Hi Rhonda.
I hope your stem cell transplant goes well. I have seen charts where women with multiple myeloma do not live as long as men with multiple myeloma and I wonder if it is because women are exposed to so many chemicals through creams and hair colors.
Just thinking out loud.
Cathy
Forums
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
Hello Cathy, In my limited experience as a patient, I met several other women patients who did not survive myeloma, over the last six years. This has been really sad, and also has made me more aware of how dangerous a disease is myeloma. I have also wondered as to whether women are more vulnerable to the cancer, but have no answers. My only guess is that perhaps the women could not withstand the treatments as well as the men have done. (Or, perhaps I met more women who were patients). I would appreciate reading any stats regarding gender and survival of myeloma.
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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: Treatments w/o steroids, refractory to Revlimid, Velcade
Hi Nancy,
You may recall that the issue of gender and survival among myeloma patients was discussed a bit in the comments to this Beacon news article,
https://myelomabeacon.org/news/2013/08/31/multiple-myeloma-survival-race-age/
where we posted a graph of (relative) survival statistics for U.S. male and female myeloma patients.
You may recall that the issue of gender and survival among myeloma patients was discussed a bit in the comments to this Beacon news article,
https://myelomabeacon.org/news/2013/08/31/multiple-myeloma-survival-race-age/
where we posted a graph of (relative) survival statistics for U.S. male and female myeloma patients.
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
Hello Beacon Staff, I see that we did discuss that issue of gender back in 2013! It seemed at that time that in the US, the gender gap was there. Females had a lower rate of survival, but the gap was narrowing over the years. Thanks for posting that link again. Individually, one can't really see trends, but statistics can offer some insight. I get discouraged when I hear of anyone who did not survive myeloma, but trust that improvements in treatment are being gained.
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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: Treatments w/o steroids, refractory to Revlimid, Velcade
The poorer survival statistics for women with multiple myeloma also occur in other European countries, so clearly there is a common underlying issue, which is at odds with the generally longer life expectancy for women.
It could be a number of factors, not just chemical exposure (which I suspect in some may be the trigger for developing the disease). One which may be that men may tolerate the harsh treatments longer than women, or the different hormonal status plays an unknown role in their response to the disease.
Although there are more 10 year survivors and I have met the odd 20 year ones, these are exceptional in the extreme. We are not at the stage of individualised treatments based on GEP assessment of every patient, (the costs of which will be exceptionally high).
We do not know, because there are no agreed approach to the treatment of the disease, whether the specialists we see and the different approaches / philosophies taken to treatment by different clinicians, (I have experienced this in single institutions and been dismayed), too create disparity in outcomes not just between patients but between the genders too. Or maybe we expect too much for an incurable disease where outcomes remain so unpredictable- who knows?
I personally expect less at the moment because of so much uncertainty. My general physician has told me I should learn to be a patient and trust the treating doctors, when I seek tests related to possible side affects from treatment. Unfortunately mylong personal experience with self and family and that of many others has suggested it is not always a good thing not to be more questioning and proactive.
It could be a number of factors, not just chemical exposure (which I suspect in some may be the trigger for developing the disease). One which may be that men may tolerate the harsh treatments longer than women, or the different hormonal status plays an unknown role in their response to the disease.
Although there are more 10 year survivors and I have met the odd 20 year ones, these are exceptional in the extreme. We are not at the stage of individualised treatments based on GEP assessment of every patient, (the costs of which will be exceptionally high).
We do not know, because there are no agreed approach to the treatment of the disease, whether the specialists we see and the different approaches / philosophies taken to treatment by different clinicians, (I have experienced this in single institutions and been dismayed), too create disparity in outcomes not just between patients but between the genders too. Or maybe we expect too much for an incurable disease where outcomes remain so unpredictable- who knows?
I personally expect less at the moment because of so much uncertainty. My general physician has told me I should learn to be a patient and trust the treating doctors, when I seek tests related to possible side affects from treatment. Unfortunately mylong personal experience with self and family and that of many others has suggested it is not always a good thing not to be more questioning and proactive.
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
Hi Nancy.
I will look at the link by the Beacon staff, and I will see if I can find the study I recently saw with differing Overall Survival for women versus men.
Hi Edna. After thinking I was going to die a couple of times in the last 3 years, I definitely have a sense of ownership of my own health. What I sense you reject and I also reject, is almost a childlike faith or obedience in whatever the doctor says. I will always seriously consider what a doctor says, but the truth is that no one cares about our life as much as we do! If they make a mistake, they would feel terrible - but if they make a mistake we might be dead.
Here is a very simple example of thinking for ourselves. When I was first being diagnosed, I needed both a "fat tab biopsy" and a Bone Marrow Transplant. I was scheduled to be put under for the fat tab biopsy and my husband said, "why can't they do the Bone Marrow Biopsy while you are unconscious?" We asked the doctors - who said, "Good idea - we will see if we can set that up." And they did!
Fortunately, my oncologist is wonderful and when I asked if I could refuse a certain drug he said, "yes - you are in the drivers seat." I SO appreciate that.
On a lighter note - here is a link on how to go gray
http://www.dailymail.co.uk/femail/article-3216359/Why-going-grey-fun-friends-Scared-ditch-dye-women-joined-forces.html
Cathy
I will look at the link by the Beacon staff, and I will see if I can find the study I recently saw with differing Overall Survival for women versus men.
Hi Edna. After thinking I was going to die a couple of times in the last 3 years, I definitely have a sense of ownership of my own health. What I sense you reject and I also reject, is almost a childlike faith or obedience in whatever the doctor says. I will always seriously consider what a doctor says, but the truth is that no one cares about our life as much as we do! If they make a mistake, they would feel terrible - but if they make a mistake we might be dead.
Here is a very simple example of thinking for ourselves. When I was first being diagnosed, I needed both a "fat tab biopsy" and a Bone Marrow Transplant. I was scheduled to be put under for the fat tab biopsy and my husband said, "why can't they do the Bone Marrow Biopsy while you are unconscious?" We asked the doctors - who said, "Good idea - we will see if we can set that up." And they did!
Fortunately, my oncologist is wonderful and when I asked if I could refuse a certain drug he said, "yes - you are in the drivers seat." I SO appreciate that.
On a lighter note - here is a link on how to go gray
http://www.dailymail.co.uk/femail/article-3216359/Why-going-grey-fun-friends-Scared-ditch-dye-women-joined-forces.html
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
Hi Antelope
On the lighter note, I stopped worrying about the 'old age' look with hair of white and natural colour after multiple myeloma diagnosis. Really who cares, just my vanity because my face is 'young' without signs of old age but now my hair has moved up to be 'my age'!!
I worked in medical research in a clinical setting so I know how doctors can behave and understand easily clinical issues to challenge. I am considered a difficult patient- but again it is my life as you note. I would take legal action too if the evidence warranted it.
But we also depend on medicine and those who treat us. Some clinicians are more amenable to discussion and you feel in control, others are not or play by 'rules' of a not very helpful system, to a degree that inappropriate decisions may be made more possible for individual patients.
I have had changing myeloma specialists since I began treatment. Some more experienced / knowledgeable than others and able to consider things I expect and answer my questions better.
I attend a specialist myeloma clinic and have had thoughtful care, I did meet a patient- now an 11 year survivor -who informed me she got close to death three times during her time with multiple myeloma, but she is still here and I think it is because of the expertise. So I know if there is any chance of a decent length of survival, (I am not expecting 10 years), I think am in the right place for treatment and care. But sometimes even then decisions need to be questioned; most I have had no issues with as they are in accord with my thinking/ knowledge.
Keep well and make the best of your life.
Edna
On the lighter note, I stopped worrying about the 'old age' look with hair of white and natural colour after multiple myeloma diagnosis. Really who cares, just my vanity because my face is 'young' without signs of old age but now my hair has moved up to be 'my age'!!
I worked in medical research in a clinical setting so I know how doctors can behave and understand easily clinical issues to challenge. I am considered a difficult patient- but again it is my life as you note. I would take legal action too if the evidence warranted it.
But we also depend on medicine and those who treat us. Some clinicians are more amenable to discussion and you feel in control, others are not or play by 'rules' of a not very helpful system, to a degree that inappropriate decisions may be made more possible for individual patients.
I have had changing myeloma specialists since I began treatment. Some more experienced / knowledgeable than others and able to consider things I expect and answer my questions better.
I attend a specialist myeloma clinic and have had thoughtful care, I did meet a patient- now an 11 year survivor -who informed me she got close to death three times during her time with multiple myeloma, but she is still here and I think it is because of the expertise. So I know if there is any chance of a decent length of survival, (I am not expecting 10 years), I think am in the right place for treatment and care. But sometimes even then decisions need to be questioned; most I have had no issues with as they are in accord with my thinking/ knowledge.
Keep well and make the best of your life.
Edna
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