merry

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.

Hi Merry, They tell me the trick is to eat more often but a lot less The idea being like feeding a fire kindling not logs, makes sense but not really into eating so only being havin 1 meal a day which is a bit silly. Hope you had a good day . Only one more day of work then off to Auckland to see my daughter for the weekend so really looking forward to that.

Hi Merry sorry about that I miss read an email on your wall and thought it was your hubby. Either way hope all is going well. Got a call from the Doc yesterday asking me to pop in! when passing. Thought Oh Sh#@ what now??? turns out I'm deemed Fat that's all and she wan't me to loss 20kgs. Hell yer I'd love to loss it to, but each morning in the shower its seems its found my waste again! Dam LOL.

Hi Merry, how ya doing! That hubby looking after you? lot of treats is alway good LOL

Hi Merry, By W&W I mean watch and wait basically the doc's take blood every qty and monitor any changes, (which hopefully won't change for a long long time ) The IPSS score I found this being quoted often when surfing the web .My basic understanding is that the score relates to each area of the blood cells and any +/- found is them which provides the score and while we're all different the score gives a snap shot on the stage of the decease. There's a site MDS in adults update I found on Goggle that you may find interesting, it explains the score in better detail than I could (heaps of big words! lol) Hope its helpful.

Hi Merry, Sorry had someone arrive at the door trying to sell pictures didn't get to wish you well tomorrow with the Doc.

Hi Merry, had issues getting on this site. I think it was operator error on my part, ha. Funny that your daughter's name is Deanne. I hadn't heard of Procrit before. When I was finally diagnosed, last January, the hematologist & some sort of social worker came in with the room with a folder about chemotherapy. I asked if I had cancer. They were so vague with any information. He said "It's not cancer, per se". Now what the heck does that mean? I was overwhelmed, so I didn't ask. Did a lot of research & with each appt I asked more questions.

I had the bone marrow test & that's how they finally found what was going on. They didn't knock me out, just local. After 2 dry taps, she hit it. It did hurt. I got 2 pain pills from my hemotologist prior to the procedure. Next time, I will ask for something stronger. I don't to be knocked out because that has a whole different risk factor.

Merry, I just found this site. Need to talk with other people who have mds.

Hi Merry...good to hear of someone having mds and not needing bmt...I in early diagnosis had procrit injections too, would help for about one week, then hgb would drop again...but they sound very successful for you! Hooray! I will follow you if you don't mind and your journey. I have been a member for a while, but wasn't ready to read other posts, or post my own till now...I hope I can help others, from what I went through, if they are facing the same. Have a great day!

Hi Merry, I had to have a bone marrow transplant, bmt, cause the chemo didn't help me. It was so dissapointing after being miserable from the chemo. Then it lead to Leukemia, had more intense chemo and radiation then the bmt. I have a new birthday now that I had a bmt 8 months ago. So I'm eight months old now. I told my husband since I had a birthday maybe I should get a present. He bought me a birthstone ring for August, peridot. How nice was that. I got two presents, ring and life. I feel great to be out of hospital and enjoying my life as much as I can. I went to my sons lacrosse game today. It was a nice sunny day. Loved it. It is hard when people don't realize what you still are going through and how much effort it takes to do things. Hang in there and I'll talk to you again I'm sure.

"I am in GA. My kids are here, but they don't realize the gravity of my MDS. I have a daughter 25 and a son, 21. I am not to the point of BMT or chemo yet (hopefully it will stay that way".I hope so too Merry! Your kids should be more aware of the gravity of the situation though. I hope they have been doing their research so they can have a full grasp on how complicated of a disease MDS is and how quickly it can lead to AML. I am an only child, never had a father and I am my mom's sole caretaker. We have no one else. You have 2 kids. I wish everyday that I had more help. I wish you the best and I hope that your kids will be there for you when it matters most. When you need them just as they needed you. It goes full circle in life I believe. We would not be here if it weren't for our moms. I wish you the best on your journey. We have quite a long one ahead of us.

Thank you Merry, it's people like you that help me keep it together. MDS patients get overlooked so often. So are you blood levels staying at some kind of (acceptable)??? levels? I go every other week for two units of blood, levels are low. wbc=2.8 red about 9.5 platelets around 50. Hope yours are better. Keep in touch.

Hi Merry,
I had the same experience one week after chemo.My white blood counts were so low I had to be in the hospital for seven weeks. wbc was .5,rbc was 2.93,platelets were 14. It was a miracle that I made it out of there alive. Yes, I also got neuropathy in my left arm and hand, and my right knee and foot.NO ONE, NOT NOBODY,the oncologist,or the neurosurgeons and neurologists will rat on each other. Nobody will say if it was the chemo or the massive doses of broad spectrum antibiotics.
It is now 7 months later, I'm off the walker, regained use of my arm and hand, but right leg is really weak. I can walk normally, but not very far. Also very short of breath. Latest I heard is that they want me to try a lower dosage of chemo. I am scared to death to try that again. I think that I will just live out what life I have left and enjoy it the best that I can. Question for you- If you had been through my experience, would you give chemo another try? Please be honest with me. I now get 2 units of blood every two weeks, and kinda holding low blood levels at an even rate.

Hi Merry,
MDS myelodisplastic syndrome is now listed in the diagnoses page. You can change your type of cancer to MDS now, you will have to enter Meylodisplastic syndrome to find it instead of just MDS.
Let me know if you need help. To change, click the diagnosis link under your profile picture, then search for Myelodisplastic synedrome, and change it.

Hi Merry, Do you not need a BMT? Also what are you doing to help with low energy? I'm always tired too. I tell everyone "tired" is my middle name.

Hi Merry, I just got through talking with our tech dept. We will have MDS added to the dx list in the next couple of weeks. These things have to be added when A new release is rolled out, and the next one will happen in the next couple of weeks.
Thanks for your patience!

Hello and welcome, we are glad you found us. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, any questions you may have just post them in the questions tab and everyone will see them there and be able to help you.

https://www.whatnext.com/conditions/cancer/leukemia

There are also subtypes listed on this page to narrow down the type of cancer to match your dx.

Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall.

Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also. Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

Greg P
3x survivor
Team WhatNext

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Team WhatNext