Please help - unique situation

[jeanette57]

bjl

just try this, no questions. it worked for me and is a funny solution. EAT one dill pickle. You can sip the juice if you can't eat it. It is what stopped the worst or worst puking. old timer at cancer center told me about it. Now I have 5 jars at all time. Don't know why but it works.

As for the marj. I have not tried it but best friend with MS gets it in a tincture something called a phoenix??? I think she said it helps with the feeling your tummy is trying to crawl out of you (how mine felt). well going to get deported of 5fu pump today. yahooo

[bjl]

got blood results today. CEA up to 61.

Previous values:
(no chemo)
5/20 - 2.6
6/25- 9.3
7/25 - 24.4
8/20 - 50, started chemo
8/30 - 61.9

No idea what this means about effectiveness of FOLFIRI. I would guess my oncologist won't do anything unless CEA keeps climbing.

[Cj51]

Jeanette57 isn't kidding about the pickle juice. No way could I actually eat a pickle on chemo, but sipping a little pickle juice was OK and it actually helped. Onc said it's the salt and other electrolytes. I had a little every day to help stave off dehydration due to nausea. I got the idea originally from Brownbagger. Yeah, it sounds kind of odd but if it helps, great, and if it doesn't, well, it won't hurt you. (Unless you, like my husband, would rather keep the nausea than be in the same room with an open jar of pickles).

Seriously, it sounds like you are handling this on your own terms, and that's important. As the others said, don't be too accepting of opinions on 'how long' you have. Many of us know of folks who stayed around far longer than the doctors said they would. My aunt was given 3 months to live with advanced colon cancer. 14 years later, 2 weddings and 2 grandchildren later, I attended her funeral. You never know, but you have to be the in charge of your own treatment, and be the one that decides how far you want to go with treatment, and when to stop. Sounds like you are there, and that's a healthy thing.

Prayers for you and your family, and a virtual hug, young man. We'll be here if you need us.

Cj

[bjl]

Thanks cj. I have never liked pickles, but hell, it's worth a try if it will help with the nausea.

I guess the most difficult thing has been the mental transition over the past month. I learned how to live with cancer for a year with the mindset of "this can be cured."

Now, it seems like that is very unlikely. I hope I get into MD Anderson for a 2nd opinion, not because they'll have some magic rabbit in a hat, but maybe they can at least provide me a proper diagnosis. I still honestly can't believe that in 2013 I can have a cancer with an unknown primary- after 2 biopsies, a year's worth of chemo, half a dozen CT scans, countless blood draws, etc.

[jeanette57]

bjl
don't give up. ask someone with diabetic issues - taken insulin daily. They (onc doc) where I go said to treat it like this cancer with the chemo for the rest of my life- hum... yuck. pissed me off, but now thinking mind set for a few years I can do this. my doctor wants me to be a gunee pig- no way- research some one else...

did you find out if you are WILD KRIS????? if so then Erbitux is a f--king monster but it works for me. I am so rashed, so sick with hand and foot bleeding, but kicked my numbers from 77 to 6. I get chemo bomb every other week and Erbitux every week.

I am off for 3 weeks, every day doing fun things - getting ready to see the ocean, getting 3 new outfits. Need a new washer so hunting this week - home depot seems best...reading, eating goodies, I am even having a drink today, first in over 4 years. Love Dr Pepper and Jaggarmiester. Yum - weak but taste counts. I am enjoying each day as a treasure.

[Cj51]

I think Jeanette meant KRAS wild. If you've had genetics done, you'll probably know.

This transition from "I've got something that can be cured" to "possibly not" has to be really tough. It's never an easy journey, but this is particularly hard. Again, my prayers are with you and your family. The only way to go is forward, so keep putting on foot in front of the other, I hope you can get in at MD Anderson (if that's what you choose) and find out exactly what is going on. It's just a belief I have, but I've always felt that knowledge is power. I can face just about anything, if I can just understand it and know what I'm up against.

All the best to you,

Cj

[jeanette57]

yup- that is Kras wild.

Nothing is to hard second by second, minute by minute, hour by hour and day by day. If I can survive stinky George (stoma) and bag, then keep going forward.

I had mixed feeling when people tell me how strong I am, what the heck, what else would I do? kill myself - kinda defeats the surviving daily plan. I am doing things wrong - sure - eating lots of goodies - cupcakes and such, but I did want to enjoy what ever time God gives me and veggies don't do it for me. Vacation day 3 up and running -

[bjl]

I had my genetic profiling come back, negative for any mutations including KRAS. Apparently the tumor came back HER2+ though, so I guess I might be going on herceptin at some point.

[bjl]

I'm a day out from being disconnected from that horrible pump. 2nd round seemed to go a little better than the 1st, although my hair is falling out a little, my taste buds are a little wack, and I feel more tired.

Finally heard back from MDA, my next round of chemo might be delayed as I fly out there for a consult.

[Cj51]

We all sympathize with that gosh darn pump. It's awful. But, I called it 'the cost of living'. You do what you have to, and pray for sunshine after the storm.
Glad it went a little better than the first one, though. Here's hoping that it's not a bumpy ride for you.

Best,
Cj

[Traveler001]

Hey bjl,

Glad you are going out to MD Anderson. You are in great hands out there. Just wanted to tell you that I did Folfiri with Avastin last year and had mixed results. Some of the cancer was destroyed but some of it was not and became more aggressive. Trying Folfiri with Erbitux next.

I also wanted to say that I know MD Anderson is going to want to redo the pathology and ask your original hospital to send the tumor sample to them to do it. They will also want to do their own scans as well. You may already know that. But I just thought I would mention it. They are very thorough out there, and although it may be a little frustrating, it is a good thing for them to do whatever they need to to help you. (Actually if they dont ask to redo the pathology, I would insist.)

Best of luck to you,

Traveler001

[bjl]

thanks traveler.

MDA has completed my pathology and my diagnosis is still up in the air (germ cell tumor vs. poorly differentiated adenocarcinoma).

my oncologist wants me to do another round of FOLFIRI so I'm looking at a Sept. 24 date at MDA.

I'm supposed to meet with one of their germ cell doctors, a GI doctor, and someone from their Phase I clinical trial team.

I'm not really expecting anything promising, but I figure I owe it to myself and my family to be officially evaluated by the #1 cancer center out there.

[Traveler001]

What is a Germ Cell tumor? I haven't heard about that ever.

[CRguy]

Germ cells are basically the progenitor (parent) cells which give rise to gametes ( sperm and eggs ) produced in the testes and ovaries.
Wiki actually has a pretty good technical listing describing them and germ cell tumors, if you want some heavy duty reading !

Sending Cheers and best wishes to both you dudes.
CRguy

[bjl]

Okay...halfway through round 3 of folfiri + avastin. Same old nausea that won't let me eat for 3 days. Some blood in my vomit, hopefully not a bad indicator.

CEA has gone from 60 to 80 in 2 weeks...not good. Scans this week. If there's disease progression, I may have exhausted chemo options.

It would the be on to targeted Her2+ therapies (not chemo) and then, well...hospice.

I'm flying out to MDA next week for more appointments.

Fuck. I just want to wake up, feel muscles in my chest and no mediport. I want to look at my calendar and see that the next weeks are filled: school schedule, dinner dates, church functions, sports games.

I feel like I'm slowly climbing to the precipice of hospice. They can't stall the cancer any longer- all they can do is make death as painless as possible. I'm sure it's terrible to enter into hospice at any age, but it feels fucking unfair to be such a reality at the age of 26.