Thanks for your comments. That must have been scary to go through several regimes before finding one that worked for your cells. I'm glad that Velcade is working for you, I have heard of it and understand that there are other options I have before I would need to resort to another stem cell transplant. My myeloma cells responded quickly to chemo, but my Oncologist noted that though this was a good thing, it could signal that my MM would also bounce back quickly from treatment. This has proved to be true, and I sometimes characterise my disease as being "a bit frisky" compared to some examples where the cells are more "lazy".
I find that having an understanding of my cells personality helps me have an active relationship with my MM, rather than a passive one where I wait to see how it is going to behave.
I chuckled at your comment about educating your computers dictionary about Myeloma. I didn't even really know what bone marrow did before being tossed into the oncological world.
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I have multiple myeloma, diagnosed in Oct 2005, chemo then stem cell transplant in Jan 2006. Remission until relapse in mid 2008. Firstly I have to say that my quality of life is very good and I am grateful that there is so much for me to share and enjoy.
After taking Thalidomide for over a year, I found the side effects increasingly difficult to live with, so have been almost a month on Revlimid. So far - better in some, worse in others. Next week I see my Oncologist and find out if it's managing the MM well enough, so I am in that strange limbo that many of us know - in between blood test and results. Under the Thalidomide, my cancer levels were slowly rising so I have fingers crossed that the Revlimid is working super-well.
cheers - Tjebi.
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I have Multiple Myeloma and have had several courses of chemo, an autologous stem cell transplant and am on maintenance drugs now - 3.5 years after diagnosis. I was too caught up in the momentum of my initial chemo and treatment to consider anything outside that but in the recovery period after my stem cell transplant I was desperately depleted and beset by woes similar to chemo side effects. A close friend suggested a traditional chinese medicine practitioner that specialises in cancer patients. I kept on with the western medicine of course, and have taken care that the trad chinese (TCM) herbs did not interfere with my western drugs, but I have to say that the TCM treatment which has included herbs and acupuncture has been very helpful and supportive to me in managing my symptoms and more importantly, my energy levels and stamina. I am the kind of person that asks a lot of questions of my practitioners, and I've really found that the TCM interpretations on how the body works have helped me a lot. They are definitely complementary to my western treatment and I would encourage anyone dealing with cancer to try it for themselves. I am based in Melbourne Di, so I don't know of anyone in Sydney but I do think it's worth finding out if there is anyone that has experience with cancer patients because you can then benefit from their understanding of our specific needs. I guess it's also worth being cautious of unscrupulous or fraudulent people with wild claims about wonder cures etc. Proper accredited TCM practitioners are the way to go in my opinion.
Oh - I mustn't forget to mention my secret weapon - meditation. I meditate at least once a day, and have found that to be the single most helpful and supportive complementary practice that I do. I use a mix of mantra and breathing based meditation, but guided meditations are just as beneficial I think. If you are wanting to start out with meditation, you may find that it's difficult to find a peaceful place, your mind busy with thoughts, and feel like "it isn't working". I would encourage you to persist - even with the thoughts, it does work and as your mind and body get used to meditating, the peaceful places you will find can be quite exquisite. - cheers - Peter (tjebi).
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.