Forum Replies Created
-
AuthorPosts
-
Mary4MikeParticipant
Welcome!
once thing you will learn with this disease is that everyone is different! Everyone has a different response to the different treatments. You are young which is in your favor. Have they mentioned transplant to you? Why are you boycotting treatment?Mary4MikeParticipantBob,
I am sorry to read about the change in your health status. Please keep us posted as you feel able.We, too, believe that there is no alternative to hope. When it comes down to it, that is really all there is. I don’t know what your hope is in, but we gave our situation over to the Lord. He gave Mike healing.
You are in my thoughts and prayers.
Mary4MikeParticipantI would give Arnica Montana a try. It is homeopathic. You take it orally and they make a topical. You can use both and they are found at health food stores.
You may want to run it by the doctor, and if you are fortunate enough to have a doctor that knows about alternatives, I hope they give it a thumbs up.
Let me know!
Mary4MikeParticipantAnne,
My husband is doing very well. He had an easy time of it with his transplant experience. He was released 12 days after transplant and has done well this past 3 years. He had MDS for 10 years or so prior to transplant and received over 140 units of packed red blood cells (PRBC or transfusions TX ). Because of this, he has a lot of iron and has been doing monthly phlebotomies for the past 2 1/2 years. This has been the main issue that we are dealing with now. Thank God, it doesn’t interfere with how he feels.
I have no idea where your faith lies, and I am not trying to push anything on you, but my sister smoked for over 30 years – extremely heavy smoker at that. She tried the gum, patches, and hypnosis. Nothing worked. She finally handed it over to the Lord as it was too much for her to do alone. She stopped cold turkey after that and has not smoked since.
I am happy to hear that you and your husband had a good afternoon. It is wonderful that we only have to face this one day at a time.
Take care and keep asking questions.
Mary4MikeParticipantAnne,
Sorry to read of your situation. This is a wonderful place to share and ask questions. You mentioned that the transplant team at Moffett is going to assess your husbands info. As you can read by my signature, my husband had a transplant almost 3 years ago at the age of 64. He came through it well and is a perfect testimony that one can be "older" and have a successful experience. I do have to tell you that if he is accepted for transplant, they will most likely make him quit smoking. At least that was the protocol at U of M.
I also found that when he was "low" I was able to lift him up and vice versa.
Keep asking questions and let us know how things progress.Mary
Mary4MikeParticipantRoyl,
MDS is such an individual disease. Everyones response to treatment and progression is different. As you can read from my signature, my husband had a stem cell transplant 3 years ago after "living" with MDS for 10 years. I don’t believe you can use your own stem cells with MDS. I know you can with MM. Do you have siblings that could be tested for match? Don’t read the statistics on the internet. Most of them are dated. Yes, there is risk with transplant, but there is also risk with the treatments. My husband was much sicker with the treatments (Dacogen for example) than he was with the transplant.I know that many on here get upset with this suggestion, but another source of patient info is the MarrowForum.
All the best to you and keep asking questions!
Mary
Mary4MikeParticipantAnne,
Hope everything went well and that you are just using your strength to get through this part of the process and return home to recuperate.
We are here for you whenever you are ready to correspond again.Sending <<<<<<hugs>>>>>>>and prayers your way.
Mary
Mary4MikeParticipantAnn,
If you have your computer with you in the hospital and feel up to it, please let us know how you are doing. Our thoughts and prayers are with you.I know that you know, the Lord is the ultimate physician.
Mary
Mary4MikeParticipantBob ~ Sorry to hear about your "bump" in the road, but glad you are back home recuperating. It is great that you can do the IV’s at home and not have to go in to infusion every day! It did my heart good to read that your stepdaughter is like your own. Mike has had my daughter since she was 3 (38 now!) and she is "his" and he is "hers". She was at the hospital with me everyday during the transplant and she has a job in Chicago! Family is so important.
Take care and keep in touch!
Mary
Mary4MikeParticipantAlan,
You are very welcome…..any time.God Bless,
MaryMary4MikeParticipantThat is a good description of transfusion treatment. Unless you try a chemical treatment and it gives you a response ie stimulates your bone marrow so that you can discontinue transfusion for a time, but I haven’t read many testimonies where it has kept people off transfusion indefinitely. I am sure that you have done research and found that the only cure is transplant. You are still young enough (USA standards) to have a transplant if you are otherwise healthy. I don’t know if you read my signature, but my husband had a transplant at 64 years old and it has been a total success. He did 140 units of PRBC during the 10 years leading up to the decision to transplant. He also did all the available chemical treatments.
We had a doctor tell us years ago that he could keep Mike alive a long time with transfusions. Eventually, he didn’t get a "good quality of life" response from them and opted for transplant. Everyone’s journey with this disease and reponse is so indivdual. There is no one set protocol that works for all…how wonderful that would be. They are having more and more success with the mini stemcell transplants. The induction regimen is not as brutal (low ablative). My husband had this and also had no radiation. He sailed through it better than when he did some of the chemos for the disease. Again, everyone is different. From what I am reading here and on the Marrow Forum, it sounds like they are using transplant sooner rather than later in treating this.
There is much to consider. All the best, and keep asking questions.
MaryMary4MikeParticipantDo you mean spontaneous rise in Hgb? If so, no I haven’t. I can understand hesitating to begin transfusions. Have they offered any line of treatment other than Eprex ie Revlimid, Vidaza, Dacogen? What about being checked for a transplant match? You will most likely, eventually, be transfused. Whether you begin a chemical treatment or just wait it out, it is probably inevitable. If you are managing right now with the way you feel, your physician or consultant may hold off until you symtomatically need it.
Mary4MikeParticipantAnneg,
Bob is right about this. In Mike’s transplant room they had a big bottle of mouth rinse made up in the pharmacy right in his bathroom. He was told to use it as much as possible. The hall of the floor he was on went around in a circle. He was told to do so many laps a day – I can’t remember how many, but you had to add to it daily. They also made him get dressed EVERY day he was there and sit at a table and chair (in his room) to take his meals. They said this fights the image of illness and gives a positive frame of mind. Every day when I arrived, he had showered and was dressed and I really do think it helps with keeping positive frame of mind.Mary
Mary4MikeParticipantAlan,
I have never heard it mentioned here that Eprex (Procrit) lowered someones HGB. That is not to say that it couldn’t. Mostly there is either a positive or negative response. Ones body will accustom to the lower HGB and you just sort of get used to living with the symptoms. Have you had fuzzy thinking, weak heavy feeling legs? Perhaps your physician will consider trying transfusion if your HGB continues to drop. Let us know how things unfold for you.
MaryMary4MikeParticipantAnneg,
Bob is right about no 2 people reacting the same. Also, you mentioned that they are going to try a different induction treatment. Is it a clinical trial? Let us know what it is when you find out more about it.
I know that you have your head and heart ready for this and where you have put your trust!
Keep in touch!
Mary -
AuthorPosts