Side effects of Vidaza
 

My husband just started the vidaza shots this week, he got shots on both sides on stomach, on each leg, and one arm. They started with the shots in his stomach, he is so sore he hurts to cough, and can hardly get up and down. He is not one to complain with pain, so I was just wondering if anyone else had these problems. He did 72 treatments of dacon, but it stopped working, he asked the doctor to try the vidaza, as the other alternative was the 7 days 24 hours of chemo, infection, and having to stay in hospital a month. He had just been doing the blood transfusions since March, his blast have gone to 25, which some say is MDS others say it is AML, and doctor had given him 3 to 4 months, so we are hopeing that the vidaz will slow it down. He has been in and out of hospital since December, and I have just been completely worn out that is why I have not posted anything. He had a mild heart attack last week. So Neil don't jump my bones cause I haven't posted!

Vidaza intravenous injections
 

Hi Anne,
You know Vidaza could be administrated by intravenous injections - as far as I understand many members of this forum are getting Vidaza directly in the blood. When your husband often get transfusions he could have a port-a-cath inplanted - I have had a port since Jan 2007 without problems.
Kind regards
Birgitta-A

update on vidaz injections
 

Dean, has been recieveing the vidaz injections, he finished his first round Friday. He woke up Saturday, very dizzy, could hardly stand. I thought he may have got up and took some meds that made him sleepy, but he couldn't remember. This continued through out the day. It is Sunday morning and he is not any better he can not get out of bed and his mind is real muddled, I thnik he must have had a stroke or something, I am getting ready to call the ambulance as soon as I hear from the doctor. Keep us in your prayers.

Vidaza
 

Dear Anne,
Hopefully your husband had a strong reaction of fatigue due to Vidaza and not a stroke.
Kind regards
Birgitta-A

Hi,

I hope everythings okay. Maybe it's something simple like his potassium is down or something. My doctor told me that Vidaza can cause poassium, magnesium problems etc.

Good luck.

1 in a 100 side effect to vidaz
 

Well my husband had one in 100 or what ever can't remember the numbers side effect to vidaz, his system shut down. His sugar dropped to 22, his potassium went up 72, at this time he is in critical condition. The doctor said the side-effect was very rare, they were going to put him in intensive care but due to his not wanting any means of artifical support they are keeping him on the cancer floor. The nurse on this floor are angels sent from heaven. They made me go home last nite, we have put everything in Gods hands. From what I understand from the Dr. the chemo attacked his bad cells so bad that there was a toxic reaction, which shut everything down. When I left last nite, they had finally got his sugar to hold steady for 3 hours, they were still trying to get his potassium down and it had went to 62, they gave him a type of medication that flushes it out thru the bowels and were going to give him another dose as there had been no results from the first dose. His speach was not as slurred , but his mind was still in and out. Just got off phone with nurse, the second dose of medication did not work, and he about the same as he was last nite when I left. I will try to keep you all posted , thank you for your thoughts and prayers.
Anne

Vidaza
 

Dear Anne,
How terrible with so serious adverse reactions to Vidaza! I have read several hundreds of abstracts about the drug but never anything about this kind of toxic reaction.

Good that your husband is getting best possible care!
Kind regards
Birgitta-A

update on Dean
 

Yes Bridget, this is a 1 in a million reaction. His doctor said that it is so rare that it is not talked about. They finally got his potassium down to 5.2, which takes the pressure off his heart, and his sugar is holding steady. His mind has not come back yet he will be fine for a few min. then he will not know where he is , etc. He started running fever late yesterday and they have put him on an antibodic. They did a cat scan on his head but it was negative. The doctor said it would just be wait and see , he is not out of danger yet. Just talked to nurse he had a fairly good nite. On my way to hosp. just wanted to thank everyone for their prayers.
Anne

Confusion
 

Dear Anne,
Good that the cat scan was OK! You know almost everything can make us confused. If our patassium is too high, our blood suger too high or too low or if we have fever we can be confused. Hope Dean is getting better each day!
Kind regards
Birgitta-A

Dean is back to normal
 

Hi everyone,

I am so happy my husbands mind came back late yesterday! He is almost his old self! They will start with the physical theraphy today to get him up and hopefully walking.

A strange thing happen, the hospital we go to list current medications on the internet that a patient is taking. When he got out of hospital in May they had put him on Naproxen, and tylenol, my daughter pulled up his medical records, on 6-4, his medicine was listed with these two drugs, but on a update the day he started the vidaz, these two medications were not listed, I always take a copy of medicines with me when we go anywhere, dr., hosp., clinic etc. When the pharmacy came down to explain the new chemo she gave us a paper with what not to take, I informed her that he was taking the Naproxen and tylenol, which had been prescribed for the fever, sweats and chills which is a part of the advanceing of the cancer.

I fill there was a mistake made somewhere and that the combination of the chemo and those drugs gave my husband the reaction and almost killed him.

I will be taking copies which I printed off the computer to hospital today! I think someone has some explaining to do!

So please make sure that when you are taking chemo, that it says it is alright for you to take the medications you are taking, don't ask just once ask twice, make sure you get a positive answer from the doctor, and the pharmacy. Our hospital keeps an updated record on line, so I was able to copy and print out both updates on his meds.

Please be careful with your medications and always ask more than once about something you are not sure of.

Thank you all for your prayers.

Anne

Vidaza
 

Hi Anne,
Wonderful that Dean is OK again :)!

You know Naproxen and Tylenol are both drugs that can decrease the counts - Naproxen can make the white blood cells disappear. I don't think anybody with our disease should take any drugs for fever and other similar symptoms. The drugs can be toxic and we have to know if we have fever perhaps due to an infection that should be treated without delay.
Kind regards
Birgitta-A

update
 

Well, sometimes you get your hopes up and fool yourself. Yesterday the dr. informed us after our discussion of the naproxen and the chemo, that she had did research and decided that the fungus drug they had put my husband on for his lungs Voriconazole, was what caused the problem. I think they are just grasping for straws. They had given him 2 units of blood the day before, and he needed 2 more units yesterday. He seemed to be lots weaker and would not eat at all! Then last nite he told his daughter that physical theraphy had not come by and he would see them today. Physical theraphy did come and had him set on edge of bed, helped him do some excercise with his legs. His son came by and was talking to him about some work we were bidding on and something upset him, and next thing we knew was nurse was coming in saying whatever you are discussing, stop now , monitoring has called and his heart rate is up to 180. They still have not taken the catater out and it is driving him insane. I was able to get him to drink a boost drink, and several diet ginger ales. Then at 6pm nurse takes sugar and it is up to 280. The nurses did help him get up to go to bathroom, but he is having so many stomach cramps, he was up and down about 5 times, with only one result, alot of it is just gas. He will not let the nurse give him a bath, and my husband is a big man 6ft 2 and about 280 lbs. It took me about an hour to get his bath and wore me completely out as I am sort of on the small size, and have copd. Hopefully today he will let the nurse assist me. But now I am worried again about his mind, and his not eating. They are not giving him any nutrients.
His kids went home yesterday as they live 4 hours away, and feel he is out of danger, it is nice to have the quiet at the house, but he wants me there all day from 8 till 8 which is wearing me out. I try to catch cat naps when he is sleeping, but as everyone knows, that is almost impossible in the hospital. In just a short while he has developed some bed sores, and is real galled between his legs, I called the nurse and she saw it and said she would put in an order for wound care, but it would be today before they would get there, she gave me some medicine that looks like the stuff you put on babies for diaper rash, that white pasty stuff.
Well it is time to shower and get to moving he will be worrying cause I am not up there.
Thanks for your prayers and listening to me.
Anne

Vidaza
 

Dear Anne,
Too bad that Dean still has so severe symptoms but hopefully he will recover in a few days! Good that they control all tests so often.

I never really believed that the reaction was due to Vidaza. When they said 1 in 1 milj patients who got an adverse reaction like that I thought that though Vidaza was first synthesized in 1974 1 milj patients have not yet received the drug.

Perhaps they think it is too early for nutrients when his blood sugar is moving between 22 and 280.

Don’t they have any special mattresses that contain foam, air, gel, or water that helps to prevent pressure ulcers:
http://seniorhealth.about.com/librar...lpressure3.htm
Kind regards
Birgitta-A

they sending him home
 

Hi everyone,

My husband got 2 more units of blood today which makes 6 i think gee my days are running together, this week. The physical theraphist came in and tried to walk him with a walker he did pretty good.

The dr. came in tonite and said that he would probably go home tomorrow as he could go to the clinic and get blood, that he didn't need to be in hosp. for that, so I guess everything is ok now.

His eating is maybe one or two bites a meal, but I have been getting him to drink one boost drink aday, so hopefully that will help.

Tomorrow is Friday, they said they were sending him home with home health care, don't know anything about it, I just can't imagine they can get someone to start on the weekends. If he needs blood this weekend the clinic want be opened, I just don't understand these people.

I know that the amount of time they gave him in May is closeing in, I just hoped they had been wrong.

Well I will have my plate full, when I get him home, but will try to post as much as possible.

We will be seeing his regular doctor some time next week, they are to let me know tomorrow.

Thank you all.

Anne

I can't speak for your specific nurses, but my home care nurses here were WONDERFUL, and visited patients 7 days a week, including Christmas Day and New Years. They realise that when you're sick, it doesn't matter what day of the week it is. But my home care nurses were not allowed to give transfusions or blood draws (though IV drugs were fine) so I had to go into the day unit for those.

The hospital should give you a list of emergency numbers to call if anything goes wrong - numbers for M-F 9-5, numbers for the evenings & weekends, and numbers for emergencies. If they don't offer these, ask for them! I kept the list in my handbag at all times and made sure my fiance had a copy, too. Luckily we only had to use them a few times.

didn't get to come home
 

Well he didn't get to come home his platelets were low and so was his blood. He got 2 more units of blood and one of platelets. He is still feeling very weak, dr. said it would be pertaining to what his counts are today as to if he would come home or not.

His coloring looks lots better, but he had said the day before that he didn't feel like he was ready to come home.

Well time to get ready and get to hospital, he will be calling to see where I am. Yesterday it took from 10 to 4:30 to get the blood and platelets in him and poor thing he gets lasix with them so it is potty every 5 min. thank god for urinals.

Thank you all for your replies and the info about home health care.

anne

Thinking of you
 

I am glad you are going to have some help. I hope you are making sure you get some rest and you are taking care of yourself. You will need to stay as strong and healthy as you can to be able to continue to give him the help he needs.

Anne, you and Dean are in my prayers. No one knows what you are going though but these wonderful people on thie forum. Just keep putting one foot in front of the other and pray that it will get easier. My husband was diagnosed with MDS last 6/30/09. He has good weeks and not so good weeks. We did not think he would be here this year at this time, but only the good Lord knows what is planned and we just have to keep going as long as we can. The last couple of weeks have not been good but he seems to be perking back up. We will keep you in our hearts and prayers.
ann

thank you Diane D & Ann wife of HenryThank
 

Thank you Diane D & Ann, it is hard to take care of myself as Dean will not let the nurse's take care of his needs, such as bathing and helping him to the bathroom if he can make it. When he messes up the bed he doesn't want me to call the nurse cause he is embrassed. I guess thru the years I have spoiled him! I have tried to explain to him that the nurse's are use to this and that he can't help what happens, but he gets so ashamed that I just change the bed several times aday and clean him up. He is a big man 6'2 and weighs about 280, and I am only about 120, and very small. I keep telling myself everyday that I am going to make him let the nurse do the bathing etc. but I hate to kick him when he is down.
The nurse made me go home yesterday, as I was completely worn out, so I finally left at 4pm instead of 7pm.

He started having diearrea, and the toilet was full of black liquid, they think he may be loseing blood due to an ucler which he had several years ago, and was bleeding. They ran a tube down his noes and got stuff out, then the gastrologs came in and said they make do a upper gi scope on him Monday.
They have put him on clear liguids again, not that he was heating much anyway, with the exception of breakfast. I have been making him drink the boost drinks at least one aday, but now that is out. They are not giving him any extra fluids or vitaims. He has now been in the hospital a week. He can only have ginger ale and water to drink and he is not much on drinking water.

Today is fathers day and where are his kids, one has gone to the beach and the other is home 4 hours away, no reason that either one of them couldn't have been here today! They both know what is in his will and ever since May have been argueing to me over stuff, or going to him and saying that the other said so and so. At the time he made the will the lawyer was in a hurry and things were not as specific as they should have been. We have a landscaping business and alot of big equipment , as we do grading and planting on new jobs, we do not do any maintance. I don't want to say anything to him because he needs to use his strength to get well, but his kids are driving me insane. Well that is enough of that just needed to get it off my chest.

Gonna go get my shower and get up to hospital, hopefully today will be a better day.

Thank you all again for all your thoughts and prayers.

Ann

Anne,

The combination of hardships you're dealing with is more than anyone should have to face.

Taking care of yourself is so important. I hope you find a way to get rest more regularly and not stretch yourself to the point where the nurses have to send you home again. It's not selfish and it's not abandoning Dean for you to take the necessary breaks from your time at the hospital. It's for his own good that you take care of yourself. A frazzled, overtired wife with nerves on edge isn't what he needs.

Your caring and dedication are apparent to us and he knows it too. You are there to comfort him, keep an eye on his care, and talk to the doctors with him, but you just can't be there every waking hour or take over for the nurses. You might want to read or post in the Getting through the day as a caregiver thread.

It's good that you track his treatment and medications and can help him cope but don't expect to do more physically than is possible. I think you'll need to let the nurses to do more of his physical care. Yes it's embarrassing to need help with cleaning and the bathroom but maybe it will take the sting out of it once he sees how matter-of-fact the nurses are about these things. They do it all the time and they are good at it, both thorough and efficient. If the hospital has both male and female nurses available, perhaps he could indicate a preference. Think of it this way: you want to help Dean but you need the nurses to help YOU.

You said they aren't giving Dean fluids. Is he getting saline or other fluids by IV? If so, he can get all the liquid he needs that way, so it's OK if he drinks from a cup only when he wants to. If the doctors want him to drink more than he's been willing to, you could ask the hospital nutritionist to stop by. In my experience they always come with ideas you haven't thought of yourself.

Father's Day must be bittersweet with the kids' reacting the way you've described, especially if they are usually with him for Father's Day. Are they adolescents or adults? Young people often see the world through a self-focused point of view, wondering how things will affect them before others, and being less able to face and comfort someone who is ill. At any age it's scary when your parent is seriously ill. They can see the strain on you too, and that has its own effects. I don't know the answers but it's good that you are willing to talk about it.

With all the ups and downs of MDS there are bound to be worse days and better days each week. I hope you'll be able to notice and appreciate each day that is better than the previous day.

4 units of blood and 4 of platelets
 

Yesterday was a very bad day, emotionally, Deans children are in there 40's and neither showed up for fathers day. One was right here in town and getting ready to go to the beach, the other 3 1/2 hours away. His kids especially his daughter has always made a big deal of fathers day and she finally called about 3pm. I was really surprised that she did not come knowing that this would probably be his last fathers day. His children are already argueing over his will, as it was not stated correctly, it was stated as the material things in one town went to one and the things in another town went to the other. I would like to just slap them both, ever since his blasts went up, and the dr. gave him 3 months they have been at it. Dean owns alot of big landscape equipment, property, since his son had always worked with him, he thought he should get the equipment that was in one town and the daughter the equipment in another, now it is don't bring anything to one town cause the other might get it. This week it was an arguement over a old car, that if it is worth $1,500.00 you would be good to get it. The son was stateing to me that he had a notion to drive the car down here, cause he didn't want his step sister to get it . He is getting 4 trucks, 3 skid-steers, and 2 trackhoes. They are both getting property that is equal in selling price. Being as Dean and I are not legally married but have been together for 20 years, I opt out of having any of this, I did not want to fight with his kids and his real wife, even though they have been leagally separated 20 years. I know it is gonna be a mess but had no idea that it would start before he was dead. I have always heard that when someone passes the argueing starts, heaven help us, cause I am not going to be mixed up in this. His son has worked with him all his life, but work has quit since December and jobs are just not out there. One did cross us and I did the bidding on it as I have always done, and the son went and talked to the people and ended up loseing the job. He has never had any interest in the company and now he is just drawing his unemployment and having a vacation. It really hurt his father as the company is very old, Deans father started it and He had hoped that his adoptive son would contuine with it. I think he thought once he wasn't active in it the son would step up.

I was sitting on the bed talking to Dean and he out of the blue ask me was this it , meaning he was dying. I have never seen him cry and the tears were just rolling out of his eyes. The nurse had just stepped out of the room, but she was able to hear the converstation. I assured him that no he was not dying, told him did he see the family gathered around his bed. Later the nurse came in and I ask her to reassure him, and she told them that they had lots of patients worse than him and that they would be going home, just like he would! Then when I gave him his fathers day card from me, the tears started rolling again, it just broke my heart. After talking with him and the nurse, finding out that he was so nerveous and anxious, the nurse and I figured out that alot of it was probably due to the fact that for the last 20 years he has been taking .5 mg. of xanax, and that since he had been in the hospital for a week that had not given him anything. She immediately paged the doctor and they gave him another drug, can't remember the name, but after 30 minutes he did not seem as anxious. She told us the doctor thought that maybe the combination of an antibaterial drug he was talking and the xanax could have been the problem and that is why she did not give him the pill.
They are trying to get his platelets and blood built up so that they can do an ediscopy today, as his stools are still black and the medication is not helping the diarrea, where ever the blood is coming from it is coming out as fast as they put it in.
Don't know if they had to give him any more, they were starting the second set when I talked to him at 8 pm last nite.
No I am not taking care of myself and know I need to, the nurse is really on me but I find it so hard to leave him. My neighbor brought over a book last nite and told me to read it, it is called Surviving Cancer Emotionally, I will take it with me today and start on it.

Just got off phone with nurse, they don't have labs back yet, but she told me sometimes they will do the procedure and be giving plateletts at the same time. I am hopeing that this will be the case.

Thank you all for letting me get this out of my system, and for all your prayers.

Ann

day 9 of hospital
 

Well yesterday they pumped dean full of platelets and took him down for an endoscopy, they found some small ulcers, but nothing major, he still has loose bowels and they are black, and watery. Came home from hosp. at 7pm and still knew no more than I did when I went yesterday. The good thing is they did not give any blood yesterday as far as I know. Had talked to him at 9pm and they had just drew blood. Where ever the blood has come from it may have stopped. Hopefully the doctor will give us more info today.

I hope they start physical theraphy back today and get him out of that bed, I am putting medication on his bed sores and they seem to be better.

Well need to get to moving, he will be calling wanting to know where I am.

Thank you all for your ears, and prayers.

ann

Ann,

You are a good woman, and an incredible caregiver to your Dean. He knows it, and you do too. But be sure to take some time for yourself, even if it's just a fifteen minute walk around the hospital parking lot every afternoon, or ten minutes reading a 'beach blanket book' in the cafeteria.

Stay strong, and know that you are doing all you can, even if others around you seem not to. Keep well, and know we're all rooting for you and Dean.

plateletts not working
 

Well thought dean was getting better, but he had a turn day before yesterday, they can not stop the bleeding which they now say is diffently coming from ulcers. The platelets they were giving him are not working, they are trying to find a better match, which they say takes 3 to 4 days. His bowels are moving now more than ever 6 to 7 times aday with the black liquid stool. They had changed the meds for the ulcer to pills but started back a continuous drip thru iv yesterday, thank god he has a port. They gave him vitamin K, 2 units of blood, platelets, and are back to giving him fluids thru iv, they said even though he is drinking, he is on liquid diet, he needs more. This will be day 12 for us in the hospital, my son brought his kids to see him yesterday as Dean loves them so much, they brought him a card, and little plaque, the tears started rolling. He is so emotional, but the visit did him good. Haven't heard from Deans son in a couple of days and he kept asking me if I had heard anything, so when I got home I called him and told him to call his father I was so mad. The day before I called his daughter and told her to call him. This is so sad, why do kids do this. Right now he needs the emotional support of all his family. If anyone has any ideas about anything that could help, I would be glad to bring it up with the doctors. I had asked for them to do the lower gi but due to the low platelets they couldn't. They do not want to stop the old blood from coming out so they will not give him any meds to stop the diarrea. Over a year and half ago when they did a bone marrow test, they hit a nerve and Dean has never got all the feeling back in his rectumn so he does not know where he goes, he gets so embrassed so I try to be there as much as possible to clean him up. Left earlier than usual day before yesterdday and when I went to give him bath, he has mess all over him, the nurses half way cleaned him up. I know he want allow a sitter, because the only thing he has left is his modesty. Please keep him in your hopes and prayers.
Thank you
ann

Dear Anne,
 

This is so hard to go through and I know how you feel. We were where you are last year just after we got the diagnosis of MDS. I did not think my husband would get out of the hospital alive but he did. We give the glory to God and the wonderful doctors and nurses. I think most husbands want their wives to "take care" of them and are embarrassed to have anyone else see their weaknesses. We finally got a wonderful male nurse who took no "guff" from the old geezer and told me to go home and get some rest. I felt so guilty about doing so, but I did and slept better that night than I had in over a week. When I got up to the hospital the next morning, my husband was all smiles and was feeling so much better I just had to cry. He didn't understand my tears, but I was so happy to see him sitting up in the bed, teasing the nurses. I pray for a turn around for your Dean and will keep both of you in my prayers. May I put him on my church's prayer chain? I believe that all the prayers lifted up are heard and the more the better.
I don't think my husband will die from MDS but from his congestive heart disease. He had to have 2 liters of fluid drained from his right lung yesterday and is feeling so good today. We went out to lunch today and he had such a good appetite. I am so thankful for the small steps we take these days. 2/3 good days in a row are such blessings. We have been married for 54 years and he was my first boyfriend. I was 12 and he was 14 when we played sandlot baseball together. We married when I was almost 18 and he was almost 20. I worked and put him through college and we have had a wonderful life. Thank you Lord.
Keep me posted., I send my love,
ann