December 29, 2011 at 6:29 am #55649peggypMember
Sorry to hear about your latest scans but keep up the fight because John was diagnosed Stage IV over three years ago. He is on his third regimen of chemo cocktails and is having some side effects but he keeps on going. When he was on gem/cis, his counts were always low, and he always had to get a neulasta shot before he could get his next round. I know you are a positive-minded person, so just hang in there and I’m sure your doctors will come up with something that will have you back in the saddle soon. Sending lots of well wishes your way, PeggyPDecember 27, 2011 at 8:19 pm #5564832coupeParticipant
I’ve got a tee-shirt that says: “Tough times are temporary – tough people are legendary”. I’m pretty sure you are one of those “tough people”. I’m sorry it’s been a rough road lately but you are made of the right stuff to get through it. God willing, you’ll soon look back and find it a fading memory. Continuing to pray for you…
BTW, I like to jokingly tell people that a mere mortal couldn’t live my life…
bobDecember 27, 2011 at 7:58 pm #55647lainyParticipant
Byron, I am so sorry about the heart scare, but we all know your heart is in the right place! Happy though that Christmas was good for you and that you are back at work. That attitude of yours is what gets you up every time the CC tries to knock you down. Let’s see now if youy can keep things quiet for a while. Enough is enough!December 27, 2011 at 7:41 pm #55646
Bob, thanks so much for the reply. You brought a big ‘ole grin to my soul. Last week was really tough for me. On monday I was at work and shortly before lunch time I started having a pounding in my chest and in my back (accompanied by pain). I really thought it was because of the blood pressure meds I had just started. I called my primary care doc for an appointment and left work to go see him. They started checking me over thinking I was having a heart problem. (eee gads, like I need 1 more thing) and their protocol for heart problem is to get me to the E.R. So, I get this ride in an ambulance to the E.R. They scan my chest, do 2 separate rounds of blood workups trying to find the problem with my heart…………and they find nothing. All the doctor told me was that I probably had pericarditis and I should call a cardiologist and get checked out by them. I called my Onc’s office the next day and told them what I had been through. (keep in mind, it had been 2 1/2 weeks since my last chemo infusion) The onc’s office ordered all the records/scans from my ER visit and shortly called me back saying my White counts were way down in the cellar.
Neutrophils count was .3 or 300. Anything below 500 is considered Neutropenia. I googled Neutropenia and found that everything I was experiencing was related to that. Heck, the ER people didn’t even mention I had low blood counts. They were too focused on my heart. The next few days before Christmas were the worst experience to date with the effects of chemo. I couldn’t walk across the street without exhaustion. Anyway, Christmas went well and I’m feeling better and back at work today.December 22, 2011 at 10:54 pm #5564532coupeParticipant
Sorry to hear about the bad scans. I used to suggest to the technician that they doctor up the scan with white out or photo shop or something. Afterall, how was I to stay in denial when they kept shoving those pesky scans in my face. Seriously, I’m glad that they are considering alternatives. The next one may be “the one”. I’ve always believed that as long as I was right-side up and sucking air that there was hope. And my friend I have found hope to be some powerful stuff – from hope grows faith and faith moves the hand of God…
Blessings and prayers comin’ at ya,
bobDecember 21, 2011 at 6:29 pm #55644
Thank you so much, Maria. This is what makes this board so valuable. So many people with so many experiences.December 20, 2011 at 8:06 am #55643mariaParticipant
So GemCis didn´t work, well it doesn´t always. BUT as mentioned above, there are lots of other choices!! I personally know two women here in Sweden where GemCis had no effect but they´re living the times of their lives, travelling and working, with other coctails, in these cases Irinotecan, Cetuximab and other things. I had Xeloda+Gemzar for a while, with good effect.
I´ve had 5 o these direct-treatments you talk about, chemoembolization it´s called when you go through an artery in the groin to the liver, or directly to the tumor in the liver. With very good effect. My big tumor (like my fist to start with) is constantly shrinking not showing any signs of life. I think it´s somewhere 1-2 cmx4-5 cm now. I would really recommend this treatment!!
Normally here (University hospital of Gothenburg) that is the standard-procedure at the moment, combining chemoembolization and chemotherapy.
So Byron, a new pair of boxing-gloves, and up and go!
MariaDecember 19, 2011 at 7:23 pm #55642marionsModerator
Byron….I am sure that the tumor board presentation will provide you with the next, best, plan of action. Oh, this ever present waiting game…hang in there….fingers are crossed on my end.
All my best wishes,
MarionDecember 19, 2011 at 6:48 pm #55641
Thanks everyone for the responses. The Onc did throw out 3 general choices…..a different “accepted” chemo cocktail, a phase 1 clinical trial, or (don’t know the language) thing where they inject chemo directly into liver by going through vein in the leg.) He is presenting it to tumor board in the morning then we will meet and discuss what to do. I will forward this info on to him via his clinical P.A. (as I have already forwarded a couple of other things I have found).December 17, 2011 at 4:30 am #55640sandtdadMember
I am on a trial similar to the ones mentioned by Eli. Instead of centuximab I am on a protocol that combines panitumimab with gem/ox. The centuximab studies seem to have some better results but the concepts are the same. Combine chemo with a monoclodial to slow growth while killing at the same timeDecember 17, 2011 at 1:44 am #55639EliParticipant
I am sorry to hear your news. I went through your older posts and my understanding is, Gem/Cis is the only protocol you tried so far. I want to mention another protocol. You probably read about it on this site, but it’s worth repeating…
Ask your oncologist about GEMOX + Cetuximab protocol. It was used in a clinical trial in Austria. Small sample of patients, but very promising results. 63% response rate. 9 patients out of 30 went from unresectable to resectable. Here’s the link to their report:
Cetuximab, gemcitabine, and oxaliplatin in patients with unresectable advanced or metastatic biliary tract cancer: a phase 2 study.
The same protocol is currently being tested in a French/German randomized trial. They reported their interim results. They look promising too:
A multicenter, randomized phase II trial of gemcitabine and oxaliplatin (GEMOX) alone or in combination with biweekly cetuximab in the first-line treatment of advanced biliary cancer: Interim analysis of the BINGO trial.
Your oncologists are supposed to know about these trials but I wouldn’t take any chances. Give them the printed pages and ask them what they think.
EliDecember 16, 2011 at 11:59 pm #55638dianecParticipant
Dear Byron – Agree completely with Marion’s comment that not everyone responds to a particular chemo.
You’re one tough (and sensitive ) guy. I’m rooting for you!
DianeDecember 16, 2011 at 11:17 pm #55637marionsModerator
Byron….Lousy news, but don’t give up hope. Kathy is proving success with her treatments. Not everyone responds positively to the Gem/Cis protocol so let’s see what the doctor comes up with next. Also I am wondering whether RFA (Radiofrequency ablation) or the liver infusion pump has been discussed.
A tidal wave of best wishes is heading your way,
MarionDecember 16, 2011 at 11:05 pm #55636kathybMember
Not the news we want to hear, but it’s not the end of the rodeo. I was diagnosed at stage 4 and given 3-14 months max. Here it is 28 1/2 months later and I am totally enjoying life.
Keep your faith in God. He will carry you through.
KathyDecember 16, 2011 at 9:16 pm #55635tiff1496Member
UGH! I’m sorry!! What are the doctors going to do? New chemo? Prayers for you my friend.
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