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cristy805
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Posted: Sat Mar 28th, 2009 06:19 am |
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| I just learned of my 70 year old grandfather that has been diagnosed with multiple Myeloma, all of the articles we are finding is saying that there is no treatment or trials for someone his age, is this true? Is there really no hope? they gave him 5 years he is in a "stage 1" where they just want to sit around and wait for something to happen? There has to be something to get ahead of this, right???
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dpcaregiver
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Posted: Sat Mar 28th, 2009 02:28 pm |
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Cristy
I know that Huntsman has successfully completed a stem cell transplant on an 85 year old, so I would think that Yes, there is hope, especially if your grandfather is otherwise in reasonably good health. I expect you will be getting a comment from the chat moderator who is in direct contact with Dr. Tricot and they will tell you something similar. Help your grandfather to get to a Myeloma EXPERT. That is the key!
Don't take a negative no treatment diagnosis without checking more options. Don't know where you live, but if you can get to Huntman in Utah and get grandpa checked, at least you'll now you tried everything. There are people that come from all over the world to be treated at Huntsman for Myeloma. My husband (62)completed his first of two transplants a month ago and we have great hope for the future. Huntsman has 10 + years of data to support at least 10 or more years of complete remission with their protocol.
Good luck to your family!!
dpcaregiver
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cristy805
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Posted: Sat Mar 28th, 2009 05:29 pm |
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| Thank you so much, I will be checking on that. That is actually how I found this chat site. I have done so much research over the last couple of weeks and have been mailing that info to my grandparents, Info is so vital in a situation like this. I really appreciate your responce it has given me a little more hope.
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dpcaregiver
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Posted: Sat Mar 28th, 2009 05:54 pm |
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cristy,
If you are interested, you can email me directly and I can send you the link to our blog. I've een trying to keep a journal of this cancer trek from the caregiver's point of view. There are good days and bad days of course, but I try t laugh at some of the stuff we go through This is not an individual's disease--it affects the entire family. Your grandparents are fortunate you are helping them. Be careful as you research the net, so much is OLD and outdated and that can be very discouraging so look for the newer stuff. you can find me at petersonemail@hughes.net
denese
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DougC
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Posted: Sat Mar 28th, 2009 06:03 pm |
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Assuming your grandfather is basically in good health, you should have lots of hope. I think most "experts" agree, myeloma is a very controllable disease. As I'm sure you're discovering, there are many schools of thought on how to best treat myeloma. There are many combinations of drugs and transplants being used. In most cases, the treatment plan followed will be decided upon based on the extent of the disease, the doctor's philosophy, and the patient's wishes. I wouldn't get too excited at this point because your grandfather's medical team is in a holding pattern. In some cases that may be the best approach, and if anything, since myeloma is a little less aggressive…as I understand anyway…your family has time to make a decision that's best for you. Like dpcaregiver said, the Huntsman is an excellent place to start.
You had mentioned trials, keep in mind, trials are not just conducted on individual drugs. Trials are also conducted on treatment schemas…an entire treatment package consisting of drugs, transplant, timing of administration, all that goes in to a scheduled treatment can be on trial.
"Lots of hope" All I can really offer is make a decision that leaves you with no regrets
Best of luck to your family
DougC
For your Trial Research (University of Utah and Huntsman are the same thing under the trials data)
http://clinicaltrials.gov/ct2/show/NCT00670631?term=university+of+utah&rank=26
http://clinicaltrials.gov/ct2/homeLast edited on Sat Mar 28th, 2009 06:07 pm by DougC
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Annick
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Posted: Mon Mar 30th, 2009 05:30 pm |
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Hi Cristy,
As Denese and Doug C have stated, there absolutely are treatment options for someone your grandfather's age. What that treatment is will depend upon his overall physical health, any other diseases or conditions, insurance coverage, and personal preference. But, rest assured, there are plenty of patients his age and older that have been successfully treated. The ideal situation for your grandfather is to find a specialist that has a lot of experience in dealing with myeloma patients and who has a track record of prolonged patient survival. "Wait and see" may be an appropriate response for someone who is asymptomatic and doesn't show any signs of progression. It is not an appropriate response for someone who is already symptomatic (fatigue, bone pain or fractures, prone to infections, etc) or for someone who is currently asymptomatic but whose markers are steadily climbing, a sure sign of progressive disease. Practitioners who do not often deal with myeloma sometimes make the rookie mistake of employing the "wait and see" approach too long, to the patient's detriment, so again, this is why it's important for your grandfather to see a specialist and not just a general oncologist.
Best of luck to you and your family, and if there is something that we at Huntsman can help you with, please let us know. Take care!
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Chat Moderator
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Posted: Mon Mar 30th, 2009 05:58 pm |
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Hi Cristy,
Looks like you've had quite a few helpful responses, and let me be the fourth to say that there certainly are effective treatments available and that his age does not matter but rather his overall physical health.
It would seem that the next best step to take is to finally resolve whether or not he needs treatment, since it looks like there's a bit of uncertainty on that front. To do this, he'll need proper and thorough testing, which a myeloma specialist can do for you to make sure you have all the key details you need to understand your grandfather's specific type of myeloma.
These tests include bone marrow studies with cytogenetics and FISH (Fluorescence In-Situ Hybridization), serum free light chains, B-2 microglobulin, albumin, and either an MRI or PET/CT scan.
Then you will truly know if treatment is indicated.
Please let us know if you have any other questions. We're here to help.
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