lisa42 said:

talked to my onc
I called my oncologist's office to see if I could get in to see him asap, but was told by his nurse that he was going to be out of the office the rest of the week so she would have him call me sometime towards the end of the day. He called me 5:00 and we spoke for about twenty minutes. We discussed the possibility of again trying Folfox- pros and cons, etc. He said that he honestly does not think it's a good idea- that if I could even get through the first treatment with desensitization (I've been allergic to it and desensitization worked in the past when I was on it in 2007 until my 10th treatment where, even with the desensitization and 6 hour infusion, I had another reaction and was then told "no more"), he would not think it a good idea. He said that we likely would have to stop treatment due to side effects, my difficulty with breathing/oxygen levels lately, or I could end up in the hospital with an allergic reaction or in the hospital with another infection, pneumonia again, or something like that. Instead of giving me more time, it could actually give me less. He said we could do just Xeloda or just 5FU, but I told him that since I've had pretty bad side effects with those in the past (esp. Xeloda), I didn't want to deal with chemo side effects unless I was taking a chemo that at least had a chance of packing the cancer a whallup. I asked about regorafenib and any other drug that may on the FDA fasttrack. He said that they are not yet available unless through clinical trials & he doesn't know of any on this coast. Again, however, he thought they could do me more harm than good. He did also say, however, that he doesn't want to jump to any major conclusion based on this one CEA number. He knows CEA has always been accurate for me, but still did say that sometimes it can be affected by infection and other things.

I have to decide if I'm going to continue on the natural extract I've been on since Dec.2nd or not. I run out of what I have on hand on Jan 28th, so I'd have to pay for and put my reorder in by this coming Monday in order to get it on time. I don't know if it really isn't working at all, or if it is just taking longer. $2500 is a lot of money to spend if it's not working at all. I've written an email to the doctor in the UK where I'm getting it from, haven't gotten his reply yet as it was 1:30 here when I wrote it and they are 8 hours in time ahead, so it was way after hours for him at that time.

My naturopathic dr. is in New Zealand until early March and there are two other doctors there I could consult with, but I don't know that I will bother. I've been on so many different types of supplements from there over the last year. Other than help me have some energy (with could be worth a lot), I don't think any of it has really helped my cancer at all. Heck, I strayed from the vegan diet today- went to Subway and got myself a nice turkey sub. Might as well enjoy tasty food if changing my diet hasn't helped me. Not that I'm going to totally abandon it, but maybe indulge myself with things I enjoy to eat a bit more often.

I may still do some research and look into some clinical trials. Even if I don't find anything that I could do, I'd feel more satisfied knowing I tried and- who knows- I just may find something else.

Thanks for your support, everyone!
Lisa

baldwin said:

I just posted a few minutes ago.
Have you ever contacted the Block Cancer Center in Chicago. They administer chemotherapy with a chronomolulated pump. They also have had success with trying Folfox again. If you do call, I strongly suggest you have a consult with Dr. Keith Block. Their feeling is that it kills more cancel cells based on your circadium rythum and my husband was having treatments out there and had good results. They also give you a vitamin infusion to build up your immune system and the after effects of the chemotherapy were not so severe that it prevent you from having chemo the next cycle and because they administer the chemo with the chonomoluated pump, it is not so toxic to your system that is doesn't make you so sick. I can attest to this. My husband had pneumonia in November, lost so much weight, is now on TPN, that we cannot travel from Boston to Chicago for his treatments. I will tell you, when he now has treatment in Boston, the same regimen as in Chicago, he now has diarrhea and is very nauseous, he has never had these symptoms before. It may be because this terrible disease is progressing, his lost of weight, I do not know, I am only reporting the facts. I only want to suggest, if you want to, there may be an other avenue.
We don't know what may work for anyone of us, it is in God's hands.

annalexandria said:

I've been in your shoes,
finding out things have gotten worse despite best efforts, and it's pretty terrible. I'm so sorry you have to face this disheartening news. I hope some of the ideas that the others have given you will prove fruitful. Hugs and strength to you-Ann

mom_2_3 said:

Lisa
Lisa,

I don't have anything to add to the conversation regarding treatment options. I would say, however, that if you were able to find a trial that suited you and it was somewhere in NJ/NY, you are always welcome in our home. We are right next to a train station that gets you into Penn Station NYC in about 50 minutes. We are also central to various other facilities ere in NJ that may currently have trials.

I keep you in my prayers and you are always in my thoughts. You are so beloved to me, to us here.

I would send you bigger hugs than Phil if I could figure out how to code the HTML but as I can't, {{{HUGS}}}.

Amy