Advice/Insight Please - Wife Just Diagnosed

[Maddielolo]

Echoing others (go to Sloan & Kemeny given liver only disease) but understand your instinct to start folfox and stay local. Two things to consider. The sooner you start hai pump, the better success generally. Second, pretty much all other institutions don't have the surgeons and Kemeny that MSKCC (and the corresponding experience), and thus don't have the success that Kemeny does. As such, patients often hear from their local institutions (some of them the very top in country), that the pump is antiquated or they can explore that later after first line of treatment or other options. That isn't the best advice imo. I would at very least try to get a consult as soon as possible, even if she starts folfox.

[Maia]

Hello, welcome and sorry you need to be here.
You have received good advice and considerations. I would only add please ask your wife's doctor about her microsatellite status -- if she is MSS (stable) or MSI-High (instable). It's early in treatment but every Stage IV patient should know --a certein subset could receive immunotherapy upfront (to get to complete, maybe durable response, or to achieve resectability) instead of chemotherapy.

[Lily em]

Yes the spots in her lungs disappeared with chemo alone, no resection.

[kandj]

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?

My husband did have FOLFOX with Avastin. And his tumors did shrink with just that. But not enough for them to do the liver resection. And yes, systemic is the chemo through the port. It is an all over chemo (hence the side affects) vs the HAI pump, which is local chemo to the liver. It goes directly into the liver and stays there. They empty it after two weeks, and then it is a saline/heparin solution for 2 weeks. My husband had about 7 chemo rounds (5 with avastin, last 2 without, as you have to be avastin free for 6 weeks before surgery) before his initial colon resection and Pump placement. The liver tumors had shrunk about 30% but due to the amounts and their scattered locations, he needed far more than a 30% reduction. and by the 20% response rate, that was based on pathology of his removed sigmoid mass from his colon. The report said response rate was 20% (based on necrosis of the tissue). But the later response rate of the liver lesions they removed in May with the HAI pump and the systemic was 75-85%.


If you don't mind me being a bit blunt, I am going to put it out there. Too many stage 4 patients wait and see. For those with stage 4 metastases to the liver only, you have a curative chance. I know that oncologists like to say to do chemo first and then see. I get it, ours did too. But he was also quick to refer to a liver surgeon as he said resection was the only way to cure DH's cancer. The first Liver surgeon (at the top cancer hospital in the US mind you) told us that there was a less than 5% chance of DH's tumors all shrinking well enough on systemic chemo to get him to the point of liver resection. We left that appointment sad, deflated, and I left it pretty pissed off. So pissed off that I was looking up numbers and calling MSKCC before we left the hospital. I mean really, who the hell did that doctor think he was? A-hole. But that is a different story. The reality is, that the results MSKCC and Dr. Kemeny get are amazing. Yes, see if she responds to the chemo, but please, please, get a second opinion now while things are early. Chemo is rough on the whole body. Not only that, but the tumors get smart and eventually figure out how to grow while being assaulted. The only cure for cancer like this is to cut them out.

[Maia]

Only chiming in to say yes, agreed with kandj, resection or ablation when possible first, in this scenario!

[peanut_8]

junderhill, sorry about your wife diagnosis.

I wanted to add my 2 cents into the discussion. Pretty much the same as many of the previous posters, about recommending Dr. Kemeny at MSKCC. 80% of her patients that have been treated with the HAI pump are alive 5 years after treatment. Here's a link where this was discussed on Colon Talk. viewtopic.php?t=51430


There's no doubt that stage 4 CRC is a serious problem, and in my opinion, your best bet is for getting your wife treated at MKSCC.

Best Wishes,
peanut

[WriterGirl1969]

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

I think you'll find most of us feel the same way about this site. We don't hold anything back, we're free with information sharing, but the greatest gift this site gives (in my opinion) is hope. I was just diagnosed myself last year, and received the same warm welcome, uplifting information and surge of hope as you. God led me here. I'm sure He led you here too. I'm just glad to get the chance to pay it forward.

Glad to hear you're at a major center with a good team. I see others chiming in on Kemeny, so you have that info you can keep in your mind as you go through these next steps. Keep us posted on how things go, don't hesitate to ask any questions no matter how odd or silly they may feel, and remember to stop and breathe here and there. And I love your verse. As someone who was raised in a religious home, I am still discovering new and wonderful verses, especially from some fellow survivors.

Hugs and Prayers,
Tracy

[Marylandmaniac]

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.

[junderhill]

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.

Thank you all for your encouragement and advice. I've taken a little time away from this site while researching the genetic/molecular analysis in prep. Found out my wife is MSS and KRAS and BRAF wild. So 2/3 good news. We are meeting with the liver surgeon this Thursday (after MRI) to discuss his thoughts on resectability and setting expectations for what we need to achieve in order to proceed with surgery. I did push on our onc last week about the pump and he said they have some patients on it and could connect us with Dr. Kemeny. I think we have most of the data at this point to get a better second opinion. Just struggling as to where to go. I've been told Kemeny won't see anyone until they've finished their current chemo regimen. Is that accurate?

[Marylandmaniac]

Hmmm not sure about Dr. Kemeny as I never saw him. I wonder why he would want to wait. Hopefully your wife can have the liver resection or ablation. It sounds like you are gathering some good info which is half the battle. I just had round 11 of my chemo and looking forward to finishing round 12 and hopefully being done with this. Best wishes to you and your wife.

[Maddielolo]

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]

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!

[kandj]

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!

Dr. K would much rather see you early on. Less chance of damage to the liver. DH started chemo the third week of August 2015, we got an appt with Dr. K and the surgeon there the 3rd week of October. Started the process of setting up the appts./sending slides, reports, etc at the end of Sept.