Diagnosis and treatment of ITP as PLT counts go down after Cancer surgery and Chemo.

[jfmITP]

My platelet counts are lower now, since GIST stage 3 Cancer Surgery and daily Chemotherapy for several months over past 2 years, than ever. I had ITP for years but none of the Hematologists could tell me why. The research I've done indicates I may need bone biopsy as pain and fatigue is chronic since daily Chemo (which I had to stop over 18 months ago due to severe side effects that caused unbearable suffering). Recent pollyps biopsied via EGD were benign but my Platelet Counts are lower than ever. I have appointments to see PCP and 3 of the 16 specialists I've seen since Cancer diagnosis this week, including Hematologist, Rheumatologist and Neurologist. Any suggestions are appreciated, especially if you have similar experience. Thank you!

[tennissenior]

Dear JFM,

Sorry to hear of all your medical issues - added in ITP. I Have SLE, MDS and ITP. I had a bone marrow biopsy, but all that showed was the MDS, which could cause the platelet failure. Our bodies are a mystery. I took a massive dose of the dexamethosone, and they raised my numbers to almost normal (128,000) and within a few weeks, the count was back to 32,000. I refused to take the Dex again, as it caused major stomach pain. A few weeks later, after living with platelets in the 30's, I had a CBC and lo and behold! They were 55,000! My doctor cannot explain it...I don't think anyone can. Our bodies and illnesses are a mystery. Throw in SLE, that I have as well, and there are no answers. The only answer I can offer is ....this, too shall pass.

[Ltinny in reply to tennissenior]

Dear tennissenior, I was very interested in your reply to JFM. I have had SLE for about 17 years. Only in the past 5 years have my platelet counts slowly trended down, the lowest being 38,000. I have had no treatment for it, as I am not having symptoms, except a few small bruises here and there.

I have my blood work done every 6 months. For two of the past 6 months, my counts stayed at 38. The last draw they were 41. It is a mystery. I am hoping mine continue to trend up. I saw a hematologist to rule out anything else causing the low platelets, and there was no leukemia, lymphoma, etc. They also did an ultrasound and my spleen was normal. SLE is under good control.

Thanks for sharing. I think platelets are the most mysterious creatures

[Louise44a]

I developed ITP sux months after chemo and surgery for lung cancer. My doctors do not think it is related to the chemo as during chemo my platelets were fine. They tell me a biopsy is not needed as it won't tell them anything. I am now on prednisone and will start Imuran in new year

[goldylockz1 in reply to Louise44a]

Hi Louise, are you still around? My story is VERY similar and I'm wondering how you're doing and what medication is helping.