Thank you for the update, Manuel.
Don't worry right now about the statistics your doctor shared with you. Personally, I think it is a good sign that the doctor is being honest with you about your mother's prognosis, but you also have to realize that each myeloma patient is a very unique case. The statistics can give you a sense of what your mother's outlook may be, and that's helpful, but focus now on getting the best treatment for her possible.
If you haven't already used it, go to ClinicalTrials.Gov and do some searches to see if there are any clinical trials that might be relevant for your mother.
I did find one trial testing Velcade maintenance therapy in Europe. Here's the link:
http://clinicaltrials.gov/ct2/show/study/NCT00311337
However, the trial may no longer be going on. Also, the nearest center to you would be in northern Italy, in Bolzano. So the trial may not be an option.
Remember, as well, with new drugs like Pomalyst and Kyprolis becoming available in Europe in the next few years, there will be more treatment options for your mother if she in fact relapses after this treatment. Treanda (bendamustine) also is an option that already exists.
Good luck,
Ricardo
Forums
Re: Revlimid-dexamethasone no longer working
As advised by the doctors, we decided to begin a pad cycle,
but there is a problem that worries me:
the Doxorubicin that is probably going to be used is the traditional one, not the liposomal one. Thursday they're going to give me a confirmation of the availability of Myocet (Liposomal Doxorubicin). I offered to pay for the drug but it's not possible in a public hospital in Italy, and I don't have the possibility to pay for the whole treatment in a private structure.
Friday we should start the cycle, but I don't want to run unnecessary risks, though I am aware that the Doxorubicin problem is given by the cumulative dose, and my mother should only undergo three cycles, but if we are unable to collect enough stem cells, the number of cycles would increase, and so would the heart complication possibilities.
I also read that there are other side effects, such as Neutropenia, vomit, etc, in smaller percentages.
Do you think it's important for her to receive the liposomal Doxorubicin?
Do I need to consider taking my mother to another centre?
We have a great relationship with this current structure, but after 20 days in the hospital for intestinal complications, I don't want any further problems for my mum if they are not strictly necessary, and I could avoid at least part of them.
If I decide to take my mum to another centre, we would probably need to delay the start date for the therapy by 1 or 2 weeks and I wouldn't want this to have a negative impact on the current status of her illness.
but there is a problem that worries me:
the Doxorubicin that is probably going to be used is the traditional one, not the liposomal one. Thursday they're going to give me a confirmation of the availability of Myocet (Liposomal Doxorubicin). I offered to pay for the drug but it's not possible in a public hospital in Italy, and I don't have the possibility to pay for the whole treatment in a private structure.
Friday we should start the cycle, but I don't want to run unnecessary risks, though I am aware that the Doxorubicin problem is given by the cumulative dose, and my mother should only undergo three cycles, but if we are unable to collect enough stem cells, the number of cycles would increase, and so would the heart complication possibilities.
I also read that there are other side effects, such as Neutropenia, vomit, etc, in smaller percentages.
Do you think it's important for her to receive the liposomal Doxorubicin?
Do I need to consider taking my mother to another centre?
We have a great relationship with this current structure, but after 20 days in the hospital for intestinal complications, I don't want any further problems for my mum if they are not strictly necessary, and I could avoid at least part of them.
If I decide to take my mum to another centre, we would probably need to delay the start date for the therapy by 1 or 2 weeks and I wouldn't want this to have a negative impact on the current status of her illness.
Re: Revlimid-dexamethasone no longer working
Because of trace of blood in the excrement the hematologist prescribe another colonscopy
in the middletime a few day later my mother have a Urinary tract infection, we pass the easter night in the first aid and the doctor send my mother home prescribing her an antibiotic
the hemoglobin is another time low 8.8
still we have no luck......
please can you answer my question about the doxorubicine?
i find one hospital that can somministrate the liposomal doxorubicine is only few miles distant
from where my mother receive her cure now
but my mother seems don't want to change i have to convince her?
thank you
in the middletime a few day later my mother have a Urinary tract infection, we pass the easter night in the first aid and the doctor send my mother home prescribing her an antibiotic
the hemoglobin is another time low 8.8
still we have no luck......
please can you answer my question about the doxorubicine?
i find one hospital that can somministrate the liposomal doxorubicine is only few miles distant
from where my mother receive her cure now
but my mother seems don't want to change i have to convince her?
thank you
Re: Revlimid-dexamethasone no longer working
I know is not right to open new post for a question I already ask but I wouldd have a response,there are many people suffering for their parents i'm not the only one and neither the one who deserve a response but if someone of you can help me i appreciate it,if you can't i understand and I thank you anyway for the support that you have given me till now.
Dr.Peter Voorhes advice me of the CyBorD and RVD regimen but no one of the physician with
i talk seems to consider this regimens.
QUESTION:Is important to my mother to receive pegylated liposomal doxorubicin in
the PAD indcuction regimen before ASCT?
i find one hospital few miles from the one where my mother receive their care now
who can somministrate this type of drug
the best for my mother is to stay with the pysician and nurse who knows and with have a good
relationship but have traditional doxorubicin or start from zero to receive the best care?
i'm for the second option only i don't no if is the right things and if i have to push my mother in this direction.......
the full story is above
tomorrow colonscopy and the day after take my mother to the pysician who can somministrate the liposomal doxorubicin at least i want she know him before make her decision
Dr.Peter Voorhes advice me of the CyBorD and RVD regimen but no one of the physician with
i talk seems to consider this regimens.
QUESTION:Is important to my mother to receive pegylated liposomal doxorubicin in
the PAD indcuction regimen before ASCT?
i find one hospital few miles from the one where my mother receive their care now
who can somministrate this type of drug
the best for my mother is to stay with the pysician and nurse who knows and with have a good
relationship but have traditional doxorubicin or start from zero to receive the best care?
i'm for the second option only i don't no if is the right things and if i have to push my mother in this direction.......
the full story is above
tomorrow colonscopy and the day after take my mother to the pysician who can somministrate the liposomal doxorubicin at least i want she know him before make her decision
Re: Revlimid-dexamethasone no longer working
Dear manuel,
I do not think that you should worry about traditional doxorubivin vs. pegylated. Both have been used in combination with Velcade and dexamethasone. Both regimens are effective. The traditional doxorubicin is typically administered over a 4-day period as a continuous infusion. It is felt to be less harmful to the heart when administered that way (as opposed to over ~1 hour). Plus, as you point out, if she only is on therapy for a few cycles, her cumulative dose of doxorubicin will not wind up being that high. Traditional doxorubicin is more likely to affect her blood counts and cause loss of hair. But, it is less likely to cause hand and foot pain from hand-foot syndrome. I think either choice is highly reasonable, but you should discuss your concerns with your mother's doctors. They are in a better position to comment, having been involved in your mother's care and knowing all of the details. I would not delay the start of treatment solely for the pegylated doxorubicin. As I mentioned before, under your specific circumstances, I think CyBorD and PAD are good choices (CyBorD the best if available). If your mother is really sick and cannot tolerate a 3-drug regimen (at least initially), Velcade and dexamethasone by themselves would also be an option.
Let us know how it goes.
Good luck and hang in there!
Pete V.
I do not think that you should worry about traditional doxorubivin vs. pegylated. Both have been used in combination with Velcade and dexamethasone. Both regimens are effective. The traditional doxorubicin is typically administered over a 4-day period as a continuous infusion. It is felt to be less harmful to the heart when administered that way (as opposed to over ~1 hour). Plus, as you point out, if she only is on therapy for a few cycles, her cumulative dose of doxorubicin will not wind up being that high. Traditional doxorubicin is more likely to affect her blood counts and cause loss of hair. But, it is less likely to cause hand and foot pain from hand-foot syndrome. I think either choice is highly reasonable, but you should discuss your concerns with your mother's doctors. They are in a better position to comment, having been involved in your mother's care and knowing all of the details. I would not delay the start of treatment solely for the pegylated doxorubicin. As I mentioned before, under your specific circumstances, I think CyBorD and PAD are good choices (CyBorD the best if available). If your mother is really sick and cannot tolerate a 3-drug regimen (at least initially), Velcade and dexamethasone by themselves would also be an option.
Let us know how it goes.
Good luck and hang in there!
Pete V.
-
Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Revlimid-dexamethasone no longer working
Thanks,Dr.Peter Voorhes
SELF QUOTE:tomorrow colonscopy and the day after take my mother to the pysician who can somministrate the liposomal doxorubicin at least i want she know him before make her decision.
Fortunally the colonscopy is negative.
The physician of the hospital (not the one where my mother receive their care now)
who can handle PLD says they can give her this drug but because
of his price,first start with Velcade dexametasone,and if the response is not good they add later,
but like you said they tell me to my mother is not very importantat to have liposomial one
and my mother decison is to not move over from her current hospital
END of self QUOTE
i ask for the 4-day period as a continuous infusion,but they say to me is not possible in this way
they somministrate in an hour continuos infusion 30gmMq day 8,
i discuss with my mother doctor but even if i'll pay myself the liposomial doxorubicine
is not possible to have it.
i too prefer CYbord but no one i contact is willing to use this regimen
they prescribe high dose dexametasone 320 MG that's scary me a bit
because at the first time they say me the low dose is best for the elderly patient who in add
have intestinal complication with resize surgery
now they change his mind
SELF QUOTE:tomorrow colonscopy and the day after take my mother to the pysician who can somministrate the liposomal doxorubicin at least i want she know him before make her decision.
Fortunally the colonscopy is negative.
The physician of the hospital (not the one where my mother receive their care now)
who can handle PLD says they can give her this drug but because
of his price,first start with Velcade dexametasone,and if the response is not good they add later,
but like you said they tell me to my mother is not very importantat to have liposomial one
and my mother decison is to not move over from her current hospital
END of self QUOTE
i ask for the 4-day period as a continuous infusion,but they say to me is not possible in this way
they somministrate in an hour continuos infusion 30gmMq day 8,
i discuss with my mother doctor but even if i'll pay myself the liposomial doxorubicine
is not possible to have it.
i too prefer CYbord but no one i contact is willing to use this regimen
they prescribe high dose dexametasone 320 MG that's scary me a bit
because at the first time they say me the low dose is best for the elderly patient who in add
have intestinal complication with resize surgery
now they change his mind
Re: Revlimid-dexamethasone no longer working
my mother complete the first cycle of PAD with standard doxorubicine,
untill now is well tollerated without evident side effects,execpt a moderate alopecia.
From the second cycle of therapy she can have liposomial doxorubicine
i'm very pleased with this news,beside the control of the disease is the primary objective
At the first control her Mspike drop down is about 10g/l after two infusion of Velcade and before her first somministration of doxorubicine
the nexth time we go to the hospital we have all the result hoping for a good outcome
thank you for reading this
untill now is well tollerated without evident side effects,execpt a moderate alopecia.
From the second cycle of therapy she can have liposomial doxorubicine
i'm very pleased with this news,beside the control of the disease is the primary objective
At the first control her Mspike drop down is about 10g/l after two infusion of Velcade and before her first somministration of doxorubicine
the nexth time we go to the hospital we have all the result hoping for a good outcome
thank you for reading this
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