When does the ride stop?

[Mohrfamily]

I got a call about DH from Cleveland Clinic, the hospital we are leaving in the dust for MSK. His original colon specialist submitted his case to the surgical board and acknowledge his liver improvement but still to much for surgery.

NOW after everyone putting in their 2 cents, they think that there's an issue in the lymph nodes around the stomach in which case MSK would not help and suggested another PET scan and biopsy.

I want to cry I want to scream at CC because I just feel like they are filled with negativity and continuous No Hope measures. I looked my husband in the eye yesterday after making reservations for a hotel for the MSK trip in a couple weeks and I told him he was going to be fine. I don't want to lose my husband.

[mpbser]

I am so sorry to read this. I love my husband more than the world as well.

Has he had a PET scan before?

[stu]

Hi
Sorry to hear how upset you are . Is it MSK that said they would not be able help if stomach nodes involved?
What I have learnt over the years is to wait and see what the other hospital has to say . They may just be making sure they have been clinically thorough when handing over the file to another professional than any real concern .
Take care,
Stu

[Mohrfamily]

I am so sorry to read this. I love my husband more than the world as well.

Has he had a PET scan before?

He had a PET in the spring of 2018 and nothing was noted other than the colon and liver.

[Mohrfamily]

Hi
Sorry to hear how upset you are . Is it MSK that said they would not be able help if stomach nodes involved?

We go to MSK for our first apt the 30th. Cleveland Clinic called to tell us that based on a bunch of people looking at everything who don't know us or what is going on.

[stu]

Hi ,

I would not draw any conclusions from that at the moment and go with an open mind to see what options open up .
So if MSK has accepted your husband for a consultation I am assuming they have already reviewed some scans themselves ??? Would that be right ??
They may not be too concerned .
Stu

[Mohrfamily]

Hi ,
So if MSK has accepted your husband for a consultation I am assuming they have already reviewed some scans themselves ??? Would that be right ??
They may not be too concerned .
Stu

They've not seen the scans but have all the reports we're taking his first scans and most recent scans with us to the appointment.

[ginabeewell]

I had a really negative consult at Cleveland Clinic too and have heard nothing but optimism from those who have been to MSK. We are heading there next week.

I had to meet with four oncologists before I met one I didn't have to convince I was going to live. The attitude of the others (and more than one verbalized it) was "we are going to try to keep you alive for two years and hope for better medical science by then."

Sorry but I am a mom of young kids so I don't want to talk to you about two years, jerks!

I guess it goes with the territory but I think some doctors are just not great with stage 4 patients. Maybe they don't want to take on difficult cases for fear that their survival rates will suffer??

Best of luck to you at MSK.

[juliej]

I guess it goes with the territory but I think some doctors are just not great with stage 4 patients. Maybe they don't want to take on difficult cases for fear that their survival rates will suffer??

I agree. I think many oncologists are oriented towards helping Stage 1, 2, and 3 patients - they feel like those are "save-able" and we are not. In my local cancer center Stage 4's were given info on counseling and hospice and told to get their affairs in order. The end.

That's why I love MSK. They take on the hard cases, the ones everyone else gives up on. When they told me I could actually have surgery I got goosebumps and tears in my eyes. Me, the one with all the tumors? Me, the one who despite having a good reaction to chemo, was told there was no chance for surgery? Me, the Stage 4b, who everyone else had given up on? Stage 4's really have to advocate for themselves and find someone who will think beyond the standard protocols.

Sorry but I am a mom of young kids so I don't want to talk to you about two years, jerks!

You go, girl!!!! Don't let anyone define who you are or what you are capable of! Be strong and do what you have to do!

Hugs to you!
Juliej

[rp1954]

One thing that is important with stage IV in early dissemination is to push treatment margins in several directions, softly with less damage than normal.

- We were more aggressive in finding and applying useful chemo/chemistry to stop the spread and to maintain it more continuously than considered possible by standard approaches. This took less commonly known papers, experimental and alternative paths that made more sense technically. We used extra tests that enabled extra chemistry and the better chemistry enabled smoother test results with fewer side effects.

- We arranged more surgery when it was termed futile or inoperable by some, and maintained chemistry even around the surgery itself. Some people have had multiple surgeries and other treatments to get their cancer into control, that are not standard practices.

- we maintained and increased the activity of the treatments over time with natural addons to base chemo backbones, backbones like a metronomic Japanese developed, targeted immunochemos (5FU-PSK-CIM), and later the ADAPT protocol.

It is difficult to push any doctor; you have to find collaborators that take an interest in you and your case beyond the cut and dried. In some parts, we have to take the bit in our teeth and forage for ourselves.

After 8 years, my wife dropped the 5FU chemo portion and has minimized her IV vitamin C and oral program. 6 months off chemo and I still cross my fingers.