Announcement

Collapse
No announcement yet.

Multiple Myeloma (CA) & End-Stage RF...plus..

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Multiple Myeloma (CA) & End-Stage RF...plus..

    Hello all. I do not have RF, although familiar with, from working in healthcare. But now someone very close to me and dearly loved is dealing with end-stage RF, as a secondary (and apparently common) complication of Multiple Myeloma, a rare form of cancer. He is only 45 yrs old, suffering much pain, and becoming increasingly depressed. I would welcome communication with anyone else who may also be (either as patient and/or Dr/RN/family/caregiver/other) dealing with these same problems.

  • #2
    Originally posted by Maire View Post
    Hello all. I do not have RF, although familiar with, from working in healthcare. But now someone very close to me and dearly loved is dealing with end-stage RF, as a secondary (and apparently common) complication of Multiple Myeloma, a rare form of cancer. He is only 45 yrs old, suffering much pain, and becoming increasingly depressed. I would welcome communication with anyone else who may also be (either as patient and/or Dr/RN/family/caregiver/other) dealing with these same problems.
    I am sorry to hear about your friend. Does he have to go to dialysis three times a week? Why does he suffer so much pain? Does he take medication or pain killers? For an unknown reason, I am not depressed myself, although I never know how long my present medication (Thalidomide) will work. Please reply.
    Irmgard in Montreal, Canada

    Comment


    • #3
      Hi Germano! Sorry to...

      be so absent in responding. My friend, Joseph, passed away at age 46 on Dec 23, so that was both very sad and an end to his long years of anguish. To answer your Q's: he did go to dialysis 3x wkly, but became less due to (get this!) both of his buttocks developing decubitus ulcers (ie bed or pressure sores) which is straight up due to the lack of proper nutrition and competent nursing/physical care at Oregon State Hospital (monsterous relic!). He had a rare type of cancer (causing bone plaques) called Multiple Myeloma, and this ultimately almost always leads to RF/eventual kidney failure. Joe was so painful- his joints really hugely swollen and hot to the touch, he weakened and his bones became brittle and porous; if he had fallen down he would have likely endured bone fractures (beginning at about age 41 or so). He hurt all over, his limbs especially. Near the end, his cells were "out of control"- the poor man had (for MONTHS) warty growths invading his outer eyes, and filling his ear canals- he begged for attention for these unsightly, hindering, then painful, growths- but they did nothing to very little (the minimun). Why? Because he was also a "mental patient" (ie not quite "equally human", I guess. A homeless freaking mutt on the street would have received more compassionate, competent care than many a civilly committed "psych" patient ever receives)- poor Joe tried to get an appt to have his teeth cleaned (at a clinic located ON the hosp grounds...ieNEARBY!!) and he requested this for over 9 MONTHS! He was blown off, and he said he believed it was because he had earlier refused a root canal. (ie how dare he refuse one thing and then ask for another!! We'll show YOU!!) Anyway- long story short- sad ending for my dear friend, who was lucky to even have his brother by his deathbed. There is so much to his story, and I want to shout and scream it all to the world, it is so unjust! He died there at Oregon State Hospital, and even the priest I called to do last rites blew Joe off ("I'll see him tomorrow AFTER I VISIT THE PRISON" he said. Joe passed several hours later, without benefit of clergy. Staff didn't even know to take and hold the phone for him in his last couple of days (when suddenly "they" seemed to finally realize that Joe was freaking Dieing, in Agony, really Suffering...so they gave him morphine, and basically snowed him under. He died within 72 hrs of the morphine/hospice "care", without even once seeming coherent again- nor did the staff take the phone so that loved ones could talk TO him as he lay there. They suck, and I just gotta say that the way I saw OSH pts treated, in terms of psycho-social type interactions especially: Apalling. Sub-human. Anyway, I think I've gone on enough. I have been mourning and here I can vent for a second. I'm pleased to say that rummor is the OSH is under a serious criminal/federal investigation. I pray they hammer that ancient medieval hellhole to smithereens, then build a bright, new hospital, filled with honest to God CAREGIVERS, not tenured state employees with crap attitudes (and haters of kindness, haters of the patients themselves! Many of the staff are sick nutters who are trying to save themselves!), but real nurses and healthcare staff who are taught that ALL pts come first, that all human beings are our equals. Joe, I love and miss you and will not let you die forgotten, as you lived the past 10 years of your life. Somehow I will tell your story. I thank GOD for the dialysis center/staff (Davita in Salem, Oregon: you guys ROCK! Straight up professional and competent; you treated our people like people; I know, what a concept! Thanks. Joe liked getting away for the peace and studytime. Thank you, all). Dialysis extended Joe's life for at least a year; I am eternally grateful for that year. As are others who loved him, helplessly trying to help, getting nowhere. Unbelievable. There are still nameless, voiceless thousands in psychiatric hospitals, and only WE, who are not thus hospitalized, can act and speak on behalf of these people. We must reclaim our mentally ill, as we have reclaimed our mentally retarded. I'm talking, major humanistic mental health reform.
      Germano, please feel free to write and tell me about yourself (if you wish)- I will do my best to be more reliable. Just a lot going on, you know. Thanks for your reply and I wish you all the best with what all life throws your way. God Bless (or whatever, I don't mean to offend if not "religious"!)
      Best of luck, love, joy, and enjoyment of everyday simple pleasures (man, we still have such a great planet, even if it IS getting warmer!)
      Peace- Maire O

      Comment


      • #4
        my mom had this too

        My mother had this form of cancer.I'm sorry to hear your friend has it. It was extremely painfulfor her. I asked her what the pain of cancer flelt like and she told me like scorching hot sand being rubbed into your bones. We had a close relationship.In my mom's case, at 56, unusaul brusing brought her to the dr. She was taking an oral medication. She told the family she would be ok.We didn't know the extent at first and I don't think she really filled us in.All was sort of ok for a couple months or so until she got a bad flu,she thought. I called her everyday and one day she was so sick she couldn;t talk. "Call me tomorrow,honey" 3rd day she was taken into the hosp. by ambulance. She was actually in Renal Failure and didn't know it. She was diagnosed and unfortunetly passed away 6 months later after a 5 week stay in the hosp.(I have recently been diagosed with Hemochromatosis (high iron) and in my research disicvored this a mutataion of the HFE Gene on Chromosome 6. This same chromosone also has the Multiple Myolma Gene. I found this odd. Does your friend ever have any problems with high iron?) I'm so to hav e rambled so, but I can tell you, in my experience, the Mutiple Mylemoa cancer and my mom's battle with was extremely painful. More so than with other family member's cancer. It did take her very fast.Is your friend in the hosp. or is he still at home? My prayers will certainly be with you both.QUOTE=Maire;8088]Hello all. I do not have RF, although familiar with, from working in healthcare. But now someone very close to me and dearly loved is dealing with end-stage RF, as a secondary (and apparently common) complication of Multiple Myeloma, a rare form of cancer. He is only 45 yrs old, suffering much pain, and becoming increasingly depressed. I would welcome communication with anyone else who may also be (either as patient and/or Dr/RN/family/caregiver/other) dealing with these same problems.[/QUOTE]

        Comment


        • #5
          So sorry

          Being new to this forum experience I did not see all the post on this topic. I am very sorry to hear your friend passed away. My prayers are with you and his family still.
          Originally posted by Maire View Post
          Hello all. I do not have RF, although familiar with, from working in healthcare. But now someone very close to me and dearly loved is dealing with end-stage RF, as a secondary (and apparently common) complication of Multiple Myeloma, a rare form of cancer. He is only 45 yrs old, suffering much pain, and becoming increasingly depressed. I would welcome communication with anyone else who may also be (either as patient and/or Dr/RN/family/caregiver/other) dealing with these same problems.

          Comment


          • #6
            Originally posted by Maire View Post
            be so absent in responding. My friend, Joseph, passed away at age 46 on Dec 23, so that was both very sad and an end to his long years of anguish. To answer your Q's: he did go to dialysis 3x wkly, but became less due to (get this!) both of his buttocks developing decubitus ulcers (ie bed or pressure sores) which is straight up due to the lack of proper nutrition and competent nursing/physical care at Oregon State Hospital (monsterous relic!). He had a rare type of cancer (causing bone plaques) called Multiple Myeloma, and this ultimately almost always leads to RF/eventual kidney failure. Joe was so painful- his joints really hugely swollen and hot to the touch, he weakened and his bones became brittle and porous; if he had fallen down he would have likely endured bone fractures (beginning at about age 41 or so). He hurt all over, his limbs especially. Near the end, his cells were "out of control"- the poor man had (for MONTHS) warty growths invading his outer eyes, and filling his ear canals- he begged for attention for these unsightly, hindering, then painful, growths- but they did nothing to very little (the minimun). Why? Because he was also a "mental patient" (ie not quite "equally human", I guess. A homeless freaking mutt on the street would have received more compassionate, competent care than many a civilly committed "psych" patient ever receives)- poor Joe tried to get an appt to have his teeth cleaned (at a clinic located ON the hosp grounds...ieNEARBY!!) and he requested this for over 9 MONTHS! He was blown off, and he said he believed it was because he had earlier refused a root canal. (ie how dare he refuse one thing and then ask for another!! We'll show YOU!!) Anyway- long story short- sad ending for my dear friend, who was lucky to even have his brother by his deathbed. There is so much to his story, and I want to shout and scream it all to the world, it is so unjust! He died there at Oregon State Hospital, and even the priest I called to do last rites blew Joe off ("I'll see him tomorrow AFTER I VISIT THE PRISON" he said. Joe passed several hours later, without benefit of clergy. Staff didn't even know to take and hold the phone for him in his last couple of days (when suddenly "they" seemed to finally realize that Joe was freaking Dieing, in Agony, really Suffering...so they gave him morphine, and basically snowed him under. He died within 72 hrs of the morphine/hospice "care", without even once seeming coherent again- nor did the staff take the phone so that loved ones could talk TO him as he lay there. They suck, and I just gotta say that the way I saw OSH pts treated, in terms of psycho-social type interactions especially: Apalling. Sub-human. Anyway, I think I've gone on enough. I have been mourning and here I can vent for a second. I'm pleased to say that rummor is the OSH is under a serious criminal/federal investigation. I pray they hammer that ancient medieval hellhole to smithereens, then build a bright, new hospital, filled with honest to God CAREGIVERS, not tenured state employees with crap attitudes (and haters of kindness, haters of the patients themselves! Many of the staff are sick nutters who are trying to save themselves!), but real nurses and healthcare staff who are taught that ALL pts come first, that all human beings are our equals. Joe, I love and miss you and will not let you die forgotten, as you lived the past 10 years of your life. Somehow I will tell your story. I thank GOD for the dialysis center/staff (Davita in Salem, Oregon: you guys ROCK! Straight up professional and competent; you treated our people like people; I know, what a concept! Thanks. Joe liked getting away for the peace and studytime. Thank you, all). Dialysis extended Joe's life for at least a year; I am eternally grateful for that year. As are others who loved him, helplessly trying to help, getting nowhere. Unbelievable. There are still nameless, voiceless thousands in psychiatric hospitals, and only WE, who are not thus hospitalized, can act and speak on behalf of these people. We must reclaim our mentally ill, as we have reclaimed our mentally retarded. I'm talking, major humanistic mental health reform.
            Germano, please feel free to write and tell me about yourself (if you wish)- I will do my best to be more reliable. Just a lot going on, you know. Thanks for your reply and I wish you all the best with what all life throws your way. God Bless (or whatever, I don't mean to offend if not "religious"!)
            Best of luck, love, joy, and enjoyment of everyday simple pleasures (man, we still have such a great planet, even if it IS getting warmer!)
            Peace- Maire O

            Hello,

            I have not been looking for messages for a while and now I read that your dear friend passed away on December 23. I am very sorry about this! It is scary to read what can happen to a person with multiple myeloma! I have been diagnosed two years ago. I have gone to dialysis 3 x a week since. My myeloma is under control with Thalidomide and Dexamethasone but, of course, I suffer from side effects like neuropathy in feet and fingers, dizziness, bone pain, etc. My doctor says that I have been lucky so far. I am not in a remission, though, and I wonder if I should change my regimen to Velcade which seems to give a remission, at least a longer remission than Thaliidomide.

            Sorry again about your friend!

            Germano

            Comment


            • #7
              My husband also had MM and end stage renal

              I am new to this site. My husband also has Multiple Myeloma and end stage renal. He goes to dialysis three days a week. I know the pain a person goes through with the bone pain. He is on oxycontin and morphine. We were diagnosed four years ago. The Dr's in Kansas City told me to go home and make arrangements that he wouldn't make it out of the hospital. I quit my job and I stayed by his bedside and fed him and fought for him and prayed that God would get us through. Our son was fourteen at that time and on the weekends my parents would bring him to Kansas City so he can spend time with his father. I can say one thing God blessed us with a wonderful son. He helps me take care of his father and not once complained. Our goal was to see our son graduate from high school well May 2008 my husband and I walked in and seen him graduate. My husband and I cried the whole time. It was a good cry because we made it. We did have a stem cell transplant in 2004 and that also helped. We are now going back to Kansas City every eight weeks because the cance is becoming active again. But together as a family we will fight this cancer. My husband and I have been married for 25 years and we have one beautiful son who is now eighteen. We have alot of ups and downs. Right now we are in the medicare D gap and are wondering where we are going to pay for all his meds. The oxycontin and renalgel and blood pressure meds and alot more to much to name. I told my husband that God will get us through. I know one thing that my husband does believe in God and if he dies tomorrow he will be in a wonderful place and no longer in pain with our Savior and family members. But if he gets live another day then he get to be with us. Either way he wins!!!!!! May God bless everyone on this site. Brenda Mae

              Comment


              • #8
                What a blessing you are to your husband and son, Brenda Mae! May God give you peace in the storm and guide and direct you. Your husband truly IS a winner!
                My Writings

                Comment


                • #9
                  Originally posted by Brendamae View Post
                  I am new to this site. My husband also has Multiple Myeloma and end stage renal. He goes to dialysis three days a week. I know the pain a person goes through with the bone pain. He is on oxycontin and morphine. We were diagnosed four years ago. The Dr's in Kansas City told me to go home and make arrangements that he wouldn't make it out of the hospital. I quit my job and I stayed by his bedside and fed him and fought for him and prayed that God would get us through. Our son was fourteen at that time and on the weekends my parents would bring him to Kansas City so he can spend time with his father. I can say one thing God blessed us with a wonderful son. He helps me take care of his father and not once complained. Our goal was to see our son graduate from high school well May 2008 my husband and I walked in and seen him graduate. My husband and I cried the whole time. It was a good cry because we made it. We did have a stem cell transplant in 2004 and that also helped. We are now going back to Kansas City every eight weeks because the cance is becoming active again. But together as a family we will fight this cancer. My husband and I have been married for 25 years and we have one beautiful son who is now eighteen. We have alot of ups and downs. Right now we are in the medicare D gap and are wondering where we are going to pay for all his meds. The oxycontin and renalgel and blood pressure meds and alot more to much to name. I told my husband that God will get us through. I know one thing that my husband does believe in God and if he dies tomorrow he will be in a wonderful place and no longer in pain with our Savior and family members. But if he gets live another day then he get to be with us. Either way he wins!!!!!! May God bless everyone on this site. Brenda Mae
                  You should check with the dialysis social worker and your local kidney foundation to see if they can help get the meds paid for. You have a great outlook on things, and I wish you guys the best of luck with everything! I wish more people had your outlook!
                  Shannon
                  KidneyFun // Kidney Korner // Organ donation awareness products!
                  If the world didn't suck...........We'd all fall off!

                  Comment

                  Working...
                  X