[Chris Ballmer]

Michael – City of Hope in LA put my name into their global database, and my brother is a half match. I’m not doing it because it would be too risk, for the need. It’s like cutting off your finger because you pricked it with a rusty nail… you’d try some lower risk things first… but if it got gangrene and infected then that may be the only way to save your life, etc… Procrit to boost RBCs, my Kaiser Onc prescribed as normal protocol to boost red blood cells because they are low and getting more oxygen to my brain is a good thing…expecially for my old brain! 😉

[Chris Ballmer]

My thoughts: Find the best damn doctors including Naturopathic Oncologists, and work them out. Ask as many questions as you can. Do what you can, then go live and enjoy every day, since that’s all you got wether you have any disease or not…

[Chris Ballmer]

Joseph – Thank you for opening up about your journey and father. You’re a deep thinker man, wise and a big heart. You are both lucky to have eachother. It made me see that by changing one thing in your body, you effect everything else. Reminds me to keep all my practitioners in the loop, it’s my life, and professionals often make mistakes in their jobs…i know i do. So, communication and information sharing, key to do. I’m taking supplements which are affecting the same blood chemistry as the procrit and vidaza and chemo therapies… so, why shouldn’t ‘western’ and ‘alternative’ medicine both talk with eachother? It’s our responsiblity to make the integrative medicine paradigm work now for us… while the business/government systems catch up. Our resources are out there… we need to be the proactive ones now and always. Just sayin.

[Chris Ballmer]

I’m 51. I wouldn’t jump right in to a transaplant if i could put my two cents in (you’ll have to qualify first anyways). Are you on anything now?, trying some lower power drugs first may or may not buy you some time. Have a list of questions for the professionals, and consider alternative ways to elongate your lifespan. I’m using a operator-moderated mixture of conventional and alternative treatments… Nutrition changes/improvements are possible and may also give your body more resilience in case you need to start on a chemo based regimen. Just saying.

[Chris Ballmer]

I signed up for a list group and they thought I qualified for a nipple surgery recovery program…

https://www.researchmatch.org/login/

Beware of what you sign up for, do your homework.

[Chris Ballmer]

I smoke occasionally, have low risk MDS, and feel light effects of anemia and fatigue only. About a month ago, after smoking THC, I felt like I was in a room with almost no oxygen, I felt so scared I asked my wife to watch me and get ready to call an ambulance (no, I was not paranoid, in fact the cannabis was a very weak strain). I believe that with low red blood cells, and anemia, the physical effects of 1)smoking a combusted material and 2)smoking THC and the heart-rate effects could make for a temporary overwhelming lack of oxygen, possibly causing passing out, or worse? Not to scare anyone, but I suggest if you want to dabble, dabble in liquid or food forms of CBD of cannabis first or only. If you want to enjoy THC, also , go for edibles maybe. Otherwise, be careful if you’re a smoker, weed or tobacco.

[Chris Ballmer]

My doctor seemed to think an oxygen concentrator wouldn’t add much to the breathing experience.

[Chris Ballmer]

My take is that without more healthy red blood cells (which we have Epo and others) for, more oxygen will probably be wasted. Just because it’s not been done or is not something announced or coming up a lot on the websites about MDS doesn’t mean it couldn’t help. I guess I’m not there yet. My brother has sleep apnea, and he uses an oxygen concentrator every night to keep him from passing out, so I guess there is some use for forcing Oxygen when it’s not getting in. However, logically he has good red blood cells and needs oxygen because he’s choking out the air getting in his mouth. We have oxygen coming in, but at the red blood cell there is no transfer of that good oxygen to be used in our muscles, organs, brain, etc. The broken red blood cells need to be corrected, eliminated, and regularly functioning ones introduced. I don’t suspect this is rocket science, though how DNA and our bodies work is a bit of a mystery to mankind… not unresearched… but if we know more and more, we can then invent a fix…a way for our intelligent body to help itself, rather than short out and fail. We’re trying.

[Chris Ballmer]

I appreciate this question Angela. This forum should be able to talk about the real issues of this disease if it is to be helpful to people fighting for their life and quality of life.

I have MDf DX since December 2017. I am feeling very little symptoms, but very stressed. As is my spouse.

I am worried that though I will be taking drugs, and chemotherapy and possible SCT, I will be slowly dying. Does anyone want to share what the symptoms do as they become more and more and how does it finally take a life? I understand it to be secondary effects, like pneumonia or others.

I couldn’t see getting through this without someone who can commit to a long term care program, and even more so, someone that loved me.

[Chris Ballmer]

Thanks Sherry. Did knowing more about your DNA help in your case? Makes sense about wiping out the DNA with a transplant. I would do anything, however, if it gave more insight into how to treat, cure.

In your experience, does using an outside “Center of Excellence” help, and how are they covered or not by insurance, if my primary service (Kaiser Permanente) is already caring for me.

Chris

[Chris Ballmer]

Allan:

Joint pain. Here’s my guess. Not a doctor. Just more common sense. We have less, and not as ‘working’ cells and other vital components of blood. You can’t change one thing in the body without affecting everything else. I was surfing this weekend, and when I came back my knee was aching. I didn’t recall doing anything weird to it…but I had an older injury which never really surfaced until yesterday. I imagine our blood does more than just bring food and air to the rest of our bodies, it acts in other ways which are not obvious. Having less of this vital liquid streaming through our bodies, I can see, could cause joint pain in people, not everyone. But if it’s affecting you, then there you go. I’m backing off lots on some of the more ‘dangerous’ sports I’ve usually done, since the risk benefit doesn’t make sense anymore.

[Chris Ballmer]

Thanks Allan.

Hey just to ask, have you come across any benefit from using O2, for anemia, to help alleviate the suffocation effect. I am trying to figure out if buying a pilots oxygen tank and using it when I feel faint will help… or is it something to do with inability of red blood cells to use ANY amount of oxygen in the air? maybe I’ll post it here as a topic…

Carpe diem.

[Chris Ballmer]

I’m in a similar holding pattern. Initial diagnosis multiple low blood/platelet counts… then MDS through bone marrow biopsy. I’m 50 years old. My doc has OKed a prescription of both Procrit and Vidaza for boosting blood cell counts… but I am holding off until symptoms increase.

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