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Jun 24, 2012 · Myelofibrosis in Blood Cancers & Disorders

Hello Cathy.
Sorry to hear of your husbands’s diagnosis. I was diagnosed 11 months ago and it’s been a roller coaster ride. Some good days, then bad days. I took hydroxurea for a while due to an enlarged spleen, but it didn’t help so last October I had a splenectomy. Then in February of this year I went to the Mayo Clinic in Minnesota. I saw Dr. Tefferi. I really liked him, and he was encouraging. He put me on an oral chemo (Revlimid). It brought all my blood counts down, which was expected. My local doctor had to take me off due to the white cell count getting too low. I took the chemo for 28 days (5 mg) and I’ve been off for 7 weeks. My counts had started coming up, but last week the platelets went back down. So, with all that being said, I’ve decided to try an alternative treatment, hopefully in early July. Rather than me try to explain this treatment, I’ll give you several word to google and a website to go check. I’m skeptical, but I’ve got to try it. Here’s the website and words:
Healingcreatively.com
Biophotons
Johan Boswinkel
I’ll be going to California to get this treatmen, and I’ll let you know what happens.
I’ll also be praying for your husband and you.
You can reach me at jofinlay44@gmail.com if you like.
God bless.
John

Dec 29, 2011 · Lodging for Mayo Clinic Rochester MN in Visiting Mayo Clinic

Yes, my you have great weather! I go there February 20 to see Dr. Tefferi due to a rare form of leukemia I was diagnosed with in July. I had a few phone conversations with different people in Rochester and they all tell me to be sure and bring warm clothes. I think they can tell I’m from the South ????.

Dec 29, 2011 · Myelofibrosis treatments in Just Want to Talk

Hey Bjiou. Are you okay? Haven’t heard from you in a while. Did you get my phone number in the email? Just wondering.
John

Dec 28, 2011 · I have recently been diagnosed (July 28, 2011) with myelofibrosis, a rare in Just Want to Talk

I have recently been diagnosed (July 28, 2011) with myelofibrosis, a rare form of leukemia. I’m scheduled to see Dr. Tefferi at the Mayo Clinic in Minnesota in February. I’m trying to find out if there is a medication that will relieve some of the bone pain associated with this leukemia. My insurance will not pay for the new drug Jakafi ($7000 per month). All comments welcomed. John

Dec 28, 2011 · Lodging for Mayo Clinic Rochester MN in Visiting Mayo Clinic

The Kahler Grand Hotel is right by Mayo Clinic, and they have rooms for $95 per night. They also have an underground walkway to the Mayo. It’s my understanding this is one of the older hotels in the area and could use some remodeling. It’s clean, neat, etc. The Hampton Inn is about two miles away with rooms for $94 per night. They have free shuttle service to and from the Mayo that starts at 6:30 am. Praying your husband’s surgery goes well.

Dec 17, 2011 · Myelofibrosis w/ JAK2 mutation in Blood Cancers & Disorders

Was informed today from Incyte that Jakafi is for all myelofibrosis patients, with and without JAK2 mutation.

Dec 14, 2011 · Essential Thrombocythemia in Blood Cancers & Disorders

Thank you, Tessa, for your reply and your prayer for me. I’m forever appreciative and thankful. And I will let you (and others) know what they tell me and of treatments options we choose. Thank you again, and may God bless you.

Dec 11, 2011 · Essential Thrombocythemia in Blood Cancers & Disorders

I was diagnosed with ET seven years ago. I took anagrelide for the entire time, which kept my platelets in the normal range. About six months ago my red blood cells went down slightly so my doctor stopped the anagrelide. My platelet count stayed normal but reds continued down. I now have myelofibrosis, a rare form of leukemia. I’m scheduled to see Dr. Tefferi at the Mayo Clinic in Minnesota in February. All comments and prayers welcomed.