Hi,
My mum was diagnosed with multiple myeloma around June 2011. First treatment that she received was dexamethasone, and thalidomide. For several months having the treatment, her cancer cells showed some improvement and at one point, the doctor said the cancer cells is very low and barely there. But 2 months after continuing the same treatment, her cancer cells increased.
Now, the doctor gave my mom Velcade and dexamethasone. After 3 cycles, it seems like the drugs doesn't give any effect, no response to it and her cancer plasma cells now has increased to 72%. Besides from that, she has been having a very bad side effects from the drugs too.
She recently just got out from the hospital because she was very weak, as her blood count was very low and received blood transfusion. During her stay at the hospital, the doctor called the family member to announce that we all should be prepared, because based from his past experience with multiple myeloma patients, if the patient is not responding to the drugs, they only have about 3-4 months left to live. Currently, they are discussing whether to stop or continue the same drugs, or try new drugs. Before this, they also mention about doing a transplant but I am not sure why they did not proceed to do it.
Right now I am very worry about my mother's condition because I am residing in another country, 13 hours away from home. I would like to know whether is it true that she only have about 3-4 months to live based on her current health condition and is there any other treatment for her?
Forums
Re: Patient not responding to Velcade
Hi Lyna, I am very sorry to hear about your mother's myeloma diagnosis. wHAT country does she live in? Would she have access to other myeloma drugs such as lenalidomide (Revlimid)? You could ask your doctors about what other treatments are available too. It is possible that they are not proceeding with a stem cell transplant because it is difficult to harvest her stem cells at this time. I am not a doctor, but I have also read about cyclophosphamide being used for treatment.
Good luck on everything. Maybe others on this forum would have experience with the country that your mother lives in, if you could share that information.
Good luck on everything. Maybe others on this forum would have experience with the country that your mother lives in, if you could share that information.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Patient not responding to Velcade
Hi Nancy,
Thank you so much for your reply. My mum is residing in Malaysia. It is very hard to reach the doctor as they don't give out their number as a matter of privacy. One of the doctor did gave me his email, but until today, no reply from them which made me very frustrated about.
I need to get the answer from a doctor as a confirmation so that I can decide whether to leave my career and go home to take care of my mother or stay and continue to give financial support to her. However, I will make sure to mention on the drugs that you have suggested once I can get hold of the doctor.
Thank you so much for your reply. My mum is residing in Malaysia. It is very hard to reach the doctor as they don't give out their number as a matter of privacy. One of the doctor did gave me his email, but until today, no reply from them which made me very frustrated about.
I need to get the answer from a doctor as a confirmation so that I can decide whether to leave my career and go home to take care of my mother or stay and continue to give financial support to her. However, I will make sure to mention on the drugs that you have suggested once I can get hold of the doctor.
Re: Patient not responding to Velcade
Hi Lyna, I can see that this is a very difficult decision for you to make and I hope that things improve for your mother. Maybe there are other treatments to try and the doctors are trying to get a treatment program organized! Hope that you hear from the doctors soon.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Patient not responding to Velcade
Sorry to hear about your mother's situation, Lyna.
There was a discussion here in the forum a while back where we ended up listing a wide range of treatment options for myeloma patients. Here's a link to the discussion; you may find it useful:
https://myelomabeacon.org/forum/what-are-the-likely-scenarios-after-bone-marrow-failure-t1540.html
As Nancy suggested, adding cyclophosphamide to the Velcade and dexamethasone your mother already receiving would be one option. VCD, sometimes called "CyBorD," is a relatively common treatment regimen for newly diagnosed myeloma patients.
However, the complicating factor is your mother's blood counts, which indicate that she probably needs at least some break from treatment. This is probably the main reason why your mother's doctors are concerned -- they want to treat her, given her apparently aggressive disease, but their hands are somewhat tied due to her blood counts.
The key thing, however, is that there are other treatment options for your mother if her doctors decide she needs to be switched to something else, and assuming her blood counts can recover a bit.
(And, yes, Nancy is absolutely correct that Revlimid (lenalidomide) is also an option. It could be given alone or in combination with dexamethasone, potentially with Biaxin (clarithromycin) as well.)
There was a discussion here in the forum a while back where we ended up listing a wide range of treatment options for myeloma patients. Here's a link to the discussion; you may find it useful:
https://myelomabeacon.org/forum/what-are-the-likely-scenarios-after-bone-marrow-failure-t1540.html
As Nancy suggested, adding cyclophosphamide to the Velcade and dexamethasone your mother already receiving would be one option. VCD, sometimes called "CyBorD," is a relatively common treatment regimen for newly diagnosed myeloma patients.
However, the complicating factor is your mother's blood counts, which indicate that she probably needs at least some break from treatment. This is probably the main reason why your mother's doctors are concerned -- they want to treat her, given her apparently aggressive disease, but their hands are somewhat tied due to her blood counts.
The key thing, however, is that there are other treatment options for your mother if her doctors decide she needs to be switched to something else, and assuming her blood counts can recover a bit.
(And, yes, Nancy is absolutely correct that Revlimid (lenalidomide) is also an option. It could be given alone or in combination with dexamethasone, potentially with Biaxin (clarithromycin) as well.)
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Patient not responding to Velcade
Hello Lyna,
It sounds as though your mother has only received two types of treatment for her myeloma.
One thing I usually do is try to maximize the doses given for each drug. In addition the oncologist could consider adding cyclophosphamide to the Velcade. This is a very successful treatment (CyBorD). There are a number of other treatments that could be considered including bendamustine, oral mephalan, pegylated doxorubicin [Doxil] and lenalidomide [Revlimid]. Of course carfilzomib [Kyprolis] and pomalidomide [Pomalyst] are the newest treatment options if they are available in Malaysia.
It is impossible for me to say if her outcome can be predicted to be so short. Something you might do is to try to arrange a telephone appointment with her oncologist to get answers to your questions. I think it may be time for you to visit her as well so that you feel fully informed.
I wish your mother and your family all the best in fighting this disease.
It sounds as though your mother has only received two types of treatment for her myeloma.
One thing I usually do is try to maximize the doses given for each drug. In addition the oncologist could consider adding cyclophosphamide to the Velcade. This is a very successful treatment (CyBorD). There are a number of other treatments that could be considered including bendamustine, oral mephalan, pegylated doxorubicin [Doxil] and lenalidomide [Revlimid]. Of course carfilzomib [Kyprolis] and pomalidomide [Pomalyst] are the newest treatment options if they are available in Malaysia.
It is impossible for me to say if her outcome can be predicted to be so short. Something you might do is to try to arrange a telephone appointment with her oncologist to get answers to your questions. I think it may be time for you to visit her as well so that you feel fully informed.
I wish your mother and your family all the best in fighting this disease.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Patient not responding to Velcade
Hi Boris, Dr. Libby,
Thank you very much for all the reply and well wishes.
I have received some feedback from the doctors treating my mum from my brother just recently. Currently they are adding cyclophosphamide to the Velcade, just as both of you adviced and will continue with the treatment for another 2 cycles before starting on Revlimid.
Hopefully, the treatment will be a success for my mother.
Your informations regarding the myeloma treatment has given me hope and provided me with more knowledge about my mother's treatment options. I feel more confident and positive in helping my mum fighting this disease. Thank you again.
Thank you very much for all the reply and well wishes.
I have received some feedback from the doctors treating my mum from my brother just recently. Currently they are adding cyclophosphamide to the Velcade, just as both of you adviced and will continue with the treatment for another 2 cycles before starting on Revlimid.
Hopefully, the treatment will be a success for my mother.
Your informations regarding the myeloma treatment has given me hope and provided me with more knowledge about my mother's treatment options. I feel more confident and positive in helping my mum fighting this disease. Thank you again.
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Aflyna
Re: Patient not responding to Velcade
My mum passed away on the 18th January 2014.
Her health deteriorated very fast. Two weeks before she went away, she kept on saying that she felt pain all over her body and she can't describe it. So we took her to the hospital and the doctor warded her. The next day, the doctor gave her morphine and from there her health went down very badly. The day after that my mum breathing changed, her breathing was very loud, her body started shaking very badly that she can't even hold a small plastic cup. The doctor kept on giving her Morphine and drip.
Next day, they came back and said my mum had a very bad lung infection and only have few days left and even explained how she is going to die to us. From there, the doctor just gave her a Hydrocort drug for her breathing and increased the morphine dose to every 4 hours. Three days after that, they just stopped the Hydrocort and increased the Morphine dose to 24 hours.
No food or drinks allowed for my mum for nearly 2 weeks and 3 days before she passed away, she started vomiting black/blood like liquid non-stop and we had to change her almost all the time. But the doctor didn't do anything about it. Inside her mouth seemed like decaying as well after few days of no food and drinks. Everytime she vomits, tears streaming out from her eyes. It was a very devastating moment for us. Her last breath was after she vomited the last black bits and her heart just stopped beating and I was cleaning her at that time.
I don't know why I'm writing this but I just felt that whatever treatment that the doctor gave to my mum at that time was wrong and I just don't know how to justify it. Maybe I am wrong, maybe this is just an emotional/raging feeling after loosing the person I love the most.
Her health deteriorated very fast. Two weeks before she went away, she kept on saying that she felt pain all over her body and she can't describe it. So we took her to the hospital and the doctor warded her. The next day, the doctor gave her morphine and from there her health went down very badly. The day after that my mum breathing changed, her breathing was very loud, her body started shaking very badly that she can't even hold a small plastic cup. The doctor kept on giving her Morphine and drip.
Next day, they came back and said my mum had a very bad lung infection and only have few days left and even explained how she is going to die to us. From there, the doctor just gave her a Hydrocort drug for her breathing and increased the morphine dose to every 4 hours. Three days after that, they just stopped the Hydrocort and increased the Morphine dose to 24 hours.
No food or drinks allowed for my mum for nearly 2 weeks and 3 days before she passed away, she started vomiting black/blood like liquid non-stop and we had to change her almost all the time. But the doctor didn't do anything about it. Inside her mouth seemed like decaying as well after few days of no food and drinks. Everytime she vomits, tears streaming out from her eyes. It was a very devastating moment for us. Her last breath was after she vomited the last black bits and her heart just stopped beating and I was cleaning her at that time.
I don't know why I'm writing this but I just felt that whatever treatment that the doctor gave to my mum at that time was wrong and I just don't know how to justify it. Maybe I am wrong, maybe this is just an emotional/raging feeling after loosing the person I love the most.
Re: Patient not responding to Velcade
Hi Lyna,
I am touched and very saddened to hear the news about your mom. She was very lucky to have you by her side. I am so sorry for your loss and the circumstances that your mom went through. I hope you can take some comfort in the fact that you were there for her.
I am touched and very saddened to hear the news about your mom. She was very lucky to have you by her side. I am so sorry for your loss and the circumstances that your mom went through. I hope you can take some comfort in the fact that you were there for her.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Patient not responding to Velcade
So sorry your mother had such a difficult passing. I can't imagine how difficult, painful and frustrating this is for you and your family. This is a terrible disease and I know this doesn't help much but she is at peace now.
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Kelleyemery
15 posts
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