Feeling down after received IgHV un-mutated and FISH negative for CLL

[nuji]

Just got the reports. Currently in stage 0 wait and watch. Hoping that CLL does not go into overdrive soon since IgHV is not mutated. Hoping for better treatment in the future for this combination. If I can make it to 70 (14 years), that would be great. 😢

[lankisterguy Volunteer]

Hi nooji,I was diagnosed in 2008 at 60 years old and UnMutated Tri 12. Which is usually thought to have about the same prognosis as UnMutated Fish Normal- what you have

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If you click on my icon you can read my profile with the full story of my 6 rounds of treatment with 4 different drugs. I have a very aggresive form of the disease and expect to celebrate my 74th birthday later this year.

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So I will bet you can make 70 with no sweat.

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Len

[nuji in reply to lankisterguy]

Thanx Len for your reassurance and confidence. I’m so glad I found this group. I would have died of a Panick attack had it not been for the reassurances and positive outlook in this group. Wish and pray you live up to 100 with great QOL❤️

[SamanthaJane123]

I hope tomorrow you wake up feeling in better spirits. I personally think it's okay to get down once in awhile as long as you don't get stuck there.

I'm not sure what Fish negative means but while unmutated may not be ideal neither is cancer. Unmutated IgHV doesn't have to be doom and gloom. Medicine has made a lot of progress and there are good treatment plans out there for people like us who are unmutated.

I didn't need treatment for almost 5 years. Just because you got those results does not mean that treatment is around the corner.

Knowing you are unmutated will help in deciding what treatment is best for you which is a good thing. I hope you can find some relief in that. Being unmutated IGHV does not reflect your life expectancy. So many advances have been made and I'm sure there's many more to come. Try not to get stuck in that story.

All the best.

[nuji in reply to SamanthaJane123]

Thanx Samantha. Really appreciate your reply

[Big_Dee in reply to nuji]

Hello nooji

I agree with SamanthaJane123, I had very aggressive CLL maybe because I was un-mutated and 13q deleted. My W&W was only 14 months before treatment. I am now almost 3 years post treatment and now 13q normal. My last visit to my CLL Specialist, he told me I may never need treatment again. Blessings.

[AussieNeil Partner Administrator]

Your disappointment is quite understandable, although I hope it helps you to know that roughly half of us are IGHV unmutated and also about half of us have negative FISH test results. Unmutated IGHV isn't the problem it used to be with the newer, targeted therapies and you can only get one better outcome from your FISH testing - 13q del. Should you get to the stage of needing treatment, there well could be even better drugs where IGHV mutation status is on no consequence.

Neil

[nuji in reply to AussieNeil]

Thanx Neil. Really appreciate your response and dedication to help the CLL community. I can’t imagine how you find the time to read each post and respond to it. 👍👍👍🙏🙏🙏

[Jmiah717]

I am unmutated and have been living with CLL for 13-14 years. No treatment yet.

[nuji in reply to Jmiah717]

Wow! Fantastic! Touch wood. May you never need treatment. What's your neutrophil/lymphocyte ratio? What is your WBC count and lymphocyte %?

Do you have any diet, exercise, daily routine tips?

[Jmiah717 in reply to nuji]

Well, things are definitely trending in the wrong direction. After a recent bout with some lung infections and steroid prescription, my white cell count is over 100,000 currently. I am hoping that will come back down to what it was a few weeks ago which was about 67,000. Nonetheless, weird symptoms frequent infections, etc have been the norm for the last few years and have even led me to have to change jobs and career aspirations. Sounds like we are in a bit of a different place in life as I am not yet 40 but nonetheless it has been mostly tolerable. I am actually hoping for some treatment relatively soon because I would quite frankly like to feel a bit better. My oncologist tends to be quite conservative and I'm not sure what it will take for me to convince him to let me do treatment. I hope you have a long time without any treatment and a longer mission if you ever do need treatment.

[nuji in reply to Jmiah717]

So sorry to hear this. Will pray for your recovery and better QOL. Hang in there. What is your oncologist's logic to not start treatment?

[Jmiah717 in reply to nuji]

Well, numbers mostly...and probably my age. I have been experiencing symptoms for quite some time but he often does not think they are related to the CLL. He is one of these rockstar CLL specialists, so I do trust him, but I'm not sure my experience lines up with what he keeps telling me. I will see him again in September unless something changes before then but I may advocate a little harder. I could do a clinical trial but where I go is 3 hours away and clinical trials often require quite a bit of back and forth, something I just can't do with my work schedule right now. If things get a bit more dire, or my work situation changes, I will certainly consider a trial. I have learned, through some spiritual practices (meditation mostly), how to handle this. I'm a mental health therapist so I at least have some idea of how to make sure I get support psychologically. But I am definitely still learning. Hopefully, you'll be like most of us, and just sort of put this out of your mind until it starts causing you problems. Easier said than done, but I can say there were quite a few years that I didn't dwell on having CLL. I thought about it, of course. But I was able to move on knowing that I was doing okay.

[Jmiah717 in reply to Jmiah717]

Oh and I wanted to add, I freaked out when I realized I was unmutated. Which was not something I realized until about 10+ years into the diagnosis. With my slow progression, I assumed I had to be mutated but nope. My oncologist assured me, that with the latest and greatest drugs, it doesn't mean the same thing it did when everyone got chemotherapy. It really just tells them that you should not be a good candidate for chemotherapy due to how unmutated folks respond. But there have been little to no differences in response with the latest generation of drugs in mutated vs unmutated.

[nuji in reply to Jmiah717]

Hope, wish, and pray all goes well for you. Thanx for sharing and reassuring.

[aptucxet]

Hi Nooji, I am 87 years old and was diagnosed 8 years ago with 11q deleted and unmutated.........rather poor markers.........however, I have had no treatment.....my white count varies around 20....neutrophils over 2...hemoglobin low normal....hopefully, you may experience many years without needing treatment.

[nuji in reply to aptucxet]

Great going aptucxet. Lovely to hear this. Keep it going. Will keep routing for you and cheering along.

[DelrayDave]

I am trisomy 12 AND unmutated. Diagnosed at first treated at 70, still driving (well, I am told) at 80 and a half. No reason at all you can't make 80, 90, whatever, with the new drugs and more coming. 70 should be a breeze.

David

[nuji in reply to DelrayDave]

Thanx David. Nice to hear you are doing well. Also, thank you for your encouragement. I will do all that's possible to keep going.

[MovingForward4423]

I'm the same. Started Ibrutinib 7 months ago, blood's are perfectly normal and my spleen and nodes have gone. Keep fit, keep positive, and be thankful that they just be close to curing CLL.

[nuji in reply to MovingForward4423]

Thanx movingforward. I have this great community to keep me in a positive frame of mind. I have started a strict diet regimen. I am doing a strict 16:8 intermittent fasting, have stopped all added sugars, quit all forms of food with casein, and doing a 36 hours fast between 6:00 PM sunday and 12:00 noon on Tuesday. Exercising regularly as well. My only problem with all this is I'm missing my thrice a week tipples with my buddies. I'm still not sure if I should totally quit my beers and single malts which I love to partake in. Any idea if 180 ml of whiskey in a week over 3 sitting is too much?

[MovingForward4423 in reply to nuji]

Once you have a cancer diagnosis suddenly everyone wants to become super healthy. Its kind of closes the barn door after the horse has bolted. Also, there is no evidence CLL is caused by diet, it's simple genetics and bad luck. Personally, I have stopped alcohol, I don't smoke, and I stay reasonably fit. I eat healthily but I don't go over the top. If you want to drink Whisky, then do that. If you want to eat a big fat burger, then do that. The most important thing with CLL is staying fit and active, when treatment comes it's clear that healthy and fit people will have the best outcomes. Don't let CLL define you, be yourself and live with CLL. As you will see on this forum, many people live with the disease for decades.

[nuji in reply to MovingForward4423]

Agree with you 100% on all counts

[Mindy21]

Sorry to hear of your prognosis. I also have non mutated genes. My oncologist is recommending a new drug called acalabrutimb when I will require treatment. He seems to feel it will be an excellent drug of choice for me as it targets the cells. Best of luck!

[nuji in reply to Mindy21]

Thanx Mindy. Wish that you will not require acalbrutinib at all, and if you require treatment in the very distant future, acalbrutinib would already have been antiquated. Cheers!