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Chris Ballmer
ParticipantHi Sheri – I went straight to supplements and diet changes, which helped clean me out a bit. However, my blood counts have been steadily getting lower and lower, and I’m slated for a SCT, so I would probably suggest to both improve your overall health by eating whole foods, trying some Naturopathic Oncology, but also expect that you will need chemo to eradicate the cancerous cells. IMHO. Chemo sucks, but so does cancer… ugh.
Participanti’m on my 5th round, Vidaza seems good though not much change in actual counts, i’m hoping for R W and Plate to go up of course, soon here. But no side effects to note for me…I do take zophran which give const. but i eat prunes and Milk of Magnesia and it helps in a pinch.
ParticipantI’ve had 3 months, 3 days each round. My only symptom is a hurting fat around my belly button… because of the shot. Other than that no change, and hoping for it to help my counts go up… should start seeing that soon… Hope that inspires you.
ParticipantKen –
I hear you man. We are thinking of our loved ones especially the children, and that’s the right way. I hope you find your match, even if partial, and that you get well… we don’t have much of a choice other than to let it degrade, and i’m not in the place where i want to sit around and wait to die personally, but that’s just me… but it’s going to be on my terms as much as possible. Keep us posted, maybe someone else will have ideas for you…
chris
ParticipantKen – What criteria do your docs look for to do your BMT? Is it lack of donors? There is Anthony Nolan, and other non-profits who have their own donor databanks, maybe you can research others like that, who may help you get hooked up.?
ParticipantHi Canuck – I’m in the system for donor, but only after a scare that they lost my labs… actually what happened was it wasn’t input into the system as of the time i called the Transplant team… in other words I called BEFORE the lab was even entered into the computer, not sure how I beat them, but I’m glad i didn’t have to redo my labs (for the 2nd HLA typing match test). I find the more you call and follow up, the more they will remember your name. Be kind and all, but be persistent. It’s why they are there anyway, i am their job security!! lol Your BMB was botched?!! So, yeah, there’s a delay of another week or three… and with this shit we don’t have weeks to burn. I’d be pissed. This disease doesn’t spontaneously stop let’s say.. so you have to stay aggressive with your team. You’ll catch up to the lingo as you go along; I find that the Doctors do know what is going on and what works, so I go with that, they will even suggest Trials, which is all part of the state of art medicine which you need to take advantage of. We’re gonna kick this ok, stay positive and live every day in the NOW.
ParticipantI’m 51 and about 5% blasts. Been through 1 round of Vidaza, and going this week for my second. It shouldn’t take that long for them to prescribe it for you, but I don’t know what other things are in your blood. My California insurance was great to keep the ball rolling BUT BUT BUT you NEED to be a SQUEAKY WHEEL. Do not assume anything is in the works, or that someone didn’t lose your paperwork. I would call every day until you get what you feel is the best care for yourself. Leave nothing to chance. Nothing. Assume you are lost in the system, what would you do then and find out too late? You are your only advocate pretend. OK. Do it. Do it now. Get your doner lined up ASAP… that takes a while too, but keep calling them too.
You will totally survive a BMT… You just need to get all your ducks in a row. What are you waiting for?
ParticipantRose – I’m in a position of very possibly needing/getting a SCT. May be a year but it will happen. I’m reading your post and very interested and rooting for your family. My wife will be my caregiver. Hang in there and enjoy every day of life, it truly is the most precious thing. Chris
March 28, 2019 at 6:27 pm in reply to: Low risk MDS patients who opt for no medical/drug treatments #46386ParticipantRAR –
Quoting you below… Have you had a SCT? When you say MDS free what does that mean exactly? I’m looking for a donor with City of Hope/Be the Match, but still intermediate risk but with blasts actually increasing slowly, just starting Vidaza, so prolly buying some time?
chris
With low risk MDS you stand to live longer on average with wait and watch. With high risk you have an edge with transplant. When diagnosed I had MDS so mild I would never need treatment. 2 months later my ANC was .1, blasts 13%, other blood counts critically low. I am still alive and MDS free 4 years later. My initial odds when MDS flared were 4% to live 3 years.
Ray
ParticipantHi back Richard: feel free to call me 805 448-8278 any time.
ParticipantHi Richard:
Wow, you have your work cut out for you. You can do this man! I’m 51 and my kids are grown and gone, but kids are resilient and the legacy you give to him will carry him so be strong for him. He probably won’t realize a lot of the details, other than he will remember how you showed him love. Maybe start looking for other ‘family’ and better alternatives than public agencies too. I’ve been learning that being healthy, eating pure food, meat, salads, supplements is all helping me both physically be resilient and mentally stronger to do what needs to be done at home. I’m also looking for a donor, as I’m intermediate and blast count rising (for now). I’m resigned that this MDS doesn’t really remiss. I’m going to give it a good run though, but live each day best I can, and not be consumed with medical issues. I tried but realize that our western medicine, cancer research, is the best we have right now, and use whatever you can and be aggressive with doctors. I don’t believe nutrition will heal this cancer, and I tried, and my counts are going down. But that’s me. Good luck with whatever you decide, and stay strong for the prodigy… every day is precious. If you want to pm me, i’d be happy to talk with you.
ParticipantEric – What’s going on with your doctor? Are they MDS experienced? If I were you I’d find someone who specializes in MDS or at least has treated as many MDS patients as possible. Their experience will be invaluable to track you, and to give better input rather than just ‘my numbers went down to 10 and so I went on a different drug’. Nothing is in a vacuum, and with less experienced oncologists you will possibly miss something important. So… Your life. Your responsibility to get as many opinions as you can ‘afford’… unless you can afford NOT to have the best care?
ParticipantI don’t exercise.
I don’t try to ‘maintain energy’ I don’t believe it works for me, though it may work for other folks, different metabolism etc. I try not to think about it too much, being too obsessive about my body reminds me of my progression, I’d rather spend my time thinking about things that I always did before, live my best life regardless of energy… so far its been working for me.
ParticipantYeah, depends on the situation. In my BMB the doctor is really gentle, but the two supporting nurses are distracting, talking… You can take charge and tell them how you want it done, sedation or not… if you don’t get to choose that sucks. They are there for you remember. There should always be very good communication, don’t trust whatever they do, make sure you understand what and how things are working… that’s why they have to write the side they are taking out shoulders with a pen… medical professionals make mistakes, but only occasionally, you just don’t want it to be on you, and you can be the squeaky wheel… it’s our body after all.
ParticipantHi Janice: this is probably not the final solution to your itching, but when I cut out sugar and a high carbohydrate diet (bread, pasta, etc) I found that my itching goes way way down… everytime I have cake, pie, cookies or icecream or anything processed, I itch real bad. Maybe try it. Hope it helps. I’ve got MDS too and have fatigue and low blood across the board…
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