Need some direction

[Nancyann]

I will try to keep this short -- my father is 91 years old and anemic. Has a form of MDS, as well as MGUS. Not crazy about the doctor who has been treating him but fortunately we are seeing someone new in about 3 wks. Dad's HCT is low and he has had 14 units of blood over the past few years. His HCT averages at it's lowest 24 and highest 32 (that happened only once). Doctor orders a transfusion if it is below 26. His bone marrow was tested about two years ago for any malignancy and none was found. Other than some minor heart issues and fatigue, he is in pretty good shape. He just wants to feel better. I have found some very useful information on this board.

Is dad a candidate for any of the drug treatments out there that I have read about? He is so tired of being tired. His old doctor did not offer much in the way of hope or treatment other than the transfusions. Questions were dismissed quickly. Dad would not budge from this doctor until recently. I am so pleased we can finally see someone else.

He did see a hematologist and did shots of Procrit, but he was unresponsive and that doctor just ordered another transfusion. I am seeing that he is not able to hold the transfusions very long anymore. He absolutely hates going to the hospital to get more blood.

What questions should I pose to this new doctor? I am making a list, but those with experience out there -- I would appreciate any feedback, comments, etc., you can offer to help my dad. He still lives alone and drives and takes pretty good care of himself. He doesn't expect to feel like he did at 70, but he just wants to feel better. Is Revlimid an option for someone his age? Thanks so much!

[bebop]

14 units in several years is great! I am not sure how they treat someone of his age but my dad was 80 and was offered vidaza but he refused it. He also went at intermidiate 1 to high in a matter of 2 weeks. He had some many transfusions we lost count in almost 13 months. He did ok until he started having to get plts 2 times a week. I wish you the best on this roller coaster journey.

[Nancyann]

Thanks so much for taking the time to answer my post. I guess my issue with the transfusions is that he feels no better and it it does not make much of a difference in his HCT levels. The doctor tells him he will feel so much better following a transfusion, but his energy level is the same -- no improvement. So do you think the medications that are out there are pretty effective, i.e., revlimid? Thanks!

[Neil Cuadra]

Nancyann,

For a 91-year-old, supportive care (transfusions) is the most usual approach. If he's tired of being tired, getting blood is the most straightforward way to help.

You have the right question for the new doctor: are there other choices since he's in pretty good shape overall? If so, what are the tradeoffs? I'd also ask whether his MGUS is a factor.

Even if a drug treatment is available, you'll have to consider whether your father would want to try it. If he hates going to the hospital for something as simple as a transfusion, he may not want everything that comes with drug treatments: more trips to the hospital, more tests, and the possible side effects. Since he's doing as well as he is, quality of life can't be ignored.

[bebop]

I agree with Neil. supportive care at this age is really about all they will do. the chemo is pretty rough as it is.

[Nancyann]

Thanks, everyone. I am still trying to decipher this roller coaster ride. It was at dad's last transfusion that I saw the MDS on the transfusion order. The doctor never mentioned it before -- only that dad was anemic, had MGUS, and other than that was in good shape. He never went over other options, etc. The more I am reading about MDS, the more irritated I get at the doctor never mentioning it previous -- at least we are done with him and will be seeing a new doctor in a few weeks. The scope of MDS is huge, as I am beginning to understand. This forum has been so helpful. I am going to run his lab results by you all and let me know your thoughts. Dad had a bone marrow biopsy done two years ago and there was no malignancy at all in the bone marrow. His iron stores were poor, but that is all the hematologist said. We tried shots of Procrit, but he was non responsive. I just want to be as informed as possible when we visit his new doctor. Thank you so much. Here are his results:

WBC Count 4.8; RBC Count 2.58; Hemoglobin 8.5; Hematocrit 25; MCV 99; MCH 33; MCHC 34; RDW 14.3; Platelet Count 290; MVP 5.1; SEG Neutrophil % 71; Lymphocyte % 18; Monocyte % 7; Eosinophi % 2; Basophil % 2

Any thoughts? I know is HCT and Hemoglobin are low as is the red blood cell count -- although it has all stayed pretty consistent over the last two years.

I am so confused by all I have read. I am thankful, however, that dad is still doing pretty well at 91. He has been anemic for many years.

Thanks for your time and patience with my questions.

[bebop]

I don't know about all the counts but his plts are great! his wbc looks ok. not too bad. I did a search to find normals when my dad was diagnosed and it helped me understand alot more. at your Dad's age I really don't think there is alot they can do med wise. My Dad's dr wanted to do vidaza but dad said no way. he was 80 at the time of dx. there does come a time in our life though I think that we are just tired. 91 is a long time hon. I would probably say his age has some to do with him being so tired. As long as he is doing ok I don't think I would try to push anything else on him. He seems pretty stable. I know your feeling of feeling helpless in this situation. We are all here for you too. Anytime!

[riccd2001]

One thing you can do is to have a clear understanding with his doc. when he orders a PRBC transfusion; for example, a Hgb of 90g/L or under infuse one unit, under 80 then increase to two, if 70 or below then it's three at a rate that dad can tolerate - probably 175 ml/hour. The slower rate may be a timeline inconvenience for staff but better for your dad to tolerate.

[Nancyann]

Thanks everyone for taking the time to answer my questions. I do realize that at dad's age the options will be limited and he may be transfusion dependent. I just hope this new doctor is a bit more empathetic and offer dad some options.
Is it possible to do in-home transfusions? I do not think the transfusions themselves bother dad -- it is the long hours at the hospital that are really hard on him. I will check that out with the doctor.

I will keep you all in my prayers as you journey through this season of your life.

Hugs to you all and thanks again.

[wilmasdaughter]

Nancy, like you & your father, I take care of my 90 year old mother who was diagnosed with MDS two years ago. She has low platelets, as well as low RBC and WBC and Hgb. It's a roller coaster ride, as everyone has said. My mother lives with several other co-morbidities, so we are constantly juggling physician visits and medications. My mother's primary treatment is Aranesp and B12 shots every month. In the past 2 years, she's probably been hospitalized half a dozen times for various illneses related to her MDS (pneumonia, dehydration, bronchitis, etc.). I have gotten a pretty good "eye" about when she isn't feeling well and a quick unplanned trip to the hematologist almost always results in a couple days in the hospital. But she has always bounced back. I know at her age that one of these times she WON'T bounce back. It's really tough to see an elderly parent go through this, and be totally helpless to provide any "real" assistance. Take care and stay in touch. Sounds like your situation is very similar to mine.

[bebop]

I don't think they will do transfusions at home. at least here they don't.