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Anyone take new drug Camzyos (mavacamten) for HCM?
Since FDA approval in April has anyone (non-clinical trial patient) actually obtained a prescription and had it filled? If so, when and where was the cardiologist located? Is the registration process for doctor/patient/Rx taking a long time for this much anticipated drug?
Thanks from a fellow patient!
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@walkinggirl
I have HCM and I have the gene but it stops there. It can not be passed on to my grandchildren.
@walkinggirl yes, I am aware and find it all very interesting
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2 Reactions@jimhealthy Please read what I wrote to @rebaheizer. In my opinion, your HCM gene is probably among the undiscovered (I read somewhere that perhaps half have been found). What about the PARENTS of your nonsystematic grandsons? If the gene was not found in you (so far), it would not be found in your child unless your wife has it- a different one than yours. Yet, if your grandsons' HCM gene has been identified, the marry-into-the-family spouse may be the one who passed it on to your grandsons. Hope this makes sense!
@rebaheizer The particular gene that causes your HCM probably has not been found as of now. When looking for my mutated gene, 123 of the known HCM-causing genes (in 2022) were tested and all were OK. I was told to contact them in 5 years at which time more will probably have been discovered. We would check my DNA for these new findings.
@rebaheizer — or my mistress.
@jimhealthy maybe your spouse carries the gene.
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1 Reaction@peggykmitchell — I have HCM but I don’t have any of the genes. I have been gene-tested three separate times.
On the other hand, my two grandsons have been tested and found to have the genes. Both are non-symptomatic so far.
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1 Reaction@peggykmitchell you may or may not carry the gene related to HCM. I have a gene mutation but not the pathogenic gene associated with Hcm but still have Hcm. The gene test determines who else maybe needs screening like parents, siblings or children.
One tool in the box.
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1 ReactionThank you for the information. I have done some genealogy in the past and
recall both of my mother's maternal grandparents dying fairly young. I then
realized that one of their sons had three sons, all of whom died young,
with two of them definitely having heart issues, although I am not sure
what happened with the oldest son. Then, I found other cousins descended
from those grandparents who had died in their 40s, although one died of
cancer. So, I am thinking there may be a familial gene mutation, but I need
more information to determine that. I like to KNOW about things and so I
like to solve family "mysteries". Thanks, again.
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1 Reaction@jess51 @memphis901 @peggykmitchell, gene mutations and family genetics can sometimes be used interchangeably, but they are distinct.
Hypertrophic cardiomyopathy (HCM) usually is caused by changes in genes that cause the heart muscle to thicken. It is often inherited, called familial HCM. People with one parent with hypertrophic cardiomyopathy have a 50% chance of having the gene change that causes the disease. Not all genetic mutations causing HCM are familial. However, genetic testing or genetic counseling may be recommended if you have a family history of the condition.
Further reading from
- Mayo Clinic https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
- Is Hypertrophic Cardiomyopathy Always a Familial and Inherited Disease? https://www.ahajournals.org/doi/10.1161/JAHA.122.028974
In this Q&A with Mayo Clinic's expert, Steven J. Lester, M.D., talks about hypertrophic cardiomyopathy (HCM) and genes.
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