Hey Tracy,
I hear you on both the 24-hour urine and the bone marrow biopsy. I think I'm tied with you with 8 bone marrow biopsies, but mine have been over a longer period - 7 years now since I was first diagnosed with MGUS.
I haul my pee jug into New York City monthly, and often ride the NYC subway during part of my trip to the clinic. Every time I can't help but have a small fantasy about someone stealing my backpack containing the pee jug and the huge, nasty surprise they would get.
Best wishes to you!
Mike
Forums
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: It's time for re-staging
Good luck with the restaging.
I only do the 24-hour urine test once per year at this point. We get all the food out of the fridge in the basement before I start. We sanitize it after. It is a good way to clean out the fridge. I also get a lot of exercise that day - up and down the stairs multiple times during the day.
MikeB - Once per month? Is that because of the clinical trial?
I only do the 24-hour urine test once per year at this point. We get all the food out of the fridge in the basement before I start. We sanitize it after. It is a good way to clean out the fridge. I also get a lot of exercise that day - up and down the stairs multiple times during the day.
MikeB - Once per month? Is that because of the clinical trial?
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Mark11
Re: It's time for re-staging
Mark11: It probably doesn't hurt to clean out your refrigerator and sanitize it at least once a year, but might I suggest that you try storing your urine collections in a small dedicated cooler filled with some ice packs? Doing so would probably save you the trouble of numerous trips to the basement during the day and night, too. Just a suggestion.
Re: It's time for re-staging
Woo hoo!
No serum M spike. Normal serum free light chains. Normal bone marrow biopsy - no abnormal plasma cells, less than 2%.
Normal creatinine, and other chemistries. Normal CBC, except for some WBC suppression, which is expected after 17 months of chemo!
Good PET CT. The radiologist noted a small amount of uptake at L1 spinous process, where I had a lesion all along. The amount of uptake is very small, and to the best of recollection, it's been like that all along, which would suggest it's okay (it's not a resurgence of the myeloma). But unfortunately the radiologist did not comment on a direct comparison between this PET and the last PET. So my oncologist has put in a formal request for a comparison. I've looked at both images, and I see no difference. Plus I feel good. And here's a really important one - L1 spinous process doesn't hurt.
I've emailed Dr. Laubach with all these results, and he'll get copies of course. Then we'll see what he says about maintenance therapy.
Whew!
Thanks for all your support, guys!
No serum M spike. Normal serum free light chains. Normal bone marrow biopsy - no abnormal plasma cells, less than 2%.
Normal creatinine, and other chemistries. Normal CBC, except for some WBC suppression, which is expected after 17 months of chemo!
Good PET CT. The radiologist noted a small amount of uptake at L1 spinous process, where I had a lesion all along. The amount of uptake is very small, and to the best of recollection, it's been like that all along, which would suggest it's okay (it's not a resurgence of the myeloma). But unfortunately the radiologist did not comment on a direct comparison between this PET and the last PET. So my oncologist has put in a formal request for a comparison. I've looked at both images, and I see no difference. Plus I feel good. And here's a really important one - L1 spinous process doesn't hurt.
I've emailed Dr. Laubach with all these results, and he'll get copies of course. Then we'll see what he says about maintenance therapy.
Whew!
Thanks for all your support, guys!
Last edited by Tracy J on Thu Feb 11, 2016 1:21 pm, edited 1 time in total.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: It's time for re-staging
Tracy,
This is wonderful news! I am so happy to hear these great results! Also great that you can see and interpret your own scans! Wishing you continued CR! Post what you do for maintenance. I'm sure you will. Go out and celebrate!!
This is wonderful news! I am so happy to hear these great results! Also great that you can see and interpret your own scans! Wishing you continued CR! Post what you do for maintenance. I'm sure you will. Go out and celebrate!!
Re: It's time for re-staging
Tracy,
That's absolutely great news on all fronts.
That's absolutely great news on all fronts.
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: It's time for re-staging
Fantastic!!
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: It's time for re-staging
That is great news!
Wishing you nothing but the best in your maintenance treatment!
Rhonda
Wishing you nothing but the best in your maintenance treatment!
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: It's time for re-staging
Tracy:
Wish you the best. I hope your test results helps your physician to make a decision to move you to maintenance dose.
Wish you the best. I hope your test results helps your physician to make a decision to move you to maintenance dose.
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: It's time for re-staging
I just heard back from Dr. Jacob Laubach at Dana Farber. My last regimen was cyclophosphamide (Cytoxan), pomalidomide (Pomalyst), and dex. So originally, Dr. Laubach proposed continuing them all, but at reduced dosing and / or frequency. However, I was reluctant to continue the Cytoxan, as I definitely noticed side effects from it. In addition, it can (rarely) cause secondary myelodysplastic syndrome (MDS), which is essentially bone marrow failure. The risk of MDS goes up the higher the cumulative dose of cyclophosphamide. It does not have a very good prognosis when it comes at the end of multiple myeloma and a long string of chemotherapy treatments.
So he responded by suggesting pomalidomide days 1-21, and dex at 8 or 12 mg weekly as maintenance therapy.
Yay!
So he responded by suggesting pomalidomide days 1-21, and dex at 8 or 12 mg weekly as maintenance therapy.
Yay!
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
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