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sugarwhale
MemberDear Campbell,
My mom has been taking 10 mg. of revlimid per day. She is doing wonderfully. Her last transfusion was March 21. She will be 89 in a few weeks. True, she had a few side effects (notably, itching). But now her fatigue comes only from doing heavy yard work!
I agree with Frankie: It’s a miracle drug.
~~~ JanetMemberDear Daughter,
I’m afraid I can’t exactly answer your question. However, my mom experienced the reverse. She was on Vidaza. She had some very bad side effects; IF Vidaza worked, it only worked for a very short time. She then began revlimid. It took her about 3 weeks to feel better. Her last transfusion was on March 21. She’s now outside doing yard work. Side effects from the revlimid were well tolerated and, now, diminishing. It didn’t bother my mom in the least to switch from Vidaza and thalomid to Revlimid. It was as natural as… water. Good luck to you! Feel free to email me if I can be of any help.
~~~ JanetMemberThanks, Patti! ‘Nice to see you again too. Hope you and yours are doing well!
~~~ JanetMemberHi, Jody!
Yes, my mom is doing great. The doctor is very, very pleased also. ‘Hope you, your mom and family are doing OK also.
~~~ JanetMemberDear friend,
My mom will be 89 in a few weeks. Since early April 2006 she has been taking 10 mg. of revlimid each day. Before she began the revlimid, she was transfusion dependent. I’m happy to report that she is doing GREAT! Her last transfusion was on March 21. She gets tired, but now she’s tired from…yard work! Her hemoglobin was 12.9 last time. There are two things I would like to tell you. First, the unpleasant side effects of revlimid eventually go away. Secondly, a doctor who carefully monitors blood counts can prevent the WBC and platelets from going to low. Also a doctor can prescribe something to make the side effects more tolerable. My mom’s only side effect from the revlimid now is occasionally itching. I think it’s important to remember that all MDS patients are…different. What works for my mom might NOT work for you. However, I would certainly give revlimid a fair try, because in most cases it works very well. I might add also that my mom’s doctor wants her to take 10 mg per day, not 5 mg. That might have been your problem. I hope this information somehow helps you out. Please email me if I can be more helpful.
~~~ JanetMemberHi, Ellie!
Thank you again for your care and finding this Web site. I know that broccoli is a wonderful food for all of us. My mom knows it too. She says that veggies are just abhorent to her though! We are working with our fine doctor on increasing my mom’s appetite and her desire for nutritious foods. Thanks again for everything, Ellie. Our best to you and yours also!
~~~ JanetMemberDear Patti,
Yes, we think our doctor is wonderful. I guess the biggest thing about him that we love is that he will FIGHT to keep my mom alive. Before we found our good doctor, we went to one who wasn’t good. Believe me, had we continued with Dr. Quack, my mom would’ve died a couple of years ago. There’s another thing our good doctor does that is wonderful, too: He considers the doctor-patient relationship to be a partnership. In other words, if we ask him about, say, Essiac Tea and other things, he’ll work with us to find the answers. He doesn’t just act disgusted and think we’re too stupid to know anything. I like the way I can talk to him. He’ll also answer my emails, and THAT is a real rarity from a doctor! Yes, Patti, we’re very lucky. Thanks again for your help.
~~~ JanetMemberDear Patti,
Thanks so much! We’ll check it all out. Our fine doctor is broadminded about supplements and herbs; if we can show him of the safety of something, he’ll go along with it. We do value his opinion though; so, we’ll certainly do as he says. Thanks so much for the recommendation and the Web site!
~~~ JanetMemberDear Ellie,
Aw! Thanks so much! I’d really appreciate that. It IS true that nothing is pure anymore, and that’s really sad.
Thanks, Ellie!
~~~ JanetMemberDear Patti and Ellie,
Today we asked our fine doctor about cruciferous vegetable capsules. We explained that, not only has my mom no appetite, but she especially loathes vegetables. He said we could try the caps if we wanted, but that we should proceed with caution. He explained that he doesn’t usually recommend herbs like this, because the preparations are not pure. With my mom’s immune system being compromised, our doc seemed to think this might not be such a great idea. Do y’all have any thoughts on this? Do you know of a preparation that IS pure?Dear Caroline,
Oh, sigh! Prince Edward Island! They’ve ruined Anne; Anne is dead. But the beautiful landscapes, the lighthouses, Province House and the Fathers of Confederation! Wow! Some things CANNOT be ruined. I’ll bet even the Subway in Charlottetown has green algae sandwiches! Rabbit has a saying: She says, “Things never turn out the way you think they will, and sometimes they turn out…better!” So maybe we’ll get a PEI trip together someday, eh?
~~~ JanetMemberDear Ellie,
Thanks so much! Yes, my mom IS a winner; she’s the best mom anyone could ever have. We won’t have time for a long Canada trip. We’ll just content ourselves with Saskatchewan and Alberta. I have been EVERYWHERE in Canada, including the Great Lakes, Newfoundland and Labrador, the Queen Charlottes and the High Arctic. But I love it and want to go back. I promised my mom that I would never leave her alone. Therefore, BOTH of us hope to go!
Your suggestion about the cruciferous vegetable extract caps is a wonderful one! That’s a GREAT idea; I never even knew it existed.If this were an ideal world, my mom would completely stop all sugar and white flour. But she’d be miserable, and she’d simply quit eating anything. I want her to be well, but I also want her to be happy. Not only do I want her to eat; I also want her to ENJOY eating.
I guess I’m a bit jealous too: I sure enjoy food! I melt Royal Danish Havarti over broccoli! The evil person inside is glad my mom lets ME eat it all. It sure makes ME happy!
Thanks again, Ellie! We’ll get those caps!
~~~ JanetMemberDear Patti,
Thank you for your letter above. I don’t know the EXACT dates of the Albuquerque International Balloon Fiesta, but it’s normally during the first week in October. Fair warning: It is VERY VERY VERY crowded! About one million visitors descend on us! If you need precise dates and can’t find them, tell me; I’ll try to find out.
If you and your family visit here, there are a few “must-sees”: Old Town, Santa Fe, Acoma Sky City, Sandia Peak Tramway and the Turquoise Trail spring to mind! You’ll need a vehicle: There’s no rapid-transit and no subway; traffic crawls!
Let me know how I can help. You might try email. I think my profile accepts it.
Yes, I think our doctor is right. My mom is one of those scrawny old people who live a long time. She already HAS lived a long time. Her mom died at age 96 and was also thin and scrawny!
~~~ JanetMemberDear Seekay,
Thank you very much for your advice about the juicer. My mom has one. She will eat fruit juices, but there are very few veggies that she finds appealing. Our doctor suggested ice cream. Yes, there’s the sugar, which probably isn’t great. But she DOES enjoy it! Her problem is that the MDS gives her a feeling of being full when she really isn’t. She is getting better though. She’s no longer losing weight. I watched what she ate today, and she ate almost as much as I did! That is really saying something, too!
Thanks again, Seekay!
~~~ JanetMemberDear Patti,
Yes, my mom drinks those protein shakes. She can also get going on…ice cream. She nearly always refuses vegetables though. (She DOES take supplements). She says food just doesn’t taste good. I’ve even tried “Here comes the plane! Now, open the hangar!” I, on the other hand, have the opposite problem: I eat everything that isn’t nailed down. I wish I could be an appetite donor! Our doctor says that some of this is normal at my mom’s age; he doesn’t seem too concerned. I think my mom needs some saskatoon berry pie and those good Ukrainian perogies that are made in Saskatchewan. She also needs the pasta dishes in the West Edmonton Maul (misspelling intentional!)!
We don’t know how long the revlimid will work, but it’s doing wonders now. Thank you again for keeping us in your thoughts. I hope things are going well for you too. From what I read, everything is going fine there.
Oh, and I am just fine! I eat too much, but that’s all!
~~~ Janet-who-has-too-much-appetiteMemberDear Ellie and Patti,
Aw! Thank you both for caring! I’ve just been out of touch for a while. My mom is doing just wonderfully! The revlimid is working! The Esiak Caps are working. Our fine doctor has declared my mom to be “transfusion independent.” We’re hoping for a holiday in Canada. We don’t know yet! The doctor has to approve. My mom is now doing the yard work! The only problem she has is…no appetite! I wish I could be a donor! I can’t STOP eating! Thank you both for asking about me and my mom. I thought I was forgotten, and your notes above just made my day! Thanks, friends!
~~~ Janet -
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