CLL Support Association
9,311 members14,684 posts

Treatment

Hi Everyone

I need your opinions please. I was diagnosed with CLL in September 2016. I was told to take care of myself because this could be a long term watch and wait. My FC and FISH are all in the normal range but have just learned that I’m unmutated. I now have anemia. Low platelets, low RBC, high WBC and high absolute lymphocytes. I have gone from stage 0 to stage 3. The fatigue has become overwhelming. Dr. Choi of UCSD recommends I start Ibrutinib, Dr. Malek of University of Michigan wants me to consider Chemo with the possibility of a3 to 5 year remission then Inrutinib. Sorry this is so long but I’m hoping to get some opinions or thoughts from some of you as I know you have had to make these same decisions. By the way I just turned 72.

Pam

15 Replies
oldestnewest

Hi Pam. Speaking as a person who received a single cycle of chemo (FR) before being switched to Ibrutinib in Sept. 2017 because my cytopenias were so extreme and my infiltration so high, I can say I am MUCH happier to be on Ibrutinib. I have been on it for 5.5. months now with essentially no side effects I am aware of on a day to day basis. And I am not worried about permanent marrow damage or DNA damage (or even aggressive driving of clonal evolution), which were all concerns of mine with chemo. So for me this was definitely the right route. The Ibrutinib resolved my cytopenias and shrunk my spleen and lymph nodes very quickly. But everyone is different. Some people DO have difficulty with Ibrutinib. And others have been very happy with chemo and the long remission it has given them.

Good luck!

kim

10 likes
Reply

Thank you so much.

Reply

Hi Pam I have just gone through the same difficult decision making process following a similar progression to what you describe.

As I live in the UK Ibrutinib is only offered as a first line treatment on trial.

I was told I was suitable for either chemo or Ibrutinib so opted for the trial and the computer made the choice.

I am have started Ibrutinib and Rituximab one week ago and all is going well for me.

I am very happy about this and reassured that chemo is still an option if needed in the future.

It is a very difficult choice to make I was glad the computer made it for me despite being a person who likes to be in control of my own life.

I hope this helps. Let us know the outcome for you.

Good luck

An

7 likes
Reply

Thank you. I’m still dealing with “how the heck did I get here?”

1 like
Reply

What chemo, there are a number of choices.. actually it would be chemoimmunotherapy..very different from chemo per say.

It really depends on your body age.. and comorbidities...

Your options probably are Gazyva and chlorambucil [GC] or bendamustine/rituxan [BR].

If it were me I think I would start with ibrutinib, although I only lasted a few months on it. The next treatment Zydelig (idelalisib) and rituxan, was just great...

I only mention this because we are all different and one treatment can be great for some and terrible for others, and they are too new to understand why this is yet...

Difficult choices... I know...

~chris

10 likes
Reply

UCSD and Dr. Choi are well known In the CLL world. I don't know the east coast doctors as well, so don't know of Dr. Malek. Dr. Kaminski is the only name in Michigan that I recognize on the CLL recommended doctors lists cllsociety.org - with links to two other lists at the top of that list). Perhaps someone closer will know of Dr. Malek or other options in that area.

Which chemo would be involved in your treatment is a question worth asking. Many doctors in the US use Gazyva alone, without chlorambucil. Mine did, but my case is unusual and chemo was ruled out altogether, so I did not have to deal with a decision like yours.

A third opinion is always an option. I think in your case I would look at that, taking into consideration travel while getting treatment. These doctors aren't exactly next door, and while many travel to get the treatment they want / need, it is nice to have your treating doctor nearby if possible, also.

2 likes
Reply

Thank you.

Reply

Unmutated...then Ibrutinib over FCR. Gazyva great but do it without Chlorambucil. Just my opinion of course.

1 like
Reply

Thank you.

Reply

Hi Migirlusa

I had 6 rounds of FCR chemo starting in November 2016 till April 2017. Although the chemo kick disease into touch I only had a few months before I started having issues again. I am now about to start Ibrutinib once they get my platelets up.

I don’t think there are any guarantees with this rotten disease. Just giving you my experience, good luck with whatever choice you make.

Dell

3 likes
Reply

Thank you Dell. I’m just feeling a little overwhelmed right now. I thought I would be one of the long term w&w patients.

Reply

I know, I think we all feel that way, but look at it this way , its become a problem and needs sorting out. Can you imagine if they said right it’s here we can’t do anything about it.

Instead you are being offered a choice two fantastic proven treatments that will kick CLL into touch and you still have one in the locker if that’s needed. Plus they are advancing so many other treatments by the time you need anymore you might have 5 to choose from.

Try and stay positive at this time even though its hard.

Dell

2 likes
Reply

Hi Pam. I see a specialist at M.D. Anderson and I'm also unmutated. He told me that chemo works very well for those that are unmutated but would only give a fairly short remission so he said he wouldn't suggest that for me. As someone else said, we are all different but I would listen to a CLL specialist. Just my uneducated opinion however.

Paula

1 like
Reply

Thank you Paula. I’m pretty sure I’m going to go with the Ibrutinib.

1 like
Reply

Hello. I am hyper mutated he I did FCR IN 2014. Only got a 15 month remission even though I was told it was supposed to last 5 years. Some people get cured on FCR. I WAS not one of these people. Presently on imbruvica since February 2016. So far so good.

1 like
Reply

You may also like...