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yorkbergers
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| Joined: | Thu Sep 24th, 2009 |
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| Posts: | 3 |
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Posted: Fri Oct 9th, 2009 12:28 am |
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Hello everyone, my name is Sharon I am 40 years old and new to the site, my doctor sent me to a neurologist for my back pain, I had been through several test and they found nothing, he was surprised that nobody has done any lab work on me. I remember saying to him 'Let's get it done". That was on a Monday, by Friday I got a phone call because I had this abnormal m protein that showed up. The neurologist told me that he was calling a hemotologist so he could get me in as soon as possible.
While I was waiting for the appointment they asked me to do the 24 hour urine test, I had already done a urine test for the lab, the results showed that the one I did at the lab had abnormal and the one I did at home did not.
I have been back to the hemotologist and they set me up with a specialist at Johns Hopkins In Maryland. the doctor told me that if 10 is where they start treatment I am about an 8 or 9. He thinks that it will eventually get to mm.
My hands are really bothering me, is this a sign of progession or is it normal? Would they treat me very aggressive because of my age? Where would I be treated at, doctors office or hospital? How long would I stay if it were a hospital? Any input would be appreciated.
sincerely,
Sharon
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DougC
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| Joined: | Wed Dec 26th, 2007 |
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Posted: Fri Oct 9th, 2009 01:50 am |
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Hi Sharon. I think the answer to most of your questions depends on where you're treated. John Hopkins isn't going to use the same treatment plan as the Huntsman, Mayo, or anywhere else. There are many treatment plans and approaches out there. Your challenge is to find one supported by good solid data...even better, proven success. There are so many variables to consider. My only advice is, stick with a proven winner (specialist) and have no regrets. You're young, as am I. I went with the Huntsman and haven't looked back....so far so good. I'm sure you'll get an official response from the Huntsman to your questions. However, I'm also sure they can only tell you what they do...which you should investigate by reading their website thoroughly. Also, for general peer discussion, cancercompass.com has a wonderful myeloma board. However, message boards are just that, message boards. Always seek professional advice and answers to your questions. That's what's nice about this board, true specialists answer your questions...within reason of course.
Best of luck to you....you're gonna be ok.
DougC
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Posted: Fri Oct 9th, 2009 09:52 pm |
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Hi Sharon,
In our opinion, if you’re having symptoms of myeloma like backpain, there would not be an advantage to waiting to start treatment. Other symptoms of myeloma include anemia and changes in kidney function, so monitor for those.
Since your hands are bothering you, you may want to check to see if you have amyloidosis (a condition related to myeloma) as well, since that can cause neuropathy.
We’d also recommend having radiologic scans like an MRI or PET/CT to check for bone lesions.
At Huntsman Cancer Institute, we take an aggressive approach to treatment and, given your young age, you are likely an excellent candidate to be able to have more aggressive treatment.
We believe treating multiple myeloma aggressively on the front end is the key to long periods of remission, a longer life, and a better quality of life for multiple myeloma patients.
If you hit the myeloma cells hard at the beginning when they have not yet been exposed to treatment before, you will catch them off guard. Whereas, if you take the approach of starting off with less aggressive treatment and only moving to more aggressive treatment if a patient relapses, the myeloma cells have in the meantime grown smarter. The myeloma cells sense that you are trying to get rid of them, and they have time to grow resistant to treatment. Treatment will therefore ultimately be less effective.
We typically treat multiple myeloma with a regimen involving tandem (two) autologous stem cell transplants and maintenance therapy thereafter. This treatment method has been proven to result in median survival rates of 10+ years.
Our patients stay in the Salt Lake City area for about a month for each transplant. The transplants are outpatient procedures, but patients need to stay close to the hospital so they have immediate access if a complication occurs. Our patients typically stay in extended-stay facilities during this time. They have their clinic appointments during the day, but at the end of the day can go back to where they are staying to get some privacy and time away from the hospital setting.
We find that patients who have inpatient transplants tend to get more depressed and don’t get up to exercise as often. Trying to exercise a little bit during treatment (or just get up and do a little walking) can decrease the chance of cancer-related fatigue, help the body recover, keep muscles from losing strength, improve mood, and combat insomnia. So those are just some of the reasons we prefer the procedure be outpatient.
Let me know if you have any other questions about myeloma in general or our treatment approach at Huntsman Cancer Institute.
Doug is exactly right. There are many treatment approaches out there, so it’s important to find a doctor you trust and one that, more importantly, has been studying myeloma for many years and has research data to back up his/her approach to treating myeloma. Ask the doctor how many myeloma patients he/she has treated with the treatment they are prescribing for you and how many are still doing well after 3, 5, or 10 years. Knowing the answers to things like this, I think, can help you feel like you are getting the right treatment from the right myeloma specialist.
You can find out more information about Huntsman Cancer Institute’s Myeloma Clinic and our approach to treatment at:
http://www.fightmyeloma.org
Take care,
Chat Moderator
Huntsman Cancer Institute
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