I’m a first time poster, newly diagnosed Cll having 36 year old man in the US. I’ve been reading all the pinned posts for last few weeks and it’s all been very helpful.
That being said I’m awaiting my mutation and Fish results currently, and hoping for the best as we all do. I’ve read a lot on the subject here, and which flavors of Cll are traditionally more desirable.
So I’m trying not to panic, and accept whatever the dice has in store for me. If you were getting your results again, how would you feel? How important are these factors in the new age of targeted medicine?
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Snakejaw
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A big welcome to you! You have come to a super special place.There will be people who will reply to answer your concerns. All I am able to share is the fact I have been diagnosed for 33+ years and I am currently on my third line treatment. I do take IVIG every four weeks as my immune system is very poor and the IVIG keeps me in a safe place. I am doing super great and have been on Calquence going on 8months.
One just never knows when or even if one will ever need treatment. But there is just many treatment and and more in the pipeline. You will be just fine…take lots of deep breaths and be positive!!! Hang in there it is truly a roller coaster ride!
keep pushing that 33 plus years thing. that is probably the most encouraging thing a person can hear
Hello & you have found the best group of folks!! I found the firum after my husband's diagnosis almost 2 years ago. I've already noticed that alot of what I googled prior to finding this site, has been updated. So, the research and treatments have made significant progress. I wish I saved myself from that "rabbit hole". But it eventually brought me here.
So many patient, knowledeable, kind, helpful members here. I truly consider this forum my own lifeline to my sanity!!!
Welcome to our community, snakejaw. I'm glad you found the pinned post section helpful.
To answer your questions about prognostic markers, the really big influence of IGHV mutation status has been significantly reduced with targeted therapies. In some clinical trials, no difference or even a slight advantage to being unmutated has been reported.
In most countries, it's difficult, if not impossible (unless perhaps you privately pay for testing, which could involve sending a blood sample to another country), to get prognostic marker testing done beyond the results from the flow cytometry diagnosis testing. That's because prognostic markers can change over time (with the exception of IGHV mutation status) and clinically, you only need them to determine treatment type. Unusually, I was able to get FISH testing done in Australia back in 2009 just after my diagnosis. I was only able to get my IGHV and TP53 mutation status checked 10 years later, when a charitable donation to fund this testing for those approaching treatment was made.
Prognostic testing is only indicative; our trend towards treatment indicators remain our best indicator.
Oh that’s interesting, maybe I misheard the doctor in regards to what’s being tested. I came in to the office with swollen lymph nodes in my throat (about 3 cm), and they wanted to rule out richters transformation. So I have an appointment in a week to assess that as well as a body scan.
My nodes have come way down the last few days, I had a virus that I think triggered them, or at least that’s what I’m hoping for. So maybe that would justify doing the fish now? Or maybe I’ve just got the whole thing wrong. I’m still learning a lot.
Are you being seen at a large teaching hospital? I ask because this is where CLL doctors typically reside. If not, are you aware of the CLL second opinion service offered free to those who reside in the US? It really pays dividends to be seen by a CLL specialist.
Thank you for mentioning the second opinion service. I’m fortunate to live near the Mayo Clinic, and while I’ve only seen a hematologist thus far, they have a few Cll specialists there that I can see.
As AussieNeil has already explained, getting some of the testing done in many places is only possible when treatment is near and so, as a consequence, I also received my results in a drip feed way.
l had to wait until treatment was near before my TP53 and IGHV tests were done. I had FISH testing done soon after my diagnosis and again just before my treatment was decided, to check for any changes that may have occurred since diagnosis.
At present, testing is used to guide what treatment a patient should not have (egTP53 mutated and/or IGHV unmutated CLL patients should not have chemoimmunotherapy if targeted therapy is possible).
In the future, genetic and molecular testing might also guide what sort of targeted therapy a patient might benefit from best and perhaps even what treatment sequences might be preferable for individual patients.
We're not there yet but, as technology continues to improve, and hopefully gets cheaper, it's likely that more genetic and molecular information will inform treatment choice and drug development in the coming years.
I found out on our anniversary in a call from my primary care provider. I was shocked at the diagnosis but at the same time, I realized it explained a few things in my medical history.
I was lucky to be referred to a CLL specialist. She was able to explain about Watch & Wait and why treatment is not necessary at first. I was also reassured that CLL is a chronic disease rather than acute.
Our kids were more frightened than we were. One of their high school friends had died after being diagnosed in four days.
I was told that there were two things I should focus on - get up-to-date on all vaccinations and exercise. So, we did. And until Covid emerged, we rode our bikes almost everyday. I finished my first triathlon on Mother’s Day at the age of 67.
When Covid arrived, my feelings about CLL changed. It became a serious threat as opposed to a nuisance. And so it remains over two years later.
This site provides the most amazing information from others with CLL/SLL. I have found hope and comfort.
Hello and welcome to our community. This is a club which none of us signed up for.I was diagnosed in 2018 when I was 66. I am in the UK. I was watch and wait for three years but have been taking Acalabrutinib since last August with good progress.
I was distraught when I got my diagnosis and could only see a black hole. Eventually I accepted it for what it is and decided to get on with life. Then covid hit us and stopped all movement. I want to get back some travelling again soon.
I had never heard of CLL and it wasn't expected, I had been investigated for Myloma. I would have liked to have had a chat straight away with someone who 'actually ' had CLL but it was left to me to find this site and Leukaemia Care. In the US you have good support from Blood Cancer so would suggest you join their forum.
Above all, remember, that this is a Chronic disease and you are more likely to die WITH it NOT of it.
Welcome - it’s always hard to not immediately panic. I was advised to find a consultant who specialises in CLL, that I did - I at last started to get the sort of answers that made sense & set my mind at rest.
Welcome! I was also 36 when I was diagnosed. It wasn't fun but it's good that you found this group so quickly.
I was told my markers immediately as is the norm in Germany (mutated, 13q14, trisomy 12) and told I'd probably have a long W&W which was absolutely not the case: I was sent to treatment after just 3 years because my platelets dropped so low. Fortunately, the timing was perfect, and I got V+O right as it became available in the EU. I'm now MRD- for a full year and some days and my immune system seems to be in mostly full working order: I had COVID unfortunately and passed it fairly easily. I have otherwise not been sick at all post-treatment except for one case of food poisoning—totally different from my life prior to treatment, where I was constantly catching colds, strep, bacterial infections, etc. I'm sure some of this is due to continued masking but I also truly believe that my immune system has improved.
Welcome Snakejaw. You have found a great group to learn about CLL from and to get a lot of support from as you travel down this road that we are all on. I was diagnosed in 2015 and it was a great shock to my wife and I. I had good markers too but needed treatment after two years due to a swollen spleen and always getting sick. They did a bone marrow biopsy and found that my marrow was 95% infiltrated with CLL cells. I was offered FCR and took that. I am now in remission with incomplete recovery, but feel much better than I ever did before treatment. Hopefully you will have a long watch and wait period and then be offered a great treatment plan if you ever need one. They say that some people never go out of watch and wait so that could happen to you too.
I think the first thing to say is just ignore published life expectancy stats for CLL, the modern targeted treatments have changed everything. As regards yourself even at your age my guess is that you are more likely to die of something other than CLL at a ripe old age. I live in the UK but still recognise the Mayo Clinic is probably the best place anywhere for you to be treated.
When I was first diagnosed I sought out a leading specialist in CLL ( Dr Piers Patten) and found one at Kings College hospital in London. I would advise for your own peace of mind you do the same at the Mayo. Its not that that individual is likely to tell you anything different to your local Haematologist, just it will give you confidence in your current situation.
Once I had done that I then took some time to review how I would manage this illness. I thought there were basically two options, I could either spend a lot of time personally researching it read all the published papers etc and insist on as many tests as possible. Alternatively find a knowledgeable doctor who I trusted and just follow their advice whilst getting on with my life. I actually embarked on option one initially but then after a couple of years changed. I found a knowledgeable Haematologist in my local hospital and let them do the research on treatments and simply took their advice on the way forward.
I am not saying that either option (or a combination) is the best, just you need to take some time to work out the best way you can manage this chronic illness and not let it interfere with your life any more than absolutely necessary.
The only other thing I would add is I take every opportunity to control what happens to me. For example in my case I decided to double the amount of exercise I took, cut right down on alcohol and when I went for treatment provide all my own food etc. Even though none of this has probably made any difference but in myself I feel at least a modicum of control.
Appreciate all this, it’s all very helpful . I’m in the middle of finding agency in this whole thing for myself. Part of that has been stopping drinking, continuing exercise, and trying to eat better. Like you mentioned, it might not make any difference, but it’s making me feel like I have more control of the situation. Worst case scenario I make a few better life choices.
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