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Andrea
MemberKathryn
My mom feels very weak during her treatments and has literally no appetite. The lack of appetite has continued even when she is not taking the medicine. She is also taking liquid supplements just to make sure she has any nutrition.
One thing to be careful of besides infection, my mom was so weak that she did fall a few times and she got a DVT which is a deep vein thrombosis, a clot in her leg which put her in the hospital again. She is going to start again next week on the Vidaza and we are all a little nervous. But the good thing is, the medicine seems to be helping the disease.
Hope your dad does well. My prayers are with you and your dad and all that suffer with this disease!
Andrea
MemberHi Kathy
My mom started on Vidaza in December. She had three treatments. The last time she was hospitalized with a clot in her leg and weakness and an infection of some sort. They decided to change her treatment to Thalidamide because the Vidaza was so hard on her.
I do feel that it was helping , the doctor said there was improvement in her BMB.Hope all goes well with your Dad. My mom hasn’t really had leg pains.
God Bless
Andrea
MemberGreg:
Sorry that it took me s o long to reply. I haven’t been on the site lately. My mom suffered from an unknown infection and had to be hospitalized for two weeks. It was also compromised with a deep vein thrombosis in her leg. She was pretty weak when we brought her home but is improving. Her numbers are pretty good,
WBC 7.7 Hgb 12.4 (!) Platelets 302,000 They are the best since her diagnosis. She did have three units of blood in the hospital. Probably needed them because of the infection. She didn’t need Procrit this week because of those numbers, but the doctor is hesitant to start her up on the Vidaza again since she is very weak.
He did start her on Thalidomide on Monday.Her last bone marrow biopsy after three months of Vidaza was continuing to show improvement, I didn’t get numbers from the doctor, but all in all he was encouraged. I hope that she can get stronger and start it again. She had few side effects. No nausea because of the Zofran med. Loss of appetite was significant, though. She lost weight when she didn’t have any to lose,
Hope your mom does great!!
Andrea
MemberHey Jody,
Haven’t been on site lately. Went to Los Angeles last week, my mom released from the hospital. She had an infection and a deep vein thrombosis right leg . The Vidaza seems to be weakening her too much so they have put her on Thalidomide.
Glad to hear about your mom’s progress! Let us know about her success with the Gleevec!!
God Bless Andrea
MemberKathy:
My mom started in December, kinda counts?? She was slated to start her third series today, but ended up with a slight fever. Don’t know the source. If her temp stays down tomorrow, theyll start on Monday. Her counts are pretty good. Last round she did end up with an infection and had to have two units of blood. Platelets are pretty high, we’re pleased about that. Hope all goes well for everyone!
Andrea
MemberJim
My mom finished her second month on Vidaza three weeks ago. She goes in tomorrow morning for a bone marrow biopsy to check progress. She takes two Zofran pills one half hour before leaving for the doctors office. She has had no nausea during her treatments because of this. She did have some diarrhea. Immodium helps that. She does get very down toward the end of the week of treatment and really tired the second week.. She also has trouble with anorexia, terribly, the second week. She is very thin, that scares us the most. Her counts have been pretty good.
Please, see if your mom could take the anti nausea drug Zofran. It’s a little expensive. I can understand her feeling down, I hope her spirits and condition improve!
God Bless Andrea
MemberHey Jody
What good news. I don’t know about my moms chromosomes, I’ll have to ask her Hematologist. I did ask him about Gleevac when she was first diagnosed and he said that it wasn’t for this type of MDS. I’ll have to inquire about that too!!
Hope the treatment starts soon and wish it success!
Andrea
MemberCarrie:
Im sorry you and your family are going through this. I know what it is like when you live far away from your loved one. You definitely have support here, pass our love and prayers to your Dad.
Andrea
MemberSo sorry to hear about your Dad. Our thoughts and prayers with you and your mom.
Andrea
MemberGina
My sister who is a breast cancer survivor was also in the hospital this last week with septicemia. Actually blood cultures were positive for Strep and her disease was called Toxic Shock Syndrome, from her breast reconstruction months ago! However, my mother’s hematogist told me that when your body has fevers, the bone marrow stops functioning properly and your Hgb plunges. This is what happened to her, she had to have three transfusions. She is home now on IV antibiotics. In addition, when you have low Hgb, your body has trouble keeping up your sats because your lungs have fewer red cells to deal with. I hope this is all it is with you, sounds like you’ve been through so much and that you will be on the road to recovery soon!
Andrea
MemberShellie:
I am so sorry your family is going through this. It does sound like there might be something going on with your dad’s liver as well, although I’m sure the doctors have looked into that. Please keep us up on his condition. He is so young. God Bless your family, hope he improves soon.
Andrea
MemberShellie:
I am so sorry your family is going through this. It does sound like there might be something going on with your dad’s liver as well, although I’m sure the doctors have looked into that. Please keep us up on his condition. He is so young. God Bless your family, hope he improves soon.
Andrea
MemberCarrie
Same thing happened to my mom last week. It coincided with her dose of Vidaza. She was 101.4 She has been in the hospital for a week and just got out tonight. Her temps spiked on and off all week. They never figured out where the infecton was, but they were sure there was infection because her Hgb went down and she had to have a transfusion. Now she is home, afebrile, but she has layrngitis and I an uncomfortable with that. Hope it isn’t another infection.
Hope your Dad has smoother sailing from here!!
Andrea
MemberSarah,
I am so sorry about your Dad. I can’t kmagine the pain and sadness. God Bless You and your family,
Andrea
MemberVangurdsheet, I know what you mean about the blow which hits you low and hard.You are much younger than I am, so sorry you are going through this at such a young age. My mom was never sick before this. Luckily I have two sisters. This is a great site for help and friendship. God Bless
Is Revlimid appropriate for CMML?
Thanks, Andrea
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