Hi All
I was diagnosed 31.05.2019, and in hospital within hours.
Unfortunately after being in remission following the first 2 months of chemo regime, in month 3 suffered a septic shock and was in a coma for 7 days .
Surprised every one by waking up, but was told I would not make it to transplant because body had taken such a battering.
Left ICU and back on ward before being discharged late October 19, and placed on Ponatinib.
Bloods gradually recovered and confounded my consultant with Ponatinib getting me to minimal residual disease for last 14 months, and physically back very active.
The transplant is now back on the table with 2 matches waiting, but not wishing to do this unless in complete molecular remission.
We tried Blinatuzomab for 30 days but didn't work, but surprisingly Ponatinib has suddenly reduced my BCR-ABL ratio to 0.005 so extremely minimal.
Currently on a preventative 4 intrathecal injection course which has hit my platelets & neutrophils, and suffering some tummy trouble & mucositis half way through course.
Any tips on managing the mucositis, and anyone else with an experience of being on Ponatinib long term as now been on it 17 months which seems to have surprised my consultant as to how long it has protected me.
Good luck to all.
Cheers Adam
Hi
Sounds like you have had a really tough time of things so well done on getting to where you are now. I haven't had any experience with Ponatinib so I cant help you unfortunately. It may be worth posting in the Stem Cell transplant forum as there are many people who have many different treatments. You can get to the forum by clicking HERE .
I did have a run of intrathecal injections and I also had problems with platelets (which lead to the BK virus becoming active for a while, apparently many of us carry it but it lays dormant until platelet levels are very low) and I suffered with dizziness and terrible headaches. Stomach troubles seemed to be an ongoing issue during treatment! Mucositis I didn't get but once again there are people who have had that on the stem cell transplant forum.
Sorry I haven't been able to offer any more advice or help but hopefully you may get some answers in the other forum.
Paul
You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.
Hi Hopefully you are continuing to feel better stomach wise and the suspension of the intrathecal chemo will help with the platelets (and lets be honest they aren't fun either!!). To have two possible 10/10 ,matches is great. Mine was a 9/10 but it did the trick. I am sure you will get rid of those last few blast cells and then be able to move forward.
Paul
You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.
