Forum Replies Created
-
AuthorPosts
-
Dale FrankParticipant
Cammie,
I was at City of Hope considering a stem cell transplant and they gave me a 140 page book, “A Patient’s Guide to Blood and Marrow Stem Cell Transplantation” written by a successful transplant patient. The book details his journey. I found it helpful. I also read and enjoyed “Everybody’s Got Something” by ABC news anchor Robin Roberts, who had a transplant in 2012-2013.
Hope this helps.
Dale FrankParticipantRose,
Thanks for the update. Best wishes to you and hubby.
Dale FrankParticipantDon, I know there is a preference to just use a local anesthetic for bone marrow biopsies (BMB) due to logistics–with propofol, patient must be driven to and from, no food or drink from midnight before–and cost. I agree with Kathy that patient’s request should be honored. I had a BMB at Torrance Memorial Medical Center in the Los Angeles area, and, at registration, was given the choice of propofol, which I gladly chose. No pain during or after BMB. Both my treating oncologist who wrote the order, and my consultant at City of Hope, were surprised I got propofol and indicated that they just use a local. Now, 6 mos later (after 5 cycles of Vidaza) I am going to get another BMB and will request the propofol again.
Kathy, in your post you referred to a minor relaxant: “versed”????
Dale FrankParticipantHi Donna. To answer your question, I’ve been getting transfused with two units of red blood monthly for about 7 mos. I started Vidaza 4-5 months ago but I’ve needed transfusion before each round of Vidaza because my Hemoglobin slips to below 7.5.
You’ve been getting your Dacogen IV? After 3 rounds of getting sub-cutaneous belly injections, I had a port installed because my doctor and nurses said IV injections would be too hard on my veins.
Best wishes to you and all on the forum.
Dale FrankParticipantPatrick, thank you for the info and glad you are doing well. Did you ever have low WBC before taking REVLIMID. Also, what was/is your diagnosis
Thanks.
Dale FrankParticipantGood luck Alma and thank you for your good wishes.
Dale FrankParticipantThought I replied to this but must have messed up. I had a port “Power Port” installed about a month ago because of injection site reactions to belly shots. Have had one transfusion and one round of (5) Vidaza injections through the port and find it much preferable to belly shots. I agree that port should be installed by doctor very experienced with ports, usually an interventional radiologist.
Dale FrankParticipantAlma: I think you can get constipation/diarrhea under control with the use of meds. Do you like ginger? Ginger chews help with nausea
Dale FrankParticipantPat,
Thank you for the info. I hear you re: MDS taking over one ‘s life. The reduction to 3% blasts is great. Does he have low WBC count, too? Are they improving? Best wishes to you and everyone fighting MDS.
BTW, Has anyone experienced blistering with Vidaza OTHER than at injection sites? I got blistering on tummy after sub-cut injections there so I had a chest port installed. Now, 3 days into port injections developed leg blisters🤔?
Dale FrankParticipantThank you Pat. When you said your hubby’s MDS in remission, did you mean no transfusion necessary, i.e. counts up? He is still on Vidaza and Veneteclax, right? All the best and thank you. I am 71 Male RAEBII, 8% blasts as of January.
Dale Frank
Dale FrankParticipantThank you Agnes. My situation similar to your mom in that I am getting monthly transfusions due to low hemoglobin. On my 4th cycle of Vidaza now and I hope, like your mom, that the Vidaza will make transfusions unnecessary or at least less frequent. All the best.
Dale Frank
Dale FrankParticipantPat,
May I know where your husband’s clinical trial with Veneteclax was located?
Dale FrankParticipantDonna, thanks for the info. Is Dacogen similar to Vidaza? I’m about to do 4th cycle of Vidaza. Still getting monthly transfusions for low hemoglobin. My WBC is only 1.0. Diagnosis of RABII with 8% blasts about 4 mos ago. Best wishes to you and all on forum.
Dale FrankParticipantRose, sending my very best hopes for you and hubby. Thanks for all the info in your diary. It is so helpful to those of us dealing with MDS and considering SCT. I just got on the forum and so read your posts “retroactively”. I have a good feeling for your outcome.
Dale FrankParticipantAlma. I had similar pro/con feelings when I started Vidaza 4 mos ago. I can only say that the side effects have not been as bad as feared. I wish progress on counts was faster but I understand that 4-6 months is usual to see progress. Such a personal choice. All the best.
-
AuthorPosts