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  • tonymarinello
21 May 2023 12:47
Bone Marrow Transplant Info? was created by tonymarinello
I am gettting a Haplo BMT. . .anybody have any experience?
  • mrsb04
22 May 2023 08:27 - 22 May 2023 08:29
Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
Count on Friday 19th was 10,  2 days after a Covid vaccination and 4 days after stopping Fostamatinib. Extra 20mg Avatrombopag taken on Saturday.

This morning (22nd) count is 23. I have just been to clinic and now going to take Avatrombopag 20mg on alternate days and retest count weekly unless I stabilise then it  can to fortnightly. Back to clinic in 8 weeks. 

My digestive system is much more settled since stopping Fostamatinib. 
  • CindyL
22 May 2023 09:02
Replied by CindyL on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
Oh, mrsb, you surely are a yo-yo!  23 isn't bad for you.
I am glad to hear that your digestion is better!
Hugs from across the pond! (Canada)
  • MelA
22 May 2023 18:56
Replied by MelA on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
mrsb that 10 we don't like - I'd bet it was stopping the Fosteamatinib, what do you & the hematologist think?
Glad you are off that though, your digestive system was taking a beating.    

Now that 23 is going in the right direction - I pray that continues for you, upward to a comfortable count and then stabilize!

Hugs!!
  • mrsb04
23 May 2023 04:07
Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
I'm not sure Mel I had 2 counts of 5 whilst I was taking Fosta.
I am glad just to be on just one medication. Combinations are all well and good but how does one know which one is working? Or are  they combatting each other? 
  • JJ
29 May 2023 20:01
Replied by JJ on topic Can supplements lower your count significantly?
If you're having vomiting and diarrhoea every day then you need to see a proper doctor, not someone who's simply going to give you supplements.
  • mrsb04
30 May 2023 05:49
Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
197 this week 
  • CindyL
30 May 2023 07:01
Replied by CindyL on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
Wow!  That's quite the jump in a week.
And that's with only taking the Avatrombopag on alternate days.  Or has that changed?
My heart goes out to you mrsb!
  • MelA
31 May 2023 00:05
Replied by MelA on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
mrsb, mrsb, mrsb - as Cindy said, that is quite the jump in a week.  You are a mystery my friend!
Are you staying on meds as is to see if things will even out?  
Sending good thoughts to you!!!
  • mrsb04
31 May 2023 04:16
Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
Thank you both. Staying on alternate days this week. Retest on Friday and then a dose decision after the result. 
  • AsMom
31 May 2023 16:39
Covid vaccination--are there any updated protocols? was created by AsMom
I tried to search for what I needed, but all of the posts seem to be more than a year old and I'm wondering if there are any updates in protocol. My daughter has been in remission for 5 years after a very rocky road and treatment with prednisone, ivig, and Rituxin. She would like to pursue a phlebotomy course, but is not eager to have the required covid vaccine. She's already survived covid twice, and is concerned about the vaccine pushing her out of remission. I read about a study that showed (I think) that 12% of ITP patients in the study had a severe exacerbation of their ITP. Is the recommendation to be vaccinated still as firm, even if one might potentially have built some natural immunity?
  • ImPatient
31 May 2023 18:24
Replied by ImPatient on topic Covid vaccination--are there any updated protocols?
What does your doctor say, and does he/she know what's in these products?
  • ImPatient
31 May 2023 18:27
Replied by ImPatient on topic Nutrition and Platelets
Margaret yes Papaya. Curious to read about your experience. I can't say for sure whether it worked for me or not, because I was taking it while on Prednisone and my platelets dropped so much I had to take Dexa + Nplate, later Revolade. So, it's possible my platelets would've dropped more quickly without Papaya, or it's possible it did nothing... for sure it didn't do enough.
  • AsMom
31 May 2023 18:42
Replied by AsMom on topic Covid vaccination--are there any updated protocols?
I'm honestly not sure, but I was looking for current general protocol. :-)  She's been unhappy with her doc and because we live in a rural area there just aren't a lot of choices. 
  • MelA
01 Jun 2023 00:05
Replied by MelA on topic Covid vaccination--are there any updated protocols?
I don't know what the current protocol is - however I have had 5 covid vaccines, the recommended amount and I am now old enough to get a 6th.  I've had ITP for 34 years.    It is too bad your daughter is unhappy with her hematologist - however it might be good to get his/her opinion on the matter. 
Displaying 71716 - 71730 out of 72107 results.
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