Comments for MMSupport.net http://www.mmsupport.net Archive of Articles from 2002-2011 Mon, 13 Feb 2012 23:48:13 +0000 hourly 1 http://wordpress.org/?v=3.3.1 Comment on Multiple Myeloma, the End Phase by MMSupport http://www.mmsupport.net/multiple-myeloma-the-end-phase/#comment-242 MMSupport Mon, 13 Feb 2012 23:48:13 +0000 #comment-242 Hi Margery, Wow! I'm really sorry to hear about all the trouble your dad has had. The dizziness could be from too much calcium in the blood (from the bone damage). It could also be from a low HGB. How are his blood counts? What does his doctor say about all this? Has he prescribed any palliative care? Beth Our facebook group > https://www.facebook.com/groups/108654495840465/ Mailing List > http://www.myelomablog.com/myeloma-support-group/ Hi Margery,

Wow! I’m really sorry to hear about all the trouble your dad has had.

The dizziness could be from too much calcium in the blood (from the bone damage). It could also be from a low HGB. How are his blood counts?

What does his doctor say about all this? Has he prescribed any palliative care?

Beth
Our facebook group > https://www.facebook.com/groups/108654495840465/
Mailing List > http://www.myelomablog.com/myeloma-support-group/

]]> Comment on Multiple Myeloma, the End Phase by margery http://www.mmsupport.net/multiple-myeloma-the-end-phase/#comment-240 margery Sun, 12 Feb 2012 19:25:08 +0000 #comment-240 My husband was diagnosed with stage 111 myeloma Sept. 2011. He has bone involvement in several vertebra. He had 10 radiation tx's for pain management then started on Revlimid with Dexamethasone. The first cycle @ 25mg caused a rash and he was taken off and put on 15mg after the rash cleared. The 2nd cycle caused a rash but not severe and he completed that cycle. The 3rd cycle caused a rash after 5 days. It progressed to the point that his entire body was burned causing Steven Johnson syndrome and excruciating pain. He also has been taking Zometa IV once a month. He has now developed osteonecrosis of the jaw and a severe saliva gland infection from that tx. He has become fatigued to the point that he is barely able to move. His appetite has been decreasing but after the jaw problem it is of course worse. He has lost 30 lbs since Sept. He is extremely dizzy and has trouble concentrating. He is 73 yrs old. Needless to say we are to the point that chemo is not an option. I need to know if this fatigue is a passing thing or if we are on the downside of this disease. I am so glad to have found this website..if nothing else it gives one a chance to vent. Thank you My husband was diagnosed with stage 111 myeloma Sept. 2011. He has bone involvement in several vertebra. He had 10 radiation tx’s for pain management then started on Revlimid with Dexamethasone. The first cycle @ 25mg caused a rash and he was taken off and put on 15mg after the rash cleared. The 2nd cycle caused a rash but not severe and he completed that cycle. The 3rd cycle caused a rash after 5 days. It progressed to the point that his entire body was burned causing Steven Johnson syndrome and excruciating pain. He also has been taking Zometa IV once a month. He has now developed osteonecrosis of the jaw and a severe saliva gland infection from that tx. He has become fatigued to the point that he is barely able to move. His appetite has been decreasing but after the jaw problem it is of course worse. He has lost 30 lbs since Sept. He is extremely dizzy and has trouble concentrating. He is 73 yrs old. Needless to say we are to the point that chemo is not an option. I need to know if this fatigue is a passing thing or if we are on the downside of this disease. I am so glad to have found this website..if nothing else it gives one a chance to vent. Thank you

]]> Comment on Multiple Myeloma, the End Phase by Anna http://www.mmsupport.net/multiple-myeloma-the-end-phase/#comment-239 Anna Wed, 08 Feb 2012 03:24:21 +0000 #comment-239 Beth, When my Uncle was diagnosed(now 80) there was extensive damage to his neck vertabraes and to a hip. Surgery was performed on each area to rebuild with titanium rods and braces. Tumors were also removed from each area. He was treated with Chemo and Radiation and was very sick almost out of his mind for several months but pulled out of it and has had almost a year of active life with a good mental outlook. Amazingly he has had relatively no pain since the original treatments. Even now with one dose of cytoxan he has no side affects. Tommorrow he goes in for a second dose. We are hoping that this series of treatments lowers his m-protein count. But the hemotologist is concerned. We are taking each step as it comes not knowing what to expect next. He lives alone and we are managing his care from a distance of 7hrs, traveling as much as it is possible. Thanks for your comments! Anna Beth,
When my Uncle was diagnosed(now 80) there was extensive damage to his neck vertabraes and to a hip. Surgery was performed on each area to rebuild with titanium rods and braces. Tumors were also removed from each area. He was treated with Chemo and Radiation and was very sick almost out of his mind for several months but pulled out of it and has had almost a year of active life with a good mental outlook. Amazingly he has had relatively no pain since the original treatments. Even now with one dose of cytoxan he has no side affects. Tommorrow he goes in for a second dose. We are hoping that this series of treatments lowers his m-protein count. But the hemotologist is concerned. We are taking each step as it comes not knowing what to expect next. He lives alone and we are managing his care from a distance of 7hrs, traveling as much as it is possible. Thanks for your comments!
Anna

]]> Comment on Multiple Myeloma, the End Phase by MMSupport http://www.mmsupport.net/multiple-myeloma-the-end-phase/#comment-238 MMSupport Mon, 06 Feb 2012 18:31:12 +0000 #comment-238 What is your uncle's treatment history and how has he responded to past treatment? Does he have any symptoms from his MM? If you're on facebook, please join our group. We also have a mailing list (not very high volume) Our facebook group > https://www.facebook.com/groups/108654495840465/ Mailing List > http://www.myelomablog.com/myeloma-support-group/ From these places you can get more responses. - Beth What is your uncle’s treatment history and how has he responded to past treatment? Does he have any symptoms from his MM?

If you’re on facebook, please join our group. We also have a mailing list (not very high volume)
Our facebook group > https://www.facebook.com/groups/108654495840465/
Mailing List > http://www.myelomablog.com/myeloma-support-group/

From these places you can get more responses.
- Beth

]]> Comment on Multiple Myeloma, the End Phase by MMSupport http://www.mmsupport.net/multiple-myeloma-the-end-phase/#comment-237 MMSupport Mon, 06 Feb 2012 14:31:58 +0000 #comment-237 Hi Lawrence, if you're on facebook, please join our group there. We also have a mailing list that we discuss matters on. I have a very good friend who is a nurse who works in palliative care, and she has told me that the couple of myeloma patients who have come to her floor, have passed away very quietly and seemed not to be suffering at all. I'll get more details and will write about it. Our facebook group > https://www.facebook.com/groups/108654495840465/ Mailing List > http://www.myelomablog.com/myeloma-support-group/ If you want to start a myeloma blog, one of us can help you with that, too. Take care, Beth (MM since 2003) Hi Lawrence, if you’re on facebook, please join our group there. We also have a mailing list that we discuss matters on. I have a very good friend who is a nurse who works in palliative care, and she has told me that the couple of myeloma patients who have come to her floor, have passed away very quietly and seemed not to be suffering at all. I’ll get more details and will write about it.

Our facebook group > https://www.facebook.com/groups/108654495840465/
Mailing List > http://www.myelomablog.com/myeloma-support-group/

If you want to start a myeloma blog, one of us can help you with that, too.

Take care,
Beth (MM since 2003)

]]> Comment on Multiple Myeloma, the End Phase by Lawrence http://www.mmsupport.net/multiple-myeloma-the-end-phase/#comment-236 Lawrence Mon, 06 Feb 2012 04:48:16 +0000 #comment-236 Just found this site while looking for info on the last stages of MM. I was diagnosed 2 yrs ago and have had 3 lots of chemo (Velcade). I"m 68 and was working at the time I was diagnosed. I have kidney problems - about 26% function, lumbar plexoplathy and have just had a stent put in my heart after a heart attack. Not bad eh? I am interested in the final run down; it seems from other contributors that that loss of mobility i.e. weakness of the legs, and increasing tiredness are the norm, symptoms that I am experiencing at the moment. I am trying to keep up an exercise regime but I do find that it becomes a little more difficult each time. However it is very heartening to hear that the end is not necessarily painful which is a relief not only to me but to my wife and son. I intend to post regular reports in the hope that they might be of use to fellow sufferers and their supporters. Good luck to you all.javascript:grin(':grin:') Just found this site while looking for info on the last stages of MM. I was diagnosed 2 yrs ago and have had 3 lots of chemo (Velcade). I”m 68 and was working at the time I was diagnosed. I have kidney problems – about 26% function, lumbar plexoplathy and have just had a stent put in my heart after a heart attack. Not bad eh? I am interested in the final run down; it seems from other contributors that that loss of mobility i.e. weakness of the legs, and increasing tiredness are the norm, symptoms that I am experiencing at the moment. I am trying to keep up an exercise regime but I do find that it becomes a little more difficult each time. However it is very heartening to hear that the end is not necessarily painful which is a relief not only to me but to my wife and son. I intend to post regular reports in the hope that they might be of use to fellow sufferers and their supporters. Good luck to you all.javascript:grin(‘:grin:’)

]]> Comment on Multiple Myeloma, the End Phase by Anna http://www.mmsupport.net/multiple-myeloma-the-end-phase/#comment-235 Anna Sun, 05 Feb 2012 01:23:51 +0000 #comment-235 My uncle has had MM since Dec 2009 and I believe he is in his last year of life. His M-protein count was undetectable for almost a year and just within the last three months has soared upward. He was given weekly velcade treatments starting in December 2011 but his M-protein count continued to increase. So now he is on cytoxan plus velcade plus dexamethasone. Has anyone experienced this combination of drugs, and if so, what where the results? The doctor did say that if this treatment does not work there are no options left. My uncle has had MM since Dec 2009 and I believe he is in his last year of life. His M-protein count was undetectable for almost a year and just within the last three months has soared upward. He was given weekly velcade treatments starting in December 2011 but his M-protein count continued to increase. So now he is on cytoxan plus velcade plus dexamethasone. Has anyone experienced this combination of drugs, and if so, what where the results? The doctor did say that if this treatment does not work there are no options left.

]]> Comment on Multiple Myeloma, the End Phase by Kim B. http://www.mmsupport.net/multiple-myeloma-the-end-phase/#comment-234 Kim B. Thu, 02 Feb 2012 01:41:13 +0000 #comment-234 Thank you. She was in a nursing home and she passed at the age of 39 Christmas Eve morning. So I never got her moved out. She had Hospice and they were great people. She was very comfortable but mad because she passed in the home. I was the only one who stayed with her and took her out. Her family treated her like she had no say in anything and that was not right. So drive 2 hours to spend as much time as I could. I miss her but she is so much better off. She even looked better after she was gone than she did 5 hours before, she called for me to come as they said she had about 3 days, I came over spent 3 hours with her and told her I love her and see her soon. I pray for people and families facing this cancer. Thank you again. God Bless :grin: Thank you. She was in a nursing home and she passed at the age of 39 Christmas Eve morning. So I never got her moved out. She had Hospice and they were great people. She was very comfortable but mad because she passed in the home. I was the only one who stayed with her and took her out. Her family treated her like she had no say in anything and that was not right. So drive 2 hours to spend as much time as I could. I miss her but she is so much better off. She even looked better after she was gone than she did 5 hours before, she called for me to come as they said she had about 3 days, I came over spent 3 hours with her and told her I love her and see her soon. I pray for people and families facing this cancer. Thank you again. God Bless :grin:

]]> Comment on Multiple Myeloma, the End Phase by Gleni http://www.mmsupport.net/multiple-myeloma-the-end-phase/#comment-232 Gleni Mon, 30 Jan 2012 19:10:29 +0000 #comment-232 Sometimes hospice type care is referred to by some caregivers as "palliative care". This seems easier for people to accept than hospice care since hospice might have negative connotations and we often view hospice care as keeping someone comfortable in the last weeks/months of life. Since many people don't like to think of their expiration date, palliative care to help get them through a difficult time is easier to accept. Sometimes hospice type care is referred to by some caregivers as “palliative care”. This seems easier for people to accept than hospice care since hospice might have negative connotations and we often view hospice care as keeping someone comfortable in the last weeks/months of life. Since many people don’t like to think of their expiration date, palliative care to help get them through a difficult time is easier to accept.

]]> Comment on Multiple Myeloma, the End Phase by teri fawcett http://www.mmsupport.net/multiple-myeloma-the-end-phase/#comment-223 teri fawcett Sat, 07 Jan 2012 23:57:53 +0000 #comment-223 He saw his oncologist last week and again his count was too low for chemo so his doctor works on keeping his wbc/rbc count up so he can have continue that. He just came home from the hospital for the 3rd or 4th time this year with pneumonia, and still not feeling so great. I'm not sure if he's to the point of needing hospice, I think it would be helpful so my mom doesn't have to bathe him but I'm pretty sure neither would accept that right now. I will check into the hospice idea when my siblings and I agree it's time to talk to my parents about it. Thank you for suggesting that. As of now, his pain is being managed pretty well. He does his best to go to family functions but he tires easily and is weak physically. Thank you again for your response. I'm sure I'll have more questions to send you way. He saw his oncologist last week and again his count was too low for chemo so his doctor works on keeping his wbc/rbc count up so he can have continue that. He just came home from the hospital for the 3rd or 4th time this year with pneumonia, and still not feeling so great. I’m not sure if he’s to the point of needing hospice, I think it would be helpful so my mom doesn’t have to bathe him but I’m pretty sure neither would accept that right now. I will check into the hospice idea when my siblings and I agree it’s time to talk to my parents about it. Thank you for suggesting that. As of now, his pain is being managed pretty well. He does his best to go to family functions but he tires easily and is weak physically. Thank you again for your response. I’m sure I’ll have more questions to send you way.

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