How much hair should I expect to lose on Folfiri?

You just gave me so much hope! I am going mention those others to my drs because they are talking about adding Panitumumab because they found a KRAS G13D in my cancer testing for other cancers attached that they could possibly give alternative treatment for. I couldn’t do the folfox again because I am allergic to the Oxaliplatin. I am going to google what your added ones are for and see if they are something I can benefit from when I see my Dr Friday! I got the mouth sores… ugh not the nose! I hope they stay away! I pray for continued health for you! Do you follow a special diet? I struggle with getting water in… 🥰🤪

@myjiggers1 I’m so glad I could give you some treatment ideas to look into 🌺🙏 Please do let us know how you go.
https://www.cancerresearchuk.org/about-cancer/treatment/drugs/bevacizumab
Yes I also had trouble getting my hydration in because I don’t like water even with cordial added! I drank a lot of zero sugar Powerade and Gatorade energy drinks, diet ginger beer and ate lots of icey poles. My fridge and freezer were full of these things and I never got tired of them.

My diet was based around fish, chicken, veggies (such as spinach, broccoli, peas, cauliflower, potatoes) and fruits (such as tomatoes, bananas, grapes, apples, blueberries) plus yoghurt, humus etc. I found I ate mainly bananas and grapes sometimes humus and crackers while the 46 hour take home bottle was on then a huge bowl of laksa with rice noodles and prawns as soon as the bottle came off. I also liked my main meals mashed up because of the mouth sores!!

Please don’t hesitate to ask me anything. Best wishes 🙏🙏🌺🌺

Oh! After you wrote bevacizumab I realized that is what I will be getting! I had to go check my Drs notes. The other I listed I can’t have because it won’t work like they hoped. How did you handle that medication? I am trying to work thru it all as long as I can. I won’t get that bev treatment until we determine if they will do radiation on my cuff. The bleeding subsided after the first chemo treatment so I was excited about that and might not need it. I started to get some discharge again though yesterday. I hope it goes away again. How did they know it was your appendix that had it first? What does the HIPEC do? They saw some in my abdominal wall that I am hoping was just inflammation but I get tummy pains there so I am not confident in that hope. Hopefully folfiri will kick its butt! No pun intended lol. Did you ever get nerve pain down your legs by chance? Its something new and could be a pinched nerve. I am going to stock up on icees! Great idea! Thank you so much! What is laska?

@myjiggers1 It sounds like you’re going to do my treatment, but I didn’t have radiation. My initial treatment was major debulking surgery before 6 months of fortnightly treatments of Folfiri and Avastin with the 46 hour take home bottle. The Avastin had pretty much the same side effects as the Folfiri so nothing extra to stress about IF you tolerate it and aren’t allergic to it 👍 I tolerated it well from the start. Some people can’t have it. I hope you can 🙏

Nerve pain may be your oxaliplatin. I chose Folfiri as my first line to avoid oxaliplatin if I could as neuropathy is its major side effect. I’d rather lose hair and have diarrhoea. Chat to your doctor as they can help alleviate that neuropathy pain 🌺

It took my hospital peer group review team just inside the 3 month treatment start window after surgery to make a call on what my primary was after consulting externally as well. It was difficult waiting, but in my case worth the wait ro get the right treatment plan from the start.

I had HIPEC with cytoreductive surgery and a peritonectomy after my 6 months as I qualified for it. Essentially it addresses cancer within the abdominal area. They call it the mother of all surgeries (MOAS) and I’d do it again. My body handled it well. I’ve come through remarkably unscathed other than looking like a shark has ravaged my stomach and needing to watch my fibre and hydration to avoid constipation due to adhesions in my colon resection area. I was lucky and didn’t need a temporary or permanent bag.
https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/hipec-surgery-what-you-need-to-know
I had that on 9 May 2022 and have been NED since. I get bloods and PET-CT scans and cancer blood marker tests regularly. Initially 3 monthly then 4 monthly and my oncologist told me today I can now do scans 6 monthly but bloods (the canary in the coal mine) 3 monthly 🙌

I did get some abdominal pain but with me it was the Folfiri doing its stuff. It does attack the digestive system hence the diarrhoea. I do still get phantom abdominal pain from the various surgeries I’ve had and adhesions.

I love laksa (its spice didn’t hurt my mouth) - but you just need to choose a psychological treat that you love and can handle which is high in calories and nutrition when your bottle comes off!
https://thewoksoflife.com/laksa/
Good luck! 🙏🙏🌺🌺

Lets see I got diagnosed after finding I had uterine cancer from a hysterectomy we did to prevent cancer when they found pre cervical. I was so anemic they were just doing due diligence and sent for a colonoscopy and endoscopy to e see where I was losing blood. We got hit with a large bleeding mass in the right side right near the beginning. So they did surgery to remove that and took out 42 lymph nodes of which 8 were infected. And went right to folfox. I only tolerated 2 of the oxaliplatins however. I was stage 3c then. That ended in February. Started bleeding in November and found the mass in my cuff. I was soooo hoping for vaginal cuff tear or stage 1 again of the endometrial. But it came back colon. They hoped I would make it longer. Hoping for better results with folfiri!

@myjiggers1 Oh my goodness you have been on a roller coaster ❤️‍🩹 Praying that Folfiri works well for you as it did for me, and that you can add the Avastin 🙏 Please keep us posted.