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This topic contains 12 replies, has 8 voices, and was last updated by  Rose Palazzolo 4 months, 2 weeks ago.

Viewing 13 posts - 1 through 13 (of 13 total)
  • Author
    Posts
  • #44084

    Nancee Noble
    Participant

    I was diagnosed with MDS eighteen months ago. I am 81. I get weekly injections of Procret. I have been told that Medicare will not pay for Promacta, so I don’t know what the next step will be. My last HGB was 10.7 plt 23.What platlets I do have are abnormally shaped. I would like to know if anyone else is experiencing any leg pain when at rest. I can’t get a good nights sleep because of pain. The pain is only at rest. I am tried everything I know. I am currently trying Gabapentin. Helps some.

    #44105

    Melinda Johnson
    Participant

    Hi Nancee,

    Is your pain perhaps due to low potassium? Are you getting leg cramps?

    Hope you find out soon!
    Melinda

    #44196

    Rose Palazzolo
    Participant

    Hi Nancee,
    My husband, 74, was diagnosed in June 2018. He has constant leg pain. He shuffles to walk. He has no energy and sleeps a lot during the day and night. Doctor said he shouldn’t have leg pain, yet many write here about leg pain. He’s been getting a shot of Procret each week and blood work each week. His counts just keep going down. Platelets at 32, red blood cells at 8.1. He is missing two chromosomes from this disease putting him in a very high risk. I have no answers for you, but you are not alone with the pain. I wish you well.
    Rose

    #44339

    anges
    Participant

    Hello Nancy,

    Is there a reason the doctors didn’t put your husband on Vidaza? Hope he is doing well.

    Anges

    #44377

    Nancee Noble
    Participant

    Rose; Thank you for your reassurance. I too get a shot each week and counts keep getting lower. HGB 10.0 Platlets 19 I don’t know what is next. It seems like the doctors don’t know what is next. They tell me platlet transfusion only last a few days. It is very scary and not getting sleep because of the pain does not help. Everything offered to help cannot be done because of bleeding. Thanks again.

    #44379

    tam
    Participant

    Hi Nancee. For low platelets you might want to try organic dry papaya leaf. I buy bags of organic leaves online from Starwest Botanicals, but there are other retailers. We buy paper tea bags and scoop a tablespoon of dry leaves in each bag and staple shut. Steep the papaya tea bag in hot water for 5-6 minutes. It may help. There is research showing that papaya can increase platelets. I have been drinking one cup per day for five years and my platelets have increased from where they were when I started. Give it a try — it certainly won’t hurt. I have read that two cups per day is completely safe. Good luck.

    #44380

    Teresa
    Participant

    Hi Nancee, my 84 year old mom had the same issues with pain. She is seeking alternative treatment and not only did her numbers improve but pain has gone away. Pain in her legs immediately went away after the 1st week – ARP wave therapy, Novothor and pulse magnetic fields. Hope this helps.

    #44472

    Lance Klinger
    Participant

    I also agree with you here. May be this one could be the relief of your mom pain. There is also a natural supplement I have heard which is Kratom. Does anyone try this one?

    #44694

    Nancee Noble
    Participant

    I don’t know how to add to my original post. My Oncologist has told me, at my last visit, that there is not more that they can do for me. He gives me approx. 6 months. Weekly injections of Procrit is still help slightly with the bleeding. When is over, it will be the end of what they can do. I still have very mixed feeling. I know that 82 years is a very full life. I guess I have some anxiety re: how to get to the end.

    #44695

    Teresa
    Participant

    Hi Nancee, praying for you. My mom is 84 years old and also given a 6 month prognosis in August. She is doing much better now, improved blood counts and even working out. She goes to Causenta in Scottsdale, Arizona. They have a lot of success there with late stage cancers. All the best, Teresa

    #44900

    Nancee Noble
    Participant

    adding to my previous post. My Hgb 9.8 Platlets 17. I am having extreme pain in my legs when I lay down. This means I can’t get any sleep. I am going to ask my doctor for pain pills. I truly do not know what to do. I sat in my chair half the night to get some sleep. I am open to any suggestions.

    #44989

    gfoss
    Participant

    How are you feeling now, Nancee? I hope you’ve had some improvement. My father is in a similar situation.

    Sending healing prayers.

    #45007

    Rose Palazzolo
    Participant

    Nance,
    My husbands counts have dropped. His platelets are at 10. At point where he is getting two units of platelets each week and two units of blood every other week. Pain had not gotten any better. He take oxycodine for pain every four hours and sometimes two Tylenol in between. He was on time released oxytocin but took him off that and now on fentanyl patch. Nothing is helping with the pain. He wears compression socks which give a little relief. He has found keeping pillows under his legs helps too for a bit. We got a new mattress so the feet can go up and that helps. We have been talking a lot about hospice and think this is where he is heading. I wish I could give you helping advice. But like your doctor, ours also feel there is not much they can do. He was told his MDs is in the very aggressive stage. Praying for some comfort and rest for you.

    Rose

Viewing 13 posts - 1 through 13 (of 13 total)

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