Stem Cell Treatment

Att:Cath/Bob

How are you??? I just read about Stem cells making myeloma more resistant to treatment. I am rather shocked as mum may need one in the near future. What do you think about the article...You may have read it via the newsletter. WOW!!!!!

Are you feeling Ok?

Mum has been bed ridden the last few days. she is shaking pretty bad now. Why I don't know. She isn't on any treatment. What do you think.?

She is suffering from headaches, pain and weakness. ANEAMIA????

She dolled herself up for you. You may think I exaggerate sometimes but believe me she knows how to cover up symptoms.

I hate seeing her like this and the kids ask me when they get home if nan is ok.. I just keep reassurring.

Anyways we wont be attending meeting as I double booked myself. I promised my neighbour I would help her out with a garage sale..Mum wasn't going to go anyway. It would have been my husband and my self. If any important info comes up I'm sure you will tell me. Waiting on the books to come. As soon as they do I will send yours back..

Many thanks my friends

Melanie 

Yes Mel, I have read the article and I am worried about the information it contained, especially as I know of several people who are planning to have transplants.  I'm still getting people to look at the article to clarify before I make any comment because I'd hate to get something wrong, but I agree - it was a worry.

As regards to your mom, well thats one of the benefits of MM -- it seems to be the only cancer where patients don't LOOK like they have cancer! I knew that she had made herself look her best, and that she kept quietly moving in the kitchen to hide her pain -- but when she finally sat down it was obvious to me just how difficult it was for her.  And of course, when she went to stand up as we were leaving it was totally obvious that whe was an MM patient.  BUT, only to someone who is in the same situation, or is a carer who sees it regularly.

We plan to go to Melb. for the meeting and of course we will bring back the latest news.  Our daughter in law is a research doctor in cancer, and is specifically working on why some people respond to chemo and others don't.  I have forwarded the article to her for her comments.

I saw a substitute oncologist today and my bad news was that I now have osteonecrosis of the jaw -- probably aggrivated by the fact that I was on Aridia for two years.  We talked about this and Zometa, which is said to cause this even faster -- I know the statistics say that only a few people will have this happen, but gee, why do all of these things happen to me???  Not that I'm angry, more resigned I guess!!  At least I can speak from authority about all of these side effects and complications of MM from personal experience!! 

Do give Carol's oncologist a ring about her current situation.  If you don't feel confident ringing him, then get on to the GP and have these symptoms checked out.  It could just be a virus going around -- who knows what the kids might have picked up when playing with others -- or who she might have come in contact with in some other way?  We are neutropenic and suseptable to anything thats going around -- and then it manifests in a myriad of ways.  But do get it checked out.  Does she have a fever?  I take my temp twice a day, morning and night, just to be one jump ahead if things are starting to go 'down' so that I can nip it in the bud. 

Just to thank you -- I did buy that french manicure set that you recommended and although mine don't look as professional as yours, I was able to do it and will continue!!  My granddaughter - aged 8 - has been painting her nails for a couple of years and is very good, so I may ask her for help for my right hand!!  Take good care and keep in touch, Love Cath

Good Morning Melanie; 

"I just read about Stem cells making myeloma more resistant to treatment. I am rather shocked as mum may need one in the near future. What do you think about the article...You may have read it via the newsletter. WOW!!!!!"

Would you mind posting the article you refer to for others to view?

Thank you;

Kevin

Dear fellow MM buddies:

I have not read tje article you mention, but from my limited experience with MM and being around these people for the last 3+ years, I have restrained from inserting my opinion on this matter.  Why: Most of the stem cell patients with MM either do not last more than 3 -6 months or fails. There is the occasional one who sneaks through. I have my personal opinon and this is it: MM is so deadly you are only transplanting infected cells into yourself.  There is a friend here, having it here now, and I will be anxious to see how he does but his protien count was zero when they harvested his cells. Now this is just my opinoin but I have spoken with at least a dozen recipients, male and female and have not found a successful one as yet.

There are many natural remedies out there and I strongly suggest that all MM patients be strict with diet, immune system boosters, vitamins, vegetable juicing daily and keep looking.  Ihave told Cath here what I did but as this is a public board I do not want to impose my personal views as  Cancer Treatment Centers of America, are the good guys. The revlemid,velcade and other things buy more time but they have bad side effects.  Not everyone has the same reactions. So keep the faith and do not give up.  MMS

On 2/1/2008 poppy/cath wrote:

Yes Mel, I have read the article and I am worried about the information it contained, especially as I know of several people who are planning to have transplants.  I'm still getting people to look at the article to clarify before I make any comment because I'd hate to get something wrong, but I agree - it was a worry.

As regards to your mom, well thats one of the benefits of MM -- it seems to be the only cancer where patients don't LOOK like they have cancer! I knew that she had made herself look her best, and that she kept quietly moving in the kitchen to hide her pain -- but when she finally sat down it was obvious to me just how difficult it was for her.  And of course, when she went to stand up as we were leaving it was totally obvious that whe was an MM patient.  BUT, only to someone who is in the same situation, or is a carer who sees it regularly.

We plan to go to Melb. for the meeting and of course we will bring back the latest news.  Our daughter in law is a research doctor in cancer, and is specifically working on why some people respond to chemo and others don't.  I have forwarded the article to her for her comments.

I saw a substitute oncologist today and my bad news was that I now have osteonecrosis of the jaw -- probably aggrivated by the fact that I was on Aridia for two years.  We talked about this and Zometa, which is said to cause this even faster -- I know the statistics say that only a few people will have this happen, but gee, why do all of these things happen to me???  Not that I'm angry, more resigned I guess!!  At least I can speak from authority about all of these side effects and complications of MM from personal experience!! 

Do give Carol's oncologist a ring about her current situation.  If you don't feel confident ringing him, then get on to the GP and have these symptoms checked out.  It could just be a virus going around -- who knows what the kids might have picked up when playing with others -- or who she might have come in contact with in some other way?  We are neutropenic and suseptable to anything thats going around -- and then it manifests in a myriad of ways.  But do get it checked out.  Does she have a fever?  I take my temp twice a day, morning and night, just to be one jump ahead if things are starting to go 'down' so that I can nip it in the bud. 

Just to thank you -- I did buy that french manicure set that you recommended and although mine don't look as professional as yours, I was able to do it and will continue!!  My granddaughter - aged 8 - has been painting her nails for a couple of years and is very good, so I may ask her for help for my right hand!!  Take good care and keep in touch, Love Cath

Hi WendyLu,

Mum is having a break as she has just come off Thalidamide after suffering from severe side effects. She will start new treatment in a couple of weeks. Most likely Vecade as her doc thinks she may have similar side effects to Revlimide...

Remember that each patient with cancer is individual and I dont like to think of death just yet. We have a options still available.. A little but of positive energy would go a long way. We can be positive.... 

Good  Evening MMS;

I have not read the article you mention, but from my limited experience with MM and being around these people for the last 3+ years, I have restrained from inserting my opinion on this matter.  Why: Most of the stem cell patients with MM either do not last more than 3 -6 months or fails. There is the occasional one who sneaks through. I have my personal opinon and this is it: MM is so deadly you are only transplanting infected cells into yourself.  There is a friendhere, having it here now, and I will be anxious to see how he does but his protien count was zero when they harvested his cells. Now this is just my opinoin but I have spoken with at least a dozen recipients, male and female and have not found a successful one as yet.

There are many natural remedies out there and I strongly suggest that all MM patients be strict with diet, immune system boosters, vitamins, vegetable juicing daily and keep looking.  Ihave told Cath here what I did but as this is a public board I do not want to impose my personal views as  Cancer Treatment Centers of America, are the good guys. The revlemid,velcade and other things buy more time but they have bad side effects.  Not everyone has the same reactions. So keep the faith and do not give up.  MMS

I, too, have not seen the article and wish to read it very much. I hope someone here posts the site so that I may.

Can you support your 3-6 month statement? Again, I would like to read the article(s) so that I can be informed as possible.

MM is so deadly you are only transplanting infected cells into yourself.  While I can agree on the surface with this comment, my understanding of what's about to take place in my near future is that they will administer a dosage of cytoxan in an attempt to destroy as many cancer cells as possible. I will receive two weeks of nupragin shots to stimulate the production of my white cells.My whites will then be "scrubbed" for the stem cells and frozen. I will then receive an I.V. of melphalan Two to three days later they will put the thawed stems back into my body. Of course they will not destroy all the cancer cells. And I will receive some back. However, this route makes more sense to me than using my brothers near perfect HLA match and running the risk of graft vs. host. Which my research has shown to run as high as 40%. That's darn near 50% and that equates to me to be one out of two! I have enough problems, I don't want to risk graft vs. host and all the medications required to fight it.

When you say you have spoken to a dozen recipients what were their protein levels, monoclonal spike, IgG, A and M levels, bone marrow plasma cell population prior to and after the transplant? This is what will determine a successful "harvest."

I agree that the rigors of a transplant are not for the infirm or elderly, but I find your opinion that the Drs. are transplanting the majority of their patients to a death 3-6 months post transplant difficult to fathom.

Kindly support what you have written so that I may make as informed a decision as possible.

In closing I'll offer my opinion: This initial post should have been removed by Cancercompass the moment NO supporting documentation was presented with it!

I look forward to hearing from you.

Take care;

Kevin

Kevin:

I am happy to answer your queries: I should have been more clear:1. All the patients I spoke with, who  survivied after the 3-6 months, they did not die then but that is when the MM came back in full force.  Many of these, had IGA' and protein counts that were high pre strem cell  but chose to go ahead anyway.. as for the actual #'s I have not kept them as I was myself ill at the time and did not think I would be passing on information. I can only tell you that some are still alive after 18 months, but have regressed, but many have passed on.

I think Cancer compass was correct in letting this post, as yes some people are very fearful, but others will research.  Once again the person here (in my town_) who is having it, had a zero protein count, so technically he did not show any MM cells at the time of harvest. Yes they try and kill off as many of the bad cells that can be done.

I think if people wish to try Stem Cell I am for it, I am not against it I was just putting in the anectdotal evidence I have personally experienced.  I was an oncology nurse and while I never was involved in Stem Cell etc I saw the medical side of this situation. Things have come a long way since the mid 80's but they are still using many of the same onocolgy drugs with not a lot of increased results. Some of the new ones for MM look promising but they have not proven out so far. 

Multiple Myeloma is one of those things that just seems to elude the most dedicated doctors as to treatment. Stem Cell is so new. I know of a lot of experimental things but studies are a gamble. I worked with a doctor who did many MD Anderson studies and half the patients were not given the new trials and the other half recieved the trail, it is a crap shoot. I never treated MM as an oncology nurse, just myself and I  had end stage with no hope. I chose a different path to most but that was for me, and it saved my life.

  If you are wanting to try stem cell do so. But do it with the attitude you will survive, it will work for you. Diet , immune support and mental attitude are as important as the treatment. I wish you well and am sorry that several members were a little 'freaked' at the news. You have to have faith in your own choices. you wished the article I have no clue what it was but here is one.

http://www.cancer.gov/clinicaltrials/results/hdt-multiple-my

This board is for the education, support and knowledge of all cancer patients and sometimes we find out things we do not like. I am sure we have all been there.  Take care MMS

On 2/1/2008 K. C. wrote:

 

Good  Evening MMS;

I have not read the article you mention, but from my limited experience with MM and being around these people for the last 3+ years, I have restrained from inserting my opinion on this matter.  Why: Most of the stem cell patients with MM either do not last more than 3 -6 months or fails. There is the occasional one who sneaks through. I have my personal opinon and this is it: MM is so deadly you are only transplanting infected cells into yourself.  There is a friendhere, having it here now, and I will be anxious to see how he does but his protien count was zero when they harvested his cells. Now this is just my opinoin but I have spoken with at least a dozen recipients, male and female and have not found a successful one as yet.

There are many natural remedies out there and I strongly suggest that all MM patients be strict with diet, immune system boosters, vitamins, vegetable juicing daily and keep looking.  Ihave told Cath here what I did but as this is a public board I do not want to impose my personal views as  Cancer Treatment Centers of America, are the good guys. The revlemid,velcade and other things buy more time but they have bad side effects.  Not everyone has the same reactions. So keep the faith and do not give up.  MMS

I, too, have not seen the article and wish to read it very much. I hope someone here posts the site so that I may.

Can you support your 3-6 month statement? Again, I would like to read the article(s) so that I can be informed as possible.

MM is so deadly you are only transplanting infected cells into yourself.  While I can agree on the surface with this comment, my understanding of what's about to take place in my near future is that they will administer a dosage of cytoxan in an attempt to destroy as many cancer cells as possible. I will receive two weeks of nupragin shots to stimulate the production of my white cells.My whites will then be "scrubbed" for the stem cells and frozen. I will then receive an I.V. of melphalan Two to three days later they will put the thawed stems back into my body. Of course they will not destroy all the cancer cells. And I will receive some back. However, this route makes more sense to me than using my brothers near perfect HLA match and running the risk of graft vs. host. Which my research has shown to run as high as 40%. That's darn near 50% and that equates to me to be one out of two! I have enough problems, I don't want to risk graft vs. host and all the medications required to fight it.

When you say you have spoken to a dozen recipients what were their protein levels, monoclonal spike, IgG, A and M levels, bone marrow plasma cell population prior to and after the transplant? This is what will determine a successful "harvest."

I agree that the rigors of a transplant are not for the infirm or elderly, but I find your opinion that the Drs. are transplanting the majority of their patients to a death 3-6 months post transplant difficult to fathom.

Kindly support what you have written so that I may make as informed a decision as possible.

In closing I'll offer my opinion: This initial post should have been removed by Cancercompass the moment NO supporting documentation was presented with it!

I look forward to hearing from you.

Take care;

Kevin

Hi Kevin~~

I see that Mel has posted the article that she referred to in her message to me.  As you can see from my response I did not comment at that time:

Yes Mel, I have read the article and I am worried about the information it contained, especially as I know of several people who are planning to have transplants.  I'm still getting people to look at the article to clarify before I make any comment because I'd hate to get something wrong, but I agree - it was a worry.

I believed that this article needed interpretation before being discussed.  I too am sorry that MMS took it upon herself to say the negative things which she did, and I agree with you that cancercompass should have edited this response, particularly because she did not know what she was actually responding to.  Personally I can not follow the logic of her response to your following message, but I do believe that you have a lot of positive things going for your transplant.  I have often felt disadvantaged because I am not eligible for a transplant, and from my PERSONAL EXPERIENCE the people that I know who have survived the longest have been people for whom transplant has worked!!!  When I was first diagnosed I went to a seminar where there were several people who were 10 years post diagnosis -- they had all had transplants.  I sat in the seminar, knowing that this was not an option for me, and hoping that someone, somewhere, would find something that would help me!  I believe I have been very lucky, for these new 'novel' drugs ARE making a difference and I have already outlived my initial expiry date -- and the even better thing is that they are making a significant difference to newly diagnosed patients as well as to people undergoing transplants.  We are in a terrific position at the moment, and I'm sure that if you contact the specialist myeloma centres in the US they will all recommend transplant for those eligible because they know how advantageous it really is!!  Knowing you through this board, I know that you have done your research and know the facts and have made your decision accordingly.  I hope that you can follow up Mel's article and clarify it for me -- perhaps together with Craig and Paul, others who I feel have the nounce to see things clearly.  Perhaps you can even get an explaination from the people who will be preparing you for your transplant.  I look forward to hearing from you soon!  My best wishes to you, Cath