[josey]

I have never been much of a natural foods person. Is there a web site that explains juicing and how and what to put in it. I have never made juice in my life. I have a lot of problems with high acid foods like pineapple on my stomach. I have never been able to drink orange, grapefruit, or pineapple juice without regreting it later. The green juices shouldn’t cause the same problem. I am having the problem with the pomegranate juice, too much acid. The Cyclosporine is hard on my stomach also I think. So maybe green juices are the way to go. Joanne

[josey]

All the information was great, like you Neil I juat bruise a little easeir and don’t really have a lot of symptoms of a low platelet count. I have heard that pomegranate juice is good for you I wonder if it would work as well as eating a pomegranate. I will give both a try and let you all know if it helps. I have been very encouraged by this thread and all the posts. I hope it has encouraged other people as well. Joanne

[josey]

I am glad so many people responded to my post. I think when you are first diagnosed you feel like making out your will. Its good to know that in some cases you can still have a good QOL. I too carry hand sanitizer with me. My biggest worry is my platelet count which is running between 9 and 13. Bleeding out is pretty scary. I just have to adjust my life to compensate for the platelets. The doctors are hoping the Cyclosporine will bring those counts up. Its very encouraging to know that other people with this disease are also having a good QOL. Thanks for making my day better. Joanne

[josey]

Neil and Patti, so far my counts are not getting worse, not getting better either. As Neil said I may be one of those people whose counts just stay low, I also have no outward signs of being ill. The tx I had made me feel better, I didn’t realize how tired and short of breath I was until the tx really perked me up. Since I have had a low platelet count most of my life I too have learned to stay away from skydiving ect. Perhaps with just some common sense precautions I will do ok with low counts for a long time. Having had Aplastic Anemia, this whole thing has really freaked me out, I remember those treatment years as a nightmare. My QOL is good now, so I should probably shut up and enjoy it. Thanks for the advice. Joanne

[josey]

Suzanne, your remission was a result of the chemo and other treatments. Do you think the only way to go into remission is with chemo drugs? Was it because of the AML that they used chemo? It doesn’t seem to me that they use chemo for MDS unless it becomes AML. Is it possible to go into remission of MDS without using chemo? Have others here had that happen? I am done with the Aranesp and now he is going to start me on Epogen, I don’t understand why, the Aranesp didn’t do anything. I see now why someone referred to this as a confusing disease. Its nice to hear when someone is doing well, it gives the rest of us hope. I am really glad your treatment turned out good for you. Thanks Joanne

[josey]

My family would like to know about my long term possibilities, after reading on this forum, I realize that everyone is different and responds differently to treatment. There are no for sure answers, you just hang in there, do the best you can to help yourself, have knowledgable doctors and hope for the best. Joanne

[josey]

Hey guys, nothing in this world is a 100% safe, with our low blood counts its not safe to drive a car, my platelet count is 9, or visit your snoot nosed grandchildren, my wbc is 2.3, or try to take a walk on the beach or climb stairs, my hgb is 8.2. When you have counts like ours nothing is safe, transfusions make the world a little safer for us, but there is even risk there. I for one am willing to take the risk with a tx if it will cut down all those other risks. Just my opinion. Joanne

[josey]

Thanks all of you for some great information and advice. My doctor has said we would only use irradiated blood. I went ahead and set up a transfusion of 2 units on Thursday. I was tired of being tired, and need to get past this deniel about having MDS. I went through all of this when I had Aplastic Anemia and just didn’t want to start it again. You all gave me the wake up call, slap in the face that I needed. I will be sure my doctor keeps an eye on my iron. Joanne

[josey]

Russ, I am still pretty new to all of this. What is the EPO test you mentioned? Want to learn as much as possible. Thanks Joanne

[josey]

Alice, thank you for your advice and encouragement. I know I need to just accept that this has happened and do what needs to be done, its just hard some times. Sorry you are so far away from your mother, that must be very hard on both of you. She is very lucky to have such a loving daughter. I think once I get the first tx I will accept it as just something I have to do. I wish sometimes I had a daughter, but I was given two great sons. Its not the same as the mother/daughter bond however. I will check into that tx today. Joanne

[josey]

Marinol is also used to increse the appetite and help nausea. You might want to look into that, also Ensure, if you can tolerate the taste, has a lot of calories in it to add weight on. Joanne

[josey]

I have just one dose of Aranesp left to get. I get the shots everyother week. I havn’t seen any results yet, my count still stays around 8.4. I want to hold off with tx until it gets under 8, I seem to function ok with it under 9. Of course I am tired most of the time, but I am retired and can rest when I have to. My doctor told me it may be awhile before the results show up. My biggest worry is my platelet count which stays around 10, I was started on Cyclosporine to see if that will bring it up, before I start on any MDS drugs. Good luck with the Aranesp, just make sure they inject it slowly otherwise it really hurts. Joanne

[josey]

Thanks guys I will suggest this to my doctor, but since he is a hematologist and an oncologist I felt he should know all the tricks of getting this done, but maybe not??? Worth a try. Joanne

[josey]

bety, I noticed that about nose bleeds myself. If I get really upset and feel my blood pressure go up I get a nose bleed. Luckily they have been pretty mild, but it is something I watch out for more now. Thanks Joanne

[josey]

Thanks, I havn’t seen much improvment in my hgb counts yet. My doctor mentioned a new drug for platlets, I don’t remember which one that she thought I might be a canidate for a trial with, she was going to check into it. Its my platlets that give me the biggest problem. I can handle a hgb of 8.4 and a wbc of 2.7 without much problem. Will email her to see whats going on, she is at Oregon Health and Sciences University. Josey

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