BMB is next for me!

Getting bone marrow biopsy next week (have had a few in the past) to see what's up with my platelets, genes, and white blood count. Could mean a switch from Jakafi to a drug in trials for my MF. Bruising and slow coagulation is a factor, but feel good and have great new doc: Catriona Jamison at UC San Diego in the USA. She's quite the scientist. I just hope our dear Claire Harrison thinks she's good too :)

25 Replies

oldestnewest
  • What is your diagnosis. My daughter is 15 and has Polycythemia Vera. She had the BMB twice she is Jak2 +, any Specialist you can recommend once she becomes an adult? She is currently seeing a Hematology/Oncologist at Children's Hospital. ...

  • primary myelofibrosis. But I am 65! question: would you or your daughter ever talk about this in a child in an blog or Skype interview? It could help others.

  • Yes of course, I want to get advice and know about other children that are living with PV

  • Sunflower81,

    I work with Andrew Schorr at Patient Power. We are working to find you some information for your daughter. Email me at sheryl@patientpower.info. I would like to learn more about you and your daughter. Thanks!

  • ok drop an email to sheryl@patientpower.info and she can coordinate you and your daughter telling your story maybe in a blog and then seeking a connection with others affected at an early age.

  • GOOD LUCK ANDREW, AND WITH NEW DRUG SHOULD YOU OPT THAT WAY. CHEERS CHRIS

  • Thanks!

  • Hi Chris - good to hear from you - my first week back at work and so far so good. Hope all goes well with you and wishing you the very best, Sue xx

  • Wishing you good luck with the BMB . Hope it all goes well, let us all know how you get on Lizx

  • Thanks!

  • Best wishes, hope all goes well

    Lizzie

  • Thanks!

  • All the best Andrew with all that is happening with you - you have helped so many of us with all your hard work providing information that opens up so much more understanding and encouragement for us - so now it's your turn to get some support from all of us!!

  • Thanks!

  • Good luck with the BMB Andrew! At this point you should be a pro in getting them. Wishing you good luck with the results!

  • Thanks!

  • Fingers crossed for the best possible outcome...

  • Good luck Andrew. Let us know how you get on. X

  • good luck let us know how it goes---jean

  • Hi - hope all goes well for you, take care, Sue

  • What was the reason for a new Dr? I thought you saw Dr V in Houston.

    I have Myelofibrosis since 2006 was taking Hydroxyurea until 2008 when I had pain from swollen spleen .

    My Dr sent me to MDAnderson in Houston. I was in the jakafi trial phase 2 from 2008-2012 , Jan when I was told the drug was approved.

    Two months after my last visit Jan 2012 I had my first blood transfusion. I had transfusions every 4 months about 2 years. I was but on Arenesp 200,later increased to 500 shots every month Until 2015. I was taken off the Arenesp as it wasn't helping prolong transfusions.confirmed by lab test.

    I have low rbh every 4 wks must get a transfusion.having arthritis now don't know if this is a side effect of jakafi, or Exjade. I was prescribed Exjade a year ago as my iron counts were 1600. My iron is down to 800 now,still taking Exjade.

    I have never been hospitalized,or had any health problems except sinus headache my entire life. I am 73 was 62 when diagnosed having lost lots of weight,loss of appetite,pain in my left side,night sweets.

    My question to you is ,how can I contact the research nurse or Dr V ( he was my Dr ) ? I would consider another trial if one is available as my Dr says no meds to help me. I looked at the website about the trials,but don 't know how to chose,would like for my oncology Dr here to speak to Dr V. She said she would get me an appointment ,or would talk to him if he calls her.

    I regret but haven't spoken to anyone at MDA since I left in Jan 2012.

    I don't have a support system here,never joined a support group until this wk online. I was feeling great all these yrs bowling,gardening until August 2015 .

    I watch the MPN meetings videos

    I did hear on one video they have meds to help with anemia,low platelet count.

    My dr visit last wk dr said she doesn't know of any must be in trial.

    I was on jakafi 20 mg am,20 mg pm per day since I left MDA in 2012 until last wk dr reduced the dose to 20 mg per day hoping to increase my platelets.

    I feel I need to move quickly since my jakafi was reduced.

    Is there a way I can speak ,or email dr's in MDA to know if there is a trial for me.

    Since flights are costly I hate to fly to Houston to learn there aren't any trials for me. I go alone; now having a problem walking arthritis in my knees had 2 shots now.

    Thanks for any info you can give me

    cbowler in SC

  • email me your name, city and phone and email and I will pass on to Dr V. I know he'll respond. I have moved to San Diego so Dr Jamison will be my local doc but I will always consult with Dr V too. Just need a top local person, esp if I get sick. my email is andrew@patientpower.info

  • Wishing you good results with th BMB . I hate those test more than any.

    Prayers for you

  • Good luck. I have an appointment in Paris with prof Kiladjean in feb for the same thing, I hope to be included in his trials. let us know how you get on. And happy new year too!

  • I am in a similar situation. Do you know what trial drug might be offered to you?

    Thank you

You may also like...