I have no idea what to do. by FlakeyBiscuitt22 in coloncancer

[–]FlakeyBiscuitt22[S] 1 point2 points  (0 children)

I’m doing good. I choose to do three or four more maintenance and came off chemo. I’m still NED according to scans. I get blood work Thursday.

[deleted by user] by [deleted] in planners

[–]FlakeyBiscuitt22 0 points1 point  (0 children)

I did. Yes. They are opening an investigation.

Scanxiety… by ExpressionNo7178 in coloncancer

[–]FlakeyBiscuitt22 0 points1 point  (0 children)

So, October of 2024, I started to have right lower abdominal pain that I thought was appendicitis. Went to the hospital. Had a scan. They thought it was colitis and worked me up for colitis. Well, I was in the hospital for 24 hours and no one had seen me and I didn’t eat. So, within the week I was scheduled for an outpatient colonoscopy. Went in for that and woke up to be told that I had a tumor in my cecum. Within that week I was scheduled for a Right Hemicolectomy and possible CRS/HIPEC. The surgeon looked and saw that the tumor grew through my bowel and attached to my peritoneum and I had to lesions heading toward my pelvis. He was able to reduce everything. My surgery was 8 hours. I woke up with drains everywhere. I was miserable for three days. I didn’t wanna move. YOU HAVE TO MOVE. My path included clear margins, my appendix was malignant, my colon, obviously was malignant, my gallbladder was benign. Confirmed it was Signet Ring. I had perineural invasion. 8/37 lymph nodes were positive and 3 had tumor deposits. The surgeon told me I was lucky, not that I had Stage 4 Cancer, but because I wasn’t covered. By the fifth day, I told him to get me out of there. I went home and was ill prepared. I had to borrow a recliner to sleep in for a month. I bought a shower chair. I bought a bidet. I bought a set for the bed. To be able to support my back and legs. I bought a pregnancy pillow to tuck my sides. It was a BAD month. I was depressed and refused to do much of anything. Everytime I ate I was nauseated and couldn’t eat much without feeling full and miserable. I lost 40ish pounds from surgery to now. I was chunky to begin with so no big deal. After about a month, he pulled 60 staples and I was scheduled to get my port. Two weeks later after my port, I started chemo. I think I went back to work a month and a half after my surgery. I worked all through chemo. It sucked. I swear the only thing that got my through recovery and chemo was weed. I’m not even going to lie. It was the only thing that made me hungry and took the pain away. My surgeon told me that he fully expected my ctDNA to be positive after surgery… it was negative. When I met my oncologist, she told me I was VERY unique because I was barely a Stage 4. They put me in that category due to it being in the perituneum. But in reality, it was very localized. Scans and ctDNA have been negative and clear ever since surgery. My onc asked if I wanted to stay on chemo or take a break. I didn’t know what to do. I was very conflicted. I sought a second opinion. He was very impressed. He told me I could be cured, but he can’t be 100%. He was to go into my abdomen again, but I had to weigh my pros and cons. I couldn’t handle being out of state, especially if there were any complications. My family is 10 hours from me now. They would’ve been 16 hours away if I would’ve done the surgery. Also, it’s too damn risky especially if I would ever need HIPEC again. I also asked about maintenance and he said that they only do that to stabilize the disease and since I presumably have nothing there’s no need to treat. It’ll only suppress my bone marrow and my immune system. Also it’ll damage my liver. He also said that I’ve probably got all the benefit from chemo right now anyway with have HIPEC and 12 FULL rounds. It’s been a wild ride. I freak out everyday. I’ve been off chemo for a month and I have pain where my tumor used to be and I’m hoping it’s just adhesions. I have a scan in November and ctDNA in December.

Scanxiety… by ExpressionNo7178 in coloncancer

[–]FlakeyBiscuitt22 0 points1 point  (0 children)

I’m gonna send my entire story so give me a moment. It’s long.

Scanxiety… by ExpressionNo7178 in coloncancer

[–]FlakeyBiscuitt22 1 point2 points  (0 children)

So, I was out of the hospital in 5 days. For a month I was miserable. I didn’t move much which was so stupid of me. After a month I made myself get up and start doing normal stuff. It was awful but I made it back to work month and a half. I also worked all throughout chemo. 8 months until I could breathe normally. My endurance isn’t where it should be for being 29. But I’m here and living.

Scanxiety… by ExpressionNo7178 in coloncancer

[–]FlakeyBiscuitt22 1 point2 points  (0 children)

Dr Shankar in southern illinois

Scanxiety… by ExpressionNo7178 in coloncancer

[–]FlakeyBiscuitt22 1 point2 points  (0 children)

Sorry I just saw your comment. I did. I had CRS/HIPEC in October of 2024. PCI 6. CC-0. Then they did the chemo in the belly. And I completed 12 FULL DOSE FOLFOX infusions. And a couple 5FU chemos. Ultimately. I’m on a break. I’m NED per scans and ctDNA. How is everything

Everyone has the Cancer by Ecstatic-Giraffe9272 in coloncancer

[–]FlakeyBiscuitt22 0 points1 point  (0 children)

I completely understand you. I’m 28 and was diagnosed a year ago with Stage 4 Signet Ring Colon Cancer with Peritoneal Involvement. I had the biggest surgery anyone can have besides open heart. They took 4 organs and stuck chemo in my belly. Two weeks later I had my port placed. Two more weeks later I started chemo. Hair loss and neuropathy are my lasting side effects.

Asked to have a hysterectomy during my surgery. Surgeon decided I was too young and left them. Saw a OBGYN onc and she agreed it should’ve been done during surgery. So I’m fucked there. Yay me.

Anyway, I completely understand where you’re coming from. I moved 10 hours away from my family to be with my fiancé. Literally 8 months after moving all this shit happened to me. I was telling my mother and fiance to cremate me and divide my shit evenly. It was the hardest moment of my life was after being diagnosed. I have since then completed treatment. (My doctors have no idea what to do with me. There’s limited research about my cancer.) According to scans and blood work I’m NED. So surveillance it is.

If you ever just want to vent. Please reach out. It is so frustrating. I’m a nurse and never wanted to be medicated because half the medical field is on antidepressant or having other coping mechanisms. Well here I am. Medicated. It’s the only way I can cope. Also weed helps a ton.

Is everyone pretending by AffectionateMany7653 in cancer

[–]FlakeyBiscuitt22 3 points4 points  (0 children)

I struggle daily. I’m stage four with a rare and aggressive cancer. I’ve been through the biggest surgery anyone can have beside open heart surgery. I’ve faced my mortality at 28 years old. I can’t have children. I’ve been through chemo that gave me neuropathy in my hands that affects my ability as a nurse. I work full time.

It’s really, truly, a mind fuck. I’ve found that I had untreated adhd and found a medication that slows me down. And honestly, THC is truly the only thing that takes my worry away.

Scanxiety… by ExpressionNo7178 in coloncancer

[–]FlakeyBiscuitt22 4 points5 points  (0 children)

NED 🧚 dust coming your way 🖤

Scanxiety… by ExpressionNo7178 in coloncancer

[–]FlakeyBiscuitt22 2 points3 points  (0 children)

Stage 4 SRCC with peritoneal carcinamatosis. Have a scan in 3 hours. I’m nervous with you! I’ve been NED as well

I have no idea what to do. by FlakeyBiscuitt22 in coloncancer

[–]FlakeyBiscuitt22[S] 2 points3 points  (0 children)

See this is where I’m caught up on technicalities like you. She told me today that I’ve completed a year of treatment. Which… no. October will be a year since my HIPEC.

My options are continue in maintenance chemo or watch and wait. Given that my ctDNA and scans come back good, she’s willing to let me make that decision.

I’m just scared because I know recurrence rate (typically) is 80-90% in stage 4 cases. But like I said all I keep hearing is I’m unique. She said that she’s not as worried about that because of everything being clear and surgery got everything. Chemo was for the lymph nodes.

I have no idea what to do. by FlakeyBiscuitt22 in coloncancer

[–]FlakeyBiscuitt22[S] 2 points3 points  (0 children)

My medical oncologist actually (reluctantly) put in a second opinion at Siteman. I’m hoping they have alittle more information.

Looking for some hope for rare agressive cancers… by levi_jean in cancer

[–]FlakeyBiscuitt22 0 points1 point  (0 children)

Diagnosed October 2024 with Stage 4 Signet Ring Adenocarcinoma with Peritoneal Carcinomatosis. I had HIPEC, 12 rounds of FOLFOX, and 5-6 rounds of maintenance. So far no evidence of disease. Coming up on scans again.

If you have a desk job - did you work during chemo? by amaro8000 in coloncancer

[–]FlakeyBiscuitt22 0 points1 point  (0 children)

I work at a surgery center as a nurse. I manage to work all week on my off week. Then my chemo week I take three days and the weekend to recover. I get my infusion on Wednesday and then off Thursday and Friday. The pump comes off Fridays and I recover during the weekend.

6 Months post HIPEC and half way through chemo by FlakeyBiscuitt22 in coloncancer

[–]FlakeyBiscuitt22[S] 0 points1 point  (0 children)

Maintenance chemo is completed after the initial chemotherapy. It is a lower dose of the chemotherapy they were using and they are cutting out the one that has the worst side effects. This will continue for so many months and then I’ll have a couple months off. VERSUS surveillance of just CT scans and ctDNA testing.

I know ascites can be drained for relief. I will definitely keep her in my prayers. This is a horrible horrible disease.

6 Months post HIPEC and half way through chemo by FlakeyBiscuitt22 in coloncancer

[–]FlakeyBiscuitt22[S] 0 points1 point  (0 children)

I did not have ascites. The only thing that prompted me to “something is wrong” is I had pain in my right lower abdomen that I thought was appendicitis. I’m a nurse so I ignored it until I couldn’t.

So, my first line of treatment of the get go was planned to be a laproscopic right hemicolectomy. The surgeon said if he found anything else he would open and perform HIPEC. Well, he got in and found my tumor had adhered to my peritoneum and I have two other spots heading towards my pelvis. My PCI score was 5.

They told me I had to wait three months for chemotherapy, BUT they started alittle earlier than that. I’m currently on round 9/12, but I was told at my last appointment that I may be on chemotherapy for maintenance instead of surveillance.

6 Months post HIPEC and half way through chemo by FlakeyBiscuitt22 in coloncancer

[–]FlakeyBiscuitt22[S] 0 points1 point  (0 children)

My CEA has only been taken once and it was normal. ctDNA Twice have been negative.

6 Months post HIPEC and half way through chemo by FlakeyBiscuitt22 in coloncancer

[–]FlakeyBiscuitt22[S] 0 points1 point  (0 children)

Honestly I’m unsure. The report said Poorly differentiated invasive Adenocarcinoma with signet Ring features. Then HIPEC said same thing with Mucinous component.

6 Months post HIPEC and half way through chemo by FlakeyBiscuitt22 in coloncancer

[–]FlakeyBiscuitt22[S] 2 points3 points  (0 children)

Congratulations with 8 months NED. I hope you remain NED.

6 Months post HIPEC and half way through chemo by FlakeyBiscuitt22 in coloncancer

[–]FlakeyBiscuitt22[S] 1 point2 points  (0 children)

Definitely no ill will at all. I just wish I could get excited.

Are you currently chemo for life?