I am CLL patient previusly treate with FR. I ... - CLL Support

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I am CLL patient previusly treate with FR. I need to be treated again. I need some advice please.

tropicsurvivor
tropicsurvivor

I am a CLL patient.

I have been previously treated with FR regimen for CLL. (Rituximaba plus Fludarabina)

After 2.5 years, the WBC are around 30 K/ul, and platelets around 41 K.

Doctors have decided to treat me again.

Due to cost, unsufficient Insurance coverage, it is not possible to go to Imbruvica.

I have two options:

1- Reapet FR scheme. (Rituximab plus Fludarabina)

2- Obinutuzumab plus chlorambucil.

My Doctor recommends 2nd Option.

According to my Doctor, Obinutuzmab (gazyvo) can be used also for patient previously treated.

Can anyone give some clue/advice about this.

16 Replies
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AussieNeil
AussieNeilAdministrator

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.

Neil

Dear AusseiNeil:

thanks for your prompt answer.

I understand from your message, that it is better to go to Gazyvo (obinutuzumab) regimen.

One question: when reading the Gazyvo prospects, it is indicated the use for first line patient only, not previusly treated.

Is it possible to use in my case ?.

My Hematologist in Mexico, recommended me to use it.

Thanks very much for your input.

Gerardo

AussieNeil
AussieNeilAdministrator in reply to tropicsurvivor

Hi Geraldo,

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.

Dear AusseiNeil, I do not have IPT, my Mexican Doctors are already a 2nd opinion.

They strongly recommended me to go to Gazyvo.

I have no gene mutation, no cromosome deletion, I have copy of my recent studies,

with recommendation for treatment.

I thank you very much for your input and advice.

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.

Dear MsLockYour posts:

I am resident of the Dominican Republic, but I have another doctor, in Mexico, which after run all test, studies, that is the recommendation.

My spleen is normal, I do not have ITP, I have no mutation, I have no cromosome deletion.

My phsycial condition is pretty good, by sight ,nobody may notice I have this disease.

The only reason to put in treatment is the low platelets count, incresase WBC and the some increased ganglies in the abodominal region.

Doctors in DR do have little experience in treating this disease, this is reason why I have traveled to Mexico, where therer are good centers.

At Mexico, my hematogolist, recommended me to go to same FR, six cycles, and after 18 months of maintenance with Rituximab only, every 2nd month.

The other option is Obinutuzumab. (six to eight cycles).

Thanks for your advice,

Gerardo

MsLockYourPosts
MsLockYourPostsVolunteer in reply to tropicsurvivor

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.

Dear MsLockYour Posts:

thanks for your answer.

In Mexico, they do recommended me to use Gazyvo, as a treatement for a patient going for 2nd treatment, which is in line with your statement.

In D.R. they are only reading the prospect of the medicine, this is my opinion. Doctors lacks in experience, since here is a rare disease.

I am not a doctor, but I understand Gazyvo is 2nd Generation Rituximab, which can be widely use as replacement of Origianl Rituximab (Mabhtera).

I thank you very much for your input/advice.

Best regards,

Gerardo

MsLockYourPosts
MsLockYourPostsVolunteer in reply to tropicsurvivor

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.

Dear MsLockYourPosts:

thanks once again for your valuable help.

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)

I thank you very much, and best regards to you,

Gerardo

AussieNeil
AussieNeilAdministrator in reply to tropicsurvivor

Hi Gerardo, This site provides members with a secure messaging facility, so you don't need to disclose your email address and hence can maintain your privacy/security. Just select the avatar image of a member you want to directly message and select "Message" : support.healthunlocked.com/...

support.healthunlocked.com/...

I've edited out your email address accordingly.

As MsLockYourPosts mentioned earlier, when disclosing information that you wish to keep private, you should select the option when posting "Only commumity members" in answer to the question "Who can see my post" as explained above by MsLockYourPosts. Try it now.

Neil

AussieNeil
AussieNeilAdministrator in reply to MsLockYourPosts

Geraldo and MsLockYourPosts,

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.

Neil

Dear AusssiNeil:

thanks very much for your advice.

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.

Best regards to you, and many thanks,

Gerardo

Hi

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

Mick

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.

Thanks very much for your valuable input.

I will request from my local doctor to proceed with Gazyva.

All the best,

Gerardo

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