Gloriamazz wrote:....After Xmas going on Regorafenib. I need to know the positive and negative. How was your reaction? Did it shrink the tumors, were you sick and fatigued.
-------------------------ADVERSE REACTIONS -----------------------------
The most common adverse reactions (≥30%) are
- decreased appetite and food intake,
- hand-foot skin reaction (HFSR) [palmar-plantar erythrodysesthesia (PPE)],
- mucositis (mouth sores),
- weight loss,
- dysphonia (voice impairement, hoarseness)
Gloriamazz wrote:Hi Green Tea, ...
Most comments from caregivers were not positive with the drug. I would like first hand information about their results and about their side effects and if tumors shrunk. Length of time on the drug. I would like contact with people who are dealing with this drug now not 5 or 10 yrs ago.
Where do I post to reach it to these people taking Regorafenib, or is it not a drug that is not given much. With this drug are there other drugs I should inquire about. I joined this form for knowledge. I know nothing about cancer past the point I took 2 Chemos Oxilaplatin did not work.
Gloriamazz wrote:... I am going to look up alternatives to Stivarga .
Gloriamazz wrote:Hi Green Tea,
This Chemo drug Stivarga has nothing but bad reviews from people that were taking it. Hardly anyone was on it for long due to bad reactions.
I am very uncomfortable with Stivarga. I was on Irinotecan with FU5. and had a reaction and was taken off. I am not sure if it was the drug or panic attack.
I asked my oncologist yesterday about going back on it it yesterday and was told the fu5 did nothing with the Oxaliplatin
I am going to look up alternatives to Stivarga and check out my pathology report.
Are you a moderator?
Thank you for your help. You are a big help.
RECONSTRUCTED TIMELINE, DX TO PRESENT (DRAFT)
June 29, 2018, Colonoscopy
July 6, 2018 - DX Malignant Neoplasm of Anal Canal, 3cm adenocarcinoma, T2N0M0,
........................Initial staging: Stage 2A, no chemo or radiation recommended.
August 8, 2018 APR surgery (laparoscopic resection)
TX: No chemo for next 10 months, but antibiotics for infections, abscesses, etc., gall bladder surgery.
March 5, 2019. CT scan - 2 lung nodules noted: Possible remote recurrence in lungs
April 29, 2019 HyperDense Lesion 1.8 x 1.8 cm : Local recurrence in pelvic area, along sciatic nerve
May 25, 2019 Oncologist finally consulted
June 6, 2019 Port installed in preparation for chemo
<No chemo or radiation at all had been administered in the previous 10 months>
<Start FOLFOX regimen 6/10/2019 - first chemo started, 10 months after DX>
June 10, 2019 - Start FOLFOX, Round 1
July 8 , 2019 - Stopped FOLFOX after Round 2; change treatment now from chemo to pelvic radiation
< Start pelvic radiation regimen 7/22/2019>
July 22, 2019: 1st radiation of a total of 5 radiations
<Complete radiation regimen, when? mm/dd/2019 >
<Resume FOLFOX chemo regimen, when? mm/dd/2019 >
<Any change from FOLFOX to a different regimen? to FOLFIRI or FOLFIRINOX perhaps?
<how long on chemo since end of radiation until now? xx months.>
<Aborted FOLFOX regimen definitively on 12/14/2020: >
December 14, 2020 Oxaliplatin terminated after xx rounds. Not working, lung tumors grew and cluster of new ones appeared.
Taking break now over the holidays
<Resume chemo in January 2021 with change to a new, pill-based regimen: Stivarga, or Lonsurf >
January 2021 - ongoing chemo using pill drug
Gloriamazz wrote:Hi Green Tea,
Have Radiation Dates:
July 22, July 24, July 26, July 29 and July 31
Resumed chemo: 8/12/20 Back on Chemo
I have the genetic testing report. This system won’t let me send you the genetic report it is too large to type.
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