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Diana
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| Joined: | Wed Jan 7th, 2009 |
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Posted: Sat Jan 10th, 2009 02:53 pm |
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What are the chances of remission for my mother-in-law (Donna)? We have not been able to talk to the doctor since finding out she is in stage 3. Also do the remissions last very long, I know you can't really say for sure but on an average with a person in her condition?
If we were to come to Huntsman for a consultation would we be able to stay a short time and go home to continue the treatment and deal with the local doctor-who does have a good reputation but is not a Myeloma specialist-and come back to you for monitoring?
I would like to suggest some herbs to help her build her immune system what do you suggest or should we not? I have read hot lemon in water would cleans the liver with the medication and radiation she is subject to plus she already has gallbladder stones might be a good thing for her. What do you think?
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DougC
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Posted: Sun Jan 11th, 2009 11:20 pm |
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I'm also curious about supplments
The tandem transplant treatment given at the Huntsman has a desired impact on the immunoglobulins. Meaning, they counts can go way down.
Since the drugs we're taking as part of treatment/maintenance also suppress our immune system (white blood cells and immunoglobulins), is it counter productive to take supplements that are designed to strengthen our immune systems? I have a bottle of Noni Juice a friend gave me and I've yet to try it since I don't know if it would interfere with the dex, velcade or revlimid that I'm on.
If someone out there could shed some light on whether or not it's safe or counter productive for us to take supplements designed to strengthen our immune systems, I'd love to hear it.
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Chat Moderator
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Posted: Mon Jan 12th, 2009 11:05 pm |
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Hi Diana,
I work for the Myeloma Program at Huntsman Cancer Institute and have consulted with some of our staff to get answers to your questions.
We can tell you more about your mother-in-law's chances for remission based on whether or not she has good or bad prognostic markers. To know this, our doctors run chromosome studies and gene arrays. The results of those will be the most relevant information in being able to say what the likely outcome for her will be.
In general, though, the median survival of newly diagnosed myeloma patients who have the proper treatment and are in good general health is 10 years.
It would depend on what type of treatment is recommended for your mother-in-law as to how much time she would need to spend in the area close to our hospital. If a patient is having a transplant with high dose chemo then, for safety reasons, he or she would need to stay close to HCI so we can monitor them. But after the transplant is done and the period of vulnerability has passed, patient will go home and the rest of the treatments can certainly be done by a local doctor.
As for herbs, our doctors usually caution against those. Some herbs can actually be contaminated with bacteria or fungus, and this can be dangerous for a myeloma patient. Herbs also can have the potential of interfering with treaments. It is tempting to want to turn to herbs since there are many articles out there that talk about their benefits, but the dangers must also be considered. The Food and Drug Administration does not regulate herbs like it does conventional drugs. If a patient does take herbs, though, he or she should always tell the doctor exactly what they are taking.
However, our doctors do recommend taking a multi-vitamin, calcium, or vitamin D. Those are all safe and can be of benefit.
Please let me know if you have any further questions. We're here to help.
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dpcaregiver
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Posted: Fri Jan 16th, 2009 07:42 pm |
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 Diane
If you do decide to try Huntsman (I recommend them highly) then I thought I would let you know that we are staying at the Residence Inn just a few miles from Huntsman. We have a one bedroom suite with a full kitchen and two tvs. Well worth the money. I too was not thrilled about having to stay close to the hospital for 3 weeks at a time. However, once they started treatment it was a HUGE mental reliever for us. My husband has MM and was diagnosed 10/2008. He just finished with the initial 4 days of chemo. Nothing went wrong, but his anxiety was pretty high the first couple of days and it made him feel much better to be close. As his caregiver it was good to know the doctors and staff were so close too. The hotel is extremely helpful. I have been changing sheets and towels out myself as I don't want the maids in the room when my husband's immune system is so compromised, but they deliver clean sheets and towels every morning and they even installed a hand held shower which makes bathing so much easier. May not be great having to be away from home, but the outcome (longer, better quality of life) is well worth it for us.
Good luck to you.
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DougC
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Posted: Sat Jan 17th, 2009 02:27 am |
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Sounds like things are moving along nicely....that's great news! The anxiety level went up with each treatment for me. Adivan was a life saver. If your husband hasn't tried it yet, it might be worth considering. Great to hear you found a nice place to stay and that things are going well.
Best of luck
Doug
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cosmetologist
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Posted: Mon Jan 26th, 2009 04:37 pm |
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| hey doug my name is contours and i read your reply to remission.. r u on velcade, revlamid and thaiidimide? and why if you dont mind me asking. by the way i just joined this site
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DougC
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Posted: Tue Jan 27th, 2009 12:55 am |
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contours - I'm presently on a Rev/Dex/Velcade schedule. This cocktail is part of my first-year maintenance therapy (post tandem transplant). I suspect since you thought I was on both revlimid and thalidomide, your question of why was more geared towards it not making any sense to be on two like drugs (rev and thal). Is that correct? Or, are you asking why I'm taking maintenance drugs at all?
Welcome and I hope if you're in a fight with this beast all works out well
Doug
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