Dad refuses Vidaza injections

[bebop]

at first with Dad they would wait until he got down to like 7 but then they did it at just over 8 to try to keep him going a little longer in between. also at first he felt better after a couple of days getting blood, but it did take a couple of days.

[milliken2]

Hi Deeno;

I am fairly new to the forum - but have been an RN, BSN for almost 40 years. In my opinion - regarding the premedications - your Mom can always give him a Tylenol before he leaves - that way it is in his system before the Transfusion starts. My husband is on Dacogen - and so far has had 2 five day sessions - he is on Off Week 2. His levels keep dropping. We were told that it takes betwen 4 and 6 sessions to see if the drug works - and the same goes for Vidaza. He gets blood at least once a week. And this week, he will be there twice - got platelets yesterday - and will get 2 units of blood, followed by Desferal (chelating agent to get rid of the excess iron) tomorrow. Our onc/hema transfuses at 8.5 or below. I can really tell the difference in Earl when he gets below that level - he sleeps a lot more, and his appetite drops.
I have always given Earl his injections here. He used to be on Arixtra daily for his blood clotting auto immune disease - Antiphospholipid Antibody Syndrome - but since the dx of MDS - his platelet levels have been so low, he hasn't had any for almost 5 months now. I would think your Dad would qualify for a home health nurse. That can help in 2 ways - both to give injections (Procrit) but also to draw blood so that he wouldn't have to make the trips to the hospital. Obviously, from what I have read - safety is an issue - and one that should be mentioned when you are talking to his Medicare provider.
Also - if he goes to the same facility for his transfusions - check into a permanent blood band. This will have his ID on it - and blood type. He will still have to be cross matched prior to transfusions to make sure there is nothing in the blood that would cause an adverse reaction or anaphylactic shock. Earl has one, and it makes things go a lot faster.
I wish you luck - but I also agree with the quality of life - and it may be hard to accept what your Father wants - but know he loves you.

Beth

[deeno]

Millikens2 -Thanks for all the helpful information and the encouragement.
It's so nice that you can do the injections yourself - what a blessing!
How often does your husband get a CBC? Does he have to go to the hospital/clinic for blood tests and blood typing before a transfusion? Or do you do that too and take it to a lab for processing?
I hope the Dacogen starts working soon!

When my Dad was in the hospital, Medicare came and talked to him to see if he qualified for homebound status, and they disqualified him because he said he goes to the grocery store with my mom. He used to go and hang on to the shopping cart like a walker. But he hasn't been since he got out of the hospital and likely will never go again. I'll talk to him about getting his status changed to Homebound.

Bebop - when my Dad's hgb was 7.8 it said C-critically low. So your Dad's doctor must have been willing to let him get critically low (under 8.0) in the beginning. Did your Dad get CBC's every other week in the beginning?

It sounds like thresholds for getting a transfusion are different....and there's the quality of blood issue as well. If my Dad really doesn't think they helped, maybe he can wait until his counts are critically low.

Happy Friday Everyone!!! One week from now, I will be on a plane to see my Dad - Yay, I can't wait to see him!!!

[milliken2]

Deeno;

Earl has his labs drawn twice a week - usually Monday and Thursday. I do not do them here - the home health agency that gets us the supplies to flush his PICC line refuses to send me the needed tubes, vacutainer, etc. - since they want their own RN to come in to do it. Besides that - the hospital where we go is only a few minutes away from where he gets his chemo - and this way - them using the same diagnostic machines - you can rely on the levels. I would gladly do it - I asked them if they were hiring - and I would only have Earl as a client - but of course, they refused. Either way - Medicare is making out - they would pay the agency $120.00 a day to come in to flush his lines, and an additional $240.00 the day he gets his weekly dressing changes. Right now - I am doing it, and have had no problem. More importantly - Earl is more at ease with me instead of a stranger. So - if you look at the final figure - I am saving Medicare $1040.00 a week - and have been since Earl had his first PICC line put in last October - the one he has in now is his third - and there is no sign of inflammation or edema at the site. And the nurses where he gets his labs done and gets the transfusions say it is in good condition too. But, of course - we have a co-pay of $15.00 every time he gets a transfusion. The way I see it - they should disregard the copay since I am saving them a ton of money - but of course - they won't do that.
I am so glad you are getting to see your Dad - take lots of pics, do a journal while you are there if you aren't already - and record him telling you his experiences if he will let you. It makes it easier when the time comes - you actually have something from him. Part of my nursing experience was working hospice for quite a while - and it helped keep the families together and eased their pain. Just a suggestion.
Usually every hospital has a patient advocate - sometimes a social worker - and you could talk to them about your Dad needing home care. Remind them - and I think I am right - that he doesn't want to look like he is 'dependent' on anyone. I know Earl hates having me to do the things he used to do - and doesn't admit to his limitations. Pride can sometimes really be the downfall. Either way - good luck, and enjoy your visit.

Beth

[bebop]

before his dx he was once a month on blood testing I think but as soon as he went to see the hemo it was pretty fast that he ended up once a week for blood then his plts got really bad so they did them 2 times per week. in the end nothing did any good. like drinking water and peeing it out. sorry for the graphics there.

[deeno]

Beth & Bebop - Thanks for the info regarding hgb levels at trx.

And graphic is good, Bebop! My heart goes out to you, I know you have "been there done that" which I am only beginning. It is a great help to have your experience here. And Beth, it's so wonderful to get insight from an RN,BSN.

I've been researching Thalidomide since it is oral and has really seemed to help Birgitta and Kirby Stone.

From Birgitta: - At dx 2006 my HGB was 7.6. I started at once with blood txs and received 142 units of blood during 4 years. My dysfunctional platelets decreased slowly and May 2010 they were only 22. June 2010 I accepted Thalidomide 50 mg/day + Prednisone with positive response. After 4 weeks my platelets were 43 but my WBCs decreased so I continued with Thalidomide 50 mg 4 caps/week + Prednisone 5 mg/day. Since Sept 2010 I have not needed blood txs.

My latest counts (yesterday) were: HGB 12.4, WBCs 3.9 and platelets 93.
Birgitta - Do you think it was the 142 units of PBRC's, or the Thalidomide that contributed to your improved counts? Do you remember what your hgb count was when you began taking Thalidomide in June 2010?
It's really exciting that your counts are still so good two years later!

Are myeloma cells and blast cells the same thing? Thalidomide works by slowing the growth of myeloma cells and my Dad has excessive blasts - so I'm thinking this might be something good.
-deeno

[Birgitta-A]

Hi Deeno,
During May 2010 my HGB was about 8.5 before 2 units of red blood cells once a week. I am very afraid of adverse reactions so I only accepted supportive therapy (txs, Neupogen for low WBCs and iron chelation) until my dysfuctional platelets decreased to 22 and the ferritin level increased to 5600.

Then I decided to try Thalidomide and Prednisone. These drugs (not the txs) have had good effect on the counts. A little more than 30% of MDS patients respond to Thalidomide and if the drug is combined with Prednisone more patients respond.

Today they don't do any studies on Thalidomide as single drug - they now study the newer drugs Revlimid and Pomalidomide (not approved). They don't give neuropathy as often as Thalidomide.

Blast cells are immature white blood cells. Myeloma is cancer of the plasma cells. Plasma cells are white blood cells that produce disease- and infection-fighting antibodies in our bodies.

Thalidomide works in many ways - some of them are probably not yet discovered. The drug inhibits the cytokine Tumour Necrosis Factor-alpha (TNF-alpha) and is anti-angiogenic – that means that the growth of small blood vessels is inhibited so tumor cells can’t grow so fast.

Kind regards
Birgitta-A

[deeno]

My Dad has had the worst hip pain ever, and it's from his "good hip". He says it's worse than the back pain he had before and after his spinal cord surgery for cancer.
He said last night it was so bad that he was ready to slit his wrists. Yikes!
Tramadol every two hours is finally helping. My mom wants to go to the ER (it's Memorial Day). I researched the forums for joint pain and found:
-could be due to inflammation & try Claritin,
-part of MDS/AML, but no one knows why,
-most people use painkillers despite their adverse effect on plts, and
-part of the end times - hopefully not, since we are just getting started with 2 Aranesp inj so far.
In fact, my dad thinks it's the Aranesp causing his joint pain, since he was fine before he started injections.

Does anyone else feel that way? Any other theories or treatments for hip pain?
I'm hoping it leaves as suddenly as it came! Thanks for any advice!
Update: His terrible hip pain is gone! -Strange!

[Chirley]

Hi, I'm sorry you're Dad is in pain.

My only experience with pain like this was when my copper level was really low and I was being given copper infusions. As the copper was starting to work and the bone marrow started regenerating, I got joint and bone pain. It started as a tight cramping feeling in my lower back and spread to other areas including my sternum and base of skull. It wasn't very pleasant but only lasted 24 hours the first time and 48hours the second time.

I understand that people who have Neupogen and Aranesp can also experience this pain.

I tried to look on it as a positive thing because it meant my bone marrow was responding. (pain killers were still welcome, the doctor ordered Endone tablets).

Regards

Chirley

[deeno]

Chirley - Thanks so much!! What a great way to look at the pain - that it could be because the Aranesp is working. Nutritional deficiencies like copper are on my list to ask the doctor. We go tomorrow afternoon - I can't wait!!

Dad had another terrible night: the pain moved down into his lower leg and he said it was a nine or ten pain level during the night.

Chirley, thank you again for sharing. Somehow, knowing that the pain is possibly doing good makes it so much more bearable!

[Birgitta-A]

Hi Deeno,
As Chirley wrote Aranesp can give joint pain: http://www.chemocare.com/bio/aranesp.asp

Hope the pain in your father's lower leg will disappear as the hip pain did. Did the hip pain start directly after the Aranesp injection?
Kind regards
Birgitta-A

[deeno]

Hello Birgitta! Dad's pain became severe about 48 hours after the second Aranesp injection. Pretty sure it's the culprit, but we'll see what the doctor says tomorrow afternoon. Thanks so much for the Aranesp link

[bebop]

I don't remember if Dad had pain after his arensp shots or not. he really didn't have pain that I recall. or he just didn't complain much.

[deeno]

Found out that Dad’s pain was due to sciatic nerve pain from a ruptured disc and NOT Aranesp. But since Arenesp isn’t working, and Dad doesn’t want it, the dr decided to discontinue it. He asked my Dad to come in every two weeks for a CBC test.
I think the dr was irritated, because when Dad said he wasn’t sure he could get in that often, Dr told him he could write hospice orders right now. Dad said he wasn’t ready for that yet. Although I was talking to someone who said you can still get transfusions with hospice status.

I asked about Thalidomide, but when the dr said it would bring his counts down and he would have to get more transfusions initially, dad said no. He doesn’t want to do anything except transfusions, and he wants to limit those too.

Bebop, I’m so glad to hear that severe pain wasn’t part of your Dad’s treatment. Your experience means so much to me. If my dad could just enjoy a low pain, peaceful, and sedentary life for the remainder of his time, he would be so happy!!!

[bebop]

Dad never wanted anything other than transfusions. it was scarey but it worked for right at a year. we found out he had the mds in April 2010 and his platelets were low but not enough for transfusions of those until October that year. once those started they were frequent to more frequent. 2 times a week at least. not trying to scare you hon just what we went thru. I do understand him not wanting anything further. Dad was 80 at dx and he was looking forward to going to be with the Lord. I am here for you anytime!

[deeno]

I haven't been online in quite a while - my Dad settled into a routine of CBC tests every other week, resulting in trx @ 1x/mth. Then he had a few hospital visits, both MDS related, and now he decided to try Vidaza!

Bebop - your last message was spot on - I'm excited that my Dad is at least going to try - but at 80 yrs old, I can totally appreciate being ready to meet the Lord!

Anyway, I'm going to start a new thread and try to keep up with the success or failure of Vidaza for future readers.

[wilmasdaughter]

My mother is 89, dx with MDS about 16 months ago. So far she has relied on Aranesp and B12 shots, occasional transfusion. They have mentioned Vidaza, but she said she doesn't want to go through the process. However, one time in a particularly vulnerable moment, she said to me: "If it comes down to whether I live or die, I think I'd take the Vidaza." So as everyone else has said, it's totally up to the person with the MDS.

Take care -- and come to terms with the wishes of your loved ones. I know it's hard...

[bebop]

hon I am so glad he is going to try something at least. Dad never would do anything more than transfusions. keep us posted hon!

Originally Posted by deeno

I haven't been online in quite a while - my Dad settled into a routine of CBC tests every other week, resulting in trx @ 1x/mth. Then he had a few hospital visits, both MDS related, and now he decided to try Vidaza!

Bebop - your last message was spot on - I'm excited that my Dad is at least going to try - but at 80 yrs old, I can totally appreciate being ready to meet the Lord!

Anyway, I'm going to start a new thread and try to keep up with the success or failure of Vidaza for future readers.

[maria&lola]

Good luck with the Vidaza! Hope he responds.

Did you ever check to see if he qualified for home health care?

[deeno]

Hello Everyone,

Dad quit the Vidaza after the first round because he ended up in the hospital in bad shape. He had a bit of relief at home until he experienced stroke symptoms and learned that an earlier fall caused slow bleeding on the brain.

He is now stable and on the rehab floor to try to get use of his left side back. The neuro-surgeon said the blood would eventually slide away (?), and thankfully there was little brain damage! They are giving him a lot of platelets, keeping his numbers in the 30’s instead of his usual 15’s. And he got a Picc line to make transfusions easier.

Had another CT scan and dr said he is still bleeding but barely. And his MDS doc is concerned that platelet therapy is not working well. But he is making slight headway with PT.

I’m trying to find out how long it takes for the blood to leave the brain, and exactly how does that happen? Or can a MDS/AML patient even heal from brain bleed? I can’t seem to find any answers on the web, everything is geared toward stroke-clots or injury-heavy bleeds. Any info would be appreciated….

Ativan lists decreased blood platelets as a very rare side effect. Does anyone disagree? Dad keeps asking for it to control twitching limbs. He is scared, but I told him to look at the twitches as the brain trying to re-connect with his limbs – probably not medically true, but it sounds good!

Maria&Lola- My mom has promised to take all the help they offer her. She likes his case worker. I just hope he gets to come home….even if it is in a wheelchair……sounds safer actually.

Each episode becomes my Dad’s new reality. But I always remind him that it doesn’t take away the wonderful life he already had – and our family witnessed and shared his great life – in some ways MDS/AML has brought us even closer. My best to all!

[bebop]

oh dear you are really going thru it with him. praying for you and your family hon!

[deeno]

Looks like Dad's going to be wheeling around the house instead of walking

Does anyone have a favorite brand or model walker with a seat? I'm thinking if he could also scoot sideways, he might even be able to fit it between my mom's furniture A full size wheelchair wouldn't even fit in the bathroom.

I guess the alternative is assisted living.....not our first choice....he's in the rehab hospital until after Thanksgiving at the earliest. The nice part about rehab is they take really good care of his blood counts. And Dad likes working out with PT's. Bad part is the food.

Bebop - Any scooter ideas?