ET with RAPID SPIKE in Platets

[GrammyG]

I was diagnosed with ET (with CALR genetic mutation) a few months ago and my platelets which had steadily been rising the last few years suddenly started spiking upward, first jumping in a month as much as they WERE jumping each YEAR… and now suddenly jumping that amount in a WEEK. Has anyone else experienced something similar?

[Solyesh]

Yes, I was diagnosed officially last December, post BMB, ET Jak2+ but have had elevated platelets since 2014..was only on aspirin as the platelets had been climbing but steadily and not much every year (from the mid 700s in 2014 to mid 900s in 2021) then had a spike in one month from 900s to 1.400 - the spike and the fact that I started having bleeding around my gums led my MPN specialist to suggest we start cytoreductive therapy (started on HU and switching to Pegasys). Importantly my doctor said that even at the 1.400 level, given no other risk factors, he probably would have kept me on the aspirin and monitoring regime (just more frequently) but the combination of the spike and the bleeding led him to be a little more aggressive...

[GrammyG in reply to Solyesh]

Thank you, Solyesh! I’m in my mid-fifties, so my Hematologist just has me on baby aspirin for now; although he put me on 2000 mg Hydroxyurea for two weeks recently to bring my platelets down from 1470 before surgery for a GI hemorrhage. My platelets quickly dropped to about 600 before surgery, (and eventually to around 150, with white cells down to 1.0). Since stopping HU, my white cells and platelets have bounced back up… but now, six weeks post-surgery, my platelets are almost at 500, and are increasing at the fastest pace I’ve seen so far. I have weekly blood counts due to how quickly my numbers have been changing. So much has been going on recently it’s all making me pretty nervous.

[Solyesh in reply to GrammyG]

GrammyG - yes, early 50's here and was on only aspirin for quite some time..hopefully they will be able to figure out what is going on..it would appear the good news is that you reacted well to HU (mine have taken quite a while to drop and then have plateaued in the 700s despite being on 1.500mg/day of HU for half a year....)

[Rem31 in reply to GrammyG]

I’m ET CalR and during the 10 months leading up to diagnosis my platelets leapt up quite fast. I found it frightening but then platelets do respond quickly to what else is going on in the body.

Mine have been stabilised with HU for a few years now and they can dodge around, almost never below 400 but nothing dramatically high either. For example they are higher every early springtime when I have barely noticeable hay fever. The HU dose isn’t immediately adjusted as there seems to be a pattern to my levels and follow ups usually show them settling again.

[GardenGal3 in reply to Rem31]

My platelet count was recently in the 800 level. With ET CALR+ there is less worry at the higher count because clotting is less of a factor with this mutation. So my hematologist (an MPN expert) was not overly worried, and thought perhaps I missed a dose of HU or two (on vacation for a while in June/July).

[hunter5582]

Variation in platelet levels is normal. Platelets can vary by as much as 100K in a single day based on what is going on in your body. Inflammation, infection, injury can all cause reactive thombocytosis. You already know that as the platelets rise the risk of hemorrhage also goes up. Some people find this risk elevates as low as 800K.

It would be expected that surgery would cause reactive thrombocytosis. That is a normal response. It will settle down as your body heals. I have had several surgeries in the last few years and this always happens to some degree varying based on the type of surgery.

Your platelet levels are still acceptable based on the protocol many docs use (600K) providing you remain symptom free. It is the trend over time that matters, not a temporary rise in the platelet levels. silvermpncenter.weill.corne...

It sounds like your hematologist has been taking an appropriately conservative approach, initiating cytoreduction based on actual symptoms and risks rather than just the thrombocytosis. Hydroxyurea is one of the most rapid responding cytoreductive agents and makes sense when a rapid response is needed. Particularly at your age it may be appropriate to consider switching from HU to PEGylated Interferon if you need long-term cytoreduction. That would be something to review with your hematologist.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

All the best.

[Wyebird]

Hi, it’s awful isn’t it. I’ve been diagnosed for approx 6 years. Apart fir remaining steady fir the first 6 months and another stint of about 1 year mine have gradually increased. Catch 22. Platelets rise meds rise etc. It’s soul destroying. Every time they rise I would cry and be really low fir about a week. I’ve recently started Peg.

Good luck

[GrammyG]

Thank you all so much for your replies! You’ve helped put my mind at ease about my platelets! I truly appreciate that!

I’m also a bit concerned about the level of fatigue I’ve had for the last six weeks since surgery (open, Right Hemicolectomy). I had been moderately fatigued in the months leading up to colonoscopy where they found what later turned out to be Stage 1 Colon Cancer (Adenocarcinoma). I hemorrhaged 10 days after the colonoscopy. In the hospital before surgery, I had 4 units of blood transfused due to low Hemoglobin (7.0). Hemoglobin dropped with surgery and is slowly climbing (now 10.1). I expected to have some fatigue during recovery, but am surprised to find myself still so exhausted six weeks afterward. I was hoping to start back to work today, but find myself too tired to do much more yet than rest and sleep. I’ve tried grocery shopping twice in the last seven days, but found myself exhausted after about 10 minutes at the store. I’ve messaged my surgeon twice since surgery about extreme fatigue, and have gotten messages back from his Medical Assistant saying it happens sometimes after major surgery, and “should improve soon”. I’m just having a hard time with the idea that THIS much fatigue could be normal 6 weeks after surgery in someone my age (56) who had been relatively healthy. I used to enjoy grocery shopping - but now, I dread it. I try to walk my dog each evening for the last couple weeks (working up to about 1800 steps per walk) and that’s exhausting too. I left another message with my surgeon’s office yesterday, asking if I should see him or another doctor about fatigue at this point. Awaiting their reply.

I know ET can cause fatigue, even without surgery - so maybe that’s contributing. I’ll discuss it with my Hematologist at my follow up in 2 weeks. I just wonder when this level of fatigue would be considered unusual. It sure seems unusual to me!

I would appreciate your thoughts!

-GrammyG