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Maintenance chemo like Erbitux

sonyk728's picture
sonyk728
Posts: 102
Joined: Jun 2011

Happy to report I had my first clean PET scan and last chemo last week. I'm still on my 5FU fanny pack until Monday, but so glad to be at the end of treatment!

My chemo doc is researching putting me on a maintenance chemo like Erbitux. Of course I'm hoping I don't have to do this, but what from he tells me about Erbitux it's only a 2 hour infusion every 2 weeks. It's a lighter chemo in that you don't lose any hair (already lost mine any way), and about the worst side effect is facial and chest acne.

What has been your experience with maintenance chemo like Erbitux?

- Sonja

longtermsurvivor's picture
longtermsurvivor
Posts: 1758
Joined: Mar 2010

Here's the truth of the situation, and this cannot be sugar-coated. I have read your bio, and for purposes of this discussion, there is no advantage to pretending the monster isn't lurking somewhere. You have metastatic disease. Youve had a very good response to treatment, but the odds are high that the enemy is still out there waiting. That's just the nature of the thing.

Erbitux for maintenance is a marvelous idea for you. It has been shown to significantly delay reoccurance, and for most, it is simple enough to take. There are exceptions to the rule, and I was almost one. I was on erbitux for about 18 weeks, but found myself to be an overresponder. This eventually lead to them having to discontinue the medication. But understand that,different than traditional chemotherapy, the overresponse was not life threatening. The drug does not cause damage to kidneys, or neurologic system, or bome marrow. It is simply skin reaction, not life threatening. My experience is not the ordinary with this drub, I very dramatically overresponded, and it wasn't just acne. And it isn't more than about 5% of us that respond this way.

There is, in my mind, no question you should be on this drug.

Best to you.

Pat

jtl's picture
jtl
Posts: 419
Joined: Sep 2011

I was on Erbitux concurrent with radiation for 8 weeks. The worst side effect was facial acne for about two weeks. This was treated with antibotics and that took care of it.
Regards
John

sonyk728's picture
sonyk728
Posts: 102
Joined: Jun 2011

John- thanks for your response. Love the picture of your dog. Is that a lab mix? So cute.

Happy St. Patrick's Day!

- Sonja

sonyk728's picture
sonyk728
Posts: 102
Joined: Jun 2011

John- thanks for your response. Love the picture of your dog. Is that a lab mix? So cute.

Happy St. Patrick's Day!

- Sonja

jtl's picture
jtl
Posts: 419
Joined: Sep 2011

Her name is Katie and she is an American Water Spaniel.
John

sonyk728's picture
sonyk728
Posts: 102
Joined: Jun 2011

Thanks Pat. I guess in the back of my mind I know he'll put me on Erbitux and that it is a good idea. I'm already dreading my next PET scan on July 6. They told me that if I get clean scans for 2.5 years I should be good to go. That's a long time, considering my history. I just want to be done with all this, but should just enjoy that I have a clean scan now. Probably time I look into some post-treatment/survivorship (can I call it that?)posts to get some inspiration.

Best to you,
Sonja

longtermsurvivor's picture
longtermsurvivor
Posts: 1758
Joined: Mar 2010

and it is my fervent wish that you are one of those. OTOH, you should be as aggressive as possible with this thing. In your mind, go right ahead and image yourself as being disease free. there is absolutely nothing wrong with doing that. Will yourself to be cured. At the same time, acknlowledge that this other is necessary, and just knuckle down and do it. Thats what i do every day, it is even part of my Tai chi practice. That will be the very best of both situations.

Pat

sonyk728's picture
sonyk728
Posts: 102
Joined: Jun 2011

I keep seeing posts about NED. What does that mean?

longtermsurvivor's picture
longtermsurvivor
Posts: 1758
Joined: Mar 2010

It simply refers to the fact that current workup shows "No Evidence of Disease..."

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Sonja, I just want to remind you that you are not a number or statistic...you are you. Each of us are different and bring a wide array of genetics and characteristics to the table.

Try to stay positive, stay healthy and eliminate the stresses that you can.

Thoughts an prayers for a long and healthy life.

Best,
John

sdp's picture
sdp
Posts: 138
Joined: Jan 2012

Hi sonja,

My onc is also recommending maintenance chemo of erbitux - but weekly not biweekly.

For atleast 3 months after completion of adjuvant chemo. my adjuvant chemo of 2 balance treatments of FOLFOX plus erbitux gets over in two days.

Pl share details of your experience and how long u been on the erbitux maintenance chemo,

Scan results, has it been effective ? Was it worth the severe effects of drying and peeling of skin,
Severe facial acne and rashes on the chest, face, hands back etc.

Did you suffer from the above side effects ? How did u contour the side effects etc.

Thanking you in anticipation of a quick response.

Regards

Shitiul

phrannie51's picture
phrannie51
Posts: 3620
Joined: Mar 2012

since you posted in the summer...wondering how things were going. Sounds like things are going pretty darn good!! I don't know anything about Erbitux, having never had it...but from what Pat has said, it sounds like this might be your ticket...I HOPE SO!!

There sure are a lot of gutsy people on this site, and you're one of them!! Sending positive thoughts, and prayers your way...

p

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I had Erbitux each week to help radiation. The only side effect was slight nausea, never enough to cause vomiting. However, crackers (saltines) became my friend. I found it was best never to have either an empty stomach or a full stomach. I nibbled all day, to just keep a little something in the stomach. Didn't gain or lose weight. Rick.

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