New guy here, just want to share my story. - CLL Support

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New guy here, just want to share my story.

CallmeT profile image
38 Replies

I have been watching and reading posts in this group for a little while but now I figure it's time I introduce myself and tell my story. I am a 52yr old male living in Hamilton, Ontario. I am very physically active and consider myself to be in pretty good shape. I have a great outlook on life and am generally very happy but you can imagine that after hearing a CLL diagnosis, it took everything I had mentally to get through the first few weeks.

Now in hindsight, I can think back a year or so and recall incidents where I just didn't have the energy that I thought I should, but at the time I just chalked it up to being a little out of shape from all the COVID laziness. In the fall I decided to kick it up a notch to get myself out of this funk and started hiking up to 30km a day, typically one or two days a week (the plan is to hike the entire Bruce Trail). This initially felt amazing but come mid January I was starting to wonder why each day was actually getting more difficult. With some prodding from my wife, I eventually called my GP and went for bloodwork. I received a call early the next day informing me that I was anemic and he mentioned Leukemia which immediately sent shockwaves through my mind. My instructions were to go immediately to the ER, specifically Juravinski, the local Cancer hospital. My GP's diagnosis of Leukemia was soon refined to CLL and the next thing I remember is receiving my first transfusion.

Just for a baseline, my initial blood counts were; Erythrocytes - 3.1, Hemo - 67, Platelets - 38, Leukocytes - 173, Lymphocytes - 140, Neutrophils - 1.7. If you're in the US reading this then some of those numbers may not make sense as I gather we measure things differently up north. Basically Reds are in the basement and white are ski high.

I was diagnosed as stage 3 which basically means no W&W, I needed immediate treatment. The next day I had the first of many appointments with my specialist. A barrage of blood tests were ordered and to summarize the results, I had everything one could want and nothing you wouldn't want, so I was the perfect candidate for FCR with great chance for a long remission. The idea of taking drugs for the rest of my life weighed heavily on me so this was definitely a preferred treatment, although I know in the back of my mind that there will be a time when I don't get so lucky. I had the option of taking the Fludarabine and Cyclophosphamide orally at home so I took this rather than having to do daily trips to the hospital.

On the morning of my Rituximab IV I felt great, like really great, and it seemed unreal that I was about to undergo a serious poisoning of the body. Physically this disease has had very little effect on me but like most people, the mental aspect is hard to deal with now and then. The Ritux started fine but about 3 hours in the fever started. A little Tylenol knocked it back down, they slowed the Ritux, and eventually I finished the bag. They did bloodwork again and my counts were not good so I received another transfusion of whole blood as well as platelets. They also took blood for cultures which they need to take from both arms, more poking. Everything eventually settled and I was sent home with more antibiotics.

I woke the next morning with a bit of a fever again but it settled just in time to start my first round of chemo drugs. The day was fine, even got out for a walk for a few hours (with an afternoon nap of course), and ate well. That evening the fever started to come back and after a couple calls with the on call specialist, it was back to the hospital with me. This meant another COVID test, more blood cultures, and more transfusions - platelets and whole blood. By mid day the next day I felt good again but spent the rest of that week in the hospital undergoing daily bloodwork and observation. The effect of FCR was very evident, my lowest numbers were Erythrocytes - 3.0, Hemo - 74, Platelets - 7 (yes, dangerously low), Leukocytes - 0.6, Lymphocytes - 0.2, Neutrophils - 0.2 (also dangerously low).

After a rough start, the rest of my story brings great optimism. I did hit a low point about a week after my initial treatment where I was pretty tired but at no point did I experience nausea or any more fever, I was finally on the recovery track. Just before I started my second treatment my numbers had bounced back to near normal levels and I had more energy than I had felt in a year. 27 days after start of first treatment; Erythrocytes - 3.7, Hemo - , 105, Platelets - 212, Leukocytes - 2.4, Lymphocytes - 0.5, Neutrophils - 1.5.

As I write this it is 4 days after finishing my second treatment and I feel great! I did have a couple of lazy days near the end of treatment but overall didn't really miss a beat, very different from my first treatment. For the first time since diagnosis I have a strong feeling that everything is going to be just fine. Yes, in the back of my mind I know that I will have to go through this all again sometime in my life, but hopefully that's a long time from now.

What's on my mind now is MRD. In Canada they don't test for it, they just run the full 6 rounds of chemo and I have heard arguments for both sides of this. Given how I feel now and how my numbers have bounced back after one treatment, do I really need all 6 treatments? What have others done? How did they test for MRD? I trust my doctor and the Hematology team but I have to wonder if subjecting my body to possibly unnecessary chemotherapy may be more harmful in the long run over stopping the treatment early.

I wish everyone here success in their treatments and many years between them. There is a huge mental aspect to CLL so try to keep smiling and enjoy living life to the fullest :)

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CallmeT
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38 Replies
Pacificview profile image
Pacificview

Hello, just wanted to say welcome. You didnt exactly get to wade into the pool....:)There will be many here who will be able to answer those questions you ask. Its above my pay grade as I am still in the Watch and Wait mode.

I really enjoyed reading your story. It sounds like your attitude is very healthy. It also looks like you will get a great outcome from your treatment.

Again warm welcome and I will let others who are more knowledgeable about your questions take over....:)

CallmeT profile image
CallmeT in reply to Pacificview

Hi Pacific, thanks for the welcome and yes, no 'wading' here (I love the analogy). One afternoon I went for bloodwork, the next day I got my diagnosis and a transfusion, and the day after that I was sitting with a specialist at a cancer center. It was a huge shocker but as we educated ourselves and found groups like this one, the doom and gloom started to lift and we could see clearly that life will continue.

Emerfly profile image
Emerfly

Welcome New Guy , I am in W&W so I can’t offer you any info regarding your treatment . There will be plenty who will . Meanwhile glad you are doing well . Take care . Emer

Jacksc06 profile image
Jacksc06

Hi. Welcome to the family. Your positive attitude is inspiring.

Wheatkings profile image
Wheatkings

Hi T - thanks very much for sharing your story which I read with interest. Per our previous exchange, there are so many similarities in our journey and of course differences. As others have posted previously, with your markers, you have a 55% chance of a functional cure so may never need treatment again. Glad your numbers have recovered nicely from your pre-treatment blood work. Being in Ontario as well, I also don’t have access to the MRD testing and so my doctor has suggested that I complete my cycles 5 and 6 of FCR to give me the best chance of a long/deep remission. All the best to you and thank you again for sharing!

CallmeT profile image
CallmeT in reply to Wheatkings

Hi again Wheatkings, I have not seen anyone put it into percentages but I do understand that there is a good chance remission for me will last a very long time. I am however, being cautious with my expectations because I would rather be pleasantly surprised by some extra years than extremely disappointed by having remission cut short.

I have trust in my specialist and my team and will follow their orders, it's just nice to have some background information each time I go in for a visit.

sun_flower profile image
sun_flower

Hi New Guy,a very warm welcome you have come to the right place here there's always someone to listen and no questions considered silly, we are all like long time friends this place has been a great comfort to me , luckily l am still in watch and wait, take care maggie

devonrr profile image
devonrr

Only 5 cycles of FCR for me as I was told I was in remission after cycle 2. I was happy with that as there are risks of secondary cancers after chemo and the more you have. A risk , not a certainty!

Little testing in the UK unless you’re in a trial.

5 years in remission so far with totally normal bloods at present.🙂

CallmeT profile image
CallmeT in reply to devonrr

There's a risk in everything in life, but if we did not take risks there would be no life :)

Hopefully 5 years turn into 10, then 15... good luck!

Jm954 profile image
Jm954Administrator

Hi there and welcome

You asked if you needed all six treatments and we can't answer that, only your doctor can. However, I can tell you that only 2 is probably not enough to give you a long remission and that has to be your objective. Your first treatment is the most important and likely to give you the longest remission so you really need to get it right.

After 3 courses the doctors will have a good idea if it's working well and the further courses are given to consolidate your response and provide a really deep remission which will last as long as possible.

However, if your blood counts are struggling and your counts are slow to recover then they may make the decision to stop earlier than 6 as FCR can be hard on your bone marrow but if you're recovering quickly then it's almost certainly better (in terms of depth of response) to have 4 or more.

Jackie

CallmeT profile image
CallmeT in reply to Jm954

Hi Jm, thanks for your comments. I'm certainly not suggesting that 2 is enough, I'm just speculating on the future and trying to gather information. I did bring up MRD and successive treatments with my specialist and she was very clear, we do 6 treatments. Still I hope to revisit this after treatment 3 or 4 as things are constantly changing in the Leukemia world.

I rebounded pretty good after the first treatment and I'm actually excited to go in for bloodwork before my next treatment to see where I'm sitting. As noted before, I do trust my specialist to suggest appropriate actions for me, and so far I'm super happy with the results.

GMa27 profile image
GMa27

I had 3 cycles of IV FCR. My hematologist had me tested - BMB, scan & blood work. My specials insisted I test after 3 especially if nodes disappeared and blood levels were good. So grateful I could stop. They didn't want me to continue. My hematologist doesn't really focus on MRD...she just concentrated on marrow clear & my blood levels were great. In remission almost 3 years. Doing great. Had port removed 5 months after treatment.

I hope you are able to stop if ur levels and marrow are good. 🙏💕

Ellieoak profile image
Ellieoak

Hi. And Welcome! Your story was very positive. My doctor also is of the mindset that MRD is not that important. It is what your blood says. I am glad that you are doing great. Stay safe, Anna

WinJ3 profile image
WinJ3

Hi, Welcome to the family! Thanks for sharing your story. It is very positive and inspiring. Sorry you missed the W/W journey 😊

Win

CallmeT profile image
CallmeT in reply to WinJ3

Hi Win, thank for the welcome. No messing around here, straight into battle :)

very profile image
very

Hello callmeT , my husband had 6 rounds of FCR in 2016 and has been in remission for the last 5yrs. He did have several infections in the first 12months post FCR but like you is a positive person, I'm the one that worries. He was diagnosed at the age of 52 and now 76. I do think it takes a while for your immune system to return to normal, he has just had a consultation with an immunologist, and his hemoglobin back to normal.I wish you all the best with your treatment.jenny uk

CallmeT profile image
CallmeT in reply to very

Hi Jenny, you actually touched on something there, it's not just us the patients who suffer, our spouses suffer immensely as well. I'm sure your husband appreciates you as much as I appreciate my wife. She is definitely the worrier as well but if it wasn't for her I would not be on this forum, she is always looking out for me and found this wonderful group.

That's great news about your husband, and that he endured chemo so late in life and came through well. I hope his luck continues for many years!

Floxxy profile image
Floxxy

Hi, my story is very much like yours. I was diagnosed just over 3 years ago, stage three, and had FCR shortly afterwards. I had a fairly easy ride with horrible cough for a few days after the Rituximab and very low neutrophils (was hospitalised when they went to 0). I felt sick days 4 and 5 but for 2 weeks at the end of each cycle I felt fine. I did have to have Zarzio injections because of my low neutrophils. I have now been in remission for 18 months and feel fine. My neutrophils vary between 1.7 and 2 but my Oncologist is happy with this. If it wasn't for Covid I would be able to live a reasonably normal life. With the new treatments for CLL available now the future looks more positive. I'm not MRD negative but have regular blood tests and have excellent medical team only 1 mile away from where I live, I'm very lucky.I hope that your treatment continues well and that you have a go9d outcome. Good luck. X

CallmeT profile image
CallmeT in reply to Floxxy

Hi Floxxy, I did Grastofil injections after my first round for the same reason, low Neutrophils. After treatment they did come back up, still low but no longer dangerously low.

I believe there is always progress in cancer research. In the back of my mind I keep telling myself that by the time the CLL decides to rear it's ugly head again later in my life there will be a cure for this disease. It certainly doesn't hurt to dream! I am happy to hear about your remission and hope that it last many years!

Floxxy profile image
Floxxy in reply to CallmeT

Thank you I hope that your treatment goes well and that you have a long remission. X

Slowmo457 profile image
Slowmo457

Hey T , I hope your treatment gives you many years of Remission or even better Cures you. 🙏

Hi T~I am so glad you are feeling well! Your thorough post will help others on this journey as does your optimism. I can't reply to any of your concerns as I am a new member of this community on the journey with my husband. I can say that I send prayers & well wishes your way for continued health & happiness to you and your wife!

bennevisplace profile image
bennevisplace

Mr T, it seems you're on track.

In the UK too the general rule with FCR is to see it through to the six 28-day cycles/ rounds (the term "treatment" usually refers to a course of several rounds, or to a particular therapy). In the UK the course could be curtailed if side effects become intolerable, then the patient might be switched to a different drug/ combination. I was in a clinical trial and completed six cycles of FCR.

As you probably know from reading these pages, patients in the US frequently do fewer than six cycles, the course of treatment being completed if clinical signs are good and no CLL cells can be detected in blood or bone marrow. Even so, three cycles is the least I've seen for a course of FCR. TBH, I don't know if this ever happens with UK patients, although the NHS protocol allows for a "maximum 6 cycles" on restaging. Perhaps the Canadian protocol is similar?

So it looks to me that JM954 is correct (as always 😊): blood values after two cycles are not enough evidence of job done, even if the clinical signs are good. Also, I wonder if the transfusions you've received may be blurring the true picture?

CallmeT profile image
CallmeT in reply to bennevisplace

Hi Benne, thanks for the insight. Perhaps I have been using the terms incorrectly but yes, essentially protocols are the same here, 6 cycles @ 28 days regardless of bloodwork, issues aside.

I have read several scenarios where FCR was stopped after 3 rounds, this is what prompted my initial question. Still I am most interested in a deep/long remission and will follow my doctors orders as that is sure to give me the best shot at it. Round one was a little tough but not terrible, and round two went by virtually unnoticed so I am very optimistic that the rest of the rounds will go smooth and I can forget about all this for a long time.

bennevisplace profile image
bennevisplace in reply to CallmeT

Best wishes T.

MyCLLJourney profile image
MyCLLJourney

Be careful! I had CVP back in 2012. Now I have an extremely rare type of cancer called sarcomatoid carcinoma (just diagnosed last Friday) of the urinary bladder. My urologist mentioned something about its due to my chemo back in 2012. I did some research and found out that the C in CVP is a cause of my new cancer. That is the same as the C in your FCR. It's the only cause listed that even applies to me. 😟 I'm surprised they are still using that for CLL, because of this potential. CLL is a very manageable cancer. This one is NOT. There is only one study I can find for it and there is no regimen for treatment. Prognosis is poor. I'm not trying to scare you, but rather give you knowledge. You may want to talk to your doctor to determine if there are things you can do to try prevent this cancer since it sounds like you've already had treatment. I had 6 treatments with C.

CallmeT profile image
CallmeT in reply to MyCLLJourney

Wow, I'm so sorry to hear about your diagnosis. Best of luck in beating it! Thanks for the heads up too, I will have to look into that.

CLLBGone profile image
CLLBGone

Love your let's get down to business optimism coupled with let's make life difficult & complicated for CLL to exist in my body. Rock on . . . . . . . .

Pin57 profile image
Pin57

Wow quite a post T. I can’t relate to your case (W&Wer I am) but as you already see, you have a strong community here of others who like you “been there” n have provided helpful replies. Glad you found this website. Welcome aboard!

Stavrou1 profile image
Stavrou1

Big welcome .. Glad you shared your story. Very positie to read. Hope all goes well . 😊

Big_Dee profile image
Big_Dee

Hello CallmeT

Perfectly normal reaction to being in your second rounds of chemo. I had same question, I asked do I really need more than 2 treatments of B+R when my blood numbers were mostly in normal range after 2 treatment cycles? All the doctors said yes. I continued for next 4 rounds of B+R which were easier than rounds 1 and 2. Here I am 2 1/2 years after start of treatment and after blood work up 3-4 weeks ago, my CLL Specialist is telling me I my well never need treatment again. I am un-mutated. Blessings.

CallmeT profile image
CallmeT in reply to Big_Dee

Hey Dee! Thanks for the mental boost! I'm very happy that things are looking good for you and I hope I get the same result! Cheers!

Wiganmc profile image
Wiganmc

Hi T I finished FCR in February, should have been January, anyway cycles 1-3 a bit of nausea, and fatigue at 2.30pm powernap needed but I was expecting worse, 3 upwards gradually became a little worse still handled pretty well, cycle 6 delayed by a week low platelets and hb, consultant said blood is not recovered enough, got cycle 6 two weeks late but that was still within flair parameters time scale. Outcome is I've been monitored monthly bloods, recovery very slow predominantly platelets /hb but in the right direction (small increments), I have no visable cll in bloods had ct/bone marrow last week, got to wait till next month to find out if they are clear, I still have a nasty itchy rash which is said to be drug related, although they stopped all meds 8 weeks ago, but it's still very prominent and dermatology appointments to follow. Every one is different as previous posts prove, rest and water is the way I learned to deal with it trying to power through the fatigue set me back, from the great poem 'if today you can't climb a mountain climb a hill instead' good luck on your FCR journey regards TONY Mc💪💪🤞🤞👍

CallmeT profile image
CallmeT in reply to Wiganmc

Hey Tony, thanks for the note. I too had a rash for a while after my first round and my skin felt like dry leather but fortunately that faded and didn't return for the second round(not yet anyway). I'm keeping my fingers crossed for you for a quick recover and a long remission, sounds like you have worked for it! Keep fighting!

ksteinberglewis profile image
ksteinberglewis

Thank you for sharing yourself so completely. I totally get what you are saying. You said you trusted your doctor and you can get a second opinion. Between communicating with all the doctors, you will be able to make an educated decision. I can tell you that I took Rituxin for anemia and it didn’t work. Steroids kept me alive until they tried Gazyva which did work but I needed to go through the whole treatment, (no matter how I felt) to make sure my immune system would not attack my red blood cells. I am glad I did it. It has been two years and I feel fine and my numbers are good and I don’t have to see the doctor for 6 months when I as having blood drawn every other day. Hang in there

CallmeT profile image
CallmeT in reply to ksteinberglewis

Your story adds to the fact that everyone is different, funny disease this is. I'm happy to hear that you got through everything in the end and it's working for you! Not seeing the doc for 6 months... something I dream of right now.

Zia2 profile image
Zia2

Pretty amazing. You’re so positive! I can’t answer but I just wanted to say I’m happy for you. Thanks for posting.

PJ60 profile image
PJ60

Hi T. It depends where you live in Canada. In Calgary at Tom Baker Cancer centre they test for MRD after four cycles of FCR and earlier if your blood work is low. I had FCR in 2020 and they had to reduce my chemo drugs three times, and for round six they removed my cyclophosphamide due to bladder problems. Glad to hear you are doing well!

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