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Wife DX with T2 Micropapillary Cancer…
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Thanks for the updates.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait. -
Quick update. My wife indeed had another round of radiation for the rib pain. They also targeted the other bump on her skull. There were 6 appointments (1 to prepare and then another 5 appointments for the radiation treatments).
We have made 62 treatments to MD Anderson.So far the continued pain has been manageable with tramadol. Next appointment is with the oncologist in a week for her second Keytruda treatment.
Will update as get more information.
Thanks,
James
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We will keep our fingers crossed, James. These new immunotherapy drugs can have amazing results.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator -
Met with our oncologist today. She is very concerned with how rapid the second bump on the skull has grown. She decided it is best to begin immunotherapy immediately, so my wife received the first treatment of Pembrolizumab this afternoon. The treatment took less than an hour. She will have a treatment every three weeks. The efficacy of the treatments will be analyzed several weeks after her third installment. Chemotherapy was not prescribed because it was ineffective the first go around before RC, as well as the fact that my wife did not tolerate it very well.
She may have additional radiation treatments for the second bump on her skull as well as her ribs as she is experiencing a lot of rib pain at night. The radiation treatment on her spine seems to have reduced the pain at that location somewhat. She is currently taking Tramadol for the pain.
Okay that should be it for the next few weeks. Will update then unless there are other developments.
Thanks,
James
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James, thank you for documenting her journey. Hope it may give guidance to others on the same journey.
Hope the news is good when you meet with the oncologist
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator -
Just want to continue to document the journey.
My wife completed the radiation on her spine and skull. It was 5 days of treatment with the treatment each day lasting approximately 50 minutes. These treatments were to reduce the pain.
Next meeting will be after Thanksgiving with her primary oncologist. Will see what the plan is then.
Thanks
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James,
I am sorry about the report I have read. The good news is M.D. Anderson is simply one of the best.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait. -
Hello All,
I want to continue to update this story in hopes it may be useful to others in the future.
As a reminder my wife was diagnosed in August 2019 with MIBC Stage 2 rare plasmacytoid variant bladder cancer. She underwent 4 treatments of chemotherapy that were not effective. She received a radical cystectomy in January 2020 where the pathology stage was upgraded to 3a with no lymph node involvement and clear margins. She has since had clean scans at 3 and 6 months.
It has now been 9 months since her surgery. Recently my wife had a case of bronchitis so we went to the ER. She mentioned to the doctor that she had a bump on her head. They took a CT scan of her head and discovered that there was cancer in her skull. We just completed a biopsy of her skull as well as a total body bone scan and the 9 month CT scan of her neck to her pelvis. The initial pathology of the biopsy from her head indicated that it is most likely the bladder cancer. The bone scan also found spots on her her ribs, her spine and femur. Oddly enough the CT scan discovered no cancer anywhere else. They are comparing the tissue from the cystectomy to the biopsy sample to verify that indeed the bone cancer originated in the bladder cancer.
The oncologist said this will be the first case she has seen that the initial site of bladder cancer metastasis is in the bones. She was very surprised that the CT scan was clean. Things move very fast at MD Anderson. We met with the radiation oncologist today and had the radiation simulation. She will have radiation treatment next week to the skull and the spot on her spine. Will continue with radiation to the other spots after that.
I am sorry that I can not report a more positive outcome at this time. My wife has a good outlook and is ready for the upcoming battle. I will continue to update this thread on regular intervals as we continue this journey.
Thanks to all!
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Thanks for the updates and good report. You’ll never know how many people you are helping in this fight including me! It is all good.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait. -
That is GREAT news, James! Congratulations to your wife who, I know, has not had an easy time getting to where she is today and Congratulations to her magnificent caregiver!!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator -
JamesF
Once again, thank you for posting the success story. It is good to read what is possible.
Happy for both of you.Best,
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021 -
Just a quick update since it has been a while.
As a reminder my wife had plasmacytoid bladder cancer. Chemo was ineffective and she was eventually staged at 3a w no lymph node involvement at the time of RC/IC.
She just had her 6 month checkup today. No sign of cancer. She is accustomed to her new normal. Every day she is grateful to still be cancer free. Next checkup will be at the 9 month mark in November.
I will update post then.
Thanks
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Wow. If my arithmetic is correct this about 5 months post. Congrats to both of you! Lot’s of life yet to live!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait. -
Just quick update since it has been a while.
My wife is now able to change bag by herself. She is able to drive over 6 hours to see her family. She has become accustomed to her new normal. Every day she is grateful to still be cancer free. Next checkup is the 6 month scan on Aug 13/14.
I will update post then.
Thanks
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Wonderful news!
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