When is FISH testing done?

[BeckyLUSA]

At what point is the fish test done? Newly diagnosed watch and wait and oncologist has not done one. Do other numbers determine when this test is done? Had my first follow up appointment this week. Numbers only slightly worse than two months ago. Cannot break the cycle of upper respiratory infections so he is working to try and get insurance to approve immunoglobulin therapy. He said my antibodies are low enough that hopefully they will approve. Says it is easier to get private insurance to approve than Medicare (US). Would be grateful for any insights. This group has been invaluable for to me in my short journey. I thank you all!!!

[AussieNeil Administrator]

Hi Becky,

When FISH testing is done depends significantly on where you live. Because deletions, etc can change over time with clonal evolution, it's generally not necessary to do this test until before you start treatment in order for the appropriate treatment to be chosen. In the USA it may often be done at diagnosis, but be aware that:

1) FISH only tests at a high level for the more common genetic abnormalities

2) Because of (1) you can be told you have a 'Normal Karyotype', which just means that the FISH test hasn't identified any CLL cells falling into the limited panel of tests involved

3) You can't un-know your results and may not like what you learn

4) Prognosis only works for a pool of people with deletions in common; the statistics can't reliably predict your unique course with CLL

5) Prognostic indicators are still being identified and their interaction is still poorly understood, which partly explains (4)

Your second question about how best to gain access to immunoglobulin (IVIG) therapy in the USA should probably be asked in a separate post. It sounds like you meet both necessary criteria, low IgG and recurrent infections, so hopefully you'll be granted access to what can be a life changing intervention - a transplant of immunity from thousands of generous blood donors.

Neil

PS I've edited your title so others wanting to know when FISH testing is done can find your question.

[BeckyLUSA in reply to AussieNeil]

Thank you AussieNeil. You guys are the best. It really helps having a ready made group of friends that know exactly what we are going through!!

[Cllcanada Top Poster CURE Hero in reply to BeckyLUSA]

Hi Becky,

You might ask about subcutaneous Ig... CLL patients mention that the weekly under the skin 30 minute infusions work better than monthly IVs and they can be self-administered at home...

Also blood counts will bounce around a lot it is normal immune function, and CLL doctors really only start monitoring when your absolute lymphocyte count (ALC) gets above 30K.

~chris

[BeckyLUSA in reply to Cllcanada]

Thanks, Cllcanada. That is a great number to be aware. A lot of the posts mention things that are far ahead of where I am now, and sometimes I don't want to ask what are probably things most people in the group know. You don't know how much I have learned from this group!! When I saw my oncologist this week he asked me if I had been studying up because I asked him so many questions that people don't normally ask this early on. Thanks again!!

[thompsonellen]

The first doctor I went to was in a suburban Philadelphia practice and they gave me a FISH panel the first visit before I knew to ask, and this was when they were telling me the minimum watch and wait would be 5 years. The panel came back and I came back ultra high risk, and my watch and wait will end next month after just 6 months. I have read that you are more likely to be high risk if you are under 50, which I am, so maybe that's why the did the panel. I do have private insurance and I don't understand the limitations of Medicare, but the answer is no if you don't ask. I've had a sinus infection for two months, so I feel your pain on the infection front. Hang in there!

[BeckyLUSA in reply to thompsonellen]

Thanks thompsonellen - Sorry you are at the end of your watch and wait! There are so many drug choices out there now, I hope they get you on a successful one on the first try. You hang in there too!

[thompsonellen in reply to BeckyLUSA]

Provided nothing pops up at my May 31 screening, I have a slot in the upcoming OSU trial that combines obinutuzumab, ibrutinib and venetoclax for treatment naive patients. cancer.osu.edu/cancer-speci... and at some point this weekend I will try to post the protocol because I expect it will be of interest to others. This is a high risk, potentially higher reward approach, but because I have so many risk factors that suggest I could potentially relapse quickly off ibrutinib and I am relatively young, it feels like it's the right approach for me. My personal goal is to be able to say to my now 16 year old I did everything possible to be there for him if things don't work out...I'm sure most of you can relate.

[PaulaS Volunteer in reply to thompsonellen]

It will be very interesting to hear how you get on in that trial, thompsonEllen. I hope nothing "pops up" at the screening to rule you out. It looks like a combination of three of the most up-to-date new medications, that all attack the CLL in different ways. As you say, a high risk but potentially high reward approach...

Best wishes,

Paula