Hello,

My husband had a recurrence of his tongue cancer this past September. It's taken over his tongue but thankfully it hasn't metasticized anywhere else. We were told his doctors want to do induction chemo for three months and then do an evaluation to see if the tumor shrank enough for another, less invasive surgery. We were told the two chemo drugs he would be given were proven very effective with head and neck cancers. Unfortunately, Norman's oncologist at MD Anderson was French and very hard to understand. For the life of us, we can't recall the names of these two chemo drugs. Those of you who've gone through this, any thought what the drugs might be and if so, their side effects? Any information would be greatly appreciated.

Your question is not an easy one to answer. It could be any number of combo of chemos. There are soooo many!!! Each one has its own list of possible side effects and after effects. To name a few of the most frequently used for OC... Erbitux (Cetuximab), cisplatin, carboplatin, 5-FU, keytruda (Pembrolizumab), Opdivo (Nivolumab). You will find a link below that is to the main OCF pages. I think you can find many more details about chemo there.

I suggest calling your husbands doctor's office and asking them about what the doc prescribed. It should be written in his chart. You may even find it in the patient appointment contact summary. Usually my doctors give me a summary print out of everything we discussed and what my doc recommends when I check out.


Main OCF site--- Treatment, chemo, etc

Christine is right, check with your oncologist. I try to get copies of everything to have for my records, although I slacked off a bit on the dr notes from my office visits, but at one time I did. Once i needed to fax over 400 pages of records for a consult at a major cancer center, which was a pain to gather in a few days as time was of essence.

I posted this response a few weeks ago to a members question about Induction Chemo:


Yes, there is a difference between induction chemo and other chemo therapies. It's a combination of three types in "High Doses", sometimes two, which is the original, PF, Cisplatin & 5-FU, and the most popular type of induction chemo being TPF; Taxotere, Cisplatin and 5-FU. There are different variations to this type including different taxanes, platinum based chemo's, and addition of Erbitux or its substitution for another chemo, and their acronyms.

I had neoadjunct induction chemo back in 2009, and there was even less info than there is now. I didn't even know the chemo's that I was going to be getting. It didn't work out quite well for me toxicity wise, and only had 5 days of it, but it killed all my cancer; primary and two lymph’s, almost me too, and have read extensively about it since 2010 after not getting many answers as to what happened, and why. I've posted many times after joining in 2012. It's concept is not new, probably about 40 years old, and originally used in studies for organ preservation for the larynx by the the department of veterans affairs.

It's controversial, and still is, has high toxicities, and probably around 50% of the patients never finish the full treatment, some not being able to continue to have curative treatment that usually follows or surgery, but it works well in reducing tumor size, distant metastases, and in some cases, completely, which was my case, but it doesn't last. Usually in a year or less the tumor returns, although my tonsil tumor never did return, but I did have radiation over a year later after my treatment was stopped, which is the time it took me to partially recover, for a recurrence 8 months later.

When I had mine, you were hospitalized for the week. They gave you 75mg Cisplatin, 75mg Taxotere on day one, and a continuous infusion of 1,600mg 5-FU for 4 days, sometimes it’s 1,000mg a day, and other medications to help reduce side effects. Now they may do it as an outpatient, and have the 5-FU infused via a fanny pack. Regular chemo with Cisplatin weekly is 40mg or the big bag every three weeks is 80mg, so there is a difference right there in the amount of chemo in one week.

Many people have had different experiences than mine, although I can’t completely knock it as I'm here. I think it's best in select patients. My ENT said it was rough treatment, and thought it may not be suited for it, but laughed it off at the time, and MO said like General Patton, I was a strong young man, so I said, "bring it on”, but wouldn’t say that now!

I understand there is a 5-FU antidote now in cases of overexposure, adverse events called, VISTAGARD.

Here is an older article that offers more information, I have dozens, many posted if you search here under "Induction Chemo". Another doctor that used it extensively in trials is Dr. Marshall Posner from Mt Sinai Hospital, and where I had mine, if you look up his articles too.

http://theoncologist.alphamedpress.org/content/15/suppl_3/3.full.pdf

Here is another article:

http://ascopubs.org/doi/pdfdirect/10.1200/JCO.2014.56.7685

Toxicities will depend on the type of chemo’s used, in addiction too type of combinations, the dosage amount, frequency rate, infusion rate, age, patients condition, co-morbidities.

Thank you for your responses. I now have a list from his oncologist. These are the drugs they want to use. Erbitux, Taxotere, and Cisplatin. I'm scared. They cavalierly say a side effect is death. I'm so scared by what I read and heard I'm ready to let Norman go to Tijuana and get laetrile rather than these horrible things. Has anyone taken these drugs? Survived them? Went into remission?

Trisha,

At the check-in counter of the Chemo Unit of our hospital there’s a sign which says something like they know a lot of people are afraid of the side effects of chemo, but these days there are powerful meds for dealing with the nausea and the discomfort and so the side effects are minimized.

To an extent that is true. The hospital also advise the patients to “get ahead of the curve” which means that they should use the ant-emetic like Zofran when they start to feel queasy and not wait u til they are actually vomiting.

I don’t know if this can reassure you. I just find the doctors a bit insensitive in making that joke — the comeback I would use would be “the side-effect of living is death.”

Trisha,

I've taken all of these chemo's, survived, and thriving!

I see their substituting the 5-FU with Erbutux (cetuximab), which I heard about, and the acronym, CPT, which may be better because 5-FU has its its own nasty toxicities. Erbitux is not really a chemo, it's a targeted therapy, a monoclonal antibody that works to inhibit the EGFR, Epidermal Growth Factor Receptor.

What's funny, may not really, but Martha Stewart went to jail because of the Erbitux stocks way back when, so every time I see her on TV I think of Erbitux.

Yes, there is very rare risk of allergic reaction and heart attack with Erbitux, usually during the first or lesser the 2nd dose, so they will monitor you very closely, and anything out of the ordinary to let them know. He'll probably go forchemo orientation before having any infusions with instructions on care, contact numbers, etc. The first dose may be a loading dose, and thereafter a lesser dosage. That's at least with the weekly dose I had with Taxotere.

Erbitux has several side effects, most notably is the facial and body rash, which should not be used as an indication it's working, but is rather its a side effect of an EGFR Inhibitor. There are medications for this, which can help manage the rash, and OTC products to use for body care. Another are mouth sores, mucocitis, can be worse than Cisplatin.

There's plenty information on Erbitux here, which I know I posted about, as well as the other chemo's. if not, I have some.

I wouldn't consider Tijuana, even with all the cancers I had! I've read nothing but bad things about these places, and really have no proof anyone has been cured from their sometimes toxic treatments. Many have been closed down due to the fraud, and death, but I guess some are able to avoid this by one quark or another, even in the U.S.

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

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

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

Trisha,

I was just reading through OCF's current news, and saw a timely article about Laetrile. I thought it may interest you, and shed more light on this toxic substance.

https://pdf.printfriendly.com/pdfs/1512793279_f67e22/download

Paul, I think Erbutix we were told even if Norman responds to chemo this Erbutix he has to take two weeks for the rest of his life. When I asked 'does that make it like insulin' I got a very patronizing look and silence for what I thought was a reasonable question. Paul, thank you for responding to us! Bless You.

My questions may seem stupid, but I'm not a healthcare professional. I was hoping on this site patients may give me a more honest answer than the docs do. This chemo -- we know it's not supposed to be a remission. Is it possible, even so, the tumor might shrink and he won't be in excruciating pain? (Docs said that's possible but I'd really like to know if a patient experienced this.)

Trisha,

I've heard Erbitux, and other targeted therapies, being used long term as palliative care or chemoprevention. I believe it has to be used at least 6 months, so I read, to be more effective. I was going to take Tarceva, another targeted therapy and EGFR inhibitor, due to all my recurrences, as chemoprevention, but my doctor eventually said it wasn't for me, and I read disappointing findings with that since for Chemoprevention, as they call it, even though there is no sign of cancer. Long term, Erbitux dosing may be different, smaller, and heard side effects may become less.

I know what you mean like insulin, but the doctors may be more technical in classification of drugs, and how they work. Btw, is your husband a diabetic? I am, and my numbers were sky high before cancer, but now it's more manageable probably due to the dramatic weight loss.

As far as pain, is it being managed by medication and doctors? There's no reason to tough it out as it can interfere with many daily actives, sleep and health. Yes, it's possible to have decreased or pain eliminated as the tumor shrinks, it has happened to me, but as with all things, there are no guarantees. There is pain management, who I see now for my back, and another time at the cancer center with my jaw/teeth issues, and were very helpful. I took pain meds the entire time I was in treatment or had surgeries, and longer from my various cancer doctors, but being out of treatment four years, I had to see an outside pain management doctor.

We don't really use the term remission in squamous cell head and neck cancer, at least that I heard, and only seen it used once or twice in recent medical literature, but is used numerous times by patients/caretakers on other groups, but I know what you mean.

I hope this helps!

Trisha, I'm late to this thread, but your questions are NOT stupid. Sometimes doctors or nurses can make us feel that way, but no question is a stupid question. (Well, not most of them. And no medical question, ever, when it pertains to you or a loved one.)

When I had my chemo and radiation, they had some add-ons that were supposed to help me deal with the treatments. I, being the obsessive type, read over the paperwork while they were hooking me up and found some of the fine print disturbing. One of them very clearly said, "Do not give to patients with a good prognosis." The nurses told me they had no idea why it said that. I told them that, in that case, I wasn't going to sign off on it. So they didn't give me that. Very simple. I wonder to this day if they ever got an answer to that question, or if they hid that fine print from other patients, or what. Wish I'd had the presence of mind to jot down what the thing was, so I could do research later, but I was also post-surgery and scared and all that, so my brain was mush. But it was still a fair question.

As for the 'death' thing ... half my meds probably have that as a side effect somewhere. Falls under allergic reactions, probably, when it doesn't fall under a black box depression warning. It's not something doctors should joke about, but it can be an issue just because of the nature of medications. If they can't give you a reasonable answer, they need to do some looking or at least some comforting. I just added a new med to my allergy list ... Zofran, the magic standby for everyone's nausea ... and when I did some reading on its side effects, they are pretty ghastly. (Don't go there.) It's a wonder drug for most folks ... but it's now one I can't take. Oh well. But it just goes to show, what it might do and what it usually does can be totally different things.

((hugs))

Kristen

Thank you-- I didn't know the oral cancers don't say remission. Is it more about learning to live with it?

I tried to read your article, but it said it was removed.

Trisha, which link was removed? If it was one of OCF's pages, newer info could be available. The main OCF site is constantly being updated to ensure the most up to date, relevant info is available.

Hi,

I think Trisha was referring to my previous posts, and attachments. All of them i could open again, except the one from OCF News Feed about Laetrile. I looked on google for the article, and found it, which is attached below, but could have looked on the news feed from several months ago.

As far as head and neck cancer remission mentioning, which we don't necessarily use, it's no big deal, and know what that means, but our cancer is not something to get used too. Either you have cancer diagnosis, going through treatment, and cancer is then cleared or not through treatment or reached 5 year mark to be cancer free, and unless all treatment failed, and no other curative treatment is possible, and only palliative treatment is available, then that would be something one has to get used to or deal with.

I think that can be far off for most cases as more doctors are experienced in re-treatment. I'm lucky, and happy to say, I have been treated multiple times, and clear for 4 years now. At 5 years, i even forge the date, I will be considered cancer free, but I don't think about that often, and will always be a cancer fighter.

http://oralcancernews.org/wp/this-m...reatment-and-ended-up-poisoning-himself/