Has anyone had more than one FISH test?

[steve_canada]

I’ve been on IB for two years and 17p deleted and was wondering if the genetic mutations could change?

I asked my oncologist and he said if I did the stem cell transplant he would request it but have any of you had a second test?

[Wheatkings]

Hi Steve - I’m being treated at Princess Margaret in Toronto. I had my first FISH 3+ years ago when first diagnosed and then again this past December as I wanted to ensure that no changes had occurred prior to starting FCR.

[steve_canada in reply to Wheatkings]

Hi Wheat, I met with Dr Lipton at PMH about stem cell transplant. Something I am not very keen on right now.

Did you ask your doctor for another FISH or he suggested?

[Wheatkings in reply to steve_canada]

Hi Steve - I asked my doctor for it, based on what I had learned on this site and the CLL Society’s “Test before Treat” paper. My specialist was a bit reluctant but agreed to it based on how keen I was to have it done. The FISH showed no changes but it gave me peace of mind before starting treatment. I’ve been very happy with the care at PMH and take comfort that their specialists are world class.

[lankisterguy Volunteer]

Hi steve_canada,-

I have had FISH testing before each of my 4 treatments. It can change, especially some of us can have a 17p deletion appear and eventually become dominant.

-

Here is a link to the CLL Society explanation of why everyone should have them before every treatment. cllsociety.org/cll-101/test...

-

Len

[steve_canada in reply to lankisterguy]

Hi Len, I am curious as to how our genetic markers could change after starting treatments. I mean if my genetics got screwed up somehow and did this 17p deletion - could it undelete the error it made?

Call me an eternal optimist - but the human body is capable of great things and I am a firm believer in the mind/body connection.

[lankisterguy Volunteer in reply to steve_canada]

My doctor says that some patients start out with multiple clones ( complex karyotype) but some of them are very few in numbers, but as we are treated the easy to kill clones (like 13q) are killed off and the tough ones (like 17p) survive to become dominant. -

Len

[cajunjeff]

Steve, here is a link to an index of Cll dummy articles I wrote. Read the ones on clonal evolution and FISH testing if you want a simpler explanation of how our FISH test results can change.

healthunlocked.com/cllsuppo...

It is typical for the size of a deletion to grow over time. If one was 20% deleted 13q on a FISH test in 2016, they might have 40% of their cells show 13q deletions on a FISH test in 2020.

Treatments can eliminate Cll clones such that your FISH could return to normal. Since Cll is still considered not curable, it’s more likely that treatment either just slows Cll down or kills the easier to kill clones allowing the more dangerous clones more room to grow.

We are seeing some people likely cured with FCR and will probably see more cures with new combinations. A stem cell transplant can be curative. By definition, a cure means a FISH test would come back normal.

I know you have written you are a great believer in body/mind connection, I think having a positive outlook does confer benefit. I don’t think positive thinking kills Cll cells. A stem transplant can as can many of the treatment options we have available to us.

[SofiaDeo]

I had a FISH when I was diagnosed a decade ago. I had several treatments and an almost 5 year remission, then 3 years of unsuccessful treatments. I had a repeat last year. It changed slightly, but still have my 17p and 13q. They tested 6 probes.

[steve_canada]

That 17p is a S.OB

[morepork]

I agree. I tried cuddling up to mine in case that would persuade the 17p to leave me after such a long relationship together but no - still hanging around .😁

[steve_canada in reply to morepork]

Kinda sounds like my kids....🤔

[morepork in reply to steve_canada]

LOL

[ivy39]

Regarding FISH and mutations. When I was first diagnosed I was told I was 11q deleted. Years later, and after treatment, FISH no longer "saw" the 11q deletion. It is my understanding that for a deletion to show in FISH the concentration of the gene has to be of a certain size to register so I have always assumed that I am still 11q deleted but the 11q numbers are below a certain threshold and hence don't register. Does anyone have an alternative explanation?

[Mystic75]

Hi Steve,This may have absolutely no relevance to your situation but since you asked about FISH tests, here is our experience:

My husband had three FISH tests prior to his initial treatment.

The 1st and 3rd identified the same abnormality - done about 8 yrs apart.

The 2nd was a smorgasbord of abnormalities, including 10% 17p/T53 also done about 8 yrs from the 1st and 5 months prior to the 3rd.

Between the 2nd and 3rd we got a second opinion, consulted with a CLL specialist, which led to my husband participating in a clinical trial, where he then got the 3rd test.

So what about that 2nd test? I don't know...except tests are done on samples so different samples were obviously used. Also, the same time my husband got the 3rd test, his IGHV was tested and the results were he was mutated, which may make a difference. Or maybe some error was made.

Not sure how easy it is to consult with a CLL specialist in Canada as opposed to an Oncologist, but if you can, that would be my recommendation. Wheatkings mentioned 'peace of mind' and that is enormously important.

All the best,

D.

[Claybuster]

When I was first diagnosed in 2018 the Fish test ordered by my local oncologist/hemo determined that I was 13 q deleted with a 6.4% IGHV mutation. Minimal deletion at 13q-nothing else. Then in 2019, I saw a CLL specialist ( Dr. Byrd) who again ran the Fish test and determined that I was 14Q deleted with a 2/18 translocation--simple Karyotype. with a IGHV mutation of 6.4%. No 13q, but the Fish did show 1 signal at 13Q and 1 at 17p. I am not sure what the signal means. ( does anybody know?). I am w & w since 2017 when my WBC was 12, now at 48!