Conflicting Information

My mom was diagnosed with MM just a few weeks ago.  I have five siblings, and each of us seems to be getting different information from doctors at her hospital in Minnesota.  We're all over the USA, so it's been difficult to coordinate the facts.  One of my brothers heard a doctor tell him that of all the cancers, MM is the most merciful because as it progresses her pain will lessen - something about the body creating a kind of self-perpetuating morphine effect.  This sounded a little weird to me, but I have no medical training myself.  I was thankful for the news.  Well, this is not what we're seeing with our mother AT ALL.  She seems to be in terrible pain ALL THE TIME.  Has anybody else out there ever heard any doctors say what my brother heard?  (about the pain lessening as the disease progresses)???? 

Good Evening New Guinea Child;

"One of my brothers heard a doctor tell him that of all the cancers, MM is the most merciful because as it progresses her pain will lessen - something about the body creating a kind of self-perpetuating morphine effect." 

I can not comment on the latter stages of MM, however, when I was Dx. the bone pain was excruciating. In fact, I fractured 9 ribs during the earlier stages just sneezing.

I will comment on Dr. Rectum's analysis of being "fortunate" enough to have MM rather than the other cancers. This "professional" should return to Bedside Manner 101 for some refresher because (s)he was sleeping during those lectures! How can one cancer create a morphine effect while others do not?

Take care;

Kevin

a morphine effect?  sounds like a line of bul@!#*$ Multiple myeloma IS a very serious disease. M/M progresses slowly in most cases. multiple myeloma can occur in different ways some classify as "protein type"and "calcium type" among others  and many other different blood protein types I have never heard of this cancer forcing the body to produce some kind of pain killer effect although this would be a good thing. Not to be insensitive but as the disease progresses ,the pain increases this is caused by lesions on the large bones making holes in them until they break "painfully" The spinal column can collapse and this is also very painful. this process continues with the bone calcium being dissolved into the blood also known as a hypercalcemic condition.at this point the kidneys.liver,heart among other organs begin to overwork thus causing "shut down" and the patient becomes disorented.confused and without treatment it could become life threatening. The protien type could be seen as "amlydiosis" this is where the organs are exposed to very high levels of protein and are unable to carry out their functions this in an advanced condition is also life threatening. It would be a good idea to seek information from many sources. learn about the specific type your dealing with and you will find all the information you need to know (or what you do not wish to know) Many people here are a wealth of information and many have learned quite a bit about multiple myeloma and in some cases maybe a little more than some doctors, good luck in your quest, best wishes  Ron

Dear New Guinea Girl,

I agree with Kevin & Ron.  If that doctor actually said that, s(he) is REALLY in the dark about MM.  There is nothing merciful about MM.  The proper treatment may help the pain, but you need to get her to a doctor who treats MM and knows what to do for her.  If we were in Minnesota, the Mayo Clinic would be our first stop.  Do whatever it takes to get her to a GOOD MM doctor.  There are many meds out there that may be able to help your Mom, but first you have to have a doctor who can figure out what is best for her individual case.   Find that doctor and get her to him/her as soon as possible.  Good luck.

Jan 

Thanks for your input, Jan.  My mom's doctors are in dialogue with doctors at the Mayo Clinic about her MM:  on their recommendation at the Mayo, her oncologist has her on VELCADE - which does seem to be helping.  I got a better answer regarding what one of them had said about MM being "merciful".  I misunderstood -- I think what was said is that once my mom goes into total renal failure, it's basically something like a 10-to-15-day-countdown-to-heaven...and at that point as her body ceases to be able to rid itself of toxins, they'll build and build and it is this process that causes her to be more or less numb to pain.  If I understood that correctly...I'm getting this third hand from another sibling... it still doesn't make any sense to me.  The other confusing point is that I've heard one doctor say she has bone cancer, but I looked MM up and it specifically says on MedNet.com that MM is NOT bone cancer... it starts in the blood cells not the bone cells... but another doctor said mom has "secondary bone cancer" because it IS now in her bones.  You know, I just want to tear my hair out.  Thanks again for taking the time to respond.  It helps me not feel so alone to know my family isn't the only one going through what we are with our mom.  -B

Thanks for your affirmation, Kevin.  That's what we're seeing with our mom, too (cracked ribs just from sneezing, etc).  The VELCADE she's on, I guess, has compromised her immune system -- flowers never made her sneeze before but they do terribly now, so we've had to throw away all the bouquets people are having delivered to her.  That's slightly off subject, but it did help to read your email where you specifically mentioned that -- I didn't understand how sneezing could do this to my mom but I do now.  As she was only diagnosed a few weeks ago, this is all very overwhelming and new to me.  Mom also now has compression fractures in her spine.  What a hideous disease.

If there is no cure for it and it only gets worse and worse, the question begging to be asked - for me - is why prolong her time here?  Perhaps I am not well-enough informed at this point; it seems to me that treatment only buys MM patients more time so they can be in more pain.  I can't bear the thought of all that is ahead for my momma.

Ron, thank you for taking the time to help me understand some more pieces to my mom's puzzle.  She has the protein kind you described.

The VELCADE they have her on seems to have helped her kidneys considerably.  But, as I said in an email to someone who responded to me earlier, I really don't understand the point of treating MM... if there is no chance of cure and it only progresses with severe pain... I love my mom PROFOUNDLY so you should know my comment is not said to be cavalier.  But I am horrified to read all that is ahead for my mom - it seems like the most merciful thing is to give her pain medication to endure whatever time she has left, but not to treat the cancer at all.  Is that a stupid and cruel thing to say?  My mom is on steady morphine now.  It's hard to talk to her because, though she recognizes me, she's obviously "high" :  easier for her, but hard for me.  -b

 

On 5/12/2008 NewGuineaChild wrote:

Thanks for your input, Jan.  My mom's doctors are in dialogue with doctors at the Mayo Clinic about her MM:  on their recommendation at the Mayo, her oncologist has her on VELCADE - which does seem to be helping.  I got a better answer regarding what one of them had said about MM being "merciful".  I misunderstood -- I think what was said is that once my mom goes into total renal failure, it's basically something like a 10-to-15-day-countdown-to-heaven...and at that point as her body ceases to be able to rid itself of toxins, they'll build and build and it is this process that causes her to be more or less numb to pain.  If I understood that correctly...I'm getting this third hand from another sibling... it still doesn't make any sense to me.  The other confusing point is that I've heard one doctor say she has bone cancer, but I looked MM up and it specifically says on MedNet.com that MM is NOT bone cancer... it starts in the blood cells not the bone cells... but another doctor said mom has "secondary bone cancer" because it IS now in her bones.  You know, I just want to tear my hair out.  Thanks again for taking the time to respond.  It helps me not feel so alone to know my family isn't the only one going through what we are with our mom.  -B

I lost my mom.  She was in ICU and the doctor told us that we should probably remove my mom from the breathing machine.  He said that she was not in pain because the body produces a chemical that numbs the pain.  We did not remove the breathing machine.  She was scared and in lots of pain.  She was not in a coma.  Then, the doctors came in and told us that we needed to find a nursing home that could take a patient on a breathing machine.  We needed to find one by the next Monday.  On Friday, she died suddenly from a heart attack and even the nurse was shocked.  Of course there was a code blue.  Nothing.  Not even a slight jump.  They said that they tried everything and there was absolutely no response.  Even her main doctor was shocked. 

It is really hard to know what the end result will be because we are the hands of one greater than we. 

My main man was in the hospital expected to not live, not supposed to be in great pain, which he validated.  Somehow, he turned the corner, and is at home causing me and his family grief.  It's the good kind.  What I have found out is that machines can scare a person to death.  So it's a good idea to talk to them if you can. Keeping a patient as calm as possible actually helps the body with its healing process. 

 Another thing that I have learned along the was is this.  If a doctor tells you that someone is in a coma, they can probably tell everything that is going on in the room, they just can't let you know they know.  I learned that from a friend that was in a coma for 30 days.

At best, these are going to be rough times, but your strength comes from a loving God.  He will see you through.

Blessings

Like you, I believe in God - and this one fact is making all the difference for me.  There is a book you might enjoy reading - or getting on audio tape - called HEAVEN by Randy Alcorn.  I listened to it on audio CD's in my car all the way up to Minnesota to visit my mom in the hospital (it takes 11 hours to listen to).  It has rocked my world.  I always have believed in heaven, but this book has changed my perspective on it and on how I spend my time now... and it has really helped me envision where my mom is going.  I bought the book for my mom to read, but she is in total denial about her condition.  I guess that's normal?  She had one of the nurses put the book as far away from her bed as possible. 

Good Morning NewGeneaChild;

The other confusing point is that I've heard one doctor say she has bone cancer, but I looked MM up and it specifically says on MedNet.com that MM is NOT bone cancer... it starts in the blood cells not the bone cells... but another doctor said mom has "secondary bone cancer" because it IS now in her bones. 

MM is a cancer of the plasma cells. Some experts consider it a cancer of the blood and rank it behind Non-Hodgekens Lymphoma as the most prevalent. Perhaps your Mom's has progressed into her bones and this is what is confusing the Dx.

Regarding your feelings about not treating her, a friend of the family was Dx. with cancer and decided to forego the chemo and radiation in keeping his quality of life and the inevitable versus the prolonged fight and the accompanying side effects. Most definately an individual choice! One that may be influenced by the patients' age and prognosis. I wish you well in your decision.

Take care;

Kevin