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AFTERNOON/Jim's oncology appointment//UPDATE

Nana2's picture
Nana2
Posts: 255
Joined: Mar 2010

Went to the oncologist this morning and Jim is being switched to Folfori with erbitux. We really didn't ask too many questions other than about side affects. I'm sick still so my head is in such a fog. Will he still have the neuropathy and the sensitivity to cold on this treatment? Have any of you found that you did not respond well to folfox but had good or better results with folfori and erbitux? Anyone else do the liver resection and have the tumors all come back?
Discouraged but not without hope,
April

UPDATE
Had to stop the Erbitux after two tries today, he had an allergic reaction both times. So he can't take the Avastin because of bleeding issues, he can't take Erbitux because it made him shake, get cold all over and caused pain in his chest, arms, legs and back. They flushed him and gave him darvaset, hooked him up to the pump and added Irinotecan. Looks like our options are slimming. So what do you guys think? Tina, isn't this the same thing George is on? CPT-11? What's left if this doesn't work?

AnneCan
Posts: 3692
Joined: Oct 2009

I hope you start feeling better soon. I am on folfiri, but with avastin, not erubitux. It has been pretty effective for me. At some point I may be on erubitux if this current cocktail stops working. I want to wish Jim good success with his new chemo combo.

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I too did Folfiri with Avastin not Erubitux. I had great success with it. No cold side effects with that cocktail but I don't know what the side effects of Erubitux are. I am sure others will fill you in. You both take care.

Jennie

mukamom's picture
mukamom
Posts: 402
Joined: Oct 2010

did folfri+avastin and it worked really well for him. Shrank tumors in liver. Only side effects he had were nausea, fatigue, hair loss on arms, legs, chest....everywhere but his head (go figure). He did 26 weekly infusions, 2-3 hours long with a break when he had a right lobe liver resection. He did have progression in the left lobe the beginning of 2010 which did not respond to chemo, so he had stereotatic radiation...seems now there might be another spot, but it may be nothing.. we are "watching". *sigh*.
There is a high chance of progression with stage IV even after resection...sometimes there is no progression...its a cr*p shoot..

Best to you and your hubby!

((HUGS))
Angela

geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

George has now started CPT-11 which, if my understanding is correct, has the same components as Folfori, just a different mix of drugs. We were warned about diarrhea (sp) and to have Immodium AD on hand for it. He went to the bathroom a few times after infusion, but not urgently where he had an accident. The drug manufacturer directions said to take 2 after infusion, George did that, but then he didn't go for a day or so so he stopped taking them unless necessary. Appetite was down for a couple days and he was fatigued. Also warned to say very hydrated because if you get the diarrhea you can be depleted of fluids quickly.

Have not had Erbitux. It is my understanding one side effectof Erbitux is the rash, an acne like rash. There are creams for it that can be prescribed. People get the rash in varying degrees so stay on top of it if Jim starts to get the rash for I understand it can get very annoying. Start a thread and others will chime in as to what cream to use and what works and what doesn't. The good thing about the rash (as if there is anything good about this cancer mess) is that it means the drug is working.

Take care and keep us informed - Tina

Nana2's picture
Nana2
Posts: 255
Joined: Mar 2010

I see here that is what George is on, how long has he been on it? Is he handling it okay?
Thanks Tina,
April

geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

George has only had one treatment and handled it pretty well. Was suppose to get another treatment but they couldn't draw blood from the port so no treaatment. Went to hospital for dye test last Wednesday and port is working fine for drugs going in. He has a fibrotic sheath at the end of the line and that what is causing the problem, when they draw up it covers the end so it has been decided to replace his port, getting that done this Thursday, this is his 3rd port. We spent a good part of the day last Thursday putting TPN in the port to dissolve the sheath but unfortunately it didn't work. Left the TPN drug in all weekend and on Monday, still no blood draw so no chemo again. Will restart chemo next Monday. As far as the CPT-11, George will be undergoing weekly treatment, not bi-weekly like Folfox. Avastin will be added every other treatment.

Lately, if it is not one thing it is another. Nothing major in the big picture but a royal pain in the butt. I think I will start saving the hospital wrist bands and use them for garland on the tree next year for I fully intend on George being here to enjoy another Christmas.

Gosh, I'm sorry for Jim's troubles.

Roger (Crow71) was on Folfox, had his surgery, then went on Folfori which failed him and his docs have now put him back on Folfox. Is this an option for Jim since he has not had Folfox in a while to go back on that drug since it did so well for him the first time? Lisa42 is now on Gemzar. You can PM her about the details. If memory serves, she has had all standard treatments in the past.

Since Jim's cancer has returned to his liver ask about SirSpheres or a TACE procedure. SirSpheres is the radioactive beads and TACE, if memory serves, is similar but instead of radioactive beads it is chemo beads. Google them and you can find out more. Some on our board have had these procedures. It is a liver directed treatment.

I'll send you a PM.

Hugs - Tina

AnneCan
Posts: 3692
Joined: Oct 2009

I am really sorry that Jim had this reaction.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Can they low the dosage?

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hi April,

Just to answer one of your questions (I don't have the other answers)... CPT-11 is another name for Irinotecan which is one of the chemos in the FOLFIRI combo.

FOL - Folinic acid (leucorvorin)
F - 5FU
IRI - Irinotecan

CPT-11 - Camptosar is the trade name for Irinotecan. CPT-11 and Camptothecin-11 are other names for Irinotecan. In some cases, health care professionals may use the trade name Camptosar or other names CPT-11 and Camptothecin-11 when referring to the generic drug name Irinotecan.

Hope this helps :)

Cheryl

geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

George is just getting the CPT-11 (Camptosar). He is not getting the 5FU part of the mix and I dont' think he is getting the Leucovorin either.

Thanks for the explanation Cheryl. This stuff can get confusing.

Tina

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Tina... I didn't realize George was just on the CPT-11 (Irinotecan). I tend to get everyone's treatments mixed up and can't remember who is taking what. I will be starting the Irinotecan on Feb 7th. I get my port put in on Jan 20. Now somewhere around here was a note of yours (I think it was yours) with what side affects George gets with the Irinotecan... can you refresh my memory? Also... how is he feeling generally when he's between infusions?

Hehehe... Kathy (luvinlife2) informed me that although her hair would thin, she didn't lose it all... and here I was all set to run out to the nearest wig store and get me fitted for a wig, thinking I was going to lose all my hair. Maybe not? Maybe I should hold off on the expense of a wig? Maybe I should just buy an eyebrow pencil to draw in eyebrows (OMG! If you all knew how bad I was with art, I can only imagine what any kind of drawn in eyebrows by me is going to look like! The thought is terrifying... not because I might lose my eyebrows, but what my artwork of drawing them in is going to look like!) LOL!

Cheryl

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

not mixed with Monoclonal anti bodies.
Hugs and prayers for a successful result!.

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Folfiri has been my 1 and only chemo treatment since this all started last year. In July, 2010, I had 4 liver mets and about 15 lung mets scattered everywhere. By January... I was NED. No signs of nothing on PET scan and CEA went from 75 to below 5. I went all those months without losing ALL my hair but it was very thin and looked horrible. Diarrhea was the biggest issue. I was then put on a maintenance dose of chemo that basically just removed the CPT-11. However, that was short lived as I broke my back in a fall that christmas and they took me off everything in case I needed back surgery. Went several months with nothing while tending back and then had recurrance in lungs and CEA rose to 10. 1 met we found was one we thought we had killed...but it just went dormant and hid til it regained stamina and resurfaced....little bugger! That one was located in the hilum area and was giving me breathing probs so I wanted it gone....NOW. I had Cyberknife zap that one out. Then I went back on Folfiri to treat the other one. Only had 2 treatments of it and was put on maintenance chemo again as CEA has gone down to normal again. Weird thing was that Folfiri wiped out ALL my hair the second time after only TWO treatments. I mean I was BALD BALD BALD!!! It's the CPT-11 that does that cause both times on Maintenance chemo it was the only missing thing and hair grew back. Oh Cheryl..... ya, I am not an artist either and was pretty much looking like a clown with the brows I was drawing but guess what I found???? They actually make eyebrow stencils.....uh huh..sure do... and they is pretty!!!! So with them..fake lashes.... wig.... it was all good!!! LOL.... anyway, I have a PET/CT scheduled on the 11th of this month and I am keeping my fingers crossed that I am NED again. I prefer to think of it as "vacation"... breather time. I have changed many things in my life THIS time with diet, juicing, supplements and added a Naturopath Doc to my team. I do not intend to stay on chemo the rest of my life as they say I need to do...nope...gotta be another way....some have found "another way" and I am hoping and praying for that too. April, please PM me if you have any questions. I have had several other side effects from the Folfiri but nothing unmanageable. take care........... Jennie

AnneCan
Posts: 3692
Joined: Oct 2009

You inspire me.

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

why thank you Anne!

Nana2's picture
Nana2
Posts: 255
Joined: Mar 2010

I agree!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

April,
I hope hope you find something chemo combo that works.
It could be time for a second opinion. Just a thougth.

and Jennie
I am going to find Naturopath as well.
I hope your NED on the 11th

Prayers for you both
Pete

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

I'm still too new to the chemo's and diagnosis to have much input. But I do wish you both so much in the way of thoughts, wishes, and prayer's!

Gail

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