Father in Law with MDS

[m garmon]

My Father In Law is 86, he was diagnosed with MDS a little over a year ago.
He had to have blood every three months up till three months ago then it was every month. For the last six weeks it has been every two weeks. He had a bone marrow test last Thursday, they said the results will be back in 10 days.
We have watched him go down so much in the past year. I fear his time is short. His blood count will drop to 5, 6 or 7 and they will give him two units.
He has a fallen several times in the past month because of light headiness.
He was on procrit up till the end of July. Now he is on nothing.
Is there any drugs that will help at this late time?

[DanL]

The bone marrow biopsy will probably help identify potential next steps. They will be looking for cytogenetic abnormalities, degrees of dysplasia, which blood lines are most affected, and the percentage of blasts (immature cells) in the marrow.

There are three FDA approved drugs that are commonly used. Vidaza, Dacogen, and Revlimid. Revlimid is used when there is a particular type of cytogenetic abnormality knows as a 5q deletion.

All of the drugs have been used in elderly patients effectively, and may help improve his transfusion dependency and quality of life.

[m garmon]

Thanks for the info. I think I understand that they do not like to use a lot of these drugs on the elderly because they are so harsh. I will post the results when they come back. I will do some searches on these drugs and talk to the doctor on Thursday. All Help welcome, Thanks again !

[m garmon]

One more thing, he has also been diagnosed Deep vein thrombosis and stage 111 chronic kidney disease. He had prostate cancer 12 years ago, it was treated with radiation, went into remission till about year and a half ago. Doctors are treating it with Lupron. His level is back down on his PSA test.
Doctors says cancer is not in prostate but is in there somewhere.

[DanL]

With the other factors, it is possible that the doctors may want to lay off of additional therapy. There are a good number of studies on the drugs and their use in patients with other health problems. Vidaza in particular has been used in patients with Kidney problems, but the treating physician would know best how this applies to your father in law's case.

[m garmon]

Thursdays visit went ok. No fever ( for the past month has had a low grade fever ) Blood count was only down .08, so no blood this week. He had lost six pounds in the last 2 weeks but gained a pound back this week. Bone test due back next Thursday. The doctor doing the test showed my mother in law a tube with a lot of white in it and told her that was not good. I have been invited to go with them to next Thursday visit & ask questions if I want. My father in law was not been told what subtype of MDS he has, nor how sever his MDS is. I hope to have some questions answered. I will post more after next Thursdays test results.
Thanks for all help you can give me.

[bebop]

I went with my dad to all his appts with his oncologist so I would know firsthand what was going on. I think when our parents are aging they don't really understand what is going on or what questions to ask. I think it is great you are going along with him!

[m garmon]

Test results back today. Bone Marrow Blast, %:<5, IPSS score Low risk.
This was the 2nd marrow test. Doctors now say he has Pure Red Cell Aplasia.
They really can not tell us why his blood levels drop 2 to 4 points every two weeks. It was explained today that the MDS is minor, the PRCA is major and it is like something is missing in the middle that makes the blood drop so fast. They want to treat PRCA with steroids but first will send results to another specialist to look at. He is getting to pints of blood right now his level dropped to 7.2 since last week it was 9 this week. Any one know anything about PRCA.
Today was good news & more mixed up news.

[triumphe64]

Originally Posted by m garmon

Test results back today. Bone Marrow Blast, %:<5, IPSS score Low risk.
This was the 2nd marrow test. Doctors now say he has Pure Red Cell Aplasia.
They really can not tell us why his blood levels drop 2 to 4 points every two weeks. It was explained today that the MDS is minor, the PRCA is major and it is like something is missing in the middle that makes the blood drop so fast. They want to treat PRCA with steroids but first will send results to another specialist to look at. He is getting to pints of blood right now his level dropped to 7.2 since last week it was 9 this week. Any one know anything about PRCA.
Today was good news & more mixed up news.

I have PRCA.

[sophia68]

That's great you were able to accompany your dad to all his appointments, unfortunately, we're not able to do the same for dad... He has an appointment every week and due to work, we do not have that freedom. My nephew has been visiting from England for a few months and has been taking dad, but he's leaving tomorrow, so dad will have to start taking a taxi by himself again.

I agree our aging parents do not understand or know which questions to ask...they just want to get the appointment over and done with.

Originally Posted by bebop

I went with my dad to all his appts with his oncologist so I would know firsthand what was going on. I think when our parents are aging they don't really understand what is going on or what questions to ask. I think it is great you are going along with him!

[sophia68]

Hang in there and continue to post here for support. You are not alone and will find this forum a great source of information.

My dad will be 83 in November and was dx with MDS-RARS in June 2006. The disease is getting progressively worse now and I think my dad has just about had it with the dacogen treatments. It takes too much out of him. He'll probably remain taking the Revlimid and Exjade and get tx as necessary.

Originally Posted by m garmon

My Father In Law is 86, he was diagnosed with MDS a little over a year ago.
He had to have blood every three months up till three months ago then it was every month. For the last six weeks it has been every two weeks. He had a bone marrow test last Thursday, they said the results will be back in 10 days.
We have watched him go down so much in the past year. I fear his time is short. His blood count will drop to 5, 6 or 7 and they will give him two units.
He has a fallen several times in the past month because of light headiness.
He was on procrit up till the end of July. Now he is on nothing.
Is there any drugs that will help at this late time?

[m garmon]

Thanks Sophia for the encouragement. We are blessed to be retired. We moved here to help him and be here for him. They have not started any new treatment yet. Next doctors appointment is tomorrow, we will see what they decide to do.

[m garmon]

Sophia does your dad get transfusions ? We were wondering if the fact he has to get them every two weeks means it is getting worse. Doctor is sending test off for a second option. He said they had not figured out why his blood will be fine one week then drop 2 points the next week.
Thanks

[bebop]

is your dad on arnesp or anything like that to help keep his levels more stable? Dad started off getting blood about once a month and progressed to 1 x a week but 2 units at a time. he remained pretty stable with that until his platelets became involved

[m garmon]

My father in law went in today for his weekly visit. His blood count last Thursday was 7.8 so he received two units of blood bring it up to 9.8, today his count was 9.4. This should take him through about a week and a half.
He is not on any medicine right now. He was on procrit for several months but has been off of it for about 3 months. Waiting on second option before new med's are started. He gets disoriented, light headed & weak even with blood being up to 9.4. Right now it is a wait and see.

[bebop]

you may want to have them check his oxygen levels if he is disoriented and dizzy.

[nitzi]

Our situation with my dad sounds similar. My dad (84) diagnosed with MDS in spring ’11. My mother is primary care giver -- a demanding task. His transfusions have ceased and we initiated hospice care in the home about 3 weeks ago. So far hospice care has been perfect fit for our situation. He sleeps ~16 hours a day now. Want to keep him at home--just not sure how his condition will progress. Labs from early Sept: WBC 0.6, RBC 2.16, HGB 7,5, MCV 102, PLT 26

[bebop]

nitzi did your dads dr stop treatments? My dad lasted a month once his were stopped. He did not want hospice so me and my stepmom were his caregivers during that time. he was not in pain until the last couple of days so no medication was needed thank goodness. let me know if I can help in any way.

[nitzi]

Last spring he had Vidaza---but not since. That sent him to the hospital. his immune system was so weak he developed MRSA. Is that what you mean by "treatments"? He had been getting procrit--but that stopped early Sept. His appetite is slowing. He has oxygen but doesn't realize he needs it. Like your dad, he is not in pain. What do you think we should look out for in terms of changes that occur toward the end? more sleeping, weaker, no strength to walk?

[bebop]

treatments-blood and platelet transfusions. with dad and I am sure everyone is different at the end or towards the end. Dad really didn't eat much or drink much for that matter for the last few weeks. the last 2 were horrible for those. the day he passed he was laughing and talking went to the bathroom and I had to go get him. I got him stood up and he died in my arms standing there. I think his heart just gave out. his pain started on saturday and he took tylenol for it. of all the things the dr said could happen at the end none of it did. ie: bleeding was the main one she talked about or just going to sleep. the day before Dad grew very weak and could no longer really walk by himself so we put him on a walker with the seat to take him to potty and such. if you would like to pm me your number I would be more than happy to call you anytime you need to talk or ask questions.

[m garmon]

Strange report this week. Doctor said he thinks dads body is healing its self.
Nothing has changed, he still has to have blood every two weeks, still get dizzy and falls every couple of weeks. Doctor sent morrow slides off for a second option and was told that they could not find anything different. His MDS level was low, so now the doctors said he thinks he has little or no MDS but the bad part is he has Pure Red Cell Aplisa. They do not know why his blood drops 2 points every other week. No meds are being giving they are just going to watch him. He was on Procrit for about six months but they took him off about a month before telling him he has Pure Red cell Aplise. I read that it is possible for procrit to cause PRCA. Has anyone ever heard of this ? We are thinking that we may need to take him somewhere else to another doctor. I mean he does sill get week, dizzy and need blood. He feels a little better, doctor said that is because his body is getting use to less blood, Could the doctor be right and his body is healing its self ?

[bebop]

I would go to one of the centers of excellence for a second opinion. one thing we found for my dad was that when he got the least bit stressed his levels would drop pretty quickly.

[triumphe64]

Originally Posted by m garmon

He was on Procrit for about six months but they took him off about a month before telling him he has Pure Red cell Aplise. I read that it is possible for procrit to cause PRCA. Has anyone ever heard of this ? We are thinking that we may need to take him somewhere else to another doctor. I mean he does sill get week, dizzy and need blood. He feels a little better, doctor said that is because his body is getting use to less blood, Could the doctor be right and his body is healing its self ?

There are many articles and clinical trials that indicate Procrit can cause PRCA.

BTW: I sent you a Private Message when you first mentioned PRCA. Look at the upper right of the screen to read it.

[m garmon]

Weekly doctors visit today. Good news is dads red blood count was at 8.8 today, it has been two weeks since he received blood. Normally it drops two points on the second week, bad news is his antibodies were up. They are going to go ahead and give him two pints tomorrow but will have to check the bloods antibodies. Still do not really know what is going on.

[bebop]

my dad had to get blood out of Atlanta due to his anti bodys. his counts seemed to stay up longer then getting blood out of the local blood bank. also one other thing came to mind is that if the blood is really fresh it stays longer too. one other thing is that stress affected how long between transfusions as well.