I was just diagnosed last week. Wbc of 14 and alc of 8.8 - no symptoms or lymphadenopathy. My tests were just completed and everything seemed very favorable except one thing. The good was low ldh (138), low B2M (1.79), low CRP (.05mg/dl), only 13q14 deletion on FISH (everything else normal on that test), negative on TP53 mutation, strong RBC numbers, and CD38 negative (18%). The bad result was unmutated igvh. Can any of you in a similar situation tell me about what the significance of unmutated igvh is when all other factors point to favorable? I've read a lot of about each of these individually (this is "good"; this is "bad"...) but when you throw them all in one pot and there is this one discordant factor, which is a bad one, what does that do to the big picture? Thanks!
Just diagnosed. Pretty confused: I was just... - CLL Support
Just diagnosed. Pretty confused
Welcome to our community!
Congratulations on so quickly gaining a good understanding of prognostic markers. You are right that you've only scored one possibly poor marker in being unmutated IGHV. What's important to keep in mind is that these markers are only indicative - they are based on statistical analysis of like groups and there's considerable spread, including people with unmutated IGHV that can go for decades without needing treatment and those with mutated IGHV that end up having only months before needing treatment. The challenge is that there are other markers that are also being explored that can influence how chronic our CLL is and until we get long term data on these, we won't know how they can influence trends.
In addition to having the most favourable FISH marker, 13q del (strangely better to have than if no deletion is reported), of most importance, is that you are CD38 negative. That provides a similar and independent indication of a likely long time in watch and wait like mutated IGHV. The best way to determine how indolent your CLL is, is to monitor trends in your absolute haemoglobin, platelets and your lymphocyte doubling time, which needs to be above 30 before it really gets the attention of your specialist.
As a new member, you'll find posts that will be of particular help to you in our Pinned Posts section here: healthunlocked.com/cllsuppo...
Neil
Thank you so much! My doctor has been on vacation so I don't get to talk to him about all of this until next week which adds to the anxiety of it all. I'm new to all of this but I know enough to be able to say it could have been much worse!
Hi goyo457 We are in the same boat, relatively good markers for CLL but unmutated. Neil is right nothing is set in stone, but there are far worse forms of CLL (and some of those folks are much better than one would first think).
When I started learning about mutated / unmutated, I ask my doctor, I was told, "It just means we will just use different medicines for your case if we ever have to".
When you start looking at other peoples profiles and lab reports you'll get some idea of what to post in your bio, it makes it easier to relate more specific comments to your situation if the know those values. Of course you may have more labs to take before you can post so take your time.
Other points, before you post think, can anyone seeing this lab identify me by personal information? And lock your post, that means before you actually add your post use the drop down box so that only your community can see the post, it keeps you from telling the whole internet and only members get to see your post.
Welcome🙂
Thank you! I'll know more next week when I finally get to see my doctor again. When I saw him and he diagnosed me, he said, "don't even worry about this; it's not going to be a big deal for you. Just forget about, live your life, and I'll see you in a few weeks." He didn't have many of my results at that time so I don't know if he was just trying to pick me up or if he saw something in my first set of numbers that said I'd be ok... I guess I'll find out more soon!
goyo457, our markers are the same. I was diagnosed 4 years ago with a WBC around 54,000. I'm at 180,200 now and doing fine. My doctor says I may never need treatment. Since on this forum of "friends", I have seen treatment options greatly improve and the research continues at a strong pace. Be watchful of your health, nutrition and a mask if needed in a large crowd. I've had covid twice, once pretty bad and the 2nd like a flu. I'm 75 and am most grateful for this group. 😊Sandra
Well, in terms of cancer he is trying to put yours' in perspective. It is hard when most of us are trained to think of acute immediate life threatening cancers, the doctor has to show us that a chronic cancer like ours is not an immediate death sentence.
Rather, with good health choices and good management ahead of time, the slower course will allow the newer types of therapy to give us choices and time. Now, there are no promises in life for anything, but, given your health factors your doctor isn't lying to you, they are just telling you, you'll have plenty of time to learn about this and get a clear picture. Give it six months to get a reasonable picture of your health and maybe a year to or so to deal with the many feeling that you may experience.
Just take your time, the only bad question is the one that goes unasked. We are not doctors, mostly people who have the same challenges to some degree. But we have very wise and experienced members with a strong desire for facts based information to help guide us in a medically safe way.
We are people, we'll have our ups and downs, some sad news some really great to hear news. Some questions that bring up topics that people feel differently about. But, at the end of day we're here for one another.
Think of a lifeboat you just got in, and there are 22,000 people with you - some are feeling fine right now, others maybe not so much. But we get it, because we've got it too. 🙂
Very wise; thank you!!
He wasn't just trying to "pick you up"; if certain numbers look "bad" you are seen right away. I was initially thought to have an acute leukemia; I had bloodwork on a Monday afternoon the day after Christmas, got a phone call from the doc the next day, was in a hem-onc office by Friday. Even with skeleton staff over Christmas vacation, I was seen pretty fast.
I got diagnosed as an investigation of acute illness, if yours was from routine bloodwork, there usually isn't a need to rush rush.
Read up on vaccinations before you see him next. Lots on this site. The next step is to get some extra vaccinations against risks like pneumonia.
And to consider overall fitness and risky behaviours. I am assuming that you are a non smoker.
Getting up to date with non-live vaccinations as soon as practicable is something CLL specialists the world over agree on. See: healthunlocked.com/cllsuppo...
Neil
I'm seeing my GP today to line up vaccines. I have never been a big "vaccine-guy" but that has to change
Strangely here in NZ I have found my hematologist and GP are very vague about doing the Shingrex and Prevnavar vaccines when I quote this advice to them.
Shingrex had been advertised for the general public a wee while ago but at quite a cost when I enquired as had to be ordered in - Haematologist on the phone re Shringix said vaguely that it might be an idea, as if he had never heard of this usage or ever advised it!
Yes - non smoker. Going to the GP in a few hours to line up a vaccination plan!
Wow, that's a really low CRP! As good as it can get.
Seems there are 2 ways to report CRP: Mine is .55mg/l or .055mg/dl. Some might be more used to seeing it expressed in mg/l and, it that case, mine is .55. The so-called "normal range" seems to be all over the map but it does seem that my number is more favorable than not.
My Cll is similar to yours. My Dr says I will die with it but not from it. Take a deep breath and live your life normally. 😊
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