Anyone have experience with Erbitux?

[OKNancy]

I tried to search the group but didn't come up with anything.

My husband did really good with radiation and cisplatin treatment for Stage IV cancer at the base of his tongue ( same thing that Alfredo in this group had). They were super happy with his progress and lack of serious side effects etc.

Unfortunately a small tumor remained in his neck. Pushed out from a lymph node to the fatty tissue. The surgeon got most, but there may be microscopic bits.

He will have more targeted radiation and possibly Erbitux.

I sure know all about radiation and cisplatin, but Erbitux is new to me. I read all about it ( lol including that it was the drug that got Martha Stewart in trouble!) and all about side effects. However nothing is better than reading other people's experiences.

[Solly Mack]

1. Me. Caused hyper adult like acne on my face and chest area. Actually really bad hives.

https://www.democraticunderground.com/?com=view_post&forum=1146&pid=2033

https://www.democraticunderground.com/?com=view_post&forum=1146&pid=2053

I was dosed with liquid benadryl during chemo, so I napped a lot.

Got some nausea.

Mostly, use Eucerin for dry, damaged skin once home. DO NOT try anything for acne of the skin since it's not acne, though I looked like I had a raging case of acne on top of a rash on top of hives.

They can give him a steroid shot if the rash gets too bad - and it can. I had to take a shot for it.

Erbitux works well on the fleshy tissue of the neck and mouth. It helped to save my life.

[OKNancy]

3. We just got this news today, so my information may be sketchy

but our nurse navigator did say that a rash was actually a good sign that it was working.

My concern is he is starting this in about 10 days. I don't know how many or how strong.
We are planning on flying to Portland Oregon to see our daughter on June 21.
I absolutely know my husband will not go in public with a nasty rash.
He's a dear man, but a tad vain. Not vain, but overly concerned about what other people think.

I bet we will have to reschedule our trip. No refund as we got the Southwest el cheapo ticket, but I' pretty sure you can re-schedule.

[Solly Mack]

6. That's what I was told too. The rash was a sign things were going well.

I forced myself to go in public. Sometimes I forgot when I left the cancer center, because I wasn't the only one inside who had the same rash - no shame among cancer patients. No explanations needed. So I would bebop into a store and only remember once the staring started. I got to the point I smiled and waved at those looking too long. Children were brutally honest but they're children.

Adults are often curious but too embarrassed to ask. That's their shame - not mine. Not your husband's.

He'll need a hat that covers his face and neck. The sun aggravates the rash.

It took about 2 weeks for the rash to really take hold for me. Everyone is different, so it could be shorter or longer. Some have only a light reaction. I was a worst case for the rash. It was bad. I called myself Quasimodo..between the swelling, the rash, and the lopsided face still healing from surgery...I looked pretty bad.

I was getting radiation at the same time and I'm sure that didn't help any. Fortunately, the rash went away before the 2nd degree burns arrived.

I survived (so far) but I am not a shining example of the best that could happen during and right after treatment. I almost died a month after treatment ended.

[alfredo]

10. My radiologist recommended Aquaphor.

I like what it does to my skin.

[Solly Mack]

11. It was my chemo doc that recommended Eucerin for the rash.

Worked great on it too.

[alfredo]

12. I got it for my neck. I look like I have a dirty neck.

They gave me a big tub of it. I have a lifetime supply.

[Solly Mack]

14. I was told the neck coloring wouldn't fade but mine has. I use lots of cream on my neck

and I might just give your stuff a try. I'm always looking for new stuff to try for my neck.

I am back to my usual face routine but I keep heavy creams on my neck and chest area. As well as sunscreen.

I also wear hats to keep the sun off.

[alfredo]

15. I have my hats. I've switched over to my old straw hat.

I avoid 10 - 3 sun

[Solly Mack]

16. I am currently using an old boonie cap. I have several. (go figure)

[alfredo]

18. I have an old 40 year old cloth Stetson I use when taking photos.

The flexible rim doesn't get in the way

[OKNancy]

17. My husband was told to use aquafor twice a day

on his neck, but of course not before radiation. He did it religiously and he had little "sunburn" He only had a tiny bit of peeling and that was the last two days.
It's way too heavy for an all-over body rash though.

Off topic, but still on cancer. My husband did real good as far as eating. He had a tube but it was only necessary the last two weeks.
But a month or two after it was all over his swallowing slowly deteriorated. They are now sending him to a rehab gal who will test him and then give him rehab. On top of that they have a "lymphedema girl" who massages the neck to help with fluid build-up.

Oh, and he also has to get a new mask for his second round of radiation. He is getting that done today.

[alfredo]

19. I'm going to decorate mine someday.

[PennyK]

2. One vote here for Eucerin

My situation is completely different; however, I've found that Eucerin original cream, in the jar, works wonders on dry, irritated, radiated skin. The area in question was bright red, and ten minutes after using Eucerin, the pain diminished. I use it every few hours, and the skin is now "skin color."
It IS very thick, and I call it my "spackle."

[sinkingfeeling]

4. People in my SPOHNC group had the adult acne as side effect.

[OKNancy]

5. I wonder how long it lasts after treatment is over

the rash.. that is what the doc and nurse called it.. lol not acne.

[sinkingfeeling]

7. One of our youngest members (2 cancer bouts and only 26

years old) had it for about 6 months afterward.

[OKNancy]

9. oh dear...

I'll keep that from my husband.

[alfredo]

13. I bet it is age dependent, the older you are, the longer it takes.

[OKNancy]

20. All went well with the Erbitux but big problems later

My husband had so much success with his first round treatment of his base of tongue cancer.
He had cisplatin chemo and radiation. He did get a feeding tube which he only used about the last three weeks of treatment.
During that time, he still was able to swallow and eat some.

He did so well that we took the tube out in December.

Then he had a scan in April. A tiny spot in his neck, long story short he had 9 lymph glands taken out in his neck and a bit of tissue that had cancer in it.
They just weren't sure so he went back for 18 days of twice a day for mild radiation and three erbitux.

Then it happened. He kept coughing while eating and drinking.
Swallow test Wednesday... they stopped it. Aspirating. Tech says don't drink or eat until you get a tube.
Go back Friday morning, get a tube, can't "eat" until Sat.

We were pros at the tube feeding so I ordered my own formula ( much cheaper than through hospital).
He got diarrhea then bloody diarrhea.
This is his 10th day of bloody foul diarrhea.

Had a GI panel - no c. diff or any other bacteria or virus detected
Then went to oncologist p.a. She says since he took 2 kinds of antibiotics for the erbitux rash, then had chemo and radiation that it will take time. Continue an aggressive course of Imodium.

He has no fever, no cramps, no pain.

Tomorrow I'm going to call and have them schedule some sort of scope. I insisted on a gastroenterologist referral and was told one was made.

Cancer treatments are over and they say they are optimistic he is finished.... but now it's the damn side effects!!

Poor guy wants to go back to work, but he is a house painter at rich people's houses and he said no way is he going to take the chance.
Of course we can't anyway because of all the appointments we have.