MDS -> evolving AML – no treatment

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• December 28, 2006 at 5:58 pm #16555
  AboutMom

  Participant

  Greetings, all –

  Can’t say I’m happy to be here, but can say I’m glad to have found you folks.

  As (I think) I described in my signature, my mother has just been dx’d with evolving AML, after a couple-year bout with MDS (and before that, ET). She’s 89, very bright, and up to a couple of years ago was in excellent health (including walking 3-4 miles per day). The lack of red cells has taken its toll on her energy. She’s made the educated decision to say no to any treatment, except for transfusions – and transfusions only for the time that she can drive herself to the hospital (35 miles each way).

  I’m 600 miles away from her (although she’s with me now, for Christmas), and really do need to think about what her needs will be in the next few months.

  She’s seeming incredibly frail to me now, and is fighting a terrible cold, but I don’t think that her current state is critical or that anything is imminent.

  I’d like to keep her in her home for as long as possible, and believe I can talk my employer into letting me work from there for a couple of weeks a month for the near term.

  I would love to hear from anyone who is facing or has faced this situation. What are we in for?

  December 28, 2006 at 6:39 pm #16556
  patti

  Member

  Hi,

  My MIL has been doing natural therapy with transfusions only for several years. As she has grown more frail she has found it difficult to continue her juicing, supplement schedule, etc. She transfuses every 2-3 weeks, platelets weekly. I am surprised your mom still feels well enough to drive that far. I know my MIL couldn’t and she sounds a lot like your mom healthwise.

  I’ll share with you where we’re at and maybe it will help you gauge your mom’s potential needs. My MIL has chosen to stop all treatments when/if it becomes necessary for her to get platelets more then once a week. However, it looks like her organs will fail from iron overload long before that happens. When a person’s organs start shutting down (particularly the kidney and liver) their body goes to the next two available sources for cleaning toxins out of the body. That is the skin and the lungs (breath). My MIL smells horrible. Almost to the point of it being difficult to be around her. As your mom’s body weakens and her organs begin to fail you may notice this same thing. Or, her organs may not have any trouble if she’s not in serious iron overload. From our experience, a person can go a long time getting transfusions. My MIL has been doing it for 2 1/2+ years. In the end, it’s the iron that will get her. Although she’s taking Exjade for this it doesn’t seem to be keeping up with the infusions of iron. Unlike many types of cancers, we’ve been told that extreme pain is unlikely (although can’t be completely ruled out) and that it’s very likely my MIL will just go to sleep and her organs will shut down. Be it her heart, liver or kidneys. This might not apply to your mom but it’s what we were told by hospice a few weeks ago.

  As far as keeping your mom at home, unless you wanted to move her into your home there really isn’t any reason not to keep her at home. My MIL is still in her own home and will be until the end. But, she only lives 3 blocks from us so that’s a big difference. When she becomes unable to be up during the day then we will have someone there 24/7. There will come a point where your mom starts sleeping a lot and I think that will be a good indicator to you that not too many months are left. My MIL is now sleeping for several hours during the day and sometimes in the morning as well as afternoon. She’s unable to shop but for a few short minutes and plans her trips carefully. She usually has to rest for many hours after going to the store.

  Not sure if that gives you some idea of the things to come or not. It’s just things we’ve noticed with my MIL. And most of these things are being caused by iron damaging her organs.

  All the best,

  Patti

  December 29, 2006 at 3:33 am #16557
  Sally_McNamee

  Member

  Hi,
  My mother died in April 2004 from MDS which transformed to AML. She was not offered any treatment by her Drs (we live in the UK and that’s fairly routine practice with the elderly) so in effect only received palliative care. I can share with you what happened to her, but you must remember every MDS patient is different.

  She lived 15 months from diagnosis. Following a sub-arachnoid hemmorage 8 months after dx, she suffered from cognitive problems. She went on to develop Sweets Syndrome and suffered frequent nosebleeds, bleeding from the Sweets sores and bleeding generally through the skin. Patti is right about the sleeping, the last 3 months she mainly slept, becoming more and more frail until at the end her body was almost skeletal. Her doctor said that sleeping herself away was ‘the best we could hope for’. She did eventually die peacefully in her sleep, and it was a blessing for her.

  MDS is, as we all know, not an easy disease to live with for patients and carers (understatement!). I hate it.

  I continue to read the messages on the forum frequently and would like to take this opportunity to pass on my best wishes to all here. Although many of you will not know me as it is so long since my last post, I admire each of you enormously. Keep your chins up and keep fighting!
  Regards,
  Sally

  December 29, 2006 at 3:56 am #16558
  campbell

  Member

  Thanks to all who have posted here on what to expect. I have posted several times hoping to get some input like this. I know we all need to be upbeat and try to positive, but as a caregiver of a patient who is not willing to do anything but tx’s I am in constant concern over what to expect. Your posts have given me some needed info. I am the educated one on MDS and he does not want to know too much about this terrible disease.

  December 29, 2006 at 5:19 am #16559
  patti

  Member

  Campbell,

  Oh, the caregiver factor. It is soooo hard. I’m 36, have three small kids I homeschool, a home business I try to help my husband with and caring for my MIL full time. I feel crazy at times. But mostly, just exhausted. So little gets said on this site about or between caregivers from a what to expect standpoint. Maybe because it’s just too hard to talk about and maybe, like you said, because folks just want to be upbeat. But it is reality and at some point we do have to face it. Not sure I really have a point here, just venting about the exhaustion of being a caregiver when other parts of life have to continue on. I’m sort relieved to hear from others who’ve been there/are there. It helps to know I’m not alone.

  Patti

  December 29, 2006 at 3:53 pm #16560
  Sally_McNamee

  Member

  Hello again,
  I meant to say, in relation to tx, she had 2 units every 3 weeks following discharge from hospital following the SAH. In effect, having transfusions only lasted from October – February. We made the decision to discontinue tx when it became clear that it was just cruel to take her out of bed, into patient transport and then spending 7 hours in the clinic when the benefits were negligable and she was clearly confused and uncomfortable. From the time of discontinuing tx to her death was around 6 weeks.
  I am pleased that this information is of help to some of you. This kind of discussion is hard to write and, I would imagine, harder to hear for those of you who may have this to come. However, it’s not all bad. We had some very special times together in the last few weeks and I wouldn’t have missed being with her at the end for anything.
  Sally

  December 31, 2006 at 4:47 am #16561
  KWJ

  Member

  I appreciate your info too. It is hard I am sure to talk about but I want to know what to expect. My dads docs have said he may have a year but it seems that all teh info I read says more like 3 months so I worry all the time. Thanks for this so much.

  I too in the same position as the original poster. Dad was dxed with AML last month after his original MDS dx in Jan. He is driving himseld mostly to his transfusions but he can’t do chemo. He has signed up for a trial of zarnestra now at OHSU. That should start in 2 weeks. I don’t know what to expect either. He sleeps alot, but has good hours every few days. Really depends on when he gets platelets and reds.

  Take care.

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