Remission question...CLL: I’m curious if those... - CLL Support

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Remission question...CLL

Estate1 profile image
21 Replies

I’m curious if those here who are in remission can tell me how long they have been and how old they are. I’m a 68 yr old male and finished Chemo 3 months ago. They stopped 6 month treatment (BR) after 3 rd round. My numbers were basically back to normal and CT Scan showed lymphs back to normal.

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Estate1
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21 Replies
The_Eagle profile image
The_Eagle

sound good but you need to have your markers checked such as mutated or unmutated big different. What cells you have such as TP53 or CD19.

Ironj profile image
Ironj in reply toThe_Eagle

I think he would need a new Fish test done to check if thing changed. As I understand your mutation status won’t change. If your mutated you’ll always be mutated and the same goes for not mutated.

Big_Dee profile image
Big_Dee in reply toIronj

Hello Ironj

After my B+R treatment end, my FISH test showed 13q deleted had changed to 13q normal. I was un-mutated and mutation status was checked after treatment. I think doctor wanted to see if there would be change. Lab could not find CLL cell in blood sample to check mutation status. I am not sure it is a given that mutation status can change.

kc1953 profile image
kc1953 in reply toBig_Dee

Mutation status does not change during course of CLL. The only time it can change is if there is mismeasurement at lab, which happens infrequently.

Big_Dee profile image
Big_Dee in reply tokc1953

Hello kc1953

Current thought is that changes in mutation status do not occur over the course of CLL. Apparently my doctor felt it was possible, may be due to my rapid onset and decline of CLL.

Ironj profile image
Ironj in reply toBig_Dee

Hello Dee

I agree and have read that your Fish could change. But I also read that if your mutated or not that never changes. If I’m incorrect I apologize and would like to know for sure. If anyone can clarify that I would appreciate it. Best wishes John

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toIronj

There do appear to be rare occasions when IgHV mutation status does truly change, however most apparent changes are considered to be due to an incorrectly performed test. IgHV mutation testing involves a complex testing process and there are efforts underway to improve testing consistency across different testing laboratories.

Neil

Big_Dee profile image
Big_Dee in reply toIronj

Hi Ironj

At this point I don't know that IgHV mutation status has changed due inability of lab to test. Both tests however were done at Mayo Clinic. Doctor may have also wanted to know why I was doing so well after treatment. Blessings.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toBig_Dee

I would think it very unlikely that Mayo Clinic would have quality/repeatability issues with their IgHV testing.

HopeME profile image
HopeME in reply toAussieNeil

I agree. I believe Mayo does this type of testing for many hospitals in the US. MGH in Boston for instance sends their IgHV testing needs to Mayo.

kaymack profile image
kaymack

I'm 64 and have been in remission since Dec., 2013, after 4 cycles of FCR.

All my numbers are good other than for my gammaglobulins, which are very low. I have been having 4 weekly IVIg for a year. I do not know whether or not I am mutated.

I am 83 years old and have had 14 years remission.

Fowey2009 profile image
Fowey2009

My husband (62) had 4 years remission after FCR. Just about to start Venetoclax. Trisomy 12, don’t know mutation status.

Good luck with your remission.

Beryl

TheFrog profile image
TheFrog

I was treated with FC (no R on the NHS at the time) and have been in remission for nearly 12 years. I was 52 at the time of treatment.

Jacques

Loulou46 profile image
Loulou46

I’ve been in remission for 11 years. I’m a 51 year old female. I get checked every 6 months , blood work always shows low wbc and low gamma goblins. In the last 2 months my joints all over have been hurting so I got more test and they show that I’ve developed some sort of autoimmune disorder. I haven’t gone over my test results yet with my doctor so I’m not sure if it’s related to my CLL or not. I’m not sure if I’m if I’m mutated or not.

Big_Dee profile image
Big_Dee

Hello Estate1

I do not have enough time since end of B+R treatment like you, about 5 months. I am thinking you were un-mutated like me. If you get 3.5 years remission as un-mutated, that is good. The mutated normally get 5+, but just an average. Time of remission is all over the map. Blessings.

kc1953 profile image
kc1953

I finished 6 rounds of BR treatment in November 2015 and have been in remission since...almost 4 years. I have 13q and 11q deletions at diagnosis and am IGVH unmutated. I’ll have my chromosomal markers retested prior to next treatment, which hopefully won’t be for a few more years.

GMa27 profile image
GMa27

3 rounds of FCR. One year remission and feeling great! I am 64. Hopefully long remission for both of us!! 💕

mehall51 profile image
mehall51

I had 6 rounds of FCR in 2015 aged 64. just starting year 5 in remission.

Good luck

Michael

noeagaman profile image
noeagaman

I have been in remission for a year and a half after four rounds of FCR. I'm 13q mutated and 58. My counts have not fully recovered and I'm on monthly IVIG's.

I hope that you get a long remission.

Chris

awasthy profile image
awasthy

I had 6 rounds of (B.R.) treatment which ended 23rd March 2018. I have been on remission since then and hope to keep it up. Wish you the same good luck. I am 74 yrs old and doing well!

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