Hi, I'm a 72-year-old USA male, no symptoms, but diagnosed a month ago with CLL through routine blood workup (plus the usual FISH-followup after high WBC noted). So I've been reading assiduously, and trying to figure out when/how to assemble a team. For me it's W&W, with another blood assay in 3 months. Markers include 17p-deletion, but IGHV mutated. Kaiser doctor predicts single-drug regimen of Ibrutinib will be best choice, when the time comes. Of course I'm very keen on keeping up with the most recent alternatives and possible clinical trials for Phase 0 patients, of brand-new possibilities, especially novel combinations. Since my HMO Kaiser's approach to patient-physician linkage is on the generic side, I'm thinking I should build a team that has a gung-ho young doctor who's devouring the latest developments, and also an older (wiser) CLL specialist who might have a defter touch with individualization based on long experience, and have a first-hand feel of how life priorities change with age. But maybe these distinctions are silly? I'd appreciate any thoughtful comments from you, my new-found and greatly appreciated comrades. By the way, I'm in good physical shape, maybe 15-20 pounds above best weight, but pretty active (now making sure to walk an average of 5+ miles a day). Thanks for having me in the fold!
Self-introduction: Hi, I'm a 72-year-old USA... - CLL Support
Self-introduction
Hi Felix
Welcome aboard. The first thing I’ll note is you have done a good job finding this community early in the natural history of your disease. I am younger than you at 58. My initial diagnosis was at 55. My mistake was putting my head in the sand and letting an older oncologist treat me with BR chemo. I needed treatment but BR chemo was a mistake. That being said, it has worked much better than expected especially since I am unmutated. Fortunately, you are asking good questions early on which is a huge plus for you.
Regarding your question about a younger or an older CLL Specialist. I’m not sure age is as important as simply having a CLL Specialist who by specialization is an expert in all things CLL. I have come across excellent young doctors and incompetent older doctors and visa versa. Also, CLL Specialists are usually employed at large teaching hospitals where there are typically multiple CLL Specialists employed. I think a good CLL Specialist will consult with others if they see something that isn’t clear cut. So the important thing is to have a doctor you trust. In my case I’m seen by a younger (+\- 40 I’d guess) CLL Specialist at Dana Farber. He is heavily involved in research, teaching and the clinic. I haven’t needed treatment since being seen by him but I have confidence in his abilities and also in his judgement to seek out other opinions if needed when the time comes. I guess I’m saying you need to find someone you trust because quite frankly this disease is so complicated and treatment options are moving so fast you simply will never be able to figure them out on your own. I’m rambling but hopefully you get my gist.
Good luck. You are headed in the direction.
Mark
Thanks for your kind and extensive reply, Mark! Yes, I've learned in these first few weeks how complicated and fast-moving a field CLL is. I think your comment about keeping the trust factor as the most important (when finding a doctor) is very wise.
A question I’d ask your current specialist is why Ibrutinib and not Acalabrutinib? The latter drug is newer typically with less side effects especially as related to the heart. There is more history with Ibrutinib but I think I’d want to heavily consider Acalabrutinib.
Good luck!!!
Mark
It's likely on Formulary, with acalabrutinib being non-formulary. Kaiser Permanente is an HMO in the US, they generally don't approve non-formulary agents until a Formulary one fails or gives unacceptable side effects.
I've had just one meeting with my specialist (our 2nd) since my factors were established. I, too. was surprised that he was quite definite about solo Ibrutinib, but I figure that calculations (as well as my HMO's protocols) probably will have changed by treatment date,
In fact, I haven't been able to have a detailed planning meeting with Kaiser Pemanente patient services about formularies, cost-assignment, etc. I like a lot about Kaiser, but the non-medical interface has always been clumsy and frustrating. By "always" I mean for the 54 years I've been an adult Kaiser consumer. They haven't been successful at obtaining Covid vaccine doses for their consumers yet, although I assume they've been able to vaccinate the most at-risk staff and patients.
IMO Formulary decisions in HMO's are driven by dollars, not current medical trends, unless/until overwhelming evidence against the Formulary agent appears. If the ibrutinib company is offering much better rates than acalabrutinib, the formulary won't change. I saw this in some large health care systems; county & federal government, large university non-profit, as well as for-profit.
The general tendency is that IgVH mutation is an indicator of a longer W&W when compared with IgVH unmutated. So by the time you have a need for treatment, the possibility of a 12 to 18 month limited term treatment may have become a standard choice available. Ibrutinib as a mono therapy is a forever option.
Seelel, thanks for the optimistic thought, which I hadn't actually factored in. When you say "a forever option" are you referring to the fact that it's (currently) prescribed as time-unlimited, or that it's going to be hanging around as a good treatment for a long time?
Ah - ambiguity. Your former explanation is correct - Ibrutinib is taken indefinitely until either resistance is developed or side effects are severe and warrant a change in medication.
Welcome Felix. It is relatively rare to have mutated IGHV and 17p Cll before treatment. Being mutated still confers a benefit to you, even with 17p Cll. Since ibrutinib works very well as a first treatment with unmutated Cll, you should do very well should you ever need to treat.
Sometimes simplest is best. I like the idea of just starting on ibrutinib or acalabrutinib. It could give you many years of progression free survival with the option to layer in other drugs later to try for med free remission or even cure.
Cajunjeff, I like your optimistic reasoning. In the back of my mind is the question whether these factors will change by the time of treatment. After all, mutation is the name of the game! I've read that IGHV mutation status doesn't change, but I don't know why this is considered an impossibility, with all the interaction between cancerous B-cells and tissue in lymph nodes and bone marrow. Thanks for the good thoughts!
Being IGHV mutated is a good thing. All our bad b cells game one mother bad cell. A working theory is that if the receptor on that B cell had undergone changes it was supposed to do (mutations), that the mother cell and all her children cells would be better able to treated.
IGHV mutation very rarely changes. Our Cll cells can develop chromosomal abnormalities over time. 17 p is an example of that. If you are 17 p deleted you have genes missing on the p arm of the 17th chromosome. Tp 53 is one of those missing genes and it’s a cancer fighting gene, not the best one to lose. Chromosomal abnormalities found in Cll cells can change over time. The % of your 17 p cells could get bigger or you might pick up an additional abnormality over time.
So your ighv mutation status will not change. Your FISH test and your labwork might well change. Deciding when to treat is a doctors call and based on a variety of factors. 17p Cll causes, on average, a shorter time to treatment than other types Cll. If you ever want to post your actual lab results, there are many knowledgeable people on here who could give a lay estimate how close to treatment you might be.
Below I link to some articles explaining the FISH test and mutation status. It’s best to read from the first article in the index and then the others in sequence. Good luck.
healthunlocked.com/cllsuppo...
Thanks for your explanation about IGHV mutation consistency over time, Jeff. And many additional thanks for the reading list! I'll study those, and then post my lab results, since at that point I'll have time and upgraded knowledge with which to read the replies - - which I can tell already will be warm and numerous. This is a great community!!
Hi Felix, sorry to have to welcome you, but glad you found us. The Pinned Posts on the right of this site will get you learning the terminology, etc. My own opinion re:docs is, some of the Older CLL specialists who aren't involved with clinical trials may be more protocol bound, but then again some Young ones might also. It really depends on the doc. If you check out trials at ClinicalTrials.gov website, you will have an idea of who in your region is involved. Also, people post here "can anyone recommend a specialist near X" and you will get responses.There's at least one person here with a 17p del who had a long Watch & Wait, so don't let your readings regarding 17p del stress you out. I've been around a decade already with "horrible markers". Bloodwork is one aspect of deciding when to treat (including platelet, neutrophil, & red cell parameters as well as other bloodwork ), but extent of organ involvement (spleen, kidney, liver, bone marrow) as well as your subjective symptoms like fatigue all play a part.
SofiaDeo, many thanks for all the good ideas! I have a lot of fascinating research to do at this (and other sites), as well as great booklets, and oodles of YouTube videos, so as soon as I start to worry too much, I direct myself mentally to the fantastic science that's being done! I've already learned that any information published earlier than 2019 is likely to be obsolete already. Live & Learn is more fun than Watch & Wait!
I know each case is different but I was diagnosed with CLL in2004 when I was 60. I have never had any treatments for it. I just go for my oncology visits and my quarterly lab work, my WBC averages between 55-70. I was first diagnosed in NY but now live in Colorado and both my Drs in NY and Colorado said I do not need any treatments for it right now. Each case is different and you might want to get a second opinion before you start treatment
This is a non USA reply of welcome from down in the South Pacific. As everyone here will tell you we all have individual CLL stories - but I can say I am one of many 17p deleted members with a count of over 30% deletion - in W & W over 30 years and on Ibrutinib since late 2016. I have had good results from that drug but never reached a "normal" blood result, so expect to continue Ibrutinb for the foreseeable future. As someone recently posted I seem to be in the group with "persistent lymphocytosis ".ashpublications.org/blood/a....
Best wishes.
Did u say 30 years on watch and wait? 17p deleted? My doctor told me she has a patient 17p deleted and was on watch and wait for 18 years.
Hi Sushibruno, just spotted your question. Yes early 1990's when enlarged lymph nodes picked up on mammography scan, but no other symptoms and no CBC for some time . No symptoms so no-one medical was interested enough to follow up with confirmed CLL label till much later. Didn't even have FISH tests in the local labs here till later in the decade anyway.
Thank you for responding I hope to be on watch and wait for years im afraid of the treatments.
Oh, don't be afraid of the treatments! If you ever need it, you likely will feel awful before treatment & much much better afterwards. That's been my experience anyway, for the most part, even with one out of my 6 treatments giving me "unlivable" side effects...at least I was only dealing with SE, not CLL symptoms on top of the SE's. We CLL'ers no longer do routine straight standard chemotherapy on everyone with all the severe nausea/vomiting.... even though our currents meds list SE's like those, they are way way less than standard chemo. My "nausea", when it happens, is very mild....like today, I had to get labs, leave clinic to drink my 4 cup volume breakfast shake & take my Venclexta, then go back inside to get hydration. I was a tiny bit nauseous while they were putting in the line, most likely because I drank that shake over 15-20 mins instead of my usual leisurely hour or so. Lying down in the infusion center recliner made the nausea go away, no meds needed. I'm not saying that SE's are always mild, but remember there is more than 1 treatment option so please don't worry.
🙂thank you SofiaDeo 🙂.
Welcome! Your thoughts on doctors are not silly. I have a local General hematologist/oncologist for my routine blood work but see a CLL research specialist at M D Anderson in Houston TX annually just to make sure things are going as they should. So far, so good. My one piece of advice is before you allow any doctor to prescribe treatment if and when the time comes, go to a CLL specialist for a second opinion. There are so many new therapies out there and even more in clinical trials. Wishing you the best and remember to keep living your life.
You might want to look in the NIH Natural History clinical trial for non-treated cll patients. I’m not sure what their protocol is for accepting new patients during this pandemic, but it’s a great way to have oversight of your particular case. clinicalstudies.info.nih.go...
Great positive attitude and actions to find out everything you can. I’m 71 years, good health, and live in southeast Louisiana.MD Anderson is a bit more of a distance than I can drive to. I have a hematologist/oncologist and have found a couple of CLL specialists in my area. I’m with you, young doctors onboard with the latest research and older doctors with experience with our age’s distinctions.
Keep us informed of your journey.😊
Sandra
First off, get a second opinion (you probably did). I was on wait and watch for 10 years (57yr old when diagnosed). Finally came time for treatmeant and was givin Ibrutinib 400mg. Took away my swollen lymph nodes, WBC numbers went down et et. That was over a 2 yr span time. Came off the drug for two years and am now starting to have symptons again. In hind sight I would of had them cut my IBR dossage to 220 after the first 6 months and gone down to 120 after 2yrs. My doctor is Steven Coutre from Stanford, he is a world renouwn blood disease doctor but even he could not tell me to come off the drug when I did. I took myself off because I was tired of the side effects of IBR and was willing to risk a self-experiment. While off the drug my numbers improved. Bottom line is you have to be your own best advocate and use your intutition when it come to your treatmeant. Not advocating self experiments, I think i could of talked to me doctor about what I was thinking an he would have agreed.
Good Luck,
Barger1951
Welcome Felix,
I found out when I was 73 that I had CLL. and just went off Wait and Watch 6 months ago at age77. I am currently in a clinical trial using Ibrutinib plus Obinutuzumab in untreated people over 70 years. The results so far have been great. I have a younger CLL specialist that is very up to date with current treatments. I suggest you ask around but find someone to feel comfortable with. I have an older Dermatologist who told me the young ones are more up to date.
Good luck!!
Hello Felixgratus
Sounds like you are off to a great start. I would suggest you eat healthy balanced diet and keep up the walking for IF/OR when you may start treatment. 30% of CLLers never need treatment.
You will need GP and CLL Specialist who can work together. I go to CLL Specialist who is a MD Anderson certified medical professor. I am also seen by young energetic student doctor before seeing professor, best of both worlds. Blessings.
Imbruvica did bring my CBC back to normal after a few month's. Your walking will be the secret for perfect absorption of the Imbruvica. The weight has to reduced to optimal lean. If necessary radical change to optimal nutrition (the CLL Society has nutrition specialists to advice you ).
I personally kept the 15 lbs I gained from a broken leg the year before diagnosis. I was at the extreme upper end of weight/bodyfat % for my height & bone structure, but still healthy. I needed that cushion this past summer when my Tx was failing & spleen enlarged so much I literally could not eat enough calories. I would not recommend anyone with CLL deliberately try to get lean. You will likely lose weight at some point, unless your doc says BMI/bodyfat% is too high & you need fat loss, please consider keeping it. I am now being asked to gain some back. If I hadn't had that cushion I might have gotten really ill!
Howdy Felix, Welcome and God Bless
Warm greetings, Felix. Be sure to get copies of all your tests and reports. Every report is worth the read. If you see something in error, address it. I've had to do that. After nearly 15 years and not-so-good genetics, I'm doing great in watch & wait. Best wishes,
marcyh
Welcome , there are much better treatments than a single agent . Find out about the combination like O plus V and zanubrutnib plus obinittuzimab plus venetoclax.
Ask about trials and these combos are more effective then single agents
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