Update:

Hi everyone,
It has been a few weeks. On 8/11/14 my brother did his surgery- his surgery was 11.5 hours long. The surgery was re-resection of the tongue, skin graft from his thigh, forearm graft to do the free flap and a neck dissection. When the doctors got out of the surgery they said that he did wonderful. We got the pathology report back on 8/18/14. The good news was that the tongue was cancer free (he previously had removed part of his tongue on 6/24/14) the bad news was that it has spread to his lymph nodes. 3 nodes out of 10 came out positive. There was 1 positive lymph node in level 1 and 2 positive lymph nodes in level 4. The doctor said he will need to do radiation and maybe chemo (they said they are going to discuss this with their tumor board and we will meet soon.) Today is 10 days after the surgery and he is leaving the hospital without the trach and feeding tube. They took the feeding tube out on 8/19/14. He has had a couple ensures to drink and a little mashed potatoes. Please give me all your suggestions. Has anyone had 3 positive lymph nodes? Also, what are some other good ideas for soft foods? Is radiation going to be horrible or did he beat the hardest part?

Oh yeah one more thing the lymph nodes were "microscopically" they did not show up on CT scan. When the doctor did the surgery he suspected one but the pathology report revealed 3.

Hi Ak. Do you know if it tested positive for P16? The prognosis is generally better and it is known to respond extremely well to the radiation chemo combo. I wouldn't get too hung up on the staging or the number of nodes, they'll take all that into account when they plan the treatment and there's nothing you can do to change it. For now the focus is on getting him ready for treatment.

He will probably have seen a dietitian by now with relation to recovery from surgery, he should see another as part of the planning for his treatment. He should also be advised to see a dentist. Christine has a good list of easy to eat foods here. (I like the soft scrambled eggs with cheese!) List of Easy Foods

Radiation and chemo is no picnic, but every journey is different. People respond differently to the same treatment, with surprisingly different side effects. Your brother is very young, most of the patients we see are middle aged or older. He'll be stronger from that point of view, and the complication of the recent surgery will be closely managed by the doctors. In any case he is in for a long hard road over several months, but it is a very survivable treatment and the prognosis will be better than many other types of cancer.

Your brother is about to get bombarded with information, and I found the doctors only had a limited time to explain it all. It helps to take notes, you can look things up later and have a list of questions to bring next time. Its all a lot to take in. If he can bring someone with him its also helpful to have another set of ears.

Best wishes to you and your brother. Let us know if we can be of assistance.

I am confused why they are saying radiation and chemo and removed the feeding tube. That makes no sense to me.

I would use that level 4 node as a motivator to keep things moving rapidly. I don't know the pathology of that node but it's getting dangerously close to the lungs.

[quote=Uptown]I am confused why they are saying radiation and chemo and removed the feeding tube. That makes no sense to me.

I would use that level 4 node as a motivator to keep things moving rapidly. I don't know the pathology of that node but it's getting dangerously close to the lungs. [/quote]

Hi uptown- they removed the feeding tube because he can now eat on his own. He just did the big surgery on 8/11 wouldn't it be too soon to do radiation? I worried about it getting close to the lungs too. They did remove them. Does that make a difference?

AK,

I believe from your previous posts, that your brother had a nasal feeding tube - is that correct? Then it would make sense to remove now as long as he is eating.

You stated that the doctor suspected one node, but ended up with 2 others that were cancerous. You cannot always tell by a visual exam that it is cancerous, so there could be others. But any others should be killed off by the radiation and I'm glad his doctors are recommending radiation - better to do this now before it could spread even more.

It is difficult to eat after surgery, and even more so after radiation. I made a lot of smoothies with yogurt, fruits, milk or juice, and of course ice cream! I also added whey protein powder. He can probably eat eggs, soups, yogurt, vegetables (cooked until real soft). Its more about the texture and getting enough calories and nutrition. If you have a blender, use it.

During radiation his doctors may recommend a feeding tube (called a PEG tube, which is inserted surgically into the abdomen area). Swallowing may become very difficult if not impossible.

I didn't have a peg tube and my doctors didn't even mention it. Because of the areas that were radiation on me (sparing the inside of my throat), I was able to swallow - that is once I got past my painful mouth. I did loose a lot of weight but did manage to drink a fairly healthy diet.

[quote=ak123] Hi uptown- they removed the feeding tube because he can now eat on his own. He just did the big surgery on 8/11 wouldn't it be too soon to do radiation? I worried about it getting close to the lungs too. They did remove them. Does that make a difference? [/quote]

I wasn't sure for your post which node the doctor felt would be cancerous versus the 2 the doctor was surprised about after pathology. The other 2 would indicate to me they didn't show up on any scans. That would make me suspicious of others and I would think radiation would be necessary.

Once squamous cell carcinoma gets a good blood supply, i.e lungs, it takes off. That's why I would want the most effective treatment available, which is chemoradiation.

As far as how quick after surgery, it depends on how extensive the surgery was.

Just to add a few things.....As said, further down the lymph chain are negative factors, as well as having 3 lymph nodes involved, so believe they would recommend Chemoradiation or at least radiation. Ideally, the total treatment package for SCC, such as surgery, Chemoradiation, is best kept under 100 days for better outcome, but depends on healing, maybe 4-6 weeks, scheduling, pre-treatment requirements.

It's good your doctors are on top of things. All the best

[quote=OzMojo]Hi Ak. Do you know if it tested positive for P16? The prognosis is generally better and it is known to respond extremely well to the radiation chemo combo. I wouldn't get too hung up on the staging or the number of nodes, they'll take all that into account when they plan the treatment and there's nothing you can do to change it. For now the focus is on getting him ready for treatment.

He will probably have seen a dietitian by now with relation to recovery from surgery, he should see another as part of the planning for his treatment. He should also be advised to see a dentist. Christine has a good list of easy to eat foods here. (I like the soft scrambled eggs with cheese!) List of Easy Foods

Radiation and chemo is no picnic, but every journey is different. People respond differently to the same treatment, with surprisingly different side effects. Your brother is very young, most of the patients we see are middle aged or older. He'll be stronger from that point of view, and the complication of the recent surgery will be closely managed by the doctors. In any case he is in for a long hard road over several months, but it is a very survivable treatment and the prognosis will be better than many other types of cancer.

Your brother is about to get bombarded with information, and I found the doctors only had a limited time to explain it all. It helps to take notes, you can look things up later and have a list of questions to bring next time. Its all a lot to take in. If he can bring someone with him its also helpful to have another set of ears.

Best wishes to you and your brother. Let us know if we can be of assistance.[/quote]

Hello,
He is tested negative for P16. He is a non-smoker and casual drinker. The reason is "unknown" as to why this happened to him. He met with a dietican a couple months ago and he said he felt like he went for nothing as he says he knows what to eat but it is hard to eat after the surgery. He thinks a lot of things taste different now. I know that we have to get him into a dentist soon too. Did you see a special dentist? or was it your original dentist office? we have been taking a tape recorder to every meeting with the doctors lol. there has been so much information that we have definitely been bombarded.

[quote=Susan2992]AK,

I believe from your previous posts, that your brother had a nasal feeding tube - is that correct? Then it would make sense to remove now as long as he is eating.

You stated that the doctor suspected one node, but ended up with 2 others that were cancerous. You cannot always tell by a visual exam that it is cancerous, so there could be others. But any others should be killed off by the radiation and I'm glad his doctors are recommending radiation - better to do this now before it could spread even more.

It is difficult to eat after surgery, and even more so after radiation. I made a lot of smoothies with yogurt, fruits, milk or juice, and of course ice cream! I also added whey protein powder. He can probably eat eggs, soups, yogurt, vegetables (cooked until real soft). Its more about the texture and getting enough calories and nutrition. If you have a blender, use it.

During radiation his doctors may recommend a feeding tube (called a PEG tube, which is inserted surgically into the abdomen area). Swallowing may become very difficult if not impossible.

I didn't have a peg tube and my doctors didn't even mention it. Because of the areas that were radiation on me (sparing the inside of my throat), I was able to swallow - that is once I got past my painful mouth. I did loose a lot of weight but did manage to drink a fairly healthy diet. [/quote]

Hi Susan,
You are correct my brother did have the nasal feeding tube after his surgery. Oh-I see what you mean- the peg tube is totally different. I hope his radiation goes well where he wont need the peg tube. I feel so bad that he has already been through so much. Thank you for the suggestions on what to eat- yes, we do have a blender and also bought a huge brevell juicer. He has had a couple of juices.

[quote=Uptown][quote=ak123] Hi uptown- they removed the feeding tube because he can now eat on his own. He just did the big surgery on 8/11 wouldn't it be too soon to do radiation? I worried about it getting close to the lungs too. They did remove them. Does that make a difference? [/quote]

I wasn't sure for your post which node the doctor felt would be cancerous versus the 2 the doctor was surprised about after pathology. The other 2 would indicate to me they didn't show up on any scans. That would make me suspicious of others and I would think radiation would be necessary.

Once squamous cell carcinoma gets a good blood supply, i.e lungs, it takes off. That's why I would want the most effective treatment available, which is chemoradiation.

As far as how quick after surgery, it depends on how extensive the surgery was. [/quote]

Hi Uptown,
All three did not show up on the ct-scans. During the surgery the doctor suspected one (not sure which one) and that one came out postive. Then 2 more were positive. I think they might recommend chemo-radiation. He told us that when he suspected one (we should do radiation) but iif there is more he might need chemo-radiation. He wanted to talk to the whole tumor board team re: the pathology report. We are meeting with the doctor on Thursday. Which chemo do you recommend?

Unfortunately, I can't really recommend something like that. I'm not a doctor plus my treatment was so long ago, I hope it's outdated.

[quote=Uptown]Unfortunately, I can't really recommend something like that. I'm not a doctor plus my treatment was so long ago, I hope it's outdated. [/quote]

Lol
Well cisplatin is still around! One doctor
Recommended cisplatin and another erbitux. Did you have any postive nodes?

I had Cisplatin and 5FU. I was hoping something more fun was available. By now.

Look at my signature. The T2N2bM0. That is called TNM staging.

T2 is a tumor greater than 2 cm but no more than 4 cm.

N2b means multiple ipsilateral nodes, none larger than 6 cm.

M0 means no distant metastases.

There is a place to see this spelled out on the main website. You cha search for "staging".

Hi everyone,
This morning we met with the whole tumor board from 10:00 a.m. to 5:00 p.m. (we are beat!)

Their opinion was 6 weeks, 5 days a week of IMRT (Tomotherapy machine) (60 to 63 gy)

He will get 3 big bags of Cisplatin every 21 days. He will begin treatment on September 15th-he will go in for radiation and then chemo and have to spend the night at the hospital to monitor him and for him to stay hydrated with the IV. Did anyone else stay in the hospital while getting chemo? At first I thought that he would come home after chemo.

So the chemo doctor told us if we didnt do radiation or chemo the cancer has a 50% chance of reoccurence. If we do the radiation he will have a 70% of no reoccurences and if he doest chemo and radiation combined he will have a 78% chance of no reoccurences. Now we are wondering is that 8% chance worth it? I know the side affects of chemo are kidney failure, hearing loss, nausea, etc) I am worried about the Extranodal extension which makes me think yes chemo is necessary! I also read all of your stories and see what fighters you are! I tell my little brother about you guys all the time! (My friends online, my friends online *PS I would love to meet all of you one day, you are the nicest people ever and have taught me so much. I thank you all).

He went to their dentist (they had one in their facility) and she did an xray and she said that teeth will not need to be pulled out. He is going back to her on Friday to get the flouride trays made (also, she said that he will still need to see his primary dentist before radiation just in case he needs cavities filled) did you all fill cavities before radiation?

Also, do you all think that the surgery was the harder part or the radiation/chemo? He is healing very well from the surgery.

How long did the board discuss your case? It could not have been 7 hours? Did you have to wait quite awhile? Just curious.

It seems like the board recommended both chemo and radiation. What do you know that would support not following the recommendation?

My entire team was all on the same page. Whenever there were a decision with options, we all shouted NUKE IT! DESTROY THE BASTARD!

I wanted the treatment that took every advantage to kill the beast. If nothing else, I knew I would never lose a wink of sleep or spend a single waking minute wondering if more could have been done. If it returns, I will never look back and wonder if....

Your brother is very young and that was factored into the board decision. They took all factors into account. There was surely more than a century of doctor experiences in the room. If you trust them, don't over think the treatment plan. That said, you can always get a second opinion by a different group. If that would help ease how to proceed do that but don't second guess the recommendations. Good luck don

Just a very small note to add to what Don has explained so very well - re your question about Chemo and he nausea associated with it - my son did not have chemo - only radiation (after surgery) and he really had a difficult time with the nausea but he did get through it, so if you are considering the chemo decision based only on the possible appearance of nausea, it is possible to have nausea when only radiation is involved. However - not everyone has a difficult time with nausea and some can sail right through treatment with very little nausea. I know you have found the very best doctors associated with a very good hospital, and their combined years of experience and knowledge should be very encouraging to you and your brother.

Best wishes to your brother. It sounds as if the medical team are going to do very well by him but it would've been a gruelling day with the Tumour Board for you all. The surgery he has had is a bit of a nightmare but the hard part is over in a week or two while radiation and chemo drag on for weeks. It's like a blitzkrieg versus a slow war of attrition.

There's a sort of camaraderie in radiation and oncology centres and staff will take good care of him. He'll need books and videos and games to enjoy while the treatment takes its course. Writing a diary or blog helps too.

Writing a diary or blog as Alpaca mentioned is a great idea for your brother or for you. I wish I had done it because it mades it easier to check back when you want to refer to some specific item of care, and there is a blog forum here where you can start one. The Rad Tx Center that my son went to was really nice and very friendly. They allowed my son and I to visit the room where he would be getting his Rad Tx and they allowed him to bring his own music on CD that they could play for him during the treatment. There was a "cookie lady" that came everyday with cookies for everyone and a "hug lady" that gave everyone hugs who needed a hug. Also a beautiful Collie Dog with her trainer who visited people in the waiting room. I was sitting there one day feeling a little sad and worried and the Collie was sitting a few feet away from me and only approached when I made eye contact with her and sat next to me while I petted her . . and it helped. It was in that waiting room that I met a nice young man about my son's age who approached me after my son left for his turn in the "Rad Room" and said "Go to the Oral Cancer Foundation dot org - they can help." And I did and they did! There are many smiles available in the Rad Room. I remember one day hearing about a lady who put rocks in her pockets so that when the nurse assistants weighed her she could cheat about her weight loss! At one of my son's treatments, he asked one of the nice assistants to take a picture which you can see here:
http://webpages.charter.net/xila/paulrad.jpg

[quote=donfoo]How long did the board discuss your case? It could not have been 7 hours? Did you have to wait quite awhile? Just curious.

It seems like the board recommended both chemo and radiation. What do you know that would support not following the recommendation?

My entire team was all on the same page. Whenever there were a decision with options, we all shouted NUKE IT! DESTROY THE BASTARD!

I wanted the treatment that took every advantage to kill the beast. If nothing else, I knew I would never lose a wink of sleep or spend a single waking minute wondering if more could have been done. If it returns, I will never look back and wonder if....

Your brother is very young and that was factored into the board decision. They took all factors into account. There was surely more than a century of doctor experiences in the room. If you trust them, don't over think the treatment plan. That said, you can always get a second opinion by a different group. If that would help ease how to proceed do that but don't second guess the recommendations. Good luck don[/quote]

Hi Don- Sorry, what I meant by that was we met with the tumor board for a .5 hour, then we had to meet with dentist, then radiation doctor and then chemo doctor. Thats why it took us all day long.

I dont know anything that would give me reason to not follow their recommendations because of course what they recommend is whats best. After researching everything I do see that IMRT and Cisplatin is the best care for him. However, I wonder if the extra 8% chance of non-recourrence is worth the chemo. I worry about the chemo side affects.

I totally agree with you that we want to definitely do everything for this to never come back so that way we dont have to question our choices. That is why we are going to do the radiation and the cisplatin chemo.

Thank you for the advice because it is so true that we do trust the doctors and they are all so amazing with so much experience. I am definitely overthinking the treatment plan because im just worried about all the side affects.
His oncologlist doctor is the chief of oncology and his radiation doctor is the chief of the radiology department. We also have him at a great NCCC. We did get a 2nd opinion at another NCCC before my brothers surgery and they also recommended IMRT and Cisplatin. We called the other NCCC after the tumor board meeting on Wednesday but they werent available for 2 weeks and we dont want to wait. He will be starting his radiation/chemo on September 15, 2014.

[quote=Anne-Marie]Just a very small note to add to what Don has explained so very well - re your question about Chemo and he nausea associated with it - my son did not have chemo - only radiation (after surgery) and he really had a difficult time with the nausea but he did get through it, so if you are considering the chemo decision based only on the possible appearance of nausea, it is possible to have nausea when only radiation is involved. However - not everyone has a difficult time with nausea and some can sail right through treatment with very little nausea. I know you have found the very best doctors associated with a very good hospital, and their combined years of experience and knowledge should be very encouraging to you and your brother. [/quote]

Thank you Anne-Marie! You are so right and thank you for putting that into perspective. We did find great doctors to treat him and that is very encouraging.

I would be hitting this cancer very hard. This is an aggressive cancer.
I see from your signature that there is extra nodal extension present. This is very good reason to do the chemo to try and mop up any stray cancer cells that have escaped. Your brother is young and presumably fit and well. He will cope ok.
Please, hit this with everything he is offered. His life depends on it.
Praying for a Fantastic outcome for your Brother.
Tammy

AK I'm not sure you had your question about staying in hospital or dentist questions answered?

Cisplatin hits pretty hard. They give you hydration (just a bag of saline) in a drip for the two days after the Cisplatin to flush it through the kidneys. Staying in hospital isn't usually necessary, but there may be cases for elderly people or people who live a long distance away for it to be beneficial. In most cases I saw they only admitted people who had complications (diabetes, constipation etc).

Your brother is lucky not to need any teeth extracted. Its a tough period for the mouth in general, and seeing a dentist for a checkup and fluoride treatment is important. The last thing he wants is to have a toothache and need a filling when his mouth is full of ulcers etc. Best to get it sorted before treatment starts.

[quote=tamvonk]I would be hitting this cancer very hard. This is an aggressive cancer.
I see from your signature that there is extra nodal extension present. This is very good reason to do the chemo to try and mop up any stray cancer cells that have escaped. Your brother is young and presumably fit and well. He will cope ok.
Please, hit this with everything he is offered. His life depends on it.
Praying for a Fantastic outcome for your Brother.
Tammy[/quote]

Thank you Tammy. We have decided that he will be doing radiation and chemo. He is fit and well as he worked out 6 days a week before this all happened. He lost 12 pounds after his surgery. We are making him eat constantly before radiation starts. Thank you for the prayers. It means a lot to us.

[quote=OzMojo]AK I'm not sure you had your question about staying in hospital or dentist questions answered?

Cisplatin hits pretty hard. They give you hydration (just a bag of saline) in a drip for the two days after the Cisplatin to flush it through the kidneys. Staying in hospital isn't usually necessary, but there may be cases for elderly people or people who live a long distance away for it to be beneficial. In most cases I saw they only admitted people who had complications (diabetes, constipation etc).

Your brother is lucky not to need any teeth extracted. Its a tough period for the mouth in general, and seeing a dentist for a checkup and fluoride treatment is important. The last thing he wants is to have a toothache and need a filling when his mouth is full of ulcers etc. Best to get it sorted before treatment starts. [/quote]

Hmmm- they are making him stay overnight on the days he does cisplatin
And he doesn't have any complications. They also said that he would do that bag of saline 2 times the week he does chemo. He went to his dentist today and his dentist said he had 2 small cavities but he said he isn't concerned about them and that he can get them filled in 6 months

Although its not the same treatment, I stayed in the hospital for the 5 days of TPF Induction chemo, Taxotere, Cisplatin, 5-FU, back in 2009, as was the protocol. Now they may do it as out patient with a fanny pack, like I believe Don had, but know of one patient last year, another site, who had it overnight, 5 days also. I guess It's probably dependent on the hospital. I can see both positive and negative aspects to this, mainly positive. I'm more concerned with hospital borne illnesses, mostly seen in ICU, severely compromised patients, lengthly stays, having been though them, but we go to the hospital anyway, everyday, for radiation treatment. it's just one of my learned fears that took me a while to get over, but I never forget them.

With Cisplatin, and most other chemo's, other medications may also be administered, besides saline.

Good luck.

Happy to hear that the surgery went well and his tongue is now cancer free! Best wishes through his continued treatments and recovery. I am also starting on soft foods myself and am enjoying creamy (or blended up) soups, yogurt, mashed potatoes, scrambled eggs, and higher calorie protein shakes I've been making myself by adding a banana, oatmeal, peanut butter, and protein powder. Making these helps me keep my daily calories at 2000 and protein intake somewhere between 80 and 100 grams (this is close to my body weight and has helped me maintain my weight while on a restricted diet). Glutamine is a good supplement that helps with recovery - the nights I added it to my shakes I saw a major improvement in the swelling the next day.

HI there.. I responded to your questions about cisplatin in a different forum. I mentioned there that my hospital made me stay overnight as well. Cisplatin is very hard on the kidneys. My hospital kept me in to run hydration overnight after I received my chemo. It was a pain to be up hourly to pee but in the long run my kidneys are happier and I was well hydrated.

hugs.

So my brother did one big bag cisplatin so far and 8 IMRT radiation treatments. He was just showing me his tongue and it seems like it's turning brown? And a little detached at bottom? Is this normal?

Also, he lost 7 pounds in a week so the doctor said he better start eating or the peg tube will be going in. He said that Everything tastes nasty to him. He had pizza the other day and it tasted like cinnamon sticks.

Hi AK,

Radiation does a lot of damage to the oral cavity. I had lots of sores and other weird things things happening to my tongue, other areas inside my mouth and also the skin in the radiated area. Discuss all issues with his doctors. There are rinses (magic mouth wash) which helps with some of the issues, and creams that can be put on the skin (but never before the treatment, only after),

Taste is one of the first things to go unfortunately. For now it is all about getting the right nutrition so use the blender to make healthy and high calorie smoothies.

The next several weeks will seem like the longest weeks of his life because so much time is spend getting treatment, going to doctors and living with the aftereffects of treatment. Focus on the future - that is what kept me going.

Yes Susan is right about the weird things AK. Symptoms, side effects, taste, dry mouth, sores, oral thrush, constipation, nausea, scary dreams, it all changes on sometimes an hourly basis. None of it will be new to the medicos he sees every day during treatment, and most things can be alleviated if not fixed. He needs to keep on top of the changes, both mentally and physically. Its easy to let something get out of hand. Constipation for example, is entirely avoidable and can make life completely unbearable if allowed to go too far.


You'll hear this many times, but it is critical he get fluids and calories in. Its easier said than done. You know you need to eat, but everything (sometimes even water) makes you want to throw up. And you can't force it down. If your brain tells your stomach this food is off like the taste signals are telling you, your stomach says no and it comes back up. Vomiting over a raw throat is painful and distressing.

No amount of nagging will help, but its something he desperately needs help with. He knows he needs to eat but he will only be able to come up with a limited number of ideas. After many many failures my wife ended up feeding me a poached egg on rice with a sauce made of peanut butter and cream. It sounds ridiculous, but the taste combo worked. I found I could taste peanuts, and that sent the "its ok" signal down to the stomach. I lived on that, and boiled rice and milk for a couple of weeks.