MDS and Hospice

[Jason York]

My dad is 74 years old and was diagnosed with MDS about one year ago. Initially, he was diagnosed as intermediate risk, but after several months it progressed and his oncology doctor told us he had moved into thigh risk. My wife and I relocated from Dallas back to Chicago area where I am from to be able to help my parents out as much as possible and spend as much quality time with them as possible. We knew my dad’s diagnosis was not good. I will say one of the hardest things to see was how this strong, active, a and hard working man become unable to mow his own lawn any longer and gradually not be able to check the mail, bring the garbage cans up from curb, eat the way he used to, and eventually not drive. Before this awful disease/cancer, he was enjoying retirement, active physically, and always ready to get up and go do errands for my mom, etc. This literally took his life from him. My dad definitely fought it. First, it was procrit which did nothing for my dad. Then, he started Vidaza. He completed 3 rounds of Vidaza with absolutely no change in blood counts. His oncologist told us there had been no improvement with the 3 rounds of Vidaza. He suggested trying at least a 4th round just to see. At this point, my dad had been living week after week after week dependent on blood transfusions two days each week. His red and platelets never sustained and always dropped between transfusions. Initially, it was one blood transfusion every two to three weeks. Then, as the cancer progressed he was on a schedule of two days each week of blood transfusions. His red would be around 6 and platelets around 5 each day of his transfusions. There may have been a few days where red was 7 and platelets 8 or 9. But, generally red 6 and platelets 5. Over the last month, my dad began swelling badly. His legs, hands, and abdomen. He could not get dressed without my mom helping him. He fell 3 times. He can hardly get up from his favorite chair. They tested him to see if it is fluid causing swelling or inflammation. If it is fluid, then they will tap and drain him as needed. If it is not fluid and just inflammation, then perhaps a steroid. I have researched that it is very common for patients with MDS to swell up with inflammation prior to transition from MDS to AML. My dad told my mom he wanted to stop all treatments and could no longer bare his quality of life being completely gone. He wanted my mom to be okay with his decision to stop all treatment and get on with a hospice program. This has devastated our entire family just as much as watching this awful cancer take his life from him. My dad understands that you can not have blood transfusions with hospice. I researched that blood cancer doctors are usually torn to suggest hospice for their patients even when they know treatments are not working for them, due to insurance not seeing blood transfusions as helping to keep someone comfortable and alleviate symptoms. It seems to be very controversial and blood cancer patients are the least likely to benefit from the full effects and benefits of hospice care at end of life. They say this due to it being likely that when a blood cancer patient goes on hospice care that they are on the last few days of life. The hospice nurse explained my dad would be kept comfortable and given oxygen when red drops too low. I can see why blood transfusions not being part of hospice care is controversial for terminal blood cancer patients. It is all just not right or fair. I am not sure what to expect and am so scared for my dad and family. He will not be getting his transfusions on Thursday. This will be the first one missed, since hospice just started with him. I know his levels ate going to drop too low quickly. Does anyone know about how long someone so dependent on blood transfusionz will be able to hold on with no transfusions with hospice care? Is this really just a matter of days or weeks. What will happen? I know they will keep him comfortable. I am just completely heartbroken and in shock from it all. I am so worried about my mom. They’ve been married 51 years and together 55 years. Apologize so lengthy. I am just torn up and needing to know what to expect as this hospice just began. I hate this disease and blood cancer. It is just horrific to watch a loved one go through this.

[mdsfound]

Dear Jason, Thank you for posting with information regarding your father’s health. I know this is a difficult situation for you and I would recommend that you take him to one of our Centers of Excellence in MDS for a second opinion. I don’t want him undertreated and there may be options for him to help him with his quality of life. In Chicago, we have a number of MDS Centers of Excellence that you can choose from. I am happy to arrange a preferential appointment on his behalf. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. Please email me at ahassan@mds-foundation.org. I am happy to help.

[kathryn Mullaney]

Dear Jason, I am new to this blog but my husband was diagnosed with MDS, I had never heard of it until his diagnosis,about a year and a half ago. I am trying to educate myself about the disease, but I am an RN with 50 plus years experience with knowledge of taking care of a dying patient and also dealing with the wishes of a dying patient.
i read the post from the MDS and and I understand what has been said and this is always an option! In the event your Dad does not want to try this way, it is perfectly ok to honor his wishes.I am sure the Hospice nurses have been reassuring to you and and your family as well as your Dad and I hope they have explained what you can expect.

I think one of your biggest concerns is the withholding of the blood transfusions. This is considered extraordinary and would only prolong things. Your Dad will experience probably more of his weakness that he experiences already but if so they will not push him and keep him comfortable and pain free.
As long as he is drinking some fluids without difficulty it will be enough to sustain him but once this stops he will probably just go to sleep until it is time! I hate to use the probably so much but unfortunately this process is not an exact science.

I was with both my Mom and Dad when they were dying and it was hard but I feel so blessed to have been able to do this with them.

Please remember that this process is normal, hard, but ok!!!! Your Dad will be kept comfortable and all the simple helps for the Nurse and family will be available to you all.

I will keep you all in my prayers and hope this goes well . God Bless you all

[Amy Clark]

Hi Jason,
I am sorry to hear of your dad’s decline and you and your family’s pain in watching him pass away. I will pray for all of you and especially for your dad, that he is ready and at peace. He and your mom are both blessed to have you with them.

I took the liberty of asking your question to the PA we saw today at MD Anderson and she said that everyone is different b/c of the body’s ability to learn to tolerate low levels of Hgb, but that living 1-2 weeks wouldn’t be unusual without other complications in the picture. She then said that low platelets are the same in that there is variability of outcomes, but that she has seen lower labs than 5 without the patient having problems. She didn’t give me a time frame on that one because they transfuse a patient when the plt level shows up that low in clinic.

If you need more info, consider calling the hospice group your dad is receiving services from and ask if they have an experienced RN on staff who may have worked with other patients in this situation. We used hospice just two months ago for my father-in-law and while he did not have cancer, my specific questions about the last few days we answered that way. And they held true for his passing.

I too hate this disease. Watching our (young) children anticipate and see my husband’s decline is even worse than my own pain. Your mother may feel similarly. Be good to each other. Suffering is hard. HOW God makes good things come from bad for those who love Him is certainly a mystery to me. But I know He does, and so I am holding onto that.

[Amy Clark]

Jason, please let us know how things go for all of you, the good and the difficult. We can at least pray. I certainly would appreciate your perspective. I am sure there are many others who feel the same.

[gailb]

Thinking of you and your family.

[Wendy Brizer-Maciol]

Praying for you and the family.

[Jason York]

First, I want to say thank you very much to all of you that responded to my post with words of genuine care, concern, and prayers. It does truly mean a lot to hear these words from others that are dealing with their own struggles and suffering in some way with this awful MDS cancer. It has been a whirlwind of emotions, since my dad’s decision to go on hospice due to his quality of life being taken from him after his long hard fight with this disease. I had to come to understand and respect that decision, even though it was and still is heartbreaking. He fought the MDS with treatments of Procrit, Vidaza, and blood transfusions for that last year. Unfortunately, there were no improvements for my dad with any of the treatments at all, even the Vidaza. His MDS just continued to progress each month. I am truly thankful my wife and I relocated back to the Chicago area from Dallas at the end of June 2018. This gave me some great quality time with my dad even though he was very sick and seeing his decline was difficult and will always be heart breaking. I dropped off and picked up my dad from a lot of his blood transfusion appointments before he began hospice. The anger he had from what this disease took from him was so very hard to see and still is…behind the anger is hurting and sadness just masked with anger. I can see the pain, sadness, and hurt in my dad’s eyes behind the anger. That is painful to see. Once my wife and I moved back up to Chicago this past Summer of 2018, we played cards, had dinner, and spent the whole day and evening with my parents one day each week…we called it our family game and dinner night. I would cut their grass and help take care of their lawn care this past Summer, since he was no longer able to do all these things he loved doing all the time anymore. My wife would help with their garden and helped cook or we would bring dinner from somewhere special. In the Summer and into the Fall, it was nice to see even if for a short time my dad get his mind off the MDS while we all had good laughs while talking and playing cards over dinner. He would even joke around ‘almost’ like he used to be with all of us while we played cards. Those nights of playing cards this past Summer and Fall knowing we were helping to take his mind off the MDS and spending that quality time will always be cherished. His disease just continued to progress and worsen to where he couldn’t really play cards anymore, which was around December and January. The MDS took away his appetite and he could not eat a lot at all, the MDS made him so very weak, he had skin rashes with itching, and had stomach issues a lot. So, my dad has struggled with the extreme weakness from the MDS, shortness of breath, and loss of appetite…then came suddenly over about this last month (February 2019) an extreme swelling of abdomen, legs, feet, and hands. My dad had talked about stopping treatment for his MDS for a long time now. I did not think that he would do it, but worried that he may actually get to that point if his quality of life continued to decline. Well, unfortunately he did get to that point and made his final decision once he knew my mom was okay, understood his decision, and gave her his blessing on his decision to stop treatment of his very draining two times each and every week of red blood and platelet transfusions, vidaza treatments (which did nothing for my dad). My dad’s hospice care started around 2/12/19. It seemed that with the months of Vidaza (3 rounds) and the serious dependency on blood transfusions for almost a year with none of these treatments really making any improvements at all for his quality of life, along with the sudden extreme swelling over this last month of February of his legs, abdomen, hands, and feet causing him to need a walker and not be able to walk/get around that easily at all and hardly being able to get himself up from sitting…this got him to the point of making that final decision of going to hospice in order to have some dignity and some quality of life and some peace with life before he passes. I do understand and respect his decision because that is a lot of suffering, no quality of life, and hardship doing things that unfortunately that are not even making any improvements, but it is still so hard to see and accept. My dad’s last transfusions of red blood and platelets was 2/11/19 and hospice began after that on around 2/12/19. However, on 2/18/19 he had to have a transfusion of just platelets so that the doctor would okay and allow doing the procedure to put a port in his abdomen in order to drain the fluid build up in his abdomen to make him more comfortable. The swelling in his abdomen and legs was extremely bad and caused even more suffering from this awful cancer. The procedure was done and now he gets this fluid drained from his abdomen regularly by his hospice nurses. This was necessary to make him comfortable and breathe easier with relief of the swelling in the abdomen on his diaphragm. The hospice nurse has to drain it every week as it does continue to build up, but once she drains it then he has relief from that swelling which is good. This regular draining with hospice nurses have helped a lot with his comfort. They have given him morphine for pain and ativan for calming/relaxing him in the form of a syringe that you spray under your tongue for quick relief. The hospice team and nurses are exceptional and caring. There have been so many family and friends coming to visit my dad, since he went onto hospice care on 2/12/19. The huge amount of love and support is so nice to see. My mom told me and my wife that she just doesn’t even know how to live without him as they have been together for over 50 years. She will not tell him that because she does not want him to worry at all…she wants him to feel okay and that she is there for him. My mom as not left the house since he went onto hospice except for two times. One of those times was to the hospital when they put the drain in for his abdomen and the other when my uncle was visiting my dad and the hospice nurse was there…she went for coffee with her friend. My mom and dad are best friends, husband and wife, and soul mates…been married forever. I worry about my mom a lot with this. We go to my parent’s house to visit now at least two or three times each week since the hospice began…even if it is just an hour or two visit with my mom and dad. We are all very happily doing many things for my mom and dad to help them out so that my mom can stay at home with him all the time during this time and not worry about all the errands, etc. My dad has been able to enjoy some special foods that he loves since hospice has been treating his pain and stomach discomfort. Family and friends have brought him special things he likes to eat, which is nice. His weight is so low and you can see all his bones in his shoulders and arms. The weight loss from the MDS was horrible too. The swelling with the extreme weight loss made it very difficult for him to get around. My wife and I were there on Monday night to visit. Each time I visit him, he is more and more quiet. He really looked weak and skin color very pale. He is so very quiet the last few times we have visited. He sat at the table with us for a little bit Monday night and then went to his chair with his walker and fell right asleep. He didn’t even know we left because he had fallen asleep. He just seems a lot weaker now and color is not good…and so quiet. I am glad the hospice nurses are bathing him in the shower, giving him pain meds to give him comfort, and giving him meds to keep him relaxed/calm. The quietness and weakness make me wonder what will happen next. Just such a hard thing to go through. I wanted to give an update and I am truly sorry for being so lengthy and probably rambling a lot. Thanks again to all of you who responded…it really means a lot. This week would be around week two for hospice care…I am not sure when to consider his MDS treatment ending. I just know his last red blood transfusion was 2/11/19 and last platelets 2/18/19…only due to having abdomen procedure for draining…and Hospice began on 2/12/19. Please keep my dad and family in your prayers. Thank you.

[Pat Lawson]

Jason God bless you for being such a good and loving son. It is so hard to watch how this disease takes over our loved ones. My husband was diagnosed with high risk mds with excess blasts in October 2018 and it breaks my heart to see him struggle each day to be the man he used to be. I know he worries about not being able to do all that he used to because he feels that he has no purpose in life anymore. I know it’s selfish but to me I am just happy to wake up and still have him here with me. I worry like your mom about how I will go on without him but I know that I have my kids and grandkids to keep me going. right now I don’t really think much about what the future holds because if I did I wouldn’t be strong enough to help my husband at his greatest time of need. Live life one day at time and know that you are doing the best you can for your dad and your mom. May God bless you and your family,treasure every minute that you have together and know that you are carrying on your father’s legacy and your mom will see him in your eyes and have reason to live on.

[Rose Palazzolo]

Jason,
My husband was diagnosed in June 2018 with aggressive MDs. Everything you said about your dad’s treatment is exactly the same for my husband. He was 74 when diagnosed and now 75. In February he stopped all treatment and went with hospice. The dates are almost exact, the drug treatment the same. At this time he has started using the oxygen almost constantly. He is sleeping almost all day and night and eats three times a day, but maybe a small sandwich or a Boost. He did everything, cooked meals, did the shopping, yard work, etc. he can barely shuffle to the bathroom now. He felt the same having no quality of life he rather have the platelets and blood given to people who would benefit from it. His doctor as well as the hospice nurse told me 2 weeks to a month. His vitals are good and he is on fentanyl patches and oxycodine and prednisone. It kills me each day as he goes down hill. The pain meds are just to make him comfortable but of course the disease is still there. As the blood counts continue to drop so will his condition. I’m by his side day and night. Had a lot of visitors but going to stop visitors for a few days so he can rest. We had an appointment with the MDs Excellent Center in Miami but as the appointment got closer he told me to cancel it, there was no sense in going. I have let him make all the decisions and have stood by his choices. We have no life, but for now we still have each other. Prayers to you and your dad and family.
Rose

[Jason York]

Hi Rose,

Wow…I literally am in shock reading your post because it could be my mom writing that exact post…everything is so unbelievably the same or very similar with your husband and my dad from time frames, to severity of the MDS. Initially they told us my dad’s MDS was intermediate risk, but very soon after that told us it had progressed to high risk MDS. Both your husband and my dad’s very similar active lifestyles prior to the MDS (and similar activities and prior active lifestyles), to their ages, to their time frame of diagnosis (my dad was diagnosed March 2018), and both of their decisions and same time frames of their decisions to strop treatment and go on hospice. My dad also went on hospice in February…two weeks ago – since no treatments were making any improvements. My dad was so mentally distraught and depressed from no longer having any quality of life for the last year and having to go two times a week to the blood transfusion center just to ‘sustain’ him between a 6 to 8 of hemoglobin numbers to be sure the red did not go below a 6 and make sure platelets were higher than a 5 for months and months, taking Vidaza with no improvements at all, and then going home after all that each week to not even being able to do anything at all due to severe weakness/fatigue and feeling sick constantly. My mom also respected my dad’s decision to stop treatment and go on hospice, even though it absolutely broke her heart and was devastating for all of us to have to accept the fate of this awful disease and blood cancer. It just isn’t fair to anyone suffering from this. Once my dad completed his 3rd round of Vidaza and was told by his oncologist in February that there had been no improvement at all, he just could not bare his quality of life being completely stripped from him any longer and having no improvements with any treatments. I do understand and respect that, but would rather MDS have a cure or not exist. It’s just heartbreaking to watch your loved one suffer from this. Also, we went to an MDS Excellence facility in Chicago…the University of Chicago…for a 2nd opinion. This was quite a few months back, (around October) before my dad made decision to go onto hospice care in February. The doctors at the University of Chicago told us that they would give him the same treatment that he was receiving with his current oncologist…Vidaza treatments.

As I continued reading your post, the similarities of their hospice and current conditions are so very similar too. My dad started on hospice in February too. He has been on hospice for two weeks now and each day he has become more and more weak just as you described your husband’s current condition. My dad is still getting around the house with the walker from room to room, but he has to have the walker at all times and gets very tired from just going from one room to the next. My dad is also sleeping a lot more and so much throughout the day and early to bed. He is having a very difficult time getting up from sitting and needs help a lot of the time just to stand up from sitting position. He is sleeping a lot during the day in the bed, where before he would sleep on his recliner in their family room. My dad is still drinking and eating, but just like your husband only eating extremely small meals or amounts of food. My dad is drinking water and coffee still pretty good, but eating is very minimal to little portions of food. He is becoming confused about things sometimes too. My dad had to also start using oxygen last week (during end of 2nd week since hospice started). He now uses the oxygen several times a day. My dad’s vitals are currently okay too, just as your husbands. However, oxygen readings get low, so then he uses the oxygen. The hospice nurses were bathing my dad in the shower, but recently with his progression of weakness he has to get sponge baths. At the end of last week (week two) on hospice, the hospice nurse told my mom they wanted them to have a bed come in now to just be a “step ahead” and prepared for all comforts my dad’s needs. The hospice nurses decided to have the bed ordered and come to be set up in their house to just be prepared, once they saw that he was too weak to get his showers in the bathtub anymore and sleeping most of the day in their bed in the bedroom. They have also had so many visitors of family and friends. My wife and I visited for a long time on Saturday. My dad went into the bed for part of our visit to sleep, but then came out into the family room with us and sat on his recliner. He is not the same in any way and so quiet. However, I was so thankful for that time on Saturday that we spent with him when he was sitting with us in his recliner. He talked a little to us and I was able to help him with getting him things that he needed. I am thankful for all the moments, but it is the most heartbreaking thing ever to watch. Also, you and my mom sound similar. My mom does not leave the house, since he went on hospice and is by his side for everything. She will sometimes take naps with him each day by his side when he is in their bed sleeping. I had my wife read your post because I was in shock at how similar your husband and my dad’s stories, time frames, etc. are so extremely similar. She was shocked at the similarities of everything too. We will keep you and your husband in our prayers. Thank you for reaching out. It is too bad you and my mom could not have a support group together. It sometimes is helpful when knowing someone else is going through the same very hard time as you are.

****I wanted to thank the moderator of the group for posting the links to my initial post on the facilities of Excellence in MDS treatments and offering to set up an initial meeting with one of the centers. I greatly appreciate that!! That is very thoughtful. I am not sure if you have read anymore of these posts, but we did get a 2nd opinion several month back (around October) from one of the MDS Excellence facilities…the University of Chicago and they said they would do same treatment as my dad’s oncologist was already providing for him (Vidaza). I assume that when someone has such a severe high risk MDS diagnosis with no improvements at all with all treatments that have been provided, blood count numbers staying very low, and transfusion dependent two times a week to just sustain blood numbers, then there is not much that can be done after all that. My dad fought it and tried for almost a year of treatments. Unfortunately, no treatments worked or made any improvements. I know each MDS patient may have different circumstances and therefore, may respond better to treatments provided or may not have as high risk of MDS that my dad has. Any feedback is appreciated!

[Rose Palazzolo]

Jason,
Wanted to let you know that my husband passed last week March 21. I’m posting more information in a separate post.
Hope your Dad is doing better.

Rose

[Donna Clabaugh]

To all patients and caregivers: Life is a gift from above, but death is not a punishment and it is not final. For believers the last breath here will bring the first breath in heaven.
When my husband was diagnosed with a benign neoplasm on his brain stem on our 52 wedding anniversary, his first words to me were: “Please promise to let me go. Don’t hold on.” I don’t understand how it works sometime but I have seen that sometimes a loved ones holding on seems to prolong someones departure. Our son suffered 4 long years with cancer and my husband felt that his efforts and prayers had held on to our son. The very night he prayed and turned our son over to the Father, our son passed in complete peace. For the next 8 years my husband grieved and suffered the loss. Somehow when my husband was diagnosed I knew it was time for him to go be with our son again. This made it possible for me to be prepared to let go. Fortunately the LORD gave us 11 months when the doctors had said he could pass at any given moment. It was a blessing to care for him. I took him to church and doctors visits. We only had to start hospice in the last month of his life.
I pray that all of you, like me that have MDS or MF, your journey through this will be easy and that you will know the Fathers presence.
I pray that all caregivers will have the Fathers peace.
Know that for believers there is a better life waiting for us and an eternity to enjoy it.

[Author]

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