Treatmant for cll

[nikolle]

Hello!My name is Lidia.My husband has cll from 2012 and now his wbc is 140000 and the platelets are 101000.The doctor said that is time for therapy.He will start FCR on tuesday.Is there anybody who knows something about it?Does it work?My husband has also del 11q.

[lawyermordy]

Hi Lidia, is your husband going to a CLL specialist and not just a general oncologist? There has been a movement away from FCR with the new oral medications like Ibrutinib and Venetoclax which in many cases are more effective than FCR. I would suggest discussing the oral meds and considering a second opinion if your not with a CLL specialist. Good luck.

[nikolle in reply to lawyermordy]

Thank you for answering.Our doctor is sure that the FCR is the only option in this case he has del 11q unmutated.we are not so sure...

[lawyermordy in reply to nikolle]

I would get a second opinion from a CLL specialist. Look for a national cancer center-usually at major university medical center. The advice I received from my doctor was that the first treatment is the most important.

[DaleFL in reply to nikolle]

I agree with lawyermordy and lankisterguy that your husband should receive a second opinion from a CLL specialist.

[lankisterguy]

Hi Lidia/nikolle,

I agree with lawyermordy,

I do not believe that a very experienced CLL expert would start treatment unless your husband had specific "B-symptoms"

see this post on another CLL group here on Health Unlocked healthunlocked.com/cllsuppo...

I also would question whether a CLL expert would prescribe FCR for someone with 11q deletion. Do you know if he is IGVH heavy chain mutated or unmutated?

Len

[nikolle in reply to lankisterguy]

Hello and thank you for answering me.His IGVH is unmutated.Our doctor was sure that FCR is the only option in this case.This tuesday my husband starts the FCR.We don t know for sure what to do.

[lankisterguy in reply to nikolle]

In the USA we have many options that are not Chemo. And unless your husband has severe symptoms, very low red blood hemoglobin, hematocrit and platelets, or very low Neutrophils you may want to postpone the FCR and see a CLL specialist first.

cllsociety.org/toolbox/cll-...

Len

[CattieAnne in reply to lankisterguy]

Hello nikolle,

Pls listen to Lankisterguy!

pls get a second opinion! Pls check out this link to American Society of hemotology article on 11q deletion which discusses 11q is not a prognosis for advance chemotherapy, FCR. Send prayers

bloodjournal.org/content/12...

[lankisterguy]

You may want to watch this Patient Power video: patientpower.info/video/wha...

Len

[Hoffy]

Try to wait and study the options. Unmutated 11Q with FCR vs. targeted therapy. Many non CLL specialists are very uninformed. Take it slow,

I had a doctor try to rush me into FCR and I told him no. My CLL specialist totally agreed.

Hoffy

[nikolle in reply to Hoffy]

Thank for answering!we will get a second opinion next week.you are on medication now?wish you all the best!

[Saftah]

I had therapy with oral medication and no side effects. Was on therapy for a year with remission. After another year and a half, almost ready to resume therapy. Lived a normal life!

[Hoffy in reply to Saftah]

Yes I am on a clinical trial combining imbruvica drug plus Venetoclax. I am doing well so far feel free to look at my Posts

Make sure to get a second opinion and do a lot of research before starting a cytotoxic chemotherapy regimens .

For unmutated patience I believe targeted therapy ( imbruvica) is the recommended first line treatment . Especially with 11 Q deleted .

The CLL society website has a lot of good information .

Be well,

Hoffy

[Ninagram in reply to Hoffy]

Did you have any issues with the venetolax? I am to start it next week and because of my very high wbc my dr. Says I am a moderate risk for tumor lysis. He is admitting me to hospital for first 2 doses. Thanks and glad you are doing well. Ninagram

[Hoffy in reply to Ninagram]

I did not but i had Imbruvica first for 3 months. Since you are starting with Venetoclax make sure they start at 20 mg and watch your numbers closely in the hospital. Watched closely everything should be fine.

be well,

Hoffy

[Ninagram in reply to Hoffy]

Thanks for replying. I have been on Ibrutinib for 3 months and now time to start venetoclax. Will keep you posted. Never know what to expect. Ty. Ninagram

[CattieAnne in reply to Hoffy]

Hi Hoffy,

Very curious about Venetoclax. I understand currently used for 17, is that correct?

Having any side effects with either drug?

[Hoffy in reply to CattieAnne]

For 17P deleted but used off label for non17P deleted people many times as well,

I am not sure on the side effects since I took it with Imbruvica,

Be well,

Hoffy

[Saftah]

Absolutely see a hematologist, then follow his advice!

[nikolle in reply to Saftah]

Hello and thank you for answer!because mu husband is unmutated del 11q our dr seemed to be sure that the fcr is the righr treatmant for him.we will get a second opinion next week.what oral medication do you have and your status is mutated or inmutated?wish you all the best!

[Hoffy]

By the way what state ado you live?

[Hoffy]

Also I hate to say it but whether it is conscious or unconscious many doctors like FCR because they get to Bill large amounts of money for it whereas if they write a prescription they do not make any money ....