new patient

[Anneg]

Hi All,
Need some infor. on the path that I am going to be on. Was diag., with MDS about a week ago. Starting Vidaza on the 9th. Have been told that without a transplant I have about 2 years at the most. I have fought Breast Cancer twice, since 2003, thought I would be ok. Now this from Chemo and rad. Have not been connected with transplant clinic yet. Doc. says its going to be hard due to the fact I have only Medicare/medicaid, due to disablity. . either Miami or Tampa. Where do I go from here. Don’t want to die. It sucks that Insurance determines life or death. Don’t know what to do. Do i do the Vidaza to possible survive up to 2 years or just wait for the good lord to take me. Cant even afford a funneral PLEASE HELP

[Mary4Mike]

Anne,
With MDS it is hard to base your treatment decision on the success or not of other patients. Everyone responds differently. If the only option you have right now is Vidaza, personally, I would give it a try. It helped my husband for 15 months. I don’t have any information to offer about transplant without insurance. I know that transplant is very expensive, not to mention all the testing that has to be done before and after, and the medications that are needed after transplant. In the meantime, give Vidaza a try. You can always go off it if you have major side effects. My husband had no side effects from it. Just remember that it can take up to 6 cycles to see results.

All the best to you and let us know what is happening with you.

[Anneg]

Hi Mary,
Thank you for the info as well as the response. Ive never been a quiter and really don’t want to start now, so again thank you and my god bless you and your husband

[bobweinberg]

Anne, the Vidaza is definitely worth taking, but all patients need to educate themselves. Have you read-up on MDS? Do you know your blast count or chromosome abnormalities? You can obtain good materials on this website. Also, Audrey or Dee, as Patient Liaisons at the MDS Foundation talk with new patients all the time (the 800 telephone number is on the home page). Are you satisfied with your doctor, because they can also refer you to an MDS center of excellence where the doctors are really familiar with the disease. Stay optomistic and learn all you can.

[Anneg]

Hi Bob
Know I don’t know my blood counts yet. Doc went on vacation or Christmas. He just got back. Have had procrit shot before christmas, did not work. was in yesturday for blood work still very low on all counts i was told. Will get all info on blood hopefully on Monday when I start the Vidaza. He gave me a aranesp shot to see if that helps. Trying to keep me from infusion. Yes I am happy with Doctor he saved my life about a year ago. Bacterial pnemonia also radiation has destored my balance system. Still don’t know about BMT due to Medicare/Medicaid. But have found that because it’s related to my Breast Cancer it should cover some. but still very lost and confused.

[lindajo]

I have lived the past 21 years with MDS. Each case is different but don’t assume that a transplant is your only option. I had numerous transfusions in the beginning but it has now been two years since my last.

Be sure and change your diet to a healthy one. Lots of fresh fruits and vegetables. Eliminate fried foods, go with baked broiled or steamed. Give your body ever chance to heal itself. There are a lot of treatment options now. Procrit, Vidaza and other clinical trials may work for you. Don’t give up.

[Anneg]

Thank you for the support and god bless

[Anneg]

One treatment left for first round of vidaza. Blood Counts down Yesturday if first treatment would not have done. this morning really dizzy, leg cramps and having hard time breathing. Night sweat too. this really sucks. Anyone have any suggestions? Really need to bring my moods up. Trying to stop smoking on top of all this I feel like I.m a failure. Have other medical issues. Main one being I have no balance system so I am on a Merry go Round 24 7. and treatment just makes it worse. Wanna be a nana but just can’t it really sucks. thanks for letting me vent. everyone have a great day and god bless

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