MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

Pegasys…14 Years w/ PV & now MDS

Home Demo forums Patient Message Board Pegasys…14 Years w/ PV & now MDS

Viewing 1 post (of 1 total)
  • Author
    Posts
  • #37226
    Heidi
    Participant

    My husband of 23 years is going to begin weekly Interferon injections in September.
    He has managed the PV w/ Hydroxurea, Baby Asprin, & regular phlebotomys. The dosage of Hydrox has continued to increase over the years which led to the first marrow biopsy that revealed the MDS.

    Hello Again, Please refer to initial post below, thank you.

    1. My husband is scheduled to start weekly 90 mcg doses of Pegasys in early September. It is only available in 180 mcg dispensers. The medication cannot be preserved, therefore we must discard half of the medication each week, $500/month, into the trash. We would rather donate the money to research. I am sure we are not alone on this and perhaps should be grateful that the monthly out of pocket is not more.
    Any thoughts on contacting Genentech?

    2. Further research on Pegasys refers to use treat Hepatitis C and Liver problems with no mention of MDS.
    We trust our doctor, but this seems odd?

    On to more research…Many Thanks for your thoughts and support.

    Heidi

    Blasts – 5.3% – consistent w/ myeloid stem cell abnormality

    Myelodysplastic – level of this abnormal blood production is quite small, but there is enough to be convincing.

    $1000/month out of pocket which is painful but could be much, much more. Best case scenario the treatment will irradicate the diseases, or keep both from progressing, or he won’t be able to tolerate Pegasys, or?

    We are terrified……..

Viewing 1 post (of 1 total)

Register for an account, or login to post to our message boards. Click here.

  • You must be logged in to reply to this topic.

Login

Login

Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert