| Author | Post |
|---|
wheatley2992
Member
| Joined: | Fri May 9th, 2008 |
| Location: | |
| Posts: | 13 |
| Status: |
Offline
|
|
Posted: Sun Jun 28th, 2009 01:55 pm |
|
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?
|
DougC
Member
| Joined: | Wed Dec 26th, 2007 |
| Location: | |
| Posts: | 107 |
| Status: |
Offline
|
|
Posted: Sun Jun 28th, 2009 05:23 pm |
|
I'm sorry to read you post...that's a tough one. I think all of us take one on the chin when we read about a fellow warrior having a rough go.
I read on this site that Dr. Zangari has a trial for relapse patients. The drug involved sounds interesting.
I know some patients have had 3-5 transplants. I'm not sure how they do it, but I certainly appreciate what they do. It's those patients who blaze the trail for the rest of us. The knowlege gained from the treatment of relapse patients is the only way they'll ever find a cure for this beast...at least that's my opinion anyway.
I've not seen a collection of stats on the different subsets. I've read many studies and a few did mention Lambda as being more challenging. When a CA is added, I'm sure it must be even more difficult to treat. I thought the combination of novel drugs used in support of tandem transplants at the Huntsman and Ark had pretty much negated CA and the impact on survival. However, they're not claiming cure yet, so obviously we're all faced with what can happen. I'm also a Lambda but without CAs.
Peace to you and your wife
Doug
|
Chat Moderator
Administrator
|
Posted: Mon Jun 29th, 2009 08:25 pm |
|
Hi,
The director of the Huntsman Cancer Institute Myeloma Program, Dr. Guido Tricot, wanted me to pass on the following message. This is his opinion and advice:
"As you know, patients with t(4;14) have a poor outcome, typically due to the short duration of response. However, Velcade is an excellent drug for this disease. Before deciding to stop treatment, I think it would be good to have a second opinion so that you know whether you are doing the right thing or not."
I hope this helps somewhat. Please let me know if you have any questions.
Sincerely,
Myeloma Chat Moderator
Huntsman Cancer Institute
|
wheatley2992
Member
| Joined: | Fri May 9th, 2008 |
| Location: | |
| Posts: | 13 |
| Status: |
Offline
|
|
Posted: Mon Jun 29th, 2009 11:54 pm |
|
My wife has taken velcade twice and both times it did not work. In both cases the cancer progressed while taking it.
|
DougC
Member
| Joined: | Wed Dec 26th, 2007 |
| Location: | |
| Posts: | 107 |
| Status: |
Offline
|
|
Posted: Tue Jun 30th, 2009 01:55 am |
|
I know over on the cancercompass.com myeloma message board their are many...and it's the common belief...that Velcade, Thal and Rev can take several months before they've seen...or they advise others of. I know it's only a message baord, but there are many who'll claim it took them several months before they saw their M-spike turn. There are also several who claim their numbers went up as well before turning south. I'd recommend you post this same message over there and see what discussion you stir up.
Whatever decision you make, have no regrets.
Again, I wish you nothing but the best.
Doug
|
wheatley2992
Member
| Joined: | Fri May 9th, 2008 |
| Location: | |
| Posts: | 13 |
| Status: |
Offline
|
|
Posted: Tue Jun 30th, 2009 11:42 am |
|
Thanks for the information. Not only did my wife's numbers go up but she developed large plasmacytomas. Radiation was needed to remove them. She now has C-difficile which is being controlled by medication. She has also picked up a bad cough which is being controlled by mediation. I believe at some point you have to say enough is enough when it comes to treatment. As much as we want to believe that the drugs will work for long periods of time, it is not always true. At this point as we all know this cancer is terminal. We are not giving up we continue to pray for a miracle. It is in God's hands as it was from the very beginning. A ray of light in all of this is that our daughter is getting married in two weeks. So a prayer would be that my wife will be strong that day and she will be able to enjoy every moment.
|
DougC
Member
| Joined: | Wed Dec 26th, 2007 |
| Location: | |
| Posts: | 107 |
| Status: |
Offline
|
|
Posted: Tue Jun 30th, 2009 12:25 pm |
|
Understood. I wish you both the very best and hope she is able to make it to the wedding and enjoy it to the fullest.
Doug
|
Current time is 12:29 pm | |
|