Husband diagnosed 12/19/08 with SCC BOT T4N2cM0. Met with treatment team today. Treatment plan is radiation and chemo as soon as teeth extracted. We were told if we traveled to major city treatment would be 6 1/2 weeks, first 18 treatments once per day, after that treatments would be twice a day. they want to pursue aggressively. Alternative is to receive treatment in our hometown but likely the treatments would be 8 weeks with 1 treatment daily. Anyone know the pros or cons of this? Our initial reaction is to go to major city as it sounds like more aggressive treatment.

Cherly,

If possible get to a CCC (comprehensive cancer center), I'm not sure of the closest one to you. You probably should get a 2nd opinion there. There used to be a link from the main page that listed them.

Why are they extracting his teeth? Are they in bad shape? There are many here, including myself, that didn't have any extractions. We must be vigilant about our dental hygeine, but that is a small doable for me.

Are the radiation treatments IMRT? My treatments were 33 once a day treatments with the weekends off. There are several here who had a similar to schedule to what is planned for your husband. Chemo was once every 21 days. Many get chemo weekly, what is your husband's chemo schedule?

Hope this helps a little
tim

This is called fractionated radiotherapy. It varies from place to place, but it is the standard. Actually just the once a day 5 days a week is a fractionated delivery in itself. Gary will hopefully post to this thread since he is the radiation expert around here.

Cheryl:

Welcome to OCF. Best place for treatments would be a CCC as Tim mentioned. I traveled 45 minutes each way for my treatments to go to a better center. Where would your husband receive the best care? Where are you both more comfortable with? Is either facility listed as a top cancer center? Are you able to travel for treatments? There is a list on the main OCF pages of the top hospitals.

As far as teeth go. There are some dentists on the forum who hopefully will be able to help answer questions about that. Personally, Ive suffered from not having my teeth all removed prior to treatments. Now Ive had to go thru alot and struggled with eating due to not having them removed first. If teeth are questionable, then its best to take care of it now before treatments and possible complications arise later.

Best of luck with your decisions.

Thanks all for the fast replies. We won't know the full plan until next week. We are in east central Indiana - after reviewing the CCC's posted - we aren't close to any. Our option is treatment in our hometown of approximately 40,000 or to go to Indianapolis (1 1/2 hr. away - read more specialists/better hospitals) We'll make the drive. H's teeth are in bad shape. We weren't surprised that they need extraction first. Treatments will be 5 days on, 2 off. Don't know any more than that about the plan at this point except for the two treatments each day during last half of course of treatment. I just had never heard of two treatments in one day before. The big push seems to be that this has moved slowly right after diagnosis due to the holidays .

Obviously cancer is not to be taken lightly. But you would be surprised at the number of people that I talk to every week that are near major NCI comprehensive cancer centers (within 2 hour drive), and choose to go to some small regional hospital because it is closer to home. Letting geography dictate your treatment center is a huge mistake. This is something that, within your abilities to be seen by them, you want to be with the best of the best, in a multidisciplinary dedicated cancer center. Cancer usually only gives you one chance to beat it. Here is link to the top 50 cancer centers in the US. Link

Brian is right, go to the best treatment facility and Drs you can. I drove 70 miles every day for 7 weeks, to go to a top 10 facility and almost went to Houston (1,000 miles). Would have gone anywhere to increse my odds for survival. Most people on this site went for second opinions. I did Rad once a day for 35 days (5 on/off 2).

Check out #34 on the list, it's in Indianapolis. I live in GA and traveled to TX. Wasn't easy, but as Brian said you mostly only get one shot...

Cheryl,
Radiation is given in fractions for 2 reasons: 1. A total dose (like 70Gy), all at once, would be fatal and 2. to allow the bodys normal cells time to recover and repair themselves.

A typical presciption for RT (radiation therapy) would be somewhere in the neighborhood of 60-70 Gy for H&N cancer. This would be broken up into fractions of 1.8-2.0 Grays (Gy)/day. Some treatment protocols call for twice daily treatments. One in the morning and one in the afternoon would be typical. Combined they still would not exceed the maximum of 1.8-2.0 Gy. You can roughly calculate the number of days in treatment by dividing the total number of Gy by 2. It will not change the number of days whether you opt for daily full fraction or daily X2 1/2 fraction. The latest NCCN oncology practice guidelines recommend the twice a day plan for many H&N cancers. 2 treatments per day is becoming more common and it's efficacy has been proven. Others here have had twice daily treatments.

This is a primary treatment plan and if it were me, and I had a T4N2cM0 staging I would go to a CCC or NCI Cancer Center as others have suggested. You need to hit this with the best treatment and expertise you can, particularly with a coordinated medical team. Others here have forgone treatment at a CCC for the convenience of not having to travel and they died. Some CCC's can arrange housing for you. I traveled 60 miles a day to go to a CCC in horrific bay Area traffic (some of the worst in the US).

I am not trying to frighten you but this is an aggressive, ruthless cancer and you don't get many chances to combat it. Radiation Oncology is like any other specialty and some are better than others. H&N cancers are relatively rare, in the scheme of things, and that's why your odds will be substantially better at a CCC where they see a lot of H&N cases. I sometimes use the analogy would you bring your BMW to a Toyota dealership for service?

Incidentally, the extractions need to heal first before they will start treatment. It was almost 2 months from my original Dx to when I actually started treatment- and they fast tracked all of my labs and scans.

woo hoo! The hospital we are using IS #34 on the link Brian posted (ty Brian!) and thanks Gary for the scoop on the radiation. We, like so many others, are newbies at this and it is my nature to read everything I can get my hands on and question endlessly. Thanks again - you guys rock!

Thanks Cheryl and that's exactly what we do best here - is answer questions. We also try to give you information that facilitates the questions that you will ask the doctors as well. We strongly believe that being your own advocate is the best way to go. Be sure to take very thorough notes at the appointments.

One more thing that I wanted to add about how RT works is that is alters the DNA of the cancer cells so it can't replicate itself and it just dies off. Normal cells are damaged as well but they have the ability to regenerate. This is another reason why RT is administered in fractions.

Chemotherapy should also be on the table as well. It is typically used as an adjunct to RT and can give as much as 15% additional 5 year survival rate. Cisplatin is the most commonly used and there are 2 types of treatment plans that we hve seen. Once every three weeks beginning with the first day of RT and weekly smaller doses. Chemotherapy, by itself, is not very effective in H&N cancer treatment but it has a good synergistic effect with RT.

The front end of this process moves very fast and many decisions have to be made in a hurry.

Tell your H to eat everything in sight. All his favorite foods, fatty or not. Once he starts the rad he will loose his taste and his mouth will get to sore for solid foods so now is the time to stock up as it were. If he's like the majority of us, he will not regain his taste for many many months post Tx.

BTW I went to 5 different docs before I settled on a CCC which was 45 miles one way for my Tx. I pretty much drove myself except the last few weeks.

What did they say about chemo?

Check with the American Cancer Society...many of the CCC's have an ACS facility (Hope Lodge) on the premises that provide housing free of charge for the duration of your treatments. The one we toured at Moffitt in Tampa, FL was very nice...suites with living and bedroom area and nice bathrooms....several kitchens downstairs in a community setting, library, outdoor area, etc. There was no charge and no income questions...the only requirement was that you had a caregiver live with you in the "apartment."

Deb

We will be getting lots of info next week from the hospital - will be there to finalize case plan early in the week. I am fortunate in that I only work part-time as it is and my employer is willing for me to flex my time as needed or just be gone. We are a small office and I will be reachable by cell so we're just gonna do what we have to and wing it. H is on medical leave from factory as of today. The treatment center is about 75+ miles from us and I'll be driving H (more than driving, I'm the one who will be pushing for answers and asking questions - 30 years in a law office does that to you We needed to pick a center within driving distance as we have guardianship of 2 grandkids, 7 and 4. We've rounded up our local support team (friends and family) to pick up the slack and given how fast this has moved we're in pretty good shape. Thanks for all the great support - I'm off to stuff H with lunch! And thanks for the info on radiation - I like to see stuff coming rather than be blindsided.

It is of vital importance that you have a coordinated medical team, consisting of at least an H&N surgeon, MO and RO. A tumor board should also add a great deal of reassurance as to putting all of your options, risks and benefits on the table. Having 3 doctors across town from each other is very risky business - not recommended.

You are wise getting a support team built up now. Churches are great resources for this kind of thing as well as the local ACS chapter. ACS will reimburse for mileage over 60 miles/day to a certain limit. Sometimes they can provide drivers as well. Have some back up drivers lined up. Take care of yourself and allow people to gift you with their help. Find people to give you some respite care as things progress. A cancer support group and/or social worker may be able to provide additional resources as well.

We were fortunate that our local ENT referred us to H&N clinic in Indy. At the appointment H was seen by two surgeons, a dentist, radiation oncologist,and various students, residents, etc. Entire group then met to review and suggest tx plan. Radiation oncologist who was there will be managing tx, follow ups by H&N will be done in 4 weeks after radiation/chemo starts to determine if this treatment course is working.

After the Tx (assuming concurrent chemo and rad) begins H will not need a driver for at least 2 to 3 weeks, perhaps longer as each of us can respond differently. My numbers only but I say it's like a bell curve where 80% of us are OK for weeks 1 thru 3 and then we get progressively worse during weeks 4 thru the end of Tx (usually week 7) and then we are really bad for weeks 8 thru 10. Then a slow and very long recovery finally begins as we walk out of our dark tunnel. The other 20% is split with half really bad almost from day 1 and the other half hardly affected throughout Tx.

Have they mentioned which chemo(s)they plan using and how often?

Hi, I was wondering if I can get recommendations for the best topical treatment for neck burns. Richard is using 100% aloe vera gel from Walmart. I've seen the gels at the health food store and wonder if the quality is better. This one is made in the USA and is certified by the Aloe Science Council. What about Aquaphor, RADX, or Radiacare gel? Also, did anyone gargle or rinse with aloe vera juice?

Most of us here used prescription creams from the radiation oncologist. For me aquaphor didnt work so well. Beta-Val cream worked the best. Make sure not to have creams or lotions on your husband prior to radiation. I would plaster it on in the car on the way home for treatments. Surprisingly I have no scars at all, even though at the worst my neck was pretty bad.

Never heard of the aloe vera juice. Most people here stick pretty much to the Biotene products. They dont burn your mouth and they have everything from dry mouth spray, to toothpaste and gels.

I didn't have much of a "sunburn" from the rad but Aquaphor did the trick for me. Like everything thing else associated with this Tx just try until you find something that works for you.

Biafine, a prescripton cream, did wonders on my burnt neck and is also supposed to help pevent radiation burn. I wasn't given it until the end so cannot attest to that. Aquaphor did nothing for me.

Take care,
Eileen

My medical team at the CCC said I had the very worst radiation treatment burns they have ever seen - in part because of synergy with the Erbitux. I really hope that the standard ointments work but all of them(aquaphor, radgel, burt's) gave out on me midway thru treatment. The radiation nurse recommended Vigilon which is a hydrogel dressing. (buy it from any medical supply store). They felt soooo good.
Techie info: Hydrogel dressings are cross-linked polymer gels that provide and maintain a moist wound environment. By increasing moisture content, hydrogels have the ability to help cleans and debride necrotic tissue. Hydrogels are non-adherent and can be removed without trauma to the wound. Additionally, hydrogel dressing have a soothing effect that promotes patient acceptance.
Bottom line is to monitor radiation skin damage closely and focus your medical team on helping to heal it.

Hi, I would like more personal responses about what anti nausea meds worked the best. Emend has been mentioned and I did some research on this drug. It's used for prevention of nausea the day of treatment and two days after. David, I know you recommend this drug, but did you need to take anything after the chemo treatments? I'm obsessed that we do everything possible to prevent this awful reaction to the chemo. Compazine doesn't agree with Richard. The zofran every eight hours and ativan at night seems to be working. Any feedback about this topic would be appreciated. We're working really hard to keep his weight on because we know it will only get worse. Thanks, Geri

Geri,

Emends worked on my first chemo and I didn't need anything else. By the time I got my 2nd chemo Emends barely worked and they gave me a few different ones to take and I barely made it without nausea. By the time of my 3rd bag I was pretty nauseated and nothing was working pill wise so I really became nauseated and nothing made a difference. To me the nausea was the worst part of my entire Tx. It was only when I decided that taking no meds was better than all the side effects of the meds that I began to be able to keep food and water down and improvement followed.

As far as lotions and creams the Aquaphor took the sting out for the first couple of weeks, but close to the end nothing seemed to make it feel better. I was given the prescription Biafine and instructions to do Domebroro soaks, but my neck was weeping badly. Has your radiation team recommended anything? They should also be able to supply you with samples until you find something that works the best. Don't be afraid to ask, the suppliers give them tons of their products to hand out to patients.

I can not help with the anti nausea drugs. I was so very sick all through my Chemo that it did not matter what I took. If I could stay asleep I did not get sick, but then I also dehydrated. I spent almost the entire time I was on chemo in the ER or admitted to a room.

Patty

I have a question about something the RO brought up. She said that if you lose to much weight the mask won't fit tightly enough. By what I've read it seems that everyone loses weight and some people extreme amounts. Don't they have a mechanism for tightening the mask down more? They must be able to adjust it somehow. That took me by surprise because Richard lost a few pounds from being so sick. He's eating a lot more and feeling better. Thank goodness he put on some extra weight before starting treatment.
When they weighed him at the first radiation consultation, he had heavy hiking boots on, a huge set of keys, wallet, cell phone, etc. Typical man! It's just the opposite for women. We take as much off as possible before being weighed. So they are going on the heaviest weight. When they weighed him on Thursday, he had none of that stuff in his pockets and had been sick, so was down a few pounds. I'm just so paranoid about the least little thing and I'm so thankful that one week has already passed. Thanks for any feedback. Geri

Well, Geri I know that the purpose of the mask is to hold your head very still and in the same position for each treatment, so maybe if you lost a lot of weight you would be able to move around inside of it and risk not getting the treatment to the exact spot that they wanted it o go to.

Just what I think -

Patty

Geri

Good news, bad news; Bad news first, On anti nausea drugs, my experience was similar to David's. IMHO: Zofran, comprazine, promethazine and prochlorperazine were more trouble than they were worth and I ended up with three quarters of each bottle left over. I hope your experience is better.
Good news: At my worst in radiation I weighed 131 lbs and I weighed in at 177 lbs. I'm average height - 5' 11" and did not get any shorter That means percentage wise I lost one quarter of my body weight, yet my mask fit as snugly on the 40th radiation as it did on the first. Out of all the concerns my medical team raised over my weight loss - my mask not fitting tight enough never came up. I drank water constantly and never got dehyrdated but I did do like your husband only in reverse. In the last couple weeks I resorted to wearing a vest with fishing weights in the pocket and my heaviest Telson Danner SWAT boots, along with a blackberry and a biker wallet with massive chain and keys just to keep it near 140 so they wouldn't panic. I don't see many TV informercials about "fat faces" or new machines to "lose inches in those face cheeks". Most fat in on the waist, thighs, abdomen, buttocks, etc and would not affect a face mask. That said, maybe his RO needs some more practice on making masks if that is a constant issue with her patients. I would suggest getting a valid starting weight "do over" or else continue to wear the boots, etc.

good point Patty but they bolt you down so you can't move. The mask is almost suffocatingly tight anyway if made properly. But if this is something to worry about, somebody on this board will chime in. Again, sounds like a manufacturer's defect to me.

I used Aquaphor and Biafine for the burn and Zofran for nausea. By the end, I had a pretty bad burn, but the Aquaphor seemed to do a good job keeping it from hurting.

I tended to use the Biafine during the day and the(greasy)Aquaphor at night. The CCC gave me the biafine.

True Charm - after every treatment I had the imprint of the mesh on my face for quite awhile. I agree with you. They called me back to remake my first one because they did not have my head positioned just right. This last one was actually tighter than the first two, but all of the equipment was different also.

Patty

Geri,

I was given Aloxi and Emend during my weekly treatment on Tuesday, took the Emend for two days immediately post treatment, as prescribed, and then I'd go back in on Fridays for another dose of Aloxi and 1.5 liters of fluid. This seemed to work very well for me and with my PEG tube, I fundamentally lost no weight during treatment and had no trouble with dehydration or nausea. (Afterwards, as I was transitioning off the PEG I did lose weight, though.)

As far as my skin, for whatever reason, I didn't experience bad burns which, being fair-skinned, I had expected. I used an aloe-based moisturizer from the Body Shop and had a couple of smallish blisters that developed about 10 days post-treatment.

Not sure if this helps or not.

- Margaret

Cheryl,
I would like to add another comment about RT and the recovery time. Another poster here stated that "the worst if it is over in 7 weeks". That's not quite accurate. About 7 weeks is when you will finally start to see some improvement in your condition. Stated another way, at the end of 7 weeks you will start measuring your forward progress in three week increments for several months post Tx. The post Tx effects of the RT alone gone on for about 3 weeks. The general rule has always been that it takes one month of recovery for each week of radiation. I was in great health going into treatment and tried my best to defy the rule - not. Once again, this is not to discourage you and all of us respond differently to treatment but I am a firm believer in planning for the worst case scenario. It was a good 2 years until I was about 95% of where I was pre Tx. After 2 years, some collateral damage stared to appear in my fibrotic neck muscles, as a result of the radiation. I have muscle spasms fairly frequently as a result and others here have reported the same effects. My side effecrs have been relatively tame.

Wow Gary. One Month for each week of treatment! That helps me feel better about where I am right now - still very red, dry, flaky, itchy BUT not bleeding from the neck any more. I had not heard this info before thanks

Patty

Gary my 7 weeks begins the 4th week of Tx and ends the 3rd week post Tx and I think that is the worst period for the majority of us that got radiation. Sure there are some that get worse earlier and some that stay worse longer but there are also the ones that are hardly affected by this Tx. I always qualify my statements that all of us can be affected differently but I believe that for the most of us that 7 week period is the worst and I just want people to understand that in the grand scheme of things the worst WILL ONLY last about 7 weeks. Weird way of trying to comfort or give hope to someone but it's the best I can come with this barbaric Tx.

It seem the the month for each week is a good benchmark for getting back to normal (or a new normal), but somewhat like David said, for me the worst was the last week of so of Tx and the month after(totally drained).

I also had a lot of difficulty for several months post Tx with eating and weight(after the PEG was removed) because of poor taste and little or no appitite.

Recovery varies for everyone. Your treatments and procedures were much more serious and invasive as I only had Chemo, RAD and selective neck dissection. My worst time was the week after my last Chemo and Rad. I had surgery about 30 days after treatments were complete. Back to maybe 85% 30 days after surgery but was playing golf, working..... Good news is I started to put weight on pretty soon, the bad news is that is was from my sweet tooth coming back before anything else. Before SCC I was not much of a sweets person, I now know it is easy to put on weight when you eat a lot of cake/ice cream, etc. It just takes time.

On average and everything being equal it takes an extra 500 calories each day for 7 days to equal 1 extra pound and vise verse.