Hi,

I would appreciate any input from others who may have experienced conflicting input regarding chemo. By way of background, I recently underwent tongue resection and neck dissection. My signature below provides some detail regarding my pathology results.

My surgeon suggested that I will need both radiation and chemo. However in meeting with a local oncologist at OHSU (Portland, OR) he believes that only radiation is sufficient. Since these are two conflicting opinions, I'd appreciate any suggestions on how to break the tie. Needless to say I am happy if I do not need chemo, but at the same time I want to go through it if it increases the odds of long-term success.

Thanks in advance for any comments or pointers. I love this forum and hope to contribute when I am through my treatments.

Hi Chetan

My husband Steve had Rads and Chemo. He got 3 x Cisplatin over a 7 week period. It was described to us as the chemo helps the radiation. They compliment each other. I wish I could remember the exact words but in a way i'm happy to say it's been a while since we heard the explaination. Steve is 1 year and 9 months cancer free from a stage 4 diagnoses, no surgery. Not sure if the chemo had any major part to play in this but I do believe that his treatment plan of rads and chemo are part of why he is still going as strong as he is.

I'm sure the other guys here will have some more information on chemo than I can offer. Whatever you decide to go with I wish you the best.

Chetan,

The chemo boosts the effect of the radiation, i.e. adds more killing power (most est between 10 and 20%) and if I were you, considering your cancer is HPV negative, I would opt for the chemo

Chemo is the smaller of the to devils by far! It basically causes nausea and a little more fatigue - it was the easiest of the two. It really can't hurt and may help... I'd do it.

This is an aggressive cancer and you should respond accordingly. You definitely will be able to have chemo again later if you should need to and I guess my question to you is:

"Why would you not take advantage of very option to kill the beast?"

My theory is: Hit me with your best shot. It won't be fun, but you will get through it and any extra boost you can get is exactly what you should do.

Remember - not all doctors are up to speed. Too often I have seen doctors tell patients what they want to hear - to the patient's detriment.

Hugs

Donna

My husband Earl also had a Stage 4 diagnosis. He underwent both chemo with cisplatin and radiation for six weeks. Knock on wood, it's been three years since the diagnosis and he is doing great. Err on the side of caution and go with the chemo. The discovery of cisplatin's cancer fighting qualities occurred by a serendipitous lab observation. Read about the discovery by Barnett Rosenberg here:
http://en.wikipedia.org/wiki/Barnett_Rosenberg

Connie

Wendy, David, Cheryl, Donna, Connie,

Thanks very much for sharing your thoughts. I agree with being aggressive now, and am scheduled to meet with a MO tomorrow. I will let you know what he says. In the meantime, I was wondering if any of you experienced extra capsular extension in the nodes. Apparently the reason my RO did not think chemo is needed is because I had no extra capsular extension.

On another note, my RO is planning to radiate both sides of the neck (because two lymph nodes), even though only the left side had any evidence of SCC. Based on your comments above, I am assuming that a more aggressive option such as this is better, but thought I'd bounce it off you.

Thanks again for your valuable insight!

Best Regards,
Chetan

Hi, Everybody,
I also had a neck dissection and a combo of radiation and chemotherapy. My docs also wanted to "throw the book at" my cancer, and the chemotherapy was the least of my problem. I am not sorry that I had both. Had my 5th clear scan last week. Yea!

Chetan,
I am one of the few you will talk to, apparently, who got along worse with chemo than radiation, at least until the last few days of radiation. Yes, I had microscopic extra capsular extension. It was the correct treatment, I believe. After a chemo weekend (I had them on Friday evenings) I would say that I hoped any cancer remaining following my surgery would have as bad a time with Cisplatin as what I was having! They like using chemo with rad because in general it does raise statistics for beating your cancer.

But extra capsular extension is not the only good reason to have chemo. Multiple lymph nodes involved, perineural involvement, and location of the lymph nodes all figure into it as well. If your cancer is more aggressive and less than well differentiated, then chemo is probably going to be valuable because chemotherapy will kill those more aggressive cancers better than the less aggressive ones. This is what the MO told me, and I have read this also.

Hope this helps you.
Best,
Anne

I'm just going to second what Anne said- do what you can - there are no guarantees but you want no regrets - good luck tomorrow !

Hello All,

I wanted to update you that I met with a MO yesterday and have decided to go with chemo with rad.

Thanks for all your valuable perspectives and support!

Best Regards,
Chetan

Good decision. So when does the fun begin?

And yes, we are here to help you through it. Even if it just means that we empathize from a distance, but who knows, we might even have a tip or two to make the chemo/rad decision a wee bit easier. Good Decision.

Donna

Absolutely... What pandora / Donna says - good luck!

Chetan

I agree with all the other posters who unanimously recommended getting chemo. If for no other reason than if the cancer comes back you will always ask yourself: what if you had done chemo.
I've had full chemo treatments twice now and while neither was a picnic, the carboplatin was much easier on me than the Erbitux.

I can't remember if I posted this advice to you before, but even if I did, it bears repeating. Get a TSH (thyroid hormone) blood test to get your TSH level number. Get and keep a copy of that test result with the actual number. Best case scenario: you won't need it. Worst case: you need TSH hormone but since the lab ranges are still using 20century data instead of 21st century, your doctor says your range is normal and ignores your symptoms of fatigue & cold.
Luckily for me I did have my pre radiation numbers so I could go to a endocrinologist who understood that you want the TSH exact numbers to be the same after TX as before, not just "within range".
Have a nice Memorial day
Charm

Hi Charm, Cheryl, Donna, David, and everyone else,

Thanks for the support and tips long distance. I am sure I will need it. Charm, I am actually scheduled to see my PCP tomorrow to do a blood draw for the thyroid test.

On an unrelated note, my RO also suggested that radiation can affect the carotid arteries (he said something about possible narrowing). I was curious if anyone had done anything about this either before and/or after radiation? After surgery on 5/6/11, I passed out on day 4 after surgery for reasons unknown. All vital signs were fine. This also happened when I had another surgery in 2008. All docs discounted it as a syncope reaction; however one also suggested that I get my PCP to do an ultrasound of my carotid artery. I was curious if anyone has had or heard of any similar experiences.

My left wisdom teeth were removed last week. The RO is waiting for it to heal and get dental clearance before he will provide a start date for rads. I cannot wait to get it over with; but know that the 7-week treatment period (and possibly several weeks thereafter) is not going to be fun.

The RO also suggested that he does not recommend that I put in a peg ahead of time. He said that if he feels that I am losing too much weight, then he will change his mind. Is this approach OK?

Thanks very much for your comments. They are truly helpful not only to get through the treatment with as few scars as possible, but more importantly the moral support from all of you definitely keeps me going...

Have a wonderful Memorial day!

Chetan

Chetan

Good to hear you are on top of the TSH, but again, demand a copy of the test results for yourself with the actual number. It's good to have in your files.

As for the carotid artery, while I never had any issues, my cardiologist insisted on doing an ultrasound of my carotid on the left side where I had all the radiation and surgery. But this was only after he found out I had radiation twice and since I was his first patient who had over the maximum radiation in the same area, he wanted to be sure. It turned out just fine, with zero blockage. So, IMO, no downside to getting one.

Last but not least: you are too new a member to remember the heated PEG wars on this forum. In retrospect, I was careless with my adjectives which triggered equally fervent opposition.
Bottom line is that oncology doctors are divided on this issue. No surprise that most OCF members advocate exactly what their doctors told them. My CCC doctors all had the same opinion that your RO has: a PEG should not be routine, should not be put in "just in case" and almost all of their patients went through the radiation treatment without a PEG and had no complications or dehyradition. That was my experience also.
However, some doctors are adamant that their patients get a PEG whether they need it or not, and some doctors refuse to treat a patient who does not get a PEG. They stress that it's a simple procedure to put a PEG in.
We all need to trust our doctors, so the OCF members whose doctors are Pegophiles (oops my bad bias) are vocal advocates of getting the PEG. They will regale you with posts about how the PEG was so good and they could not have survived without it. My caregiver wife would have liked me to get a PEG and in that she seems to reflect most caregiver's opinion.
Patients tend to differ however.
IMO There is no right or wrong decision on a PEG. You are not "tougher" if you don't get a PEG, but for many of us there was a deep psychological satisfaction in not letting this cancer take away our swallowing and eating by mouth. It tends to show up mostly in senior alpha males like myself, Michael Douglas, our own DavidCPA Maybe it's all those movie scenes with the feeding tubes on terminal or dying or major injured people, but for me personally, not getting the PEG was the right choice.
so bottom line, I think your RO's position is just fine about "wait and see" on the PEG. Bulk up now. Even with a PEG, people lose weight. I did massive muscle training the three weeks right before I started radiation to bulk up to 177 pounds and I still went down to 140 but since I used to do marathons when I weighed 125 pounds, it was within an acceptable range for me. (I'm 5'11")
Charm

Chetan- your RO's approach to PEG placement is definitely ok! That's the approach that I took and I just have a few of my own toughts to share: I was through 4 weeks of chemo-rad when my swallow gave out on me - the swelling in my throat increased to the point that all fluid was trapped in my throat while swallowing (rather than going down) and then squirted back up my throat after each swallow causing choking. That was a Sunday night and from that night on I couldn't even swallow water - I saw my MO the next morning and was scheduled for a PEG on Wed - I had to go to the chemo floor for IV hydration that mon and tues to keep me going til the PEG could be placed. I was pretty bummed about it all - I had thought I was doing so well - making it through week 4 with only 2 weeks to go - I had already thought in my mind that I was going to make it without a tube!

My advice to you is to increase your awareness of your swallow now so that you can be in-tune with changes - the primary reason that MD's advocate for PEG beforehand is that it is a certainty that you WILL have trouble swallowing - the uncertatinty is to what degree - will it be to the point that you can't swallow at all or just to the point that adequate nutrition/hydration is a worry.
The concern with getting it midway is that you're compromised by treatment, you're nutrionally compromised (otherwise you wouldn't be scheduling a feeding tube) and it's hard to jump another hurdle in that condition. All that being said, knowing now that I did need the tube - I still wouldn't have opted to have it placed before treatment - for me, the shorter amount of time with it in place the better.
Good luck to you- you're a strong and intelligent Patient!