[Mark]

Re: Long remissions: how common are they?

by Mark on Sun Jul 13, 2014 10:27 am

Hi Multibilly,

Like me, you have heard of no one in your circle of family, friends, etc. that has been in REMISSION for 10 plus years without a transplant. The original poster used the word REMISSION in the title of the thread and 5 times in the body of her post. The word "survivor" was never used.

I have an ex-neighbor whose wife was diagnosed with myeloma about 3.5 years before me, so I know it is possible for people to know multiple patients in their circle of family and friends. His wife has been in a drug-free remission for 6 years since her auto with no maintenance. That is a little more likely that my ex-neighbor would know 2 patients that have had 3 and 6 year drug free remissions because both of the patients he knows had access to novel agents and both of us did transplants. Those are therapies that peer reviewed papers show can potentially provide long term REMISSIONS. The peer reviewed papers I showed above clearly show that inductions that do not include novel agents and with no transplant are highly unlikely to provide 10-15 year REMISSIONS.

I am surprised that the sharper posters here on the Beacon did not mention that they were suspicious when they read this sentence:

"These people look at me as if I'm crazy when I look so depressed and talk about the scary outlook of myeloma."

Multiple posters in this thread and in other threads have mentioned getting their affairs in order after diagnosis and being worried about relapse and just generally being realistic about their diagnosis, etc, In all of my life, prior to diagnosis until today, I have not met one person that does not view blood cancer in general or myeloma specifically as a serious medical condition. Any disease that has patients using drugs with the side effects of proteasome inhibitors, IMIDs, dex and alkylators has to be a serious conditions IMO.

The OP has managed to find 2 people who have had family members / friends diagnosed with myeloma when the median overall survival was thought to be 2-3 years, and who got 10-15 years REMISSIONS without transplant AND they "look at me as if I'm crazy" to be worried that her mother has blood cancer/myeloma.

I honestly think some of my family members worry about the disease more than I do. Maybe I am in the minority. After diagnosis, has anyone who you told that you had blood cancer/myeloma asked you why you would be worried since you were "only" diagnosed with myeloma/blood cancer? I am really curious if that happens to people after they tell people about their diagnosis, since I thought pretty much everybody thought blood cancer was a serious medical condition.

I recently saw an interview with a 20-year myeloma survivor, Jack Aiello. Despite the fact that he has been in REMISSION more than 18 years since his allo, I did not get the impression that he looks at patients like they are "crazy" to be worried about getting a myeloma diagnosis.

By the way, does anyone know any family/friends/neighbors who have been in REMISSION from myeloma 10 plus years without a transplant? If so, you should really encourage them to make their story known. I find stories about long-term transplant survivors like Jack Aiello, James Bond, and Kathy Pederson very inspirational. I am sure patients that go the non-transplant route would love to read some long-term success stories of real patients as well.

Mark

[dnalex]

Re: Long remissions: how common are they?

by dnalex on Sun Jul 13, 2014 12:56 pm

Hi Mark,

I agree with you that most people would view any hematological malignancy as being a very serious condition. In fact, without having taken (m)any scientific or non-scientific polls, I would imagine that most people would view having any kind of cancer as being a potentially very serious medical condition, and it's not at all crazy to think about getting your life in order regardless of potential outcome. This is still true even if you are healthy and free from any diseases.

[Nico1908]

Re: Long remissions: how common are they?

by Nico1908 on Wed Jul 16, 2014 5:30 pm

dianaiad wrote: "I'm being given a great deal of flak over my wish to settle things like finances, my house, who will care for my elderly parents, a will ... it's as if those around me see my wanting to do this a sign that I'm a hypochondriacal pessimist. I'm not. I just want to get that stuff handled so I can simply live my life and not worry about it."

Hope for the best but prepare for the worst? I think you're a very responsible person!

I hope my boyfriend - who was diagnosed with stage III multiple myeloma in January 2014 - will get to this point soon. Although he is in full remission after five rounds of Velcade-Revlimid-dexamethasone and seems in much better physical condition than many of the posters around here, he often says he "won't be around long".

He's probably just expressing his fears, but I'm wondering if I should tell him that it might be a good idea to get his things in order if he's so convinced.

[cindylouise]

Re: Long remissions: how common are they?

by cindylouise on Wed Jul 16, 2014 7:15 pm

I cannot imagine that anyone receiving a cancer diagnosis is not in shock over it. My husband has many other health diagnoses, and at 59 he "says" he is less afraid of the cancer that is in remission then he is of the heart issues that plague him constantly. I would tend to agree, except for one thing; the fear of death is now ten-fold.

After surviving cardiac arrest, and an anoxic brain injury that seemed very severe, followed by a never ending list of other related heart and health issues, cancer feels like a gunshot. At least for me.

My husband denies this. But he missed big chunks of that time. And his depression tells a different story. He is angry and tearful often. And neither of us are currently able to look at his remission as a long lasting thing. We essentially live life waiting for the other shoe to drop.

I am so happy for those with relatively simple, and long remissions. But I have trouble believing they got to the 5- and 10-year mark without a lot of long-term worry. 1 year out from diagnosis, and I am truly waiting for the other shoe to drop. I can't really believe that a worry free life was there for anyone at this point!