I was offered trial with 2 options you dont get to pick
Ibrutinib, obinutuzumab, venetoclax
Or
Ibrutinib, obinutuzumab
I am hearing from the group that these are second line of treatment.
I have not been treated and my retired doc just recently said I was watch and wait. New doc gave study trial paper work. My platelets did dip downtown 87 but took again at my DO office up to 93. I just felt like he didn't give me any other options and he was very blunt and just said come on you've been waiting 3 years. I am disappointed they both work at same cancer center with completely different opinion. I feel prompted to go down to md anderson at this point. Its hard to leave one you run a one person business butI will.
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showdog
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ShowDog: Whether it's one or other physician at your local office who is correct in their speculation of the urgency for CLL treatment ~~ you have nothing to lose and everything to gain by visiting a CLL specialist at your nearby flagship medical center, M. D. Anderson. Simply being 3-years post diagnosis is not a signal that treatment is imminent.
Having to leave your solo-run business for a day could bring you a life-changing result.
BTW my best guess is that you'll be told to continue to remain in the Watch-n-Wait category for your numbers do not sound sufficient to start treatment.
I think you should make an appointment at M. D. Anderson.
It's never a good idea to fumble a health decision of such consequence as starting/not-starting a treatment. You'll be amazed at what you'll learn from the excellent CLL-specialists at MDA.
I have an appointment. I want more educated advise
I can't comment on whether to start treatment, I feel this really needs to be between you and your doc, but a second opinion would be well worth it.
If it comes down to choosing the clinical study. Both randomized options are potentially pretty good unless you have some specific predisposition to known issues like A-fib with Ibrutinib.
So glad you are reaching out for a 2nd opinion. You won't regret having the full information at your fingertips. If you haven't done so, keep a record of all your blood draws and as you have observed with platelets, there will be ups and downs. A Dr. who is thinking you need treatment because you have been 3 years with CLL and no treatment (without any other explanation) is not one I would feel comfortable with.
I am 20 years living without treatment----but, .You very well may find from the 2nd opinion Dr. that you need treatment now--but at least you will (you need to ask for copies of all test results) have the reasons documented and feel good about your Dr.
I am not on a trial. I am on imbruvica,venclexta, and gazyva. How i got there is another story. the best thing about a specialist is that they have access to all the latest info and trials and they see more cll patients.
I have 2 doctors-a local and a specialist 2 hours away. They don't always agree-lol
without having more info from you-markers,age ,current numbers and trends-hard to offer an opinion.
A doctor can only offer you certain trials. Manufacturers don't do tailor-made trials.
there usually are more trials available from specialists at their facilities.
Because i am paying co-pays i do not have to go farther than 15 minutes away.
I wish I would have gone to MDA before I began treatment. I was having some issues, but overall, I was feeling good when my local oncologist opted to start me on Ibrutinib. I had some significant side effects, so after 6 weeks, my doctor took me off the med...then was a bit unsure which direction to go next. At that point, my husband and I decided to go to MDA for a second opinion. (I dearly love my local oncologist who is a hematologist but not a CLL specialist.) The doctor I saw at MDA was very diplomatic, but I could tell that he felt beginning treatment had been a bit premature; however, it did allow him to start me on Venetoclax/Rituxin which worked much better for me.
That trial is a very popular trial at the moment. We know for sure that all three of those drugs work well for CLL and they each work in different ways. We suspect that combining at least two and maybe all three may turn out to be the new golden bullet and may become rhe gold standard treatment. But we don’t know for sure what is the best way to go. In the USA you would have a choice outside of a study to have either Ibrutnib monotherapy (or perhaps replacing that with Acalabrutinib) or venetcolax plus obinituzimab. Some USA doctors would still also offer FCR to some younger patients on the basis of the strong data supporting that it will even cure some patients.
Over here in the UK more of us are asked to take chemo first.
So for you theee are two separate questions.
1. Do you want to be in a trial which would allow you to contribute to future knowledge whilst getting good care and having access to a new combination that you may or may not be able to get normally.
2. Is it time to actually start treatment yet.
Clearly as others have said going to the second opinion will really help you understand your options better.
I think either arm of that trial would be good. It’s a matter of personal choice. Not knowing all your markers and situation, the safe starting spot for most people is just single agent ibrutinib. You can always add drugs to it later. I think ibrutinib is the most conservative starting point for almost anyone with Cll.
If you like the idea of a trial which may have a more aggressive approach to get into a possible remission where you can get off all drugs, the trial you are considering seems an excellent choice to me.
The ibrutinib obinutuzimab arm of the trial is the more conservative arm, the addition of obinutuzimab to ibrutinib might get you a remission. The venetoclax, ibrutinib and obinutuzimab arm is the more aggressive approach. One might argue that combination could cure some people.
So why would some do only ibrutinib? I think because no one knows what the future is in these trials and if it’s better to take the best three new Cll drugs at once or take them in sequence. Is there a risk in using all your best ammo at the start of a battle? That’s one thing they are trying to find out.
Getting an opinion at MD Anderson is almost never a bad idea. I don’t know that they have all the answers as to which route to go. Your first treatment choice is critical, so if you have the resources to get to MD Anderson and get a second opinion and are uncertain about this trial, that’s a no brainer to me. Go get another opinion.
That’s awesome Jeff. Adding Rituxan to Ibrutinib didn’t seem to make much difference. Adding obinutuzimab, on the other hand, appears to make a big difference.
Since Rituxan and obinutuzimab are similar drugs, you would think the results would be similar. I think obinutuzimab is just a better monoclonal antibody.
I think anyone considering FCR should discuss the potential benefit of substituting obinutuzimab (gazyva) for Rituxan.
Indeed if I had mutated Cll and was young and was considering chemo, I would go for short course FCG and and add Ibrutinib. The FCGi trial is killing it.
Hello showdog, I have been watching and waiting for two years but think the time has come for treatment. This will probably be in November. My consultant is hoping to use Acalabrutinib but this depends on the results of a CT scan and further blood tests. I actually feel better than I have for years but do have raised lymph nodes in my neck and I think my abdominal area.
Do you actually show dogs? We showed CKCS for over 35 years.
Do let us know how you get on. Sort of glad we aren't as involved with the show world now, our affix was Brantwood and we had just one American championship because we care to export, no dogs now but we do still judge . No shows this year but hey ho. Stay safe.
No two cases are the same but my husband's first line of treatment with gazyva (obin) and leukeran 4 mos got a 2 year time to next treatment. from many people I'm not hearing they're getting that long of a term even with the targeted drugs and in fact he is now only getting gazyva again with excellent side effect free results. I am not aware of what your hemoglobin count is or your absolute lymphocyte count an absolute neutrophil count so it is hard to make any determination but you cannot go wrong by going to MD Anderson I to feel that our hematology oncologist is often too eager to treat I wish you all the best
I am on that trial. It is my first time of treatment. My doctor decided it was time for treatment based on a pattern of falling g hemoglobin. At the time my wbc were over 300,000 but that was not the concern. I agree with others a second opinion from a CLL specialist would be good.
Frontline treatment is a patients first course of therapy whereas second line is for relapse, remission, or intolerance.
Clinical definitions for front and second line therapies are defined by medical regulatory commissions, however within regulatory guidelines, there are practices that accept using second line therapy in font line settings.
Although clinical trials are usually approved with regard to front and second line objectives, there are some trials that are designed to observe a broader patient base.
Both of the treatment options options that you stated are known to be effective in treating CLL in trial observation. Although the doctor you spoke with may be correct , it would be worth reading the trial objective and discussing it with a specialist who can elaborate beyond "come on you've been waiting 3 years".
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Venetoclax plus obinutuzumab - the first chemotherapy-free, fixed-duration first line CLL treatment approved by Health Canada
FCR vs imbruvica first line
Curious to know the preferred first-line treatment for CLL in other countries 
Best front-line treatment(non-chemo) for CLL with no 17p deleton/TP53?
Paranoid: Would It Be Misguided To \"Request\" 2nd-Line Treatment?
