MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

My Dad

Home forums Patient Message Board My Dad

Viewing 15 posts - 1 through 15 (of 147 total)
  • Author
    Posts
  • #18300
    katiebear
    Member

    Has anybody ever heard of a SCT transplant with a MUD if your blasts are above 5% but below 10%? Can this actually work? I’m afraid I’m getting half a story from my dad. He’s having a tough time of it right now. He has fluid in his small intestines, E Coli, I’m not sure which strain, and this morning he was bleeding from his catheter. He told me the antibiotic he is taking, and it is defined as being a last resort. Now his doctor is encouraging him to try to look for a donor. This is extremely frustrating. If anyone has any info on this type of transplant, I would appreciate it.

    Thanks

    #18301
    PAG2005
    Member

    Hi Katie,

    I believe some patients have gone through SCT with greater than 5% blasts. You should post your question on the Leukemia and Lymphoma Society discussion board – http://www.leukemia.org/hm_lls

    I’m sure you will receive a response. There are many posts from patients that have gone through SCT’s and some of them have transformed from MDS to AML. You should encourage your dad to let the doctor search for a donor because it takes time to find a match. Your dad doesn’t have to go through the SCT if they find a match but at least he will have the option. When he feels better, he might want the option. You and your dad are in my prayers. Pat

    #18302
    riley
    Member

    Hi Katie,

    I don’t have an answer for you, but I just wanted to let you know that I’ll keep you and your father in my prayers.

    Nicole

    #18303
    katiebear
    Member

    Hi Nicole,

    I really appreciate that.

    Katie

    #18304
    riley
    Member

    Hi Katie,

    How is your father doing today? I hope things are looking up.

    Does he still want to do the transplant? If I’m recalling correctly, did he have a sibling who was a perfect match? You mentioned the doctor wanting to look for a donor, so I must be remembering that wrong. There are so many factors to consider, and especially, what your father’s wishes are.

    If you can tell us more about where things stand now, maybe someone more knowledgeable than me will jump in with some advice or some questions for you to ask your father’s doctor.

    Nicole

    #18305
    katiebear
    Member

    Nicole,

    You are recalling correctly. His sister is a perfect match. He was supposed to get his transplant in March, but he came out of remission and transformed to AML. He went thru induction chemo, and it got the blasts down to 12%, not good enough. Right now he is at Sloan getting more induction chemo, which is even stronger than the last round. His doctor told him that this induction round only has a 20% chance of getting him below 5% which would be good for the transplant. She told him that if this doesn’t work, his options are running out, there is not much more she can do. She did ask him to sign some papers for a transplant using a MUD if she can’t get his blasts down below 5%. If they are between 5% and 10% they can use a MUD. She said that my aunt’s stem cells wouldn’t work if his disease was active.

    Last week he had some type of fluid in his small intestines, and a blood infection. He was bleeding from his cathetor, and from a hang nail. Now today they won’t let him out of bed because of a blister on his foot. He remains in wonderful spirits though. I am going up today. It’s hard to get there more than twice a week as it is 70 miles from home.

    Thanks for your post, Nicole, it really helps to talk to other people.

    Katie

    #18306
    jaxem
    Member

    katie

    i wonder why your aunt’s won’t work but another donor’s would??

    man, he’s going through a lot now. he’s in a great institution & I’m sure they’ll be doing all that can be done. hang in there!!

    #18307
    katiebear
    Member

    Jack,

    I’m only getting this info second-hand. Sometimes my dad puts his own spin on it. The doctor told my dad that my aunt’s cells are too closely related to his, and at that amount of blasts, that wouldn’t be a good thing. I told him to ask the doc about Vidaza and Dacogen, but he still hasn’t. Do you think it would work again as he already came out of remission while on it? I’m also scared of him getting more infections as his counts have not one bit started coming back at all. Does it seem like it’s taking too long? How is your wife doing. I continue to keep you guys in my prayers.

    Katie

    #18308
    riley
    Member

    Hi Katie,

    I’m glad you got to see your father today. How was he? Are the antibiotics working to start clearing up his infection at all?

    I’m really sorry he and you are going through such a rough time. I’m sure many here can relate to the rollercoaster ride that you’re on right now. It’s great news that he remains in good spirits — I really do believe that makes a big difference.

    Does your father want to go ahead with the MUD, if possible? If so, I agree with what Pat said earlier to let the doctors go ahead and start searching for a donor. It can take some time to find a good match.

    My father never tried Vidaza or Dacogen, but all of his chemos were ones used to treat leukemia. For his second round, we lived in the hospital for 12 weeks because his counts took that long to rebound. His doctor just said that sometimes counts can be “pokey.” He also said it sometimes happens more often with the “heavy hitter” chemos. I don’t know how Vidaza and Dacogen compare with the ones my father was on at that time (Topotecan and Etoposide), but I hope it’ll be the same for your father — that the chemo is doing its job really well and the counts are just taking their sweet time in coming back.

    Would you be able to schedule a phone call with your father’s doctor so you can ask him some of the questions that are weighing on you?

    I’m keeping you and your father in my prayers.

    Nicole

    #18309
    katiebear
    Member

    Hi Nicole,

    My dad is doing okay. He looks a little bit older and tired, but not too bad. His counts are extremely “pokey”. I’m not sure what drugs they used for his first induction which only helped somewhat. I know that this round they used a MEC regimen which is much stronger than the last one. The doctor told him that if this didn’t work his options are running out, and that’s when she told him about the MUD transplant. Jack had asked if they could try Dacogen or Vidaza if this didn’t work enough, and I am still waiting for my Dad to ask the doctor. He is quite touchy about us talking to the doctor. He has a one day at a time approach to this situation which is good, I am trying to do that but as I’m sure you know it’s hard. I feel like I want to prepare myself in case, which is absolutely ridiculous, because with my mom, I knew everything, and when she passed I still felt like I was kicked in the stomach. I would love to actually talk to his doctor, but I don’t want to step on his toes either.

    As far as the infection goes, it’s cleared up. No fever, which is really good. I just worry as he contiues to be neutropenic. He has a small blister on the bottom of one of his toes, and of course I’m afraid it’s going to open up, hopefully it won’t. Thank you for responding to my posts. I feel like I’m going nuts.

    Thanks again,
    Katie

    #18310
    jaxem
    Member

    hi, katie

    i guess the doc thinking there is if they’re too similar, his stem cells will remain, and what you want is a little dis-similarity so that the new stem cells kill his remaining stem cells and take over. interesting but i guess a little gvhd can be good. i guess i forgot that your dad was on vidaza, correct? the “E” in “MEC” is for etopiside so i guess he’ll be getting that chemo again. a MUD transplant is from an unrelated donor rather than a sibling.
    thanks for asking about my wife. she’s into her 4th week of the 3rd dacogen round. I think the hema want to do a bmb next week to see if it’s working. i’ve got my fingers crossed.

    #18311
    riley
    Member

    Hi Katie,

    I just sent you a PM.

    I’ll ask this question here though since it might help others who search the board in the future — can you or Jack tell me what MEC stands for?

    Thanks,
    Nicole

    #18312
    katiebear
    Member

    Hi Nicole and Jack,

    That’s what the doc said about my aunt’s cells. Too close and it will definately reject with anything over 5% blasts. When he first got diagnosed my dad was treated with Vidaza and it worked for a number of months. I have been looking around the website that Pat suggested at the top of this post, and there has been a wealth of info regarding transplants. I will keep praying for your wife, Jack.

    The MEC stands for Mitoxantrone, Etoposide, and ARA-C. As of yesterday, my dad’s counts have not budged at all. He’s been neutropenic for almost two weeks and it’s scary. I know he’s in a good place for all this, but nonetheless, it is nerve wracking. Thank you for your posts. Take care.

    Katie

    #18313
    katiebear
    Member

    I have more questions. My dad’s white count has been nonexistant for two weeks. This morning he woke up in excruciating pain in his lower back around his kidneys. He got his CBC for the day and all of a sudden today, after having no white cells at all yesterday, has a count of 1.2. Now don’t get me wrong, I really want them to come back, but is this good? He said the nurses seemed surprised, they didn’t expect that. He described to the nurse what type of pain he felt, a pulsating pain, and she said it sounds like his marrow is squeezing together. He is also retaining fluid. He has not urinated all day, and his ankles are starting to swell. They did take a urine sample, hopefully that will tell something. They won’t give him tylenol because they don’t want to mask the fever. Right now they are giving him motrin, which worries me because his platelets are low and I know that make you bleed. When he went in for induction last time his counts came back very slowly. This is all different. Does anybody have any experience with this?

    Thanks,
    Katie

    #18314
    riley
    Member

    Hi Katie,

    I’m sorry your father is having such bad pain today. I’m keeping him in my prayers.

    Is the pain in his bones or around his organs? If it’s bone pain, my father had that after his chemo and about one day before his counts started coming back. He described it as an all over aching in his bones. He didn’t act like it was an intense pain, but persistent and annoying. His nurse told him it’s common when the marrow starts to function again.

    Since you’re saying excruciating pulsating pain around the kidneys, that makes me wonder about kidney stones. If there’s a blockage, I believe that could cause fever and cause urination to stop. My father didn’t have kidney stones, so I don’t know for sure. Maybe somebody else here will know more about that.

    My other thought would be to rule out an enlarged spleen. When my father’s spleen was enlarged, he first had lower back pain and then abdominal pain, and his counts were low. It can often be ruled out with a physical exam. If they need confirmation, they may order a CT scan.

    Please keep us posted.

    Nicole

Viewing 15 posts - 1 through 15 (of 147 total)

Register for an account, or login to post to our message boards. Click here.

  • You must be logged in to reply to this topic.

Login

Login

Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert