Hello Dear Friends,
I read few stories with Gazyva here, but wanted to expand the topic and gather all opinions in one place. We are evaluating treatments for mom (69Y old, treatment naive, 13q deleton, WBC 190k, Hemoglobin 9.6) and I wish to avoid chemo at all cost. Ibrutinib also sounds too risky and not cost effective.
It would be inspiring and beneficial if you can share any experience with Gazyva particularly or any non-chemo treatment.
Best Regards
Remissions are certainly possible on Gazyva/Obinutuzumab alone or as approved by the FDA, with a very old CLL chemo treatment drug called Chlorambucil/Leukeran. It's thought that the Chlorambucil doesn't add much if anything. If you are after a short term treatment with a good side effect profile and a far higher complete response rate, then I would recommend you look at Obinutuzumab plus Venetoclax. See healthunlocked.com/cllsuppo...
Neil
Here is some hard data on my recommendation of Obinutuzumab plus Venetoclax as recently posted by avzuclav
ash.confex.com/ash/2019/web...
Here's the post: healthunlocked.com/cllsuppo...
As you can read, this is an extremely promising non-chemo combination.
Neil
Great post. I am delighted to be on O plus V. It’s going well personally.
I just started a clinical trial by the National Institute of Health and the sponsored by the National Cancer Institute. You will be Randomized for either Gazyva (“O” drug) plus Imbrutinib or the O plus imbrutinib plus venetoclax. This trial is for never been treated patients 69 or younger - the drugs are free. There are 760 hospitals across the country currently recruiting and 720 openings. After one day of treatment my white blood cells dropped from 134 to 70! And of course the lymphocytes dropped accordingly.
aquafinn, just a reminder we have a world population membership. It is helpful to state your country's name. Paula's usernames suggests she lives outside US.
BTW, I am interested in the trial you are in and will be looking it up. I didn't know there was a trial with O monotherapy as an arm. Thanks for that info.
I had about ten months remission with Gazyva alone. I received 6 cycles of Gazyva with excellent response and tolerance. I now have enlarged lymphs throughout my body and now I am on a low dose maintenance treatment of Imbrutinib.
Win
Short term remission with 6 months Gazyava.. back on Ibrutinib daily and great results after Gazayva short term ..
I was told by our late great resident expert, Cllcanada, Chris that one could expect about a year. The people that replied already seem to confirm that.
The obinutuzamab will knock it back but not for too long unfortunately.
Jeff
I just consulted on that with her doctor, and he believes Gazyva has a lot of side effects and not worth the short remission and that Ibrutinib will be the best solution.
Insurance is not covering it and we are living in UAE, so let the struggle begin...
We still have few more months to go tough, so trying to find a solution and not go completely out of my mind.
Has her doctor considered that the Gazyva side effects are only for the 6 months of monthly infusions, 4 days for the first cycle, then one day for the remaining 5 infusion cycles? The first infusion can be the toughest, but generally people do fine on the remainder. Have you asked about adding Venetoclax to Gazyva? I'm worried about the financial toxicity for you and your mother too. You don't want to commit to something that you financially can't sustain, sadly. My concern here is that if you cannot see your mother through the financially crippling indefinite maintenance requirement (only about 10% reach undetectable MRD after 5 years on Ibrutinib monotherapy). Then there is a real risk that her CLL could come back aggressively when you can no longer afford the Ibrutinib. You might be able to switch to FCR, but you have wanted to avoid that, plus it's an unknown after Ibrutinib and you presumably have to budget for that too.
Around 10 to 20% discontinue Ibrutinib, with side effects a significant reason, yet some have virtually none. Your mother won't know until she tries. Acalabrutinib is a second generation version of Ibrutinib, with less side effects. Can that be prescribed, preferably with Venetoclax or Gazyva, to have the best chance of getting your mother off treatment and letting her enjoy her life side effect free and not stressed about the financial burden she is putting you through?
Sorry if this comes across as blunt, but this decision situation is what many of us face if we wish to go with non-chemo approaches, particularly if we want to opt for the maintenance approach. That is why CLL researchers are looking into time limited non-chemo protocols that include Venetoclax or Gazyva with Ibrutinib or Acalabrutinib.
Neil
hi Neil , thanks for always telling it like it is , coupled with your knowledge of the treatments and the experiences of your own journey with cll.. so very helpful ...👍 --- hope you are enjoying spring time in Aussie land . blessings , james
Paula
Ok here’s the blunt truth.
FCR might cure her.
Venetoclax in combo with obinituzimab might cure her. (VO)
Obinituzimab alone may buy a little time but it will just come back.
Ibrutinib alone will not cure her. It should put the disease into reverse gear. But you would have to keep giving her a toxic drug for years and years potentially. Risking side effects. And of course paying loads of money every single year. Maybe for a decade or more.
In both the VO and FCR scenarios you are looking at time limited treatment. No more than two years for the first and no more than six months for the second.
In both cases a very high proportion of people will get a remission, and the assumption is that just like with FCR some of those who get that remission with VO will also have maybe twenty years or more with NO NEED FOR TREATMENTS during that time.
Honestly I think that if you don’t want to do FCR, then for a first treatment VO is definitely worth considering even if money isn’t something to be concerned about. Arguably VO is the best first line treatment. Certainly the data strongly suggests that if you are aiming for MRDU (when the disease can’t be detected in the body any more and for some People Will never come back) nothing has been shown to help a higher proportion of people get to that point than VO.
FCR though is probably the closest. So with the exception of those with 17p deletions or TP53 mutations it is certainly something still worth considering. Especially if you can’t get ahold of venetoclax and obinituzimab.
I live in a country with a free NHS which at the moment gives FCR first to most patients. But second line we can get either venetoclax in combination or Ibrutinib monotherapy for free. Our health service is very careful about what it funds for us and has done the maths and believes that Venetoclax in combo is at least as cost effective as Ibrutinib monotherapy. Honestly I think it is quite likely they will allow VO to be funded first line when the license is Granted for that in Europe as long as the price is right since avoiding the burden of a decade or more of Ibrutinib costs will save the NHS a lot of money in the long run.
I know that when it’s your family consisting cost seems almost cruel. But what would be crueler is setting out on a course of treatment that you can pay for one year or two years or even five years but then the money runs out. What then? After a few years of Ibrutinib the disease will have probably evolved to be resistant to chemo therapy. And it will grow back quickly. Hopefully venetoclax combo would work at that point. But if the money has run out then what?
So, money is a reasonable consideration. And ultimately whether its via taxes or health insurance premiums, we are all paying for these drugs in whichever countries we come from.
And if you have the money to consider paying for Ibrutinib privately then you definitely have the money to fly your family member to another country (maybe the UK?) to get a second opinion as to whether or not it’s even time to treat. The real experts often don’t want to treat this disease for five to ten years or more after onset. It all depends on the clinical picture.
Professor Hillmen is one of the top Experts in the world. He sees people in Leeds or London. Or we have other top experts too. Why not get your family member seen by one of them? You don’t even need a visa to visit here as a citizen of the UAE!
You might also even be able to be considered for an pharma trial tho that is quite problematic to do if you are not living in the right country tho one CLLer who was in Australia somehow got into a trial in London!
Hope that all helps.
But as I say. It doesn’t even sound like treatment is urgent from what you are saying at least. And if your doctor is not one of the top experts they may be more eager to treat sooner than the real experts are.
We all wish you all the best!
Hi Adrian , very good post ..👍 ---- thanks .. hope you are doing well . blessings , james
Has anyone been on the combination therapy of Venetoclax, Ibrutinib and Obinutuzumab?
Have begun Gazyva and soon to begin venetoclax
