My Dad and MDS

[Marixyz]

I am so glad I found this website. I definitely need a place to go to talk. My dad, age 74, was diagnosed with MDS right after Labor Day 2006. Prior to that, my dad was a very young 74, hard to keep up with - always on the go, gardening, fishing, hunting, buying & selling small machinery, and very hard to get to stay put. He enjoys life to the fullest, but lately, this isn't the same dad. The doctor put him on a variety of medications, and he is getting Vidaza chemotherapy treatments of 7 days per month. We saw his doctor on Friday, and the first two treatments haven't shown any progress. He will undergo another two sessions before other options are considered. My question: are there other options? What the heck is going on? I want my dad to be feisty and outright obnoxious again!!! I want the crazy old Italian father with the home-made wine, the funny jokes, and the loud sound of his voice - not this meek little man who sits around waiting to die. Nobody really says if this disease is fatal - if he will indeed ever feel better - and the whole thing is scaring me half out of my wits. I think about my dad all the time, I call him so much, I'm probably more of a pest than anything. I worry and have bad dreams that my mother is left alone and life without my dad is unimagineable. How do you go from 75 MPH to 5 MPH in such a short time span and with almost no notification? What is going on? Is there a possibility the Vidaza will work? He can't go on through life barely able to walk up the stairs without being left breathless. Can anybody, somebody please help me - let me know what's going on? The doctor said I shouldn't worry about him dying, but he sure doesn't appear to be doing much living these days. My parents celebrated their 50th Wedding anniversay last May and my brother and I went all out to throw them a magnificent bash. My dad had the best time and was so enthusiastic and excited while we were in the planning stages of the party. I want to see that enthusiasm again. Can anybody out there offer me any information, sound advice, what can we do to help him and what can he do to help himself? He seems depressed and feeling hopeless. I think maybe a more positive frame of mind might help, or something to distract him from dwelling on the sickness. It's hard for someone who hasn't been sick and enjoyed a lifetime of fantastic health to suddenly be lethargic and listless like he is. I need someone to help me figure this out. I'm not prepared for my youthful 74 year old dad to suddenly seem like a 90 year old frail little guy.... I'm sorry for sounding so desparate and scared, but I really am. Thank you for reading and for any help you can offer. ~ Mary

[Linda]

My husband is a 1 year survivor of MDS. Yes it can be fatal, but with treatment he can live a long time. It sounds like your dad is depressed. He needs to ask for meds for this. I asked my husband's doc initially for the anti-depressants for my husband, because he was sooooo down!

They did help. He has been redecorating the house since the summer. He cannot drive due to pain meds, so he does things here at home while I work. He is just 53. You can get information from the aa/mds association. They will send you all kinds of info. They will update you with info on new meds and promising treatments.

Do you go to the appointments with him? I am there at every one. If I cannot go, my daughter will go for me. This way I hear what the Doc has to say.

My husband responded after 4 treatments of Vidaza, along with neupogen and neumega. He continued to do well. Then when he took a month off this counts dropped. This put him in a funk. He bounced back though. Some people take five treatments to see results. Others need to try a different tac.

The doc can tell you what is best for your dad's situation. There are so many variations to this disease that it goes by individual.

I will pray for your dad and you. Get on the websites and in the printed info, and get a positive attitude yourself. It is hard but it will help him.
Linda

[Marixyz]

Dear Linda - thanks for taking time to reply, and for the words of encouragement. I'm beginning to realize, through my new friends here on Marrowforums, that we truly do have to wait until my dad attains at least a four session trial with the chemotherapy. I'm asking my mom to look into that drug called Dacogen as well, although he's currently on the Vidaza. On top of all of this, he has diabetes, and his sugar levels are doing some crazy things. I think you may be right, he may be depressed. My dad is the youngest of 12 siblings, and his last surviving brother just died a few months ago after a bout with Lou Gehrig's disease. It was a fast progressing disease, he didn't make a full year after he was diagnosed. A year earlier, my dad's favorite brother, the one who had basically raised my dad as a father figure (their dad died when my dad was only 2 - they were a family of Pennsylvania coal miners) passed away from pancreatic cancer. He had turned 80 a few months prior to his death. I think my dad is indeed feeling depressed about his brothers and thinking that his time is up as well. He does have three surviving sisters, two in their mid 80s, and they are doing fantastic for their ages! I think it's a compilation of factors, but mostly, being that he was never sick and full of vim and vigor all these years - suddenly, he can't do those things he's accustomed to doing. I try to get him to have a more positive outlook, but he's stubborn. I hope with the next two sessions of Vidaza ending when spring starts, he will develop a better outlook and his mind will help to heal his body. I believe that is possible.

Again, thanks, and do keep me posted. Sounds like your husband is trying his best, and for that, be thankful and proud. I'm sure it's harder being in their shoes than ours.....

God Bless You and Your Family, and thank you very much. I hope we can stay in touch.

~ mary

[seniorrico]

I have MDS. Diagnosed last March. I am on Dacogen and getting fantastic results. Call me at 910-791-6745 and I will share my experiences.
Warren Rich
Wilmington, NC

[Marixyz]

I will call you first chance I am able. I have many questions and appreciate anything you can tell me. Right now, my dad is mad at me - could it be the medicine? He seems to think I need to mind my own business and let the doctor continue with the chemotherapy/Vidaza treatment. Although I don't have much knowledge on any of this at all, I think the Dacogen sounds like a better treatment.

[kvichi]

I doubt that your dad is "mad" at you. He is mad at the situation and is not used to you being the worrier/caregiver. He is your dad and probably feels like he should be taking care of you. My dad and I have gone through this as well. My dad was diagnosed in 2002 and still going strong. Not as peppy as he used to be and far more tired but fighting a good battle. It has actually brought us closer because I seem to be the only one in the family not in denial. I do a lot of research for him and share a lot of information with him and he calls me a lot with questions. I am a brain tumor survivor, and I think this gives me a more direct matter of fact approach and my dad appreciates it.
Anyway, continue to research for your dad and be his advocate. He will (hopefully) appreciate it in time, perhaps when he has a better understanding of this horrible disease.

Good luck,

Kim

[Marixyz]

Hi Kim and thank you for your email. I've talked to a few friends who have told me that the medication can actually make my dad irritable. I'm sorta afraid at this time to do much research and/or share what I collect with my dad. He is starting his third session of Vidaza, and I'm hearing that he may not see a response until the fourth session. He basically told me to mind my own business and let the doctor do this Vidaza treatment. I have asked my mom to ask some questions regarding Dacogen, as it sounds more promising. What do I know? There are some nice people here on Marrowforums who I will contact myself and will continue to ask for advice from those of you who are members who can help me better understand what's going on. My dad has always been ultra healthy and I'm sure he's irritable at not feeling well for so long (since Labor Day). It's a struggle, and I think not knowing is the hardest part. I'm truly glad I found this website! Whether I have my dad's approval or not, I know there are many out there who share my feelings and concerns, and I need this very much right now.

God Bless You! Please stay in touch!

~ Mary

[Wayne O'Shana]

Hi Mary:

If your dad huffs and puffs when climbing the stairs he may have a low Hgb count. Do you have any CBC reports to check on this? Maybe your mom or dad can get copies of all his lab work so you can get a better idea of what is going on. It is important to have a folder with all lab reports and a running record of the date and type of any treatment.

Where is your dad going? And try to find out if his doc has any experience in working with MDS. You say he wants to let the doc take care everything without any input from you. The graveyards are full of people who had total faith in their docs, and you may have to be an advocate for your dad even if he or the doc don't give total approval. Best wishes and keep us posted.

Wayne

[Marixyz]

Hi Wayne and thanks for your post. Yes, my dad does huff & puff, and they do have records of all his blood readings, but both my mom and dad make me feel like I'm butting into their business if I ask any questions. My brother and I talked last night, and he was asking me what type of MDS my dad has, and I can't answer that either. But I will ask to get the information as you suggested and see if I can make heads or tails out of it - I am sure through my friends here, I can get more answers, and it's all a big help to me!

My dad is currently starting round 3 of vidaza - are you familiar with that? He is going to go for the 4 sessions and see if he has any results or feels better. I am thinking Dacogen might be a better idea from what I have gathered here, but I can't make my dad do anything. I agree with what you say about people and their doctors. My dad has a hemotologist in Niagara falls, and yes, he is familiar with MDS and is said to be a very good doctor. I have met him, I like him and to a degree, I trust him. But in general, I don't trust doctors a whole lot. I am very picky about doctors, but I believe God works through man, and I have been blessed by a select group of doctors who fit that profile. They care. I am sure this doctor cares about my dad, but I think there's a lot my dad can do to help himself as well - would you agree?

Can you tell me - does a positive attitude help much with this disease? My dad's attitude is terrible, and he says he is dying and "whatever happens happens".... I don't believe it's such a terrible thing that he should give up so easily? Unfortunately, I'm limited to how far I can go and his life is really not in my hands. I am here to gather knowledge and because I care, and I take the suggestions and advice here seriously. Subsequently, I thank you and please - keep me informed! When I get those numbers, I will share them, because I'm quite sure I won't have any clue what they mean....

God Bless You!

[Steve Kessler]

Mary,

Both Vidaza & Dacogen are methyltransferase inhibitors. That is, they do the same thing. Each has success stories and clinical results to date are mixed as to whichone works better and for whom. Some people have done better after switching from one to the other, but not all. I'm on my 4th round of Vidaza along with Enbrel as part of a clinical trial. I haven't yet responded and the doc says the median response time for Vidaza is about 4 rounds, but some people take as long as six.

Yes, this is a lousy condition in that it robs you of energy a lot of the time. I'm learning that I can still do it all, just slower and sometimes I have to wait a while. My advice to your dad is to just ignore the weakness as best he can and go on with all the things he can possibly do. There is still a lot of satisfaction out there!

[Wayne O'Shana]

Hi Mary:
Vidaza used to be called Azacitidine ... adding to the info posted by Steve: it has cytotoxic effects that cause death to rapidly growing cells, including cancer cells. There is a warning that men should not father a child while taking this drug. Is the hem/onc checking for kidney or liver problems? All three cell lines can be degraded and he may need transfusion support. It is easy for him to feel down when you think of low counts combined with side effects that might be worse for him. I know it would be great if he had something to be cheerful about, and a good attitude is always helpful.

You might try telling your Mom about this site, or even showing it to her if you can. Explain how it might provide info that could give some help or hope for your Dad. She might open up to to the thought of going through the records with you and getting involved in a search for some answers.

In the meantime, visit www.aamds.org and www.mds-foundation.org When you have put everything to memory (well, almost everything) go to the two sites I listed on the thread above about spleen removal.

[Marixyz]

My dad informs me that he is feeling a little better and that his blood is coming up on its own. Please keep the prayers going for him, as I do for everyone on this website! It's nice to see a little bit of my good old dad smiling through - like sunshine peeping through after an awful storm. A rainbow is God's promise, and it seems like the rainbow is just up the road! I understand from all of you that this disease produces roller coaster effects, but it's good to hear something positive finally.... He is on his fourth round of Vidaza this week. We will see the doctor on March 19th. I hope this means the medicine is working.

[choijk]

Hi Mary,

My dad was diagnosed with MDS on 01/13/07 when he vomitted and fainted and was rushed to the ER. I am very confused and very frustrated with my dad's condition as well.

My dad is 71 and will be 72 on May 24th. He received a blood transfusion with 3 units on 01/13/07 and he just received another one today (2 units) 03/12/07. He's hemoglobin was a 6.6.

I will be praying for your dad when I pray for my dad as well. Please keep in touch and let me know how your dad is doing.

June

[choijk]

Hi Mary,

Please keep me updated with your dad's prognosis regarding Vidaza. I'm glad that he felt better.... is he continuing to feel better?

June

[Steve Kessler]

The usual response time is after three one-week course, with some taking as much as 6 months. There is also some evidence (a poor study, but still encouraging) that a switch to Dacogen after failure of Vidaza might work for some. About 1/3 of patients don't respond to either, but some respond to Revlimid, evenif they don't have a 5q- chromosomal abnormality. Even if no response to these, some people do well for years on transfusions alone.

[choijk]

Hi Steve,

Do you happen to know how long a person can receive blood transfusions? I would like to just know a ball park number.

Thank you for sharing all your knowledge and experiences!

June

[Marixyz]

My dad was diagnosed in September, so we have known he has MDS for six months. In the beginning, he had transfusions every 1-2 weeks. He never went longer than 2 weeks. He has just completed his fourth session of Vidaza and is having a transfusion today, but it has been a full month. The doctor seems to think this indicates progress. We met with him yesterday, and he said that my dad will need chemo indefinitely, that this disease is not curable, but only manageable. I'm guessing that maybe, for the rest of his life, my dad will hopefully have a few good days or maybe a few weeks per month where he is feeling alive and able to do anything. They say they are trying to get him a point where he won't need blood transfusions, but I don't see that happening yet.

It is all very confusing, and scary, and heartbreaking to watch someone who has been so vital and energetic all of my life suddenly seem so frail and helpless.

My dad's birthday is next Thursday, he will turn 75. I wish I could get more information as to life expectancy and quality of life, but the doctors don't seem to divulge more than necessary.... I'm trying to learn as much as I can on my own, on my computer, and I do thank God for the blessing of this website, my online friends, and the sharing of such helpful information and communicating with others who have this disease.

Feel free to email me at marixyz@aol.com and perhaps we can help each other get through this....

My prayers are with your dad, and I'm asking you to keep my dad in your prayers as well....

Thank you

~ Mary

[Charlie]

On Mar 1st my husband recieved a call from the Family Doctor clinic on some blood results he had taken which showed dangerously low. They advised him that he had an appt at the Cancer clinic for 2:30 that afternoon.I had worked nights the night before so he did not wake me up to tell me about this appt. I woke up on my own and got dressed and went meet him. He had already been called to the back of the clinic. Thank God I went to meet him because they admitted him the same afternoon!They did not even allow us to go home,we walked next door and he was admitted through the ER! Two days later we were shipped by abulance to Tulane in New Orleans. The initial diagnosis was AML after another bone marrow biopsy in NO it was reevaluated as MDS in the intermediate stage but they had already put in a Med port! After a week at Tulane they sent us home until a donor could be found for a stem cell transplant. He had his 5 brothers tested but none matched. So now they are resorting to the National Registry. He is 52 yrs old. Doctors want to start Vidaza within a month to see how he responds to that before scheduling the stem cell transplant. Is there any way that the Vidaza would do the trick without having to go through the stem cell transplant That would be a real blessing! for sure.Not looking forward to the transplant,I know it will be a long haul! Any feed back would greatly be appreciated Thanks Donna The first appt at Tulane after release they thought that the MEd port should come out due to the fact we had no donor and it could take a while before the transplant so instead of risking infection at the Med port site they removed it then will put it back in when needed which will be 4 to 6 months.Unfortunately we will be billed twice for the same service. I guess that can not be helped because when we first arrived at Tulane they thought he needed chemo right away. On top of the MDS he also has HEP B virus which is inactive right now but doctors say this will be an additional complication at the time of transplant

[Marixyz]

Hello Everyone - I haven't been on in a very long time. My dad was diagnosed with the MDS in September of 06. He had every available treatment on the market - you name it, he tried it. Inevitably, the MDS progressed to AML last summer, and he again tried various forms of chemotherapy. Because his blood was always so low, he lived on weekly blood transfusions for most of that time. My dad died on May 3, 2009 and the cause of death was MDS which lead to AML. Now from what I have had to learn the hard way, there is no cure for MDS and it will inevitably lead to AML. My dad didn't get three full years, but to be honest, the years he got weren't good ones. He was tired all of the time and could barely walk from the bedroom to the bathroom without having to rest for oxygen because the RBC was so depleted. He spent 95% of his waking day in bed, sleeping or watching tv. I guess the good news is that he never had any real bad pain with these diseases, only fatigue and listlessness. Towards the end, the bruising was really bad on his arms, he did get a dose of shingles which is common for these blood diseases back around the time he was diagnosed with AML, which they had to wait for the shingles to clear before they could treat the AML. The chemo for the AML was even worse than the disease. Back when the doctor diagnosed my dad with MDS, he told us it was a blood disorder "nothing serious". He lied. MDS progresses into AML and all chemotherapy can do is slow that progression - and the quality of life pretty much stinks for them. My dad was also a very lively 74 year old upon being diagnosed, but the next nearly 3 years of his life he was a shell of himself, requiring assistance 24/7. He could feed himself and he could manage, with help, to get back and forth to the bathroom. My mom pretty much wore herself out taking care of my dad, and all of us helped as we could, which was limited because we really just wanted him to be well. Do your homework with this because it is an aggressive, progressive and life threatening disease ultimately. Don't let anyone tell you, like the doctor who told us, MDS is nothing serious. Until there is a cure or hope for remission, which I now feel there is nothing available to put these diseases into remission whatsoever, do your homework and learn as much as you can about it, because my father fought hard to stay alive. He wasn't really living, and now he is gone, and I'm pretty upset as you can most likely decipher from reading this email. It's a fight, but the leukemia (AML) wins and once that is the diagnosis, it really doesn't waste any time.

[Neil Cuadra]

Mary,

Please accept our condolences on the loss of your father last month. You and your brother and mother have been through so much.

You have every right to be angry at MDS and AML for taking away his vitality, for the suffering you all had to endure, and for taking him way from you and your family in May. There is no getting around the fact that MDS and AML are life-threatening and often life-taking.

Some patients are more successful than others at keeping MDS at bay with chemotherapy. It seemed for a time that your father's counts were making a comeback on Vidaza. It's such a shame that he didn't get his strength back so he could go back to the physical activities he enjoyed so much.

Your father was fortunate to have a caring wife and children. It's to your credit that you spent time asking questions and learning what you could do to help him. We hope that his first 74 years will be the ones you remember most strongly and that they will be cherished memories.