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Ann Simmons
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Posted: Thu Aug 20th, 2009 08:43 pm |
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Hello Moderator,
There is this question about since I have already had the radiation on my head and now my doctor checked my lab work every 3 months this last in August I don't have to go back until December 2009. He says that my m-protein is not that high but he don't tell me how high it really is. So I don't know if I need to be asking more questions or not. I once asked him if there was any thing else I could do and he said nothing else. I have rib pain and leg and back pain but, he don't seem to think that it is coming from the Myeloma and of course I don't know. Maybe I am just being over anxious since he tell me my protein is not that high. Sometimes I feel more frustrated not feeling sure about things. Where am I going wrong. I also asked my doctor if surgery could have been done on my head and he said that there was to much bone damage that the steel plate would have to be to big although he said he would not say never. Just some information from someone like you who sees this a lot more I am sure helps a whole lot.
Thank you so much,
granny68
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denesepete
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Posted: Mon Aug 24th, 2009 05:27 pm |
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Hi Ann,
My husband was diagnosed with MM almost a year ago. Since then he has had two stem cells transplants and will be on maintenance chemo for one to two years. We are fortunate to have Dr. Zangara at Huntsman as our Myeloma Dr.
From reading your information it appears you are not seeing a Myeloma specialist. This is hugely important. Don't delay, get a second opinion from an MM specialist. Can make a world of difference. Of course, my first choice would be Huntsman, they have scienntific data for long term remission.
Good luck to you in this fight.
denese P
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Ann Simmons
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Posted: Tue Aug 25th, 2009 03:06 pm |
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Hi, Denese P
From: Ann
Date: August, 25, 2009
Thank you for the e-mail. I am so glad that your husband is doing good and hope he is in remission. My prayers will go out to him to not have any more problems. Maybe I will get brave enough to get that second opinion from Huntsman. I live in northeast Mississippi so I am a few miles from Utah but, I can get there and I feel that I would feel better if I had a diagnosis from them. It would be hard for me to drive that far but, I will if things don't get better.
I also was diagnosed last June, 2008 but, my tumors were found in 2004 by accident. The MRI report probability of metastatic bone disease. My medical doctor said he was keeping watch on them and for me not to worry he didn't think it amounted to much. Then in 2007 I started feeling very fatigued and run down and didn't seem I could get to feeling better. Then in February of 2008 I went and had another MRI run and electrophesis test run that is when my medical doctor decide to send me to the hematology oncologist. He did MRI, full body bone scan, Bone marrow biopsy and another 24 hr. electrophesis test. Then quickly told me I had to have radiation. So I had radiation for 5-days in a row. He said that surgery was not feasible to much bone damage to my skull. I will say after the radiation in about 3-weeks I started to feel some better and did not have much pain at all for a couple of months but, now I have a lot of bone pain with no cause. The doctor seems to think my protein level is to low to cause the bone pain. I don't know what is happening. Also started having right rib pain and he did a scan of my ribs and couldn't find anything he said except 3- lesion on my liver size from 2.5 to 3.1 cm. He says not to worry about them. Of course I can't help but, to worry some. My doctor seems to think that mine is pretty slow moving but, the tumors still cause me some problems also. I feel there are to many loose ends that I don't understand.
Thank you, for listening to me it helps a lot to have someone who is living to talk to.I would like to know what kind of symtoms your husband experienced before and after his treatments. I wish him the best in his health and treatments.
Ann
You can also e-mail me at simmons9380@bellsouth.net
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DougC
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Posted: Wed Aug 26th, 2009 02:28 am |
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Ann - I'm not a doctor, just a myeloma patient. I was dx in Nov 07 and have since completed the tandem transplant procedure at the Huntsman. I've been in complete remission since Jan 08.
Now that that's out of the way, I'd like to give you my advice...kick that doctor to the curb and find a new one. His plan has resulted in your disease moving to your liver. As far as I know, myeloma in the soft tissue is a rare thing. However, when it happens, it's not good. You need treatment...and I'm not talking radiation. Please, find a MM specialist and go see him. If not the Huntsman in Utah, then the University of Arkansas, N.C (Duke), Mayo FL, M.D. Andersen Houston....just get to a doctor that has a clue.
I apologize for my frustration.
I wish you all the best.
DougC
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Ann Simmons
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Posted: Wed Aug 26th, 2009 02:18 pm |
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From: Ann
Date:2009-08-26
DougC, I appreicate your advise because that is what will help me to understand what I need to do from someone who is going through MM. I am so thankful that you are in remission praise God and continued health.
What was the criteria for that the doctors go by to go to the tandem transplant. My oncologist tells me there is nothing else that can be done now. I even asked about taking a vitamin that might help with energy. He told me there was nothing I could do and nothing he could do as of now. He tells me my protein level is not that high.
Believe me I got a copy of my lab work sheet sent to me about a week ago and I can't read it and have not heard from my doctor so I don't know if he didn't like for me to ask that it be sent to me. He had already told me that I would not know any more if I had the report when I asked for it once before. Everybody that I talk to at the clinic that uses him for their oncologist tells me he is one of the best so maybe it is me because I feel so at loose ends with all this. I know that this is more than you would want to know but, it explains why I feel the way I do. If there is something that will better to do and enable me to live a better life if they have not waited to long I would love to know and have a choice. Sometimes I think that my age may have something to do with it and I don't act like I am dying I try to not change anything I do or any way I live I try to keep doing all the things I have always done even though the pain gets to me at times I try my best not to let on to my family.
I know the doctor is not going to like it when I ask him about second opinion and I will if things don't get better.
Wishing you all the best in health.
Ann
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Ann Simmons
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Posted: Wed Aug 26th, 2009 02:27 pm |
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From: Ann
Date:2009-08-26
Hi Moderator,
Thank you for responding to my message. It is so nice to be able to talk to someone who has on hand information I am so grateful for finding everyone. I feel better about getting the response that there is a lot going at the Huntsman. I hope that I will find out exactly where I stand from my doctor so I can make up my mind about coming to Utah and getting something else done if need be. There is more I would like to know about what you all look at as for the criteria for tandem transplants.
Thank you so much.
Ann .....granny68
Ann
granny68
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DougC
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Posted: Thu Aug 27th, 2009 02:08 am |
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Ann - I can't answer your question about the Huntsman's criteria for tandem transplant treatment; nor can I offer other treatment options. You can read the criteria for their tandem transplant trial by clicking on the research link found on the Huntsman home page. I have no idea what treatment plan they'd follow with you.
I'll tell you what I've observed talking with other MM patients and other type cancer patients at different onco clinics I visit. Almost ALL cancer patients fall in love with their doctor. What I mean is, they think he/she is the best in their field, the doctor cares deeply for them, and the patient is VERY reluctant to offend the doctor by asking questions, gaining a second opinion, or leaving for another doctor. It's almost like the patient feels they owe the doctor something....patients are so loyal. Your guy may be one of the best general oncos/doctors in your area; but, I doubt he's one of the best at treating Myeloma.
I do see "one of the best" Myeloma docs out there...the Huntsman's Dr. Tricot. I also see two different general oncos...though both know who's calling the shots, that's Tricot. Your doc should be encouraging you to learn as much as you can about your disease, not withhold information. Don't settle, get a second or third opinion...find a Myeloma specialist. From my cheap seats, your guy is broke.
Bottom line, have NO regrets about your treatment choices
Wishing you nothing but the best
Doug
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Chat Moderator
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Posted: Fri Aug 28th, 2009 07:53 pm |
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Hi Ann,
You are very welcome. Let us know what else we can do for you. You can post questions here in the chat, or send a private e-mail to myeloma-web@hci.utah.edu if you prefer and someone will get back to you soon.
Take care,
Chat Moderator
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