My 58 year old husband was diagnosed with stage 4 tonsil cancer June 8, after experiencing a swollen growth in his neck. PET showed cancer in one lymph node as well as the tonsil. Surgery removed tonsil and 10 lymph nodes.....initial surgical pathology looked great, but further path showed a bundling to a few lymph nodes...everything on right side. Now recommending chemo as well as the planned radiation. Two medical centers interviewed....one recommending weeking cisplatin, the other three treatments. Equal total quantity. Any thoughts and experiences to share? Thanks...need some advice! Any survivors...would love to hear your success!

My husband had stage 4 BOT cancer with several lymph nodes involved. He had the Cistplatin, Taxotere and 5fu. The he had 60IMRT with Erbitux. Finished in October and went back to work in Alaska on the Artic Slope on January 5th. Has been going strong since. Your husband WILL lose weight so it's important to bulk up while he can eat. Once tx starts nutrition and water are a must. Is he getting a PEG tube and a port?
None of it is easy, but in a blink of an eye you'll be looking behind you. Take it one day at a time and be sure to stay on here for support for both of you, but mainly for YOU. Caregiver is a very difficult role and you will be completely overwhelmed by the feelings of helplessness sometimes, but, a good cry and you get back to it!!
Keep in touch and feel free to personal message any of us.
Blessings,
Kathy

Cisplatin & radiation is a common "One, two punch!" Kept me from another surgery and literally saved my life! Lost a lot of hearing (Especially high pitches) from cispatin so ask questions about that but the trade off is worth it (I'm still breathing). They will tell you that once you have the symptoms they describe the damage is done and hearing will be affected. Kathy is correct, eat like a beast now! I had a port and a PEG prior to starting treatment. That feeding tube became my best friend for a while so don't let his ego prevent getting it. Port makes hydration easier with cisplatin treatments so I'm sure it will be recommended. A few years from now it'll be a memory in the rear view mirror. Hang in there & Best Wishes!
Steve

Thanks for your prompt replies. I am obviously new to all of this. Trying to evaluate the benefit to weekly cisplatin or just three doses. Any thoughts?

I had cisplatin spread over 6 weekly visits combined with daily radiotherapy treatments. When planning my treatment I recall they talked about 3 x cisplatin, but decided it would be better to spread it out for me. The impact and side effects of 3 higher doses might be much greater than 6 smaller doses on some patients.

Karen

The doctors will be considering both the efficacy of the two protocols in generaly, and how your husband in particular will do with the different protocols. One of the issues with the three doses is whether or not the patient gets all three doses due to toxicity. You might ask about that.

I can't find any direct studies comparing the three vs. seven dose results, but maybe I'm just having a bad search day. Ask the doctors about this - they may have this information. It looks like some institutions prefer one or the other protocol.

My very best wishes to both of you - this is a hard journey but the I hope that the resources and support of this site will help you as it did me.
Maria

Oncologist shared (small) study showing lesser side effects and same result with weekly cisplatin.....stating three large doses are given to patients who have not had surgery to remove tumors. Our thought is...why not be aggressive and have the same treatment given to someone who still has cancerous tumors? Any thoughts out there? Also, he had surgery, which provided the pathology showing multiple lymph nodes. They told us that information would not have been available without removing the nodes in surgery. How then, do patients choosing just chemo/rad know if the cancer has bundled to more nodes...thus making it a more serious prognosis? Thanks for your time.....really need some help....

If the patient can't tolerate the more aggressive treatment they may miss one or more of the chemos - bloodwork will determine if the chemo can be administered. Worse yet, it may interfer with the radiotherapy schedule: you really want to keep as close to that schedule as possible.

RE: bundled nodes - I've seen CT's showing bundled vs regular nodes somewhere online - not that I can tell the difference. It may be that the extent of the problem is only available with a neck dissection. I think you should ask again exactly what they meant about not knowing without the neck dissection.

Hi good.

I was base of tongue SCC HPV16+ with one lymph node stage III and I only had radiation and Erbitux. My tx started November 20th 2012 and ended January 20 2012 (radiation burns to neck caused some stops and starts). I did not have surgery or platinum chemo (cisplatin)

My first post tx PET / CT May 7th came back very good. That same day I had a scope and finger exam and all looked good as well.

June 6th 2012 my ENT and my Oncologist both performed a scope / finger exam (separate appts) and both looked good.

Bottom line is I have been back to work full time now for 2 months and I feel very good. No long term side affects such as hearing or numbness or anything else. Full taste buds back, can eat "most" foods (smaller bites, have to chew well and no spicy foods "yet")

I did have a feeding tube placed in me BEFORE tx began...still lost 70lbs during tx (now up to a loss of 85lbs)but I was a big guy to begin with.

I now have some really nice baby skin on my neck (wife is jealous) and I actually look younger (no kidding) AND have lost all that weight. When old friends see me they say "you look great, how did you do it"? I tell them it was a $250,000 dollar diet / face peel treatment.

I am a 6 month survivor and I plan on living to 100!! I think you are off to a good start, but I am no doctor.

Best,

Tim

Thank you for your encouragement..we are struggling in do many ways,... The thought of losing our beautiful life, just as we both retired,,,,with so much
ahead of us. He will get a PEG,,,,,,he barely weighs 175 on a good day and is down weight from the tonsillectomy 2 wks ago. We are struggling as we talk to 2 very fine medical centers.....one university (telling us 3 cisplatin over the course), the other a private hospital stating weekly. Neither wants to use Erbertx. They feel it is still unproven. Telling us radiation will be only 6 wks due to surgery, any thoughts?

Welcome to OCF! The 3 large doses of cisplatin seem to cause more nausea while the smaller weekly doses are easier to tolerate. I do not know of any research proving the better effectiveness of either method. Chemo is used to help boost the radiation, alone it will not cure the cancer. If I was offered a choice and know now what i didnt then, I would have chosen the smaller weekly doses.

If he will be getting cisplatin, make sure to have a baseline hearing test done as well as a full blood count including thyroid. You may need these results later to use as a reference of where his numbers should be. Many who have had cisplatin report high frequency hearing loss which is permanent (not me).

I was not aware of that "small study" comparing the weekly to the Three Big Bag method of administering Cis but our experience on this site indicates that members experienced less side effects with the weekly than the standard 3 bag method. Many who sign up for the 3 bag method never get the 3rd bag because of the severe side effects from the first 2 so consider that as well. The goal of this Tx is to kill the cancer without killing the patient and believe me this Tx takes it to the wire.

Welcome to the best OC site in the world. We will be with you 2 as long as you want.

I had the 3 weekly despite being told it was likely I was cured - this is the protocol for my hospital - I had minor nausea that it -,I did miss the last dose as my WBC count was low and verything was off a week. But I did fine on it - some have a bad time - depends on the person. Is you husband normally sensitive to meds? have health problems? This would b a factor too. One thing I did note you said niversity medical vs private hospital. Your husband should be treated at a comprehensive cancer center. Good luck...

Ok, here's another question to ask:
"How many patients do you treat with head and neck cancer every year"

Statistically, results are better at institutions that see greater numbers of patients. Thats not the route we took because of the quality of our young ENT, so the doctors themselves are also a factor. This is why so many are advising a CCC facility. Nothing says you can't get a third opinion.

One other thing to remember in the decision making process - if you are anxious and distressed, you can't do math in your head, and everything is going to look more dire than it may actually be. If you start feeling panicked, so SOMETHING ELSE for a while. I'm going to send you a PM - check My Stuff when the little email flashes.

I had the three doses as well, and it was pretty rough, but I made it through. I stilll think that the long-term side effects from radiation were the worse. I guess I didn't realize how rough the 3 doses were until I saw a new MO. When he was looking over my records he commented that he was surprised that I made it through the 3 doses as well as I had. He also told me that many folks don't make it to the third dose. I guess I'm just a tough old broad!

Kevin only had 2 tx of the Cistplatin, Taxotere and 5fu. They wanted to do Carboplatin (sp) with the erbitux and IMRT, but he declined. It was his decision and I let him make it. Now, of course he is doubting that decision.
As everyone has said, the smaller doses are going to be easier to handle. If he loses some hearing, that's what they make hearing aides for. Kevin is now in the process of testing at his work in Alaska because of the hearing loss. They have to prove it is from the Cistplatin and not an OSHA recordable incident. Kind of a hassle but you gotta jump through the hoops.
Hope that you can find some peace and make a decision soon. Oh, we also did NOT have surgery and had multiple nodes involved. However only one of the nodes was tested. Our MO did not think surgery was necessary if we hit it with the big chemos. He said he wanted him to keep the nodes for his immune system later. I know most everyone has had surgery, but we did not.
Kathy

How horrible will the effects of three cisplatin treatments be?

Nausea was my worse side effect. The 1st was OK but the 2nd was really bad and the third was worse. Combination of more rads, weight loss and chemical imbalances I guess. I did loose hearing in the high frequency range which is permanent and contrary to what Kathy above says I tried (very expensive, state of the art)hearing aids once and gave them back within a week. I do not look forward to the day when I have to wear them.

My MO told me after realizing my hearing had been affected that "had he known he would have switched me to Carboplatin because it's just as effective as Cis but without the nasty side effects." Certainly SCREAMS THE QUESTION...then WHY....Never could get a good answer why Carbo isn't used first other than I did get another MO at Moffitt tell me that there have not been adequate studies to prove that. Remember I was treated 6 years ago.

I think that 6 smaller chemo treatments are the way hospitals are going in order to make it possible for patients to get all of the chemo. I had 6 so cannot speak to 3, but apparently the longer times are much more difficult for the body. I read somewhere months ago about one study which showed that 3 vs 6 cisplatin for head & neck patients made no difference in outcome, or at least for the times considered in the study. But I can't provide the citation for you unfortunately. I see that I may have read the same one your doctor points out.

Regarding surgery for oral cancer, if it is oral cavity cancer rather than oropharyngeal, surgery is the first line of treatment. This is according to the NCCN guidelines, not my opinion necessarily. Definitive radiation is not supposed to work very well with cancer of the oral cavity, perhaps because it is HPV negative. I'll leave that part to the experts.

My PA at MD Anderson told me cisplatin affected hearing depending on where the heaviest radiation was given, or let's say that is what he has noticed among patients. I have minor hearing loss in the very highest range, but I'm told it really won't affect my functional hearing, and I agree. My husband who is not the patient has some hearing loss in my opinion. I've suggested he get tested instead of me, but it hasn't gone over well. Yeah, David, I'm with you that hearing aids aren't all they are cracked up to be, hope your hearing does not decline.

Best,
Anne

David,
What did you not like about the hearing aide? Just wondering for when the time comes.
Thanks
We got our magazine today...could the picture have been any BIGGER??!! Sheesh!

Kathy,

Basically everything. Didn't like something in my ears; didn't like that people could still see and would comment that I had hearing aids despite them being the least visable as possible; didn't like having to carry another remote control in my pocket; didn't like hearing the wind noise if I turned my ear into the wind OR had my car windows down and to top it all off I didn't really notice all that great of difference in my hearing. All this after 2 days of trying those stupid things. I called my ENT and said they are coming back. He had already filed a claim against my ins despite requiring me to pay for them in full. Several weeks later I got a payment confirmation from my ins that they had approved AND paid my ENT. I had to wait 10 days to my money back from the ENT and had to spend my time calling my ins co to make sure they knew that I returned the darn things. Still have not gotten a confirm from either my ins co or my ENT that the ins check was returned so I will have to spend more of my time making sure that was handled properly. nothing to like here....

Now one day I may have no choice but to use hearing aids and hopefully I will be a tad more tolerant or maybe there will be a breakthrough technology wise. lol

My husband is set to begin IMRT and 3 Cisplatin treatments. His surgery last month removed the tonsil which showed negative margins though the tumor was within 2mm of one margin. ALso, when removing a series of lymph nodes there was one nodule of mattted nodes with extracapsular extension. The extension scares me.....hoping the chemo and radiation keep it from spreading. I have read a number of posts....still confused as to how this effects everyting. Thoughts out there???? Thanks for you help and guidence on this.....

When does he start? One thought I had is when Kevin had his first dose of everything he got pretty bad diarrhea. He took meds for that, but then I feel he got a little bound up and it took a week or so to even everything out again. That was where some of his worst pain came in. I remember I actually had to take him by wheelchair downstairs to xray because the pain was so awful he couldn't walk. They did a scan of his belly and colon and it showed tons of inflammation throughout his intestines. That was rough. Just a thought for if that problem arises. We also had more than just the cistplatin too, so that might be why it was so bad.
I'm glad a decision has been made and he's ready to move on. Let the battle begin. Remember we are here for you both.
Kathy

ECE is scary but I too had it. If your surgeon is good hopefully you're in mop up mode... Good luck!

Cisplatin is added here to only boost the effects of radiation (process is called concurrent chemo-radiation), however it does have number of side-effects.

As Christine mentioned, Cisplatin does have high rate of permanent hearing loss and unfortunately there is no way to prevent it like other side-effects. Discuss possibility of having Carboplatin instead along with Docetaxel with your husband's caregiver.

Since your husband will be having radiotherapy, my recommendation is to go for weekly cisplatin so that he can tolerate the treatment and complete it even though toxicity in either way of treatment would be similar.