what to expect in end stage multiple myeloma

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RE: what to expect in end stage multiple myeloma

by Lloydwi on Wed Aug 08, 2007 12:00 AM

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On 7/20/2007 asmutt wrote:

My brother was diagnosed Stage IV MM spring of '03. He elected to fight the battle alternatively via faith and nutrition. Though given 6-9 mos. to live without conventional treatment, amazingly, he appeared to slow the progress of the disease. The difficulty for those around him, however, is not knowing what is going on inside his body. His nutritionist says his "tests" show him to be cancer-free but his body appears finally to be failing. Currently, he is in tremendous pain -- we surmise that many of his ribs are broken and possibly his sternum, as well. He is extremely thin and exhibits very limited upper body motion. His hands are faintly yellow. Walking is only possible with a walker and is extremely difficult. He refuses to see a traditional MD for any pain help. My mother is caring for him and has been unable to find any answers on what to expect if he begins to fail even more dramatically than he appears to be failing now. His bladder and bowel function are normal. He insists this pain is just a set back. Can anyone please give any information on what to possibly expect next? Realize it would only be speculation but surely someone has witnessed the end stages of this disease and can help us. He is only out of bed for a shower every morning -- the pain is too intense. Any info would be appreciated. Thanks.

 

RE: what to expect in end stage multiple myeloma

by Lloydwi on Wed Aug 08, 2007 12:00 AM

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On 7/20/2007 asmutt wrote:

My brother was diagnosed Stage IV MM spring of '03. He elected to fight the battle alternatively via faith and nutrition. Though given 6-9 mos. to live without conventional treatment, amazingly, he appeared to slow the progress of the disease. The difficulty for those around him, however, is not knowing what is going on inside his body. His nutritionist says his "tests" show him to be cancer-free but his body appears finally to be failing. Currently, he is in tremendous pain -- we surmise that many of his ribs are broken and possibly his sternum, as well. He is extremely thin and exhibits very limited upper body motion. His hands are faintly yellow. Walking is only possible with a walker and is extremely difficult. He refuses to see a traditional MD for any pain help. My mother is caring for him and has been unable to find any answers on what to expect if he begins to fail even more dramatically than he appears to be failing now. His bladder and bowel function are normal. He insists this pain is just a set back. Can anyone please give any information on what to possibly expect next? Realize it would only be speculation but surely someone has witnessed the end stages of this disease and can help us. He is only out of bed for a shower every morning -- the pain is too intense. Any info would be appreciated. Thanks.

I had a lot of pain at first with MM. The did bone scans and x ray. Nothing showed up. Then they gave me a radioactive dye and I had fine fractures in my: feet, ribs, lower spine.

Blood tests  showed I was low on phorspors. I took a supplement and within days the pain was less...within a month the pain was all gone.(That was in 2001)  I continue to take a low dose of the mineral and have had no further problems with pain.

The MM had sent out an "M" protien that hardenened the tubes in my kidneys (Fanconi Syndorme). The kidneys do not recycle phrospros they way they should.

I believe your brother is making a mistake by mot taking advantage of some of the new treatments avaliable at Cancer Centers.

RE: what to expect in end stage multiple myeloma

by Va30554 on Thu Jul 22, 2010 04:07 PM

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I was diagnosed in June 2010.  I have begun treatment, but if makes me sick.  I was not sick until the treatment started.  I want to know if it would be best just to live my life and avoid all of the pain related to treatment.  Do you think that your brother's treatment was worth the pain that he had to endure and did it prolong his life in a meaningful manner?

RE: what to expect in end stage multiple myeloma

by matson001 on Thu Jul 22, 2010 04:18 PM

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On Jul 22, 2010 4:07 PM Va30554 wrote:

I was diagnosed in June 2010.  I have begun treatment, but if makes me sick.  I was not sick until the treatment started.  I want to know if it would be best just to live my life and avoid all of the pain related to treatment.  Do you think that your brother's treatment was worth the pain that he had to endure and did it prolong his life in a meaningful manner?

Hi Va30554,

I was diagnosed in Sept '09 and felt sick on Cisplatin/Etopocide. The scary part was not knowing if I would ever feel better. I had Gemzar/ Carboplatin next. I definately felt better on that set of drugs.

Now I am on a clinical trial (Crizotinib for the ALK gene mutation) and feel better than I ever did. Each kind of treatment is different and every cancer is different.

I would talk to my onc about what to expect and what the next steps might be beefore deciding to abandon treatment.

I know the stats are scary, but there are a lot of people out there who have been living a life they deem "worthwhile" for several years while having stage IV lung cancer.

Are you taking Emmend? That antinausea med littereally kept me going! I also did acupunture for nausea. I slept inclined, and tried not to bend over a lot. I made it through the worst period of nausea and even gained weight.

I wish you the best in this journey. There are many of us out there willing to support you. We are going through it too.

Michelle

RE: what to expect in end stage multiple myeloma

by matson001 on Thu Jul 22, 2010 04:21 PM

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Oops, I only looked at one part of the message and not the whole thread. Sorry if my answer doen't make sense on the context of your brother.

Michelle

RE: what to expect in end stage multiple myeloma

by Anna9563 on Thu Jul 22, 2010 06:20 PM

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From Anna,

Hi Asnutt, Welcome to the group. My Dad was in the last 2 stages of MM 12 years ago. He is still alive. He didn't do natural things. He has done the conventional treatments so I can't answer your questions.  He was tired all the time and hurt from bone pain (we know now). He was also having nose bleeds. The MM so far hasn't effected his kidney's. Good luck to you and your brother on this.  See if these links will help you any:

http://www.multiple-myeloma.com/

http://myeloma.org/

Your friend,

Anna

RE: what to expect in end stage multiple myeloma

by Liz99 on Fri Jul 23, 2010 02:15 PM

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Dear Asmutt,

Those of us that have lived through the end stages, perhaps hestitated to answer because of the pain it dredges up.

I only have my personal experience, but in my research people who have end stage myeloma generally do not die from the myeloma itself. It will progress until it starts to cause problems that can often quickly result in death.

In my reading, the most common cause of death in myeloma patients is an infection... pneumonia or others. Watch for a fever and treat it.  Renal Failure, bleeding problems caused by low platelets, blood clots in the lungs and complications from fractures are also symptoms that may result in death.

In my husband's case, he had renal failure...

Hospice helped me more than anyone, even when they were only involved in the last few hours of his life.  They gave me list of symptoms of the "dying process" that had nothing really to do with  myeloma, but rather, when the body begins to shut down... it goes through a process of dying. When this begins, it usually cannot be stopped.

If I had researched it further, I would have noticed symptoms weeks prior to his death.  I think the Doctors knew, but they didn't want to tell me.

I wish your brother the very best and hope he finds peace on his journey, wherever it leads.  

Blessings to you and your family.

Liz

 

 

RE: what to expect in end stage multiple myeloma

by poppycath on Tue Jul 27, 2010 02:51 AM

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Hi Liz~~

Can you please tell me what the 'list of symptoms' was that the hospice gave you?  I'd really appreciate knowing.  Many thanks, Cath

RE: what to expect in end stage multiple myeloma

by gibby56 on Tue Jul 27, 2010 04:49 AM

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I would check the hospice sight and see if they have info to help.  This is a wonderful group for both those entering eternity and the loved ones left behind.  http://www.hospicenet.org/

I am pretty sure to have their services, a Dr. has to recommend them to the family/patient and it is usually recpmmended within the last 6 months of life expectancy.

A good book: "Sunsets"...Reflections for Life's Final Journey by Deborah Howard (A hospice nurse)  She has helped many people and their families through the process of dying.

Hope this helps you find answers.

Cary, caregiver of beloved husband, Terry

RE: what to expect in end stage multiple myeloma

by Liz99 on Tue Jul 27, 2010 12:16 PM

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Dear Cath,

This is the link to the list they gave me. 

http://www.hospicenet.org/html/preparing_for.html

It was on the hospice site, but it was a little hard to find with all the information.

Liz

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