Four months in , scared, confused and overwhelmed about how to proceed

[SarahS]

Hi ladies

A little late to the paddle party, husband and I took a much needed break and went to the beach this week. He's off to his infusion right now, last CEA was down to 14, it was 114 pre surgery and aside from the chemo side effects he is still feeling pretty good.
Like you also, our oncologist has not suggested or even mentioned any other treatment options except tor chemo.
We decided to contact MSK independently and have an appointment with Dr Segal next month. I am excited and have some real hope now as I believe immunotherapy is the way forward.
I hope you all are keeping sane, I'd be happy to share a boat with any of you any time

[mhf1986]

Howdy All, It's "next month" so I thought I'd say hello and best wishes for everyone's ongoing plans. DH almost didn't get treatment today because his platelet count was low and there was a 99.5 temp yesterday. But Dr. decided it was fine as temp down to normal this morning. We are home and DH had a nice nap. He went to work yesterday on the subway and I think that tired him out because he hasn't done that since before diagnosis!

CT Scan is May 12 and then we make decisions. DH has become a lot more involved in asking questions/doing research and such but we are still very uncertain about our current guy as chemo seems to be his only thing. DH wants someone to talk more to so I'm investigating Georgetown and MSK. Liver numbers look good and CEA was 11.3 two weeks ago.

Hugs, Melissa

[inorganic8]

Hello friends,

Melissa, I'm glad to hear you are hanging in there. It must be terrifying to think DH will have to miss a treatment. We haven't faced that yet, but I know it's only a matter of time for everyone. I've decided to take Joe to Wake Forrest for another opinion on HIPEC. He's not particularly happy about it, he wants to just do what the local docs say. I'm glad to your your hubs is more willing to dig into the research. I hope that makes things easier for you. (For the record, I sympathize with DH. I know he wants to spend some time *not* thinking about cancer.)

Take care, everyone. You are all in my thoughts and prayers.

[LPL]

Hi inorganic8,

Best of luck getting a 2nd opinion on HIPEC for your DH.
Hoping that your hubby will get the feeling that the more info/opinions the better.
There are of course benefits with 'staying local' (the 'best', the experts, were unfortunately not local for my DH)
But If travelling is needed for getting to Doctors and to treatment he believe is best, that must feel important to him!?!
Kind regards /LPL

[Lee]

Hi Sarah,

Glad you're going to MSK for another opinion. It truly is the #1 hospital out there.

Good luck to all of those in the trenches,

Thinking of you all,

Lee

[SarahS]

Thank you Lee.

It's just a few weeks now until we go to MSK, I am both excited and terrified

Melissa, just wanted to let you know that we had to miss a treatment due to low white blood cell counts, but even though we did, nothing terrible happened ( we actually went on a sneaky vacation to Florida) and his CEA still dropped at the next check, so don't be too stressed if you have to miss one and good luck for the 12th

Inorganic, good luck with your HIPEC consultation

Hugs and best wishes to everyone