Dad refuses Vidaza injections

[deeno]

I have been reading a lot of MDS threads, but this is my first post.

My dad, 79, was diagnosed late in March with MDS RAEB-t when he went to the emergency room for uncontrollable bleeding. The week before he had a mysterious very high fever and weakness, now we know it was part of MDS.

In the hospital, he received blood/platelet transfusions, and a BMB. The specialist wanted to start him on Vidaza right away, but my dad refused. He simply is unwilling to go to the clinic for Vidaza/Neupogen transfusions, claiming “Quality of Life, and that he doesn’t want to spend a fourth of his remaining life in a medical clinic”. He is not very mobile, it’s about a 45 minute drive, my mom can’t drive him, and I think the thought of getting there 5 consecutive days overwhelms him.

In 2008 an operation to remove a tumor on his spinal cord left him barely able to walk, yet he has a nice peaceful sedentary life by the beach, but the doctor strongly wants him to start the Vidaza. Reading the threads, I’m afraid that the Vidaza will make him worse, and that he won’t ever recover from the setback, although plenty of MDS bloggers seem to have trouble with Vidaza initially, then it starts working.
It’s so hard to know what’s caused by MDS transforming to AML vs side effects of Vidaza.

I would love to hear from bebop, and anyone else with thoughts on not choosing treatment. I guess he would receive palliative care. The doctor talked him into starting Vidaza once, but my dad cancelled at the last minute. I’m flying in for his next doctor’s appointment.

It’s very sad and discouraging, but at the end of the day, it is his choice.
With prayers of thanks for all the forum posters before me - deeno

[Birgitta-A]

Hi Deeno,
Has your father's doctor not discussed the oral drugs Revlimid or Thalidomide?
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006, supportive treatment with txs, Neupogen for low WBCs, iron chelating drugs for iron overload. Since 2010 treatment with Thalidomide + Prednisone with good results

[deeno]

Hello Birgitta-A,

The doctor has not mentioned any oral drugs, only injectible ones like Aranesp and Neupogen, once a week.

I will certainly put oral drugs on my list of questions for the doctor.
Thank you!
deeno

[lindajo]

Vidaza sometimes works and sometimes doesn't. Many forms of MDS never transform to AML. Your father might be willing to start with vitamin B-12 shots. Takes five minutes to get at his local doctors office and might give him some energy. It has helped me tremendously.

There are also Procrit (erythropotein shots) that may be available. Vidaza isn't his only option. Help him to have quality of life.

[Marlene]

I was able to give John his Procrit (arensep) shots at home. Is your mom able to do that for him. The arensep and neupogen are growth factors to stimulate red and white cells and are not usually given daily.

[deeno]

Originally Posted by lindajo

Vidaza sometimes works and sometimes doesn't. Many forms of MDS never transform to AML. Your father might be willing to start with vitamin B-12 shots. Takes five minutes to get at his local doctors office and might give him some energy. It has helped me tremendously.

There are also Procrit (erythropotein shots) that may be available. Vidaza isn't his only option. Help him to have quality of life.

I think my Dad's already transforming to AML - based on the 22% excessive blasts? Although his dr said he was right on the line.

I'm adding B-12 shots to my list, and I think Procrit is the same as Aranesp, which the dr has mentioned.
Linda - thanks for the helpful suggestions!

[deeno]

Originally Posted by Marlene

I was able to give John his Procrit (arensep) shots at home. Is your mom able to do that for him. The arensep and neupogen are growth factors to stimulate red and white cells and are not usually given daily.

Marlene - I'm very impressed that you can give the injections to your husband. Sounds a bit scary.....and I know my 80yr old Mom wouldn't even try!
It's really good to know that home injections are a possiblity, since I might be able to find someone to do it. Was your husband certified as home bound by Medicare?
When my Dad was in the hospital, they wanted to certify him, but because he sometimes goes to the grocery store with my Mom (using the cart for a walker ), they said he wasn't home bound.
Thanks so much for all the information!
deeno

[Marlene]

We had private insurance since John was only 51 at the time. He was on disability from work but not home bound. Not knowing anything about medicare, but couldn't they send a nurse to do the injections?

We had home health care come out to teach us how to do the sub-Q desferal and they also came out to assess him for wound care. Which I found odd since he was going to the doctors at least weekly at that time.

I was very nervous with the whole thing. I learned to do way too much in the way of wound care, hickman care, injections... Lots of deep breaths.

The growth factors could be considered as palliative care. They are not a chemotherapy.

You can do oral B12. About 5000 mcg on an empty tummy once a day. I would suggest the methly form of B12. I would assume they check for nutritional deficiencies already but be sure to ask and be sure to get the lab reports. B12, Folate, copper, iron, b6, vit D and zinc should be assessed.

[usaf1125]

Don't tear yourself apart, it's his decision, there isn't anything you can do unless he has a change of mind. If he says no, then that's it. Don't take any blame on your shoulders.

[bebop]

I am here hon. all I can say is to support his decision and enjoy whatever time he has left. My dad too wanted quality of life. Dad was 80 at diagnosis. if you want you can pm me your number and I will gladly call you whenever you need an ear.

[deeno]

Thanks so much for all the encouraging replies!

I looked up my dad's medications using Birgitta_A's link http://www.pdsa.org/about-itp/warnings.html and other web searches.

Two don't look good for delicate platelets, and I'm wondering how many MDS/AML patients are on cholesterol medicine?

His is Simvistatin, 40mg and I don't think he even needs it since he barely eats any cholesterol, and he weighs a lot less now. He has a good heart, maybe he could take less or stop taking it altogether.

The other one, Finasteride, 5mg, for his prostrate didn't sound good here: http://onlinelibrary.wiley.com/doi/1...2.02851.x/full

His hemo dr is very experienced with MDS/AML and I know he has received my dad's list of medications.

One good thing about this is that I have talked to my dad on the phone more in the last month than the entire last year! We laugh about it,
and he knows I love him dearly .......

[Marlene]

We have friend who's bone marrow became suppressed as a result of statins. It took them a while to figure it out after two BMB they decided it was the statins.

I my opinion, it would be worthwhile exploring your idea of stopping some meds.

[contie]

Hi Deeno,

My dad was diagnosed in November last year with reab 2. He tried the vidaza shot and after just 1 shot he got sick, ran fever and ended up in hospital. So he doesn't get that anymore. He gets 2 blood every 2 weeks and platlets every other time. He's been in and out of the hospital with infections and he gets tired more and more lately. He also gets the procrit shot once every week. I don't see that it helps him much. We just try to give him positive support as much as we can and live day to day. It's hard to watch him lose weight and not look like himself. He loved to dance and to see that he can't do that anymore is just sad. My heart goes out to you, I know what your going through.

[deeno]

Hi Connie,

It is so amazing and comforting to hear from others in the same difficult situation. Thank you!

We've been wondering about infections - they seem to be part of the illness - but we are thinking that since my dad stays home and there are no young children around, he may not be at such a high risk. Although he is grumbling that going to the dr every other week is going to increase his risk.

But I'm thinking that maybe the infections are a reaction to the blood transfusions. Or even the blast cells in the blood.

I haven't read much about family members giving blood to increase the body's acceptance level. Another subject to research. -d

[Marlene]

John's blood products were always leukocyte reduced and irradiated which lessens the chance of infection and reactions. You may want to check to see what his doctor orders. John is also CMV negative so his blood products had to be CMV negative.

[Birgitta-A]

Hi deeno,
You know when the WBCs are very low we can't defend ourself from the bacteria, virus and fungi we all have on and inside our bodies. That's why it is so important to follow the WBCs and the type of WBCs called neutrophils.

If the neutrophils are lower than 1.5 we should take care, if they are lower than 1.0 we should be very careful and if they are lower than 0.5 we should ask for Neupogen injections or a similar drug.

Many members of this forum have neutrophils that function very well and can tolerate low neutrophils but others (like me) should not have less than 1.0.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006, neutropenic fever after three infections 2007, needed Neupogen injections Sept 2007 to Nov 2011. Good response to Thalidomide + Prednisone.

[deeno]

Hi Birgitta-A,
When you write 1.0 Neutrophils, I think on my dads cbc it is called Polys(absolute)? my dad's is .6 and the normal range says 1.8-7.8
There is also a Polys(neutrophils) line that says 23L with a normal range of 45-76. Both his numbers are lower than the previous cbc, however his WBC is the same, 2.8, and although the dr keeps mentioning Neupogen injections, he hasn't started them yet. Thanks for the clarification on infections, and anything you can add on which Polys(neutrophils).

Marene - that's interesting about John's transfusions, Dad is getting one tomorrow, first he has to get typed because it is only good for 72 hrs.
I'll try to get him to get the details for me, it's hard because he doesn't like to ask a lot of questions. I also read to take benedryl. I wish I were there!

Also, I wish I could be there to drive. Apparently the senior public transportation service didn't go well. They were an hour late getting him to his appointment, then never came back. My parents eventually gave up and took a taxi home. My mom is taking him to the hospital tomorrow. Yikes - her driving scares me.

[Marlene]

Sometimes, they automatically give people pre-meds like tylenol and benedryl when getting blood products. In the beginning, John did not need any pre-meds but eventually, he started getting hives and so he had to start taking the benedryl. He never took tylenol though. And with older patients, they may add in a diuretic like lasix to help them offload the extra fluids going into the body with the transfusions.

John always found that he did better when they infused platelets at a slower rate. If it was too fast, he would get serious hives.

Sorry to hear about the transport problems. The last thing anyone wants to do is wait around for a ride when you are not feeling well.

[Sally C]

Hi Deeno,
Regarding pre-meds before tranfusions - Don initially received Benadryl and Tylenol by mouth in the infusion center 30 minutes before the transfusion started. As time went on and he started having reactions they added Solumedrol (a steroid) along with Benadryl in his port and Tylenol by mouth. Our hospital takes reactions very seriously as it could lead to anaphylactic shock although he never went that far. They also infused platelets very slowly (by gravity as opposed to pump) in an effort to keep him from having any reactions. As far as getting typed and crossed before red cell transfusions - Don received about 130 transfusions (reds and platelets). They typed and crossed before every red cell tranfusion. I guess it's an extra safety measure.
Good luck!
Sally

[Birgitta-A]

Hi Deeno,
You are right neutrophils and poly are different names of the same type of WBCs. "Neutrophils are a type of white blood cell also known as polymorphonuclear leukocytes". http://www.medicinenet.com/neutropenia/article.htm

As you can see in the article the Absolute Neutrophil Count (ANC) is determined by the product of the white blood cell count (WBC) and the fraction of neutrophils among the white blood cells. For example, if the WBC is 10.0 and 70% are neutrophils, the ANC would be 7.0. We almost always discuss ANC so you don't have to learn about other ways to count neutrophils.

Your father's neutrophils are fighting infection and getting killed while they are killing bacteria. His bone marrow can't make new neutrophils fast enough. Neupogen could stimulate the bone marrow so it could produce more neutrophils.
Kind regards
Birgitta-A

[Linda Vuong]

Hi Deeno.

I work for The MDS Beacon, a website for MDS patients and caregivers. In addition to articles on new treatments, we also publish interviews with MDS patients.

I've interviewed two patients who chose not to pursue aggressive treatment for their MDS. You can read about their experiences here:

http://www.mdsbeacon.com/news/2011/0...-charity-work/

http://www.mdsbeacon.com/news/2011/0...ive-treatment/

[deeno]

My mom and dad made it safely to the hospital for his 2pts of PRBC's (I'm guessing that's what he received, since he failed to ask any of the questions I sent him, and mom is no better, they promised to send me the latest cbc's this weekend, arrrgg)
Dad did tell me that he had a lot of antibodies from the first transfusions, and that from now on he must go the day before to get his blood typed. My first thought is "OH NO, who is going to drive?? NOT my mom!!)

I learned from researching past posts that blood typing the day before is not uncommon. Regarding antibodies, I liked these links provided by past posts: http://www.cigna.com/individualandfa...s-hw44015.html and,
http://www.pathology.med.umich.edu/b...h_5/index.html

My dad thinks he will be able to go 6-8 weeks between transfusions, but I'm thinking if he has different kinds of antibodies, that his RBCs won't last that long. I guess time will tell....

Sally & Marlene - Thanks for the transfusion pre-treatment info. I was disappointed that my dad didn't give me any details on his regimen yesterday. But I guess I will find out when I go visit the end of May.

This weekend I want to research giving prednisone to treat haemolysis and Thalidomide, which has helped Birgitta_A get off transfusions. I'm so happy for you, Birgitta_A!!

Linda - I enjoyed reading the interviews & passed them along to Dad - Thanks!
~deeno

[Birgitta-A]

Hi Deeno,
You know I had several so called irregular antibodies from start - probably from pregnancies - and always left blood for crosstesting the day before txs. Then I got an injection with some kind of corticosteroid before the txs to try to prevent hemolysis (the red blood cells burst).

You could look at the member Kirby Stone's personal profile and latest posts. He has a severe type of MDS but is managing very well with help of different treatments among other Thalidomide.
Kind regards
Birgitta-A

[bebop]

Dad had to do this also from the beginning due to antibodies. same with his platelets. they get a few people that are compatible and use their blood from my understanding. it takes up to 6 hrs for those donors to give. to me that is amazing that strangers would do that for others. it didn't really affect how often he got blood though. once a week to 10 days for blood and 2 times a week for plts but he was in total marrow failure or aml by that time.

Originally Posted by deeno

My mom and dad made it safely to the hospital for his 2pts of PRBC's (I'm guessing that's what he received, since he failed to ask any of the questions I sent him, and mom is no better, they promised to send me the latest cbc's this weekend, arrrgg)
Dad did tell me that he had a lot of antibodies from the first transfusions, and that from now on he must go the day before to get his blood typed. My first thought is "OH NO, who is going to drive?? NOT my mom!!)

I learned from researching past posts that blood typing the day before is not uncommon. Regarding antibodies, I liked these links provided by past posts: http://www.cigna.com/individualandfa...s-hw44015.html and,
http://www.pathology.med.umich.edu/b...h_5/index.html

My dad thinks he will be able to go 6-8 weeks between transfusions, but I'm thinking if he has different kinds of antibodies, that his RBCs won't last that long. I guess time will tell....

Sally & Marlene - Thanks for the transfusion pre-treatment info. I was disappointed that my dad didn't give me any details on his regimen yesterday. But I guess I will find out when I go visit the end of May.

This weekend I want to research giving prednisone to treat haemolysis and Thalidomide, which has helped Birgitta_A get off transfusions. I'm so happy for you, Birgitta_A!!

Linda - I enjoyed reading the interviews & passed them along to Dad - Thanks!
~deeno

[deeno]

Originally Posted by bebop

Dad had to do this also from the beginning due to antibodies. same with his platelets. they get a few people that are compatible and use their blood from my understanding. it takes up to 6 hrs for those donors to give. to me that is amazing that strangers would do that for others. it didn't really affect how often he got blood though. once a week to 10 days for blood and 2 times a week for plts but he was in total marrow failure or aml by that time.

I am also amazed and humbled at how much strangers give up for MDS patients. I couldn't find out online how donated blood equates to tranfused PRBC units, But if it is 6 hours that should be about 12 pints of donated blood. Yikes.

Bebop - That is interesting about finding a match to source repeatedly for your dad's trx's, I guess I thought the antibodies would be different every time and that is why they have to type him the day before.

Readers: Do you think it is wise to hold out as long as possible before getting the trx, or follow the cbc threshholds? Dad received a trx b/c his hemoglobin went from 8.9 to 7.8, he claims that he felt the same as always, no shortness of breath, just sleeps alot. He wants to insist next time that he wait until he feels bad. When he tells me this I think he's practicing on me, before he stands up to his dr.