• Debio's Avatar

    Debio posted an update

    I have been told for over a year now that I had less than 1% of myeloma showing in my blood work. I recently went to see my transplant doctor who pulled up my blood test results and told me that I show no myeloma what so ever in my blood stream. YEAH! I am a survivor but I am still a Multiple Myeloma patient and I will always be a MM patient.

    I asked my oncologist why I am still on a maintenance dose of my revlamid. He told me that test results show a better long term prognosis for MM with patients who are kept on a very low dose. He added that it is important to stay on the cutting edge of myeloma research in order to stay ahead of this cancer. I am posting this because I have read a number of your posts that have mentioned being taken off your meds completely. PLEASE ask questions of your oncologists. Although the meds have side effects I am only on 10 mg and I am having none. Being off meds might seem like a time to celebrate, but if it harms you in the long run, it isn't worth it.

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      Very good first hand information to know. Thanks for sharing, this is the type of thing most wouldn't know unless they hear it from someone who has been there.

      over 7 years ago
  • Debio's Avatar

    Debio posted an update

    I has neglected myself in the past. As a single mom who had to work 3 jobs to pay the bills, and not one of them gave me health care. I found myself in 2010, in a coma and close to death. I try now, after I am done at school, to try to take it easy. I had to learn how to walk again. I still need to use a walker to get around.

    Now, while I daily take my oral chemo, try to work and pay my bills, I find myself, as the only surviving child of my mother having to care for her. She is 80 years old. Her memory is fading, she can no longer drive. She is afraid of cooking, so I have to make most of her meals, take her to all her doctor's appointments, pay her bills and get her out everyday so that she is not trapped at home. Her doctor says she does not have dementia. It is depression. She has kind of given up. She refuses to use a walker because it makes her look "old". Me, her 53 year old daughter has to use a walker, but she at 80 is too vain to do so.

    I am finding myself, although I love her dearly, getting resentful of her choosing to stop functioning. We have no other family here. Just me and my sons. They do help when they can but at their ages, I do not feel that I should heap even more on them. Often they have had to care for me.

    Am I being selfish? How would you handle this? When do I have the right to say that the stress of her care is affecting my health? ANy supportive words would help. Are any of you dealing with something like this?

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      Hi Debio, I'm sorry your having such a time with everything, it doesn't seem fair. I had to take care of my Mom and Dad both in Hospice care as they died from cancer, 10 months apart from each other, this after my last treatment was just getting done.

      There are lots of people on this site with great information and experience. I noticed you posted this as an update, if you will please repost and click the "ask network" tab at the top of the text box. This will send the question to everyone in the site. More people will see it that way.

      Thanks for being here and posting.

      Greg P
      3x Survivor
      Team WhatNext
      Community Mgr.

      over 8 years ago
  • Debio's Avatar

    Debio posted an update

    I am thankful for this beautiful day and the chance to breath the clean crisp air. Also I am thankful for being able to experience it since I am over 3 years beyond my expected passing.

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      Yes, it's a pretty day here too. I'm glad to see you are beating the odds! I've always said that just because they say 90% chance you won't make it, I say, I'm going to be one of the 10% that do make it.

      Keep positive and keep fighting, thanks for being here on the site.

      Greg P
      3x Survivor
      Team WhatNext
      Community Mgr.

      over 8 years ago
  • Debio's Avatar

    Debio posted an update

    It is a very cold day in Florida. I am in my classroom, all bundled up and my students are complaining how cold they are. The change in weather has caused me to have an upper respiratory issue. I have a barking cough and a runny nose. My doctor has put me on Z-pac to prevent whatever this is from becoming much worse. Originally my Myeloma had metastisized into my right lung. Although there is no sign of cancer in that lung any longer, it has left me prone to pneumonia.

    With all that being said, it is a great day here. I love being with my students, breathing in the crisp cool air. It finally feels like football weather and my youngest; on the football team, just won their district championship. I didn't think I'd be alive to see him play, let alone graduate this year.

    I take chemo 21 days and then I am off for a week. I will have to be on chemo for the rest of my life. I have neurophathy and now have to walk with a walker. Sometimes I get a little depressed and then I remind myself how good it is to be alive. How, if I make a difference in one of my students lives I have made my existence worthwhile.

    Sorry I wrote so much :)

  • Debio's Avatar

    Debio posted an update

    o.k. here is my separate post about my current health concerns.

    I too am left with neuropathy after my MM. My myeloma started in my lower spine. It caused compression fractures in my lower lumbar. I have had surgery where they pumped cement into three vertebrae to stabalize them. They are hoping to to the same with many other vertibrae. It was very painful, but if I ever hope to walk without assistance it is something I have to deal with.

    Some of you have mentioned that you were on chemo and now you are done with it right now. My doctor told me because of my MM I will be on chemo the rest of my life (oral chemo). How do you manage to go without it? I do not seem to have any adverse reaction to my revlamid but occassionally I do have to deal with a bad stomach. I am on other meds too so they might be causing the problem.

    My kidneys did fail when I was first diagnosed but somehow they began to work again and I have been fine for 2 years now. It does worry me. I wonder when they might fail again.

    I had a stem cell transplant of my own cells about 1 year ago. That was a long process. That chemo I had to receive was very harsh and made me quite sick, but my cell counts were excellent and currently I have less than 1% MM in my body. I pray everyday for continued good health. I talk to my students about my health when they ask. They know I am different since I've been sick, they often what to understand why. I am open and answer any question they ask. I want them to know about MM, what the symptoms are, what it does to the body so maybe, just maybe they might help a loved one or themselves be diagnosed early. Not like me. I had to be at death's door before I was diagnosed.

  • Debio's Avatar

    Debio posted an update

    I have noticed that some people list all the problems and symptoms separately. It makes it hard to get a complete picture of what they are dealing with and when. Then there are others that have miss posted and put they have been treated for the last 5 years but they are being diagnosed only 3 years ago. Whats up with that. I believe that we can be a great support system to each other but we need to be clear, get our facts straight and post ALL the information about our current experiences in one post. When there are updates then we can add more, change more. Maybe it is part of the effects of my chemo but trying to learn information about a number of you is giving me a headache trying to follow your posts and what you are dealing with currently. I will post my current experiences in a separate post. Just trying to help us all communicate better.