[dogmom]

Re: Dealing with people quoting old survival data

by dogmom on Mon Feb 01, 2016 11:28 am

Thank you, Cubs Fan.

I have found the encouraging statistics outweigh the bad lately where myeloma is concerned. Our myeloma oncologist was at the beginning and still is very optimistic and encouraging to us. He has great hopes for a long-term remission with my husband after stem cell transplant and pushes that myeloma is close to being considered a manageable disease with very long life expectancy.

Good luck to you, your family and your mom.

[NStewart]

Re: Dealing with people quoting old survival data

by NStewart on Mon Feb 01, 2016 1:12 pm

Unfortunately you are running into the experience that many of us have with well meaning people saying really negative things to you about your husband's cancer. First, because it is so rare many people have never heard of it and think you are mispronouncing, or saying, melanoma. Second, if they have heard of it, it usually is because of someone they knew/know who had it many years ago. And, as you know things have changed drastically in the last few years as far as treatment and survival. Third, you are going to get lots of advice from well meaning people about how to treat the cancer with alternative treatments that they swear are effective. Also, diets that definitely cure cancer.

Just smile and thank them for their concern. Then gradually educate those who are close to you and can be of help to you and your husband. Until you are in the situation of living with myeloma you don't really know what it is or what it means.

So, go forward knowing that your husband is getting good care and is responding to his treatment so far.

Nancy in Phila

[Rneb]

Re: Dealing with people quoting old survival data

by Rneb on Mon Feb 01, 2016 7:19 pm

Two thoughts:

Nancy, as usual, is spot on with her observations and suggestions.

Second, myeloma is a cancer of the plasma cells, I you really wish to be precise and definitive.

However, among the various "B cell dyscrasias," multiple myeloma is increasing in diagnosed cases (annually). Earlier and better testing / detection / training is at the root cause, I'd suspect.

[Ted Kan]

Re: Dealing with people quoting old survival data

by Ted Kan on Tue Feb 02, 2016 2:32 am

I do not consider myeloma to be a rare form of cancer. Uncommon, maybe. Not known by most people, yes. Myeloma is much more common than many more well known cancers such as ovarian cancer. For example, the American Cancer Society estimates there were 26,850 new myeloma cases in 2015 versus 21,290 new cases of ovarian cancer.

[SK1]

Re: Dealing with people quoting old survival data

by SK1 on Tue Feb 02, 2016 4:52 pm

Hi dogmom,

My wife (62) has an aggressive form with poor cytogenetics. Statistics are just that, and include data from decades ago. There's been tremendous advancement in the last 10 years and even the last year, so that changes the value of those statistics. There's also not a large database to draw those statistics from, which further reduces their value. We've decided not to focus on that and hope that the treatment plans will continue to improve while she waits for it to become chronic on the way to a cure.