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sugarwhale
MemberDear Lisa,
You must have finally slept. There are a few other treatments available other than the forthcoming Revlimid. There’s arsenic trioxide (not as fearsome as its name) and decitabine. However, there are some possibly serious side effects. Personally, I think the forthcoming Revlimid is a better bet!
My mom has just recently started on Essiac Tea. It MAY be working. It’s too soon to tell yet. However, it can’t hurt anything.
I do have a thought that I haven’t seen much about on this Forum. The fact is that more and more people are getting MDS, since more and more people are surviving cancer. With so many cases of MDS, it’s a drain on the Nation’s blood supply. This is why I think they are going to try to do something! I hope I’m correct, and I hope they do it soon!
I hope all this helps! Keep in touch with this Forum. The people here are nice and very helpful.
~~~ JanetMemberDear Lisa,
My mom and I know exactly how you feel. My mom took Vidaza for about 3 months. It worked wonderfully for those 3 months; then it stopped working. Her hemoglobin plunged and she was back on transfusions again. She also tried Thalomid. That worked also for a short time; it too stopped working. Both the Thalomid and the Vidaza gave her some rather bad side effects.
Now, like you, we are anxiously awaiting the Revlimid. There is a very good chance that it will be approved by the FDA on or before January 7. It is already being manufactured.
From what I read, Revlimid helps many kinds of patients, including MDS patients with chromosome abnormalities other than 5q. It does work in a greater percentage of patients with 5q than with other chromosomes, however. It also works for multiple myeloma,CLL and (I think!) a few other cancers. Personally, I am optimistic about the Revlimid. When it works, it may not be forever. However, by the time it stops working, maybe there will be something better!
Lisa, I see that you are up late. So am I. I will post this and look back in about an hour. If there’s another message, I’ll answer. In the meantime, let’s look forward to the Revlimid.
Best wishes,
JanetMemberDear Conrad,
Thank you so much for this! Our wonderful oncologist is very progressive. He will certainly allow my mom to have the most updated and effective treatments available. I really had no idea about this though! Thanks again!
~~~ JanetMemberDear Robin,
I’m so sorry that you lost your dad. I lost my sweet daddy too in 2000. We were really close. I want to tell you that we still are. Sometimes I feel my dad inside my mind, almost as though he is guiding me. I feel that I must live a life now that he would find pleasing, because I am his legacy. You are your dad’s legacy too. Part of your dad will always be found within you.
~~~ JanetMemberDear Caroline,
I am so glad that your poor dad finally got help and is now much better. I’m just very sorry you had such a rough time with the hospital staff. Since I was a little girl, I have loved Canada and have tried to learn all I possibly can about it. There are many things in Canada that I really envy. But I felt very sad about your hospital experience. It shouldn’t have happened. We have sub-standard treatment here too, no kidding. The last time I was in a hospital, they insisted on calling emergency reviving equipment, because a nurse had declared me dead. I wasn’t. I was…dreaming! They are too stupid to live.
I’m so sorry you were treated so shabbily, especially by…Canadians. But I’m so happy your dad is OK now!
~~~ JanetMemberOh, my, I am so sorry to hear such sad news. Caroline, you are in my thoughts. If only wishing could make things so…. With all my heart, I am wishing….
~~~ JanetMemberDear friends,
Yes, me too! I get the fatal error and cannot access this forum. I don’t think it’s our computers though.
~~~ JanetMemberDear Marylinda,
My mom gets transfusions when her Hgb goes below 8.0. The procrit won’t work for her. Our fine doctor explained that in some people, their bone marrow simply doesn’t produce enough red blood cells. For them, procrit helps. However, in other people, the marrow DOES produce enough blood cells. The problem is that the cells do not function correctly and end up crowding the bloodstream. I hope this helps.
I agree with Bec above that no questions are stupid. A really fine doctor won’t humiliate you when you ask an honest question. I might suggest that you call the MDS 800 number and ask them to recommend a fine specialist in your area.
My mom’s first oncologist-hematologist was very abrasive. We’d ask a simple question, and he’d give us that “I am GOD and YOU are STUPID!” look. The wonderful people on the MDS number even scheduled our first appointment with our wonderful doctor. This doctor takes TIME with us; he respects us; he always answers our questions.
Best wishes to you! I hope all this helps.
~~~ JanetMemberDear Diner,
My mom had Vidaza for MDS. After about 2 cycles, her blood counts went up to nearly normal. Everything was just fine for about 2 months. Then, sadly, the Vidaza stopped working.The blood counts plunged to what they were. My poor mom is now hoping the Government bureaucrats can find the time in their busy lives to approve Revlimid before my mom dies. The problem with Vidaza is that it works for only a small percentage of patients taking it. I hope you are one of the fortunate few, Dee! Good luck to you!
~~~ JanetMemberDear Caroline,
This little note concerns your ulcer. I am under the impression that medical science has now found that ulcers are caused by a bacterium. They have an antibiotic. If you take a full round of the antibiotic, the ulcer will disappear. A friend of mine had this done recently; there were no problems at all.
I wish I could help you with all your other problems. You must be a strong person. You HAVE to be! Just know that you are in my thoughts and that I hope things turn out better for you. My dear mom has a saying that I can share with you. She says, “Always remember that things never turn out the way you think they’re going to, and sometimes they turn out better!”
Thinking of you,
JanetMemberDear Margaret,
This is great information. Thank you so much for sharing! Try the Muskoka for inspiration. We love Canada, too!
~~~ JanetMemberDear friends,
Well, I have another question about my mom and the Essiac Tea. She bought the teabags. On the box it says that one bag is one serving. I don’t know how much to tell her to take. We know to steep the teabag in the boiling water for 10 minutes, and we know to drink it on an empty stomach. But…how many cups per day? Only a fraction of a cup? 3 cups? One can get too much of this, especially at first.
Thank you for helping us out!
~~~ JanetMemberDear Neil and Lindajo,
Thank you both again. Lindajo, I DID get that Website OK now. It’s a very helpful one. I think that Neil answered my question: You can’t get information about blasts from a regular CBC. I wonder what my doctor meant. Possibly he referred to my mom’s previous BMB where she had few if any blasts. Anyhow, I do thank you both.
~~~ JanetMemberDear Patti,
Face it: MDS is a serious disease. You need–desperately need–a good doctor. A good doctor is one with an open mind; one who does not cringe when you say the “H”word (herb) or the “A”words (Alternative Medicine). I understand fully how you feel, because my mom started out with a doctor who had the Bedside Manner of the Marquis de Sade. He flatly consigned my mom to death, walked out, and refused to even answer our questions. Another doctor said (and I quote!): “You’re 85, Lady! What th’hell do you expect!” They ought to be horsewhipped!
Now, Patti, I have a good idea for you. Somewhere on this nice MDS site, there’s an 800 number which connects you to Moffitt Institute in Tampa. They can hook you up with a “Center of Excellence” and a fine doctor from whom you and your MIL can get competent, compassionate treatment. We couldn’t be happier with the doctor we have. He is kind, as well as being knowledgeable. With your MIL having such a serious disease, you need all the help you can get. This includes Alternative Medicine.
There is, alas, danger in some Alternative Meds. There are a lot of people trying to make a fast buck on things that could even be harmful. But a fine, competent physician should be able to lead you in the right direction. My poor mom may die of MDS, but I know that if anyone can save her, our good doctor can. Good luck to you! I hope you find someone caring. You and your MIL deserve the best.
~~~ Janet aka SugarwhaleMemberDear Neil and Lindajo,
Thank you both so very much for responding. Neil, I read your Website completely. All I can find about measuring blasts is that it seems to be associated with increased MCV, but normal MCHC. I’m sorry, but I just don’t understand. Bear in mind that I got a D- in chemistry: I got THAT because the professor LIKED me! Is there some simple explanation of how to determine the number of blasts by reading the CBC report?
Lindajo, I thank you also. However, when I go to this Website, it just says “Page cannot be found.”
There just has to be an easy way! Thank you both!
~~~ Janet -
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