I started my journey 8 days ago when an MRI for excruciating leg pain revealed a large sacral tumor. Since then I have had a biopsy, bone scan, full body X-ray survey (both revealed extensive lytic lesions throughout my body) and lots of lab work.
I am starting both chemo and radiation on Monday and have a consult on the 14th at City of Hope. I am 48 and otherwise very healthy. It appears a stem cell transplant will be the best course once I am in a very close partial remission.
This is all happening very quickly and I am just beginning to process it all. Glad I found this support community!
Forums
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Re: Newly diagnosed with sacral tumor
Hi Cindy,
My name is Mary. I, too, am new to this forum, or any forum for that matter, however, I am not new to multiple myeloma. My diagnosis came in 2005. I'm sure you must be going through a lot right now, both mentally and physically. I'm sure there is a wealth of information on this site, as well as moral support. I'm glad to know you Cindy, and I will be praying for you.
God bless,
Mary
My name is Mary. I, too, am new to this forum, or any forum for that matter, however, I am not new to multiple myeloma. My diagnosis came in 2005. I'm sure you must be going through a lot right now, both mentally and physically. I'm sure there is a wealth of information on this site, as well as moral support. I'm glad to know you Cindy, and I will be praying for you.
God bless,
Mary
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inky100 - Name: Mary
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2005
- Age at diagnosis: 43
Re: Newly diagnosed with sacral tumor
We're sorry to hear about your diagnosis, Cindy, but glad you've joined the forum and shared a bit about your story.
What will be the treatment you'll be receiving? Also, has your doctor shared with you any information about what stage your myeloma is or what your "risk classification" is? (The risk classification is particularly good to know, as it will give you a sense of how aggressive your myeloma may be.)
City of Hope has a number of myeloma specialists, so you will get some valuable perspectives there. Still, don't hesitate to continue to ask questions here in the forum about what you learn and the advice that you're given.
One piece of advice people in the forum often give is to bring to your doctor's appointment a list of questions that you have, and to make sure you take notes on the answers you're given. Even better, if you can, bring someone with you who can help keep track of the information you're given and make sure all questions that you wanted to ask get answered. (Some people here even ask their doctor if they can record their appointments, so they can go back and listen to the information they're given.)
Making sure you keep track of the information you're given is particularly important during your first few appointments, when everything is still so new and can be difficult to understand.
Good luck!
What will be the treatment you'll be receiving? Also, has your doctor shared with you any information about what stage your myeloma is or what your "risk classification" is? (The risk classification is particularly good to know, as it will give you a sense of how aggressive your myeloma may be.)
City of Hope has a number of myeloma specialists, so you will get some valuable perspectives there. Still, don't hesitate to continue to ask questions here in the forum about what you learn and the advice that you're given.
One piece of advice people in the forum often give is to bring to your doctor's appointment a list of questions that you have, and to make sure you take notes on the answers you're given. Even better, if you can, bring someone with you who can help keep track of the information you're given and make sure all questions that you wanted to ask get answered. (Some people here even ask their doctor if they can record their appointments, so they can go back and listen to the information they're given.)
Making sure you keep track of the information you're given is particularly important during your first few appointments, when everything is still so new and can be difficult to understand.
Good luck!
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Newly diagnosed with sacral tumor
We are all sorry to hear about your diagnosis. To echo other sentiment in this discussion thread, you will be good hands at City of Hope and welcome to the Beacon. You will find a lot of excellent support and insight from patients, caregivers, and a host of myeloma experts. It will take some time to get a hold of this -- and I am sure for many on this forum. You are going to have to get used to a new normal ... hopefully for a long time.
We wish the best of luck in your new journey. Please keep us in informed of your progress.
We wish the best of luck in your new journey. Please keep us in informed of your progress.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Newly diagnosed with sacral tumor
I started treatment today with Velcade, Decadron [dexamethasone], Zometa [zoledronic acid] and radiation. I will start the Revlimid after my 2nd negative serum hCG test. At 48, I have only been in menopause for 6 months and despite my husband's successful vasectomy more than 10 years ago, this is a FDA requirement for treatment.
I have not been staged yet. I know my kappa light cells are in the 5000 range. My bone marrow biopsy is Wednesday and there is still more lab work to return. The consulting doctor at City of Hope did not want my treatment to wait for lab results. He felt better to get started now and change if need be.
Today went well and while tired, no other side effects. I know they can be cumulative, but I remain cautiously optimistic!
Thanks for all your kind words. I look forward to your feedback - the good and the not so good,
I have not been staged yet. I know my kappa light cells are in the 5000 range. My bone marrow biopsy is Wednesday and there is still more lab work to return. The consulting doctor at City of Hope did not want my treatment to wait for lab results. He felt better to get started now and change if need be.
Today went well and while tired, no other side effects. I know they can be cumulative, but I remain cautiously optimistic!
Thanks for all your kind words. I look forward to your feedback - the good and the not so good,
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