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CLL Support Association
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Progressing cll

So my husband had a biopsy yesterday and the doctor called to say that it isn’t a transformation but CLL progressing. I don’t know much about the different treatments but would appreciate any help. We did visit with an alternative doctor who isn’t opposed to chemo but wants to know where it all started. Thanks for any advice.

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Do you know his markers? Meaning deletions, mutated or unmutated? That will determine choices of treatment and when. Hopefully he can stay on W&W. I was on W&W 12 years. Get second opinion. Does he use a hematologist oncologist or CLL expert?

I got to acupuncture and I did try alternative route and it didn't work. I am in remission now after short cycles of chemo.

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He is 13q but I have never been able to find out whether he is mutated or not. Which test does that show up on? I don’t think he can stay on W& W as his parotid glands are quite large and bothering him. We don’t have a specialist in our area but may need to find one. Our dilemma now is do we go with the standard treatment or try some alternative things first?

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Not sure why you are considering alternative treatments when we know standard treatments work very well. If your husband is concerned about chemotherapy, non-chemo treatments are available in the USA for the first treatment and Mayo Clinic has a good reputation.

If your husband is IGHV mutated, with 13q del he has a good likelihood of having a very long remission on FCR with some going on 15+ years. Mayo Clinic will be able to provide the relevant statistics, which you will not get from an alternative therapy practitioner. Here's a good guide into the latter: healthunlocked.com/cllsuppo...

Neil

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We saw the alternative doc before we had the results. We were not very happy with the oncologist and rheumatologist dismissing the swelling in his submandibular region which then progressed to the parotids.

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I agree ...you need a second opinion ..tell us your nearest major city and perhaps we can find someone... RA may be a complication to treatment choices, I don't know

~chris

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We are about 4 hours north of Minneapolis and 6 from Mayo. RA is definitely a complication but to what extent we don’t know yet.

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I am 13 q mutated and just under 65 so FCR chemo was first recommendation. It worked! Only needed 3 cycles. Was pretty easy. No side effects/bad reactions. Port was great. I just had loss of appetite 2 days and some tiredness for 3 after each cycle. Pre meds they have now are great.

I drove 4 hrs and stayed overnight for my second opinion. Had to go twice 4 weeks apart since they ran additional tests. There are some sites that you can Skype with a doctor and get their opinion without traveling. But I don't know exactly who. Maybe you can research that.

Mutation test.... totally forgot which one...maybe the Flow Cymetry? Very important to know his markers. Ask his hematologist. Keep copies of all tests. 💞

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Funny u only had 3 cycles as my doctor insisted I do all 6 to get maximum benefit which I did not get more than 2 years remission on FCR.. when did you finish your treatment?

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My 2 CLL experts said they were finding some people did not need all 6. That they reached remission after 3 or 4. There would be nothing for the chemo to go after if nodes were normal, marrow was clear, spleen back to normal size and blood count normal. I just finished in August.

I am so sorry you only got 2 years of remission. What are your markers? Are you back on a treatment? 💕

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I’m on imbruvica since feb 2016. I’m hyper mutated no deletions for now but I read FCR can change markers so I don’t focus much on markers. My hematologist insisted on 6 as thats the regimen unless I could not tolerate it than he stops. It’s like killing bad grass. U want to get to the root of the problem. What country r u in?

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USA

How are you doing on Ibrutinib?

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I’m doing fine. Thx

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We have all the tests online. That’s something I didn’t know about; talking with a doctor on Skype. Thank you for the help.

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CLL Society has a free program for a consult online with a CLL expert. Cllsociety.org.

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Thank you.

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