ‘the good cancer’, then you can guarantee I wasn’t amongst the collective saying this. It’s better than some fast acting, aggressive cancers but little ‘good’ about it.
Time to focus on what needs to be done. In truth it’s hard to see that any risk to you is imminent. I’ve not heard of any evidence of you having lymphadenopathy or plummeting levels like the friend you mention. I’ve had a large node obstructing my trachea area and still wasn’t rushed into treatment.
Sending best wishes for whatever needs to happen next to secure your health and your future.
Newdawn
Keep talking with your CLL doc(s) about your concerns. Changes in preliminary assessments are common because one point in time is not very predictive. Diagnosed in 2008, I had a brief response to Fluadabine/Cytoxan/Retuximab and was fortunate to make it on to the first phase II trial of PCI 32765, later to be known as ibrutinib. I'm still on a BTK inhibitor - acalabrutinib, now at year 13 and going strong. You will adjust to treatment and the voluminous information available from your care team, your reading, and the shared experience here on HU. I used to treat CLL and all we had were toxic agents like fludarabine, cytoxan and others non-targeted drugs for those who required treatment. The landscape has changed profoundly in the last decade and as shocking as a new diagnosis and need for treatment may be, odds are you will be around with good quality of life to see even more effective treatments because of ongoing clinical trials and basic research by NIH, Academia, Pharma, the Leukemia and Lymphoma Society (LLS) and a multitude of European Centers. It may seem bad now but your outlook on and appreciation of life will deepen. It takes some time, but you have it.
EBD - Read your post n all your replies plus the awesome replies from so many wise ones in this forum (…. is this a great place or what?… to ask questions and/or vent rightfully so?). You were slammed in a tough corner with news that as you stated made you both mad n scared at the same time … and rightfully so! Who the heck wants to hear the words “you might die” wo treatment? That’s a wake up call nobody ever wants to hear.
I’d be scared as heck to hear that and yes bring on the save your life treatment! Mad 😡 well yeah your 54 were told W&W could be a long journey and who wouldn’t look forward to a long journey treatment free “feeling fine” etc etc … where the biggest concern of the day is knowing where and what time your son’s big track meet is? Yeah family life and events are a BIG deal and when you might be denied that via a doc’s alarming “you might die” words I get the being mad 😡 part!
Sudden unfortunate medical issues can (and do) rock our lives. Boy … been there CLL dx right at start of retirement n heard those words “you got cancer” … whaaaat?!! Scared n mad 😡 yeah… figured I’m gonna die n stolen golden years with wife, travel to far away lands or just enjoy peace at a lake with family n speaking of family spending time with n with the grands too … hey maybe I can coach them in sports like I did my sons n on n on. But sudden “bad” news throws one. Then learned from CLL doc n this forum that CLL is treatable n beatable not necessarily a death sentence. And as prior repliers noted it’s a unique cancer to us all no one case is like another. No guarantee on W&W length and so on.
You got dealt a sudden set of cards you were not planning on. Your added replies reasonings validate your expert doc’s recommendations to get treatment now. Forum’s replies were great advice etc but with more of the picture of your situation most of us are probably understanding better your expert doc’s suggested actions.
Good for you to have such an expert already in the fold to trust.
I’m sorry for the news you’ve been dumped with. It’s a hard pill to swallow but in time and once you are treated n doing well you’ll be glad you did what the doctor recommended. You can look forward to your kid’s track meets and so much more.
I can really relate to your situation as for me just went thru sudden needed tests on my heart and 4 main arteries. Would I die? Will I need open heart surgery etc etc. What the heck … scared n mad 😡.
On top of that and the kicker of em all wife sudden news just after my CLL dx … Stage 4 mTNBC .. a cancer that’s not beatable ….horrible Shiiiiiiiit it is …. n scared/mad BIGTIME. Talk about bad cards dealt!!? That topped my CLL and heart issues by a mile cus those issues are generally treatable n beatable.
But the medical science is getting better by the day and who knows back to your case what new treatments they’ll have in 5 or 10 years or so? Might just find a “cure” for your CLL. The “AI guy” put to work it just might happen.
so
Long text but do want to note EBD look ahead to good things that might be coming your way in terms of treating n beating your CLL. N if so you’ll have plenty of years to enjoy your kids n your kids kids etc etc. Good luck on your treatment may you come thru it with flying colors EBD. Can’t wait for a great news post from you!
If you are anemic with low red count then that sucks. Hopefully it will recover quickly once they clear out the CLL.
I think what makes it stressful is your recent diagnosis. I did a few rounds of rituximab a few months after diagnosis at 31 for a cytopenia and found the whole thing to be a fascinating spectacle. Stressed out of course. But I think I was relieved to start treatment with the big guns at 37 last year. I know treatment will come again on the horizon and hopefully it will be just as boring as last time. The whole watch and wait can get really annoying.
You will get over much of the anxiety as more time passes. Of course it will not completely go away always wondering about mortality but you get busy with life.
Hopefully 6 months from now you will feel less anxious, more relaxed and bored during doctor visits knowing the CLL is under control.
I'm sorry you are having to start treatment right away. I would feel scared and angry, too. I was just talking with a friend (who is battling another type of cancer) who wisely said that we often try hard to see the positive or get into gratitude thinking right away (i.e., at least I'm lucky that ...). I think many CLL'ers are even more prone to that thinking, given the chronic nature of the disease. This kind of thinking can be helpful at times, but sometimes we don't give enough space and voice to the part of us that just feels plainly unlucky, pissed, robbed, etc. That voice of "WTF" and "why did this happen to me!?!" I don't think we can live in the angry state forever, but, it's not an insignificant player in our lives. It will come and go.
It sounds like you are doing everything right in terms of self-advocacy in this process and have a great medical team. Glad to hear you get views of the Golden Gate bridge. Wishing you the best with your treatment.
Good morning
I feel your pain and it’s not easy to be going through all of this. It can be like a roller coaster of emotions.
Just because your ALC doubled in three months doesn’t mean you have to start treatment.
I’m a physician that have studied the topic of CLL a lot, and I’ve been through treatment both in 2018 and at present.
My lymphocyte count doubled in two weeks, or in one month, or in six months, and then would go back down and it is followed his pattern for over 14 years.
Both times I started treatment. My total lymphocyte count was 225,000
The indications for treatment are as follows
Hemoglobin less than 10 or 11
platelets persistently below 100,000
enlarged painful spleen
very large, painful lymph nodes
Persistent night sweats or fevers without explanation for more than two weeks
Unexplained weight loss of about 10% of your body weight
Extreme fatigue unexplained by other causes
Typically, the decision to treat is not made on a single blood test as your lymphocytes are extremely volatile. They can drastically go up after a vaccination or a minor cold or infection or any number of random reasons.
In 2020 my ALC tripled in one month then doubled again in two weeks and again in just one week and then tapered off. I did not end up needing treatment forAnother three years.
Unless you meet all of those criteria listed above, I would definitely seek a second opinion
Good luck and God bless
Ski pro
skipro I agree with you 100% on not using a single blood test to treat. However it is clear from the iwCLL treatment guidelines that LDT (lymphocyte double time) IS a reason to start treatment as noted earlier in this thread. healthunlocked.com/cllsuppo...
Technically there are seven criteria for starting treatment. In general I agree with you and you make excellent points.
(edited) The link to my earlier post doesn't work but search "LDT" in this thread and you'll see it.
(edited) Also they state this in the guidelines, seems a bit contradictory 🤷 "Also, patients with CLL may present with a markedly elevated leukocyte count; however, leukostasis rarely occurs in patients with CLL. Therefore, the absolute lymphocyte count should not be used as the sole indicator for treatment."
I see your kid has a big track meet this weekend and I'm assuming the season isn't quite over?
I'd ask the doc if it would be possible to postpone treatment and get weekly/bi-wekly blood checks instead until the season is over (mid-to-late May, right?).
While you are definitely in the Goldilocks zone, you might have a few weeks to play with, and might handle it better if you got to see all the track meets and then plunged in.
PS - My doc and I have already talked about my trips this summer (May - I'm good for that one and August), and why I want to make my early August one (it's my husband's bucket list travel event and our 25th), so if treatment can wait at least til late August if I need it at my June appointment, that would be ideal...he seems receptive as long as June isn't TOO bad, and I stay on top of being honest with symptoms...
So sorry for your development--and understandable shock. I'm assuming you have some negative markers? Are you unmutated? Curious whether your hemotologist/oncologist gave you any heads up regarding your situation. I mean, going from normal to 70K in 3 months sounds alarming in itself. I assume they've checked you out for any weird, virulent infection. Fortunately, and as others have mentioned, there are now so many good sounding treatment. Good luck and pls keep us posted.
East Bay, we all are going to support you no matter which way things go. We just cared because the hurry up was out of character for most that are tied to experts. So, we became habituated to urging caution.
Some of us came to this board thinking some pretty dark thoughts and found this site in time to be a life saver over some irreversible choices. So please don't stay angry with the community, tell us of your treatment journey check in, let us know about the good stuff - a track meet winner, a family trip, whatever you celebrate with as you and your doctors tamp this fire down.
Long may you run.✌️
I just started taking the drugs to get ready for Monday. Maybe I am starting a few months early. However, I will be fine with my hospitalization before summer rolls around. I will report back in a week.
Sushibruno• in reply to
👍👍
Salad55• in reply to
It is a good thing you are being hospitalized to start treatment. I was as well. I faint easily. When I was given O for the first time, I fainted, lying down and with about 5-6 doctors, residents, and nurses in the room. Then, later I started V. I was on V for 1 year. I have been in remission for 20 months. My WBC is still normal. I was UMRD for a year and now it is almost negligible, so the doctor is not worrying about it. Good luck! I hope your treatments go well!
Best to you and your family EastBayDad.
I was diagnosed at 53 (youngish) and had 22 months (shortish) before treatment but I dove right in and educated myself on treatments and the best CLL specialists so I used that "brief" time well.
You didn't have that opportunity, so of course this is more frightening for you and your family. V&O is a good treatment and was not yet available when I needed treatment - so many advances in the last decade.
We Young 'Uns (at diagnosis) will have more treatments in the pipeline there for us when needed down the road. UCSF is a good treatment center - even if your doc is not CLL/SLL concentrated in his practice - you are not being treated at a community hospital.
Your team must have a reason for the sense of urgency and hospitalization, and you have made your decision.
Such a good perspective that if you were to delay treatment - you are only talking about a matter of months versus years. So best to follow the specialists advice who has your medical history and test results in his hands.
You got this EastBayDad. We are rooting for you to have an easy go of it. Onward!
I’m 58. Diagnosed at 42, so 16 years from now you’ll be 70. Lots of new drugs breaking thru. Speak to a counsellor and enjoy life. Best wishes
Thanks for the good wishes everybody!!
Pacificview• in reply to
Sounds to me like you are getting great care. All the best to you with your treatment course. May it go smoothly with no noticeable side effects, as many here have enjoyed.
• in reply toPacificview
Thank you!! Optimistically terrified.
Hi East Bay Dad. Thank you for sharing. Sending good thoughts your way. I know you are in good hands at UCSF. Did you have genetic testing done (FISH, IGHV status etc.?).
Trisomy 12. Seems to grow quick.
Doctors at UCSF, Dana Farber, and Stanford reviewed my data in the past 24 hours. All of them agree that treatment is necessary on Monday. All of the people who told me to question the advice of one of the top lymphoma doctors in the US created unnecessary anxiety for me today. If you want to give medical advice on CLL, take your MCAT, apply to medical school, go to medical school, do a fellowship, give advice. If you haven’t done that, don’t give medical advice. People might listen to you and die.
EastBayDad, That's excellent that you now have thorough confirmation that you need treatment from checking with those doctors. It is very important to have that certainty. I and many other supportive members totally get what you have been through, but please appreciate that our concerns that you consider seeking a second opinion were well placed, given how all this transpired. As you acknowledged in your post, you were expecting a much longer time before needing treatment and all that you shared other than your recently developed lymphocyte doubling time, supported that that initial expectation was realistic,
This from the USA's highly regarded CLL Society is why our members were encouraging you to seek a second opinion;
Test Before Treat is one of the most important things you can do for your CLL / SLL!
Predictive and prognostic testing are critical before choosing any therapy for your CLL. Your life may depend on getting the appropriate testing before treatment, as these tests will determine which therapies will work and which will not. Incorrect treatment can be tragic.
cllsociety.org/newly-diagno...
Being recommended the wrong treatment or treatment too early is sadly not an uncommon occurrence - hence this CLL Society's Test Before Treat program, which importantly includes educational material for US doctors. Of note, two of our US volunteers were initially given the wrong treatment for their CLL.
Just 21 hours ago, you said "A CLL specialist from a major academic center is telling me that I need to start treatment Monday or I might die." It is extremely unusual to be rushed into treatment for CLL for what you reported. Further, while you'd been recommended a good treatment choice and were already starting pre-treatment meds, you hadn't yet had prognostic testing completed! Urgency is important if you have Richter's Transformation and perhaps an auto-immune condition, but a day ago you said "I have no symptoms. Red blood numbers are good. No lymph nodes. No symptoms." Also "My WBC and lymphocytes were 146 today. No other symptoms. My platelets and hemoglobin and all other numbers are good. I feel great. My doctor strongly recommended that I start V & O on Monday." You also said that you were in stage 0 or stage 1. The only concern you mentioned was your fast doubling lymphocyte count - apparently based on just a couple of reported measurements and "Current trend indicates I will have 300+ WBC and lymphocytes by July 4." You still haven't shared why the doctors you've consulted consider that you need treatment so urgently and we have members who have had lymphocyte counts of up to 800 after starting treatment and members in watch and wait with counts several times yours.
We don't know who your specialist who initially recommended treatment is and it was initially uncertain if they were a lymphoma specialist or a CLL specialist. As members have pointed out, there are specific guidelines for starting CLL treatment, to which you were referred and which are different from that used for lymphoma treatment, including an allowance for a much higher lymphocyte count with CLL than is used for other lymphomas.
HealthUnlocked notes in the Terms of Use for this platform; support.healthunlocked.com/...
3. Medical advice
Our Site’s Content as well as any content on other sites linked to from Our Site, including in any community is not to be construed as medical advice or professional medical opinion and is never a substitute for professional medical advice. Even if another user appears to be a medical professional they are not in a position to undertake a physical examination or understand your full medical history. Therefore, you should always speak to a doctor or other health professional about your condition and/or treatment or changes to your condition and/or treatment. In an emergency always dial your local or national emergency telephone number (see a list here) or direct yourself to your nearest emergency department. Never delay seeking medical advice or treatment or dialling emergency services because of something that you have read on Our Site.
I'm sure everyone following your harrowing experience would appreciate knowing why the three doctors you consulted - "All of them agree that treatment is necessary on Monday", because it is through sharing our experiences that we all learn to live long and well with CLL.
We all want you to do well with your treatment, will be following your experience with interest and will continue to provide you with support.
Neil
Neil answered it best. The long and short is, you brought your anxiety to us, we told you to get all the facts.
Personally, I'm chalking it up to just a very upsetting day. No harm no foul to me.
🤝🙂
The "wrong" treatment is primarily FCR/BR when the patient has TP53 mutated or 17p deleted and more recently IgHV unmutated.
Neil, you are such a gem. We are lucky to have your knowledge and sage feedback.
DriedSeaweed• in reply to
Everyone here cares so that is why you got a lot of responses. The first post implied a decision was being made based on one thing by one person so it perked everyones sensors and raised a red flag. As it should. No one knew you got consults from three institutions. There was incomplete information and many of us are used to having much more than one piece of the puzzle.
You clearly got your ducks in a row better than all of us that you managed to get two extra opinions within the span of 24-48 hours! Most of us take weeks or months to get that far.
By questioning one doc and getting two more docs to review your whole chart is impressive and I think it is worth the anxiety so now you can be 100% sure.
Also, it can be helpful if you name drop so people in your position in the future can potentially seek three opinions within a couple of days!
MisfitK• in reply to
Breathe.
Remember, this is a message board. No medical (or even life) advice should be taken as gospel here.
I think most posters just wanted you to "trust but verify" before treatment. When you're in a whirlwind timeframe like you are (but one even your docs let slip a few days, so time isn't an absolute emergency), you still can take the time to make sure everyone has their ducks in a row and has an absolute lock on what you need and why. Thanks to posters' encouragement, you got to do that. And good docs never mind you doing it - they went the confirm sometimes as much as you do.
And that confirm info might be really crucial for you as you go through treatment now, b/c since you are going in feeling so good with so few side effects, you might get hit a little hard and wonder "Why'd I have to start now and feel this bad? Why couldn't I have waited til I felt bad, so I'd at least feel better getting treated?" And now you know 100% why. That info will be priceless to you mentally.
Hi.
Allow yourself time to have those feelings, then use it to face what will happen.
All our stories are different and never what we want. I went from diagnosis in Dec 2019 to next stage in 3 months and have struggled with side effects ever since, especially severe fatigue. Then March this year had a lymphoma diagnosis so under going through treatment. It was a shock to have 2nd cancer and I had to adjust to it.
Re, going straight into treatment, I find it odd too, as I have had multiple conversations with my Hematologist about getting treatment eventhough my bloods were below what would normally be considered to start treatment. Eventhough, I was expecting like effecting fatigue plus multiple infections.
They kept say its too soon, I am young @ 56 (my favourite Dr 😍) as they prefer to do treatment as late as possible.
Others have suggested getting more test results, to see what's going on. Yes doubling is an indicator I was told, but so was red blood count, hemoglobin etc. So a lot of my spikes were to multiple pneumonia's and other infections a d slowly came down but always remained elevated.
Stay strong, keep adding info and keep asking questions
Hi East Bay Dad (I haven't caught up on the thread so not sure where you are at with treatment etc. today). I see Dr. Fahkri at Stanford (they hired her from UCSF after Dr. Coutre's passing). She is the CLL specialist there and it might be worth reaching out to her to see if you could have a video consult? She knows all of the folks at UCSF. From reading about the programs there I would trust those specialists and they are working with the latest protocols.
Anyhow, you have not had a lot of time to digest this entire diagnosis and all of the information that goes along with it. It has taken years for me to have context, understanding and perspective. I can imagine this is all extremely traumatic.
You have a great group to support you here. I can't wait to hear about the V+O treatment and how you do as well. (if you feel like sharing).
I am optimistic for you and so happy you have some of the best care in the country. Sending hugs from our rare club.
A
• in reply toAshkm
Thank you for your very positive response. I am being hospitalized and starting treatment Monday morning. I trust my doctors at UCSF and am 100% confident that I am making the right decision. Waiting a few weeks or months could put my life at risk.
As I said in a previous post, a friend of mine was told to start treatment immediately at Sloan Kettering. Mayo told him he could wait a few weeks. He waited. A few days later, he was admitted to ER because enlarged nodes were choking him. He started V+O that day. I want to start while I feel great. By the way, view from UCSF hematology is one of most beautiful in the world.
Admin Note:
Trouble swallowing can be a problem with swollen neck nodes healthunlocked.com/cllsuppo... but having difficulty breathing is extremely uncommon with CLL, so much so that it was the subject of a case study, which highlighted how uncommon it is: hindawi.com/journals/crionm...
A community search of ~40,000 posts found no previous mention of choking due to swollen nodes.
Pacificview• in reply to
I think your Docs are being very attentive and thorough, which is a great comfort. Many times Docs can be dismissive, which your friend experienced.
Hi mine also went from 69 to 170 in 3 months I’ve finished treatment and now in remission I finished the Ventoclax in Dec23 I’m back to work and still feel really tired had a constant follow up last week and he’s said I’ve done really well on 6 monthly IV and 12 months of Ventoclax hope this helps
• in reply toJcook113
Thank you for supportive comments. Are you Trisomy 12 too? My numbers have climbed relentlessly since I had a bad case of COVID in August. My doctor was stunned that I was Rai 0 and my numbers doubled in 90 days.
I am Northbay, 49 and started treatment 3 weeks after diagnosis. Hope your first infusion went well. Do you mind sharing who you see at UCSF? Thanks and hope you’re feeling ok. Was a hard first week for me dropping all the WBC (I was 350k) but it gets better!
• in reply toMcc28
Hi. I see Dr. Spinner. I like him a lot. Great guy. Message me with your direct email and I can answer any questions you have. I met a great guy from Berkeley last week. We are going to start a CLL hiking support group soon. Let me know if you want to join.
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