What To Expect

My husband was diagnosed with agressive Multiple Myeloma in Feb 06.  He was apparently in an advanced state when he was diagnosed.  He had the VAD course of chemo, he then had the stem cell transplant and we felt sure that he would go into remission.  Unfortunately, the myeloma returned only five months later.  He was then put through a course of 12 and then 30 fractions of radiation therapy, plus he was put on the Thalidimide program - none of which worked.

He has been in and out of hospital over the last few weeks - due to an extremely low white cell count as well as diminished platelets.  He has had bags and bags of blood and platetlets and is now going to be put on Velcade.  Prior to his diagnosis, he went back and back and back to his GP, (who had no idea) physiotherapists, a body alignment clinic, a massage centre, and a sports injury massage expert (you name it - he tried it) looking for a reason for his chronic and debilitating pain and fatigue. 

My husband is now 63 years old and before diagnosis was a very energetic, lively man.  He can now barely walk, and at times, is so weak he cant even speak.  No-one is giving us any real answers as to how long  he has - other than to say - that the Velcade will buy hin a little time.  I need to know how much time...even a ball park figure, my husband is in complete denial (which may be a good thing) and believes he will make a full recovery.  Can anyone please give me some realistic indication of what his extent of cancer means in terms of his mortality?

 

No one can really say how long one has, especially given that this disease affects individuals differently.  Age does have a lot to do with it, and so does attitude. 

I was diagnosed in Oct of 2002.  Did the VAD, then a double stem cell transplant.  That went well, and I was in 'remission' for about 3 years.  Rather than 'remission' it was more like the 'errant' plasma cells were knocked down to a very low reading.   I was hoping for more years in 'remission'.  I am now on Revlimid and Dexamethazone.  Getting good results, so far - only been on it since Feb.07 - full dose and no noticeable side affects (yet).  I also got side tracked a couple of times with GP's thinking I had physical problems until the Myeloma was spotted.  My age is now 58.  If I can tollerate the Rev. and keep getting results, it will be used as a maintenance drug.

The important thing is to be an activist for your husbands health, do a lot of research, have a good Oncologist, and most important, he needs to stay active.  Difficult, yes, but really important.  Walking is fine. Sitting and raising the legs, or anything.   Laying around is not.   

I wish you both the best and will keep both of you in my thoughts and prayers.

 

On 4/5/2007 Vintage fj wrote:

My husband was diagnosed with agressive Multiple Myeloma in Feb 06.  He was apparently in an advanced state when he was diagnosed.  He had the VAD course of chemo, he then had the stem cell transplant and we felt sure that he would go into remission.  Unfortunately, the myeloma returned only five months later.  He was then put through a course of 12 and then 30 fractions of radiation therapy, plus he was put on the Thalidimide program - none of which worked.

He has been in and out of hospital over the last few weeks - due to an extremely low white cell count as well as diminished platelets.  He has had bags and bags of blood and platetlets and is now going to be put on Velcade.  Prior to his diagnosis, he went back and back and back to his GP, (who had no idea) physiotherapists, a body alignment clinic, a massage centre, and a sports injury massage expert (you name it - he tried it) looking for a reason for his chronic and debilitating pain and fatigue. 

My husband is now 63 years old and before diagnosis was a very energetic, lively man.  He can now barely walk, and at times, is so weak he cant even speak.  No-one is giving us any real answers as to how long  he has - other than to say - that the Velcade will buy hin a little time.  I need to know how much time...even a ball park figure, my husband is in complete denial (which may be a good thing) and believes he will make a full recovery.  Can anyone please give me some realistic indication of what his extent of cancer means in terms of his mortality?

 

I wrote recently on how much i benefitted from Velcade, it may not work the same for everyone but it did for me.  I am now in a clinical trial at Dana Farber in boston. I think it is imperative to go to a place that specializes in MM, you can look it up on the internet to see what places are closer to you.  Do not put your life on the line by relying on local Doctors, who may be very good but not specializing in MM.  This could save your life.  There are many clinical trials that are listed here on this site or on the IMS site, it is worth doing them it helps you and eventually other people with MM. Let me know what you decide to do.

My prayers will be with you.  All the best

Patricia B

I just wanted to say I know how you feel my mom was dx with multiple myeloma 6 months before she turned 55 Dec. 2004. She has had chemo, des treatments and has been in and out of hospitals since then she could not have stem cell trans. since she has bad lungs, she had a "heart attack in Jan 2007, which caused her kidneys to fail and she is currently in the hospital again major complaint "pain on the left side of her rib cage and right leg" nothing is fractured and at this point she cannot walk or sit up she has to lay flat in bed. Doctors don't say anything about how long sahe has to  live although she is like your husband and says she is not going to die! But what do you do!  All I do is pray.

 

On 4/9/2007 Patricia B. wrote:

 

On 4/5/2007 Vintage fj wrote:

My husband was diagnosed with agressive Multiple Myeloma in Feb 06.  He was apparently in an advanced state when he was diagnosed.  He had the VAD course of chemo, he then had the stem cell transplant and we felt sure that he would go into remission.  Unfortunately, the myeloma returned only five months later.  He was then put through a course of 12 and then 30 fractions of radiation therapy, plus he was put on the Thalidimide program - none of which worked.

He has been in and out of hospital over the last few weeks - due to an extremely low white cell count as well as diminished platelets.  He has had bags and bags of blood and platetlets and is now going to be put on Velcade.  Prior to his diagnosis, he went back and back and back to his GP, (who had no idea) physiotherapists, a body alignment clinic, a massage centre, and a sports injury massage expert (you name it - he tried it) looking for a reason for his chronic and debilitating pain and fatigue. 

My husband is now 63 years old and before diagnosis was a very energetic, lively man.  He can now barely walk, and at times, is so weak he cant even speak.  No-one is giving us any real answers as to how long  he has - other than to say - that the Velcade will buy hin a little time.  I need to know how much time...even a ball park figure, my husband is in complete denial (which may be a good thing) and believes he will make a full recovery.  Can anyone please give me some realistic indication of what his extent of cancer means in terms of his mortality?

 

I wrote recently on how much i benefitted from Velcade, it may not work the same for everyone but it did for me.  I am now in a clinical trial at Dana Farber in boston. I think it is imperative to go to a place that specializes in MM, you can look it up on the internet to see what places are closer to you.  Do not put your life on the line by relying on local Doctors, who may be very good but not specializing in MM.  This could save your life.  There are many clinical trials that are listed here on this site or on the IMS site, it is worth doing them it helps you and eventually other people with MM. Let me know what you decide to do.

My prayers will be with you.  All the best

Patricia B

 

I am very troubled by your letter and feel compelled to answer your message again.

First I cannot beleive that you were never referred to an oncologist.

I want to tell you this, I truly beleive that we have an enormous power within ourselves.  Every time I got Velcade I would quietly  welcome it into my body and tell myself I would not toerate side effects.  At one time i could hardly walk but through back surgery I can now walk a mile a day.  I also welcome this new drug, Nereus, it may sound dippy to some of you but I have found a positive attitude can and does help also positive vibes from your family rather than long faces and sad demeanor, my kids say to me Mom you are not going to die, and I don't beleive that I will, ha! of course when the time is right.  So pick yourself up dust yourself off and soldier on.  Love and all the very best to you. Patricia B

Dippy?

If it's dippy, dear, it's the kind of dippy we all need more of.

Hang in there.

Attitude is an amazing thing.

 

Luck helps too!

 

 

RRIk