runningmermaid

runningmermaid's Recent CancerCompass Activity

• runningmermaid has replied to a post on the message board

  I just ran a PubMed search and found some interesting articles  Refractory Anemia with Ring Sideroblasts Associated with Marked Thrombocytosis(full length article) http://ajcp.ascpjournals.org/content/135/3/398.long Myeloproliferative neoplasms: Histopathological and molecular pathological diagnosis(abstract)  http://www.ncbi.nlm.nih.gov/pubmed/23085694 Evidence for MPL W515L/K mutations in hemopoetic ...

  November 01 at 11:52 PM view post

• runningmermaid has replied to a post on the message board

  WOW! You've done an amazing job of 'hanging in' there in spite of all of your ailments.  Have you checked out NORD, Team Inspire? There is a message board there as well.  As with all of these groups, you'll have to sign up. There don't seem to be many Myelofibrosis peeps in there but one never knows - especially with your variant, it's worth a try.  http://www.inspire.com/groups/rare-disease/ Also, ...

  November 01 at 8:57 PM view post

• runningmermaid has replied to a post on the message board

  Hello Ericavebury Have you tried starting a thread of your own? Perhaps entitled "MPN with W515L mutation" or something so it will catch the attention of anyone with your particular variation.  Best of luck to you.  Becca

  November 01 at 4:20 PM view post

• runningmermaid has replied to a post on the message board

  Hi Eric and welcome.  I've never heard of that mutation. Would you explain it please? How was it identified? My apologies for not going to read your blog first before I asked the questions - but it's late and I'm tired so I haven't been there yet - I shall endeavor to do thus tomorrow.  Welcome to our group. 

  September 15 at 2:14 AM view post

• runningmermaid has replied to a post on the message board

  Hi everyone!  Daus334 thank you for the link, I'll go look that up later and read. I do recall John has pondered this very thing.  Roger, excellent summary!  I've been taking hydroxyurea since 2006 with no worries. No side effects of any kind. It used to keep my platelet count in check right around the mid-500k range, though my platelet count is dropping now - my doc still has me take 500mg hydrea/d...

  September 14 at 3:28 PM view post

• runningmermaid has replied to a post on the message board

  Hi Oldmike Congratulations on your postive results with the Vitamic C. I'm happy to hear your MF is improving! I may consider looking into this lyposomal vitamin C thing you guys talk about. ~waves hi to Roger~  I see my onc and primary care on Tuesday. Take care Becca

  July 01 at 4:15 PM view post

• runningmermaid has replied to a post on the message board

  WOW Kristen, Bless your heart ... you just have a little bit of everything going on.  I am thankful you are working with specialists. I do recommend that you obtain and keep copies of your diagnostic tests rather than just rely on the doctor 'explaining' the results to you. Let the doc explain, and then take a copy for your records.  Thank you for explaining about the PFO - pretty interesting. Good luck ...

  June 29 at 9:11 AM view post

• runningmermaid has replied to a post on the message board

  Hi Kristen I am sorry to hear that you have had such a rough time for the past year. And this is a scary time for you with so much going on with your health. I’m sorry to hear that you lost two relatives to leukemia. This is going to be lengthy - I apologize I tend to ramble sometimes – my sons are always fussing at me :-) I have two boys, who are grown now, but I spoke to my boys like an adult when the...

  June 28 at 11:32 PM view post

• runningmermaid has replied to a post on the message board

  Hi I receive an electronic publication several times a week entitled Medscape. It had an interesting article, which I posted in the Myelofibrosis forum. I have Myelofibrosis and I am having a LOT of fatigue.  The basic gist of the article is 2000mg of ground American ginseng root has been shown to help fight fatigue in cancer patients. The American Ginseng can be found at health food stores or perhaps a 'whole ...

  June 28 at 7:42 PM view post

• runningmermaid has replied to a post on the message board

  Hello everyone I have Myelofibrosis (rare blood cancer) - this is a timely topic in my life. With Myelofibrosis, I LOOK perfectly healthy (take hydroxyurea, an old chemotherapy drug via capsule). I recently broke up with a long-term boyfriend (other issues) he once said "to LOOK at you it is hard to believe that you are so sick, but to WATCH you have to ask for help - and I KNOW how much you HATE that, then I know ...

  June 27 at 3:17 AM view post