Treatment time, hard choice!: Like others have... - CLL Support

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Treatment time, hard choice!

NaturalWaze
NaturalWaze

Like others have written, it is time for my treatment, and the decision on which to choose is incredibly challenging!

I’ve been on W&W for 3 1/2 years. Trisomy 12, mutated. More symptoms lately: slight shortness of breath, nausea (likely due to larger lymph node in abdominal cavity), enlarged lymph nodes on neck (had PET scan, needle then tissue biopsies... luckily all CLL, but some larger cells that she will continue to watch). Lowering hemoglobins (although last visit, numbers went back up). WBC around 70k. Dr Lamanna is my CLL specialist and I love and trust her. She is seeing me every 30 days now.

The treatments I am deciding between are: Venetoclax/Obinutuzumab combo - 12 month.

Bendamustine/Rituximab and Venetoclax/Rituximab 16 month trial.

Both treatment options begin with a hospital stay. A little afraid of Covid but hospital numbers are down. And she will closely monitor me for TLS.

Another option was BTK inhibitors (Ibrutinib) but I am leaning away from this, and leaning toward more aggressive, time constrained treatment.

I am nearly 61 and still working, and would like to consider an option where I will be able to function well while on treatment. I will request Intermittent FMLA (family medical leave) from work for any time off here and there I may potentially need.

So that’s the details; hopefully I got it all in!

I am scared, as I have read here from many others, but want to be as well-informed as possible and make the smartest choice for myself. I would love feedback from your experiences.

In health -

NW

57 Replies
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ps - another option presented to me was the Acalabrutinib/Venetoclax/Obinu random trial. I don’t think I want random, but it’s this: Arm A = acalabrutinib and Venetoclax. Arm B = obinutuzuman/Venetoclax/acalabrutinib, and Arm C is FCR or BR.

AussieNeil
AussieNeilAdministrator in reply to NaturalWaze

I'm on that trial and doing well. It seems the addition of Obinutuzumab may help in some cases, but in others, the increased risk of infection and side effects may outweigh the benefits. Hopefully the trial will inform us which of us will benefit from adding Obinutuzumab. I believe it helped me by clearing out my bone marrow faster so I could breeze through the Venetoclax ramp-up, which was a significant concern for me due to my chronic, severe neutropenia. I was actually able to reduce my dependance on frequent G-CSF injections and it's now months since I needed one, when I was previously needing them daily.

In this trial, if you draw the FCR/BR arm, it's the physician's choice which chemoimmunotherapy you are prescribed. That brings me to why Dr Lamanna recommended BR over FCR for you. As cajunjeff noted, you get a 55% chance at effectively a cure with your markers with FCR. Unfortunately, we don't see relapses cease on BR after 7 years as we do on FCR. So I'll be very interested in Dr Lamanna's answer.

Irrespective, you are spoilt for choice with an excellent specialist.

Neil

Thanks so much, Neil. Interesting that you are on the trial and you got the “triple” arm. I’m glad that you are doing well!

Ok, I will be finding out about FCR...

Best to you ~ NW

Hi I’m on arm on this trial I have had no side effects I didn’t need hospital stay for Tumor Lysis I finish the trial next month been a test I feel great all blood work in normal range still waiting for BMB results stay strong hope you get the arm you won’t

Hi Yidarmy -are you also on the triple drugs? Wow, amazing that you have no side effects!! My doctor starts patients in the hospital to watch for Tumor Lysis, no choice in this. I'm so glad to hear your positive blood work results AND how positive it was for you! Thanks!

Hi I’m on Acalabrutinib and venetaclax I was considered low risk for Tumor Lysis so I stayed near hospital for blood tests the first day on venetaclax just to check all was good cheers 🍻

showdog
showdog in reply to Yidarmy69

How long have you been on the trial?

Yidarmy69
Yidarmy69 in reply to showdog

Hi been on it a year in 2 weeks time that is the length of the trial after it’s finished 3 monthly check up then 6 months then yearly hope this helps

showdog
showdog in reply to Yidarmy69

The trials I was offered are 2 years. I dont see how that would be the same for everyone

Rooting for you NW, wishing u the very best outcome. Now its time to say good bye to cll. GO KICK IT'S BUT. 👍👍

Love that, Sushi!!! Yes yes yes!

💯👍👍👍👍we can do this. Eradicate cll for good🙂. Or for a long long time. Remember Dr. Lamanna told me she can treat cll in her dreams.

Good reminder!!

I wish she could treat it in MY dreams, too!!! Then I wouldn’t have to go through this! :-)

So true. We all wish it would just disappear.

If you want time limited therapy and have mutated IGHV cll, I wonder why FCR is not in consideration.

BR is a chemo treatment too, albeit a somewhat less harsh regiment than FCR. But lots of people with mutated IGHV are potentially cured with FCR and I don't think that's the case with BR. So for me if I were to go the chemo route, why BR over FCR? If I was doing chemo, I would want the cure option. Indeed, thats about the only reason I would consider chemo over novel drugs.

If I was doing a clinical trial and had mutated IGHV cll and wanted time limited therapy, I would pick the FCGi trial if they are still recruiting, a short course chemo trial that's adds ibrutinib where the early results are great.

All that said, if Lamanna was my doctor I would ask her this:

If you were me at my age with my type cll, what treatment plan would you pick for you?

Then I probably go with her suggestion. I like that doctors give us options and explain the options to us. But if we have a good cll doctor, as you do, that doctor will always be in a better position of knowledge to know what plan is best.

Sushibruno
Sushibruno in reply to cajunjeff

That's exactly what I'm planning on asking Dr. Lamanna when it's time for treatment. What would you choose Dr. Lamanna if u were me? (I always had this in mind)

She seems very hesitant to give an answer on this. When I did ask, she seemed to like the BR/VR trial.

That’s wonderful advice, Jeff; thank you. Regarding FCR, I wonder if she did mention it to me?? I was so overwhelmed, maybe I missed something? I do see that Arm C of the random trial is either FCR or BR.

She said they are seeing complete remission/no leukemia in the BR/VR combo. Deeper MRD.

Now that I see that, I’m wondering if I should consider the random trial as well (arghhh!). Arm A = acalabrutinib and Venetoclax. Arm B = obinutuzuman/Venetoclax/acalabrutinib, and arm C is the FCR or BR.

I am going to call Dr L... thx again!

AdrianUK
AdrianUK in reply to NaturalWaze

If you are unsure what medicine to go for and willing to take chemo (not everyone is) then the study you mentioned is a good way of not having to make the decision yourself. And of course being in a study is gift from you to the whole community. For me personally I found it a relief to not have to make my own choice when I volunteered for the FLAIR trial here in the UK.

NaturalWaze
NaturalWaze in reply to AdrianUK

Thanks, Adrian. This may be a stupid question, but why is chemo looked at as worse then the other drugs? Aren’t they all “toxic” with side effects? When I asked Dr L, she said she considers all (or many?) of them chemo). She doesn’t distinguish as I’ve read here (bear in mind I am paraphrasing and admittedly my brain gets on overload at end of visits).

AdrianUK
AdrianUK in reply to NaturalWaze

Chemotherapy is one of those words that are not well defined. It’s normally used to refer to drugs like fludarabine and cyclophosphamide or bendamistine. These are older drugs which are not selective and kill cells which are multiplying. As most of our normal cells don’t multiply very often the cancer cells are more easily damaged. . As such they tend to have more side effects than the newer drugs which are more selective. But the newer drugs do still work by killing cells they are just more focussed on killing lymphocytes. As such sometimes these newer drugs are labelled as chemotherapy by pharmacists or doctors and are correctly called “cytotoxic”. They tend to be better tolerated wirh fewer side effects than the older chemotherapy for most patients. Some people find they have no side effects at all on them. But you are right there are side effects to all these Medicines and so it is always important to report any symptoms you experience when taking them.

Rituximab is actually the first of the newer selective drugs as it is an antibody to lymphocytes so it is immunotherapy when given wirh chemo it is often called chemoimmunotherapy.

Comparing the efficacy and risks of the different treatments is not easy as there are not many comparative studies. So this is why especially at the moment it is important if possible to get an up to date review of ones own specific situation from a CLL specialist to help one choose the best treatment for yourself. This consideriafion would look at the specific markers you have, and any other medical conditions which might make one or other of the treatments more suitable. And of course it also depends on ones personal philosophy too. Do you want to try and see if you can get as close as possible to eradicating the CLL or would you prefer to take a medicine for perhaps many years fo control it instead.

And if at the end of the day there is no clear answer as to what is the best for you then that is when a clinical trial can be so helpful. At least you know you stand an equal chance of getting whatever would turn out to be the best medicine for you.

One thing that is worth remembering in all these discussions which can be stressful is that we know that all the Medicines do work and so for most of us whatever we take first will work. And if for some reason it doesn’t or it only works for a relatively short time we will be able to switch to one of the other medicines at that point. And even more new treatments are still being developed too. So in a way not knowing what medicine to choose is a good problem to have. Just a few years ago there would not have been much choice at all.

NaturalWaze
NaturalWaze in reply to AdrianUK

Thank you, Adrian, for this wonderful response full of info for me and also the part about them all working! I would like to try and get as close as possible to eradicating the CLL. I would also like to know that when and if I need to have treatment again, I chose carefully this time to leave me good options next time.

I am so grateful for your and the other responses! All this info helps me make an informed, educated decision, and worry less about it.

You have a great specialist, so that is helpful.

It might be a good time to update your profile with the core details, such as age at and year of diagnosis..

I am pretty sure that most comments about choice of treatments here benefit from some indication of your most recent blood tests.. eg. your specific haemoglobin level, etc, rather than vague statements..

..you’ll more likely get helpful opinion as a result :)

NaturalWaze
NaturalWaze in reply to Shedman

Thanks, Shedman. I did include all of that in my post, except hemoglobins, which I believe are now 11.1 (they had gone down to 10.6). I will update my profile, too.

I was on watch and wait for eight years and just started treatment two weeks ago. My original oncologist was recommending ibrutinib but when I went to a CLL specialist he disagreed because I have a history of Afib. I’m now on obinutuzumab and venetoclax. I had a little rough beginning but my body is settling down now. My latest labs(two days ago) were the best I’ve had in a long time. Good luck with whatever treatment plan you choose.

Keith

That’s great news, Keith. Thanks for letting me know!

I've been on Ibrutinib for 4 months and most of my labs are normal and I have SO much energy again! I am truly back to my old self again and feel better than I have in years. My CLL doc and I are ecstatic. My only side effect is bruising. I worked yesterday, painted the bathroom, and mowed the grass! Labs were weekly, then every other week, now monthly for the first time and soon quarterly again!! I am so amazed, and so grateful.

NaturalWaze
NaturalWaze in reply to Zia2

Thanks, Zia. Ibrutinib does seem the most convenient way to go!

janvog
janvog in reply to NaturalWaze

After 2 years on IMBRUVICA , I agree with you!

mrsjsmith
mrsjsmith in reply to janvog

And 2 1/2 years for me. No problems and minimal side effects.

Colette

janvog
janvog in reply to mrsjsmith

Those who developed Imbruvica deserve the Nobel Prize!

bkoffman
bkoffmanCLL CURE Hero

I would personally skip any chemo option if I had the choice despite your good markers. Lots of great non-chemo choices. Prefer Ven-G over Ven- R. Don't dismiss ibrutinib. With those markers, you should do super with any of those choices. But I would skip the BR- it won't cure you and when you need a second line treatment, they won't work as well. Stay strong. Brian CLLSociety.org

Sushibruno
Sushibruno in reply to bkoffman

Hi Brian, what is Ven-G

Hi Sushi - I believe Brian is referring to the option that is obinutuzimab ("Gazyva") and Venetoclax.

Thank you im very bad with abbreviation. I think he gave u some good advice. Ask Dr. Lamanna what she thinks.

AdrianUK
AdrianUK in reply to NaturalWaze

That’s right. Gazyva is just the trade name for obinituzimab which is using given wirh venetoclax when that is used first line. Rituximab is the R which is usually given wirh venetoclax when that is second line.

This is for historical reasons because the first line study is the most recent study and obinituzimab is essentially a newer and more specific version of rituximab (researchers usually look at new drugs for CLL initially for when other medicines have been tried and no longer work then gradually work back up the order).

Hope that helps.

bkoffman
bkoffmanCLL CURE Hero in reply to NaturalWaze

Correct

NaturalWaze
NaturalWaze in reply to bkoffman

Hi Brian, thank you so much; this is so helpful and I feel a weight lifting off my shoulders.

Regarding "curing me", as I understand, none of them will cure me, right? (but I do understand about 2nd line treatment and I know that is an important piece in my decision now).

Just curious, why are non-chemo choices seen as better?

Regarding ibrutinib, that would be easiest, logistically. But I'm terribly afraid of afib possibility (heart disease in my family, although no afib). Also I thought it would be better to have "deeper remission", as Dr. L puts it, with the other options, and then be done with it (for now). Can you explain the thinking with a long-term choice like ibrutinib? If it stops working, would I then be able to switch to one of the other options?

Thanks again, and I'll be "at" the conference on Saturday...

NW

AdrianUK
AdrianUK in reply to NaturalWaze

Cure is a word that some doctors are beginign to cautiously use. This is because when they look at people who got very deep remissions with FCR in many cases getting to “undetectable” status (called MRDU) then a good number of those people didn’t relapse for seven years. Then once they’d made it to seven years it seems like almost none of them relapse later on. The earliest FCR patients are now at more than 20 years.And of course that means many of them made it to a normal life expectancy without the CLL coming back. Perhaps some of them have a tiny number of CLL cells hiding around somewhere but if they don’t need treatment again then perhaps we should call it a cure. But you’d need to remain in remission for many years befor anyone would dare wonder if you were so fortunate.

When it comes to the newer drugs a good proportion of ibrutinib patients have made it to eight years on treatment without progression but most of those would not have got to the undetectable status so are perhaps best described as well controlled rather than possibly cured.

With venetoclax combos we are seeing similar deep remissions like wirh FCR. The hope and expectations is that many of the people who do so well on venetoclax will also turn out to have similar really long remissions and so perhaps a “cure” of sorts. We haven’t had venetoclax around for as long to be certain. But the data so far is very encouraging.

bkoffman
bkoffmanCLL CURE Hero in reply to NaturalWaze

Head to head comparison showed better progression free survival with ibrutinib compared to BR ( and FCR) in nearly all cohorts, though for mutated patients there was no significant difference in outcomes but a trend towards better outcomes with Ibrutinib.

Smakwater
Smakwater in reply to bkoffman

I agree,

The term cure is still very much a perspective word.

JM

cajunjeff
cajunjeff in reply to bkoffman

Natural Waze, I agree with Dr Koffman. I would do Ven G over Ven R. G is for Gazyva (obinutuzumab) and R is for Rituxin. They are both similar monoclonal antibody drugs, but Gazyva is newer and probably better.

Ibrutinib might be the easiest and safest pick. Its a pill a day that might keep your cll in check for 10 yrs or longer. As new data emerges, you can always add drugs like venetoclax to ibrutinib to try to get a remission.

I would not pick BR. Yes its true, all cll drugs have side effects. But some are more toxic than others. Bendustamine is a true chemotherapy drug, and its a good drug for cll. But I think the consensus among Cll experts is that it is more toxic than non chemo alternatives. As Brian said, with your markers most choices will work well, so pick the least toxic.

If you have any heart issues, I would go Ven G over ibrutinib. Ibrutinib can trigger atrial fibrillation episodes, more often in those who have preexisting heat issues.

Sooooo helpful! Thank you, cajunjeff!! :-) I feel lighter than I have in weeks and weeks!

👍👍

Good Morning NaturalWaze

No need to be a waze. I would agree with cajunjeff . I chose BR when I had treatment at 71 years old. I am doing great in deep remission, no side effects and I am retired, but work every day. I also walk 3+ miles each day. I know this decision is scary for you. Keep in mind that most but not all people on this forum are having issues with their treatments and the ones who don't have issues with treatment don't comment much. Blessings going forward.

NaturalWaze
NaturalWaze in reply to Big_Dee

Hi Big Dee, you agree with doing Ven G over Ven R and also not doing BR?

Thanks and so glad to hear how well you are doing!! Awesome.

Blessings to you as well,

NW

Big_Dee
Big_Dee in reply to NaturalWaze

Hello NaturalWaze

When I did BR treatments it was because I had very aggressive CLL and very short W&W of 14 months. Ven G and Ven R were only available in trials. I would have had to to move to Boston for trial and at that did not have time to get enrolled. Even though I was un-mutated, 4 CLL Specialists did not see anything wrong with me doing BR rather than ibrutinib. Where as 9% of the chemo treatment will develop secondary cancer, 1/3 of the US will develop cancer in their lifetime. I do not regret doing BR and it has been great for me. I liked the idea of doing treatment and knowing whether or not it would work and not having to live with side effects for the rest od my life. My blood number were looking good within 10 days. 24% of patients taking ibrutinib will have either a-fib or bleeding. Since you have Ven G or Ven R available to you I would suggest taking one of the Vens as it is being prescribed as a time limited treatment. Trust your doctor and blessings.

NaturalWaze
NaturalWaze in reply to Big_Dee

Thank you, Big Dee... this was very helpful. Blessings, NW

I finish O&V this December.

Nine rounds of O done as outpatient infusion. I was lucky in that there were pretty much zero side efx for me regarding both of the$e two med$ which are thankfully, part of a trial.

My labs and CT scans continue to be excellent, energy level (I'm 71) is at an all time rockNroll high and I hope this will be a chapter I can walk away from as I move on to the next thing.

Besides drinking plenty of fluids to help avoid TLS, I strongly suggest you get a port to help when/if infusions and CT contrast dye, are called for.

I can be a bit hyper and impatient, and after more than 4 years on W&W, and reading, in the summer of 2019, that the FDA approved O&V (considered at the time, the latest & greatest, to put a serious dent in CLL) , I was ready to do some serious CLL butt kicking when it became obvious treatment was called for. It was a very lucky break that the O&V trial was available. And now, close to a year of being on these meds, there are even more excellent choices. Good luck in your decision.

No, NaturalWaze had it right. Gazyva is a brand name for Obinutuzumab.

I can speak of my experience. I was diagnosed with CLL when I was 51. I’ve been treated with BR, FCR, Ibrutinib and Venetoclax with Gazyva., and did and continue to work full time. The BR and FCR didn’t work for me and I was very sick with a lot of pain. The Ibrutinib has many bad side affects and for me it caused a rare and severe lung side affect that put me in the hospital for 2.5 weeks. It ended up being a blessing in disguise as they accidentally found kidney cancer. So they removed the bad part of my kidney. After another year of W&W I started the Venetoclax ramp up. I definitely had numerous issues during the ramp up resulting in Severe pneumonia and sepsis. Again I spent two weeks in the hospital. I almost didn’t make it through venetoclax but my oncologist decreased the dosage to 25% and then started the Gazyva. Once the Gazyva started everything went extremely well. Staying on 25% Venetoclax with the Gazyva I was MRD negative in about 10 months. So I am back on W&W. I had no side affects with the Venetoclax or Gazyva, after the ramp up and hospital stay. I had bad side affects with the BR, FCR and Ibrutinib. The oncologist believes the issues I had during the Venetoclax ramp up were caused by the heavy dose and my bone marrow’s being beat up with the previous treatments. So my experience was that the Venetoclax worked and had FAR LESS side affects that the other three treatments. Of course your experience may vary. I wish you well in your treatments and making your decision. I hope this helps. God bless!

NaturalWaze
NaturalWaze in reply to IRN83

Thank you so much and it helps immensely! Also, I'm so happy to hear how well you are doing after all you've been through. That is great news, and your experience with the meds helps me.

A bit off-topic, I know, but in the UK the registered proprietary name for Obinutuzumab is Gazyvaro while in the US (and Australia?) it seems to be contracted to Gazyva. Anyone know why? Acalabrutinib's proprietary name is "Calquence" with no variations anywhere.

The BR/VR trial is actually being run just be Dr Lamanna. Here is some more information about it clinicaltrials.gov/ct2/show...

Sending prayers...

Thank you, Tov! Receiving them!

Ibrutinib ! I had Stage 3 CLL two years ago: Choice IMBRUVICA one pill a day, or six month complex Chemo. Now after two years on IMBRUVICA my CBC is almost normal, CMP perfect. The only reaction to IMBRUVICA was a face rash for one month. TAKE THE IBRUTINIB and avoid all the hospital and clinic trips. I exercise daily walking one hour on my indoor treadmill and climbing 16 floors up. I am 86. I keep a good diet.

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