questions

[samanda]

Where are some of the centers of excellence that some of you write about? We live in upper East Tennessee. Are there any near there? Do they just do trials? Can you get different treatments besides trials? My mom has MDS with Myleofibrosis. She has had MDS about five years. We need some hope. She is getting much worse. She hasn’t been able to get out of bed since Jan. 05. She just goes to the doctor, but she is not able to do much else. She is in severe pain. She has a lot of bone pain and pain in her shoulder. I think that the shoulder pain is from an enlarged spleen. She is taking Procrit but it makes her very sick. She was better today not as sick to her stomach. ( third day after getting Procrit) She doesn’t think she wants to take the Procrit weekly if she is sick half of the time. Are there any other medicines?
Thanks,
Amanda

[riley]

Hi Amanda,

I don’t know the answers to your questions, but here’s a link to the MDS Centers of Excellence:

https://www.mds-foundation.org/mds-centers-excellence.htm

You may also want to email the Patient Liasion on this site. Her address is:

Patientliaison@devmdsfound.org.php53-13.dfw1-2.websitetestlink.com

I just received an email from her saying that The MDS Foundation can arrange for referrals to Centers of Excellence and that the Centers accept their referrals on a preferential basis.

[Kathryn]

Hey Amanda,

my dad was on Thalidomide and it didn’t work very well for him, so the doc. put him on Vidaza for two rounds. It was a little more effective, but only for a short time. The last med. he was on was Trisenox (arsenic trioxide). Apparently it is used on elderly patients when there are no other medicinal options. He only rec’d. treatments for two weeks before he developed an infection and had to quit.

I am sorry your mom is having such a difficult time. Hopefully one of the centers will be able to help her manage her pain and her illness.

w/ best wishes,

Kathryn

[samanda]

Thank you for the information. The Patient Liason is sending me an information packet in the mail. I think Duke might the closest center. Thanks again for the help.
Amanda

[riley]

Amanda,

I’m glad the patient liasion will be able to send you some information. Has your mom ever received red blood cell transfusions rather than Procrit?

My father has MDS and is also bedridden (since February). I know how hard it is to see a parent become so dependent on others. Try to stay hopeful.

You and your mom are in my prayers. Please keep us posted on how she’s doing.

[samanda]

Hi,
I haven’t checked in with the forum for a while. My mom was hospitalized- severe dehydration, and she was low on blood. She is now getting red blood cell transfusions about every two weeks. She came home last Tuesday. I go to Mom and Dad’s and stay about 12-13 hours each day to relieve my dad some. (It’s summer time and I can do this until school starts back- I teach first grade) He gets very tired. It’s very hard to get her to eat and drink enough. We can usually get her to eat or drink about 30 ounces each day. That’s with us pushing food and liquids on her. Is that enough? She has slept a lot these last few days. Has anyone else experienced the excessive sleeping. She has Myelofibrosis in addition to the MDS and her organs are enlarged so sometimes her ammonia level gets high. She went to the hemotologist Friday, but it takes awhile to get the test for ammonia level back. Also I was reading on the internet that the test should be performed on an empty stomach. She never fasts before her test. She was better tonight-not as sleepy. I am hoping tomorrow will be better. Thanks.

[lindajo]

You might also want to get an information packet from the aa-mds foundation.Their website is http://www.aplastic.org They are a separate group and primarily provide patient education.

A center of excellance is the best idea. Second or third opinions are sometimes needed.

Make sure that she doesn’t have another health issue that can be causing her symptoms. A good internist or general practionier needs to be on your team.

I recieve a lot of pain relief from chiropractic treatments and therapeutic massage. Consulting a nutritionist is also recommended by most doctors at the centers of excellence. Nutrition is not their area of expertise so they don’t make recommendations as to diet and supplements.

I will keep you all in my prayers.

[paml]

I would seek a consult with either John Camoriano at Mayo Scottsdale, or Drs. Tefferi or Mesa in Rochester.

As I’m sure you’ve researched, myelofibrosis is a Myeloproliferative disorder(mpd). There have been a number of mds / mpd crossover patients. Some patients have characteristics of both categories. If myelofibrosis is allowed to advance, it will eventually impair blood cell production and finally bone marrow failure will occur. Dr. Camoriano’s preferred treatment for MF is Interferon. When breaks from Inf are required patients often will use Hydrea.

There is a listserv for patients and caregivers with mpd’s, you can find the signup address for this listserv at the following link,

http://www.mpdfoundation.org/thanks.htm

Joyce Niblack, (email address, JNiblack@aol.com), is one of the founders of this listserv. Joyce is probably one of the most educated laypersons on the MF subject.

Best Regards,

Pam L.

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