When John was diagnosed and met with his "team" of doctors, they all agreed that since this type of cancer is so aggressive that they wanted to blast him with everything they could from the start. The way they explained it was that the chemo would enhance the radiation. Just wondering after reading these boards for a few months why they don't always do chemo and radiation together after some people are diagnosed. Wouldn't it seem that the chance of a recurrance is much higher if only surgery alone is done?

Wanda

At least in my case, the decision to do chemo & radiation was because the alternative surgery would have such a negative effect on my quality of life. The cancer came back anyway and my medical team was unfortunately 100% correct on surgery damaging my neck, shoulder, and ability to swallow. As my ENT put it: "we tried to spare you the ordeal of surgery"
Your point however about chemo & radiation being deemed essential to deter recurrence seems valid enough to me, since when the pathology report post surgery came back, they said that without even more radiation and different chemo, my cancer would more probably than not come back a third time.

My Dr explained it much the same as Jon's did. In fact he simplified it by saying that the Chemo would criple the cells and then the radiation kills the criples.

Yes, Wanda, the chances of recurrence are higher if surgery alone was done, especially if the oral cancer is in a latter stage like mine. Surgery takes away outright the obviously infected area. Chemo would kill whatever remaining cancer cells may be in other parts of the body (since Chemo is not a treatment targetted at a certain area). Radiation, being a targetted treatment, kills cells that may still possibly remain in the infected area after surgery. At least that's how my doctors explained it to me.

Jojo,

I don't believe that the chemo given us actually kills our cancer, only the radiation will do that but I do believe the chemo weakens the cells so that they can be more effectively killed by the radiation and perhaps our own immune system. At least that's what I have been told.

I'll add my 2 cents.

I had 9 weeks of Induction Chemo (IC) followed by 7 weeks of concurrent chemoradiation treatment (CRT). I'm talking here about the CRT.

In my CRT, they gave me weekly doses of carboplatin and taxotere along with daily doses of IMRT (2 Gy per day, 72 Gy total). They tried to schedule the chemo early in the week, so it would be followed by at least 3 doses of IMRT before the week was out. The theory explained to me is that the chemo differentially sensitizes fast-growing cells to radiation; thus, the fast-growing cells would more easily die from the radiation than the slower-growing cells.

Cancer cells are among the fastest-growing cells, followed by the cells that line your mucous membranes, followed by hair cells, and then a host of slower-growing cells. Consequently, for any given dose/level of radiation, concurrent CRT is more likely to kill your cancer (along with your mucous membranes) than radiation alone. Fortunately, your normal cells (like those in your mucous membrane) will grow back in a few weeks.

Hope that helps, Rob

Davidcpa:

My understanding is as follows. Some cancer cells are more robust than others. Chemo will kill the weaker cancer cells but its not powerful enough to kill the more robust cancer cells. Consequently, chemo alone is not a "definitive" treatment for the disease.

However, chemo alone (in the form of Induction Chemo) is a useful adjunct to more "definitive" treatments (like concurrent chemoradiation). As you point out, chemo is not "targeted" to any one location, so if a few cancer cells have metasticized to some distant part of the body, the chemo will reach (and hopefully kill) these cells. This reduces the chance that the cancer will recur at some location distant from the original/primary site (thereby improving your chances of long-term survival).

Once they've used Induction Chemo to "mop up" the few (undetectable) cancer cells that have escaped to distant locations, they can use concurrent chemoradiation treatment (CRT) to attack the original/primary site in a targeted manner.

One thing about Induction Chemo: after its killed the weaker cells, only the stronger (more robust) variety of cancer cells will remain. Without further treatment, these will start growing again and they won't be competing with the weaker cancer cells for resources. So if you wait too long after Induction Chemo to begin your "definitive" CRT, your cancer will be as big as it was to start with and - even worse - it will be composed entirely of those stronger (more robust) cancer cells. So give yourself a SHORT time (e.g., 2 weeks) to recover from the Induction Chemo and then jump right into the CRT.

Hope that helps, Rob

Thanks for the inputs, David and Rob. Am definitely learning a lot here.

Questions for Rob:
If Induction Chemo is not strong enough to kill robust cancer cells, while concurrent chemoradiation therapy will, why not go straight to concurrent chemoradiation? Or is it that either (a) concurrent chemoradiation can't detect the weaker cancer cells, or (b) concurrent chemoradiation is only a targeted treatment? And assuming that concurrent chemoradiation is for targeted treatment, what if more robust cancer cells have metastacized to other distant parts of the body (which weren't killed by Induction Chemo)?

Excuse me if these questions have already been answered in previous points, you may just point me there.

Appreciate your responses.

Jojo

Hi JoJo,

All questions are welcome. Here's what I think:

Concurrent chemoradiation treatment (CRT) is a targeted treatment; it will only kill cancer cells in the region that's targeted. By doing the Induction Chemo (IC) first, they "mop up" most (hopefully all) of the cancer cells that have already escaped to other parts of the body. Yes, the IC might not kill them all, because some might be "robust", and any not killed by IC may end up causing your death. There are no guarantees here. In my view, if you don't do IC and only do CRT, then you haven't even tried to kill those few cancer cells that have escaped to other parts of the body. I think its worth trying.

But the above is merely a bunch of theorizing. I think it is important for researchers to develop (and then test, with the hope of verifying) theories as to what the mechanisms are, because doing so aids our understanding which can lead to ideas for even better treatments. But, from a purely clinical perspective, nobody cares much how it works. All that really matters is performance. Does the process lead to good outcomes? Its quite common that somebody has a clever idea for a new treatment that they think *should* work well, only to discover that it doesn't work at all - or that it works but has some unanticipated (and unacceptably bad) side effect. Would you want a treatment that cures your cancer but gives you excruciating pain for the rest of your life?

So clinicians rely on trials. Preferably large-scale placebo-controlled double-blind trials. For example, give 200 patients CRT but 100 of them get IC and 100 of them don't get IC. Then watch them awhile and see how long they live. If the patients that got IC live significantly longer than those who didn't get IC, and they don't suffer any unacceptable side effects, then it makes sense to give IC to future patients. To the clinician, it doesn't matter how or why IC gets the better result; it only matters *that* IC gets the better result.

On that basis, I'll refer you to two articles in the 25 Oct 2007 issue of the New England Journal of Medicine:

http://content.nejm.org/cgi/content/abstract/357/17/1695
http://content.nejm.org/cgi/content/short/357/17/1705

I also found this one fun to read:

http://jco.ascopubs.org/cgi/content/full/27/23/e52

But this might be easier to read:

http://www.ncbi.nlm.nih.gov/pubmed/18544437?dopt=Abstract

For the kinds of question you are asking, you need to look to this sort of technical literature to find your answers. The folks on this board are patients and patients usually don't know much about how or why different treatments work (or are chosen by their physicians). Patients can tell you their own experiences. But for the kinds of questions you are asking, all you'll get here is a bunch of well-meaning speculation (including my own). Train yourself to read and understand the technical articles... then go read them... and you'll know as much as anyone.

Hope that helps, Rob

Here's what I recollect:

Initially, I was going to definitely have surgery and radiation.

The lymph node biopsy found that the cancer had broken through the lymph node capsules, hence chemo was added.

Best wishes,

Chris

my future father in law is about to have both chemo and radiation start simultaneously in a couple of weeks. i assume that he is having what you are all calling CRT. Can you advise what the side effects of this are going to be like for him?

It may range from mild to severe depending on a host of factors including the targeted path of the radiation, the type of radiation and his personal reaction to the particular chemo(s) and the radiation. Those are things he can not control. Maintaining sufficient daily hydration and caloric intake is extremely important to how he will fare and that is something he can control.

He will lose his taste and his saliva production will most likely be severely compromised. These will recover but how much so is not guaranteed.

The inside of his mouth may blister and the outside of his skin where the radiation goes in may also blister. He may lose the hair on the back of his neck and his whiskers may fall out. The hair will return and the whiskers probably not, at least in the direct radiation path.

The chemo may cause nausea, concentration problems and both may cause total body weakness.

IMO about 10% of us get by real easy; 10% get hit really hard and the rest of us have the same rough time which in the grand scheme of things only last about 7 weeks or so ( from the 4th week of Tx until the 3rd week post Tx) and the weeks following the end of Tx are usually the worst.

thanks david cpa- why are the weeks following the end of treatments the worst? it appears the side effects you listed above would be happening while in treatment, what happens after treatment that is worse?

Actually the few weeks POST Tx will most likely be the WORST part of his Tx so at least prepare him for it. He will probably get his last chemo on the last day of radiation and his body will be naturally very weak from all the previous rads and chemo and the effects of everything, physical and mental, just seem to combine for nearly all of us to make those 3 weeks or so post Tx our worst. Some say the radiation still "cooks" our cells comparing it to a microwave after you turn it off but I don't think I've ever heard a technical medical explanation but I do know after experiencing it myself and hearing from countless others on this site, it's real, whatever the cause.

I called it walking out of my dark tunnel when I finally started to feel better 3 weeks post Tx. It was like one day I woke up and I just knew something was better, like the day when you know your cold is finally going away. Even then he will experience set back days but eventually they will give way to the better days.

Also prepare him (when he's up to it mentally) that his recovery may well take all of 2 years.

thanks david. i appreciate you being upfront and honest about what may be to come. i know theres a long road ahead.

He's going to begin chemo (Cisplatin) beginning January 4th. He'll receive 7-8 weeks of treatments once a week (on Mondays). he'll receive radiation 5x a week during the chemo treatment- is this similar to what you had? is this a normal duration of treatment, longer, or shorter than typical?

we have our wedding planned for mid september 2010. he wanted us to go ahead and book the date, because he felt it was not best to wait for him to get better to plan something. but we are waiting to officially announce it until he's at least midway through his radiation and chemo treatments. do drs typically have a better understanding of how things are going while doing the treatments, or do we need to wait until they are over to get the best decision? we want him to be OK for our wedding and told him we would reschedule it if it meant he would be there and comfortable.

No there is no way to predict anything during Tx. Heck I was more fearful of my Tx than I was of the cancer and I was one sick puppy for about 7 weeks (4th week of Tx thru 3rd week post Tx) and I was one weak kitten for about 3 or 4 months post Tx and looked like someone starving themselves. By 9 months post Tx I was back to riding my bike as if almost nothing had happened.

All of us can react differently even to the same Tx so he will be what he will be. I strongly recommend you keep after him on the calories and hydration fronts at least thru his first year post Tx. I was consuming 3000 cals a day in my first year post Tx and I didn't gain back ONE POUND.

I will say that I would have been able to fully function (in all ways and things)in my wedding 6 months post Tx so I would vote go for it.

thanks david. you are such a great person to talk to on here. i really appreciate all you help!!! i am so glad to know you made a good recovery. i am praying for the same for my family.

Palm,

Your FIL sounds very similar to my scenario, however my medical team wanted to shrink/kill my tumor before surgery so that the surgery was "less invasive".

After 3rounds of cisplatin and concurrent radiation my tumors in my face (which originally took up almost the right half of my face) and lymph nodes were well below malignant levels. My surgeon called and asked me if I still wanted to do surgery...looking back I know I made the right call in having the surgery done as it lowered my chances of a recurrance...it did however paralyze the right side of my face and severely affected my speech and swallowing.

My mom is 72 years old. She has stage IV cancer of the lower gums and a month and a half ago had surgery to remove the lower gum and part of her jawbone and at least six lymph nodes that had "caught" the cancer. Her recovery from surgery was difficult to say the least and she is just beginning to feel better now when they want her to start chemo-radiation, much like you've all described here. She's fairly determined not to do the radiation/chemo. Does anyone have any thoughts on this decision given her age and your own experiences with recovery and life after radiation/chemo treatments? I think she'd be happier with one more strong year than with two years of recovery and another so-so two years after that...

I'm sorry for all of you that have to go through this. It takes so much courage and strength. Any insight would be much appreciated.

Toetug,

The surgery may or may not have removed all the cancer and cancers that start in the mouth as you have described have proven to be difficult to get rid of even after a course of chemo and radiation. There is no guarantee, with or without, the concurrent chemo/rad that she will be cancer free but she will statistically have a better chance with it than without it. This is something that needs to be discussed with her RO as there can be many issues that will play into a potentially life altering or life ending decision.

Thanks for your thoughtful response David. We have met with the RO and MO and my mom feels she has all the information she needs from the doctors to make her decision. She was a hospice chaplain at a cancer center until she retired - the same month as her diagnosis. I guess I'm looking for the loved one of someone who chose not to go through with radiation/chemo for oral cancer and learn how they managed through the end in hospice and what types of care became necessary and how long from the time of surgery until they died. I know this is a somewhat grim search on a site that lends itself to real fighters who I admire a great deal - and if my mom were younger, she'd likely have joined you -- but, it's the reality for us right now and I have to believe there's another family out there who has made this same decision.

I can understand with your mother's background in hospice care why she would make the decision not to go through the treatment. As has been mentioned before, there are no guarantees even after going through the rigors of treatment. Has she discussed with the doctors what palliative radiation &/or chemotherapy might be available to her as the disease progresses? I was caregiver to my husband who went through the prescribed treatment and still died within a year of starting treatment. His time following treatment was very difficult as he never regained his ability to eat and suffered severe depression. From a caregivers point of view his symptoms in his last 2 weeks of life were manageable at home but could not get doctors to express an opinion on what problems I might encounter eg. severe shorness of breath, massive bleed, to help me prepare for a crisis. Fortunately I had many years of hospice experience to help me. If I were given this diagnosis myself I am not sure what decision I would make, and I hope I never have to. I hope this is of some help though I know you are looking for someone who has not taken any treatment.
Wishing you strengh and courage to face the days ahead.

Paul R, who is my boss, had a thread called 'Refused All Treatment' that chroniciled his mother's travels down this path. I think she lived a year and a quarter. I believe she was 72 when she was diagnosed and in otherwise poor health. She had watched her husband die a terrible death from pancreatic cancer after going through all the treatments and didn't want the same for herself. She refused the surgery also so there was no way she wouldn't die. I tried to find this thread for some else recently and couldn't. If any of you that are better with this search engine can find it, please post the link.

What do the doctors say? Do they think they got it all or do they feel radiation is REALLY necessary? Chemo only enhances the radiation and can be skipped. I didn't have it because they felt the side effects were too great for a 5% extra chance at no reoccurence, but that was 1997 and who knows what chemo they were using then. Radiation however is the thing that leaves the disasterous side effects that one may never recover from. At 72, I don't know. I think I might just take my chances and wait to see if I got a reoccurence. Tough call.

Take care,
Eileen

Granted I didn't have any surgery and I was 14 years younger and otherwise in excellent health and physical shape BUT even though the concurrent chemo rad kicked my butt and I would not want to have a do over, I am not left with any side effect that is really anything other than a nuisance. If she can handle 7 ugly weeks and it's recommended, I would certainly opt for that vs the unknown without said Tx.

Just one example.

Here is the link to Paul R's thread:

Refused All Treatment

Thanks Deb for finding it.

Remember while you are reading this, that his mother refused the surgical treatment also so she knew she would die of this cancer within a not too distant future. Your Mom has opted for surgery so she MAY be able to take a 'wait and see' on the radiation depending on what the surgeons and oncologists think.

Take care,
Eileen

Thank you all so much for your responses. I will check out Paul's thread. My mom's surgery went well, but there were extra-capsular cancer cells outside a few lymph nodes in her neck, so the doctors really believe radiation is necessary to kill it all. I appreciate the support from others who've made similar decisions. It seems kind of like a waiting game now. But she's feeling stronger every day out from surgery and actually went bowling with me and the grandkids last weekend...those are the moments she's afraid to lose by going down the further treatment road at this point.