I change the title of discussion because like i said,
i call the hospital and take this week to decide.
Tomorrow i try to have a visit with another doctor
for now the doctor we see have a discordant opinion one say to choose eloquent 1
because is much more tollerated and the periferic neuropathy is a
deabilitating side effect can really reduce quality of life
one to go on VMP because is more tested
they don't response at all of my question,
maybe it's me that i ask too much
also want to see the result of cytogenetics i hope is ready in a few days
is right what i read about second cancers seems to be correleated with the combination of
alkylating agent like melphalan + lenalidomide
and this problem dosen't afflict lenalidomide +dexametasone?
VTE with thrombosis prophyaxis from 5 to 8 % is right ?this percentual is always correlated with pulmonary embolism stroke or infarction?
Forums
Re: one week to decide the therapy for my mother
Dear Manuel,
I also take care of my Mother so I understand your concern and that you want to make the right decision.
I was diagnosed 9 years ago with Multiple Myeloma. One of the first doctors that I went to told me to begin treatment but I probably had only 2 - 4 years to live.
After that very unhappy appointment I did my research and found 2 excellent doctors that SPECIALIZED in Multiple Myeloma. They were not general Oncologists and that is very important. Please get an experienced opinion from a M/M specialist and then make your decision. You do not have to make a decision in 24 hours. You will know what to do after you and your Mother meet the RIGHT doctor.
After 9 years my M/M is still stable and I know it is because I visit the Doctors that know what the right treatment options are.
Incidentally, my Mother is from Trieste and in December she will be 102 years old. So tell your Mother she has at least 32 more years to go.
Sincerely,
Bob R.
I also take care of my Mother so I understand your concern and that you want to make the right decision.
I was diagnosed 9 years ago with Multiple Myeloma. One of the first doctors that I went to told me to begin treatment but I probably had only 2 - 4 years to live.
After that very unhappy appointment I did my research and found 2 excellent doctors that SPECIALIZED in Multiple Myeloma. They were not general Oncologists and that is very important. Please get an experienced opinion from a M/M specialist and then make your decision. You do not have to make a decision in 24 hours. You will know what to do after you and your Mother meet the RIGHT doctor.
After 9 years my M/M is still stable and I know it is because I visit the Doctors that know what the right treatment options are.
Incidentally, my Mother is from Trieste and in December she will be 102 years old. So tell your Mother she has at least 32 more years to go.
Sincerely,
Bob R.
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BOB R.
Re: one week to decide the therapy for my mother
Joe started with Revlimid -Dex -& Zometa after on year his labs were very close to normal--He has been off the Revlimid and Dex for 18 months but still takes the Zometa. NO guarantee he will not need to again use the Revlimid and Dex in the future. NOTHING is certain in life to I say go the conservative route and Pray, pray, pray. Going on 4 years now. Good luck and hope you don't have socialized medicine you your country.
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Anonymous
Re: one week to decide the therapy for my mother
Dear Manuel,
I wish you and your mother the very best of luck in this difficult journey.
My husband was diagnosed this past January with Systematic Light Chain multiple myeloma. There are many different variations - so try to understand what your mother has. He went through a couple of cycles of Rev-Velcade-Dex and on the thrid cycle they dropped the Rev due to the impact on his kidney. He was getting Velcade subQ for all but first cycle and he still ended up with neuropathy. He was refractory so had to switch to different treatment and had Velcade, Cyctoxan, Adriamycin, Epotposide, Dex. He was still refractory after 3 cycles and went to a stem cell transplant. He is on day 75 of the transplant. He is still recovering from the chemo side effects from his previous treatment, Neuropathy and Foot Hand syndrome which are debilitating. So subQ doesn't avoid Neuropathy - just reduces the % of getting (in our case, it didn't help). His chromosome abnormalities were in the middle but his Myeloma is very resistant. We are waiting for an outcome. I would go with the trial and then to transplant if it isn't working. If we could have done it over we would have gone to transplant earlier before the chemo did all the damage.
The best advice is to get a specialist from the start and I would get two opinions from two different specialists. This is a very complicated disease.
Our very best to you!
Lori
I wish you and your mother the very best of luck in this difficult journey.
My husband was diagnosed this past January with Systematic Light Chain multiple myeloma. There are many different variations - so try to understand what your mother has. He went through a couple of cycles of Rev-Velcade-Dex and on the thrid cycle they dropped the Rev due to the impact on his kidney. He was getting Velcade subQ for all but first cycle and he still ended up with neuropathy. He was refractory so had to switch to different treatment and had Velcade, Cyctoxan, Adriamycin, Epotposide, Dex. He was still refractory after 3 cycles and went to a stem cell transplant. He is on day 75 of the transplant. He is still recovering from the chemo side effects from his previous treatment, Neuropathy and Foot Hand syndrome which are debilitating. So subQ doesn't avoid Neuropathy - just reduces the % of getting (in our case, it didn't help). His chromosome abnormalities were in the middle but his Myeloma is very resistant. We are waiting for an outcome. I would go with the trial and then to transplant if it isn't working. If we could have done it over we would have gone to transplant earlier before the chemo did all the damage.
The best advice is to get a specialist from the start and I would get two opinions from two different specialists. This is a very complicated disease.
Our very best to you!
Lori
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Dexter
Re: one week to decide the therapy for my mother
[quote="Anonymous"go the conservative route and Pray, pray, pray. Going on 4 years now. Good luck and hope you don't have socialized medicine you your country.[/quote]
thanks for the support i'never be religious but i try.......
fortunally in italy we don't have to pay for the medicine it's really sad to read on this site
pepole that don't have money for the therapy is really really sad
[quote="BOB R."]Dear Manuel,
found 2 excellent doctors that SPECIALIZED in Multiple Myeloma. They were not general Oncologists and that is very important. Please get an experienced opinion from a M/M specialist and then make your decision. You do not have to make a decision in 24 hours. You will know what to do after you and your Mother meet the RIGHT doctor.
After 9 years my M/M is still stable and I know it is because I visit the Doctors that know what the right treatment options are.
Incidentally, my Mother is from Trieste and in December she will be 102 years old. So tell your Mother she has at least 32 more years to go.
Yesterday i meet one very famous doctor specialized in multiple myeloma he tell me to go on the trial
but alredy say to me that the study of elotuzumab is make in a too small number of people
for have a reliable data
On VMP he tell me that the percentual of periferic neurophaty is small
9% of grade 3 or 4 with the new system of somministration (pethema o gimema)
i don't understand when you say that my mother have 32 years to go
tomorrow i see another one doctor i think if another one tell me to go on the trial
i go in this direction
i'm happy for you the therapy working so well you have received a stem cell transplant or
standard chemiotherapy? how old are you?
[quote="Dexter"]Dear Manuel,
My husband was diagnosed this past January with Systematic Light Chain multiple myeloma. There are many different variations - so try to understand what your mother has
I'm sorry for your husband i hope the transplant working
All the doctor we see tell to us that the chromosome abnormalities dosen't have influence on
which therapy my mother have to choose
thanks for the support i'never be religious but i try.......
fortunally in italy we don't have to pay for the medicine it's really sad to read on this site
pepole that don't have money for the therapy is really really sad
[quote="BOB R."]Dear Manuel,
found 2 excellent doctors that SPECIALIZED in Multiple Myeloma. They were not general Oncologists and that is very important. Please get an experienced opinion from a M/M specialist and then make your decision. You do not have to make a decision in 24 hours. You will know what to do after you and your Mother meet the RIGHT doctor.
After 9 years my M/M is still stable and I know it is because I visit the Doctors that know what the right treatment options are.
Incidentally, my Mother is from Trieste and in December she will be 102 years old. So tell your Mother she has at least 32 more years to go.
Yesterday i meet one very famous doctor specialized in multiple myeloma he tell me to go on the trial
but alredy say to me that the study of elotuzumab is make in a too small number of people
for have a reliable data
On VMP he tell me that the percentual of periferic neurophaty is small
9% of grade 3 or 4 with the new system of somministration (pethema o gimema)
i don't understand when you say that my mother have 32 years to go
tomorrow i see another one doctor i think if another one tell me to go on the trial
i go in this direction
i'm happy for you the therapy working so well you have received a stem cell transplant or
standard chemiotherapy? how old are you?
[quote="Dexter"]Dear Manuel,
My husband was diagnosed this past January with Systematic Light Chain multiple myeloma. There are many different variations - so try to understand what your mother has
I'm sorry for your husband i hope the transplant working
All the doctor we see tell to us that the chromosome abnormalities dosen't have influence on
which therapy my mother have to choose
Re: one week to decide the therapy for my mother
Dear Manuel,
The ELOQUENT study is an exciting trial. Elotuzumab looks like a very promising drug and its side effect profile thus far appears to be quite good. I would go with the study. If it is not well tolerated or the response sub-optimal, you can always switch to a velcade-based regimen later.
It is a win-win situation and I would be highly supportive of either approach.
Good luck and let us know what your mother chooses to do!
Pete V.
The ELOQUENT study is an exciting trial. Elotuzumab looks like a very promising drug and its side effect profile thus far appears to be quite good. I would go with the study. If it is not well tolerated or the response sub-optimal, you can always switch to a velcade-based regimen later.
It is a win-win situation and I would be highly supportive of either approach.
Good luck and let us know what your mother chooses to do!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: one week to decide the therapy for my mother
my mother choose eloquent 1
we are waiting for the result of the randomization
before this decision
I meet two of the best oncologists (they both direct many trial) who are specialized in multiple myeloma:
- one told me to choose VMP, because it has been tested more, and because he says that if we end up in the trial with Elotuzumab, my mother would have to follow a hospitalized intravenous ifusion therapy, which, according to him, would lower her quality of life, and by the time we reach disease progression, Elotuzumab should be available as a second line therapy, if it shows good results.
- the other told me to choose eloquent1 because the results from phase 2 were good
(like Dr. Peter Voorhees and Dr. Ken Shain post here thanks both of you)
and he says it's worth the risk
but neither was able to tell me how and to what degree the quality of life would change based on the therapy.
My question is, aside from the time spent in the hospital for the intravenous ifusion with elotuzumab or injection with bortezomib, which of these therapies can provide a quality of life closer to that which she had prior to the disease?
we are waiting for the result of the randomization
before this decision
I meet two of the best oncologists (they both direct many trial) who are specialized in multiple myeloma:
- one told me to choose VMP, because it has been tested more, and because he says that if we end up in the trial with Elotuzumab, my mother would have to follow a hospitalized intravenous ifusion therapy, which, according to him, would lower her quality of life, and by the time we reach disease progression, Elotuzumab should be available as a second line therapy, if it shows good results.
- the other told me to choose eloquent1 because the results from phase 2 were good
(like Dr. Peter Voorhees and Dr. Ken Shain post here thanks both of you)
and he says it's worth the risk
but neither was able to tell me how and to what degree the quality of life would change based on the therapy.
My question is, aside from the time spent in the hospital for the intravenous ifusion with elotuzumab or injection with bortezomib, which of these therapies can provide a quality of life closer to that which she had prior to the disease?
Re: one week to decide the therapy for my mother
i don't have yet the result of randomization i'm waiting the call from the Hospital
and the FISH neither tommorow check if is ready
in the middle time i meet another one Doctor
(i know i'm paranoid but many doctor say different thing and i'm going out of my head)
he say to me if there are chromosome abnormalities,my mother HAVE to choose VMP and is scentifically proved that Velcade overweight some bad cytogenetics like t(4;14) and del(13q)
all the other doctor i meet before say this is not important of wich therapy choose
but only for the prognosis.
All say lenalidomide can give better quality of life than Velcade.......
What's the true here?
can you help me with this question?
in case of del(17p) there is nothing that we can do?
i don't no why they diden't make the FISH before if is so important
sorry for all this question and thank you
and the FISH neither tommorow check if is ready
in the middle time i meet another one Doctor
(i know i'm paranoid but many doctor say different thing and i'm going out of my head)
he say to me if there are chromosome abnormalities,my mother HAVE to choose VMP and is scentifically proved that Velcade overweight some bad cytogenetics like t(4;14) and del(13q)
all the other doctor i meet before say this is not important of wich therapy choose
but only for the prognosis.
All say lenalidomide can give better quality of life than Velcade.......
What's the true here?
can you help me with this question?
in case of del(17p) there is nothing that we can do?
i don't no why they diden't make the FISH before if is so important
sorry for all this question and thank you
Re: one week to decide the therapy for my mother
my mother is randomized in the Rd arms
in the FISH there is no evidence of chromosome abnormalities
i hope all doing whell.......
in the FISH there is no evidence of chromosome abnormalities
i hope all doing whell.......
Re: one week to decide the therapy for my mother
I am glad to hear that there were no high-risk abnormalities identified on FISH testing. I wish you and your Mother the best. Please keep us informed of her progress.
Best,
Pete V.
Best,
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
21 posts
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