I am 69 years old and will begin my first treatment for CLL in a couple of weeks. I have not yet discussed with my doctor which treatment I will receive, but she told me I would have a choice between pills and infusions.
I'm writing this somewhat trepidatiously, but can anyone tell me how your life changed because of your treatment? Can you still live a normal life?
The main changes for me were the numerous blood tests and monthly infusions. I did spend some time in hospital with an infection but other than this, it was pretty much a case of life as usual. Good luck.
I didn't know it but I selected the infusions. I was presented a choice between "about a year and done" or "tablets forever".
Infusions are, Venetoclax + Obinutuzumab for 12 cycles. Each cycle is 4 weeks, so 4 weeks short of a year. The first 9 weeks are very busy with weekly treatments, then it's just a day at the start of each cycle. If it goes well that may be just one day every 2 or 3 cycles towards the end. Could be anywhere between 25 and 35 blood tests in the first 9 weeks depending on risk of TLS, tumour lysis syndrome, the B-cells die quickly and can cause kidney damage. Drugs are given to reduce urea concentration in blood, 1.5-2 litres (54-66 us fl.oz) of water a day should be drunk.
Venetoclax - BCL-2 tablets for 11 months starting at week 4 of first cycle.
Obinutuzumab - IV monoclonal antibodies, 9 IV over first 6 cycles, 4 of them in first 3 weeks then first day of cycles 2 to 6.
I had to give up swimming for about 6 months until the infusions were over. I had pretty much given up going to live music events at the pub from the start of COVID. 55% have the side effect of neutropenia. This makes infection more likely and difficult to control. If I had had this it would have extended the time I wasn't allowed to swim and had to guard against infections. Side effects are generally well tolerated, in part because the end of treatment is a few months away.
Continuous tablets are BTKi drugs, either Acalabrutinib or Zanubrutinib. Appointments and blood tests are far fewer, if it's going well often once every 3 months. Numerous side effects, many halt treatment due to intolerability. Real world appears to have higher stoppage rates (~40%) than clinical trials (~<20%). This may be due to better clinical support on trials. Many of the early side effects diminish over time, or coping strategies are found but as it's continuous there is no end in sight.
ashpublications.org/hematol...
My doctor said pills for a lifetime OR infusions for 6 months followed by the pill for six months. Done.
This reply by Skyshark is absolutely spot on.
I’m currently on cycle 7 of 12 on O&V. My infusions have ended and I’m now continuing the V tablets until July.
Yes, it’s intense to begin with. I did have a bad reaction on first infusion, that’s quite normal but nursing staff know what they’re doing when that happens and the immediate fantastic results are just amazing.
I too miss my swimming and concerts but am looking forward to being in remission in July.
I chose the intense route for a year over the tablet a day for ever as that suited my lifestyle. Good luck with whichever way you go…
One thing that will be invaluable to you is to have a positive attitude to treatment and life. Be thankful that every day of treatment is a day closer to remission. Don’t sit back and think “I’ve got cancer” just think “I’m beating this” …and you will.
I really think that treatment choice is based on your lifestyle. Some people like a time-limited treatment so that they can be done with it and move on in life without thinking about CLL. However, that does mean that you will spend more time at your clinic for bloodwork, infusions, etc. Other people like that they can take a couple of pills at home on a daily basis and have fewer appointments with their doctor. Granted, the tablets are taken for an unlimited time until they can be tolerated, or a mutation develops, and they stop working. This could be over years. Either way you go, you can have a normal daily life with few interruptions.
The choice is truly up to you and your doctor. I chose to take the BTKis. I live a normal life and never really think about CLL. I just pop the tablets in the morning and evening. They have not affected my daily life at all. I see my hematologist every 3 to 4 months for bloodwork, which is what I was doing before treatment.
Whatever you decide, be sure to discuss all the side effects with your doctor and understand the schedule of dosing and clinic visits with your chosen treatment.
First I want to clarify that am in treatment yet, but I do think about these things regularly. In my way of looking at what type of treatment I would choose in my particular situation, and considering that none of the treatments available at the moment offer a “cure” obviously, the best we can hope for is a long remission. BCL-2 offer a deeper remission, but my concern is what’s next after they stop working. With BTK-i, the remissions may not be as deep, but for most people they work for a long time, and you also have the possibility of going into a BCL-2 treatment after they stop working. So in my simplified way of looking at things, I think I would go with a BTK-i as a first line option. I haven’t had this discussion with my doctor yet, because I don’t think I am near treatment yet, but one never knows…
HiI was diagnosed at stage 4 in November 2020 at the age of 56. Straight to a transfusion and O+I, I was in uMRD within 250 days. I am on twice daily Acalabeutinib and bloods are stable. Now at 60 I am a full time dad to my 7 and 5 yr olds and live a totally identical life as I did before covid and CLL.
Living life to the max.... even took the kids to see Santa In artic circle this Xmas.
Hi Steve,
since I have just been diagnosed (at the age of 46) and my wife is expecting our first baby, I am wondering if you had any problems with childhood illnesses. Did this aspect influence your choice of therapy? Have there been any issues with Obinutuzumab and infections? I will probably be in the w&w phase for a while, but I want to know what to expect. It calms me to have a roadmap 😉
HiTo be honest there wasn't much discussion as about choice of Therapy as I was diagnosed at stage 4 with 100% marrow infiltration. O+I worked a treat.
I will be honest , I have had no issues or serious infection, except for a SCC and many covid infections. The kids have all necessary vaccinations, non live versions flu and chicken pox. I have had pneumonia and shingles jabs. The kids bring home loads of bugs but I seem to be fine. I do take antibiotics 3 x aweek and antivirals every day... so I think they keep things at bay. I also get IVIG when needed and I keep GCSF jabs at home just in Case my monthly platelets drop.
I hope that helps, happy to answer any other questions
Cheers
Steve
Hi Steve.
Which antivirals have they given you?
Really interested to know which one.
Kate
Acyclovir 400 mg twice a day.
There wasn't much choice in UK in November 2020.
FCR/BR, Obinutuzumab with chlorambucil, and Ibrutinib. I'm surprised you got the Obinutuzumab as Ibrutinib was and is only approved as monotherapy for UK NHS.
V+O wasn't approved by NICE until December 2020. An astute doctor might have seen a draft of the approval and started early. The rest would start to offer it during the 3 month implementation period.
Thankfully I had my own private medical insurance so more freedom. I was diagnosed in second lock down.... my NhS referral came after my second cycle of Obinituzumab..... I doubt I would have made Christmas 2020 without my private cover. To caveat that, I worked in the blood cancer space for 10yrs
normal life except lowered immune system so keep away from crowds and more susceptible to colds, flu etc so have all vaccines also while on medication may feel more tired otherwise enjoy long life it won’t kill you
I started Calquence last spring and it’s goo going very well. My numbers haven’t settled yet, but I have no symptoms of CLL either. My side affects are minimal - very regular in the morning and I’m dizzy for some reason. I drink two propels a day and I’m fine. I’m 68.
when I was diagnosed 14 years ago treatment was a stem cell transplant. Now it’s a pill. The longer we live, the longer we’re going to live!
Trust your doc and team and try not to fret. Easier said than done, I know, but keep your usual routine and stay busy.
I've been on Acalabrutinib for just over 4 years. Numbers very quickly returned to normal and stayed there. Virtually no side effects. However I started having bone pain at 4 years so now on one tablet a day and holding stable. The biggest impact on my life has been the risk of infections particularly covid . I know some people on Acalabrutinib live life normally but they are on IviG infusions but that is not a gift the NHS gives most of us. So life is not normal on a BTKi even though I feel great. It impacts your immune system and I didn't produce one antibody to covid despite all the vaccines. If I had my choice I'd go for the short term option. Good luck with your decision.
Kate
I have had a great experience with my first year of treatment. I was W&W for six years, and was getting progressively worse each year. I began the drenching night sweats over a year from when my treatment finally started. After being on treatment for a few weeks, my drenching night sweats had gone away. I was getting sick very frequently, about once a month, in my last year before treatment, and now I was only sick three times in the first year of treatment. My energy had been draining more and more in the last three years before treatment, and now I'm pretty much the way I felt when I was first diagnosed seven years ago.
To be fair with respect to not getting sick, my Specialist started me on IVIG every four weeks before we started the pill. She told me that my Immune system was already extremely weak after six years, and the pill would weaken it even more. IVIG every four weeks, which I'll now be on lifetime (treatment doesn't improve the immune system), is the real reason I'm now not getting sick frequently.
I'm on Brukinsa, and its been fabulous.
Carl
I agree Skysharks description was spot on. I finished in May and feel quite well. Every 3 month check up to monitor. I am turning 75 in February. I also stayed away from crowds. Best of Luck to you! My best, Wendy
Everything will depend on your unique situation, we are all different. I personally was not given a choice as my haematologist said I couldn’t have the infusions, so I’ve been on acalabrutinib for past 3 years now and doing well. Good luck and hope whatever you decide works very well for you.
Dave
For me personally, the short answer is yes. I have found high intensity exercise to not really work for me anymore, and very frequent appointments are annoying during ramp ups of treatment. Otherwise my life is pretty great. Biggest side effect is anxiety to be honest.
We seem to all have our own journey with treatments we receive. Unfortunately I have gotten sick with each of my treatments, multiple infections, fatigued, headaches, generally unwell feeling. It has disrupted my life quite significantly but I have the most loving and supportive husband.
Others have done quite well with no problems.
I hope you get the latter experience!
What course of treatment you choose should not be based on "pills or infusions", in my opinion. It could be a factor, though. You might also think about a clinical trial if you can find one nearby.
To answer your question, My treatment in a clinical trial kept me very busy for the fifteen months. It was ibrutinib and venetoclax, both pills. I was able to live my normal life with a few exceptions from side effects. Most of these were treatable with drugs and under control.
We are all fortunate to have so many treatment options now. I hope and think it will all go well for you. Take care.
Do think about whether you want continuous treatment (pills until they stop working, which might be several years) or limited duration treatment (some combination of pills and infusions, more intensive but likely done in a year or two).
Then consider side effects of whatever they're offering. Typical ones:
- Neutropenia or immunoglobulin deficits (degraded immune system)
- Fatigue
- Joint/muscle/bone pain
- GI issues, usually not severe
- Skin irritation/rashes
Typically two things happen when treatment starts:
1) You immediately see a marked drop in ALC counts as the drugs take effect. This usually improves lymph / spleen swelling and makes you feel better.
2) You, over time, see zero, one, or a few side effects. They might be severe but usually not. You may decide they are manageable, or not. Supportive treatment for the side effects may work, or may not.
Then it's a matter of how bad are the side effects if any vs. how much of the cancer can you get rid of. One thing they do know - the more CLL you get rid of on first treatment, the better off you are long-term.
Lifestyle impact is usually some form of immune restrictions (think COVID rues) and some day-to-day aggravation, but probably not as bad as you feel pre-treatment.
I was diagnosed Christmas 2019. Commenced Ibrutinib March 2020 and Venetoclax on the Flair trial at UCLH. I quickly became Neutropenic and was treated with S.C inj of Filgrastim several times a week. While I would love to live a carefree life, I am only too aware of the risk of recurrent infections so made the decision to shield when Covid struck. I have remained virtually shielded since March 2020, as a consequence I have not had a single infection thus far. Meanwhile I am aware of fellow CLLers and healthy individuals who have had Covid and other infections multiple times. I believe that they are taking a huge risk to their health and long term outcome. The studies around Covid gather strength that this virus causes damage to multiple systems including Cardiovascular, Neurological, Clotting and blood anomalies, especially after multiple exposure to the Covid virus. I do not mean to be negative, rather realistic. By the very fact that you have CLL, your immune system is not going to be functioning well. This will be further impacted by any treatment. I hope that your journey is a positive one......and by being a member of this site you will receive really informative,safe advice ....... particularly from our wonderful and knowledgeable administrators. Good luck!
CLL treatment
Immune system changes during BTKi treatment 
Chemotherapy for CLL 
CLL diagnosis with Obinutuzumab and Ventoclax offered as treatment
