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Starting new chemo protocol after herceptin

mario33ec
Posts: 22
Joined: Aug 2011

Round 2 of chemo-

by mario33ec on Sat May 12, 2012 01:45 PM
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Hi all,

Have been on Herceptin for almost six months but Ct shows that it ain't working no more so now I am told the next dose is 5fu and irrocentin (sp?).

Has anyone started with Herceptin and then moved onto this? Was there any success? I know that I have to worry about diarehra again but this time I will be more ready for it. I will also be getting a port and will have to wear a pump for the infusion.

any tips or personal stories much appreciated as the journey continues...

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi Mario33ec:

My husband tested postive for HER2, but did not partake in the clinical trial - he was already tattooed for tomography radiation and that clinical trial would have delayed treatment and we chose not to do that (diagnosed 11/21/11 and did not start treatment until 1/4/12 - so we felt that we had been delayed quite long enough as it was.

Our chemo onc did tell us that there are conflicting reports as to whether or not herceptin will be of help in the treatment of EC with those with the HER2. If Don has a recurrance, I would imagine they will reevaluate at that time and decide whether or not to add herceptin to the treatment.

The port is going to be a Godsend for you - it will done on an outpatient basis and the port will not stick outside of the body. They will probably use the port for blood draws and hydration if that becomes necessary. Most people don't even need to use the numbing cream on the port area before infusions, but some do. We have no experience with the pump, but many do that are members of this site and they can help you out with that.

Please keep us posted on how you are doing ok?

Sending some positive mojo your way.

Hugs,
Judy

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi Sherri:

It was not offered to Don unless he wanted to do the clinical trial (which is another story, and he did not do it). I remember that it was a cost prohibitive drug if insurance does not cover it.

If I remember correctly, our insurance does not pay for it unless you have a recurrence. So in the event that happens, I'm sure it will be offered to Don. All the data is not in yet on the use of herceptin with esophageal cancer, but I'm sure they are gaining some sort of knowledge with the use of it.

Thanks Sherri - I know you have a fountain of knowledge and I really appreciate any input you have for us.

Hugs and FEC,
Judy

mario33ec
Posts: 22
Joined: Aug 2011

Thanks for the support everyone!

I was on both Herceptin and Cisplatin initially but around Feb I was only on Herceptin (never really asked why).

I was told from day one that the Herceptin would eventually stop being effective so no surprise that I am now moving on. But it did help for as long as it did-there is no spread to other major organs. Right now it's just mets to the lungs in addition to the tumours in the esoph/stomach junction.

I am so worried about diarehhea since it DESTROYED me last year! Although looking back I did not utilize my feeding tube nearly as much as I should have.

As for the port I was not looking forward to it but now it sounds like it will make life alot easier.

I'll keep y'all posted on the journey, Stay strong!

Freida
Posts: 191
Joined: Nov 2011

Hi Mario
Bill had 5FU via pump. His first 2 months of chemo he had taxol and carboplatin by infusion at the hospital then was hooked up to the pump for 48 hours. After that 2 months he had chemo and radiation for 6 weeks and would have the taxol/carbo every other week by infusion at the hospital, and the 5FU pump every week for 5 days to coincide with radiation. The 2 day infusions did not seem to cause many side effects for him. The 5 day infusions he developed horrible big mouth ulcers (mucositis)which they said was from the 5FU - if you develop that ask about meds for it early. Bill had it for 2 weeks and had mentioned it to the doctor both weeks and it was the 3rd visit when their main nurse was there that she looked at his mouth and said "we have a medicine for that" and made sure it was prescribed. They ended up reducing the strength of the 5FU because it was so bad. He did not suffer from diarrhea. he did find he got more tired with the 5 day 5FU and he was always so happy to get rid of his "baby" at the end of the week.

Bill had a PICC line, not a port, so can't advise on that. He also never had irrocentin. The drug combos he had, along with the radiation, did a good job for him.

Good luck. I hope it all goes well.

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