I have SLL version, Mutated, Trisomy12 & 13Q and a couple other less well researched markers. Enlarged (1cm+) nodes all over, the ones I can feel wax and wane and they bother me in a pressure/fullness sense vs actual pain. None have been imaged or confirmed by docs as concerningly large though in last 6 months I had an aux and clavicle pop quite large for a few weeks at a time. ALC has increased from 4.5 to 15.7, but took 413 days to double, then 312 days for next double. other blood tests fairly normal but I know that isn't unusual for SLL presentation. I have 3-5 "mini" sweats a night- definitely not drenching, but they wake me up. (I have a system where i sleep in cold room in winter or have fan directly on me in summer, so I toss off blankets and the cold or fan help to cool me down). So fatigue is my biggest issue and it has increased over time, esp the last 6 months to where I cannot work full time or do my normal activities . I am confident that it is not stress or depression or menopause and I have been tested for everything else. I am so eager to try to get back to my normal life so I can hike, travel, enjoy my kids and grand kids without hitting the daily 'unplugged' or sundowner fatigue. My CLL/SLL specialist is willing to start V&O if I want and has scheduled me for baseline CT and BM. So I am trying to decide whether to start treatment now or delay and continue to adjust my life around the fatigue/unwellness. I know I am ridiculously privileged to be in this position where I can make this choice, so much so that I hesitate to toss this out to this community. Here is my "pro" for starting treatment now- my husband (68) and I (62) are relatively young and quite fit now and are in this sweet spot of life where work is optional and its easy and fun to travel for adventure and to spend time with our 5 scattered about adult kids. So if I do the V&O year now we get it behind us and hopefully get remission when we can most enjoy it. Also it seems intuitive and is important for me that if I have less cancer burden and am otherwise still fit I am more likely to manage the inevitable treatment well and get a good outcome. The "con" and doubts are- treatment is a serious business with risks, fatigue is somewhat subjective/relative, I'm fortunate enough to be able to adjust to fatigue demands and still have a nice life even if not want we wanted. Unless the BM test says otherwise my cancer load is still fairly low so maybe its prudent to wait for the burden to increase. I guess I am just crowd sourcing to this unique crowd a 'what would you do' scenario to help me crystalize where I am with this. thanks
Start treatment just based on fatigue? - CLL Support
Start treatment just based on fatigue?
I'm not much different from you with SLL and am also in the Atlanta area. I suspect I'm nearing treatment as well as I have some fairly large nodes and some Inguinal nodes that seem to wax and wane and are quite noticeable. My next appointment with my CLL specialist is in February and I'm curious what she'll advise as my blood tests are normal with latest ALC of 1.35.
I wrestle with the same pros and cons and my family situation is very similar. I'd like to put off treatment as long as possible, but having a predictable path forward would be helpful.....but they do say the 1st remission is the longest so I'd like to maximize that.
I sort of look at starting treatment like starting a microwave timer. Pick what ever cook time you like...15 years, 20 years etc. Once you start the 1st line the countdown has started and as long as new treatments are discovered you can add 30 secs, but eventually the microwave will ding.
With SLL the criteria to start is generally >10cm nodes or bothersome/painful nodes...or perhaps a node in a particularly risky area if the blood remains normal. My specialist told me pain my drive my need to start, but so far I just call it mild discomfort.
Not a great answer for you, but the weird reality of SLL.
Bigfoot
Thanks Bigfoot. The subjectivity/relativity aspect seems so front and center with this cancer. Like 'fatigue that interferes with normal activity'-- if I was a day to day caregiver or had a job that required me to be up and on my feet for much of the day I would have hit that marker 2 years ago.
I'm curious. So with a SLL Dx and normal bloods you've had no scans to date? I've actually had 2 CT, a MRI and 2 PETs since Dx. My bloods keep getting better, but my nodes keep getting bigger. I wouldn't say the doctors are scan happy, but they seem a little confused by what looks aggressive in node growth, but indolent on blood tests.
I had CT in year one and PET in year 2 . I have cervical, aux, pelvic and one or two very small abdomen enlarged nodes but docs didn't think any of them were very big or big enough to cause me problems. Spleen and liver normal based on sonogram earlier this year. I was told I was "asymptomatic" after initial dx even though the persistent symptoms I had for more than a year of fatigue, swollen nodes and elevated ALC was why I finally was sent to hematologist.
Hi TLSAtlanta,When it came down to it, I was the one that made the decision to start treatment. My Dr. At that time, put me on Ibrutinib. Stayed on that for 1 year, went back to old oncologist and he put me on V and O.
That was 7 years ago, In remission 4 years this month. I was very over feeling terrible so much of the time.
It's a tough situation- there are no guarantees either way. But, there is so much great research all the time and new medication. Best of luck,
Lorna
Hello TLS Atlanta. From what you describe, its sounds to me as if you meet the criteria to start treatment for your cll. Fatigue and night sweats are both b-symptoms that can justify starting treatments. It gets to be a bit of a judgment call with b-symptoms if they are serious enough to start treatment. I think it is largely a function of quality of life. You are young and have lots of stuff you want to do and it appears your fatigue is very much hurting your quality of life. I think your doctor is letting you make the call on how much your quality of life is impacted by your cll.
There are other causes for fatigue than cll, and you have not reported your hemoglobin levels. Doctors are more likely to relate fatigue to cll when our hemoglobin levels fall and we become anemic. But there are so many people with cll who have normal hemoglobin levels and report serious fatigue, that there must be other ways not totally understood how cll causes fatigue.
Aside from b-symptoms you appear to be having, you might fit another criteria to start cll treatment, extensive lymphadenopathy (swollen lymph nodes). That is typical with the sll version of cll. Although my wbc was off the charts when I started treatment, I just had a few nodes, one that hurt now and then. Even though it was just a few for me, I hated my few nodes with a passion because I could feel them and they were my constant reminder that I had cll.
Most of the new Cll treatments clear out the nodes in just a few months, mine were gone in two months. That alone made me happy to have started treatment. Aside from hopefully reducing your fatigue, I would imagine just getting rid of all of your pesky nodes would be a boost for you as well
Good luck to you. I cant give you advice on whether to treat now or not, I am unqualified to do so. I can say with what little I know about treatment guidelines and how treatment helped me, I would personally treat now if I had symptoms you describe.
Here is an article that might be interesting to you. Good luck.
The onset of classic “B symptoms” is a sign that the cancer may be active. Any one of these symptoms demands a thorough work-up. They are also a well-recognized and widely agreed upon as an indication for starting treatment of CLL.
Below is the official list of B symptoms.
Unexplained weight loss >10% of body weight in the previous 6 months
Severe fatigue (unable to work or perform usual activities)
Fevers >38°C or 100.4°F for at least 2 weeks without evidence of infection
Drenching night sweats (soaking the bed sheets) for more than a month without evidence of infection
cllsociety.org/cll-sll-pati...
"I hated my few nodes with a passion because I could feel them and they were my constant reminder that I had cll" This is spot on! This is where I struggle mentally thinking I just need to 'woman up' and find a way to not think about the nodes and be furious at them and my body for having cancer. Aside from mental/emotional aspect there is the awkwardness: without thinking about it I will rub them which means I can find myself in the grocery rubbing my groin and armpit breast area like a total weirdo (that's an lol more than serious complaint). Appreciate your response, it really helps with my questioning whether I "need" treatment vs just being a 'princess that can feel the pea'.
I'm in pretty much the same position when it comes to fatigue,except my hematologist won't even consider treatment. Her view is unless she can feel my nodes there's no problem. That doesn't stop me feeling them, especially when they interrupt body functions!
Just a thought. Have you had an iron panel done, specifically a ferritin blood test & thyroid levels checked? You can have iron deficiency without anemia although it's a stepping stone to anemia and until your hemoglobin levels tank it can still cause debilitating fatigue.
A sleep study could also shed some light, particularly if daytime sleepiness is an issue. My sleep apnea is mild, but my oxygen levels going into REM sleep made the Respirologist think the oximeter was broken, because they dipped so much. Conversely, the amount I moved around in my sleep shot through the roof. I have an Apap machine to help with the hypopnea. For a time, I was seriously concerned about early onset dementia.
Might be worth getting these types of things checked before you make a final decision on treatment. If iron stores or sleep deprivation is an issue for you, there's no guarantee that treatment will resolve the fatigue.
Best wishes,
Lynn
"Quality of Life" isn't something expressly stated in the treatment guidelines, yet it's more or less understood in medicine that if a patient "feels sick", you should consider treating. This concept holds for virtually every disease state, not just CLL.
My numbers were not yet at "time to treat" according to the guidelines at diagnosis, yet I planned to start treatment as soon as I reasonably could. I felt awful & couldn't function. I was making mistakes at work, I was so weak I needed help pulling wet laundry out of the washing machine. Forget cooking/wielding knives/carrying hot pans. Plus night sweats
If you can't do normal activities, and can't sleep through the night, IMO you should treat.
These comments from experience are all very helpful. Same as you with the work mistakes, easy tasks becoming harder and harder. Cooking - which I love doing and do easily- has been the one of the most frustrating things to deteriorate. Dinner has to be made in the morning now, otherwise its like a drunk monkey is in the kitchen.
If it were me, I’d treat. I have my own unique experience where during watch and wait my disease changed, it became more aggressive and I developed deletions which can make it more difficult to treat.
I think the adoption of time limited combination treatments is changing how we think about starting treatment. I think keeping your disease burden lower and manageable will improve your life.
Hi TLSAtlanta. I'm in the same boat as you. Fatigue is my biggest symptom. Or rather, shortness of breath. I don't fall asleep in front of the TV, but I am breathing hard after taking the stairs. And I've had to drop out of tennis.
Like you, I've got bulky nodes (including spleen) everywhere. To the point that I have off and on pulsatile tinnitus (I hear the blood whooshing in my right ear) and I have a permanent pain on that side of my head.
I have borderline night sweats. But keep them at bay by turning on the AC on every night. And I live in Montreal! I don't know why I'm so winded. My hemoglobin hovers around 100, sometimes below, sometimes above. I mention 100 because I believe that when you're below 100, it's a criteria for treatment.
Again like you, I want to live fully now while I'm still relatively young. The BIG question though for me is... if I were to start treatment now, given my intermediate risk markers (13qdel; unmutated), are there enough drug options available to string me along till I die of something else?
I want quality of life, but there's a lot to said for quantity too. I have an appointment with a new CLL expert mid-January. I'll let you know what she tells me.
I get shortness of breath too and none of the labs explain why (ie not anemic etc). I also fall asleep in front of the TV without fail but if its past 7pm I don't count that as abnormal. I think these new treatments are going to help reduce the worry that we run out of options before we run out of normal life span. My specialist said that they really only have 6 years of data on most of them- but from my looking at the studies its a very promising 6 years of data.
Hi,
I have no idea really other people here will have much better comments. But I would tend to think treatment might start based on rates of doubling.
as far as fatigue only I’m not sure any of my two treatments do anything about fatigue. I always thought they kind of contributed to it.
am I wrong?
Certainly your absolute lymphocyte count doubling in under 6 months is one trigger for beginning treatment, but in this instance, the guidelines encourage specialists to look for other confirming indicators, such as those B-symptoms cajunjeff included above. healthunlocked.com/cllsuppo...
TLSAtlanta, of relevance one of those B-symptoms is 'Severe fatigue (unable to work or perform usual activities)'
The triggers specialists are recommended to consider in the different CLL treatment guidelines are covered in this pinned post: healthunlocked.com/cllsuppo...
Unfortunately, treatment doesn't always resolve CLL related fatigue, though it generally improves it.
Treatment can certainly add to the fatigue, particularly after treatment infusions or when you are given oral treatment medications each cycle with the older 6 x 4 weekly cycles in BR or FCR chemoimmunotherapy. Nowadays in the USA, FCR is the only chemoimmunotherapy you should consider. That's in the rares circumstances when you are under the age of 65 (so you qualify), your CLL is IGHV mutated, is not TP53 mutated and doesn't have a complex FISH karyotype. Specialists have over 20 years of experience treating people with CLL using FCR and it was the first treatment proven to extend life expectancy, with some early trial patients now into their third decade of remission. Unfortunately only about 50% of those with the aforementioned favorable markers achieve very long remissions. FCR unfortunately comes with an increased risk of secondary primary blood cancers AML or MDS.
Neil
Thank you, Neil.
I agree/experience that bringing down that count does improve fatigue.
SLL can be more challenging because the labs are not screaming TIME TO TREAT! I have a few more intermediate to high risk markers than you do but that really doesn't mean much when the fatigue is so intense - and you cannot function normally.
I was so fatigued that after the effort to put together a salad - I did not have the energy to chew it. My eyes were closing on my long work commute, and my speech was slurred with fatigue by late afternoon.
I was tested for sleep apnea - which was classified as minor, and successfully used a CPAP machine - but the sleep was still not restorative. I lost weight, I regularly did gentle exercise (swimming, walking or marching), I had my thyroid meds adjusted, I saw a stress counselor - everything else that might contribute to fatigue was addressed.
I even tried Ritalin - and nothing helped.
My nodes were slowly growing all this time. When 3 CLL Specialist consults agreed it was time to treat, based on the degree of fatigue (with no other B Symptoms), I had a pre-treatment CT (which was only 3 months after my previous CT).
I was hoping to join a clinical trial (Elevate-TN) so CT's were necessary. The scan showed that in 3 months, my abdominal lymph nodes were now the size of a grapefruit, an orange, and a lemon (I call it my citrus basket!😉). That size, in conjunction with the extreme fatigue, indicated time to treat. I was staggering with fatigue - but had to wait 3 months longer for an insurance issue to be ironed out for the clinical trial - and I ended up getting the last available spot in the trial.
Five successful years on Acalabrutinib - then I had to stop the trial because PPI's for acid reflux/GERD were contraindicated with Acalabrutinib at that time. During treatment, I was given lesser acid reducers (which were not really helpful), and in 5 years of treatment - I ended up with two bleeding ulcers.
The original Acalabrutinib capsules needed some stomach acid to be effective (thus the contraindication with PPI's). I believe that has since been remedied with a new Acalabrutinib tablet, which is compatible with PPI's.
I've been back on PPI's and the ulcers have resolved.
Presently, I am back in Watch & Wait, with oncology labs and exams every 4 months. I had a CT at 18 months off of treatment, and lymph node size was stable. Remission is still holding closing in on the 4 year mark off treatment.
Best to you and on your decision of when to treat.
Hi DoriZett , Acalabrutinib is a BTKi - I understood all BTKi's are for life, and that you don't go into remission with them. Did you have other treatment, or is there something I don't know about BTKi's?
Thanks!
The original intention with the clinical trial was that you take BTKi's "forever", or until a side effect (like mine) causes you to stop, or you become refractory (disease progression while on treatment).
Since the "taking BTKi for life" plan can be a problem financially, or just in daily burden of twice a day medication/patient compliance - there are many studies combining 2 (or even 3) different classes of drugs for limited duration therapy (BTKi's and something else like Venetoclax). This gives the cancer a "one-two punch" - and hopefully studies will show we get longer remissions with certain combination therapies.
One arm of the 2017 Elevate - TN clinical trial I was in was Acalabrutinib and Gazyva. I was randomly assigned to the monotherapy arm, with just Acalabrutinib, the luck of the draw.
Regardless - once I had to stop treatment - my labs were/are close to normal, and my lymph nodes are near normal size.
Since BTKi's have only been around for the last decade or so - it is not fully known how long a monotherapy treatment remission might last. I am an outlier in having to stop treatment because that wasn't the plan, that is why the Clinical Trial team is still following my case.
Researchers know that monotherapy BTKi treatment is not a cure, and we won't even reach UMRD (unmeasurable minimal residual disease). But with BTKi's usually milder side effects, they can be well tolerated and manage our disease for many years. The goal with them was never remission (partial or complete), just keeping the disease in check with tolerable side effects, and keeping us alive, until the next better treatment comes along.
But this is how my case played out - and since my labs and nodes are "holding" - we won't rush into the next treatment until something changes to the point that we have to take action. Just like my original Watch & Wait period.
So it's back in Watch & Wait for me, with what is called a "partial remission".
The reason it is classified as a partial remission: With SLL - when a lymph nodes get as large as a grapefruit - the node gets stretched out (like hanging, stretched out skin when one loses a lot of weight). The node will probably NEVER go back to the original size - lymph node size being the guideline for labeling it a "complete remission".
Side Note: There is discussion about changing the guidelines for classifying a complete remission (CR) since this stretched out lymph node issue doesn't mean I didn't respond well to this monotherapy treatment - it just means I didn't meet the guideline for complete remission.
Remission - partial or complete - means the disease is not actively/rapidly progressing and is stable. That's where I am now at about the - 4 years off treatment mark. Because I am relatively young (I turn 63 tomorrow!), I will most likely need treatment again at some point. In the meantime, we will be adding to sciences knowledge by seeing how long this partial remission from BTKI monotherapy holds!
Hi DoriZett – It's great to hear about your partial remission. I've only been on Z for 6 months. In my view, 2x/day is hardly a burden. It takes 2 minutes at most. I could imagine so many worse regimes, or the alternative reality that it wasn't available. It's a blessing that it exists at all, and a testament to the advancements of science.... that I wish I never needed, but here we all are.
Do you know if there are trial that are investigating stopping BTKi's after x months? I see the reduced cost as a benefit to patients & the system, as well as that it might work for a longer period of time if we aren't taking it constantly.
mrgreentea - I agree that taking a capsule 2x daily was very manageable therapy. The side effects I had were tolerable and I would’ve been happy to continue on Acalabrutinib indefinitely. Especially with the high cost drug being available to me under a clinical trial.
The worst “side effect”/contraindication for me was not being able to take the PPI for acid reflux.
Technically, I should be able to go back on the ”new and improved” Acalabrutinib TABLET - which can be taken with PPI’s when TTT (time to treat) comes again.
I have heard some mixed “reviews” on the Acalabrutinib tablets, and we have Zanubrutinib now, so I will have to discuss with my oncologist which would be best for me when the time comes to treat again.
There has been some interest in studying the outcomes for people like me - who had to stop BTKi’s for other reasons - other than extreme side effects, or that it stopped working. I am not sure of the status of that research.
There aren’t too many people in that position - so it may take time to get a big enough pool of people to draw conclusions. Others may be able to weigh in on the status of that research better than I can.
In the meantime, limited duration combo therapy treatments (with and without BTKi’s) seem to be the research focus, and determining if there is a best “order of go” for treatments - that buy us the longest remissions.
Starting with the BTKi’s, and moving through those options before moving on to the next drug classes like venetoclax and pirtobrutinib.
Other more savvy on the cutting research/science might also weigh in here.
DoriZett
It seems like low hanging fruit to look at this, but it must not be otherwise they would be studying it now. I wonder what % of the scientific community is moving away from studying BTKs and focusing on the very promising CAR-T variants. Jump 20 yrs into the future and we will probably be able to get a diagnosis from our in-body sensors and get a one-time pill cure within a week...
Just fyi, my doc suggested that adding obinutuzumab to Z might be the next step *when* my numbers start to go bad/get worse. As I have CLL/WM/SMZL, this combination of drugs would cover CD5+CD20, which seems to cover my larger clonal populations.
This is all very interesting for me. I have CLL in the Central Nervous System. I was totally asymptomatic after diagnosis 1 year ago, but developed some visual issues that led to testing confirming the CLL is in my Central Nervous System. So I moved from W & W to ibrutinib within 4 months of diagnosis. I do have some vision and now some hearing issues, which the docs assume are from the inflammation in my brain (Leptomeningeal disease) but other than elevated blood counts, no other symptoms except FATIGUE. I have prided myself (at 73) in never taking a nap and now have to rest most afternoons. What is frustrating is that we do not know if this is from the disease or the drug. At the onset of the treatment, the intestinal issues were so debilitating, that I had no strength for anything other than the bathroom, but as those have 'settled' in, I was hoping the fatigue would go away. Just one year ago, I was working out several times a week and as I live on the beach, I had been walking the boardwalk a few miles most days. I don't do any of that anymore, as I can't find the strength for it. And I think the lack of activity perpetuates the fatigue. I head to the UT Rocky Mountains (from NY) in a couple of weeks for the ski season but am afraid that in spite of my ski skills, I'm too fatigued to try the slopes, which makes me sad.
Wow & your scenario is my reason to wait until you meet all the criteria to start treatment.
TLSAtlanta the assumption that your fatigue will be relieved is not necessarily true the opposite could happen.
I started treatment perhaps 6 months after reaching Stg IV. My WBC’s & Lymph Nodes were progressing from 2020, WBC 20-35 & the CT Scan showed an increase in size & numbers. 2021 I got Covid Pneumonia with a Cytokine Storm of mass destruction. By March 2022 was the Pan Sinusitis & WBC’s @45. By October 2022 Lymph Nodes were blocking proper Digestion of food & WBCs hit 81. I still waited from Oct 2022->April 2023 when I started treatment I met the criteria to start, Hgb 10.8 Plt 76 WBC 81, constant Night Sweats, Fatigue/Weakness & Mental Fog.
However I had horrible side effects from Zanubrutinib & a lazy Oncologist. I had chestpain by the 13th day & meanwhile nothing like that during the 13yrs & 8mos in Wait & Watch. I had Pleurisy that grew to Pleural Effusion/Pneumonia over the next 3 months & 4 doctors refused to prescribe antibiotics. Well I got antibiotics from an outside source, I improved but I could only tolerate 1/4 of the dose by then. I got my CLL Specialist which I highly recommend to use if & when you start treatment. They monitored me until I healed with her own Cardiologist & Pulmonologist. When I advanced to 1/2 dose all my numbers normalized but I was still symptomatic & had to stop treatment 6 months later due to continuous chest pain with Lung/Heart & Stomach Damage. I only lasted 13 months on treatment.
I am 6 months off treatment, my numbers are great & everyday I feel closer to my normal self. They call it a ‘medication break’ but I am still healing from the side effects. The Protonix I needed for the Esophagitis & Gastritis, the Steroids they gave me instead of antibiotics, the Respirator Steroids & the BTK inhibitors itself all contributed to severe bone pain & now I have bone on bone damage to an old Hip Fracture & use a Walker for long distances & a cane for short distances. I just had my 2nd Endoscopy to monitor my newly diagnosed Barretts Syndrome. I am off oral & respirator steroids. I’m down 12lbs of the 50lbs I gained. I completed a 90 day Cardiac Rehab Program & back to enjoying my $15,000 Homegym. I still take Lasix 40mg weekly tho.
Life is good but my neutrophils stay low which I know is a bigger issue with the short term more durable remission treatments. I don’t take vaccines but I do stay masked wherever I go & I have not had a Cold or Respiratory Infection in 1yr.
So long story short, I would deal with the fatigue & pesky lymph node until all bells & whistle say the disease is progressing because no one can predict your response to treatment so why rush it🤷🏽♀️ just deal with the devil you know…
GODSPEED 🙏🏾 & keep us posted
Are you anemic? I ask because people discuss treatment without addressing low lying fruit. How is your ferritin, B12 and Folate levels? I know that my later life fatigue, that I previously attributed to CLL, faded away when I addressed some dietary deficiencies. My lymphnodes also seem to dissipate when I cut out fatty foods, but that could just be me. Point being, if it were I, I would address my actionable blood markers before I seriously entertained treatment. But your mileage may vary....
All in normal range on iron. Discussed trying iron infusions just in case it worked but then former once dropped it.
I'd go with treatment asap if I was you. I was diagnosed with CLL at 59 in September 2018, on watch & wait for 20 months and now living a perfectly active life while taking 3 Imbruvica/Ibrutinib capsules a day for the past 4 years. Prior to going on meds my fatigue was life sucking. I hike, ski or snowshoe everyday with my wife, dogs and friends. Life is great. Good diet and exercise helps me enormously.
Hi fellow SLLer!
One of the very helpful concepts that I received from this community is the “Goldie Locks time” to begin treatment: not TOO soon, but before you get SO sick that you need treatment of the symptoms to be well enough to undergo treatment of the CLL.
I also have SLL, turning 60, didn’t officially meet criteria for treatment, but had a cluster of nodes that (collectively) were approaching 10 cm. My blood work was generally in the normal range. I had some fatigue and was down a few pounds and occasionally was hot and a bit sweaty at night. I attributed it to stress and post-menopause. My hemo-oncologist was less convinced, and suggested I start treatment before I get more ill. I took a few months to think about it and did a travel holiday, and then started V + O a couple of months ago. The first couple of cycles were quite busy with appointments at the Cancer Centre. I just started cycle 3, and I must say, the side effects have been minimal so far, and my fatigue is MUCH less. I’ve gained a couple of pounds and the (fairly mild) discomfort of the nodes is gone. The hot and sweaty spells are less frequent too. I’m confident that the decision to treat was the right one for me. My neutrophils are starting to drop (expected side effect) so I am careful to mask in public and wash my hands frequently. I avoid sick people and will report any symptoms of infection to my care team. Deciding is difficult when it’s not absolutely necessary and you’ve finally gotten used to the idea of “watching and waiting” with your cancer. Best wishes with your decision making!🙂
This is in your case one of those difficult questions where there isn't a right or wrong answer - until after you take your decision... and then, whether you consider the decision right or wrong will depend on the (unfortunately) unpredictable outcome.
I think AussieNeil is one of our best qualified people to comment on the pros and cons, and cajunjeff gives an excellent perspective too. I'll summarise my experience:
In 2011, aged 62, I was still working full time but getting very tired - I'd go to sleep on the sofa any time after 6pm... so I took early retirement. Three months later, I was diagnosed with CLL and as it progressed very rapidly, 5 months after that I had BR chemo treatment. After the first bout, I had neutropenia, got infected, and spent 9 days in the ICU. I also had a bad skin rash, but continued with three more treatments... after which the CLL had been beaten for the time being. (In fact, it hasn't returned - yet.) Then, just afterwards, I got a squamous skin carcinoma which (for reasons of incompetence and lack of capacity) wasn't treated promptly, meaning I had 3 major ops under general anaesthetic. (CLL sufferers are far more likely to get skin cancer.) Eventually, I got through all of that - and found that I no longer suffered from fatigue, and was more or less back to my 'old' self! Magic!
By now I get tired for other reasons - not CLL. I'm older and sleep badly (prostate doesn't help). But I get by.
The years I got back of 'normal life' were invaluable. I think that if CLL is seriously affecting quality of life, the questions to ask are:
1. How risky is treatment, and am I prepared to take that risk? (I didn't have a choice, but being the sort of person I am I would have anyway. )
2. What are the rewards? (Hard to be sure according to AussieNeil since not everyone shakes the fatigue... but you seem sure the CLL is the cause, so...)
It's an individual decision and the determining factors will be fear (of bad effects from treatment or concern it won't make a difference) versus hope (the idea that you'll get back to who you were, for a few years at least). Whatever you decide, try not to have regrets because your decision will be based on the best evidence and advice you can find at this moment in time - we can't see into the future.
Whatever you decide - and whatever happens - I'd like to wish you the very best for the season, and happiness and better health for the new year.
I guess have the obscene luxury of not having to choose yet myself, I would only say remission does not equal cure. I think of Neil's occasional reminder of how long it takes for the immune system to start up again. In context of wanting travel and adventure, visiting adult children just be prepared for maybe extra steps if results don't match expectations.
Yet, if you don't start and it's affecting your satisfaction with life and you meet enough criteria maybe it is time, is your doctor a CLL specialist, have you had a second opinion by one?
Hello TLSAtlanta
I always say, don't start treatment too soon as time in between treatments will get shorter and shorter, don't wait too long to start treatment as it can be a long-long road back. Blessings.
I am trisomy 12 unmutated. I was diagnosed and started treatment this year. Trisomy 12 mutated 13q will most likely respond very well to Venetoclax and Ob and give you a very long remission. My lymphocytes went from 160 to 4 in the first 24 hours after treatment. There are a lot of good treatments available now. You will feel much better physically and emotionally after you start treatment.
fatigue
Is Fatigue a symptom of CLL?
About to start treatment on Ibrutinib.
Acalabrutnib & Fatigue
Please share experience of venetoclax plus obinutuzimab or acalabrutinib mono treatment in an important survey
