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sugarwhale
MemberDear Margaret,
I am so very sorry you lost Luke. I’m sitting here trying to find the right words to say. I feel so torn up inside. You are one of us. Please, Margaret, stay with us. We’re all with you and we’re all in this together.
I’m not a very religious person. I don’t know what comes after this life. But, Margaret, maybe it’s wonderful. Your Luke isn’t in pain anymore. Look back on all the happy memories and look forward to living the kind of life that Luke would be proud of.
Yours in friendship,
JanetMemberDear Scott,
Vidaza no longer works for my mom. However, it DID work for a little while. It took her two cycles to see some improvement. She had 7 days of shots, then a break.
Best of luck!
JanetMemberDear Margaret,
We care too. Don’t ever feel you can’t share your sadness, grief and worry with us. You’re one of us.
I want to tell you about my FATHER. It’s my mother who has MDS. My father died in 2000 of heart failure. Doctors told him that he would die of heart failure, and they were right. But, Margaret, my dad was told this in…1953! As long as your Luke lives, there is hope.
You have great courage. You sound like a wonderful lady. Please know that all of us are with you in spirit and that we care.
I’m not sure exactly how to send you a hug on the computer, but I’ll try! Here goes:
((((((( Margaret))))))))))
~~~ JanetMemberDear Brenda,
I’m so very sorry to hear about your dad. I want to tell you that you’re on the right track: a competent doctor in a center of excellence. The drugs you mention run the gamut from not working at all to working for a long time. If you’ve been reading our Forum, you’ll notice that we’re all different. Vidaza works for some, but not others; and, the same thing can be said about everything else. The new drug Revlimid is pending approval on January 7. It works for TWICE as many MDS patients as the other drugs. This is truly something to look forward to.
My advice is to arm yourself with…knowledge. Learn everything you can. Does your dad have chromosomes involved? Which chromosomes? Are WBC and Plts involved, as well as RBC and Hgb?
Learn the side effects of any medications. They vary considerably. Vidaza only worked for a short time with my mom; initially it made her sick. However, they can give your dad something to prevent this, so it doesn’t have to be a serious side effect. It appears that your doctor is starting your dad out with the drug that is most likely to work and least likely to produce serious side effects.
Brenda, there is something I want you to notice on this Forum: Some people have LIVED with MDS for a VERY long time! Your dad CAN be treated. There IS hope. We welcome you to our Forum and want to share our hopes and dreams and sorrows with you. You’re one of us now.
~~~JanetMemberDear Suzanne, Neil, Caroline and Eve,
I just read all your replies to my mom. You all made her feel so much better (which, I might add, takes away a bit of her stress!). We were both surprised that one could occasionally get blood that wasn’t as “rich” as it should be. Also, penicillin makes my mom feel lousy. I know how it feels, because it makes ME feel the same way. Anyhow, you all made her feel better, and I thank all of you with all my heart. You all have your own problems (which are humdingers!), yet you stopped everything to help us! Thank you, thank you, thank you!
~~~ JanetMemberDear Diner,
My mom tried Vidaza for her MDS. After about a month, her blood counts went up. Everything was fine for about 3 months. Then the Vidaza stopped working. The doctor took her off of it. Apparently Vidaza works only for a small percentage of people. Of course, if one is in the “small percentage,” there are great benefits. ‘Hope this helps you!
Best of luck,
JanetMemberDear Margaret and Luke,
Please know that we are all thinking of you and wishing you the very best. My mom always has a good saying for each of life’s rough spots that come up. Her message to you is: “It’s not over until the fat lady sings, and I don’t hear anyone singing!”
Best wishes and a hug from both of us,
JanetMemberDear Karen,
Oh, what happy news! I’m so happy for you and for your dad! We are still trying to figure out the right “dosage” and brand of the Essiac Tea. We are very confused about it. We think maybe my mom isn’t taking enough; she really felt lousy today (although there was a great deal of stress which had nothing to do with MDS). We will see if our doctor has any ideas tomorrow. In any case, from everything I have read, it DOES help, often very significantly.
Your upbeat letter made me happy, Karen. It was the nicest thing that happened to me today.
Your friend,
JanetMemberDear Phyllis,
My mom’s ferritin levels have just begun to rise (about 1300) from all the blood transfusions. Our doctor gave her an MRI to determine if the liver is being harmed by excess iron. We don’t have the report yet; however, if my mom needs it, she will start the new Exjade. She doesn’t feel any symptoms from iron overload. She does suffer fatigue from anemia though.
Best wishes to you,
JanetMemberDear Patti,
I’m so very sorry that you are losing your mom (mother-in-law?). There’s nothing I can say to lessen the sadness and heartache that you and your family are feeling.
There’s just one thing to say: Patti, don’t give up! Yes, Vidaza works for less than 30%. But maybe it will work for your mom. What about ongoing clinical trials? What about something new like Revlimid or Decitabine? What about a specialist in Alternative Medicine? What about another country (e.g. Japan, Italy) which is ahead of us in research?
Patti, don’t give up! Please don’t give up!
Best wishes,
JanetMemberDear KarenK,
I don’t know what to say, except that I am so very sorry your dad has taken a turn for the worse. I know how you must feel, because I am a daughter too. I lost my sweet dad 5 years ago from heart failure. When I read letters like yours, I just want to cry; because I know how badly you hurt inside. Perhaps I can tell you a few things that will make you feel easier.
First, take one thing at a time. Even a terrible UTI can be fixed. Your dad is still alive. Maybe they can even do something about the MDS (Revlimid might be approved in January). Secondly, just for the heck of it, start your dad on Essiac Tea when he recovers. Oh, it can’t hurt him. My mom was doing pretty bad with MDS. She started on Essiac about a month ago. Karen, she is FEELING BETTER!!! Maybe it won’t work, but even our fine oncologist/hematologist recommended it! So far, so good!!! This may represent some hope for your dad.
Lastly, try to hope for the best. My mom has a saying that I’ll share with you. She says, “Things never turn out the way you think they will, and sometimes they turn out BETTER!”
You are certainly in our thoughts, Karen. And you are in our prayers too.
Yours in friendship,
JanetMemberDear G-masews,
I certainly agree with everyone that you should definitely consult a doctor about your husband’s legs. However, for whatever it’s worth, I’ll tell you about…MY legs! They look bruised all over, although there’s no pain. They won’t go away. I’ve had them for DECADES. To my knowledge, I am healthy. I DID go to the doctor; he said they were only of cosmetic importance and nothing to worry about. However, by all means, take your husband to a good doctor. There is no sense in taking chances. Best wishes to you!
~~~ JanetMemberDear Suzanne,
I never even thanked you for replying! I’m sorry! Thank you for telling me about M.D.Anderson in Houston. We will check them out too. I didn’t mean to be rude to you! I’m not a rude person, but I AM scatterbrained! Thanks again, Suzanne!
~~~ JanetMemberDear Hope & Faith,
Certainly I’m no doctor, and I can’t tell you that your dad’s symptoms are from MDS and not something else. However, I can give you some good information about MDS that you might find helpful.
First, MDS is a serious, most often (some say always) fatal disease. You need two things to wage a successful fight against it. First, you need to learn all you can. This forum is helpful, as is the MDS Web site and its links. You can also “Google” it! The second thing you need is a fine oncologist/hematologist who specializes in MDS. If you phone the 800 number on the MDS Web site, someone can help you. You need a “center of excellence,” and I have no idea what the situation is like in Hawaii. The doctor will most likely do a bone marrow biopsy. This will tell you a great deal. Some classifications of MDS are more serious than others, require different treatments, respond to different therapies.
I can only tell you that my mother has not had any problems at all with bleeding. She has “refractory anemia” (anemia which won’t go away with treatment), is transfusion-dependent and has chromosomal damage. A bone marrow biopsy will tell you which chromosome(s), if any, are involved. My mom does not have many blasts. Some of this is good news: no excess blasts, no sign of transforming to acute leukemia, and white blood cells and platelets are OK. The bad news is that chromosome 7 is involved, and this isn’t a good sign. You need to know all of the details about your dad’s MDS. Just knowing that he has MDS isn’t enough. You also need to make yourself aware of the drugs that treat it. Sometimes they work, sometimes not. Often, after working for a short time, they’ll stop working. Most of the people on this Forum have explanations on their posts about what treatments they have had. You’ll find that everyone of us are different. One person, for example, will respond to valproic acid, others won’t. Procrit shots help many, but not my mom. Therefore, you need to learn everything you can about MDS AND about your dad’s specific condition. Get the very best specialist you can possibly find. I wish you and your dad the best of everything. Know that I and all of us at this Forum are thinking of him and of you.
Best wishes,
JanetMemberHi, Lisa!
I know how you feel about your dad. I lost my dad in 2000; my mom is my only living relative now. The way I figure it is that I MUST do my best to go on living well, because I would be letting them down otherwise. I don’t know if that helps, but I certainly know how you feel.
Essiac Tea can be found in health food stores. It’s an old Ojibway treatment that was given to a Canadian nurse. It’s a bunch of roots. It will not hurt you, but be careful of the dosage. Even my doctor now says that it will increase red blood cell production. Look earlier on this Forum; I am new to Essiac Tea, but some of the people here know a great deal about it. My mom has only been taking it for about 10 days. There is a post here called “What is Essiac Tea?” which will give you a lot of information. Good luck!
~~~ Janet -
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