has anyone been offered traditional chemo for treatment? My husband will be starting treatment soon. He’s been going to an oncologist in Tennessee. When we lived in NY Dr Rai was his doctor and we trusted him. We picked the oncologist here because he agreed to keep in touch with Dr Rai and discuss his treatment options with him. He hasn’t after we asked him numerous times he just blew us off. He suggested traditional chemo or a pill as the next line of action. My husband wasn’t happy with either one of those. For obvious reasons on the chemo. The pill (I forgot which one it was) he’s afraid he won’t remember to take it. I know, it sounds like the reasonable thing to do but he’s really awful about it. The last go round (4 years ago) he did the GAZYVA infusions and did really well with it. Is there a reason he can’t do that again?
Traditional chemo : has anyone been offered... - CLL Support
Traditional chemo
So it really depends on the specifics of his CLL, do you know his fish results or ighv status? Honestly a cll specialist is pretty crucial to getting the best treatment options, is there any way you could speak with one?
I had Bendemustine & Retuximab treatment in 2017, No recurrence of C.L,L, since.
If you lock your posts you may get more responses.
If you already are not so happy with this oncologist I would start shopping for a new one.
Is he a CLL specialist? You would be happier if you found one in Tennessee.
What about Dr. Ian Flinn ?
Hi Jill, Many CLL specialists explain that unmutated CLL patients should not have chemo, as it increases their chances of having their particular type of cancer turn into a worse kind. As Snakejaw mentioned, getting the IGHV status (which tells you whether it's mutated or unmutated) is very important.
Answering your question is especially difficult without knowing what your husband's genetic markers are (13q? 11q? 17p? TP53? Trisomy 12?) along with mutational status. As Snakejaw mentioned, that FISH (fluorescence in situ hybridization) test is also needed here. It examines the chromosomes and provides a roadmap for treatment. Without that info, it's like asking for directions to a location without telling us your starting point. We'd love to help, but we don't know where to start.
CLL is very heterogenous—that is, many seem to have different versions of it. Different versions of CLL respond differently to treatments. So knowing which exact version your husband has is the single most important question.
I would guess that Dr. Rai would have done all those tests already. However, if your husband is unmutated, those markers could have changed (because unmutated CLL mutates—which doesn't seem to make sense, but that's a longer story). For this reason, unmutated CLL patients need to be retested for genetic mutations before getting new treatments.
While it would be reasonable to run a new FISH analysis, to check for any new genetic mutations before deciding on next treatment, my understanding is that IGHV mutation status hardly ever changes.
But in any case, the oncologist should be strongly influenced by the patient's cytogenetics when selecting the most appropriate treatment.
And regardless of cytogenetics, in today's USA chemotherapy is an unusual choice of second line treatment, which calls for an explanation.
Yes, absolutely agree. Thanks for helping to clarify. By genetic mutations, I meant mutations to the chromosomes that result in genetic markers (which can change with unmutated CLL). But I guess the word mutation can be confused with IGHV mutation status (which doesn't change). Because nothing with CLL ever seems simple. 🙃
IgHV can't change but other genetic markers can. Previous treatment can remove most of the "easy to treat" CLL cells but leave a small population of the CLL cells with poor markers. IgHV un-mutated usually responds well but relapses sooner as the cells divide quicker than IgHV mutated . The marker that's particularly bad with IgHV un-mutated is TP53 del/mutated, it reduced the median time to progression on V+O by 30% compared to TP53 wildtype. While TP53 makes virtually no difference for IgHV mutated on V+O or V+I.
The number that go from IgHVunm + TP53wildtype (50% of initial population) to IgHVunm + TP53mut/del is hard to assess as they are lost in the small number of people that started out IgHVunm + TP53mut/del (10% of initial population) but with their short duration of remission requiring treatment more often they become a large proportion of subjects on 2nd line R/R trials.
So you're saying that if IgHV-unmutated patients aren't FISHed first time around, many treatment-induced TP53 mutations/ deletions are liable to go unnoticed? Do you have a feel for the numbers?
TP53 clonal evolution.
26 TP53evol out of 198 in this study. ATMdel is also looked at as it has short telomere lengths.
bmccancer.biomedcentral.com...
FC-R and other CIT were particularly good at selecting TP53 for clonal evolution. Report says new targeted therapies don't do this.
ashpublications.org/blood/a...
Thanks.
4 pills when you first get up in the morning is a lot better than chemo.
I know what you mean, but daily pills doesn't exclude chemo. I took fludarabine and cyclophosphamide in tablet form, and nearly four years later the thought makes me nauseous.
Can you make the pill routine more involved so it is never forgotten? For instance, count the pills everyday.
I have had to do this a few times when I mindlessly took my pills watching TV and couldn’t remember if I did. So… I set myself up in a chair and counted all the pills and calculated how many I had taken so far. Sort of ridiculous. BUT it is to treat cancer not a headache.
Your solution could be to subtract pill count on a notepad each day. If there is any doubt… count them. 5-10 minutes tops? No big deal.
Our memory may fail us but creating a system could help.
I had the same problem trying to remember if I had taken my medicine so I developed a two part system:
1) I have the specialty pharmacy text me at 6:00 every day;
2) I purchased a pill box with seven compartments for the seven days of the week.
No problems any longer 😀.
Best,
Mark
Yes, and I set my iPhone to play a song every 12 hours. That is very helpful! Also use a 7 day pill box with AM & PM pill separation. Very easy.
I also turn the pill bottles upside down when taking a once a day pill, after taking it. For my pills that are twice a day (or more) I put the extra doses on top of the upside down bottle. I can tell at a glance if I took a certain one, or not. This won't work with something like methotrexate that needs to stay enclosed. When traveling, I take a couple empty Rx bottles along, to put my daily allottment in when running around. I also have one of those small round pillboxes to use for things like skiing or hiking where I have limited pocket space. For short trips I might just put a days worth in 1 bottle and bring 2-3 bottles like this. If one isn't using public transportation or going long distances, where there's a possibility of medication being inspected, it mat not be necessary to have the actual labelled bottle.
I do have climate control, no open windows in the bedroom where I keep my pills. And I don't store meds in a bathroom or kitchen.
I started on Brukinsa (Zanubrutinib) in May of this year and have had no side effects and I'm seeing great results. I take two in the morning and two in the evening. I use one of those 7 day pill organizer and that ensures I take all my pills daily. Also I set a reminder on my phone.
Buy a 7 day pill minder and set it out on your table at dinner with your plates and cutlery.....easy peasy. I also have an alarm set on my phone for 6 pm just in case we aren't home at dinner time.....then I reset it for when I know we'll be home later in the evening.
There are also phone apps to help manage medications and reminders - I use one called MediSafe which is pretty good - you enter each medication, number of pills you have, and dosage. It sets up reminders and keeps track of how many pills are left, and reminds you when you need to re-order
Dr Bershadskiy mention Dr Rai at Northwell, right? I understand he designed the staging for CLL & is really up in age. Yes you need a doctor you trust & not listening to you is a very bad sign. I agree you need to search for a better local Oncologist while you allow the CLL Specialist to set the plan of care in motion. #GODSPEED 🙏🏾
@Jill70, I was diagnosed in 2018. Immediately had to begin treatment. I joined a trial and my first treatment was a 6 month regimen of B+R not the trial drug. It's now 5 years later and I am in remission. People questioned why do that treatment as it was "old school". I would do it again.
I too am in Tennessee. Have an awesome Dr after having to "fire" the first one. If you aren't comfortable with your options please seek a second opinion.
Pills are unavoidable, many people prefer to avoid spending days in a chemo chair getting an IV. FC-R has pills for FC, only the monoclonal antibody component R is an IV.
50% that are suitable for FC-R have a long lasting response >10 years. The other 50%? FC-R is 6 cycles and can be a shorter treatment if MRD testing is used to set endpoint. Leading researchers and most specialists in CLL are rejecting FC-R. Everyone that is suitable for FC-R also responds very well to modern targeted therapy - that "pill". FC-R stops all cell division, skin, hair, nails and gut lining are dividing all the time as they are growing or replaced.
Modern targeted therapy has far less or no impact on all fast dividing cells, it targets CLL cells. Monotherapy Ibrutinib, Acalabrutinib and Zanubrutinib are tablet/capsule only. Ibrutinib is three tablets taken at breakfast, the other 2 are taken twice a day, 12 hours apart. Is he prone to forget breakfast or tea/dinner/supper?
Do you know about the Expert Access program at CLLSociety.org? You can apply online and, if accepted, have a free phone consult with a CLL expert
Three thoughts:
1) You need a CLL specialist on your care team. A regular oncologist won't be up on treatments and will misdiagnose. That could be Dr. Rai on remote consultation. That could be a local specialist in Tennessee (or more likely Atlanta). cllsociety.org maintains lists of recommended specialists. I had access to a top hematologist five minutes from my house, and still got a CLL specialist on the team two hours away. That specialist has had a material impact on my treatment and outcome.
2) FCR was the standard of care some years back, and it's still on the list today, but most specialists shy away from it because other options available in the US today will get the same or better results with less risk and lower side-effects. I considered FCR strongly because of its chances of remission and fixed duration... but I was a) under 65 years old, b) had no comorbidities, and c) had the right genetics to consider it. Even then, I went with clinical trial. At a minimum you need those three factors to be true. And you need to be aware that FCR has a small but significant chance of causing progression to less treatable cancers. That is not on the table with the "-ibs and the -abs."
3) Don't sweat the pills issue. Yes, it's a lot to keep track of (and more so if you are in clinical trial, the whole process takes 30 minutes a morning for me plus a little at night). But there are good phone apps that make this pretty simple. I have not missed a dose in six months not because I am good at remembering things (ask my wife 
) but because the app is pretty foolproof. Apple has one in the Health app if you are on iOS; there are several Android options. Plus, if you miss a dose, it's not the end of the world. They give you precise instructions on what to do next. These drugs have half-lives and daily/half-daily dosing is to keep a steady level of drugs in your system. It's not like your system goes to zero drugs if you miss one dose.
Hey Jill:
In 2019, when I first met with my CLL specialist, Dr. Richard Furman (NY Presbyterian/Weill Cornell), we discussed how he treats this condition. He made it VERY clear to me that he would NEVER use traditional IV chemo to treat my CLL.
His rationale was twofold.
First - long term - there are well documented, deleterious sequalae to most IV chemo treatment regimens for CLL. He didn't want to 'solve' one problem only to create another one down the road.
Second, the newer CLL treatment options are as powerful, and in most cases, MORE powerful than the much older IV chemo options. Also, the newer, targeted therapies are much easier to take and their side effects profiles are superior.
I worked in the world of pharmaceuticals for 28 years. One of my rotations included promoting two cancer meds - Taxotere for lung cancer & Eloxitan for colon cancer. I often spoke with the IV nurses and the oncologists about side effects. While both treatments were very effective, the side effects patients experienced could be horrific.
Before I even met Dr. Furman, I made a promise to myself that I would never take IV chemo therapy unless I absolutely, positively had to.
Man-with-a-Plan
It seams your gut is telling you to get a second opinion. It’s very important you and your husband consult a CLL specialist. The good thing with CLL is that you have plenty of time to make a decision about the next treatment option. It’s not usual for doctors nowadays to recommend chemotherapy as the next line of treatment. 🙏
My husband has been treated with Gazyva 3 times First time with addition of chlorambucil and next time Gazyva alone and lastly with Gazyva and Ven.
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