conflicting information

Dear -B --

Given that your mom has only recently been diagnosed I would like to give you just a couple of hints regarding what is happening because it was the same for me.  I too have compression fractures of my spine and multiple lesions on all of the bones in my body.  Its hard NOT to think that you have bone cancer when ALL of your bones are affected!  But it doesn't matter what you call it -- the fact is that the bones are affected and that results in pain.  So I too am on a very high dose of continuous morphine, but I have reached a point where I am not experiencing continual pain and I am no longer 'high'.  Its about adjusting the morphine to the level where it kills the pain and does NOT make you 'high' -- a very fine line.  The longer I have been using the morphine - 5 years - the more I have needed as I have become immune to lower doses.  I am using Fentenal Patches and have increased them in 25mg stages as the pain increased.  Each time I reached a plateau where the pain was no longer extreme and I could participate in my usual activities -- albeit on a modified schedule, until the pain started to increase once again.  Then it was time to up the dose.  What I'm trying to say is: hang in there with the morphine for your mom will get relief and will not be 'high' -- have the doctor check the dose.  Sure, MM doesn't have a 'cure' yet but that doesn't mean that one can not live quite well even with MM -- all you have to do is read the many people who are posting on this board -- they are doing everything they can to manage the MM and continue living and enjoying life.  I was told I had 2 years from diagnosis as I was Stage III -- well, here I am 5 years later and have been on Revlimid for 21 months and feeling better than I ever have since diagnosis!!  I've had all the treatments possible - with the exception of a stem cell transplant -- and each of them have worked for a while - some longer than others.  But each one has given me a bit more time, to the point that I lived to reach treatment with Thalid, Velcade and now Revlimid -- the new novel drugs.  And who knows what will be next.  I live with the thought that someone is in the process of inventing something and I just have to stay alive long enough to benefit from it!  And low and behold, of all the drugs this latest one has been the very best for me -- I know thats not the case for everyone, but for me it works beautifully.  This is such an individualistic disease that there can be no universal cure so make sure that your mom is being treated by an oncologist who really knows about MM and all the latest treatments because only someone with this knowledge will give her the best treatment possible!!  There is hope with MM -- and there are many people who have lived far beyond the prognosis of their oncologists, so don't get locked into thinking that your mom only has weeks, months, whatever to live.  Everyone of us is different and how we approach this is will impact how long we will have, so forget about all the negativity and look to all the positive times you can still have with your mom -- make the most of every minute!!  Best wishes to you all,  Cath

Cath - WOW.  Your email really really really opened my eyes and helped me see how NEGATIVE I've been - and my 5 siblings, too.  I was so encouraged by your message to me that I immediately called a brother in Florida to read it to him - but I forgot in my happy panic that he is 2 hours ahead of me and already in bed - so I'm copying and pasting your text to an email instead and am going to send it to all my brothers and sisters for them to find when they get to their computers in the morning.  One of the biggest things I got out of what you said is that the attitudes we have now - which will of course affect our mom's attitude - will impact how she copes with this disease.  I do know she is a fighter and has said she is not ready to die.  We just thought she was in denial - I am ashamed to say...but now after reading your email and hearing how you've surpassed your initial prognosis, etc., well, I have tears in my eyes  -- for you, whom I've never even met, and for my momma whose time may have not yet come after all.  Thank you so much for your lengthly and informative and POSITIVE email to me.  I can hardly wait to dialogue with my siblings in the morning.  There is still so much we need to educate ourselves about.  I am encouraged by your story!  Bless you - and best wishes, -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

Dear B,

I fear my comments from my last post were negative, but it was a reaction to what that doctor said.  I should have gone on to explain that my husband, too, was very ill when we first found out he has MM.  I know the "tear your hair out" feeling because the disease and all the information about it comes at you so fast that your can hardly keep up with it.  You said that the Velcade appears to be helping.  That's a good sign.  My husband has been on Revlimid and Dexamethasone for 9 months and is now pretty much his old self again.  He is able to do most everything that he used to do, he just requires more rest than before.  It took about 3 or 4 months, then the meds began to work, his blood counts got better and he began feeling better.  Each case of MM is different and there are many meds out there, so if one doesn't work, another med might. 

My husband had compression fractures of T 6 & 7.  He wore a specially fitted back brace for about a month which eased the pain and healed the fractures.  This brace was molded to fit his body and was not uncomfortable, after a few minor adjustments.  He now takes Zometa to harden his bones.

You spoke of "total renal failure", have the doctors mentioned dialysis to help remove the toxins from her body before total renal failure sets in?  Our doctor said that my husband might have to have dialysis if he showed signs of renal failure.  It's an option you could discuss with the doctors.  When his blood creatinine went up , the doctor put him on a gout med called Allopurinol - 300 mg - and it brought his creatinine back to normal.

Keep the faith and God bless you and your family.  Give the meds some time and learn as much as you can about MM.  Take care.

Jan 

Hi!  Thank you for your thoughtful input.  Yes, my mom has had several rounds of dialysis...and now they are saying she no longer requires it.  Which is encouraging to all of us.  The hospital keeps saying they are going to release her to a nursing home for 2-3 weeks of rehab, but it never happens.  My mom and some of my siblings are in denial about what's next -- some of them (and my mom) talk as though she'll be able to go back to living in her little apartment by herself.  But my mom can't even go potty by herself, and she was incontinent even before her diagnosis...and was in excruciating pain, unable to bend over to unload her dishwasher or take out her trash, etc.  I read all these hopeful postings by people who seem to be able to live "normal" lives with MM...and I really do want that for my mom.  But she wasn't living a "normal" life even before the diagnosis because she was so overweight and was already in decline.  My mom is 76 years old.  I don't think that is very old, but she has so many other things that are unhealthy:  she is morbidly overweight, for one thing, and diabetic.  Being overweight is really going to be a problem for her now with her compromised bones.  Her inactivity contributed to congestive heart failure, also.  So we are just taking this one day at a time.  But the more postings I am reading, the more encouraged I become - that MM is not necessarily a "next week" death sentence for my mom.  What I am hoping for for my mom is a wonderful nursing home for rehab to help her get some strength and courage back, good doctors to monitor her meds and her condition, and then for her to become a resident in the nursing home (instead of going back to her apartment)...some place where they will treat her with the dignity she deserves, where we can all visit her often, where she will have lots of different kinds of stimulation, and where she can be comfortable and taken care of for at least five more years...or longer, if the quality of life is there for her.  This is a new hope for me.  Thanks again for your feedback.  Every little piece of the puzzle helps me see the bigger picture.  Blessings, -B

 

On 5/12/2008 NewGuineaChild wrote:

Cath - WOW.  Your email really really really opened my eyes and helped me see how NEGATIVE I've been - and my 5 siblings, too.  I was so encouraged by your message to me that I immediately called a brother in Florida to read it to him - but I forgot in my happy panic that he is 2 hours ahead of me and already in bed - so I'm copying and pasting your text to an email instead and am going to send it to all my brothers and sisters for them to find when they get to their computers in the morning.  One of the biggest things I got out of what you said is that the attitudes we have now - which will of course affect our mom's attitude - will impact how she copes with this disease.  I do know she is a fighter and has said she is not ready to die.  We just thought she was in denial - I am ashamed to say...but now after reading your email and hearing how you've surpassed your initial prognosis, etc., well, I have tears in my eyes  -- for you, whom I've never even met, and for my momma whose time may have not yet come after all.  Thank you so much for your lengthly and informative and POSITIVE email to me.  I can hardly wait to dialogue with my siblings in the morning.  There is still so much we need to educate ourselves about.  I am encouraged by your story!  Bless you - and best wishes, -B

Hi New Guinea Child

 My is name is Poppy. I was diagnosed with stage 4 MM in September 2006. I have lesions on my pelvic bone my spine and some ribs. My pelvic bone looks a piece of swiss cheese. I am in pain sometimes but not all of the time. I am now on my fourth different chemo. My white blood cell and red blood cell counts go up and down. When they are up I can receive treatment. But the chemo drives them down along with the cancer count. When they are just too low the chemo has to stop. The last time the counts went too low and the chemo was stopped, the cancer came back worse than it did when  I was first diagnosed.

I say all of this to say I'm glad everyone didn't give up on me and want to put me out of my misery back at the first set back. As long as my dr has an idea for something new to try then I'm game. When I go down I will go down swinging for the fences. I do know that as long as my body will respond to treatment there is hope, but when the organs in my body start to reject the poison being injected in me the game is over.  I am the last person in the world who wants to burden my wife and family, by extending treatment in a hopeless situation. I want my family to remember me with fond memories and not the memories of the final days of my life, if I am suffering and in a painful state. So me and my family will face that time when it comes.

I see by your latest posting here that you see where you and your siblings have realized your error in just throwing in the towel at the first sign of MM. Maybe there isn't a cure but God is still in the miracle business. He is in charge of everyone of us and our fight against MM. We need our spouses and our kids to help and support us. I know my wife is my rock and I am hers. I will pray for you and your Mom. May God Bless all of you.

You are AWESOME, Poppy.  I admire your vim.  Yes, I totally agree with you that my siblings and I must turn a corner in our thinking and get over the shock of mom's recent diagnosis - I'm trying hard to listen and learn from many sources.  You affirm the hope I am beginning to feel for my mom!  THANK YOU.  Blessings, -B

Congratulations -B!  I was afraid that I rambled on too much, but you got the message that I was saying and for that I am very happy!!  Your mom knows how much you love her and will be grateful for all the love and support that you can all give her.  Some of the best times of my life were in the first two years after I was diagnosed when my four kids and three grand children all went to extraordinary lengths to come and visit me and ring me and write me -- just to keep in touch more often than we had in the past --we ALL took the opportunity to 'sieze the moment', to 'smell the roses' and share our thoughts and feelings with one another.  We've always been a close family, but we've had the chance to become even closer, more honest with one another, more caring, more ready to let the 'little' things slip by and concentrate on what really matters to each and every one of us.  Not only am I closer with each of them, but they are all closer to one another!!  As I said, I didn't think that this would have been possible, but I was wrong.  Getting MM was a blessing, for I don't believe that we would ever have discovered this love if I hadn't faced my imminent death.  I run our local cancer support group in my city, and I have found that many people have found this same situation with their diagnosis.  While no one would wish a cancer diagnosis on anyone, there can be blessings -- and I'm not Pollyanna believe me!!  Just calling it like it is and being grateful for the magic I have discovered both within my own family and friends but also in the WONDERFUL people that I have met because I have MM!  We all share a common understanding that only those living with cancer can understand.  Here I go again, rambling!!  If I can be of any help at any time please feel free to contact me.  I have learned many things along the way which can help on the MM journey and am happy to share them with you and your family.  My love and best wishes to you all,  Cath

Hi Jan -- I just read in your message to -B that your husband was put on the gout medication Allopurinal (sp) - Progout.  I had to take it because of the kidney stone episode I experienced last month, as the urologist thought it was would stop me from producing more stones, but instead all it did was to give me GOUT!  My GP told me that the urologist should have told me that this was a possible side effect and given me something else which would have controled the gout, but he didn't.  I'm now off the medication but I still have the gout in my left big toe.  I just thought I'd let you know what happened to me in case you had something similar occur.  I hope that this has not been your husbands case and that things continue to go well for him!  Take good care, cheers, Cath

Dear Becky,  I feel so torn for you and your family.  It sounds as though your mom has had 'enough' and has chosen her own way to manage what will happen next.  Being there with her - even if she is not coherent - has to be a positive move, and I've heard many times that when people are in coma's they can still hear people talking to them, but they can not respond.  So, on that thought, if you are there playing for your momma she will know that you are there and that you are sharing your gift with her and I'm sure that she would be grateful.  And, perhaps, you will have times of clarity -- who knows?   For without the kidney treatment it certainly doesn't look promising, as well as the list of other problems that she faces - her body has been surviving for quite some time.  God be with you and your family as you face the next few weeks together.  My thoughts and prayers are with you all.  Cath