junderhill wrote:Thanks so much for taking the time to respond. This has been such an encouragement to us today. I know that not everyone will respond the same way and we're far from out of the woods, but this gives us a lot of hope. Our onc did mention the possibility of a pump amongst other treatments but said we want to see how everything responds to this initial treatment. I did clarify that we are starting with FOLFOX + Avastin so I'm hoping that can get us going in the right direction. I'm not going to book our flight to NYC just yet, but if I feel like they're not being aggressive enough and waiving the white flag, we will be there in a heartbeat. What chemo cocktail did they initially start your husband on? When you say systemic, you're just talking standard chemo via port, right? I'm still learning all this. Can you help me understand the response rate you mentioned? Do you mean that only 20% of his mets responded (either shrunk or stabilized) on systemic and that via the pump the vast majority met the criteria or what exactly?
junderhill wrote:You all, I am so glad I found this site. This has been the absolute best day since we received our diagnosis. Your all's stories are so encouraging and uplifting. The road is still going to be tough, but hearing that it's not just endless darkness and that there could very well be some light there is awesome. Lily em, thanks so much for sharing man. Praise God! I'm so glad to hear your wife is responding well. What about her lung mets? Did chemo knock those out completely? Any resect there?
Again, kandj, Kara, Tracy, Amy, Nelbel - THANK YOU!!!
"Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the Lord will be your rear guard. Then you will call, and the Lord will answer; you will cry for help, and he will say: Here am I." Isaiah 58:8-9b
Marylandmaniac wrote:You sound like a wonderful and caring husband. I love that you are on here researching what you can. You have gotten a lot of great advice on here already. This site is amazing and such a good resource.
My advice is to start a CaringBridge site so that you can keep your family and friends updated. The calls and texts can get exhausting after a while but it is nice that so many care. I started a CaringBridge site and so many people have told me how happy they are that they can get updates.
My other advice is to talk to your oncologist and nurses about ways to help with side effects. I saw a nutritionist at my center. I would take L-glutamine the day of infusion and for 5 days after. It is supposed to help with some of the neuropathy. I also took magnesium supplements because she mentioned that platins drain the body of magnesium. I also took 6K of vitamin D. I also took milk thistle at night to help liver function. The other thing I took from reading recommendations on here is Cimetidine (Tagamet) which is a heart burn med that there has been research that it helps prevent mets. I also took Turkey Tail mushroom which is a psk and good for immune system. One thing my nutritionist said is when buying supplements to look for MSP or USP labels on them. Supplements are not regulated by FDA so the labels give some reassurance that you are actually getting what you pay for. My side effects have not been too bad. I do have some slight numbness in my finger tips and feet but I didn't get that until after my surgery and 6 rounds of FOLFOX prior to the surgery.
Maddielolo wrote:Re: Kemeny that is not accurate. She will see you during chemo to evaluate and potentially schedule surgery, but prefers to do the pump earlier than later always; she has data that suggests better outcomes the earlier one does the pump. So her ideal time to implant pump and resect primary is before starting systemic, so then systemic is stated at same time as hai chemo. Anyway, worth reaching out sooner than later and let her office dictate timing.
junderhill wrote:Maddielolo wrote:Re: Kemeny that is not accurate. She will see you during chemo to evaluate and potentially schedule surgery, but prefers to do the pump earlier than later always; she has data that suggests better outcomes the earlier one does the pump. So her ideal time to implant pump and resect primary is before starting systemic, so then systemic is stated at same time as hai chemo. Anyway, worth reaching out sooner than later and let her office dictate timing.
Perfect. Thank you for the help and insight!
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