Eight treatments and it just keeps coming back

My wife has had velcade(twice) d-pace(twice)stem cell (twice) thalidomide,dexamenthasone, prednisone and revlimid with lots of combinations and the myeloma just keeps coming back.  The last two treatments did not stop the cancer from growing.  There are other drugs but my wife is tired. She has been on treatments for almost two years .  The myeloma doctor has told us it is very unlikely that others drugs will help.  My wife has decided to stop treatment and enjoy the little time she has left.  Any suggestions? It would be great to talk with someone who has the same subset of myeloma as my wife.  Lambda free light, translocation 4,14.  Are there satistics kept on survival of the different subsets of myeloma as some are higher risk and more difficult to treatment than others?

From Anna,

Hi Mark, Welcome to the group. Sorry I don't have any answers for you.

Your friend,

Anna

Have you consulted with a Myeloma specialist ? If you havent it would be wise to do so. I was at a Myeloma seminar this last weekend and one of the doctors was talking about a patient that wasnt responding to anythig so he rolled the dice and mixed up the drugs in a non traditional way and the patient was getting some response. There are different kinds of MM with different outcome possibilities but I wouldnt give up. There are too many possible treatments and talented doctors out there and I would exhaust them all.

Best Wishes

Mike

 

On 6/30/2009 Chapbin wrote:

Have you consulted with a Myeloma specialist ? If you havent it would be wise to do so. I was at a Myeloma seminar this last weekend and one of the doctors was talking about a patient that wasnt responding to anythig so he rolled the dice and mixed up the drugs in a non traditional way and the patient was getting some response. There are different kinds of MM with different outcome possibilities but I wouldnt give up. There are too many possible treatments and talented doctors out there and I would exhaust them all.

Best Wishes

Mike

 

My wife has tried many combinations and has been going to Princess Margaret hospital were many come from all over Canada.  Her doctor is a myeloma specialist. Sometimes the drugs just do not or stop working.  My wife is comfortable and able to do many of the things she loves to do.  This was not happening for two years while she was going through treatments that were not working. 

In the last couple of weeks UTAboy posted a wonderful link to learn about MM and for some reason cannot find it today. I also recomend you purchase the book from Medifocus (no I have nothing to do with them) that tells you all about Multiple Myeloma.  It answers the questions you posed and many more. I think it is  www.medifocus.com

Hope this helps MMS.

On 6/30/2009 Mark2992 wrote:

My wife has had velcade(twice) d-pace(twice)stem cell (twice) thalidomide,dexamenthasone, prednisone and revlimid with lots of combinations and the myeloma just keeps coming back.  The last two treatments did not stop the cancer from growing.  There are other drugs but my wife is tired. She has been on treatments for almost two years .  The myeloma doctor has told us it is very unlikely that others drugs will help.  My wife has decided to stop treatment and enjoy the little time she has left.  Any suggestions? It would be great to talk with someone who has the same subset of myeloma as my wife.  Lambda free light, translocation 4,14.  Are there satistics kept on survival of the different subsets of myeloma as some are higher risk and more difficult to treatment than others?

 

Good Evening Mark;

The myeloma doctor has told us it is very unlikely that others drugs will help. 

There is a new drug being tested and should be available this fall. It's called POMALIDOMIDE and is third generation. Research it and find a doc who'll administer it. Even on a trial basis.  

My wife has decided to stop treatment and enjoy the little time she has left.  Any suggestions?

That's a difficult decision and one only she and you can make. But this new generation of drugs is reported to have less side effects and better results. Why not try it for six months and if the effects are too severe then take the other route.

I wish you BOTH well in your decision.

Take care;

Kevin

 

On 6/30/2009 K. C. wrote:

Good Evening Mark;

The myeloma doctor has told us it is very unlikely that others drugs will help. 

There is a new drug being tested and should be available this fall. It's called POMALIDOMIDE and is third generation. Research it and find a doc who'll administer it. Even on a trial basis.  

My wife has decided to stop treatment and enjoy the little time she has left.  Any suggestions?

That's a difficult decision and one only she and you can make. But this new generation of drugs is reported to have less side effects and better results. Why not try it for six months and if the effects are too severe then take the other route.

I wish you BOTH well in your decision.

Take care;

Kevin

 

Thanks for your message.  We are aware of this new drug.  As you said it is not available until this fall.  We will see what the fall brings. I believe it will be too late as the doctors believe that Marlene has only a couple of months to live.  Thanks again for your message.

Mark,

     My sister must have had the same type MM as your wife.  She was diagnosed in February, 2005, and she had the same treatments.  They would work for a while, and then stop working.  She told me that she had the most aggressive type.  She was still getting chemo as late as last fall, but it stopped working completely.  She decided then to stop the treatments and live as best she could.

     Last winter, she could no longer leave the house.  She slept a lot, but she could still have visits from her family, friends, and grandchildren.  She was getting weaker and weaker, and by the end of February she was confined to bed and had Hospice.  They kept her comfortable with drugs and oxygen.  She passed away in April at the age of 60.

      I know of two other people with MM.  The first developed the disease when my sister did.  He had the stem cell transplants and went into remission.  He is doing fine.  The other is my neighbor.  He has had MM for a few years and works full time just taking meds. 

      Most people with my sister's type of MM live about 3 years.  She always said she was on borrowed time once she passed the 3-year mark.  She never really gave up but was prepared for death and welcomed it at the end.

     Good luck and God bless both of you, whatever you decide.  There is no easy decision.

Nancy J

 

 

Hello,

I am writing from Germany, so please to not be angry with me due to my worse English.

In our German message board we had a discussion about novel drugs as well. Maybe one of the following can help drugs can help?!

 - Tanespicamycin + Velcade
- Perifosin +  Velcade
- Vorinostat + Velcade
- Carfilzomib (+ Revlimid + Dexa)
- Pomalidomid + Dexa


Please take a look at the following links:

http://myeloma.org/main.jsp?type=article&id=2438

http://myeloma.org/main.jsp?source=link&source_link_id=3

http://myeloma.org/main.jsp?source=link&source_link_id=3

 

What about supplements?! Maybe take a look at magarets blog as well…

http://margaret.healthblogs.org/

 

Take care and best wishes from Germany!!!

 

Kind regards

 

Good Evening Christer;

I am writing from Germany, so please to not be angry with me due to my worse English.

You're doing fine! As a matter of fact, you speak better than some of our American teenagers!

In our German message board we had a discussion about novel drugs as well. Maybe one of the following can help drugs can help?!

- Carfilzomib

This is on a trial basis at my hospital. Can you provide more information on the side effects and the results?

- Pomalidomid

This, also, is on a trial basis at my hospital. Can you provide more information on the side effects and the results?

Thank you and take care;

Kevin