MDS patient who stopped treatment

[Bonnie Sweeting]

Hi: My name is Bonnie, and I am from Canada. I am 73, and been diagnosed with heart valve failure. Because of the MDS, I can’t have surgery, because I would die on the table. I have only been dealing mds since last November. I can’t afford the treatment, so I have to get 2 blood transfusions every 2 weeks. When I was asked what I wanted to do, I told the oncologist, I wanted to quit everything. He abruptly kicked me to the curb. I called my Dr and told him. I am lucky enough that he does palliative care. I told him the worse thing is gasping for breath like a fish out of water…therefore lots of oxygen. I am starting this thread, to let you get an idea of what I am going through. I will put another part to this when I start getting really tired and week.

[judyha]

I’m sorry you’re dealing with this horrible disease and sorry your oncologist treated you like that. I don’t know anything about the healthcare in Canada but could you get a second opinion for a oncologist from a Center of Excellence? My thoughts and prayers are with you whatever you do.

[lisab]

Hi Bonnie

I am Canadian as well. I live in Ontario and had no trouble getting assistance for my drugs. My oncology team at the hospital has bent over backwards to help me. Perhaps you should seek another opinion.
I was directed to a social worker in the cancer clinic who helped point me in the right direction.
I hope you can find this helpful.

[Bonnie Sweeting]

Update: Went to Onocologist today for final appointment. He told me that when the blood count hits 50-60 is when the sleeping 20 hrs a day will start. He also said my heart would also give out. I told him my heart was starting to throb. He was willing to give me pain meds. I told him I just take my Advil. He is going to call me in July to see how I’m doing. He also said he couldn’t tell me how long it would take from first symptoms to end. My primary care physician (also does palliative care)is going to check on me in 2 weeks. I have to remember to tell him about my hand cramping, and falling over when I sit in a chair! Thank you Judy and Lisa for their comments.

[Bonnie Sweeting]

So, Dr. called and is going to get me assessed for MAID. My husband doesn’t want me to have it, but I think he’ll change his mind later on. He asked me about pain pills, and like an idiot I said no …. a couple of days later I called him and he gav me a ‘script for morphine. I have been off treatments since May 17. I have to admit it, but I feel like I have really gone down hill since then. Today my breathing is more like a small gasp. Let you know more in a couple of weeks!

[Bonnie Sweeting]

My Dr came out and assessed me for MAID. He told me we were shooting for October 23. He told me I had really gone downhill. He has known me for 20 + years! He set me up with oxygen … it was delivered Friday pm, higher dose of morphine and nitroglycerin. A couple of things to close … next week I should be going to the hospital x-ray department to have a pick ? line put in. It is, to my understanding, an IV line that is put in your chest to administer pain meds etc. The last thing is, and yes I don’t want to hear it, because of being on oxygen, I have to disconnect everything to go outside to have a smoke. I know when I was outside today, I didn’t like the not being able to breathe, but by 5 I think my dna changed to rabid bear … not looking forward to when breathing is worse.

[bexar2120]

Thank You for Your Courage in posting the personal decision to Stop Treatment! Palliative care is accessible to the brave souls that have made this decision. I will certainly take the pain meds when My Time Comes. I have High Risk MDS and it is only matter of time before progression to leukemia.

[Jackie Seavey]

Hi, Bonnie. It is late August and I hope you’re faring well. My mom is almost 87 and was just diagnosed with MDS and Multiple Myloma. It seems the Oncologist are so eager to give treatment, install ports, and run expensive tests but do not give out information on what could symptoms be like if left untreated. My mom who has never had medical problems my whole life started with severe Anemia symptoms about 15 months ago. She also smokes (refuses to quit), is weak, and has had several blood transfusions over the past 12 weeks. She has decided to get ports and try treatments but I worry at her age, how well will she fare? Will it make her sicker? She is worried about the mounting bills. It seems my mom has encountered some of your symptoms like the hand and finger pain (she says feels like 1000 pins and needles). She also had Edema in the hands and feet that appeared out of no where. Her PC physician has lined up Hospice to talk to us in case she decides to go that route. She lives with me and my husband and are able to take care of her, but I’m in constant worry of what type of pain or new symptom is she going to have to endure. I cannot stand see her wither away like this. At times she is getting the shortness of breath but is not really active. I use a wheelchair to transport her everywhere. At 87 she says there is no quality of life anymore with my dad who passed away a decade ago. We are supposed to get a PET scan to determine at what level she is. I am reading these message boards to learn about treatment and disease symptoms hoping to understand it all better.

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