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Dealing with people quoting old survival data

by dogmom on Fri Jan 29, 2016 6:58 pm

I know there is so much talk about how strides in myeloma have come so far in the last few years. Even our myeloma specialist says so. But then you have someone to come up out of the blue and say "I was so sorry to hear about your husband, my sister's cousin had that and she didn't last any time" or "Don't they give most people with that no more than 2 years?"

I know I should use common sense and listen to the data, but it still nags at me. One person even said "They told my uncle to get his affairs in order." Jeeze. But these were older cases that happened several years ago, probably 10 plus on some.

It just kinda brought me down today. Thanks for listening guys. ;)

dogmom
Who do you know with myeloma?: husband
When were you/they diagnosed?: December 2015
Age at diagnosis: 58

Re: Dealing with people quoting old survival data

by joe on Sat Jan 30, 2016 9:24 am

What is said is true. Some of us with myeloma will live longer then others, but that goes for heart attacks, any other type of cancer or medical condition. So I guess the old saying, live till you die, applies.

joe

Re: Dealing with people quoting old survival data

by JPC on Sat Jan 30, 2016 10:47 am

Hi Dogmom:

Keep in mind that some of the statistics, particularly the older ones, are even worse than the ones you mentioned. The medium age of diagnosis is something like 67 years old. Many of the older patients do not find it early (they start to have age-related aches and pains, anyway, that are somewhat normal at that stage), and are frail when it is uncovered. There was an older statistic that 1/3rd of the patients diagnosed with multiple myeloma did not make it to 3 months. I think that statistic is lower now, but it is probably higher than one would like to think.

Also, multiple myeloma is the second most frequent blood cancer after leukemia, but it is still less than 2% of all cancers, and in the general population, many people do not have a clue as to what the condition entails (most people would rather not want to think of cancer at all in any form, unless they are forced to).

But, exactly as you state, the newer news is significantly better.

It is very unfortunate to get the condition at a young age, but paradoxically, if you do, and if you are healthy outside of the multiple myeloma issues, then for the majority of patients, the myeloma can be brought under control. Once you have it to a state of control (say VGPR or better), then the outlook is much better than even 3 or 4 years ago based on not only the new drugs approved in the last year, but also an overall improvement in the state of the art in sequencing the induction, autologous stem cell transplant (ASCT), consolidation, and maintenance.

They will also over time learn how better to sequence the new drugs into the mix. For example, most drugs initially get approved for relapsed and refractory, but eventually move up the chain and into initial induction to improve progression-free survival and overall survival. That was the story, for example, for Revlimid and Velcade.

Two drugs in particular, are not yet approved for initial induction – I am thinking about Kyprolis and daratumumab – that investigators are working on now to bring into initial induction. I am not a doctor, but just reading the literature, I can pretty safely predict that KRD-dara would probably be better than anything out there now for initial induction, and I am quite sure that some of the investigators are thinking how to get that approved (or something like it).

In the case of daratumumab, there are clinical studies for its application in smoldering multiple myeloma. The thought process behind that is that since the side effects for the monoclonal antibodies are thought to be near term only, that you can do better than just watch and wait before active multiple myeloma kicks in, in some cases. This is quite interesting in that they are working on leapfrogging the newly approved daratumumab (which is only approved right now for relapsed/refractory) even before initial induction.

So you are quite correct, the story is much better than 10 years ago. One of the areas of concern, and I think will start to get more focus, is what to do for some of the bad cytogenetic abnormalities, which about 1/4 to 1/3 of newly diagnosed multiple myeloma patients have. As others have mentioned, I am grateful that right now there is significant progress in multiple myeloma treatment right now, more so than most other cancers.

Rgds,

JPC
Name: JPC

Re: Dealing with people quoting old survival data

by dogmom on Sat Jan 30, 2016 11:24 am

Yes, daratumumab is the drug I think that our myeloma doc was referring to that was discussed at his conference he went to this past December. He says they have great hopes for it. It has showed excellent results in clinical trials and since being released for use.

dogmom
Who do you know with myeloma?: husband
When were you/they diagnosed?: December 2015
Age at diagnosis: 58

Re: Dealing with people quoting old survival data

by moonscape on Sat Jan 30, 2016 7:20 pm

I imagine it's a near universal question when diagnosed with cancer: how long do I have to live?

Cancer had not been on my radar (was shocked!), and that was my first internal question when the word arose. What I've learned in this short time is: nobody knows. Not my docs, not the statistics, not other survivors, not anyone.

Last weekend at a blood cancer conference in San Francisco, even there they were showing slides and statistics on survival based on data ending in 2007. I looked at them with interest, yet feeling they had minor relevance to me personally.

The odds could beat me, or I could beat them. So as I felt a sense of Zen creep over me, I shifted focus to The Now, which is after all the most important time of our life.

moonscape
Who do you know with myeloma?: me
When were you/they diagnosed?: 11/2015

Re: Dealing with people quoting old survival data

by Cheryl G on Sun Jan 31, 2016 12:55 am

I don't believe the statement "multiple myeloma is the second most frequent blood cancer after leukemia" is correct. Lymphoma and leukemia are both more common than multiple myeloma, by a factor of 2 or more. See:

http://www.pfizer.com/files/news/ash/hematology_backgrounder_2010.pdf

Cheryl G

Re: Dealing with people quoting old survival data

by dogmom on Sun Jan 31, 2016 6:25 am

Moonscape, I will try to think of this of that when my mind starts to race. :) Yes, I work as a med tech, and we diagnose much more leukemia and lymphoma than we do myeloma in our lab.

dogmom
Who do you know with myeloma?: husband
When were you/they diagnosed?: December 2015
Age at diagnosis: 58

Re: Dealing with people quoting old survival data

by JPC on Sun Jan 31, 2016 10:11 am

Good day Cheryl. Thank you for the statistics on the relative frequency of the multiple myeloma, leukemia, and lymphoma. I did not know that lymphoma was that prevalent. I guess I mis­under­stood something I read. Thank you for setting the record straight. Regards, JPC

JPC
Name: JPC

Re: Dealing with people quoting old survival data

by Nancy Shamanna on Sun Jan 31, 2016 11:29 am

Thanks, Cheryl, for that link. It seems that in the treatment of leukaemia, the use of the TKI inhibitor, Gleevec (imatinib), has been a real 'game changer'. This apparently has led to a lot more optimism for leukaemia patients!

I have read the statistic that multiple myeloma is only 1% of all cancers. It can be classified as a 'rare disease' too. That I guess is why sometimes it is challenging even to educate others about a disease they have not heard of!

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Dealing with people quoting old survival data

by Cubs Fan on Mon Feb 01, 2016 7:46 am

Regarding how people are reacting to your husband's diagnosis and assuming the worst ... given that we're just 6 months ahead of you in this with my mother, and it's all still fresh, I can completely relate to that. And the most absurd part of my experience was that the people who made it sound like it was the worst possible diagnosis were nurses who hadn't practiced medicine in 20 years!

Fortunately, both our original oncologist and myeloma specialist have a great ability to de-escalate our fears and make the disease sound manageable. I hope you and your husband find the same!

Cubs Fan

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