Treatmant for cll

[nikolle]

Hello!My husband has cll from 2012.he is unmutated del 11q.His wbc is 140000 and the platelets 100000.Our dr said that is time for therapy.He said FCR.Anyone who knows something about it?thank you very much!

[Cammie]

Nicole

FCR is still the gold standard treatment for cll with remissions of 10 years or more in some cases.

There are numerous new,non chemo treatments also available but not necessarily in every country.

You should try and find out from your husbands medics what treatments are available in Greece and discuss fully why they believe FCR is the correct treatment in your case.

In many countries , not all, pre treatment tests to find out what cll mutations are present on your husbands blood cells are done to guide medics in selecting treatments.

Hopefully you will be supplied with information about FCR or other options so you can be sure the correct treatment is selected.

I had FCR in 2015 and am still in remission.

There are numerous pinned posts on this site you can read or look in to cll support Association website and visit Leaukemia Care and Macmillan websites to find up to date info on treatments etc.

Wishing you best of luck.

[nikolle in reply to Cammie]

Hello and thank you for answering!i am glad that you are doing well!we will get a second opinion next week.because my husband is unmutated i don t know if the fcr is the right therapy for him.because you had the fcr....it wad difficult?what status and del are you?wish you all the best!

[caven]

You mention <UN>mutated status. FCR is generally not recommended for those who are unmutated whenever non-chemo treatments are available. The remission with FCR for unmutated people is as short as one year and the prospect for new chromosomal aberrations to erupt post-chemo is enhanced. [The odds of a long remission is far greater for those who have mutated status.] The standard for those who're unmutated includes the novel therapies (non-chemo 'pills') if they can be accessed.

Caven

[nikolle in reply to caven]

Hello and thank you for answering.our dr seemed to be sure that the fcr is the only option for unmutated 11q.we will get a second opinion next week.do you think that non chemo pills are indicated in this case?wish you all the best!

[Smakwater in reply to nikolle]

It is my understanding from listening to my doctor that depending on your complete genetic profile, there could be multiple choices for front line therapy depending on what your treatment objective might be. for example; you may want to start on one drug that is not ideal for long term, however, it could be a temporary low toxicity maintenance therapy used until the best drug for you becomes available. I believe that it is very important for those diagnosed unmutated to have a doctor that is both up to date on emerging technologies, and involved in clinical research.

[Lily_Pad_Master in reply to nikolle]

My understanding is as Caven’s regarding FCR is sub-optimal for people with unmated cells. I would be afraid of a doctor who does not know this. I’m glad to hear that you are seeking a second opinion. Best of health to you and your husband.

[AdrianUK in reply to Lily_Pad_Master]

There are actually differences of opinion on this point. There’s almost universal agreement that FCR is probably not be the best for people who have 17p deletion / TP53 mutation. But when it comes to unmutated it’s less clear. So in the uk for example only 17p deleted patients are likely to be offered a modern alternative medicine like ibrutinib instead of FCR firstline. There is enough uncertainly over here for those who don’t have 17p Del as to the best course of actjon that they are running a big trial called FLAIR to try and find out. I’m sure that there are other countries (the USA being one) where an unmutated person wouldn’t be offered FCR). But I’m also sure there are many countries where FCR is the only thing on offer firstline (and perhaps the R part might not even be available everywhere). I would definitely try and get seen by a top CLL specialist in Greece to make sure you get offered the best treatment available in your country.

[nikolle in reply to AdrianUK]

Hello!we are going to see another dr next weeek.if in other countries they offer non chemo therapies i believe that is the best option.i greece there are pills non chemo.i don t know why my dr insists that the fcr is the only option.my husband is unmutated 11q.do you know something about it?

[nikolle in reply to Lily_Pad_Master]

Hello!yes we are going to see another dr but i am afraid that he would offer us the same option.i think that in this case unmutated 11q that should take non chemo pills.seems that in greece the fcr is the only option.even for 17p he said that chemo is the option.wish you all the best!

[Smakwater]

Below is a link to a most recent post featuring a commentary by a practicing clinical research doctor with interest in the aspect of unmutated IGVH. The statement with regard to unmutated status is made at about 8:00 minutes into the video. If You research this doctor on Patient Power, Onc Live, and various other CLL commentaries, you can find more sound perspectives with regard to treatment and unmutated status.

youtu.be/nLooOsb4xMQ(Not working as expected?)

[nikolle in reply to Smakwater]

Hello and thank you for answering.i watched this video and i understand that the unmutated status is not good for chemo.we will get a second opinion next week.wish you all the best!

[TimHB]

I cannot over stress the importance of getting as many opinions as possible. I've traveled the country to see 4 top specialists and it not only changed my initial diagnosis but I went from W&W to urgent treatment needed, from chemo to a clinical trial chemo alternative. My primary oncologist was instrumental in facilitating this and welcomes heading a team. Ask your doctor to do the same and if he doesn't, find a new doctor.

[nikolle in reply to TimHB]

Hello and thank you for answer.are you doing ok now?we ll take a second opinion next week.our dr said that the fcr is the only option for patients unmutated with del 11q.what do you know about this?wish you all the best!

[Cllcanada Top Poster CURE Hero]

In Greece I would recommend a second opinion from

Dr. K Stamatopoulos

Institute of Applied Biosciences, Center for Research and Technology Hellas, Thessaloniki, Greece

youtu.be/2qIya1S2kzI(Not working as expected?)

~chris

[nikolle in reply to Cllcanada]

Hello and thank you for answering.we will meet dr Stamatopoulos next week for a second opinion.after you sent this message i called him.wish you all the best!

[Cllcanada Top Poster CURE Hero in reply to nikolle]

Oh that's wonderful! He is an extremely knowledgeable CLL doctor...

let me know how it goes.😄

~chris

[nikolle in reply to Cllcanada]

Hello again!Good news!Most likely my husband will take ibrutinib and not the fcr therapy!we will wait for the results of noch and tp53 tests.

[AdrianUK in reply to nikolle]

I found an old article that suggests ibritinib IS available in Greece but only for when FCR has been tried first. If the top expert offers you FCR and there is no clinical trial available , then don’t feel that you’ve been short changed. FCR may still work, and give a few years or more before any other treatment is needed. And by then there may well even be newer better drugs. In the uk someone with these markers would be offered FCR or a FLAIR trial. I’m similar in my markers (13q Del but unmutated) and do like you one of the markers is considered bad, but he other good. So I guess we are inbetweeners

[nikolle in reply to AdrianUK]

Did you have some kind of therapy so far?what is the flair trial?i think that for unmutated the fcr is not such a success.

[TimHB]

I would ask about alternatives to chemo. I am unmated and was about to start chemo when I was approved for a clinical trial with Gazyva and Ibrutinib - a monoclonal antibody infusion therapy that's had great success with better responses and longer remission than FCR, if you meet the criteria.