Simcha – Thank you for the kind words and positive vibes.
Daisy – Your idea is FANTASTIC. I have been stressing about telling the doctor in front of dad about his mental state lately, worried about embarrassing / angering him. This is a great idea. Now I just have to figure out how to slip the note to his nurse without getting caught, but I think I can pull it off.
Thanks again!
Forums
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chris0830 - Name: Chris B
- Who do you know with myeloma?: Father
- When were you/they diagnosed?: Jan 2013
- Age at diagnosis: 67
Re: Parents upset by father's relapse - how can I help?
I've read some sincere advice from compassionate people who have posted replies to your situation. The three scariest words in the English language are "you have cancer". Those words are even more terrifying when you learn that the type of cancer you have isn't considered to be curable. I can state this with authority because I, like your dad, am living with multiple myeloma.
The first piece of advice I would offer is to echo what another person has stated. Your Dad's pastor, church, and Christian brothers and sisters can be a wonderful source of comfort during times like this. It is my experience that the emotional and mental stress associated with this cancer are far worse than the physical issue. Exploring this avenue of mental and emotional support can be of tremendous value during this period.
Secondly, patience and support on the part of the caregivers (your mother and you) are paramount. In some ways, your Dad's mental state is in a worse place than when he was first diagnosed. It is completely understandable that he feels like he does. It takes time to process and come to grips with this new reality. My best guess is that the benefits of the autologous transplant process your father underwent were greatly oversold and that fact has now become obvious.
It has been known for some time that this type of cancer (perhaps most cancers) come about when the stem cells become damaged and can no longer produce disease-free components. So the process of saving one's own stem cells, killing the bone marrow, and then returning the collected stem cells to the patient accomplishes very little in the long run.
The one statistic that oncologists tout is the "remission" or disease-free state that immediately follows the transplant process. The reality is that this means nothing, as less than 1% of transplants produce a true cure for multiple myeloma, and the patients have suffered through a very dangerous process and time.
This reality led me to reject the transplant process as a treatment. When I asked three different renowned oncology programs to provide proof that I was wrong, they could not. In fact, they admitted that they could not disagree with my analysis. Truth is that current treatments such as RVD (which I took) were just as effective without the suffering and danger, and that multiple myeloma remains a non-curable form of cancer.
This is what your dad and family are dealing with now. Call it a failure of confidence, for lack of a better term. It will take time, love, patience, and persistence to get to a better place.
Knowledge is power! I encourage all of you to become aggressive and take control of your treatment by being an active partner in that treatment. There are many new treatments available and other promising ones on the horizon. Both Revlimid and Velcade have new and improved versions that have been proven to work even when their predecessors no longer do. Scour the Internet and sign up for updates online when they're available. This will allow you to know about things in early testing that you wouldn't otherwise know about. The real power of this approach is that it brings HOPE, and that's extremely important. It can make you feel like you have some control over the future instead of seeing only hopelessness, fear, and dread.
Do everything and anything you can because the real key here is to remain alive until there is a cure for this thing. I believe that the ultimate cure may have already been found, but it's only available to those where everything else has failed. It involves taking one's own antibodies, training them to defeat your multiple myeloma, and then returning them to your body. I read an article where this was done in one individual and he reached remission and became cancer free. Of course, the cost at this stage of things is off the charts, making it unaffordable even if one could get FDA approval.
I don't know if any of this helps. The key is that there is HOPE! But one has to not give up, focus on quality of life, and stay alive until an affordable cure becomes available.
My heart and thoughts go out to you and your family even as I fight the same disease that your father has! May God bless and keep you all!
John Benton
The first piece of advice I would offer is to echo what another person has stated. Your Dad's pastor, church, and Christian brothers and sisters can be a wonderful source of comfort during times like this. It is my experience that the emotional and mental stress associated with this cancer are far worse than the physical issue. Exploring this avenue of mental and emotional support can be of tremendous value during this period.
Secondly, patience and support on the part of the caregivers (your mother and you) are paramount. In some ways, your Dad's mental state is in a worse place than when he was first diagnosed. It is completely understandable that he feels like he does. It takes time to process and come to grips with this new reality. My best guess is that the benefits of the autologous transplant process your father underwent were greatly oversold and that fact has now become obvious.
It has been known for some time that this type of cancer (perhaps most cancers) come about when the stem cells become damaged and can no longer produce disease-free components. So the process of saving one's own stem cells, killing the bone marrow, and then returning the collected stem cells to the patient accomplishes very little in the long run.
The one statistic that oncologists tout is the "remission" or disease-free state that immediately follows the transplant process. The reality is that this means nothing, as less than 1% of transplants produce a true cure for multiple myeloma, and the patients have suffered through a very dangerous process and time.
This reality led me to reject the transplant process as a treatment. When I asked three different renowned oncology programs to provide proof that I was wrong, they could not. In fact, they admitted that they could not disagree with my analysis. Truth is that current treatments such as RVD (which I took) were just as effective without the suffering and danger, and that multiple myeloma remains a non-curable form of cancer.
This is what your dad and family are dealing with now. Call it a failure of confidence, for lack of a better term. It will take time, love, patience, and persistence to get to a better place.
Knowledge is power! I encourage all of you to become aggressive and take control of your treatment by being an active partner in that treatment. There are many new treatments available and other promising ones on the horizon. Both Revlimid and Velcade have new and improved versions that have been proven to work even when their predecessors no longer do. Scour the Internet and sign up for updates online when they're available. This will allow you to know about things in early testing that you wouldn't otherwise know about. The real power of this approach is that it brings HOPE, and that's extremely important. It can make you feel like you have some control over the future instead of seeing only hopelessness, fear, and dread.
Do everything and anything you can because the real key here is to remain alive until there is a cure for this thing. I believe that the ultimate cure may have already been found, but it's only available to those where everything else has failed. It involves taking one's own antibodies, training them to defeat your multiple myeloma, and then returning them to your body. I read an article where this was done in one individual and he reached remission and became cancer free. Of course, the cost at this stage of things is off the charts, making it unaffordable even if one could get FDA approval.
I don't know if any of this helps. The key is that there is HOPE! But one has to not give up, focus on quality of life, and stay alive until an affordable cure becomes available.
My heart and thoughts go out to you and your family even as I fight the same disease that your father has! May God bless and keep you all!
John Benton
Re: Parents upset by father's relapse - how can I help?
Hello John Benton, and thank you! Your post was indeed helpful!
Yesterday we had our visit with the specialist and I feel it went very well. He was very reassuring and talked to dad about the newer versions of Revlimid and Velcade for therapy, and how many different combos could be tried out of different agents. The doctor also reassured my dad that he really hasn't had a lot of therapy yet, so there were MANY options he could try down the road.
I had alerted his nurse prior to the specialist visit of dad's anxiety level and I'm glad that I did, because he was in a much better place leaving the visit yesterday. The doctor had an optimistic disposition, and I think it did my dad a great deal of good to hear him say "OK, so let's get you fixed up!" (with a smile)
Dad and mom do not research or keep up on any myeloma-related news because they know I'm the one constantly researching and asking the pertinent questions to the doctors about treatment, dosages, etc. I wish they would get involved with learning more about multiple myeloma, but dad has told me more than once he just would rather not know the facts. My brother who lives out of state is the same way, his head is in the sand in denial.
I will continue to keep up with the latest information coming out and continue to be present and vocal at dad's appointments.
I'm all for HOPE too! I wish you well too John, and God Bless!
Christa in CT
Yesterday we had our visit with the specialist and I feel it went very well. He was very reassuring and talked to dad about the newer versions of Revlimid and Velcade for therapy, and how many different combos could be tried out of different agents. The doctor also reassured my dad that he really hasn't had a lot of therapy yet, so there were MANY options he could try down the road.
I had alerted his nurse prior to the specialist visit of dad's anxiety level and I'm glad that I did, because he was in a much better place leaving the visit yesterday. The doctor had an optimistic disposition, and I think it did my dad a great deal of good to hear him say "OK, so let's get you fixed up!" (with a smile)
Dad and mom do not research or keep up on any myeloma-related news because they know I'm the one constantly researching and asking the pertinent questions to the doctors about treatment, dosages, etc. I wish they would get involved with learning more about multiple myeloma, but dad has told me more than once he just would rather not know the facts. My brother who lives out of state is the same way, his head is in the sand in denial.
I will continue to keep up with the latest information coming out and continue to be present and vocal at dad's appointments.
I'm all for HOPE too! I wish you well too John, and God Bless!
Christa in CT
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chris0830 - Name: Chris B
- Who do you know with myeloma?: Father
- When were you/they diagnosed?: Jan 2013
- Age at diagnosis: 67
13 posts
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