Dispair, Anger. . .Trying to understand

[Crystald]

I have been in an emotional state since leaving my ONC office Thursday. I thought that fighting cancer was a partnership and the doc worked with you to give you as much time as possible. Maybe I am naive, or lack sufficient knowledge.

Had a CT scan Tuesday, 26 Jan. Appointment Thursday 28 Jan to consult & get chemo. Get to appointment, ONC tells me he has results from my CT. Good so far. Then he oddly says that radiologists are not qualified to diagnose cancer (duh) and that my liver showed new lesions. That he had cancelled my chemo (been on Vectibix mono-therapy), wanted to put me on Stivagra. He felt the Vectibix had stopped working, maybe it had but I was still getting the rash, split fingers, feet, mouth sores plus my CEA was rising anywhere from 5 - 10 points every 2 weeks, but still a far cry from the 555.5 I was at in July, now its 86.9.

Said I did not want to do Stivagra because possibility of it working is only 20%, and compared to the placebo group you only gained about 7 days on it, plus the research I have done (great info here on this forum) showed side effects to be really, really bad. I asked about Lonsurf, no, not until Stivagra fails. I asked about MSS testing, again, he said not needed !?!? Then he said he is putting me in hospice.

Hospice. I asked about Xilonix trial, he never heard of it. After that I was so numb. Finally stopped crying last night. Haven't slept since Thursday.

I gained 2 pounds since my last infusion, am in generally great health besides the stage IV inoperable cancer. I got the neuropathy, nausea, rash etc. Hospice.

Weird thing was he never gave me a copy of the CT report. I am going Monday to get that and the disc. I asked about Erbitux and he said it would not work for me. So i emailed and asked for xeloda, which they agreed to. I figure I need to try anything to keep the tumor growth at bay while I sort this out.

I am feeling desperate, lost, confused. Is this is how its supposed to be? You get kicked to the curb, untreated, until you succumb? Am I naive? I don't have the resources to go to one of the huge cancer hospitals, I am homeless, disabled, living with relatives.

Can anyone recommend a decent Oncologist in south eastern North Carolina?

Thanks for listening. I am so embarrassed but I felt you folks would understand.

[Lee]

I gained 2 pounds since my last infusion, am in generally great health besides the stage IV inoperable cancer. I got the neuropathy, nausea, rash etc. Hospice.

Can anyone recommend a decent Oncologist in south eastern North Carolina?

You do not sound like someone who should be going into hospice. I believe your Onc is wrong and yes it's time to find a new one. I can't recommend one, but if I were you, I would start interviewing several Onc until you find one that is willing to work and fight for you.

And yes, get a copy of your scan and any write up info.

Good luck, don't give up yet. (((HUGS)))

Lee

[KElizabeth]

Yes please seek a second opinion.
Have you already tried Avastin? I didn't see it in your signature. DK37 posted the other day about a trial drug that can resensitize your tumors to Irinotecan. I didn't look where the trial is, buy maybe...

I understand your frustrations on not being able to travel to the major cancer centers; I too can't do treatment elsewhere, but for different reasons. Still you should be able to find a doctor who will try to help you and explain better your treatment options. It's very frustrating when doctors act like their reasons are state secrets.

[JudeD59]

Crystal, I am so sorry to hear this news and all that you are going through. One thing is for sure--you need a new oncologist. I realize you said you can't get to one of the major cancer centers, but is there another oncologist in your town that you could make an appointment with? Someone who perhaps has reviews online that say he or she is up to date on the latest research and treatments? Someone who will work with you as a partner in this fight?

Judy

[SurvivorsSpouse]

Duke Medical center has an EXCELLENT GI cancer group and I believe they work with Medicare/Medicaid.

[Petit83]

I feel you! I haven't slept since thrusday either. I think last night I kind of did better because my brain was exhausted from much researching and thinking of options. Sometimes it is just better go with the flow and leave it in Gods/the good force/ positive attitude whatever you hold on, because you are working hard on your options
Thinking of you and praying for you. Hugs!

[jortego128]

Crystal, you need to have the MSI/MMR deficiency test done. Being metastatic upon dx, the chances are small that you are MSI, but a chance however small is still a chance. The only reason your onc would refuse it is if they dont have a good specimen or negligently disposed of any specimen used for the initial biopsy / histology. It should still be possible to do a needle biopsy / etc to collect a new specimen in any case. If your onc again refuses, dont think twice about finding another who will agree to do it - pronto. If you turn out to be MSI-high, the new anti PD(L)-1 immunotherapies can give you a new lease on life.

Your sig says inoperable, Im assuming multiple liver mets? If you are still able bodied - you may qualify for SIR spheres, Therasphere, or even HAI. Being heavily pre-treated with chemo, perhaps the SIRT may give you better chance of results than HAI, but its totally your choice and by all means, take whichever you can get!

If peri mets, consider HIPEC.

Please be aware of your ECOG status - sounds like you are a 0 or a 1. If that is the case - now is the time to take action - DO NOT WAIT a day longer than you absolutely need to. Some clinical trials do not accept a 2 and almost none accept a 3. Some non-trial procedures, like HIPEC, also demand better than a 3 status. Strike while you still can.

Not to sound harsh or unsympathetic to anyone who choses to take it, but Stivarga is a joke - you are right to refuse it. Near zero efficacy and very harsh side effects? No thanks. If you are going to go, go big - take a chance on something that at least has a chance to work, or if not, just drop everything and focus on QOL and feeling better. Stivarga seems like a bad half-measure IMO.

[CLD]

Sorry for the late response. With 6 kids, someone is always on my lap and it's harder to type than to just read and keep up with everyone's journey. You have been on my mind and I am so sorry that you are going through this. I am reading a book titled The Death of Cancer by Dr. Tony DeVita Jr. He is a pioneer in cancer research, he developed the first multi drug chemo which cures many Hodgkins' sufferers, and is currently battling cancer himself. He said as a doctor he never, never, never, never gives up on a patient as long as they want treatment because...you just never know. I would encourage you to seek a second or even a third treatment because...you never know.

[mariane]

Hi! I am sorry for the late response. I read your message while I was in the hospital and I did not feel too well to write. I live in Atlanta =close so I researched doctors around. There is Dr Chang who is with Vanderbilt as far as I can remember. She was one of the doctors at immunotherapy conference DK 37 described with so much hope. She knows the most about immunotherapy in our corner of the country.
The other option is: try to contact Dr kemeny at mskcc. She takes people with more than liver involvement sometimes even if they failed previous treatment. She has 20 years survivors among people who failed systemic chemo.
I do not see avastin in your signature.
Check tumor for more mutations than basic ones. Your cancer might be sensitive to meds out of standard treatment. Mine is according to genetic testing.
Check MSI/mss status as jortego suggested. People from hospices completely yellow are still alive 2+ years after they responded to pembrolizumab if they were MSI and lucky!
Kemeny cooperates with Piedmont Cancer center in Atlanta. I am sure she cooperates with doctors in NC as well. You do not have to be constantly in NY to be treated under Dr kemeny supervision and she is very aggressive doctor. You need one like this.
Sending hugs and prayers!