VickieGelso

Good evening! I hope you're doing well tonight. I wanted to let you know about an opportunity that you can earn $150.00 for participating in a 90 minute telephone interview with one of our partners that wants to talk to people with MDS about their experiences so far with their disease. If you are interested in speaking with them, you can click this link https://www.research.net/s/CCYXGJS to see if you would qualify for the interview.

If you have any questions please let me know.

Greg Pierce
WhatNext Community Mgr.

Vickie, I read your story and it is almost identical to mine. I was also diagnosed 3 years ago but with B Cell Lymphoma. I had Rituxan Treatments for 2 years. After the Bone Marrow Biopsy 2 months after finishing those treatments, my blast count was over 14%. Tried Vidaza,,had terrible reactions to it but had 4 courses...lowered Blast count a couple of points. Began seeing Stem Cell Transplant Doctor. She had me on Dacogen..3 rounds. I tolerated that well but only dropped one point on blasts. MY brother was a 100% match for my transplant donor and on Sept 6 of this year I had the transplant. The stem cells from my brother kinda rattled my system the first night with high fever and shaking. By the next morning I was fine. No other side effects. Two weeks after the transplant, I lost and sense of time, day of the week, people's names, etc. I was released from the Hospital on Oct 2 and it's been up hill all the way. NO problems with all of the meds, terrible taste in mouth is still lingering so eating still isn't very pleasurable.but I am regaining some of the 15 lbs I lost.
I am almost at my 100th day....which also happens to be my wife's birthday!!!! Going to be very kind to her this year....she was amazing during my care and is just the best. Wishing you a long life......

hI Vicki I'm Neil a newcomer to Whatnext, and still finding my way around the site. While we've never met it appears we have three little letters in common. I was diagnosed 2 weeks ago and still waiting to hear my IPSS score and get an insite into where I'm at.
as my Doctor's been off at a conference. I hope you don't mind me reading your experiences , but guess you wouldn't post them if you did, your a strong woman Nicki with an attitude like yours you've already won the war, its just the battles that are sucky

How are you doing, Vickie? Have you experienced what is commonly referred to as "chemo brain"? I asked my Dr & it's a real side effect in up to 10% of patients. It's hard to differentiate between the overwhelming stress & the physical toll of chemo.

Was in denial for a couple months, then the anger phase, now I'm working on the debilitating depression. Kind of getting a grip & realizing that I need to cherish every day..family, friends, animals, nature's beauty, God's gifts. I've done a lot of on-line research...dignosis, treatment, side effects, prognosis, life expectancy, "The 5 stages of grief". I am going to fight this, but it helps to know that what I feel now can change. I'm not stuck.

I've been having issues accessing this site, for days. I think I've got it figured out. Yes, the drs "wait & see" advice is probably the best approach, but so open-ended. The big unknown & frustrating as heck. It really helps to connect with you. You have gone through the whole gamut of treatment & you are still kicking. Inspiring!!

Vickie, I have been searching forever to find a chat site like this. Just need to talk to other people who are going through the same thing.

Check my profile..... I was diagnosed 2009 and I have not needed BMT or anything besides Procrit shots when HGB/HCT run below 11.

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

David
Founder, WhatNexter