My 76 yo father has mds

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• September 5, 2017 at 5:30 pm #33731
  Natalie Lugo

  Participant

  My father has been diagnosed with MDS and was recommended to start Vidaza. However he is scared and is refusing to get the chemo he needs. I’m scared, I don’t know what else to do. Can someone please let me know what to expect from a patient with mds who refuses chemotherapy treatment. My father additionally has low kidney function and a pacemaker. All I can get from google is that mds will eventually turn into aml. Anybody have experience with a stubborn parent not wanting Vidaza? Thanks you.

  September 5, 2017 at 8:28 pm #33732
  Catherine Wilkins

  Participant

  Hi Natailie. My dad is 74 and is in a similar situation. First let me say, I’m sorry sister. I understand and feel your pain.
  The term chemo is scary for us as well. My father was quite healthy and diagnosed with MDS through blood work in May this year. His red blood and white blood numbers have declined very quickly. His doctor have given him one year to live. I took him to Mayo Clinic and they said even though they agreed with the diagnosis of MDS (RCMD) – they also said ignore the time frame and live every day the best you can. We’ve settled into supportive treatment.
  We realize there is no cure but we try to be grateful for the time we DO have.
  He tried Aranesp (a growth hormone for 3 months) along with transfusions but his levels continue to decline.
  He gets blood transfusions averaging every three weeks and this week we learn that he needs another one (within less than two weeks). He hates the transfusions and now he is considering the next treatment – chemo.
  Dad announced in the beginning (just a few months ago) that HE WAS NOT doing Chemo – but as the reality of MDS and dependence on transfusions sets in, we are considering starting Vidaza soon.
  I am worried. I worry that the side effects of chemo will make him feel bad. I am told his blood levels may get worse before they possibly improve. At the moment – he’s not in pain. I DON’T want to see him suffer!
  Did I mention – he took himself off of all his regular medications (heart, blood pressure and not sure what else) So now I worry because the Chemo increases his chances for a heart attack.
  All that said, I have no control. Sadly, neither does he, really. He began clean eating, taking tons of vitamins and drinking smoothies. He stopped eating sugar and all diary. He was already thin and has lost weight. He wants to FIGHT this MDS but there is no fight to be had. Accepting it doesn’t feel right either. I struggle daily and know that a big struggle for him is depression (although he has a hard time admitting it). Early this spring he was busy as usual working on his farm. Now he feels he has no purpose. I know as his blood level drops, his frustration and depression increases.

  For me – as a caregiver/daughter – I HIGHLY recommend a book called BEING MORTAL
  https://www.amazon.com/Being-Mortal-Illness-Medicine-Matters/dp/1250081246. I am giving a copy to all my friends as I think it’s a MUST READ for everyone!
  This book (written by a doctor) as helped me see that we are ALL going to die. I learned that my job as a daughter is to honor my dad and his wishes through this process – even if/when I don’t agree with his choices. I try to help him by doing research, educating myself, discuss options and ultimately giving him the space to make his own choices. That’s how I choose to Love him through his MDS journey.
  I TRULY wish you PEACE and ACCEPTANCE with your father. Enjoy your time together. Best wishes….

  September 5, 2017 at 8:38 pm #33733
  Natalie Lugo

  Participant

  Catherine,

  I’m scared of the side effects of chemo as well, but I really wish he’d give it a try. I called my doctor today to cancel what would been his start with the first round of Vidaza and the doctor said this is a ticking time bomb. It hurts so much and puts knots in my stomach daily, but he doesn’t want to do it. He’s been receiving blood transfusions every two weeks as well pretty much substaining on that. But he’s also lost so much weight and has had a horrible all over body rash and bruising. I’m just so worried, I’d kill for his health to be good again. I will look into the book you recommended. Thanks so much for your support feels good to know I’m not alone. Best, Natalie

  September 6, 2017 at 1:08 pm #33736
  Allan Romriell

  Participant

  Natalie, Catherine,
  I am pushing 65 and was diagnosed with MDS a few months ago. I am currently in a low risk wait and watch category. I have 3 daughters and I know they are worried for me as well as you both are for your fathers. 12 years ago my dad was diagnosed with inoperable stomach cancer and given 2 months to live. He was a farmer and had worked every day of his life. When he received the diagnosis he never worked another day, just sat down read books, watched movies and called friends on the phone. I was very perplexed by this that he didn’t at least go out to his fields and wander around some or do some lite work and I kind of bothered me somehow. Now that I am facing a similar fate (although with a much longer time line) I sort of understand his actions better. A cancer diagnosis has really messed with my head as well, and although I want to do all I can to prolong my life I can sort of understand a little of your fathers actions I believe. I know I don’t have to tell you to support your dads in their wishes, and I feel for your eventual loss. I still miss my dad, sometimes the loss feels as new as it did 12 years ago. All the best to you both, I truly hope things improve for you both
  Allan

  September 7, 2017 at 10:03 pm #33752
  Cecile Huston

  Participant

  I was diagnosed with MDS this past April, caused by having chemo and radiation in 2000 from breast cancer. I will be 75 in Oct. I know the only cure is a bone marrow transplant and I do not feel I can go thru that with all the complications and dangers at my age. I am on my 4th cycle of vidaza, I have it 7 days, and also have a clinical trial twice a month. My blasts have come down. The vidaza does have some side effects but they are tolerable. The steroids they give me to keep me from being nauseated also keep me from sleeping but it is only 7 days every 28 so I can do it. My husband also in not the greatest health but is by my side for it all. I have had 3 bone marrow biopsies, the last one was after the 1st 3 cycles and does show improvement, with chemo it is a personal choice for everyone. Some of my family (I have 3 sons) could not understand my reluctance to try for a bone marrow transplant until they all were informed of all the complications and now they support me fully with my wishes not to try for it. My best hope is the clinical trial that may give me more time.
  The vidaza was started with an injection in my stomach, that did not do well, make me so sore, so now it is given in my port and no problem. The best thing to do is research all you can on MDS so you have all the info and make the best choices for your family member, what one person wants to do is not what is best for everyone.

  September 12, 2017 at 10:09 pm #33779
  Raghda Vanderpump

  Participant

  Hi Natalie and Catherine,

  I am so sorry to hear about your loved ones being diagnosed with MDS. I am a daughter of an MDS patient too. My father who is 74 years of age has been diagnosed with MDS just a month ago. He has been suffering from the symptoms for almost 8 month now. Like yours, my dad is blood transfusion dependent. At the beginning of of this year, his red blood count and platelets dropped dramatically and he needed blood transfusion every 3 weeks (from 2-4 units of blood). Only a month back, his blood transfusion dependence has increased. He now requires 2 units of blood almost every 2 weeks. I am so devastated not only because of his condition but for so many other reasons. My father lives in Egypt while I live in New Zealand. Managing things almost half way across the world is not easy. I am 10 hours ahead and yet I manage my father’s doctor appointments and medications as my mother is getting very overwhelmed. In Egypt, there is no medical insurance or any reliable healthcare system at all. TO be able to get a proper prognosis of my dad’s condition, I tried to consult so many doctors both in Egypt and overseas. The MDS foundation has helped me understand about MDS and the treatment limitations. My father tried Eprex and Aranesp injections but his red and platelet count didn’t improve much. I only came to know about Vidaza last week only when i reached out to an MDS Specialist in Florida. Doctors in Egypt are unfortunately not very reliable and the good ones have already migrated overseas. I have to source these injections at my own expense and feeling so scared already reading how expensive the treatment cycles are. With 50% chance i am prepared to use all my savings. But my dad is so stubborn and he is freaking out. Like you guys i am trying to hold on to any hope even if it might be 50/50 chance. I was going into depression in the last few months before i came to know about this forum and thought by reading about people’s stories it might give me comfort and a feeling that I am not alone, even by being so isolated here in New Zealand. I also wanted to share my story with you. Thanks for listening and all the best for you and your loved ones.

  Raghda (Raggie)

  March 27, 2018 at 11:11 pm #36013
  Natalie Lugo

  Participant

  to everyone in this thread, I’m not sure if you will get a notification, but i wanted to update you on my situation since you were all so kind to respond to me during such a difficult time in my life.

  This was originally posted in September, dad finally decided to go through with Vidaza. He started his first round in early October. We thought everything was going well until he fell in late October due to weakness. After that fall he remained in the hospital for a month because he was vomiting dark fluid and had a fever. after that month we were given a month left with dad. now in december we took him home for a few days then a hospice hospital were he spent 2 and a half weeks until his call to home on 12/26. seeing how this disease ravaged his body and mind is whats the hardest thing for me. having to witness this man who embodied strength suffer the way he did was rough. his legs were so swollen and dark and he started too have little red dots form on his arms and hands from what i pressumed was the lack of platelets. in any matter i take comfort in knowing he is no longer in pain, but of course I’m selfish because i just miss him so much. while I’m relived the worrying is over, i am now going through the grieving process of having lost my father so soon (I’m in my 20s, never married).

  this forum brought me a lot of comfort and did not make me feel alone. thanks to showing your support. I hope your families are doing better then my story. I’m praying for you all.

  March 27, 2018 at 11:41 pm #36014
  Raghda Vanderpump

  Participant

  Dear Natalie,

  I can’t describe how sorry I am to hear this. My deep condolences to you and your family. Please do reach out for support whenever you need. My father is still struggling with his MDS and as you said you can only imagine how many changes the body go through as a result of the blood transfusions. Unlike your dad, mine refused to have the Vidaza injections as the doctor advised it might cause him a massive setback before he starts showing any progress. Unfortunately, I don’t live with my dad but I make the effort to go every 8 month to help him out as my mom is getting very overwhelmed. I just visited him early March and I did everything I could to convince him to take Vidaza but with no success. Initially I thought he was against it due to its cost but later I discovered that his doctor sort of advised him against it. I was so angry and I thought that his doctor doesn’t know what he is doing. But later and after reading your last message, I am becoming more assured that Vidaza might not be a good idea. I thought that MDS patients die from the blood transfusion side effects, especially in my father’s case where he has very basic healthcare support. Watching him deteriorate almost by the minute is not easy. He has been suffering muscle pain. His feet are also very swollen and his skin is becoming very dark (I am suspecting because of the iron overload) His last Ferritin test was about 4900 which is very high. I am sorry to ask you and I am very sorry to remind you of this pain but did you feel the Vidaza injections helped your dad in any way? I can’t help but think that this could be an option. I am also too scared I am making the wrong decision for him. It is sort of no win situation. I am sorry again to ask you these questions but I am hoping you can give me some insight about the Vidaza injections. I am reachable at elgabbasr@gmail.com.

  I am praying for you and your family in this difficult time.

  PS. I have a 17 year old sister and she is doing her final exams that will determine which university she can join. I too have been married for 3 years and have put the subject of having kids on hold since my father got sick a year ago. I can’t feel I am in this frame of mind to be able to look after anyone else besides my father.

  April 3, 2018 at 11:51 am #36050
  Allan Romriell

  Participant

  Natalie,
  I am so sorry for the loss of your father. I lost mine 13 years ago when he was 77 from cancer. I am grateful I had the chance to know him for so many years but somehow it still wasn’t enough. He had lost his father when he was young like yourself and I know it effected him the rest of his life. I hope that you can find peace as you go though the mourning process. MDS is a strange disease and I feel for every one of us that have it and for all the family involved. I wish you all the best in your life…
  Allan

  April 12, 2018 at 1:22 pm #36187
  diana

  Participant

  Raghda,
  I was diagnosed a few months ago at the age 65. The Vidaza does/did help me. Like they said Vidaza caused hectic with my blood the first two cycles. My MDS started improving the third cycle. Gradually my blood work improved. I did complete all six cycles and have blood work once a month.
  I had four blood tranfusions/eight units.

  my first and second cycle…7 days.
  my third – six cycle……..5 days vidaza.
  I weigh around 100 pounds and my doc reduced my vidaza due to my size. I thought the reduction made a big difference….in my blood improvement and less side effects.
  Hope this helps.

  April 12, 2018 at 6:32 pm #36188
  Raghda Vanderpump

  Participant

  HI Diana,

  Thanks a lot for your note and I am very pleased the Vidaza worked for you. I am not very successful convincing my dad to take them. He is very scared that they will only deteriorate him further. After reading your message, I immediately translated it into Arabic and sent it to him. He seems to be considering the Vidaza injections now after hearing about your experience. I am sorry to ask but did you feel that the side effects were easily tolerated? I am very worried as my dad is 10 years older but he is very healthy and doesn’t suffer from any age associated diseases (Except for MDS). I would like to also know if your doctor anticipate you becoming transfusion independent as you continue taking the Vidaza? My dad needs 2x units of blood every fortnight but recently he can hardly waits a week and a half before we start finding blood donors. Thanks a lot Diana and all the best. I wish you all the best and look forward to hearing more good news about you and the rest of the patients here. I am reachable at elgabbasr@gmail.com

  April 12, 2018 at 9:41 pm #36191
  diana

  Participant

  Hi Radhda,

  I hope your father all the best.
  No, my doctor didn’t expect my excellent response. I am the opposite of your father, I resisted blood transfusion more than Vidaza. I almost died without blood transfusion. My Vidaza side effects were minimal. Vidaza is a demethylation agent, it is not real chemo. My side effects were headache, injection site irritable, and I took one or 1/2 tablet of anti nausea tablet an hour before injection. For constipation: 100mg stool softener docusate + no banana, prune juice, honey, enough water…. Constipation is the worst side effect IMHO.
  Please google Vidaza wiki, and you will know more.
  Iron overload is bad. Can your father get chealating agent to remove the iron?
  My husband took me getting Vidaza when I was very weak and skeptical about Vidaza. I would rather take a nap. Will someone accompany and encourage your father to the hospital?
  My good response is rare, and I was not badly iron load, your father may take a little longer to have response. You can phone him and encourage him every few days. Like your father, I was very healthy except for MDS.
  Dr Dawn’s podcast said that vegetable and fruit may help remove heavy metals. I try to eat more vegetable.
  My last transfusion was between cycle 2 and cycle 3. My red blood cell and hemoglobin became normal after cycle 4. Each cycle is 4 weeks.
  I cannot write comprehensively, and I apologize.

  April 14, 2018 at 11:13 pm #36204
  Cecile Huston

  Participant

  An update on my MDS, I have just taken my 99th chemo, I get 7 Vidaza and 2 clinical trial drugs each 28 day cycle, I am in remission now as my 5th BMB shows good levels all around, But I have to continue treatment to stay there, if I quit, it will reverse, my Dr. seems to think the Vidaza is the main help for me. I get it thru my port since the injections when I 1st started were breaking me out in a horrible rash. I am 75 and I do most everything I have always done but takes me longer, I do tire easily and get short of breath. what I was diagnosed with is RAEB 1 WITH COMPLEX CYTOGENETICS, RIPSS 6.5 VERY HIGH RISK. I have not had any adverse reactions other then the constipation, to me the Vidaza has given me time to get a bit more time of life, I am grateful for everyday I have. For me it has worked very well.

  April 16, 2018 at 9:58 am #36211
  Allan Romriell

  Participant

  That is great news Cecile, so happy for you. Hope it continues to work for many years to come.

  April 16, 2018 at 11:10 pm #36216
  Cecile Huston

  Participant

  Thanks Allan, my goal is 1,000 Vidaza so that would give me several more years, LOL although my heart Dr. did say he knew a woman who had been on it for 10 yrs so there is hope. My best to you as well for a healthy and long life.

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