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caringcousin
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Posted: Thu Oct 8th, 2009 01:48 pm |
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my cousin, age 63, first diagnosed dec 04 - initial treatment thalidomide, then double stem cell transplant in summer of 2005, afterwards in protocol with no drug treatment after transplants; minor relapse summer of 2007 - several lesions in bones - responded well to radiation treatment and velcade short-term therapy - went into remission again - mspike levels started to increase earlier this year -but still felt okay - started on revlimid treatment to keep in check - okay for 4-6 mos then levels spiked high - and was told that best option was to participate in clinical trial (1B level of trial) of new drug CARFILZOMIB - started in beginning of September- after 1st round of treatment (infused two days first week) - became very, very ill with extreme pain in back - high blood pressure, renal function issues, etc. - docs not sure if reaction (tumor lysis syndrome) to drug or myeloma spiralling - hospitalized, had transfusions as hemoglobin levels around 6 and platelets very low - stablized after 5 days in hospital - had next two rounds of the trial drug - (cycle is 3 weeks on, one week off) - now in off week and told that myeloma is in 62% of plasma cells - meeting with doc tomorrow to discuss whether to continue in trial or try something else, although doc not that hopeful - may try velcade again.
Does anyone have any other suggestions - any other drugs or other approaches - at time of original double stem cell transplants (autologous) they stored cells for a third transplant but doc feels she's too weak to go through it.
Thanks for any ideas - we're desperate and willing to try anything to give her another chance.
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DougC
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Posted: Fri Oct 9th, 2009 01:56 am |
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Is he seeing a specialist? Or, is he being treated by a general onco? If not a specialist, that's the first change I'd make. A general onco means well, but they're not equiped to fight this fight. People with blood cancers really need to seek out a specialists. Also, check the trials listed here on this website. I believe Dr. Zangari is running a trial for relapse MM.
Anyway, I hope and pray for the best....he's obviously a fighter/warrior
DougC
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caringcousin
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Posted: Fri Oct 9th, 2009 11:55 am |
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| Thanks for your reply. She is being seen by a top mm specialist at a top mm center in nyc. However, I was hoping that there may be other ideas at other mm centers that might be of help.
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Chat Moderator
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Posted: Fri Oct 9th, 2009 08:42 pm |
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Hi,
In our opinion, it’s very likely that your cousin relapsed because she did not receive maintenance therapy after the transplants. Myeloma cells are not easily destroyed and some will survive, even after high-dose chemotherapy. The chemotherapy only targets myeloma cells that are actively dividing and not the ones that are "sleeping," or out-of-cycle. Therefore, after the transplants, we generally prescribe two years of maintenance therapy to fight those myeloma cells still lingering in the body. This increases the chances for a long remission.
We would need to see your cousin in our clinic for a full evaluation to give adequate treatment advice on where to go from here. One thing to note is that Velcade and carfilzomib are both proteasome inhibitors (although carfilzomib is a selective proteasome inhibitor), so if your cousin is not responding to carfilzomib, it’s quite possible she will not have a good response to single agent Velcade.
We would be happy to see your cousin if you are interested in getting treatment advice at Huntsman Cancer Institute’s Myeloma Clinic. To make an appointment, you can e-mail myeloma-web@hci.utah.edu or call our New Patient Coordinator at 1-800-664-8268.
Please let us know if you have any further questions. All the best to you and your cousin. There are certainly many treatment options available, but it's important to get different opinions on which would work best for your cousin (and which would likely not work) given her history and the characteristics of her particular kind of myeloma so you can head down the right road.
Chat Moderator
Huntsman Cancer Institute Myeloma Program
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caringcousin
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Posted: Sat Oct 10th, 2009 01:44 pm |
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| Thanks for the Chat moderator response. I don't know how to proceed but feel desperate to obtain other opinions. I don't want to undermine her faith in her current doc, who is a leading mm specialist at a leading mm cetner in nyc but feel we should get other opinions before it's too late to act. We think she is too sick to fly to your center but I do have all of her medical records. Would it be possible to get a consult by phone or do you have any other ideas of how to proceed. We saw her doc in NY yesterday and he is planning on continuing the carfilzomib this coming week, which would be cycle 2 of the trial, but will give final ok after results of blood drawn yesterday are back. She had a platelet infusion a week ago and her platelet counts are now 101. She did have a red cell transfusion yesterday (hemoglobin of 7.3) and will have another on Wed. Tuesday she's scheduled for an Iridia infusion (she gets them monthly, even though she did have a bout of ONJ a few years ago) and the carfilzomib. I know it's hard for you to give advice without seeing her but I'm hoping you might have some suggestions on how to proceed. Thanks so much.
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Chat Moderator
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Posted: Mon Oct 12th, 2009 10:15 pm |
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Hi caringcousin,
It is illegal for any doctor to give treatment recommendations without first seeing a patient in person, so unfortunately simply having her medical records is not enough for us to be able to give an opinion on how to proceed.
Our general advice would be that if the current treatment is not working well, it's time to look at other options before the window of opportunity to try other treatments closes.
I'm so sorry to hear that she is too ill to travel. We would be happy to help her, but it all comes back to needing to see a patient in person to give ethical and educated advice. We have some advanced tests that we would need to run at our center to get all the details on the characteristics of her particular type of myeloma. Once we have those details, we can move forward.
Please keep us updated on how everything goes and know that we're here to help if we can.
Take care,
Chat Moderator
Huntsman Cancer Institute Myeloma Program
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