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  • JandS
07 May 2023 04:12
Replied by JandS on topic Mayo or Cleveland ITP MD?
Oh, my! Point taken. Thanks for sharing; I'm glad you were able to keep your spleen!
  • CindyL
07 May 2023 10:06
Replied by CindyL on topic Queen Camilla Question
I'm with Mel, can't call her Queen.  Does her Consort title also have something to do with the fact that she is King (gotta get used to that!) Charles' second wife?
Did you get up to watch the Coronation, mrsb?
  • MelA
08 May 2023 00:18
Replied by MelA on topic Mayo or Cleveland ITP MD?
I haven't looked but I wonder if the sites for Cleveland Clinic and Mayo Clinic have the name of the head of the Hematology dept [or hematology/oncology] - could write him/her to see if they have a suggestion on who to see.

I have had a few hematologists since the start of ITP, including one in Tokyo & one in Hong Kong - one here was so so so fantastic but unfortunately he passed away suddenly, his wife wrote each of his patients a personal letter letting us know how much each of us meant to him.  Now I have a hematologist who absolutely LOVES blood (he is also an oncologist because he said you can't just be a hematologist, you need oncology too) - my first visit with him he had a flip chart made up about ITP and also gave me a hand out he'd written about it, he knows a lot about ITP and with that flip chart and handout he had me forever a patient.   After all by the time I became his patient I'd had ITP for over 20 years.  He is a super hematologist, I pray I never need him as an oncologist!   

I do hope you find someone to help you at either of the clinics - seriously, you might write (or email if you can get an email address) the head of the hematology department for advice as who to see.  Or call and get the hematology department.
  • mrsb04
08 May 2023 05:24
Replied by mrsb04 on topic Queen Camilla Question
Does her Consort title also have something to do with the fact that she is King Charles' second wife?
No it doesn't  Cindy the spouse of a monarch is always a consort. 
Yes I did watch it. 
  • JandS
08 May 2023 08:32
Replied by JandS on topic Mayo or Cleveland ITP MD?
Thank you for this heartening reply! I am so glad that you've found a wonderful hemo MD; I hope he does well for you for many years. We have had some experience with recommendations from dept heads (tho' not in hemo), and have found that sometimes the one recommended is not necessarily the best (tho' sometimes) but often the one that's new and in need of patients. So, if we can find a recommendation thru another route, we'd prefer that. That said, we may end up going the dept head route. We shall see. Meanwhile, thanks again, and best wishes.
  • Jennifer234
08 May 2023 16:59
Replied by Jennifer234 on topic ITP Doctor in Cleveland
Made an account to come tell you! All of the hematologists treat ITP but they usually are oncologists/hematologists. I am seeing Dr Kerwin (he is GREAT!) of the Cleveland Clinic and I know he has other ITP patients as well. You can always use the website and search for a doctor but you can also type in ITP in the search bar and it will bring up doctors with it as a specialty too! 

I have also been dealing with it mostly the past year as well so hit me up anytime! 
  • Jennifer234
08 May 2023 17:00
Replied by Jennifer234 on topic ITP Doctor in Cleveland
Don't be intimidated to have an oncologist/cancer center as your main place of care! The Moll Cancer Center in Fairview is where I get my ITP treatments and care :) 
  • ImPatient
09 May 2023 09:42
Replied by ImPatient on topic Nutrition and Platelets
Hi Tony,
Sorry about your diagnosis.
My last hematologist said that folate acid can help platelet counts a bit. I haven't seen a noteable change.
When I went from being vegan for 17 years to eating tuna and salmon I went from staying around 100000 with 25mg Revolade to not needing any ITP medication. Could be a coincidence that it happened at the same time. Or because of b12 and omega 3 acid... 
There was some leaf extract that was talked a lot about a while ago, I forgot what, but I had it and it didn't seem to do anything. I can't imagine anything natural helping raise platelets a lot.
  • Margaret
09 May 2023 20:55
Replied by Margaret on topic Nutrition and Platelets
Was it papaya leaf extract? I read about this somewhere and bought some, but I couldn't decide when I should try it. It might just complicate things while my haematologist is trying out medications. Currently on a diminishing dose of prednisolone and a hefty dose of mycophenolate. I'm thinking I'll try the papaya leaf when I come off the steroid. I'll certainly post if it does anything
  • JVP
11 May 2023 01:03
Thanks MoJo for the info and so glad Doptelet is working for you!

FYI - I decided to push for/try Doptelet and my Heme doc agreed, insurance approved, and start tomorrow - encouraged by your response and others in this forum - Cheers JVP
  • skyblue0219
11 May 2023 10:51
Hi, just checking on your situation. I'm 1 year and 10 months late replying on your message. I also have an 8 year old daughter who has chronic ITP and I've been homeschooling her for 3 years now. Her older sister was also homeschooled for 2 years but started going to school building last year because she is done with me and wants to socialize like other kids. They're both Covid vaccinated but yes she often brings germs and therefore my youngest gets nosebleed and we have taken her to ER several times for blood test.
  • skyblue0219
13 May 2023 13:37
Hi, I was wondering if anyone here has given this medicine to their child and if there's any adverse effect or contraindication. Thank you so much. 
  • mrsb04
15 May 2023 14:36
Count on the 5th was 23, on  the 12th it was 174.
I took my last  Fostamatinib this morning.
Be interesting to see what the result on  19th is. Into clinic on 22nd to discuss with consultant.  
  • MelA
16 May 2023 00:04
23k to 174k in a week - mrsb you really are a mystery!
Can't wait for your count on Friday - hope it is one you like!!
  • CindyL
16 May 2023 09:01
Thank you for the update, mrsb!  I've been wondering how you were.
Wow, talk about bouncing around!  Fingers crossed your count on the 19th is more in your comfort zone!
  • 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
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
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
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!

  • mrsb04
23 May 2023 04:07
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
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
197 this week 
  • CindyL
30 May 2023 07:01
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
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
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
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
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
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
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. 
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