Can anyone help with some answers?

[LoriR]

Hi all,
I have read several forums and confused about what to expect for my father.

Yesterday my father was confirmed to have MDS. It seems possible is was triggered after he was given radiation for his prostate 3 years ago. The doctors seem to have very few answers so I hope to find some answers from you wonderful people.

He is 84 years old and taking care of my mother who has alzhiemers. His only symptom is blood loss and he has had several blood transfusion due to this. He is still feeling "healthy" so I can not talk him into moving to my state (where I work) to help care for them.

My question is…..How fast can this progress? Also, is there any one is the Nashville Tn area that know of a doctor that is knowledgable about this? What do we need to prepare for, or expect?

I saw there is no cure and all we can do is manage this. Is there any Herbs or other kind of non medical things that has worked for you or your loved one?

Thank you so much for your help and blessing to all of you.

[Mary4Mike]

Welcome Lori!

You have found the right forum for information and support. Your father’s MDS is most likely a result of the radiation therapy he had. Radiation and chemotherapy have a tendency to render one’s bone marrow "broken" as one hemotologist explained it to us.

In order to gain answers to your questions, please give us more medical info on your dad ie the type of MDS he has. Also, what do you mean his only symptom is blood loss? This is not a typical symptom of MDS. Could you mean loss or lowering of HGB or red blood cells? This would be a reason for transfusion.

As far as alternative or complimentary treatments, I can only offer this……my husband has tried vitamins, herbs, you name it. Has it helped? Who can say? It certainly isn’t going to cure a person’s disabled bone marrow, but it could keep their immunities elevated so that they don’t pick up a secondary illness. Just make sure that his doctor is always aware of what he is taking. We haven’t found a doctor yet that agrees with alternative, but they haven’t forbid it either.

God bless your dad for taking care of your mom. My 84 year old dad is taking care of my mom with Parkinsons. I am at least blessed to live in the same town and to have the privilege to help out. Find out all you can about this disease and keep up with your dad’s doctor appointments and test results. This will help more that you can ever know.

Take care and keep posting.

Mary

[Hunter Bob]

Hi Lori and Mary – I was diagnosed last week with MDS (RARS – Intermediate 1 category). Waiting to see if Ins. will pay for Procrit shots to boost my red blood cells for a short period of time, then they say I’ll have to go into chemo.

I’ve had 2 blood transfusions in 4 months, a liver biopsy and bone marrow test (with add’l platelets given before each procedure). I’m told bone marrow trans. is out of question because of my age.

Any history of how long Procrit works?

Hunter Bob – age 63, MDS-RARS Interm. 1

[Mary4Mike]

Hi Bob,

Welcome! I was surprised to read that you were told bone marrow transplant was out because of your age. They are still telling my husband that he has that option. We were told that as long as you are healthy otherwise, he could still be a candidate.

Where in Michigan are you? We talked to the transplant team at Karmanos in Detroit a couple years ago and our doctor wants us to go back again for an update on procedures, survival statistics, etc. My husband’s sister is a perfect match, but he hasn’t wanted to go that route yet. We haven’t been that impressed with the statistics of survival, but eventually that might be our only option.

Mike took Procrit for a couple of years and then Aranesp. He probably should have stopped it before he did because he never got much improvement from it. Everyone is different.

[Hunter Bob]

Just got the go ahead from the Ins. today to start on Procrit – first shot this Thurs. Read someone’s comment that it just made their mom a little more tired for the first couple of days — hope that’s the extent of it for a reaction. Will get Procrit shots 1 a week for awhile. That’s all I know right now. Feel like I just want to get into a rhythm – forward motion – so I can start feeling better.

Hunter Bob

[nancym]

Hi Hunter Bob.

That was my post regarding Mom’s fatigue. She is going for her 3rd injection of Procrit today. At first she was really concerned about the fatigue. When she spoke to her PCP about it, he told her to rest and let her energy go towards making blood. I will say her skin tone is better and she reports her breathing is easier. We hope Procrit is working. I hope my words encourage you and you feel better soon.

Nancy

[Hunter Bob]

Thank you!

Hunter Bob

[Joan2438]

Hunter Bob;

What dosage of Procrit are you getting?
Joan

[Hunter Bob]

No idea – will get the 1st shot today and will be sure to ask.

[jaxem]

lori
check out:
Vanderbilt University Medical Center
Nashville VA Medical Center (Secondary Location)
Stem Cell Transplant Program
1301 – 22nd Avenue South
2665 TVC
Nashville, TN 37232-5505
(615) 936-1803

who knows where it developed but I’m told that "it is a rare occurrence when it develops from chemo and/or radiation". My wife died from this "rare" development and I continually hear cases of secondary cancer occurring. never heard of herbs, vitamins stopping this cruel disease although many patients live with some forms of the disease for a long time. In cases where the disease is life threatening like my wife’s (RAEB), the only "cure" is to replace the blood totally (transplant) using a donor.

Bob
an age of 63 is not too old for a transplant. get a 2nd opinion at an institution experienced with your disease.

[Hunter Bob]

Will be asking Dr. this question, but wanted to put it out to the group:

Has anyone had really low readings of red and white blood cells as well as platelets all at one time? The Dr. says I’m complicated: I have 1% blasts, but all 3 blood levels are extremely low. He’s rated my situation as RARS-1.
Started with 1st Procrit shot last Thurs. – HGB was so low though that I had to get 2 units of blood on top of it.

Any comments?

Thanks – Hunter Bob

[Hunter Bob]

Joan – My 1st Procrit shot on Thursday was 60,000 units.

Hunter Bob

[billboy]

Hunter Bob,

You say your counts are really low / extremely low in all three blood lines. What are your hemoglobin, WBC and platelet counts, specifically? I typically have two counts low, but neither of immediate concern, ie hemoglobin around 10 (I usually get transfused when my hemoglobin drops near or below 8 as then the effects are readily noticed) and platelet count below 50,000.

Also you noted that you got 2 units of packed red blood cells on top of the Procrit injection. Remember that there is only a chance that Procrit will help and that in the mean time you’ll be receiving supportive care – transfusions as required to maintain a reasonable hemoglobin level. Here’s a good link regarding Procrit:

http://www.aamds.org/aplastic/disease_information/qa_library/growth_factors/

[vasikka]

Hi, Forum members.I have actually a question and not an answer. Has anyone out there Experimented with taking EXJADE less than on everyday schedule, would it really make a difference if you have a day off during the week?My husband takes 1000mg/g.d.he is 175pounds.We are worried that it would drop his blood values way down, as he’s platelets are now about 10,000 and absolute whites 0.560 and HGB 9.4 he gets RBC’s every two weeks.He probably has RCMD secondary to post NHL, post autologous stem cell transplant, post Zevalin and numerous other chemo’s.Appreciate some comments.

[Hunter Bob]

Hello – Here’s my bloodwork results on 4/9/09: White blood cells – 2.4; Red blood cells = 2.5; HGB – 8.1; Platelets = 25,000

My HGB is now at 10.3 (because of the transfusion) so when I went to have my next Procrit shot, they said I’d have to wait a few more days (maybe a week), which is understandable.

Just was wondering about all of the bloodwork numbers being so low at the same time because everything I’ve read will refer to one or two being low, but nothing ever mentions if all are low.. . .

[Author]

Posts