I hope you get relief after this surgery! I think us in the AC/PMP community all thankful that you prefer to busy yourself with caring for others instead of letting your mind wander and go wild, because we all benefit greatly from your information and support!
Just starting my journey with Appendix Stage 4 Signet ring cancer. Started FOLFOX yesterday and then 2 days with the pump. Just found you channel and I love the posts. They so re helping me a lot. After chemo we may do HIPEC, doctor’s choice I guess. Stay strong.
I'm so glad that my videos are helping you. I had to do chemo before my first CRS and HIPEC. It did pave the way for that surgery. Chemo prior to CRS and HIPEC is very common for goblet cell and signet ring patients. Take care of yourself during this time.
Hey 👋 my mom has stage 4 pancreatic cancer today she got her port installed she’s loosing a lot of weight she’s about 89 pounds and she’s scheduled to take folfiri and I’m really scared
It is scary to watch a loved one go through this. I don't know what pancreatic cancer is like, but if she is that frail, please speak with her doctors about possibly putting her on TPN which is liquid IV nutrition. FOLFIRI is tough, but encourage her, enjoy time with her, make her laugh, and tell her she's strong.
Can I ask what immunotherapy you are on I also have goblet cell carcinoma of the appendix I’m at NED just now but I’m trying to be pro active if it comes back I had CRS/Hipec July 2023….pxxx
Of course. I'm an open book! When I had recurrence, they took a biopsy to make sure and also ran genomic testing. I was matched to Tecentriq immunotherapy. I'm the only appendix cancer patient that I can find that's been on it. Many are on Keytruda. I have a very high PD-L1 expression and that's why this treatment was recommended for me.
@@jvoetsch thankyou for replying to me I was going to ask my team to do the genomic testing on me if it comes back but I haven’t heard if anyone with appendix cancer on immunotherapy that’s why I’m so interested as my team have told me I would be going back on chemo if it comes back and I was so bloody ill on capox so immunotherapy would definitely be a better thing for me, I see your going for another Hipec how long did u get a ned and where did it return in? I hope everything goes well for u I know if I was to go for another I’d be so stressed as the recovery has been so difficult pxxx
@@pauladevaney-wq7iw my disease was extensive and went all the way through the entire diaphragm, all the way across. My specialist cauterized the entire surface after removing what he could there. He went above and beyond for me, and did do HIPEC after CRS. We did expect it to come back on the diaphragm. It did. Also had spread to my liver, but it has not changed. I was never NED, due to the diaphragm, but had no visible disease on scans for 9 months post CRS and HIPEC. That was when we did the biopsy on the spot that appeared in my liver, then genomic testing. Then I did immunotherapy for about a year and a half. I've been on watch for a year now, with no visible changes. I do have a ventral hernia that is causing problems though, so that is why I'm going in for my second CRS and HIPEC. At minimum, my hernia will be repaired and my quality of life will be the most important thing.
@@jvoetsch mines was on my diaphragm to but it hadn’t gone right thru it was at surface level which got scraped off during CRS…..I had a hysterectomy, my peritoneal and omentum removed appendix right side of bowel and part of my rectum removed plus 4lbs of cancer scraped out of the left hand side of my pelvis before the hot chemo…it was brutal as u well know, has the immunotherapy been working for u? How have u found it? Quality of life is definitely number one n I hope n pray you get that with your second Hipec 🙏…il keep following your journey to see how your getting on 💖💖pxxx
@@pauladevaney-wq7iw When I had recurrence, a biopsy was done to the tumor in my liver. It was confirmed appendiceal origin. They used that biopsy tissue to run genomic testing, which put me in a database but also matched me to the specific immunotherapy drug that I am on due to a high PD-L1 expression, vs the typical mutations. 2nd crs and hipec is coming up in April ;)
I hope you get relief after this surgery! I think us in the AC/PMP community all thankful that you prefer to busy yourself with caring for others instead of letting your mind wander and go wild, because we all benefit greatly from your information and support!
Thank you for sharing your update. Your squad is here❣️
Thank you for being candid and sharing with us. I will be thinking of you intensely on CRS/HIPEC day. Sending much love from here,
Live life to the fullest ❤ You are amazing!
I hear ya with the no appetite and no energy. It is so hard to be motivated and put anything in your mouth. Best of luck. Paul in Perth.
Hi Paul! Hope you're feeling better each day
Just starting my journey with Appendix Stage 4 Signet ring cancer. Started FOLFOX yesterday and then 2 days with the pump. Just found you channel and I love the posts. They so re helping me a lot. After chemo we may do HIPEC, doctor’s choice I guess. Stay strong.
I'm so glad that my videos are helping you. I had to do chemo before my first CRS and HIPEC. It did pave the way for that surgery. Chemo prior to CRS and HIPEC is very common for goblet cell and signet ring patients. Take care of yourself during this time.
Hey 👋 my mom has stage 4 pancreatic cancer today she got her port installed she’s loosing a lot of weight she’s about 89 pounds and she’s scheduled to take folfiri and I’m really scared
It is scary to watch a loved one go through this. I don't know what pancreatic cancer is like, but if she is that frail, please speak with her doctors about possibly putting her on TPN which is liquid IV nutrition. FOLFIRI is tough, but encourage her, enjoy time with her, make her laugh, and tell her she's strong.
Thanks so much
Can I ask what immunotherapy you are on I also have goblet cell carcinoma of the appendix I’m at NED just now but I’m trying to be pro active if it comes back I had CRS/Hipec July 2023….pxxx
Of course. I'm an open book! When I had recurrence, they took a biopsy to make sure and also ran genomic testing. I was matched to Tecentriq immunotherapy. I'm the only appendix cancer patient that I can find that's been on it. Many are on Keytruda. I have a very high PD-L1 expression and that's why this treatment was recommended for me.
@@jvoetsch thankyou for replying to me I was going to ask my team to do the genomic testing on me if it comes back but I haven’t heard if anyone with appendix cancer on immunotherapy that’s why I’m so interested as my team have told me I would be going back on chemo if it comes back and I was so bloody ill on capox so immunotherapy would definitely be a better thing for me, I see your going for another Hipec how long did u get a ned and where did it return in? I hope everything goes well for u I know if I was to go for another I’d be so stressed as the recovery has been so difficult pxxx
@@pauladevaney-wq7iw my disease was extensive and went all the way through the entire diaphragm, all the way across. My specialist cauterized the entire surface after removing what he could there. He went above and beyond for me, and did do HIPEC after CRS. We did expect it to come back on the diaphragm. It did. Also had spread to my liver, but it has not changed. I was never NED, due to the diaphragm, but had no visible disease on scans for 9 months post CRS and HIPEC. That was when we did the biopsy on the spot that appeared in my liver, then genomic testing. Then I did immunotherapy for about a year and a half. I've been on watch for a year now, with no visible changes. I do have a ventral hernia that is causing problems though, so that is why I'm going in for my second CRS and HIPEC. At minimum, my hernia will be repaired and my quality of life will be the most important thing.
@@jvoetsch mines was on my diaphragm to but it hadn’t gone right thru it was at surface level which got scraped off during CRS…..I had a hysterectomy, my peritoneal and omentum removed appendix right side of bowel and part of my rectum removed plus 4lbs of cancer scraped out of the left hand side of my pelvis before the hot chemo…it was brutal as u well know, has the immunotherapy been working for u? How have u found it? Quality of life is definitely number one n I hope n pray you get that with your second Hipec 🙏…il keep following your journey to see how your getting on 💖💖pxxx
@@pauladevaney-wq7iw When I had recurrence, a biopsy was done to the tumor in my liver. It was confirmed appendiceal origin. They used that biopsy tissue to run genomic testing, which put me in a database but also matched me to the specific immunotherapy drug that I am on due to a high PD-L1 expression, vs the typical mutations. 2nd crs and hipec is coming up in April ;)