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[magpie75]

Hello, I have been reading this forum for over a month now and find all the comments interesting and very supportive. I was first diagnosed with MDS back in 1994 when I was 40 years old. At the time, I had no symptoms and was told to see the Hematologist 2X yearly for checkups. So I continued that routine for the last twelve years with my blood levels staying abnormal but without symptoms.
Unfortunately within the last few months, all my counts have fallen and I now have shortness of breath, fatigue and so on due to the low red blood cell count. My platelets have also dropped from 90 6 months ago to about 20 now. I bruise very easily and am concerned about bleeding issues. At this time, I still work a full time job. My energy level is low, but I’m managing that for now.
I’ve been taking Procrit shots for 5 weeks now, but have seen no improvement. In fact the counts keep getting worse. In another two weeks, I will see the specialists at Johns Hopkins in Baltimore. I am hoping that they can give me some new treatment options.
In reading the forum I have wondered about the eating pineapple. Does it have to be fresh to help the platelet count?
I have been drinking alcohol all my adult life. I’ve read some of the posts about alcohol, but can find no real answer about the effects it has on MDS. Like others, my doctors do not give a definitive answer, but say only to drink moderately. Does anyone have thoughts on that?
Thank you for sharing your information.
Maggie

[sugarwhale]

Welcome to our Forum, Maggie!
You’ve come to the right place, and it appears that you’ve got very competent medical help. That’s a good part of the battle! I must leave many of your questions to others on this Forum more knowledgeable than I. However, I can tell you about the procrit. If the problem in your marrow is not producing enough red blood cells, then the procrit will help. However, often the marrow DOES produce enough red blood cells; the problem is that these cells don’t work right. In this case, procrit doesn’t usually help. Also, our doctor found that my mom was probably allergic to the PRESERVATIVE in the procrit injections! There are a few alternatives to Procrit that might work better, too.
My personal opinion (a non-medical one) about alcohol is…avoid it. But don’t take me too seriously; I guess I’m a bit too conservative about things like this!
Now, I’m going to leave your questions in the hands of my fellow Forum members. I just want to welcome you and tell you that I’m glad you’re one of us. Anytime I see an inquiry that I feel I CAN answer, I certainly will. One thing that would help us to help you is if we knew what sort of MDS you had. RA? RAEB? Are there chromosome abnormalities? What treatments have you had so far? Are you a candidate for a BMT?
I wish you the best, and I’m thinking of you. Again, welcome!
~~~ Janet

[jeanswear]

Welcome Maggie.
My mom has MDS which has progressed to AML. Juicing pineapple seems to help. She drinks 1/2 a pineapple with whatever pulp the juicer includes. Her platelets havent gone up, but they also stabilize when she is on it.
Also, Sugarwhale and I seem to be strong proponents of Essiak Tea. One other thing you may want to look into is Noni Juice. You can drink the juice (mixed with the pineapple) or the caps.
In regards to alcohol, mom was never a drinker so I can’t give you an opinion on that, other to say that alcohol does thin out the blood a bit. I wouldn’t reccomend it.
Ask your hemotologist about Revlimid. It should help (my non-medical opinion)

Good Luck with the battle.
Ben

[Suzanne]

Maggie, What type of MDS do you have ? As everyone knows, I heartily recommend Johns Hopkins. Without them I would not be here.It is a wonderful Center of Excellence. When you go for your first consultation, it might seem a bit unorganized and impersonal but hang in there. Once you become a patient instead of one of many consultations it becomes like part of your family. I will be wishing good things for you as far as treatment options! There have been so many wonderful new developments in treatments in the past few years that there is real hope.

[sugarwhale]

Dear Maggie,
Yes, Ben is quite right: I do certainly recommend the Essiac Tea. My mom takes Esiak Caps. She has taken them only for one month. There was a big improvement in RBC/hg. Also, our doctor also noticed improvements in other things, e.g. liver and kidney function. I’d certainly recommend it; it can’t do any harm. Our doc is a fine M.D., and HE recommends it.
Good luck! You’re in the right place here!
~~~ Janet

[Charlie G]

Hi Maggie
Was very interested to read your message. I was diagnosed with MDS in 9/05. Have had no treatment other than weekly blood tests.I have a brother who is a match for BMT. My latest blood tests; WBC 3.4, HMG12.8, P 67 are at a higher level than they were at diagnosis 3 months ago. Now I need to make a decision whether to go ahead with BMT or take a wait and see what happens attitude. Your long period from diagnosis to present is encouraging. Would like to know your type MDS and original blood levels and blasts. Best of luck to you in the future.

[Jim]

Maggie,
About alcohol, my doc says stay away from it. I’d have an occasional glass of wine until an experience I had last month. I had a glass for dinner the night before a blood test the next morning. The results of the test were off-Hgb was down, WBC up and Platlets down. The doc decided to retest in a week. The results of the new test were more consistant with previous data. I never said a thing about the glass of wine–LOL. Not very scientific data, so far a one time occurance, so take it for what it’s worth.

[Suzanne]

My Docs told me alcohol Ok in moderation even during drug trials and after chemo

[magpie75]

Thank you to all of you who have responded to my post. I will continue the Procrit for several more weeks to see if it will help, but I will also try the Esiak tea you have recommended. It sounds promising.

I don’t really know how to type the MDS I have. My current hematologist says it is IPSS/Intermediate-1 MDS. I’m not sure what that means. Does anyone know what that means. My doc also says I’m not a candidate for Revlimid, because I do not have 5q-karyotype. I still have lots of research to do.

Suzanne thanks for your info. about Johns Hopkins. I will be seeing Dr. Gore. Is that who you saw there? Hopefully they will tell me exactly what type of MDS I have.

Charlie G. I don’t know what to tell you about the BMT. You have to make that choice. I am ready to get one now if that is an option. But I had twelve wonderful years where the disease did not alter my life at all. When first diagnosed by counts were HGB 11.9/platelets between 90 & 135. The numbers were usually in the low-normal range. In my doctors notes they called it a mild MDS and only recommended monitoring until it should take a turn for the worse. I’m glad I waited. But one thing of importance is that Doctors don’t like to do BMT after a certain age, so you have to go for it while you can. I am now 52 so think I will be eligible. If you wait, then you may reach an age where the doctors will no longer be willing to perform the BMT.
Looking forward to talking with you all again.
Thanks,
Maggie

[Suzanne]

I know Dr. Gore. He was the first to suggest I try the Zarnestra trial when he saw me on rounds in the hospital. The nurses etc say he is brilliant. I have also heard him talk to a group of newly diagnosed MDS patients and their families in a presentation on the disease and recent developments in treatments sponsored by this group and the Leukemia Society. He explains the disease and treatments very well. He doesn’t always come across as a warm person-sometimes sort of flip.He is envolved in a lot of trials and research and is very well known for being an expert on MDS. I have stayed in touch with one of his patients that had secondary MDS after breast cancer-a real tough one to treat. She is in remission after chemo and so far has stayed there. I think you are in very good hands. My guess is that you will have a prelininary appointment with blood tests, then they will set up appointments to do their own tests-probably a bone marrow biopsy. And will see you again in a few weeks with those reults, including the type of MDS you have and their recommendations for any treatment alternatives. Almost everything is done right in the clinic rather then the main hospital and the fascilities are wonderful.

I think the IPSS is a reference to one of the risk scoring methods used with MDS. International Prognostic Scoring System. They factor in your age and test results. There are worse scores then the intermediate 1. Good luck. and keep in touch as you learn more. I still go to Hopkins for blood tests and Bone marrow tests but not as often now.

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