Hi... I was diagnosed in September of 2011. I am in the middle of the 5th cycle of 6 cycles of treatment. Dex - Revlimid - and a trial chemo (that helps with neuropathy). My attitude has been pretty good till now. I've had reactions to the drugs but nothing I couldn't handle. I guess I've kinda been in denial. However - In the middle of May - I start my stem cell harvesting and then the transplant the first week in June. It's becoming REAL... especially since I just made an appointment with someone for wigs.... Well that's my background but not my problem.
Here is my question/problem. I use to have really bad lower back pain and it kinda disappeared after I started treatment. The pain came when walking (and as odd as this will sound) especially while doing the supermarket cart! Anyway - all of a sudden this week it came back!
Has anyone had symptoms that left and then came back? It's almost scary. I know my numbers are going down, but all of a sudden I FEEL like I have cancer between the back pain coming back and I guess the accumulation of all the chemo is starting to take its toll (fatigue I never felt before and palpitations).
If anyone has had an experience like this, I would really like to know.
Thanks for reading this
Gail
Forums
Re: Needing Advice
Hi Gail!
Were you on biphosphonates as well as part of your original dex/lenalidomide therapy?
Were you on biphosphonates as well as part of your original dex/lenalidomide therapy?
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Needing Advice
I would have to say no because I never heard of that.... but the only thing I omitted was a once a month zometa IV
Re: Needing Advice
Hi Gail!
Bingo!!
Zometa is a bisphosphonate...if you are no longer taking it...you may want to mention the return of your symptoms to your doc and have a bone scan on your lower back, pronto!!
Hopefully, you are also aware of the ONJ that can occur with Zometa, despite it strengthening your bones.
Good Luck to you....
Bingo!!
Zometa is a bisphosphonate...if you are no longer taking it...you may want to mention the return of your symptoms to your doc and have a bone scan on your lower back, pronto!!
Hopefully, you are also aware of the ONJ that can occur with Zometa, despite it strengthening your bones.
Good Luck to you....
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Needing Advice
Thanks Suzierose.... I haven't stopped it but I do plan on telling the Dr. about how odd it is that it came back after being gone so long and yet I see my numbers weekly and they are going down.
:::::sigh:::::
:::::sigh:::::
Re: Needing Advice
If you are still taking the Zometa, have they changed the dosage, or the rate at which they administer it? One of the side effects of Zometa can be muscle and bone pain, though for me it was always in the legs. I was originally given it through IV over 15 minutes, and the pain was fairly singnificant for a day or two. When they slowed it to a 30 min period, the discomfort was reduced to where I only get some moderate muscle ache now.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Needing Advice
It is natural to worry and assume that the new back pain is being caused by myeloma. I have been there myself several times over the past 21 years. However, low back pain is one of the commonest complaints in the general public. With your myeloma showing improvement and the sudden onset , the pain is most likely to be mechanical back pain unrelated to the myeloma progressing . See your doctor (not just your oncologist ) to be assessed. If needed, an MRI will provide the most information if it is not resolving with conservative measures. A nuclear medicine bone scan is of limited value in myeloma as to be positive, it requires new bone formation by osteoblasts whose activity is blocked in myeloma. Patients can have widespread myeloma but a negative bone scan.
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bond007
Re: Needing Advice
Hello from the cold and gray Northwest,
If you numbers are falling then it is much less likely that this is due to a return of your myeloma. Several possible causes come to mind:
#1. You have a new bone fracture in your lower back BUT your myeloma is in control
How can this happen ? It is very important to remember that there is no drug that works 100% of the time in 100% of patients. Bisphosphonates are not perfect....patients can still have bone fractures in spite of getting bisphosphantes. The RATE of bone fracture is reduced overall by roughly 1/2 though.
#2. You have plain old low back pain unrelated to the myeloma
#3.You have developed a plasmacytoma
Sometimes myeloma can "escape" the bone marrow and cause tumors (in the bone and eslewhere). This can occur even when the myeloma appears to be well controlled by blood and urine tests.
Bottom line...call your hematologist/oncologist and have them check out your bone pain with xrays to be sure you know what is or is not causing the pain.
The best of luck to you in your triumphs and trevails with this difficult disease!
If you numbers are falling then it is much less likely that this is due to a return of your myeloma. Several possible causes come to mind:
#1. You have a new bone fracture in your lower back BUT your myeloma is in control
How can this happen ? It is very important to remember that there is no drug that works 100% of the time in 100% of patients. Bisphosphonates are not perfect....patients can still have bone fractures in spite of getting bisphosphantes. The RATE of bone fracture is reduced overall by roughly 1/2 though.
#2. You have plain old low back pain unrelated to the myeloma
#3.You have developed a plasmacytoma
Sometimes myeloma can "escape" the bone marrow and cause tumors (in the bone and eslewhere). This can occur even when the myeloma appears to be well controlled by blood and urine tests.
Bottom line...call your hematologist/oncologist and have them check out your bone pain with xrays to be sure you know what is or is not causing the pain.
The best of luck to you in your triumphs and trevails with this difficult disease!
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Needing Advice
Thank you all for your reply's. I will ask the Dr. about it the next time I see him. At this point it's just a "wait and see" and I'll continue taking my tylenol. I just figured it was the multiple myeloma because it is EXACTLY the same place and pain as before I was diagnosed.
I appreciate the input!
Gail
I appreciate the input!
Gail
Re: Needing Advice
Ahhhhhh.....
"Bisphosphonates are not perfect....patients can still have bone fractures in spite of getting bisphosphantes. The RATE of bone fracture is reduced overall by roughly 1/2 though. "
Thank you for that specificity Dr. Libby...good thing to know.
Here I was planning on going roller skating and zipping around that rink, sliding into corners, swinging on the end of a trio...all cause I was on bisphosphates...while chiming nanner, nanner, nanner, to cancer the wholetime as Huey Lewis blasted from the speakers...http://www.youtube.com/watch?v=N6uEMOeDZsA
Guess, I will just have to settle for watching Roller Derby instead.
darn
"Bisphosphonates are not perfect....patients can still have bone fractures in spite of getting bisphosphantes. The RATE of bone fracture is reduced overall by roughly 1/2 though. "
Thank you for that specificity Dr. Libby...good thing to know.
Here I was planning on going roller skating and zipping around that rink, sliding into corners, swinging on the end of a trio...all cause I was on bisphosphates...while chiming nanner, nanner, nanner, to cancer the wholetime as Huey Lewis blasted from the speakers...http://www.youtube.com/watch?v=N6uEMOeDZsA
Guess, I will just have to settle for watching Roller Derby instead.
darn
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
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