Hi Everyone,
My darling husband recently diagnosed (5 weeks ago) with BOT (T2 tumor) and also in left lymph nodes stage 4A. Biopsy revealed HPV positive. PET CT Scan showed cancer has not spread to rest of body. Have great ENT Doc at Hopkins who did Biopsy, Peg and Port for chemo after we made decision not to go the surgery first route. He is doing 1 chemo (cysplatin) per week (started last Friday, March 22) and started radiation this Monday, 25th. Radiation daily, 180 rad once per day, 6 X week, for 7 weeks. 42 treatments. That sounds like an awful lot + chemo once a week. Is that normal? We don't want him to be "over radiated." And dreading that he most likely will have swallowing problems.
We are both being very positive and upbeat, although very scared. He is going to work for as long as he can. I so need a good cry but can't afford to break down until it's all over and he's cancer free. Have done quite a bit of research which is how I found this site. It can be so confusing with all the info out there and I tend to "over Google" which is disastrous!
I thank you in advance for any help, support you may give me/us.

Hi Pamela! Welcome to OCF! You have found the very best place to get correct medical info about oral cancer. Do yourself a favor and cut back on the googling, it can bring up alot of bad info. At OCF, we are patients and caregivers who have been there and understand exactly what its like. We will also give you moral support to help on those bad days when you need to vent. Some caregivers have said they will cry while taking a shower, maybe that would work for you. As a caregiver its a rough job! I cant imagine watching someone you love with all your heart going thru so much all while keeping a smile on your face and being their advocate. Dont forget to take some time just for you from time to time, even once a week take 2 hours for yourself. You too need a bit of pampering from time to time. Round up friends and relatives, anyone who offered their assistance and take a break once in a while.

Several very important things to make sure to do thru out your husbands treatments. Eating and drinking are the key to getting thru this easier. Every single day make sure he takes in a minimum of 2500 calories and 48 oz of water. Push for even more on a chemo day and the day after to flush those chemicals out of his body. I cant stress the 2500/48 enough! It can be the difference between doing ok or being hospitalized for malnutrition and dehydration. Its really that important, skimping even one day can cause serious issues. Take small sips of water even if it hurts to swallow. He MUST do this daily, several times per day to keep those swallowing muscles active.

There are all kinds of other very important things to do while going thru treatments. There are exercises to do to stretch his mouth open. Rinsing with salt/baking soda/water combo several times per day. Using flouride trays daily for his teeth. Using thick cream on his skin where it turns red. ETC..... Too many small things which will come up as you go along.

Best wishes with everything!

Glad you found us, sorry your here. I too, am a BOT'er HPV+16. The good news this is treatable and curable. It's a long road so slow down, take it easy, stay off doctor Google, and ask questions here. You and your husband will get through this.

Hi Pamela - Sooo glad you found this great place to be for the latest and most accurate information, plus the support from knowledgeable people who have been where you are, and can really help ease your mind. Such great advice you have gotten above. I can remember what a bunch of nerves and worry I was when my son first got his diagnosis. I sat at my laptop wanting to google "Sqamous Cell Cancer" and it took me three days before I could even make my fingers do it. I was so afraid of what I would find. It is scary so don't google. Coming here often - even several times a day is what helped me and my son get through his treatment and he is doing just great now, six years later! I use to cry in the car on the way home from seeing my son but crying in the shower is a lot safer and can be very cleansing and relaxing in more ways than one! Let us know how you both are doing.

Welcome Pamela. The radiation treatments sounds like "accelerated fractionization" treatment, and is used for better tumor control, in a shortened time period of 6 weeks rather than the Standard fractionization of 2Gy per day, 5x a week for 7 weeks with total dosage at 70Gy. As such, you will have be getting more radiation of about 75Gy. This has acceptable toxicities with better tumor contol, being the tumor cells not have a chance to repopulate, but may have more skin and mucosal problems than usual with this.

The hospital should have a nutrionist speak with you regarding adequate nutrition, and hydration, especially protein for healing. The radiation Oncologist will advise what creams to apply to the neck, mine recommended Aquaphor, pain meds, and mouth rinses, basically salted warm water with baking soda, and some, Magic Mouthwash, and others. Oral care is imperative before, during, and after

Good luck with everything.

Pamela, sorry you have to come on the roller-coaster ride but a warm welcome nevertheless. Your husband's diagnosis is very similar to my husband's. his Tx was 35 sessions of radiation over seven weeks and three bags of Cisplatin. He only managed two sessions of chemo as he developed deep vein thrombosis after the second session. For the skin, we were advised to used unscented Lubriderm which John put on post treatment from Day 1 ( don't use any immediately before going into treatment as it will intensify the burns). We used flat club soda for rinsing, again from Day 1. I don't know if it was because we did all these things from before the problems started, john never really had problems with mouth sores. He did get some radiation burns and we did the saline soaks diligently, four times a day. The fatigue was overwhelming.
Caregiving can be tiring, so make sure you grab as much rest as you can. It is okay to access counseling support t the hospital if you feel the need. Don't be afraid to ask doctors and nurses questionsif you are unsure about anything. It will help you and your husband through this stressful time.
Hang in there and come on the forum to vent, ask questions or update. You have a circle of friends here who nderstand fully what you are going through.

Hi Pamela. Welcome but sorry you have to be here. Your husband's diagnosis sounds almost exactly like my husbands'. John had weekly Cisplatin (7 weeks) and daily radiation - 5 days a week for 7 weeks. If your husband has ANY ringing in his ears let your doctors know immediately. My husband has permanent hearing loss from the Cisplatin. You can see from my signature that this cancer can be beat!

I tried the best I could to stay positive and upbeat around my husband but would have a good cry driving to and from work. It helps to "let it go". I also kept a journal which was really helpful for my mental well-being. There is so much going on before, during and after treatments that it is nice to have it documented. When people on this site look for timelines and have questions I still use it as a reference.

Remember to take care of you!

Hi sorry you're a member of our club but it is a good club for information. With regards to the cisplatin weekly, some hospitals do it that way as opposed to the 3 big bag method. So basically it's less cisplatin but more frequently - ultimately it ends up being the same amount and more tolerable. I had the three big bags... ;o) well two of them as we ran out of time for the third and I'm told that happens a lot. The radiation seems like more than what is normally prescribed, but I am sure they have good reason for doing it that way. The average is 33-38 usually 35. I had 33 but only because I had had surgery so rads and chemo was meant to be a safety harness. ;o)
There are a lot of side effects of radiation. Look them up so you are educated and have a good idea of what to expect so you can prepare in advance. And make it clear to your hubby, it's hard, and painful, but in order to get through it he MUST take in enough nutrition, and fluids, even if it's liquid nutrition, and if they give him a PEG, he should continue to swallow frequently.

;o) hugs, and try not to worry - it is treatable, and curable and generally HPV has a good outcome as the cancer responds well to rads and chemo.

take care.

Thanks so much, Everyone for your kind words of encouragement. I will take your advice and not Google and get my info from this site. After all, you all know what you're talking about. My husband spoke to the Chemo Dr and he thinks he is getting too much radiation, so we are thinking he will do the 6 X per wk rad for 6 wks (35 treatments) and skip the last week. We have appt. with the surgeon April 30 to see how the treatment is working and that the tumors have shrunk, hopefully destroyed by then as it will be his 6th week of treatment.
Thanks again and I will check this site daily.
Isn't it wonderful when something bad happens that it brings out the best in people and there is such an outpouring of love?

Pamela, take a look at the blinking envelope next to the "My Stuff" tab. Click on the envelope, I sent you a message with help on the forum and for making a signature.

Most patients get 30 - 35 rad treatments, very few get over 35 but Ive seen it done. Its really a case by case basis. There are so many factors contributing into the treatment plan that was proposed to you and your husband. It depends on exactly where the tumor is, how large and if it has spread to name a few of the variables. Im sure the patients overall health play a part in the mix too.

Hopefully your husband is being treated at a major cancer center where they are very familiar with oral cancer patients. At the countrys top cancer centers they use team based approach where the whole team will consult on individual cases before a treatment plan is put in place. If he is not at a cancer center, please consider going to one at least for a second opinion. It really does make a difference.

Stick with us and we will help you both get thru this.

Pamela
I just got releases from the recovery room from surgery but I had to post with all due respect to your chemo doc, he qis not qualified to evaluate your husband' s radiation tx plan. In fact, he is biased as everyone knows that for base of tongue cancer, it is the radiation which cures you. Chemo plays an important but secondary role. I am surprised he can eve get malpractice insurance with advice like that. Trust York radiologist. Trust me you will never forgive yourself if your husband has his cancer return because usband wiof not getting enough radiation ask yor radiologist the total number of grays or
GY. In the tx. It should be 72 to 77.
Trust me
Charm

Hi Pamela,
I agree with Charm. If you read my signature you will see that Kevin had 60tx over the 6 week time frame. We went 2x a day. Let your husband's RO make those decisions. You want to hit this hard the first time around, so maybe, you can avoid a round 2. Sounds like you were on the right track. Hopefully they will let you stay there.
Keep in touch,
Kathy

Pamela

My diagnosis is similar to your husbands. tumor in tonsil 4cm
left lymphnode 2. I have completed 13 of 35 RT and I have second of 3 chemo cisplatin on 4/3. (every 3 weeks) Diagnosis is similar but treatment not so much.
The advice you received in an eatlier post is very good.
Hope all goes well. Just have to get through it.

Thank you all for your comments, particularly CHARM just out of recovery. We are just wondering why my husband's RO wants to give him 42 treatments and not the standard 33-38? RO said that this is accelerated treatment and actually wanted to treat my husband twice a day with 240 rads per day. Of course we want the cancer completely gone but this more aggressive method causes more swallowing problems and makes the side effects worse. I have heard from others who have been treated by this doc that he does tend to "over radiate" and he's the only community RO we have here. So that's why we are scared. When we mentioned it to him he just shrugged and told us he knows best (very arrogant). My husband is getting check up with the Hopkins surgeon during his 6th week of therapy so we will hopefully see how things have progressed then. We SHOULD have got a second opinion from another RO out of our area. It's enough to deal with the cancer but to have to deal with doctor's egos is too much. Sorry to vent. Hope husband's RO isn't a member of this site he'll probably fry us both!!! LOL. At least I laughed.

Pamela

When I posted, I had not slept in over 46 hours and was still groggy from the surgery and had just gotten another morphine shot, so please excuse all the typos.
First of all, ask hot shot rad doc to use Grays, Only old fashioned out of date people use Rads, So it is possible that this doctor does over radiate if he is using a 1975 standard from last century Here is a quick primer
[quote]The adoption of the gray by the 15th CGPM in 1975 as the unit of measure of the absorption of ionising radiation, specific energy absorption in 1975 was the culmination of over half a century of work, both in the understanding of the nature of ionising radiation and in the refinement of measuring techniques.The gray supersedes the rad , an older unit of radiation dose. In some documents the rad is still used; the gray is 100 times larger. To convert rads to grays, multiply by 0.01. To convert grays to rads, multiply by 100.[/quote]
At the very least, take him down a peg by asking why he using an outdated vocabulary which is usually a sign of not being on top of new developments and displays an dangerous unwillingness to learn new things.
Again, if he pushing more than 77 Grays total, your chemo doctor might be quite right.
Charm

Thank you. I would so enjoy taking him down a peg or two! When we see him again next Tuesday I will certainly ask that question. Yeah. Thanks again!
I do hope you are feeling better now.
This site is terrific. I'm learning so much and find it a great comfort.
Pamela

Thanks Christine, I've made my signature. And thanks for your comments. I'm so thankful to have this site.
Pamela