u/GrowCoffeeLikeMe

Hi, im a 52 M from India, post transplant and in remission since April of 2004. I was diagnosed with AML adverse risk (TP53), underwent 2 rounds 7+3 (cite+donu) regime and was very lucky to go into remission. Following this my doc went ahead with conditioning (hidac+busilfan) which was administered in the highest dose 250mg/kg.

This was as intense as it could get, and fortunately for me despite tje rough journey and lots of hurdles and adverse moments along the bmt till almost 1.5 years involving Acute grade 4 gvhd ( gi tract), skin gvhd grade 3 and skin cgvhd+grade 2 liver gvhd, I'v made ut upto here.

Many a time, I felt like the BMT was more devastating than the cancer suffering itself. But the fact that I survived these lows made me realise that God was testing me.

Now my latest problem since the last 6 months is ocular gvhd whis has taken a toll on my eyesight. Constant blurring, cant see objects well, eye pain strain etc.

I have tried almist every thing so far but with no noticeable improvement.

Only thing is cataract surgery but this I heard wont change my eyesight significantly as the lack of tears and lacrimal gland dysfunction due to tissue scarring has remdered the production and flow into the eyes.

Sorry for the long post.

Im on tacrolimus+jakafi+mmf immunosuppressors and also methyl pred 4mg alt days.

Iv been using cyclosporin drops for the last 4 months and even prednisone drops.

Im starting belumusadol in a day or two.

Any success stories with other options which have worked for others will be much appreciated.

Hi all Im a 51y male from Bangalore, India. I was diagnosed with AML in 2024 with (TP 53) high risk mutation.

I underwent 2 rounds of 7+3 induction and re induction to achieve mrd-ve and then had the most exhaustive and testing consolidation myloablation (bisulfan+cyclophosphamide) I read now that this is as vigorous as it can get. Following this i had SCT. Im 2 years past the SCT and in Remission by Gods grace.

While I was undergoing my treatment, someone who was known to me got diagnosed with AML (tp 53) who unfortunately didnt make it.

2 days ago, my best friends wife was Diagonesd with AML and the investigations are underway.

My interaction with the AML cases this far all suggest to an increasing trend of rising AML cases here in India. We all share a common concensus that the Covid shots has a lot to do with this now, since this deadly disease is so much on the rise that it gives me jitters.

Does anyone else share the same viewpoints? Your comments and thoughts are much needed and will help in better clarity.