Hi all. I have today been told my illness is chronic, i.e. not curable, so in treatment/containment mode. The plan (depending on how I react) is 6xheavy chemo sessions every 3 weeks (each requiring about 5 days' hospitalisation); I'm afraid I don't at present know what the chemo mix is - I know it includes cisplatin, but also quite a lot of other words lol, not written on any of the bits of paper I got today, will specify when I know.

This initial zap-it-to-hell treatment will be followed by ongoing weekly Erbitux perfusions. That Erbitux treatment is weekly for the (un)foreseeable future, i.e. until there's no point.

I've had a look at some of the posts about Erbitux here, and it doesn't seem to me that it is used in this long term way in the US. I will say my chemo consultant is very much in the forefront of research and treatment; and he said he has 'a few' people he started treating this way in 2004 who are still here, i.e. it can extend life-expectancy considerably. Or not.

He particularly mentioned skin care as being a necessity, as it can cause crevices in the fingers and heels, etc., so will have to use special lotions; and acne/skin rashes. But for the rest, I have no idea. Has anyone here got any long-term Erbitux treatment experience, please?

Thanks!

Hi Mungolina

I have herd good results from Erbitux on a few people. My mom has'nt used the Erbitux treatment just yet because we were told to save it for later when others have failed. I'm not sure if once you use the Erbitux it stops your options for other treatments. You might want to discuss it with your doctor.

Good Luck
Heidi

Erbitux is used as maintenance chemo here also, maybe not as many on this site, but seen a few elsewhere. One of my oncologists was thinking about Erbitux long term for myself a few years ago, usually at least 6 months, but I was eventually treated elsewhere, so that never happened, but did have curative treatment with 6 weeks Erbitux, Taxotere and radiation. The long term effects are just about the same as short term with the skin rash, and others, which may or may not occurr. The facual rash is a strong indicator it is working.

The first infusion is usually a loading dose, around 400mg, and subsequent infusions around 200mg, depending on height and weight. Benadryl is usually infused before to reduce allergic reactions, side effects. You will be closely monitored during your initial infusions since there is a very rare chance that some have a severe allergic reaction or heart failure during that time.

http://www.erbitux.com/index.aspx

http://chemocare.com/chemotherapy/drug-info/erbitux.aspx

Your initial chemo with Cisplatin sounds like Induction Chemo, also called neoadjunctive therapy. It was initially PF, and then TPF, Taxotere, Cisplatin and 5-FU, 25 years ago, but there are others now added or replaced in this chemo cocktail. I didn't do too well with this in 2009, but it killed all my cancer after 5 days of infusions, but may not last, and my tonsil cancer never returned, lymph nodes did.

A year after Erbitux, I had Carboplatin along with Proton Radiation.

Good luck

Hi Mungolina.
My father was told to use Erbitrux by a doctor in India. I believe that if his initial treatment was Erbitrux he would have survived. A lot of people has had positive reactions to it and has given them much longer survival rates.
He was told to do it once a week for 3 months as well. and likewise, chemo once in 3 weeks with 5 days hospitalization. You are on the right track!
Only prob is erbitrux is that it causes neck and shoulder pain ( especially right side). so make sure you apply balms and heating pads, ice packs etc to deal with that pain.
I wish you all the best in your treatment. keep fighting! believing that you will come out of it and that fighting spirit is what will get you out of it

Hi KJB - thank you for the feedback. Interesting about the neck and shoulder pain - certainly I've read it can cause problems with hands/feet, circulation and skin issues. I already get neck and shoulder pain from the previous surgery/radiotherapy, so I also happen to know a really good specialist physiotherapist for it - although I no longer live 10 minutes away from her like I used to! But she is right near the actual treatment centre, so I am sure I can combine trips in one way or another.

I am sorry to hear he passed away. I am lucky the team here has kept me alive for 5 years so far, I'm hoping for at least the same again!

Sorry - PaulB, thanks also for your helpful and informative reply. The cisplatin chemo I had initially was not intended as a treatment of the cancer itself, but as a means of making the radiotherapy more effective - I don't know what the term may be in English . I'm just guessing, but believe for that it was fairly low doses (175mg).

They do all sorts of heart checks etc. before the treatment starts, indeed, so obviously that side is a concern. Interesting that the face rash etc. indicates it's working - there's a positive side to everything! Must remember that.

sweetpe, thanks for your comment too. I believe they have dismissed other forms of treatment now anyway, i.e. they do not consider that surgery would be effective (in fact, probably dangerous as possibly liberating more cancer cells into the system), and radiotherapy is also not seen as the best option this time, although I am going to talk to the radiotherapist myself to understand why (at least for reduction in size of the growth?). That being said, the chemo consultant did call and speak to him while I was there, because he wanted to understand the decision making processes that had gone on - he was surprised I had previously had the lung metas surgically removed rather than treated by radiotherapy, and was satisfied with the answer; but he didn't convey it to me or I didn't take it in. One doesn't always take things in when the brain is coping with emotional stufff, eh.

It is hard to take things in. I'm so sorry you are dealing with treatment on a palliative basis. I hope you get a huge rash to prove it's working and that the rash magically goes away once you have a rest from the Erbitux. I'm crossing my fingers for you.

Hi Mungolina, you may mean "Radio-sensitizing" agents to make radiation work better. Maybe I misunderstood, but was speaking about cisplatin in what sounds like induction chemo that's in the current plan? That's what induction chemo is for too, to radio sensitize the tumors, and in some, it works so well it reduces the tumor burden significantly and or completely, so its undetectable for a certain time. I've heard it used in palliative care too, without radiation. 175mg is a high dose you had, if given in one day. I think on a weekly basis it's around 40mg, 3 large bag around 100mg, in some treatments.

I didn't have too bad a rash on my face, more so on my arms, and was itchy like crazy all over my body, especially my head. I was given antibiotics at the first sign of the facial rash, and it went away. My finger tips cracked, and had to put band aids on them, wore white gloves at night with some cream. Nurse said to put crazy glue on them, idk lol. I used dove liquid soft soap for sensitive skin, Aveeno for dry skin, Cetaphil, head and shoulders shampoo. My blood levels went down and needed a transfusion. I did hear of low magnesium levels in a long term user, but otherwise it's less side effects than some.

Anyway, good luck again.

Hi - thanks so much for the helpful reply, Paul! and for your wishes Alpaca - so Erbitux rashes are good things, ok - and I shall do my best to care for my hands and feet!

Yes on the cisplatin radio-sensitising sounds right, thanks (Oh - with my British English spelling lol). I'm pretty sure it was done over a few days' hospitalisation, with strong pre- and post-fluids for the kidneys and to cleanse the system, but to be honest it's all a blur!

Tell me, are you still being treated with the product, or how many sessions did you have? The chemo consultant here said I would be on it once a week for the rest of my life.

I don't know, I'm feeling uneasy about the extreme-sounding care (and indeed the paperwork states the protocool as 'extreme'), given that (as far as I know) the metastasis is again limited - although once in the lymphs you don't know, do you - so I guess it's preventative - but I don't know, it sounds so major. I need to have a conversation with him this week, because he did go over the actual chemo treatment very quickly, just said the product names once, and it's not written down anywhere, but I'm pretty certain he said the mix would include cisplatin again.

I do recall that, when they decided to operate the 2nd lot of lung nodules, my radiotherapist (who is divine) told me that they were badly placed for radiotherapy, being near an important concentration of blood vessels, making radiotherapy potentially lethal if there was the slightest error; hence the preference for surgery in that instance. I think they saw good hope for a full excision of the infected cells, but sadly it didn't happen.

I had various pre-treatment tests this week - well, I now know I have good hearing (let's hope the treatment doesn't adversely affect it) and that they will be able to put a new port catheter on the right hand side (which is the side I had the neck/tongue surgery, so it was a bit dubious, but is fine - can't have it on the other side as that is where I had a thrombosis on the last one, and the jugular is blocked). But I havn't had any feedback on the top-to-tail scan or heart scintigraphy. I would certainly like to know if there is evidence of any cancerous growths elsewhere. If not, well - well. I'd like to understand their decision process better.

Thanks for the feedback all.

The EXTREME protocol is a trial with Erbitux. Its been going on for a while. Here is a link to the trial with further info.

https://clinicaltrials.gov/show/NCT00122460

http://www.cancer.gov/clinicaltrials/results/summary/2007/cetuximab-head-neck0607