Hello all. My husband was recently diagnosed with Squamous Cell, base of tongue primary and affecting right neck lymph node (they didn't share the stage with us and he didn't think to ask). They claim no surgery is needed, he will go through 35 radiation treatments and a few Cisplatin treatments. I have several questions, as our advice from the doctors was simply "Just do what we tell you to do from this point on." This doesn't set well with me, as we would rather be informed as to what is going on. My first question to you all is, they ASSUME it is HPV related, but no definite, therefore they say it is highly treatable. Is there a test they can do to be certain it is HPV related without surgery? Also, he's concerned about hearing loss as he is already a little deaf from an eardrum rebuild they did when he was a kid so he chose to get smaller doses of the Cisplatin over time instead of 3 large doses. There were no other suggestions for medications/chemo. This is all happening really fast and they're just taking the bull by the horns without telling us if he has a choice and what they may be. He's a musician, so I'm assuming the radiation will take quite a toll on his singing voice/ability to sing. It would be a shame if the cisplatin caused other things that would compromise his quality of life. Thank you for any help you can offer.

Jeanne

Hi Jeanne
Sorry to hear about the cancer diagnosis and the upcoming treatments and learning about all this.
I am fairly a newbie too, and I have HPV related SCC cancer. For the doctors to know it's SCC, there must have been a biopsy. I have a copy of mine, it goes into much detail about the markers of the cancer.
So I suggest you get a copy of that biopsy. Also, I learned this a little late, get a copy of all reports, and the CDs/slides of any tests. You may have other doctors that want that. I hope you have a copier at home. Make several copies of each, and burn copies of the CDs. Also, start a journal with dates, times, locations, doctors, notes on anything related. It all runs together and you will forget.
See if the biopsy has a HPV with P16 protein. They are usually optimistic when they see that, but whatever the biopsy shows, that is just so important to every decision you guys make going forward.
Best wishes, and let me know if you have any questions about what I wrote. I am a newbie, and just learning from members here with years of treatments and information sharing. You arrived at a great site.
Regards,
Mike

Hi Jeanne,

Welcome to the forum, though i’m sorry that you need to join our group of friends. If it is base of tongue, the most common treatments are radiation and chemo. It is just too difficult to reach the oropharynx in surgery — one RO commented that the doctors would have to cut out the tongue and break the jaw to reach the cancer. Whether the cance is HPV positive or not won’t change the treatment plan. My husband’s voice wasn’t afffected by his treatments though he did suffer slight hearing loss.

Mike has given you excellent advice with regards to record keeping. I assume ChristineB will be by soon to give you some info about hydration and nutrition so I won’t talk about that now. You and your husband may like to consider eating all his favorite foods now before the treatment begins. What with swallowing difficulties and taste changes, it may be a while before he can enjoy good food. Hang in there, you can do it.

Thank you both Mike and Gloria. I'm 42 years old and he is 61. Cancer is nothing that either one of us had planned on (who does?) but especially now. The financial aspect is going to drain us. Although we do have health insurance, it doesn't cover everything as you know and he will be out of work soon and I will be as well to drive him to his appointments and to care for him (radiation is an hour one way). They did a biopsy, drew out necrotic fluid and the cytology report came back as "suspicion of Squamous Cell." We didn't get any copies of anything as of yet, but I'm glad you mentioned it because I will be sure to. The radiation doc said the suspicion was high enough that they are treating it as such. After the biopsy, she said she believed it to be HPV related and that's what they're hoping for. I will be sure to see if the report shows HPV with P16 protein. Gloria, I'm glad to hear that your husband's voice wasn't affected. They are treating both lymph nodes, the one that they biopsied aggressively, and the other side not so aggressively. They seem to be positive about treating this, but his quality of life after is what we're both concerned about. Also, where I will be caring for him, I'm concerned that I will mess something up. I have a medical background, but have never cared for anyone with cancer before. It's overwhelming. All we can do is take it one day at a time and trust the doctors (which I have an extremely hard time with) and their decision making. Thank you again for your response. :-)

Welcome to OCF, Jeanne! Im very sorry you have need our group to help you and your husband with his oral cancer (OC). You have come to the right place to get info and support. Being a caregiver is a tough job! Make sure you set aside some time out of every week or day if possible just for you. I know its not easy having everything on your shoulders plus taking care of someone you love who is sick all while keeping a smile on your face and talking positively. Thats more than most people could do. Even if you go out to lunch with some friends, go to a movie or out for a drive it will make help clear your head and make you feel a little better.

The smaller weekly doses of chemo was a very good decision! Pay very close attention to any change in hearing your husband may complain about, even a slight buzzing needs to be reported to his medical team. There are other chemos that can be given but from what the research all has pointed to being the best is cisplatin.

One thing you both can work on is to focus on what is within your control. If you've read any of my posts, you will notice Im a big believer in a patients intake every single day hitting the minimum numbers of 2500 calories and 48-64 oz of water. It really is that important!!! If you can encourage your husband to take more in that will only help make all of this easier on him. When battling cancer, the patients body is burning up calories at an increased rate trying to fight the cancer and rebuild the body. I have nagged hundreds, maybe thousands of patients to pay close attention to their intake over the years since Ive recovered from my 3 rounds of OC. With your husband starting treatments very soon he needs to eat all his favorites and desserts too. If he is on the slim side putting on a few pounds would be a good idea. Its surprising when some patients need well over 5,000 calories a day to gain a couple pounds. When I was recovering from rads and chemo, I would frequently take in around 7,000 calories and didnt gain an ounce. I used to love having my gigantic chocolate peanut butter milkshakes. Eating all your husbands favorites now is a good idea as during rads, his sense of taste and ability to swallow will be compromised. Its only temporary but when going thru it, getting everything to go back to normal seems to take forever! The last thing your husband wants to do is to begin rads having cravings as its likely going to be a few months before he can manage whatever he was craving.

You mentioned your finances will be a challenge when your husband is being treated. This happens to many cancer patients, myself included. Ive added a link to the bottom of this post. Its to our main OCF site where you can find some organizations that offer financial assistance or certain services for cancer patients. It could take a while to apply or to meet a particular groups guidelines so you may want to begin looking into these things right away. I know the American Cancer Society has a volunteer drivers program that can help you by driving your husband to his treatments or doctor appointments. They also give either a $300 voucher at your local pharmacy to cover prescription co-pays or items from that store or reimburse you for costs associated with going back and forth to treatments. Theres paperwork for all their programs and it can take a little while so if you are interested, call right away. They're available 24/7. Most hospitals have programs you must ask about in order to get help to pick up co-pays, eliminate some bills, or give a discount off some of the bills. Some places even give charity care and will wipe out the entire bill for some situations. I always say... you gotta ask to get. You have nothing to lose by asking what programs are available at your husbands treatment center. I hope some of these places will help you and can take some of the financial burden off your shoulders.

One other thing you mentioned, your husbands voice. Many OC patients going thru rads will temporarily lose their voice near the end of their treatments. I lost mine for about 2 weeks. Its only a temporary issue so dont worry if this happens. Almost all will regain their voice in a few days or weeks.

Prior to starting any treatments, your husband should have a thorough dental check up, fluoride trays made, a complete blood test including thyroid and testosterone levels. It will seem like there are so many appointments. Once treatments begin it will settle into a routine.

Best wishes with everything!

Thank you so much for the info Christine. He had a dental checkup the other day and this afternoon, he goes back probably for the fluoride. We got the news yesterday that he will be having his port and PEG tube placed Monday, Tuesday is the "dry run" and Wednesday it all begins. I'm taking him out tomorrow night to a concert and dinner to try to fatten him up a little. You had mentioned a link, but I didn't see it in your post. Did I miss it? Probably.

Thank you again for the information. :-)

I like the idea of dinner and a concert. Good for you guys.

Hi All,

I asked my husband yesterday to get the list of labs that they ordered when he went to get his blood drawn and the only thing they're testing is PTT, INR, and Platelets. Can you tell me what the importance is of having his testosterone checked prior to radiation and also the TSH? I can make sense of the TSH since the radiation will be in his neck, but I can't make sense of the testosterone test unless the treatment was near his kidneys or testicles. If you wouldn't mind shedding some light on the subject, I'd be interested in learning. Should they have ordered these tests?

Thank you,


Jeanne

Hi Jeanne

My husband was diagnosed with HPV-16 Squamous Cell Carcinoma in January and began treatment at the end of February. He had two infusions of Cisplatin and started noticing a background noise in his ears. His Oncologist suggested we move his treatment to Erbitux, which is immune therapy and much easier on the body. We did that and are glad we made that choice. The radiation is hard enough, but coupled with the Cisplatin, I think even tougher. You might want to ask about Erbitux.
Cindy

Im very sorry I forgot to add the link to our Financial Assistance section thats in the Resources section of the main OCF site. Ive added it to the bottom of this page.


All chemos will have side effects. Carboplatin is usually the next chemo given if cisplatin produces serious side effects with ear problems. They are both platinum based chemos. Erbitux (cetuximab) is another type of chemo. It does have side effects, most patients get rashes with erbitux some will have more serious infusion reactions. Make sure you always report any issues, no matter how insignificant they may seem to your doctor. Ive added a link at the bottom of this post to our main OCF site, theres much more in depth info about chemo.

Main OCF site, Resources, Financial Assistance

Main OCF site, Understanding, Treatments, Chemo

JLohr,

Sorry to hear about the Diagnosis. Dang HPV got me too. The good news is that was 6.5 years ago. The HPV status is something they defiantly can determine. While I was doing my research, I found somewhere, that 80% of BOT cancers were HPV. I believe it is much higher than that. If it is, this is highly treatable with good success rates. The down side is this treatment can be brutal. At least for me it was.

I had cisplatin. I was scheduled for 3 big bags. However I was so sick they cancelled the third dosage. This happens a lot. Weekly seems to be much more manageable. However I believe, (I admit, I could be wrong) that the three big bag method is still the "standard Treatment". To me that means, nothing has replaced this as the "best method". I mean that in the terms of kicking cancers ass. However, they are plenty of studies that say, weekly cisplatin or carboplatin are also good methods with much less side effects.

I had no issues with hearing loss but this a definite concern with cisplatin. I really bothers me that there is not a test to determine whether cisplatin will can hearing issues. To me, this seems odd because cisplatin has been around forever and therefore plenty of data is available to draw correlations or causation. It is like no one "want to know" or there is just "no money" to find out.

My advice, seek the best cancer center available. Find doctors you trust. Think long term but act short term. Try not to panic, follow all instructions. Get as much done now and clear your schedules, prepare for a rough 2-6 months. This is very treatable but the treatment is harsh.

As far as I remember, the advice to get the baseline figures for thyroid and testosterone came from a discussion in which a member mentioned his discussion with his doctors post-treatment if his thyroid levels wrere “normal.” His doctors were of the view that the blood tests showed numbers that were in the normal range, but the member felt that it might not have been his normal pre-treatment. But at that point it was impossible to determine what his personal normal was as it was post radiation and if there was impact on his thyroid, it had already happened, hence the advice to get the baseline figures before treatment starts. I believe the same is possibly true with regard to the testosterone level. Unfortunately, this member (Charm) has since passed away. You might want to search the posts under his name or thyroid levels if you want to learn more.

My husband’s treatment did affect his thyroid level and he suffered from erectile dysfunction as well. He was put on a thyroid supplement post treatment and was given a prescription for Viagra.

Gloria is spot on with her info. Prior to beginning treatments its important for every patient to have a full blood test including thyroid and testosterone levels (only men need). This has been discussed many times here. I do remember Charm posting about it several years ago. Charm was a dear friend who was one of the kindest and most knowledgeable people Ive ever met. Rads (with or without chemo) does a number on most OC patients with having a direct impact on both thyroid and testosterone in men. My thyroid took the hit and started getting messed up a couple years after finishing rads. Its a tiny little pill that I put thru my tube every morning so its not a big deal. My ENT orders blood work every 6 months to keep an eye on my thyroid levels and adjusts meds accordingly. Im at 75mcgs of levothyroxine, just changed from 88 in Feb. From the talks Ive had with my very experienced ENT, seems like almost every patient who has rads ends up on thyroid meds eventually.

Definitely get a thyroid baseline. One of my doctors tried to say that my thyroid failure post-radiation wouldn't have happened 'if it wasn't about to happen anyway' as if I was trying to blame him or something. I was just trying to get to the root of the problem, which was fatigue caused by thyroid failure! And I needed the numbers to prove what was going on, which fortunately I had. It doesn't happen to everyone ... mine probably did have issues beforehand ... but it's better to know all your numbers!

If treatment hasn’t started yet, as recommended, have thyroid baseline, in addition too, kidneys, which is pretty standard with blood tests showing the GFR, but testosterone levels, hearing, and vision too, which all were altered from my treatments. I’m on daily 150mcg levothrixine. A recent hearing test showed I lost 50% of my hearing in my left ear, most radiated side, which I sort of knew, but not the percentage, and it was recommeded I get a hearing side.

Some things may be measured during treatment, but definitely all after treatment has ended as these can be affected.

Good luck

Thank you Christine. I haven't checked in because as you know, it's been busy. Treatment is an hour away. My husband started experiencing ringing in his ears and sores in his mouth, so they stopped the Cisplatin. We have an appointment tomorrow to discuss changing drugs. The nurse did mention Carboplatin. Do you know if this is a lot different than Cisplatin? His nausea wasn't bad at all and besides the ringing in his ears and sores in his mouth, he hasn't had any major side effects from the Cisplatin. We're both concerned that by changing the drug, he's going to experience something worse. Any input would be much appreciated. He's now into week 3 of treatment and the thick secretions are keeping him up at night. We have magic mouthwash and they mentioned a gel of sorts that wasn't in his prescribed meds when we picked them up, so I'm assuming we have to ask the pharmacist for it. His tongue is SO sore and his throat is starting to get sore. He's also developed an extremely painful muscle spasm/pain on the base of his neck in the back. We've tried everything from Flexeril to massage to Reiki to Chiropractic and nothing is relieving the pain. I'm assuming this is from the radiation? Sigh. My heart goes out to all of you who have gone through it. It's horrible for you to go through, and painful for your loved ones to witness. :-(

The hearing loss can happen without significant signs. My husband lost enough of his hearing to be advised that he should get a hearing aid and he had no symptoms of possible hearing loss all through his treatments. Carboplatin is another chemo drug that seems to be quite frequently used. My husband had both Cisplatin and Carboplatin (later in another round to deal with his metastasis). As far as I can remember, there was no significant difference in John’s reactions to the two meds.

A Waterpik used with warm water, a bit of the mouthwash, on the lowest setting with the tongue scraper attachment cleans out the mouth and gets rid of the gunk really well. John used to say it was the best purchase we had made. I learned about it from this forum. I bought one at a reasonable price at Costco.

Starting from about Week 3, the patient will be find treatment increasingly difficult. Hang in there, I am thinking of you.

Thank you kindly Gloria. I will be certain to find a waterpik and tongue scraper. :-)

The tongue scraper attachment is part of the Waterpik attachment set. You don’t have to buy one.