I was diagnosed with cll earlier this year,with bizarrely high wbc,but still really enjoy an active life. I'm reluctant to take treatment as it seems to actually cause the symptoms of cll which I don't at present have.I am anaemic, and taking any drugs apparently makes it worse, so I'm reluctant to give up the good quality of life I have in case it is permanently destroyed. Has anyone on here regretted having treatment , several friends of mine regretted having chemotherapy in the past as it made the last years of their lives. miserable, and didn't extend their life.
Ano regrets?: I was diagnosed with cll... - CLL Support
Ano regrets?
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PACWOMAN
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Pac woman I have no regrets taking treatment. Treatment likely saved my life. The good quality of life you have has a good chance of staying good with treatment. Without treatment, when the time comes, the symptoms your advancing Cll will almost certainly rob you of your quality of life.
Treatment is no guarantee and I am sure you will find some who wish they had not treated. None of us want to have Cll or have treatment.
Some if the triggers for treatment are platelets below 100, hemoglobin less than ten and lymphocytes doubling every six months. The rising lymphocytes will eventually crowd out your platelets and hemoglobin. You will start to feel anemia then
We don’t want to treat early But we do want to treat when we are strong and healthy enough to make it through treatment
Everyone decides their course, it’s our bodies, we decide If you are reaching any number of treatment triggers and don’t treat, your Cll may kill you You can’t sugar coat that Cll is a treatable cancer Without treatment, life expectancy goes way down for those who meet the criteria to treat now. Good luck to you with any decision you make. I am not a doctor and these are just my lay opinions, not meant to be medical advice which I am not qualified to give.
I don't regret treatment one bit! First of all, chemo isn't necessarily the only course available to you (depending on where you live, of course). I had one of the newer non-chemo medication combos and it immediately improved all of my symptoms, and a year later I was cancer-free!
That said, if you don't have many symptoms, a high WBC doesn't necessarily necessitate treatment yet. You should be in "watch and wait" for the time being.
A last thing: Treatment for CLL does not bring about worse symptoms, typically. I'm not sure where you're getting that info from, but CLL treatment is considerably different to many other types of treatments for other cancers that can indeed hurt quality of life.
i have read numerous posts about the side effects of treatment on here, they sound much worse than having cll.
Bear in mind two factors:
1) People who do well on treatment have nothing to post about. (If you look, you'll see occasional comments from members on treatment who report no side effects from their treatment)
2) The alternative to the very effective treatments for CLL is death. I would have either bled to death from internal bleeding or from organ death from lack of oxygen nearly 3 years ago if I hadn't had treatment.
None of this community's admin and volunteer team would be here today without modern CLL treatments. What alternative are you offering?
Neil
I understand - do read my reports though; my treatment was absolutely easy, and I only suffered for about 2 days of it! It was far better than the months of fatigue, night sweats, extreme weight loss, and not being able to do certain things because my platelets were so low that bleeding out was a risk.
Hello PACWOMAN
Have you spoke with your doctor about why you are anemic? Your "bizarrely high wbc" could be crowding out your bone marrow and not allowing room for production of other blood cells. I have had one chemo treatment for CLL 4 years ago and I am still here due to that treatment. I was treated as my very high WBC of 197K which was reducing production of red blood cells and platelets meaning my future would be organ failure due to oxygen levels or internal hemorrhage due to lack of platelets. Discuss with your doctor for facts. Yes, chemo is scary but not the same for all cancers. CLL patients have enjoyed good results, but not always an easy road, there are many treatment options. Blessings.
AussieNeilPartnerAdministrator
May I suggest that you continue to educate yourself about your health with respect to CLL from our pinned pages: healthunlocked.com/cllsuppo...
Further to my earlier comment that your WBC and hence presumably your Absolute Lymphocyte Count is half way to the record I know of, here's an old post of mine where I share information that CLL cells are small (just a bit larger than red blood cells, which outnumber them 1,000:1 in someone without CLL), so they are unlikely to be a concern.
healthunlocked.com/cllsuppo...
My specific concern for you is in respect to your statement "I am anaemic, and taking any drugs apparently makes it worse." Your GP is very used to investigation the cause(s) of anaemia. I would be interested in whether your anaemia was investigated by your GP and what was found and which drugs were prescribed. If you share this information in another post, then members may be able to suggest similar drugs with which they had little to no problems. Worsening anaemia is one of the triggers for beginning treatment for your CLL - when your haemoglobin falls below 10, but there can be other causes, which should be ruled out first. What is your latest haemoglobin count?
I've had treatment, which was highly successful; I have a better haemoglobin count than from several years before I was diagnosed. My falling haemoglobin was one of the indications I was nearing the need for treatment and to my regret, a delay in starting treatment (out of my control) made treatment tougher for me. Prior to treatment, despite maintaining my fitness, I was finding that my anaemia resulted in strenuous activities making me feel ill. Importantly for your consideration, I needed two red blood cell transfusions to get me through the start of treatment; the time when the CLL treatment hasn't yet had time to clear out your CLL infiltrated bone marrow and treatment is slightly suppressing bone marrow production.
I note you live in the UK. Are you aware of the transformation in CLL treatment in recent years? Newer treatments are much more focused on the CLL, so there is less impact on your quality of life. Personally, my parents lived into their 90's and lived independently until about the time they entered their 90th decade of life. I was diagnosed in my early 50's and I'm anticipating matching my parents achievement, something I would not be able to achieve without occasional treatments for my CLL.
Neil
Thanks for your reply Neil, I looked at my blood test results and my platelets vary 120-150, and he 70-76, so I suppose despite the high wbc that is why I still feel OK.
My platelets improved for a low of 29 to your range from treatment, with my last test into the normal range.
What's your He result, hemoglobin? I ask because haemoglobin is commonly abbreviated Hb and a range of 70 to 76 is serious anaemia. If it drops below 60, you risk organ damage.
Neil
Sorry, meant hb 70-
No, I am probably only able to write this because of treatments
I'm currently in treatment, starting cycle 5 next week. I am not sure if I would still be alive if I hadn't started treatment in July...I don't think so...I was very very ill and I'm feeling better than I have felt in a very long time.
Hi I do not regret to have refused any treatment 5 years and 8 month ago.
I m alive , and my lymphocytes decreased.
My haematologist told me last consultation I do not need treatment now, but watch and wait.
Thanks for your encouraging reply, I have always had faith in my bodies ability to self heal, but have only just realised that it's not all about a high wbc.(702k!) My platelets and hb, I are ok, so hoping I won't need treatment yet. I hate putting any unnatural substances in my body, mainly because most drugs seem to cause more problems than they cure. I still suffer ptsd from watching a good friend having chemo, when I looked up and saw cyanide written on the bag of poison being dripped into her veins I wanted to scream STOP! . On what planet could anyone with half a brain think that was a good idea for someone who was dying? If it was Victorian times theywould be arrested for murder!
I'm curious regarding what cancer your friend had, because to my knowledge the only commonly used cyanide treatment for cancer is apricot kernels or the man made equivalent of the active ingredient. Per: cancerresearchuk.org/about-...
Laetrile (amygdalin or vitamin B17)
Laetrile is promoted as an alternative cancer treatment. There is not enough reliable evidence that it works.
Summary
- Laetrile is a man-made form of amygdalin, a plant substance found in some nuts, plants and seeds of fruit.
- Claims that laetrile or amygdalin can treat cancer are not backed up by research.
- It contains cyanide, a poison and can cause serious side effects.
Neil
how is your spleen now?
what are your immunoglobulins numbers? (IgM, IgA, IgG) Did you get a bone marrow biopsy/aspiration over the past years? Where did your CLL cells go to , they shrunk, disappeared, all by itself, without treatments other than you eating cholesterol fueling eggs ? Aren’t specialists / docs interested in your case ?? What are your markers? (un or mutated, deletions or none, CD38/zap70 etc etc )
how is your spleen now?
Hi my immunoglobulins are low (in September) : G = 3,69 A= 0,39 M= 0,08
Never had bone biopsy
Lymphocytes decreased 81730 in September
My haematologist was very surprised, but he think I will need treatment sometime. ( he also told me this 5/6 years ago)
I ate eggs for Haemoglobin only.
Maybe my lymphocyte decreased because I avoid all polyunsaturated fats for 5 years , I m not sure ( have a Look at Ray Peat articles on toxic vegetable oils, it seems they are immunosuppressive)
I do not know my markers ( never had) ( I remember CD38 were low 10 years ago).
My spleen is enlarged, but no pain.
I’m fine except bad post shingles pains ( shingles in may )
Next blood count in December.
PS : My HDL and LDL are perfect
Good luck, I hope you never need treatment and stay well and happy
My hubby is the one with CLL. He is half way done with treatment by v+o. He was on watch and wait for6 years and the effects of his cll was gradual and insidious. He started having more infections, he had odd rashes, he didn't recover quickly. He was tired and grumpy and didn't breathe well. He had ringing in his ears and poor hearing. None of these alone are big deals, many are considered aging issues. But together, even with "perfect" blood numbers, it was time to treat. Some people (even doctors) still call this "chemo" ( it is not) and infusions are required. Hubby has had to do certain things to avoid excess side effects such as take some pills, get exercise and drink more water than he enjoys. But his symptoms improved IMMEDIATELY. He has worked his normal job except for one day and he feels better than the last two years. He sits in an office for several hours once per month has no "side effects" and lives normal life. It has been 6 mos of this and he will be done very very soon. He is thrilled and grateful for treatment. And so am I and our family.
So glad for you both that he is better
PAC woman I have absolutely no regrets about taking treatment I would have been dead a long time ago if I had refused. My quality of life has been excellent.
Jacques
I would have died mmmm 7 odd years ago without the newer drugs. If my CLL had happened to pop up even 2 years earlier than it did, I doubt I would still be around. Standard chemotherapeutic agents used in other cancers are not used for our cancer. So speaking with friends who had different cancers, with different treatments, isn't an accurate comparison.
My friend had her womb removed after suddenly bleeding heavily one night, which was caused by cancer. She was a very fit, strong person, and was fine until she had treatment. She was treated at Broomfield hospital in Chelmsford Essex, it was around 30 years ago. The bag that was being dripped into her arm said cyanide at the top, then various other substances.
I beg to disagree. She wasn't "fine until she had treatment", she was fine "until she started bleeding heavily" i.e. until her CANCER caused problems. Would it truly have been better for her, had she just bled to death that night? No chance to say goodbye, no chance to see if she could live longer with a reasonable quality of life? I won't deny that treatment can cause problems, but with imminent "death" being the alternate.....should she have been allowed to bleed to death that night, instead of attempting to stop the cancer? Did she call for help/take herself to the hospital, indicating she wanted to live when she started bleeding heavily?
FWIW, some drugs contain strings of letters that might look like "cyanide" to a layperson. For example, "sodium thiocyanate" is not "cyanide". There's a drug used in bleeding disorders called "Cymin" which isn't cyanide. If someone tried to take their own life by swallowing cyanide, one medication used to treat it is "Cyanokit". Are you sure the bag didn't say "caution-biohazard-chemotherapy"? Or something else? I really have trouble believing an IV infusion label said "cyanide". In our shock/disbelief during urgent medical issues, it's hard to remember everything correctly.
PACWOMAN, to which I'd add that assessing the benefits of modern targeted therapies for CLL treatment on drugs for which the biological understanding of cellular functioning were only being discovered 30 years ago, with a poorly remembered treatment which was highly likely not cyanide and didn't cause the bleeding, did is an extremely unfair comparison. You stated "My friend had her womb removed after suddenly bleeding heavily one night, which was caused by cancer."
It seems that you are afraid of starting treatment and with haemoglobin of 70 to 76, honestly, the sooner you start, the easier you'll find it, if not for you, for your family and friends who will otherwise struggle with the anguish of your otherwise probable premature passing.
Neil
HI Neil, you sound very knowledgeable about cancer treatments, are you a doctor? I went to see my consultant yesterday, and agreed to try taking Calquence, but still not sure if I really want to, and very worried that it might cause permanent damage to my immune system. What I don't get, is if it kills all blood cells randomly, how are you going to be better off? If my rbc goes lower I will be dangerously anaemic, and if all blood cells are lower won't they grow back in the same ratio of too many white ones? Or does it actually target the baddies? Still confused, and would like your opinion please.
Hi PACWOMAN,
I'm not a doctor, but I've been studying CLL for nearly 14 years. Calquence targets the baddies very well and with as little effect elsewhere as possible. Technically it's a second generation BTK inhibitor.
Beginning Calquence now can save your life. You are seriously anaemic and without treatment, that anaemia will only get worse. CLL is continually damaging your immune system. I know both of these as facts because that is what CLL did to me. My immune system is the best it's been in over 16 years and my haemoglobin is better than it was over 26 years ago when it was healthy. My haemoglobin got as low as 78 during treatment and it's now over double that.
Calquence selectively removes your CLL and unfortunately, to a lesser extent maturing B lymphocytes. That's because it was cleverly designed to target an enzyme that is mainly found in these maturing B cells and CLL cells, called Bruton's Tyrosine Kinase (BTK). Calquence neutralises the function of BTK. It inhibits it. When BTK is inhibited the CLL cells and unfortunately some healthy B cells die.
Calquence can have a mild effect on the bone marrow's ability to make blood cells, but your CLL is already doing this. That's why you have serious anaemia. I'm being totally honest with you when I say that for the first couple of months of taking Calquence, you might feel worse and your immune system may not work as well. Once the Calquence cleans out enough CLL in your bone marrow to compensate for that overall dampening effect on your bone marrow, you should start to appreciate how tired CLL has gradually been making you. It's been impacting your bone marrow slowly a little more each day.
My specialist informed me that part way during treatment, my immune system was better than it was before I started treatment. My treatment included two other drugs besides Calquence that selectively targeted my CLL, venetoclax and obinutuzumab which sped my recovery.
Neil
Thank you so much for your prompt reply Neil, the consultant didn't explain that Calquence does target the baddies more than the goodies. I feel happier about taking it now, and will try and stick with it for a few months at least if I can. Should be starting in a few weeks, so I'll give an update. I hope that you continue to stay well, best wishes.
Thats great news. Our community will be very interested in your update. We probably have a few thousand members who are taking or who have taken Calquence or the first generation BTK inhibitor drug ibrutinib which revolutionised CLL treatment - and that all began over 10 years ago!
I suspect you'll soon be wishing you started on Calquence many months ago.
Neil
My friend was fairly happy after the operation to remove her womb, and although weak, was enjoying life. She didn't become ill until several rounds of chemo, and never recovered
I understand. If this was decades ago, she probably had older chemotherapeutic agents, which aren't really super specific as to which cells they can kill. Those older drugs killed "rapidly dividing cells", which includes the cancer but also unfortunately affected other rapidly dividing cells like hair, GI (hence the nausea/inability to eat) and other cells. The agents used in CLL today are often more specific than the older drugs used for other cancers. Not all cancers can be treated with drugs that "target" certain key enzymes, like ours can, and the Calquence does. I'll mention that while many of have few side effects, or side effects that go away or decrease with time, a few unfortunately react badly. In case you happen to be one who can't tolerate Calquence, there are other options. I have had side effects to one treatment I couldn't stand after 6-8 months. Other people did not have these problems, but I did. Now I am on another that has very mild ones, for me. So please keep this in mind, just in case you happen to have a difficult time. There are other options. Please feel free to post any questions or problems you may have concerns about; people here also on Calquence will chime in if they have had the same problem, and how they resolved it, or if people think it might be something else instead. Glad you are treating your CLL before it makes you really, really ill!
P.S. Many in health care refer to the drugs used to "treat" a cancer, as "chemo". But it is not meant to mean, the older nonspecific chemotherapeutic agents. So if your docs or nurses start talking about your "chemo", they are referring to your prescribed "targeted agent" Calquence. It's similar to how they speak about a "heart medicine" or a "blood pressure medicine" or a "depression medicine"; they are referring to what disease/condition the drug is being used to treat.
I started treatment for CLL with a BTK inhibitor. Once I went on treatment, my quality of life became quite poor with debilitating side effects. I pushed through for a year and it just became worse. I lost 50 pounds (already quite thin) and could no longer work. I went off treatment but the drug had already caused the disease to mutate into something much more aggressive. My WBC were now doubling in a matter of hours and days vs months/years prior. Now I'm on a triple drug regime to control it and likely on a fast track to a BMT or CAR-T trial. I do regret going on that particular drug but not necessarily in my decision to start treatment. Statistically, most have a much better experience than I did. Still, these treatments are not always a walk in the park and there are risks, including a poorer outcome vs not treating and death. It is good to discuss options with a qualified specialist or two prior to the decision to treat. I got a second opinion before starting from a renowned CLL researcher. She laid out the risk of clonal progression as the primary reason for me to delay treatment as I was relatively young and fit and my Hemoglobin, RBC, Platelets etc., were holding up. It is also important to consider that the business model for the institutions offering us cancer treatments is based on selling pharmaceuticals. No advice is without bias.
what was the name BTK inhibitor treatment you took, your first line treatment? (the one that didn’t pan out so well for you, sorry to read)
Acalabrutinib. I’m on Zanubrutinib now.
Did the renowned CLL researcher you got a second opinion from and who laid out the risk of clonal progression as the primary reason for you to delay treatment gave you that advice prior you taking the BTK inhibitor (Acalabrutinib)? With other words (s)he warned you that that could happen, and unfortunately it did
Acalabrutinib, is chemo no? New to names of treatments , didn't pay too much attention to it up until now/recently - thanks
what do you think yourself why Acalabrutinib didn't work at all for you - what was the reason the renowned CLL researches warned you about putting your CLL in that risk category of higher chances going into wrong direction once on Acalabrutinib ? My apologies for all my maybe intruding questions. and I sincerely hope the treatment you are on now works well and remission is around the corner
The Acalabrutinib worked as intended. My WBC rose for a few months and then started to decline. My issue was clonal evolution which is independent of factors for resistance to the drug. The chance of it happening increases with time on treatment and this particular situation is very specific to BTK inhibitors. I knew the risk before I started treatment. I opted for a BTK inhibitor over Venetoclax combinations primarily because my start was at the height of the initial COVID and there was a push to keep people away from hospitals.
Thanks for your reply, I am always suspicious that like nearly everything else in this modern world that's driven by greed, drugs are more about making the pharmaceutical companies rich than anything else. I'm so regretting having an astra zeneca vaccine, I have never been ill in my life until I had that. I wondered why so many health care professionals wouldn't take it until I read a post in the Lancet stating it lowered and could damage your immune system.
I work in the industry and there is good reason to carry a heathy dose of skepticism with every interaction in a health care environment. I stopped taking vaccines after I became partially paralyzed with GBS from a TDaP shot. That shot also kicked off the rise in ALC that led to my CLL diagnosis. My primary doctor believes it caused my CLL but I’m more inclined to think it was more of the straw that broke the camel’s back situation. Likely a cascade of events that leads to the failure of the immune system to maintain DNA integrity.
I started treatment a month ago. mainly due to fatigue and not being able to do much. Have slight spleen swelling and some abdominal nodes enlarged. WBC was on target to double in 6 months. Of course side effects of OV treatment is tiredness. But I am feeling better and taking baby steps to get back to walking and gardening. Timing as far as insurance and age played a role in deciding to treat. No regrets from me.
I started treatment when my doctor suggested it because I had cancer and I trusted his judgment. If I can get rid of cancer or lessen its effects on my body I want to do so. Obviously it is up to you as to whether or not you start treatment. But most CLL specialists do not recommend starting treat unless they really feel it is necessary. If my doctor said I needed treatment, I would do it.
As Neal said, the only time you read a lot about side effects is when people have them. There are many people who never have any side effects and many more who had only minimal side effects. I dare say if you asked for a “show of hands” of how many people in this group have had treatment with minimal or no side effects, you would see many hands go up. If you are really worried about side effects, the longer you wait to treat, the sicker you could be and the less able you would be to handle any side effects. Your friend’s experience, while terribly sad, was 30 years ago. In the medical field in general and in CLL specifically, the breakthroughs in cancer treatments have changed dramatically. Don’t let that experience color your own decision on being treated.
BeckyL USA
Thanks for your reply, I was really keen to try Calquence as it says its a targeted drug, until I found out it's like most cancer treatments, kills everything and possibly gives you secondary cancer. I'm so frightened of losing my quality of life forever.
I wouldn’t go so far as to say Acalabrutinib kills everything. There are better options out there for initial treatment IMO but every situation is unique and that’s where guidance from a seasoned specialist comes in. In hindsight, I feel I started treatment a bit earlier than I should have but I’m a complicated case and there just aren’t good statistics around timing for starting the newer therapies. I think the conventional wisdom of holding treatment until absolutely necessary still holds until data proves otherwise.
I am about to start treatment after being on Watch and Wait for five years. I am very grateful for the opportunity. Many researchers and CLL trial participants have made it possible for me to die with CLL rather than of CLL. I don’t fear treatment. I see it as my next adventure with CLL.
My youngest son has Down Syndrome and Autism. When he was five weeks old and weighing 15 lbs, he caught RSV, a respiratory virus that caused his lungs to fill up with mucus rather than fluid. The doctors were able to save his life for which I am also grateful. It was not certain he would survive. As a result of the RSV, he has asthma.
We struggled with his asthma until he was three. None of our other kids had it so we really didn’t understand what we as his parents should be doing. We took him to an asthma clinic and they established a protocol for his asthma episodes, which primarily are caused by two factors: a viral cold or exposure to smoke. Once we began following that protocol, his asthma was under control. None of the medicines used were expensive and we still use that same protocol today, 28 years later.
The moral of this story is that the vast majority of doctors will do anything to help you. Yes, the pharmaceutical industry is interested in profit but if I work, so am I. I don’t consider making a reasonable profit as damming proof that the drugs for CLL should be dismissed.
With CLL, you are generally OK until you aren’t. Waiting too long for treatment could have serious consequences for you as treatment does stress you in some ways.
None of us wanted to have CLL but CLL generally runs its course no matter what we eat, drink, or how much exercise we do. It’s wonderful that you feel well now and are very active. I hope your watch and wait period extends for many years. There may come a time when you will welcome treatment.
Patti
Thanks for your reply Patti, I hope all goes well with your treatment. We will have to compare notes at a later date.
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