Side effects of Vidaza

[anne&dean]

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!

[Birgitta-A]

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

[anne&dean]

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.

[Birgitta-A]

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

[Chirley]

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.

[anne&dean]

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

[Birgitta-A]

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

[anne&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

[Birgitta-A]

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

[anne&dean]

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

[Birgitta-A]

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

[anne&dean]

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

[Birgitta-A]

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/library/skin/blpressure3.htm
Kind regards
Birgitta-A

[anne&dean]

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

[squirrellypoo]

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. 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.

[anne&dean]

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

[DianeD]

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.

[ann]

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

[anne&dean]

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

[Neil Cuadra]

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.

[anne&dean]

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

[anne&dean]

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

[Gloria J]

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.

[anne&dean]

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

[ann]

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

[anne&dean]

I keep praying every day will be better, but seems like Deans spirits are getting lower. I went in yesterday and he wouldn't even let me give him a bath. The dr. had came in early and told him the platelets were not working at all, he decided he was dying. The have put him on a wide specturm of anitbodics, which means they are giving him several antibodics to cover any and everything. Praying they will soon get the crossmatch for his platelets, they say it takes 3 to 4 days as they have to be very careful. He got 6 units of blood and 6 of platelets Thursday. Yesterday he received 2 units of blood and 2 of platelets. The doctor came in again late yesterday and told him they were going to give him plasma, he got scared because he had never taken it before, and was calling me to come up there. I went back to hosp. and stayed till 11pm last nite, he had no reaction. His stools are still the same, black liquid, 6 to 7 times aday. He started running fever Thursday nite, and it is just a low grade fever, nothing we have not been putting up with for months.
I have been considering the idea of hireing a male nurse Anne and have decided that the first of the week I am going to do this if things are still the same, you just reinforced my thoughts.
He ex-wife called yesterday she lives 4 hrs. away asking if she could come and see him, we have always been on a very friendly, as my family says unusual relationship. I talked to him about it and he said if it was ok with me, it was ok with him. It was a hard decision for me but I finally called her back and told her to come when she can, you no the old jealousy bug tried to get me, but I remember when my ex-husband died and the pain and hurt I felt, because when you live with someone for 12 years, you will always care about them.
The hardest part of yesterday was his crying and telling me he loved me but it was time for him to go! I got hysterical and had to leave the room. I know his spirts are low, as this is the longest he has been in the hospital, and it seems the blood and platelets are just going straight thru him.
Deans blasts in April had increased to 25% which is considered by some drs. as acute lekumia, aml, and he had a mild heart attack week before last. He has afib, and has had 2 by pass surgerys, in previous years, the last one being in 2000.
Hopefully today will bring some good results, from more blood work they did yesterday, and just maybe the match will come in for the platelets.
Yes Anne please put us on your prayer chain, because I firmly believe that everything is in Gods hands.
Thank you all and God bless, time to get my shower and get over to hosp.
Ann

[anne&dean]

Well, we got a little good news yesterday, they have found a parial match on his platelets, hopefully things will start changeing. Had 4 units of blood and 2 of platelets yesterday, his spirits still very low and can not convince him that he will be coming home. Will be so glad when Monday comes as his regular dr. will be on the hospital rounds this week , and he has such a great bed side manner. I think it will help Dean alot. The bad side of yesterday was he seemed to have more diarea then he has been having, it embarreses him so, because he has no feeling in that area, and usually messes up the bed, that is why I try to take care of the cleaning of him and bed, he needs to have some pride left. I get him up and to the toliet every two hours but yesterday, it changed its course and he had one in bed. Poor baby it was a mess and he didn't even know it. I got him up for the regular schedule bathroom visit and it was every where. I had to call nurse and get her to unhook him from everything so I could put him in shower. They changed his diet alittle yesterday though it is still liquids, he was able to get some cream of chicken soup, and that made him happy. His son came in yesterday from beach and went up and seen him, and Dean told him that he was sorry but he probably wouldn't be back home, that this was it, and he hated to leave but it was time. Thank goodness his son stood up to him and told him , no he would be back home and not to talk like that.
Well time to get my shower and get up to hospital just wanted to say thank you all for your prayers and listening to me.
Ann

[ann]

Are you Ann with an e or just plain Ann like me? I will continue to pray for you both. I told my husband about you last night and he said to tell Dean to never give up. His time will come soon enough but not to give up. I reminded him of how he was last year and he laughed and said he just was never going to remember bad times. I love that! I hope that your regular doctor can give you some answers since he knows Dean better than the doctors who come in on the weekends. As the platelets are given more often as well the transfusions I am told the cross matches are harder to do. We are so thankful for each day, it may be the last but we try to make it the best. I will continue to pray that you will make it through this valley of the shadow of death and seek the sunshine on the otherside. God bless you both. Keep us posted. I am sure that many on this forum is praying also.
Take care of yourself.
ann

[anne&dean]

Hi everyone,

It is so good to post something positive. Deans platelets were up to 32, the most they have been in a long time. An hour after he had taken 2 more units of blood they did his counts again and his platelets were up to 34 and his hemog. was 9, hasn't been that high in ages. they will take another check in about 6 more hours.
thank you all for your thoughts and prayers.

ann

[Neil Cuadra]

Ann,

Thanks for letting us know about Dean's improved counts. It's very welcome news!

[anne&dean]

Just got off the phone with nurse at hospital, Dean did not have to have any blood, except the first he had yesterday morning, his counts are holding. They just took a sample, so we will see what they are. This is such wonderful news, I am so happy. And this week his regular doctor will be making hospital rounds, so this will give Dean more hope. Will post again tonite when I get home from the hospital.

Thank you all again for your prayers and being here for us.

Love
anne

[ann]

Wonderful news! Just keep up the good thoughts and prayers. Hope that he is beginning to fight this terrible disease. Give him our love and we will keep praying.
ann

[mausmish]

That is great news, Anne, and should put Dean in much better spirits.

[launch]

Dear Anne,
I was glad to see the post from the other Ann when she stated... "I Hope that he is beginning to fight this terrible disease..." My husband, Ron was diagnosed with MDS Feb'09. He was very very sick. It was all "Doom and Gloom" and there were many nights I cried after Ron went to bed. But, with Lots of Prayers, God's Mercy, and wonderful Doctors and Medicine, Ron is doing wonderful right now. His last Vidaza received was mid April'10. He is now on the "Watch-and-Wait" with continous monitoring of blood and Bone Marrow biopsy when necessary. But, back to Ann's post... about hoping Dean is beginning to fight this terrible disease.

There was a point, but it wasn't until around Feb'10 that Ron up and said one day... that's it!!!! I am not going to let this thing beat me! He started walking daily... and was even walking the days he had Chemo (Vidaza) treatments. He planted a garden, etc.... (very small one), and he even starting helping A LOT at the HOUSE!!!! He continued to get better through the fight....

I pray for you and Dean to regain some normalcy and return home very soon...!!!! The hospital is definately depressing.... So, the sooner out of there, the better!!! We'll keep you both in our prayers.... Cindy

[anne&dean]

Thank you all for your post, it helps alot to have someone that knows more of what you are talking about.
The night nurse gave Dean to units of blood and let it run for 7 hours, usually they give it to him in 3hrs, this was Monday nite, so they were unable to do his blood test until late. His platelets, are going down again, but his blood was not as bad to need any. He ended up getting 2 units of platelets last I had talked to the nurse at about 9 pm last nite. But his liquid bowel movement measured out the same as it had been after I got there yesterday morning, it was real discourageing.
His doctor says he thinks he is improving, I tend to disagree, maybe because I as seeing him more than the doctor does and looking at the read outs of his blood test everytime they do them. His platelets got back down to 22 yesterday, and last nite they had made it to 24, they had said they wanted to keep them in the 30 range, then yesterday his dr. said the partial crossmatch they were using was hard to get. It really made me mad, I felt like they were not doing all they could. As Dean has no feeling in his bottom area due to their mess up over a year and a half ago, it is very embrassing for him when he messes the bed. That he one reason I try to stay at hospital 8 or 9 hours. I wish he would start trying to fight more but he just want. We have been dealing with this since 08 and I think the fight has gone out of him. I try to tell him funny things the grandkids have done, and how our cocker spaniel is stealing the tomatoes soon as they get half ripe. I will not talk to him about his dying, because I just can't. Now we are going on 3 weeks in the hospital and it is the longest he has ever been there. And where are his kids, they just come when I call and say that he is in worse shape, stay a couple of days then leave back to their happy life. They don't even call everyday. When this all started his daughter came down every time it was chemo week, now she is so tied up doing other things. All I ask for is for them to call him every day, and have told them so but it doesn't do any good. I understand they live 3 1/2 hrs. away, but sorry if it was my parent I would be here.Well thats enough of my ranting and raveing, kids are just different now days I guess, even though they are both in their 40's.
Hopefully today will be brighter, I am sitting here wanting to call the hospital and see what last nite was like but afraid to that there will be bad news.
I just called the nurse his platelets have gone back up to 30 at 2:30, his hematcrits are down to 23, but the dr. said not to give him any blood, not understanding this. His bowels had not moved any during the nite, so hopefully we are haveing a change again. The nurse just drew his blood again so by the time I get over there they will have a new reading.
Will keep you all posted, sorry I sounded out so, but it was good to get it out of my system.
Thank you for all your hopes and prayers.
anne

[launch]

Hi Anne,
I sent you a Private message... please let me know when you receive it.... I keep you and Dean in my prayers.... Hugs, Cindy

[anne&dean]

I am waiting on phone now to talk to my husbands nurse, so let me start by telling you about yesterday, we got a big scare, thought Dean had a heart attack, right after I got him out of the shower and back to bed he started having pains in his chest. The dr. had just started rounds, and came right in, they gave him nitro, did a ekg, and took blood. He had turned real pale and he never complains, and as this same thing happen before when in hospital, we all felt sure it was his heart. As Dean has a do not reseate on file, I thought well this is it. Called my son and him and his wife were about an hour away and said they would be right there. Figured I would wait on calling his kids till I knew for sure as they are 3 1/2 hrs. away. Well the reports are came back negative, but the doctor thinks it was because his blood had got so low, and they started giving him blood right away.
His bowels are doing better yesterday the 9 hours I was there he only had one bowel movement and the liquid was not as black as he has been being.
As he did not have a transfusion yesterday, only the one they let run 7 hours and had started at 1 am on the 29th. Blood report from 1am on the 30th showed his hematocrit was 23, but report from 7 am showed it had went on to 24. His platelets had fallen again, but the nite doctor said no transfusions. When his regular doctors came in they started transfusion right away, and said they were also going to give platelets, he recieved the blood but no platelets. I asked the nurse and she said she did not see any orders for them. She said maybe it was because he has to have special platelets and they would send then when they got them. At 9 pm last nite he still had not received any.
Ok just got off phone with nurse, only one small bowel movement and it was brownish, his platelets finally came in late last nite and he received them during the nite, they had got down to 21, which they are wanting to try and keep at 30, but at least they got them. His hematpcrit was 26 at last blood draw, they will be drawing again in a few minutes.
The nurse said he had a fairly good nite, not sure what that means.
I have hopes that we are now making a turn around, as he was receiveing 2 to 3 transfussions a day and platelets several times aday. Sort of upset about the platelets, I know they have to come from somewhere else, but you would think that as big as Duke Hospital is that it would have had at least one bag on stand by, not sure how long the platelets are store about or if they have to make them up guess I need to read up on this.
Well looking forward to a better day today, thank you all for your hopes and prayers.
Anne

[Neil Cuadra]

Anne,

You had quite a scare with Dean's chest pains. You must feel like you are on high alert all the time.

To answer your question about platelets, the platelets that people donate last only about a week, while donated blood lasts about 6 weeks. That's why the supply varies from day to day depending on donors, and even a large hospital is more likely to have an adequate blood supply than enough platelets on hand. There is always a need for platelet donors.

[anne&dean]

Well the doctor came in and talk a long time they told us there was nothing else they could do. His iron is building up due to so much blood and it is bleeding out as fast as it goes in.
Dean decided to come home, the doctor said he could stay in hospital, but they would not do anything just make him comfortable if he had any pain. If his heart started acting up which they are expecting to happen they would put him on a morphine drip.
Thank heavens for the nurse at the hospital, he talked with Dean and convinced him he would be happier at home with hospic. Due to a holiday weekend they were unable to get hospic here and wanted us to wait till Monday , but we said no, so they loaded him up with blood , platelets, calicum, etc. and we came home last nite.
We were gonna just tell everyone he was home and not tell them till after the weekend, but his daughter got to asking Dean so many questions he didn't know how to answer so he told her.
Her husband called me back and ask if she could come down today, sorry I was not nice I told him that we really wanted to be just us for the weekend, and he said well it was his daughter and she wanted to come. So I guess she will be here sometime today.
Hospic will be coming Monday, and they will explain everything to us. They gave me morphine drops to put under his tongue in case he started having any pain.
I was so happy this morning he actually ate breakfast, his eating is very poor.
He wanted biscuits and gravy, and he ate two. Then I had bought his favorite candy and he eat that. They have put us on a sliding scale for the insulin and told him to eat whatever he wanted.
So far his bowels have not moved since we come home, he had reg. food last nite and today.
I can see that the blood did not do as good as it had before, he is still real pale, but at least he is home in his recliner with his dogs. This is so much better for him.
I know it is all in Gods hands, but the way the dr. talked it want be many days because the lack of blood will cause heart problems.
Just want to thank you all for your love and prayers.

love
Anne

[Ruth Cuadra]

Dear Anne,

All of our hearts go out to you and Dean. I hope you can find some pleasure and comfort at home. Hospice is a wonderful organization and can help with all of your needs.

Regards,
Ruth

[ann]

I hope that this time together will give you peace. God bless you both and you will be in our prayers. Please keep in touch. Everyone on this forum cares for each other so much. Enjoy this July 4th, the fireworks have been going off for the past 4 nights around our home. We live in the suburbs and there are fields all around us. Thank God for the rains we have been getting so far no fires. My love to you. Take care of yourself.
ann

[launch]

Dear Anne & Dean,
You both remain in our prayers.... Hugs... Cindy

[squirrellypoo]

Thanks for keeping us all updated. I hope that you two can cherish the time you can now spend together in the comfort of your home, for however long that is. I'll be thinking of you both.

[Al's Wife]

God bless you Anne. You and Dean are in our thoughts and prayers.

Love,

Linda

[Gloria J]

Dear Anne,

I hope the familiar surroundings of home (complete with your dogs!) will offer some peace to you and Dean. You are both in all of our prayers and thoughts. Be strong, and God bless.

Gloria

[anne&dean]

Hi all,
Thank you so much for your hope and prayers. Yes coming home was the best thing we could have done. The only problem we have is most of my husbands family lives about 4 hours away, and the last two days has been like a wake (THIS WAS MY HUSBANDS WORDS)! We have had so much company and with the different people coming in from hospic, neither of us are getting any rest. Hopefully today will be different! It is hard to tell people after they have driven 4 hours that they need to go after about 30 minutes. But after yesterday , I plan to do exactly this.
Deans emotions are very raw, and hopefully we will be getting meds from hospic to help control this today, or help some.
He has never complained of pain but last nite he said he was hurting in the upper part of his stomach where the uclers are. I gave him a stomach pill, he said it was a little better, we went to bed both of us completely exhausted at 9:30, Dean was back up at 11:30, he didn't wake me up so I did not know he was hurting. I woke at 2:30 am and found him sitting in his recliner, and he told me his stomach was hurting. I started to give him some of the liquid morphine last nite, but his daughter disagreed with me and said he will be alright. Dean never complains of pain, when he had his by pass surgeries , he took very little pain meds, I should have listened to myself, I know him better than anyone after 24 years together.
His feet are swelling so bad, he wanted to try putting on the elastic stockings we had for him from several years ago, gee had forgot how hard those things are to get on.
Well I gave him the small dose of the liquid morphine, a stomach pill and put the stockings on, got him back in bed at 4am and he is resting now.
From now on I will go with my instincts and not listen to anyone else!
He has slept very little this week, due to inability to relax, and been very emotional, which is expected. We are suppose to be getting a package from Hospic today with a medication called ativan, they say it will help with the anxiety.
He is already taking a sleeping pill at nite and a .5 of xanx. it was 2.5 but the nurse changed it yesterday. He takes the xanx in the morning after meals too.
He says he has enjoyed the company but after 30 minutes, he is ready for them to leave, he is so caring and tender hearted that he want say anything to them, so guess I will have to be the bad guy. I am going to put a sign on door saying please limit visiting to 30 minutes.
Will call nurse today and tell her about the stomach pain, this is the same pain that he had with the bleeding uclers as far as I can tell, think they must be getting worse. His nose started bleeding some yesterday, so I know his platelets are down.
At least he is resting now and I feel better.
Love
Anne

[Al's Wife]

Anne,

I've learned in the past from taking care of ill patients that you MUST stay ahead of the pain. If they are complaining of pain, then it will take much longer for the pain meds to kick in.
God bless you and you are both in our prayers.
Linda

[anne&dean]

Dean left us yesterday afternoon to go to a better place, he is now pain free, and happy. As told by the doctors he had a massie heart attack.

Please do not give up hope on your treatments, my husband had many other medical problems and the mds was just a little icing on the cake. Put your faith in God, he will help you get thru everything.

We had 18 great months after my husband was diagnosed, and he the treatments dacogen were not bad at all.

Good luck and keep your faith.

anne

[Neil Cuadra]

Anne,

Ruth and I are so sorry to hear of Dean's passing. You have our greatest sympathies. MDS stole Dean from you too soon, but he was lucky to have you for your 24 years together. We know from what you've written how attentive and loving you've been while taking care of him the last 21 months since he was diagnosed. We're glad that Dean had chances to say goodbye and got the comforting care you and hospice provided.

Your emotions must be very raw right now but we hope you'll find peace with the memories of your years with Dean before his illness. We're still here to listen and talk if you need us.

[Birgitta-A]

Dear Anne,
My thoughts and prayers are with you at this difficult time. I am so sorry for your loss but as you wrote Dean has found peace.
Warm regards
Birgitta-A

[Debbie W]

My heart goes out to you and wish you strength and peace during this difficult time.

Kind regards,
Debbie

[Al's Wife]

Anne,

God bless you and I am so sorry for your loss. I know that the memories you and Dean created together will help sustain you through this time.
Please continue to let us hear how you are doing.

Linda

[Susan L]

I have been following your journey and you are a wonderful wife. How wonderful your husband had you to be with him. I pray for you.

[launch]

Dear Anne,
I am so very sorry to learn of Deans passing.... I will continue to pray for you and your family during this difficult time. God Bless you.... Cindy

[Zoe's Life]

Anne,

I am saddened to hear of Dean's passing. May God comfort and strengthen you. I am so grateful he had such a wonderful and loving partner to be with him.

Zoe

[Gloria J]

Anne,

I can only add my deepest sympathy, and hope that the comfort of your many happy and healthy years together will sustain you in the days ahead. You were a steadfast partner and caregiver to Dean. Our thoughts and prayers are with you now,

Gloria

[mausmish]

Anne,

So sorry to hear about Dean's passing. I, too, have been following your journey. You've been a constant source of strength and comfort for him and an inspiration for us here. I hope we can provide some comfort and strength in return. Bless you.

Karen

[Caroltri]

Ann:

I'm so sorry for your loss. You are in my prayers. I promise to fight the good fight as you have inspired us to do in yours and Dean's honor.

[crpa]

Sorry for your loss
Christine