You only had a short remission on FR and a repeat treatment is unlikely to achieve that long. What your doctor has recommended isn't chemo, so won't come with the risk of long term damage to your bone marrow. That's already struggling it appears, given your low platelet count. Gazyva is a second generation version of Rituximab, the R in FR and has been proven to be more effective.
Do a search for other's experiences in Gazyva/Obinutuzumab.
I'm not medically trained, so I've just shared what I see as the reasoning behind your haematologist's recommendation. As MsLockYourPosts mentioned, the auto-immune condition ITP could be behind your low platelet count, so it is worth while asking your haematologist if this possibility has been ruled out. You might benefit from a second opinion.
Yes, Gazyva (obinutuzumab) can be used for previously treated CLL patients.
Welcome, tropicsurvivor. I’m sorry that you are looking at treatment again. If you give some indication of where you are, people might be able to give information more specific to your location. Options vary greatly from one country to another.
Do you know your absolute lymphocyte count? Are your nodes and spleen enlarged? It is difficult to know exactly what you are dealing with without more information. One thing to ask about would be ITP which specifically affects the platelets and would be treated differently than if the CLL is ramping up.
Geraldo - regarding your question about Gazyva only being used first line, I received it second line in the US, as have several people I know. The rules for use might be different in Mexico and / or in the Dominican Republic.
You might get more answers from others if you lock your post which prevents it, and any replies, from showing up on social media. To do so click on the v next to more on the original post, then scroll down and change the setting from everyone to community only. Keep us posted.
You got my curiosity going, so I looked up the Gazyva web site. It does say first line for both CLL and Follicular Lymphoma. I called, and was told that the "inclusion criteria" for the trials included first line, so that is how it was FDA approved. I have seen posts from many people who have received it second line both with and without Chlorambucil.
For CLL, Rituxan would usually not be used except in combinations with other drugs, while Gazyva seems to be effective on its own. It is now being studied in combinations with some of the newer non chemo drugs with promising results so far.
Where are you being seen in Mexico? I don't know of any Hematologists there who specialize in CLL, but there could be. I know that there are some very good medical schools there, and undoubtedly hematologists who stay on top of CLL research.
You are perfectly right, I was also told tehe same by the Mexican hematologist at Merida, Yucatan.
He just recommend me to administrate the Gazyvo alone or Gazyvo chorambucil, in six to eight cicles.
Since I am living in the Dom.Rep. my insurance only covers locally, So, I will try to convince my local Doctor, to request this Gazyvo Scheme, and my insurance will cover, even if partly coverage, I will cover the rest, and I will have a longer remission.
Just in case you have any other supplementary information, will you be so kind to (contact me - email address removed by admin)
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Further to the first line/second line question, as I see it, generally the focus for new CLL drugs is to add to the options for subsequent treatments, because repeating an earlier treatment generally isn't as effective the second time. Gazyva was developed to be a better version of Rituximab and hopefully replace it. Hence it made sense to do a trial to show how it functions as a first line treatment.
I gather it is easier/ less risky to use a drug approved for first line treatment for second line use, versus the reverse? I'm not across how off label use of FDA approved drugs is determined, let alone in Mexico or the Dominican Republic. I would expect that specialists in those countries would look to documented experiences elsewhere, which are most likely to be from the USA. Importantly Geraldo, there is that second line experience with Gazyva. Equally importantly Gazyva is given for a limited time, reducing the treatment cost compared to Ibrutinib, which is prescribed indefinitely.
The first option was to repeat the FR scheme, for six cycles , and after one Rituximab infusion every two months, for 24 months, which may provide a longer remission, but it is a long treatment.
My mexican hematologists suggested Gazyvo with chlorambucil or without it for six to eight cycles, and I think this is the way to go, because Ibutrinib is perhaps the best, but insurance will not cover for lifetime.
If I can get a longer remission with Gazyvo, perhaps by the time I need a new treatment, will be better and cheaper drugs available.
I understand the patents for cancer drugs is for 4 years, Rituximab for example is already expired, so anyone can fabricate the drug, and the price is already lower in the market.
I've read your posts and replies. Each of us are different and respond differently and I am not medically trained so can only relate my experience. I had FCR in 2010 and only managed 5 cycles. Fortunately I went into remission for 3 years 8 months. When it came to discussing further treatment my consultant was totally against further FCR as he felt the benefits were out wayed the disadvantages. A number of treatments were tried before being put on Ibrutinib. As that is out of your reach and although I'm not familiar with your second option it would seem from the posts here that would be better than no treatment. I would advise seeing your consultant again but go in with a written list of your worries or questions so you can make an informed decision. Good luck
Is it possible to have Ibrutinib on compassionate basis from the drug company. I would ask the dr to request, from my understanding your body is resistant to your first treatment so to repeat would have minimal effect, this unfortunately is a trait of CLL, the cancer becomes resistant to the treatment, if no other option I would go with option 2. All the best.
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