Progression with MDS?

[choijk]

Hi All,

Everyone on this forum is wonderful. I would like to thank everyone here!! I just skimmed through most of the posts and I found a lot of helpful information.

This MDS thing has been a roller coaster. After the initial shock, I try to take each day as it comes, while thanking God for “another day.” There has been many hard days but a lot of great days too. I am looking forward to many more great days.

The more I learn and research, the more I find myself having more questions. One question I would like to ask is how fast/long does a low risk MDS progress into a high risk MDS? I know each case is different, but I can’t seem to find anything in regards to this information. My dad is currently a low risk MDS, as only his red blood cells are affected. Three doctors have found Vidaza “reasonable” but we decided to take the more conservative approach at this time with Procrit and transfusions for the meanwhile. I just hope that I am making the best decision for my dad.

Thank you again for all your advice and wealth of information! God bless!

[jga_socal]

Hey June. If they dxd RCMD then more than just his reds are affected. Your dads rcmd sounds a lot like mine. All 3 of my sc lines were low at dx, but the whites and plates floated up to normal after a few months, maybe it is the procrit halo effect?
No one can tell how long the progression will be, especially while he is on procrit. If not on procrit, or other meds, I suppose you could plot a graph of the increasing tranfusion requirements over the months and see the downward trend. But who wants to do this!? The defective stem cells have a proliferative advantage. This is the key mystery, as it is with all clonal diseases. The defective eventually push out the effective. I am also Int-1 with around 4% blasts, as of a year ago. My doctor guessed a 50% survival chance at 5 years. What is your dads age? If he is under 60, a stem cell xplant should be a possibility. If he is <60 and rcmd int-1 then the nccn mds guide says to delay a sct "until disease progression". I have an appt in Duarte next week to discuss this very subject. Delay? Or move the risk up front now with a sct? But lets face it, even with a successful sct, odds are that things will never be like they were when the stem cells were normal. Most sct survivors are destined to suffer from various severities of gvhd graft vs host disease. This might still be preferable.
Your papa is very lucky to have such an enthusiastic advocate. My 14 year old daughter and 16 year old son dont even ask me questions about my condition. Because of their age I dont fault them. But it’s for them I want to delay a sct, to perhaps see them thru the rest of high school.
Jim

[jaxem]

yeah, but you know, jga, donors are tough to come by & if you consider a double cord, you need to be down below 5% or it won’t take. i’ve heard of people over 70 getting cords & doing well w/ them. cords also have minimal gvhd impact too. once the disease progresses, then you need chemo and/or demethylating drug & the body begins to suffer & makes sct more difficult. like they say, everyone is different. Nothing easy w/ this disease.

[Neil]

Hi June,
There is an infinite number of scenarios that can describe a low risk patient. There really isn’t a means of developing a prognosis as long as he remains stable. If there are changes in his counts, if he develops blasts, and if he develops abnormal chromosomes there might be a means of having a doc hang his/her hat on a prognosis.
I will use my situation as an example. My counts were very slowly declining for a little over 6 years. BUT no symptoms outside if a slowly increasing level of fatigue. We then decided to try Procrit. NO MORE FATIGUE! It put me back to where I was at the time of my DX in 1997. Still feel pretty good after switching to Aranesp. Do not have any reason to believe my MDS is going to put me at any higher risk than my age and all the other problems associated with normal aging. I have friends my age that do not have MDS and diabetes that have more age related illness than I. There have been knee operations, hip replacements, high BP, stroke, heart attacks, degenerative disk disease, kidney failure and gout. Overall I feel better than my friends with these problems.
I like to think my glass is half full, not half empty.

[choijk]

Thank you all for taking your time to respond to my posts! I, too, see my glass 1/2 full and not empty!
Jim, my dad is 71 and will be turning 72 this May. I, on the other hand, am 27. My parents had me when my dad was 45 and my mom was 41. I guess I am a miracle child? Jim, I am sure that your children are concerned and scared right now. They are probably confused and trying to cope in their own way. But I have no doubt that they love you and want to see you healthy. I think it is great that you are being proactive and tackling this disease head on. Please continue to remain strong for your children.
In the beginning when I found out, I think I was in shock myself. My parents actually hid my dad’s condition from me up until 3 weeks ago. For the first week, I just cried my eyes out and asking God “Why us?”. But after the initial shock wore off, I started to take over the management of my dad’s health and have remained pro-active. I’m actually in limbo right now as I am awaiting for my bar results until I can finally be a licensed attorney, so I have all the time in the world right now to really learn and understand MDS. I don’t know what the future holds for my dad but all I know is, I want to do everything in my power at this time to do everything for my dad. My prayers and thoughts are with everyone on this forum. In the meanwhile, I am on a quest to find the best treatment plan for my dad. Thank you again to everyone on this forum!!!

[choijk]

Btw Jim, for some reason I thought only my dad’s red blood cells were affected. The reason I am thinking that is because only his red blood cells are low and his white blood cells and platelts remain normal. However, the doctor did indicate that my dad’s white blood cells look a little “funky” and “abnormal.” I thought that this was the reason he was dx as RCMD? But the doctor also said that he is low risk because only 1 line of cells are affected? Hmm…. I think I will need to clear this up with our doctor. Any thoughts?

[g-masews]

Choijk, I thought I’d post here to let you know our specific situation. I found this forum while I was desperately searching every avenue for information after my husbands dx more than two years ago, He also has RCMD, all lines are low, although his red cells are the best. He has complex abnormalities and is considered INT 2, but the dr. said he’d put him in the high risk catagory as his marrow is 99% hypercellular and has mpd/mds. He pushed very hard for my husband to do a SCT as he was 54 at the time. We opted not to. The dr. didn’t elect to put him on any kind of treatment, but felt he had about 12-18 mos. statistically speaking. My husbands counts haven’t changed in two years, he has not had any symptoms of the disease, gets sick less than most normal, healthy people, and we rarely even give this disease much thought anymore. Now, that is not the case with many people on this forum and one can never know what the future holds. I only write this to say that it doesn’t always move along quickly or in any set formula. I hope that two years from now I can still be writing the same things about my husband, but maybe not, which is why I read these posts all the time to be prepared. Learn all you can, but leave it in the hands of the One who controls it all anyway.

[choijk]

G-masews, thank you for your post! That is amazing!!! 2 years and no symptoms! is your husband taking any alternative medicine?

[patti]

June,

I just had a thought I wanted to share since you are just starting this journey. I was making a list of things mom and I have done naturally and was categorizing them into things that I think helped a lot and those that didn’t help as much. If there is one single thing that I would do differently if I could, it’s juicing. My MIL was only doing a beet juice liver cleanse daily and in hindsight I think she would have been better off doing a green juicing at least twice a day. Yes, it’s a lot of work. But after seeing some of the results of others and one guy on this forum where juicing brought his platelets up significantly, that is what I would recommend. Mom used a champion juicer and it was fine. I know if you do a search on this forum of juicers that there was a whole thread on what is the best juicer to buy. But if you did nothing else for your dad at all, I think juicing green veggies with a carrot or apple thrown in for sweetness at least twice a day you would see amazing things happen with his overall health – not just this disease.

My .02 for what it’s worth.

Patti

[g-masews]

He not only doesn’t do alternative anything, he doesn’t eat the healthy’ist’ either. Before all this came along, he started eating better, dumping junk food and excercising more. After diagnosis, he figured he was gonna die anyway and went back to all his old habits. Now, he doesn’t think that way anymore (thank goodness), but the old habits are still pretty much a way of life. Don’t use him as an example to follow. I just wanted you to know that there isn’t a set pattern for this disease. It progresses or not in it’s own way and time. But we would all benefit from a healthier way of living, I would bet. Good luck.

[jga_socal]

jaxem,
I’ll have to check out the cord sct option some more. I’m 200 lbs and wuz told that its diff to get enuf cords with a suitable HLA match for big people. Cord scts are usually done on people under 140lbs.
But, I’m seeing my 2nd op. doc in Duarte Thurs so I’ll put this on my long list of questions.

June,
Gad! you’re not only your Dads advocate, you have enuf to go around to others in a forum! What an angel. Thanx for the kind words. Sometimes I could swear by your posts that YOU are the one with mds! Your compassion for you dad is awesome!
If your passion extends to your work as a lawyer then I have new hope for our justice system.
Your thoughts, research and ideas are always appreciated. It would be mind boggling trying to make life-altering decisions based solely on what ones doctor says. I’m learning that what doctors say can often appear to be influenced by legal and business concerns rather than concerns for whats best for the patient.
I say, the more people talking about mds, the better.

[jaxem]

jga
you’re right about the size thing. however, almost all cord transplants being done are double cords where they match up (as close as possible) 2 cords. it’s supposed to be better than a single since the dis-similarities in the 2 cords will bolster the cells (I guess kind of like a Cane & Able thing) to become a stronger unit in the long run. doesn’t hurt to check it out. good luck to you!!

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