Looking For Answers

Hi, I am new to the post and looking for any answers. My Dad is 66 and was just diagnosed with MM. 3 months ago we were mountain biking, swimming in big waves, and were a very active family and he seemed to be very healthy. In the last 4 weeks he started to get severe back pain which started the tests that led to being diagnosed. Well, we found out that 90-95% of his plasma cells are MM and he has one bone lesion on this sternum and 2 on different vertebrae. Because of the advanced stage they quickly started him on Valcade, Dex and Zometia along with Morphine and Vicodin for his back. Can anyone help with advice to relieve his back pain? The medication does little to help and he has a really hard time sleeping at night. I think that if we could get this under control it would really help him battle this disease. My other question is, what are his chances of bringing his MM % down and controlling this disease? We have read up a lot on MM and hear stories of people living years, but also of people dying in months. The number seems almost unbeatable and we are very scared. Any help or advice would be greatly appreciated.

Had same problem: oxycontin 3 times in 24 hours and morphine every 3 and your doc can advise to go 4 oxy in 24 hours. Heat wraps did wonders for me.  My spine had lesions on every vertabrae and pain was something I could not describe...Did not take it all away but helped. I purchased at Wal Mart those wrap around body heat wraps you see on tv for bad backs and I left it on 24 hours before I needed another one. Hope this helps. Been there done that.  MMS

On 1/22/2008 jglan wrote:

Hi, I am new to the post and looking for any answers. My Dad is 66 and was just diagnosed with MM. 3 months ago we were mountain biking, swimming in big waves, and were a very active family and he seemed to be very healthy. In the last 4 weeks he started to get severe back pain which started the tests that led to being diagnosed. Well, we found out that 90-95% of his plasma cells are MM and he has one bone lesion on this sternum and 2 on different vertebrae. Because of the advanced stage they quickly started him on Valcade, Dex and Zometia along with Morphine and Vicodin for his back. Can anyone help with advice to relieve his back pain? The medication does little to help and he has a really hard time sleeping at night. I think that if we could get this under control it would really help him battle this disease. My other question is, what are his chances of bringing his MM % down and controlling this disease? We have read up a lot on MM and hear stories of people living years, but also of people dying in months. The number seems almost unbeatable and we are very scared. Any help or advice would be greatly appreciated.

 

Hi jglan~~  Getting pain under control is one of the first steps once diagnosis has been established.  I initially had a couple of radiation zaps to my spine which immediately reduced the back pain.  Then they started me on codine/ordine/etc. tablets, none of which really worked but they did give me constipation.  Then I was put on the durogesic patches and these have been my saviour.  It was started at 25mg every 72 hours - the patch was changed every three days.  That was not enough, so after a few days I was put on 50mg, then it was upped to 100mgs.  Now after 4 years of gradual incriments, I'm on 300mg every 48 hours and this works.  It enables me to live a fairly normal lifestyle with occasional top ups of Ordine 10 when I have to make a long journey by car.  Many people shy away from pain medication, and feel that they will be classed as addicts, but when you are taking this stuff for cancer pain there are no 'high's' and it really does work to control only the pain.  Listen to what the pallative care doctors and nurses advise and you will find that they truly support  people taking regular pain meds so that they never get into extremely painful situations.  They advise that it is easier to control the pain continuously rather than trying to bring an horrendous pain situation under control!  I certainly agree.  I have five crush fractures in my spine and leisons on all my bones, including my skull, but I can sleep at night and rarely wake in pain.  Discuss this with your medical people and I'm sure that they will agree.  Good luck to you all, Cath

Generally speaking, MM is not a cureable disease with the possible exception of a stem cell transplant.  Because the SCT has a high mortality of its own, especially in the elderly, it is rarely an option.  Early treatments are often effective but the disease usually returns.  So it is a constant battle using different drugs to fight recurrences.  I agree pain control is essential for quality of life.  If the vertebral fractures are bad surgery (kyphoplasty) may be an option.

Do you honestly believe that MM can be 'cured' with a transplant?? I have never seen any proof of this and in fact have been told that regardless of the treatment, there will always be Myeloma in my system - even if it can't be measured by the prevailing measuring options -- and that because of this it is imperative to continue treatment to keep me 'stable' with regard to my paraprotein level so that my other systems will not start to fail.  Basically it is my understanding that myeloma can not be cured and that real 'remission' does not occur with this form of cancer -- is this correct? 

Yes, I do.   Allo-SCT may be curative for 10-20% of patients with refractory multiple myeloma and a larger proportion of patients who are transplanted early in their disease course. The key is the allo transplant and the intense pre transplant treatment.  Again, this is not for everyone.  Generally useful in patient under 65 who are healthy and where the disease has been caught early.  Unfortunately, thats not mant patients.

Thanks for responding Oncrx.  Can you please explain to me just who you are and what your role is here on the MM message board?  Many thanks, Cath

 

On 1/24/2008 Oncrx wrote:

Yes, I do.   Allo-SCT may be curative for 10-20% of patients with refractory multiple myeloma and a larger proportion of patients who are transplanted early in their disease course. The key is the allo transplant and the intense pre transplant treatment.  Again, this is not for everyone.  Generally useful in patient under 65 who are healthy and where the disease has been caught early.  Unfortunately, thats not mant patients.

Good Evening Oncrx;

How early do you mean? And does it matter at what stage their Dx is? I understand that Stage I is not as severe as Stage III, but will the effect be the same on the MM?

Would you also describe what you mean by the intense pre transplant treatment? What is the normal routine prior to the "harvest?"

Thank you;

Kevin 

 

 

On 1/23/2008 poppy/cath wrote:

Do you honestly believe that MM can be 'cured' with a transplant?? I have never seen any proof of this and in fact have been told that regardless of the treatment, there will always be Myeloma in my system - even if it can't be measured by the prevailing measuring options -- and that because of this it is imperative to continue treatment to keep me 'stable' with regard to my paraprotein level so that my other systems will not start to fail.  Basically it is my understanding that myeloma can not be cured and that real 'remission' does not occur with this form of cancer -- is this correct? 

Good Evening Cath;

My research tells me that this is what makes all cancers so difficult to cure. The fact that the cells multiply so darn quickly. Even if the Drs. miss just one, give it some time and you're back to being in the hospital.

However, with this new drug MAPATUMUMAB or FUCOIDEN causing apoptosis (programmed cell death) perhaps this will be the answer to those cells that escape the traditional chemotherapy. We can only hope!

Take care;

Kevin

 

 

 There have been some studies that suggested earlier transplants led to better results.  Other than that, I dont think the stage really matters.  The prep for transplant has typically been HD chemo and TBI.  Very hard on the body which is why older patients are often not candidates.  Studies that looked at reduced intensity preps tended to show better tolerence but no increase in survival.  The tandem autologous, reduced intensity allogeneic transplant regimen looks very promising in terms of low mortality and high response rates.  The point is that SCT for younger, healthy MM patients is an option that should be explored.  I agree that in the absence of a SCT, MM is not really a cureable disease.