Hi BBrown
Thanks for the encouragement.
After posting on the forum yesterday I felt like I'm not alone in all of this and danced around my kitchen with Ellen ( de Generis). Well, "dancing" might not be the correct term, but moving around perhaps would do!
I've had Zometa since August (with a break for the transplant) but I haven't had any pain relief from it at all. I'm so worried about the osteo-necrosis this bisphosphonate can bring on, but my doctor wants to start it up again soon.
I'm excited today as I'm having my Hickman Line removed, and I can't wait to not have to tuck long tubes into my bra or have them hanging there when I take a shower. It looks like I should plug myself into an outlet or the TV. I do admit, that for the various blood takings and infusions it was great not to be poked with a needle but I'll be happy to see it go.
i will stay positive - I'm an eternal optimist - and I'll take any advice anyone who's been through this can offer.
Hope you are doing well too.
Take care
Krysia
Forums
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KrysiaR - Name: Krysia
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2012
- Age at diagnosis: 58
Re: Hi everyone in multiple myeloma land!
My experience with finally getting the correct diagnisis is unfortunately too typical. In early December 2010 I awoke with back pain that was excruciating. I went to the local ER and was told that I had a muscle spasm. They treated me in a dismissive manner and did not bother to take an X-ray. If they did they would have discovered that I just had the first of what became 5 compression fractures.
In re. to exercise, I have to push myself to get up and go but I do find it worth it. The compression fractures ended my participation in the sports that I loved (tennis and softball) but I now walk, swim and jog in the pool, and work out at the gym. It does not bring me the same level of emotional satisfaction that the prior activities did but I still feel better physically and mentally for doing it. I want to encourage folks to do something, even a walk around the block, even though I know myself I often to not feel like getting up from the recliner.
The treatment has also caused me to develop lymphedema in my left leg which in some ways is more annoying than the cancer. Keeping my leg elevated when I can, wearking compression hose, jogging in the pool, and doing toe and foot flexes have helped. On the other hand, a # of things that have been recommended, manual lymphatic drainage, a compression pump, and bandaging have done nothing. I would be interested in hearing from anyone else who has had to deal with lymphedema and any suggestions they may have.
My best wishes to you all,
Tom
In re. to exercise, I have to push myself to get up and go but I do find it worth it. The compression fractures ended my participation in the sports that I loved (tennis and softball) but I now walk, swim and jog in the pool, and work out at the gym. It does not bring me the same level of emotional satisfaction that the prior activities did but I still feel better physically and mentally for doing it. I want to encourage folks to do something, even a walk around the block, even though I know myself I often to not feel like getting up from the recliner.
The treatment has also caused me to develop lymphedema in my left leg which in some ways is more annoying than the cancer. Keeping my leg elevated when I can, wearking compression hose, jogging in the pool, and doing toe and foot flexes have helped. On the other hand, a # of things that have been recommended, manual lymphatic drainage, a compression pump, and bandaging have done nothing. I would be interested in hearing from anyone else who has had to deal with lymphedema and any suggestions they may have.
My best wishes to you all,
Tom
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Tom184 - Name: Tom
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: January 2011
- Age at diagnosis: 64
Re: Hi everyone in multiple myeloma land!
Hi Tom
You're right that too many doctors dismiss backaches and other pains as something else without a proper diagnosis. I actually went by ambulance to ER where they did cursory tests and put me on i/v Morphine for several hours and sent me home even though I couldn't walk. My oncologist actually made a case study and presentation about my situation regarding how to discover Multiple Myeloma sooner
So sorry about the lymphedema. I had legs like tree trunks after the hip surgery, but nothing like what you are going through. I hope you find some answers and relief soon.
Take care
Krysia
PS Perhaps it would be good to post your question under the title Lymphedema as it might get lost here.
You're right that too many doctors dismiss backaches and other pains as something else without a proper diagnosis. I actually went by ambulance to ER where they did cursory tests and put me on i/v Morphine for several hours and sent me home even though I couldn't walk. My oncologist actually made a case study and presentation about my situation regarding how to discover Multiple Myeloma sooner
So sorry about the lymphedema. I had legs like tree trunks after the hip surgery, but nothing like what you are going through. I hope you find some answers and relief soon.
Take care
Krysia
PS Perhaps it would be good to post your question under the title Lymphedema as it might get lost here.
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KrysiaR - Name: Krysia
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2012
- Age at diagnosis: 58
Re: Hi everyone in multiple myeloma land!
Hi everyone, I'm a newly diagnosed smoldering multiple myeloma as of 1 year (no CRAB symptoms). My primary care doctor noticed on a routine lab that for the past two lab draws (2011 & 2012) my Globulin level was slightly above normal. He ordered further test and we discovered my elevated IgG. Thus began my journey. I work in the medical field (Dietitian) and I've noticed that most of the routine lab work don't test for Gamma Globulin levels.
Why isn't this routine. Especially with the possible early treatment options and the possiblity of a missed diagnosis?
Why isn't this routine. Especially with the possible early treatment options and the possiblity of a missed diagnosis?
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Byron
Re: Hi everyone in multiple myeloma land!
Hi Byron
Thanks for posting on my introduction. I think it would be better for you to start a new post introducing yourself to others with more knowledge to respond as I think your message has got overlooked.
I'm afraid I can't give you any advice as I'm not in the same boat as you - but good luck with your journey through all of this.
Thanks for posting on my introduction. I think it would be better for you to start a new post introducing yourself to others with more knowledge to respond as I think your message has got overlooked.
I'm afraid I can't give you any advice as I'm not in the same boat as you - but good luck with your journey through all of this.
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KrysiaR - Name: Krysia
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2012
- Age at diagnosis: 58
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