I am a 58 yo male and was diagnosed with stage 4 squamous cell carcinoma back in March 2012. Had CT and MRI to determine the spread and had a 10 hour surgery on April 27. Most of my tongue was removed and a flap was reconstructed from a section of skin taken from my left thigh. For the most part I live a very healthy life. Work out at the gym everyday. don't smoke or drink. My father did have esophageal cancer but survived for 15 years after radiation.

At this point, I am awaiting the recovery from the surgery before the radiation and chemo begin. It will last 33 days for the radiation and only 2 chemo sessions, one at the beginning of the radiation period, and the other at the end. I will have to stay overnight at the hospital for the chemo treatments.

I recovered pretty fast after the surgery and was discharged from the hospital in less than 2 weeks, almost a week earlier than the original estimate. One surprising thing is that I can still speak, not as clearly as before cancer but everyone said that they can understand me pretty well. The doctors were pretty surprised. The radiation oncologist actually said he was "dumbfounded" that I was able to have a conversation with him.

The surgeons remove 90% of my tongue, and all the lymph node from the neck, jaw, etc. a total of 55. The pathology report came back pretty positive, that there was no cancer found in any of the 55 lymph nodes. That is why I don't need full chemo, just 2 sessions to be on the safe side.

I do have a very strong support network, from my church, family and friends. My church has been rallying around my case to have special prayer group meetings after the service for several weeks. The brothers and sisters provide overwhelming support of visits, email, some even offer to help with housework. I exchange email daily with my brothers and sisters back home and that is also a source of strength. My family has been by my side all this time. Last but not least, I have a strong faith and through prayers I found the most strength. I think all of this accounts for my speedy recovery after surgery. I am not out of the woodwork yet but based on what I have seen, I have a strong feeling that I will do really well.

Hi there - welcome! I'm from Mississauga - are you being treated at PMH? Who was your surgeon. Misskate a member here has had her entire to tongue removed as well and is doing amazing, she speaks eats and tastes! Radiation will make you stiffer in the neck area if you've had a neck dissection. We're here if you have any questions - I've been through it too. Hugs!

Welcome to OCF! Glad you have found our site to help you with info and support. Sounds like you have a good attitude and are doing very well with your recovery. Wishing you all the best with your continued recovery and future treatments.

Hi

we had a coincidence: almost the same number of nodes removed, and no cancer in then.

Just wondering: my doc did not recommend chemo or radiation, i guess because my tumour was smaller? Just wondering...

Hi Cheryl,

I had surgery at TGH (which is in the same UHN as PMH) by Dr Irish and Dr Goldstein. I'm very interested in finding out h ow other patients with similar complete tongue removal recover, how fast and how soon were they able to east, speak and taste.

What you mentioned about misskate is very encouraging. How soon did she recover the taste, speech and eating? Did she have a reconstructed tongue also. That was amazing.

Here is a link to misskate's profile. Thru this link you can read her profile, her posts, and even contact her thru a private message (PM).

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showprofile&User=4087

Thank you Christine. I'm hoping for another full recovery. I do feel good and my spirit is strong.

Joseph

I picked up your positive attitude from your very first post. Im a firm believer that having that type of attitude really does make it easier and you will do better than someone who is angry or depressed. Keep that going and keep your family close and it will all be just a distant memory next year this time. It sounds to me like you are making excellent progress and your doctors are expecting a full recovery. Keep up the good work!!!

PS... Miss Kate is a great example of what hurdles a person can overcome and go on to thrive.

Hey! You are darn lucky! Dr Irish and goldstein we're my surgeons! Thats probably the primary reason you can talk etc... Seriously they are the best! My tongue looks almost perfect though its still a bit chubby at times do to lymphedema. They did my surgery a year ago February! Who is your rads dr? Mine is dr. Cho. Hes also very talented - but not terribly personable! Not that I care... As long as he did his job well. Radiation will effect your tongue for a while. It keep doing your exercises and it will heal. miss Kate is truly an inspiration. You'll get through this.

Hi Cheryl ,

Dr Bayley is my radiation specialist. he is very personable. just saw him 2 days ago. He Actually said he was dumbfounded that i was able to have a conversation with him.

Kate is certainly an inspiration and with her I'm even more hopeful that i will regain my speech, eating and taste!

Joseph

hi Christine,

my doctor actually told me before surgery that i likely wouldn't speak or easy for up to a year. so i was pretty pleasantly surprised when i was able to talk after the surgery. like cheek said, my Drs. were the best in this field, at least in Canada. that's one of the reasons. doctors always tell you the worst case scenario. seeing what kate was able to do even shortly after treatment, i feel very positive!

Hi Cheryl ,

Dr Bayley is my radiation specialist. he is very personable. just saw him 2 days ago. He Actually said he was dumbfounded that i was able to have a conversation with him.

Kate is certainly an inspiration and with her I'm even more hopeful that i will regain my speech, eating and taste!

Joseph

Hi,

I guess you are lucky not to need chemo or radiation. Perhaps because your tumor was not as serious.

Me oh yes I had to chemo and radiation - I was a stage 2 - with perineural involvement - and a node that popped up between dx and surgery. I had 40 nodes removed. One had a bit of cancer outside it that reinforced the radiation decision ( dr. Irish said in his opinion I was cured. This was a safety measure... Just in case. ) did 33 ads and 2 chemo... Theyll keep you in overnight for chemo. good luck you'll do fine... If you need anything let me know. Hugs - you'll get through it,

hi Cheryl ,

What type of chemo did you receive? They are planning the same Tx for me: 33 rad and 2 chemo. I will have to to stay overnight for the chemo.

Thank You so much for your support.

It's cisplatin, it's very hard on the kidneys that's why they keep you in overnight, this way they pump you full of fluids, and keep you jogging off to the bathroom all night. They'll test your hearing and send you to the dental oncologist at PMH... Have you met your medical oncologist yet?

Chemo for me wasn't too bad... Some people have a brutal time of it.

Good luck.

Hi Cheryl,

Thanks for the info. I'm diabetic so my kidneys are not at their best. I hope the Cisplatin is not going to kill them. So how do they administer it, through iv?

Yes, they have booked the hearing, mask, swallowing CT, chemo oncologist, and dental pathology appointments for me week. Will be seeing the oncology surgeon June 8. He is the point person for my case . I guess radiation starts after I see him.

Joseph,

You are already my hero!

Hi there.. They will give you a room (I had one on the 18th floor it was private and had a great view - they'll run an IV of fluids and an anti emetic and then the chemo. Then they run fluids all night - I think a lot of chemos are hard on the kidneys... This one in particular has a reputation that's why they keep you in - its protocol. Plus chemos of course can cause severe nausea and vomiting - so the forced hydration lessens the possibiliilty of you going home throwing up a lot and ending up in the hospital longer because of dehydration.

Not many hospitals have this protocol.

Next day they'll squeeze your rads in before kicking you out with a fist full of prescriptions.

After your treatment dr Irish and bayley will tag team you... You'll do a check up with bayley - go home to recover - then at three month intervals you'll see Irish and bayley... Once your on the mend. And at the three month mark post treatment you'll have a ct. unless of course you have a problem and need to be monitored more closely.

They'll give you pamphlets read them and do what's in them.. Have they set up your appointment for a peg yet?

I had one but didn't use it. I just drank my nutrition for about 4 weeks (the worst weeks)... What they don't tell you is radiation is cumulative - the two weeks after treatment are the worst!!! Gene Simmons and I know each other well as they had a marathon on during my recovery and between that and some forensic shows I lived in a reality show haze between naps.. Though I did walk my dog...

It's not an easy treatment and by the standard norm I was Blessed as for me as horrible as it was - I wasn't that bad! If you are diabetic - diet is very important as is hydration. They dietician kind of let me do my own thing as long as I didn't lose too much weight - (I'm a veg head so my protein came from a scoop or two of vegan protein powder - which is actualy a good option for you as it utilizes stevia (no glycemic impact) not the standard sugar found in most powders - I would add a scoop to my boost or ensure (they have a diabetic brand) and hit my required protein intake plus a little more daily)

Good luck with all your appointments - push to start it quickly - I know that sounds unwise but I was out of surgery and into rads at the 5 - 6 week mark. and ask about the ct results when you see your rads dr. My faith was a tad shaken when he said "if there was something to note then I would have" the look on my face told him I didn't buy it (sorry I expect that when you come not see me you know exactly what's up... Spend a minute and read the damn report) after some cuffuffle where he sent a student to read it came back and freaked me out - about a chest ct which I later found out was normal - he went on to tell me that my head ct was just a baseline scan to determine where to place the radiation.

That evening I called my nurse (still upset about the chest ct) and she said he wanted to see me the next day - at this appointment (I thought he was going to reassure me about the chest ct) - he proceeded to tell me I had a 3 mm node highlight on the other side of my neck and he was rewriting my treatment to include that side - just in case. It could very well have been an infection, or inflammation as I'd come back from Mexico 3 days prior to the ct.. But I was okay with the extra treatment. My concern in all this is that had I not asked he might not have changed my treatment and on the off chance it was cancer I could very well have been facing a recurrence.

Re the chest ct I talked to my family dr. And he actually read me the report saying it was identical to my first one and everything was clear... This was 8 mos after the incident!

Anyway, my point in all this is. It's a fantastic hospital with amazing drs - but you still need to advocate for yourself. Take care... And good luck...

Hey Cheryl,

Sorry you had to go through all of that. At least you caught it now.

The hospital is very good and the docs are great, the nurses are fantastic. All the nurses have a very positive attitude, except for one, I was very happy with them.

One thing actually got missed, they forgot about the stitches on my 3 ft incision on my left thigh. When I asked Dr. Bayley when I saw him last Thursday, he said he will get someone to take care of it, but no one has yet. The only contact I have is Dr Irish's secretary so my daughter has been emailing her asking about this. She has been a great supporter and advocate for me, asking lots of questions, doing the research on site like this one, and asking her doctor friends.

I hope I make it through the chemo and radiation alright. I read with horror with the type of reactions people have in the other forums and frankly, I am a little shaken up. I can only pray for extra mercy from God!

I read that it is better to have many lighter doses than few strong ones. I don't know if it is the case for me. I will ask the chemo oncologist when I see him.

I've had a G-tube put in while I was at the hospital recovering from the surgery. I need to use it because of my complete glossectomy. I cannot swallow at this point in time. I have been feeding through it entirely ever since. Yhey've given me Isosource 1.5 for food, but the dietitian for some reason only prescribe 5 cans a day, which only provides 1800 kcal, which is not enough. So after talking to the home care dietitian, I increased it to 8 cans daily, which provides a more reasonable 3000 kcal. I'vs lost 25lbs and want to regain some of it back.

David,

You are very kind and supportive. We all need some support here and there to get us through this fight with the terrible disease. They say the most important ingredient is a positive attitude which I am doing my very best to maintain.

Joseph

I may have missed what chemo they are planning for you, but I would strongly encourage you not to let them gamble with your life with Erbitux. I did and I lost that bet.
Carboplatin is less damaging than Cisplatin yet being platinum based still does the trick on oral cancer tumors.
Bear in mind, I am not a medical doctor and this is just my opinion based on my personal experience ( although my MO ditched the Erbitux for my second TX since in his opinion, if the Erbitux had done its job, my cancer would not have come back. He's working on a test to identify the 50% of us for whom Erbitux is worthless but so far it's just luck of the draw.)
Keep up the good attitude and you will do fine
Charm

Hi Charm,

Thank you for that important piece of information. I have not been told which type of chemo yet. I guess it will be discussed when I meet the chemo oncologist. I have heard from other posts that say the same thing that carboplatin is less toxic than cisplatin. I will do more research and push in that direction with the oncologist..

I plan on coming out of this in one piece and have complete recovery.

Hi - you had a very similar cancer to mine I would bet that you're getting cisplatin, hence the hearing tests. They do the big doses at PMH - the small ones for this type of cancer isn't the protocol, but they may do if you ask them. That just means more time in the hospital. But with your medical history it might be more wise. Try adding protein mix to your feed it will help with strength and healing. - you'll get through it. Okay think positively !

Hi Cheryl,

It is sounding like cisplatin but I will know for sure when I have the radiation planning meeting with the chemo oncologist. I hope I will get through it without the side effects being too strong.

Hi Joseph,
My husband had Cistplatin, 5FU and Taxotere. He has partial hearing loss now and we are pretty sure it is from the Cistplatin. Just an FYI to watch for, but it works, so we would rather have had IT and get a hearing aide!!
Best of luck to you in this journey. We are all here for you!!
Kathy

Hi Kathy

Thank you for sharing your husbands experience. Other than the hear loss, did he have any other serious side effects such as kidney damage? How much hearing did he lose? Does he need hearing aid now?

I am concerned with hearing loss and also kidney damage because I have been diabetic for over 20 years so I also have loss some kidney function.

There was suggestion that more smaller doses may be less hard on the body. Right now, they are suggesting 2 chemo, one at the beginning and one at the end of the 33 radiation Tx. I will bring it up with the oncologist when I get to see him next week.

Thanks!

Normally Cisplatin is given in 3 large doses every 3 weeks or smaller weekly doses. Many of use who have had the 3 large doses have skipped the 3rd one due to being too sick. Usually patients can tolerate the smaller doses much easier than the big dose schedule. Be very cautious of hearing loss and kidney damage as both are irreversible. Please talk this over in detail with your doctor.

Goal #1 is to kill the cancer and keep the patient alive.

Goal #2 see Goal #1.

Nothing matters post Tx if you are not cured. That said you should inquire about the weekly bags of Cis as they seem to (soley by accounts from people on this site) produce less side effects than the old standard of the 3 big bag method or even ask about Carbo instead of Cis which, according to all the MO's I've talked to and I quote, "is just as effective as Cis but without the nasty side effects." This was first said to me 6 years ago and I've heard it throughout the last 6 years of recovery so it just baffels the mind (1) why a study wasn't done that prove or disproved this? and/or (2) why Carbo isn't used first, especially on HPV+ presentations?

Hi Christine and David,

I completely agree that the whole point is to cure the patient and I do want to be cured. Having said that, I have gathered that there are several possible alternatives to 2 big cisplatin doses, smaller more frequent doses and cardoplatin. These are questions I sure want to ask my chemo doctor when I see him sometime next week. The appointment is still being scheduled. This being the long weekend slowed everything down.

Thanks!

Joseph, here's one more member on your side and pulling hard for our team.

Hi David2,

Thanks for your support. I can use as much as I can get.

I notice that I am gaining some weight, on average about half a pound a day in the past 3 days. This is great. The stronger my body, the better I can deal with the side effects of chemo and rad!

Hi again,
Yes, eat, eat, eat!!! Gain as much as you can now because you WILL lose. Kevin lost 56 lbs total. He had it to lose luckily and looks great now. If he doesn't eat a lot he loses still.
As far as kidneys, they are fine. He had 2 big doses of Cistplatin along with the other 2 chemo drugs, but somehow handled it. He got quite sick the first round, but the second he did very well. They reduced the 5FU a little on the second round. If you have the potential for kidney issues and you know it, hopefully they will rethink the Cist.
Have a nice weekend and EAT!!!
Kathy

Hi
I has the cisplatin two cycles of it . I had a bag each day along with anti sickness and saline water. I also had anti sickness tablets which didn't work. It was not great and took a week to get over each cycle. I have tinnitus and ear problems but kidneys are fine I think it was easier to tolerate the way I had it together with the radiotherapy. It is doable and if it works you got to do !
I couldn't taste anything but am getting fit back more and more and I'm now nearly a year out
Take care of you
Jayne

Awesome Jayne!

Hi Kathy,

I'm doing my best to gain weight and get more fit. I'm still using the Gtube but supplement the meal replacement with real food and the body seems to be much happier with real food. I stated to gain weight as soon as I did it. Unfortunately I have a minor set back. infection has developed on the floor of the mouth where there was a T junction of incisions. It formed a hole going down to the throat. I was immediately readmitted. It was so sudden I didn't even pack anything.

The great news though is that my live X-ray swallowing study passed with flying colors, so I can have liquid food by mouth. But in light of the infection, I Can't take anything by mouth until it all clears up. Bummer!

They toke a CT scan yesterday to confirm the infection extent and the contrast dye caused my face to puff up and my skin to itch. Apparently out will go away once it get flushed our of the system.

Oh well, two steps forward, I step back, but still moving forward

Hi Jayne,

So you had many small doses of Cisplatin? I heard that lessens the side effect compared to a few big doses. Do you know the doses you receive each time and how many did you get in total? It is good to know that you didn't have kidney damage, that's my biggest concern.

Currently we are seeing 2 delivery methods when using Ciplatin. The first I call the Big Bag Method the patient receives their first bag the first day of rad (before rad); the 2nd appx 15 rads or days later and the 3rd on the last day of rad (before rad). Many don't get the 3rd because they are to sick and/or their cancer is responding as hoped for. Some have Carboplatin substitued for the 3rd. This method has been used the longest and is considered the standard. The second method delivers the same quantity of chemo but in 6 smaller weekly doses and most that have had Cisplatin delivered this way have not complained about the typical side effects as those of us that got the Big Bag method. To my knownledge there has never been a study judging the effectiveness of method number 2 vs method number 1 nor has there been a study comparing the effectiveness of Carboplatin vs Cisplatin.

Hi sorry about the infection... You definitely need to boost our immune system, real food will help when you can eat again. With a history of diabetes I know healing can be wrought with complications - hopefully the fistula will heal up quickly. Good luck.. I glad to see they're on the ball with you. Say hi to dr. Irish if you see him for me... Cheryl de luca... Hugs!

Oh no....sorry about the infection. Hopefully you can get it under control quickly. Yay on the swallowing test!! That is good news and soon you will be back to solid food!
Kathy

The infection is certainly a diversion but should not be serious enough to change things much, perhaps delaying the start of the chemo and rad.

The fluid draining out has slowed down meaning it is mostly done. When out stop completely, they will take the drain out and let it seal up. That will be the beginning of the healing of the infection. I'm on IV antibiotic every eight hours.

The infection might be related to my diabetes. Because wound heal slower.

Hopefully I will go home soon and continue the journey.

I can't wait to start eating real food. This meal replacement stuff doesn't bother me as such but I find I'm getting sick of its smell. I swear I smell like that in my breath. Can't wait to not have to take that stuff.

I hear you on all counts - heal up you'll be good in no time!

Still at the hospital nursing the infection. The contrast dye they gave me for the CT scan its still leaving me with rash all over, but the puffing was gone.

It may be a few more days before I can go home. At that point the home care nurse will take over the daily change of the gauze at both ends of the opening. I don't feel any pain, more discomfort. I look really funny now with a thin gauze hanging out the corner of my mouth tape to my face. I really don't care how I look as long as I get better and finish off the chemo and rad.

One positive note is I'm definitely gaining weight, now at 135.5 lb. My goal is 145 before chemo and rad.

Hi, Joseph
glad to hear you are doing being and gaining weight, and that the pain is down to a managable level. You've got a great attitude that will serve you well through the rest of the treatment!
Maria

Hi Maria,

Thanks for the encouragement. As it turns out, I was allergic to the antibiotic Clindamycin so they changed it to Metronydazole. We will see if it does the trick. I'm expected to be in the hospital until Friday.

Saw the chemo doc today. Didn't explain much, just said he thinks I may not need chemo. May be because of my infection. He said he will discuss it with my radiation doc and he will explain everything.

I'm not unhappy if I don't get chemo. I just don't want to compromise my chance of cure. Decisions, decisions.

I'm going to be in the hospital until Monday and they will decide at that point when I will go home. The infection is under control and the opening is healing nicely from both ends. They changed the antibiotic from IV to oral, Gtube in my case.

Patience is the word.

Good luck. Keep us posted

Awesome - not fun being stuck in the hospital healing is good though!

Actually didn't get out that Monday. They wanted to keep me longer and now is almost week later. I'm pretty sure this time I'm getting out next Monday. This stay is longer than the one after surgery.

The good news is everything is healing well and they have taken me off all antibiotics because the infection stopped quite a few days ago. They also stop the packing in the floor of the mouth, and there is only a tiny bit under the chin.

Just saw Dr. Irish, the surgeon and he was happy with the progress of everything. He wasn't concerned with the infection because it hasn't impacted the timing of radiation. He will book an appt with Dr. Bayley, the radiation oncologist, for me to plan the radiation. Chemo is of the table, which is good.

Found out that the hospital has a lodge for chemo and radiation patients during treatments for out of town patients. Since we live an hour away, I qualify. The cost is low and I will save a ton of time and energy and not having to get someone to drive. Great solution all around!

Yup they're great at the lodge..l he went to town removing 55 nodes! I saw hm last week as well. He really is quite terrific. good luck on rads.

Hi Cheryl,

I am out of the hospital now, and the wound from the infection is 90% healed. It will be another couple of weeks before it will be completely healed before they can start radiation. Haven't got a schedule yet but will when I see Dr. Bayley. Still waiting to get that appointment.

I will be back next Thursday to see Dr. Golstein to check on the healing of the infection wound and hopefully everything is fine.

Right now the home care nurse is changing the gauze packing below my chin.

Did you stay at the lodge when you went through the treatments?

Joseph

Hi there... glad to hear you're doing well! I was there last week to visit dr. Irish... had a panic attack over something small and I guess I needed reassurance that everything was fine. ;o) Which he did quite well!

I live in mississauga and actually was okay enough to drive myself to the hospital daily. I was dropped off the chemo days, and was picked up the next day by my husband. And a friend drove me one time - the rest of the time I did it myself. I was very blessed that I did okay with the treatments - for most it is not an easy thing. This by far wasn't easy but I got through it without a lot of the issues others have. I was blessed in a big way. I hear the lodge is great though and the have a shuttle etc... it really is worth it if you are from out of town and have to travel any distance. Good luck with everything and don't let them keep you waiting too long. I was a bit of a keener when it came to treatments. I had booked my rads appointment three weeks to the day post surgery, and saw my radiation guy and dr. Irish the same day - Dr. Irish said I'm recommending you for radiation and chemo - (he said a lot of other things like, it was insurance though he believed I was cured) and it may be about 6 weeks before they start them. I said no I start in three... I already had my dates, scans, and mask making set up. If you are feeling good push to get it done. I know you need time to heal but once you are at that point it's good to move as quickly as possible. Hopefully chemo won't be too bad... and either will rads. Buy some glaxal base... it's great for your neck skin. (after you're healed of course) take care!

Just found out that I won't be seeing the radiation oncologist until radiation starts. Her secretary said rad is scheduled and they will tell me in the mask fitting appointment Monday. I definitely won't be getting chemo.

Actually, the mask fitting appointment turned out to be also the radiation planning appointment. I saw the radiation oncologist today and the chemo oncologist also. I found out there was positive margin in a small area which is news to me. All along I understood that the margin was tight but not positive. Since the margin is positive, I would have to take chemo. The chemo doc was telling me it was my decision. It was just very confusing.

In any event, they want to start chemo and rad as soon as my infection wound heals, now tentatively set in about 2 weeks. By then, it will be just over eight weeks after surgery.

the chemo will be 2 or 3 sessions of cisplatin and I will stay overnight for each.

I just want to get better, if chemo is what is needed, then it is OK. Will have to deal with the side effects later!

Good for you. Do the chemo. You have to hit it hard the first time. Give it all they got right from the get go.
Good luck and keep in touch.
Kathy

Hi there! Kathy's right hit it hard from the start... chemo really isn't that bad! (well... At least it wasn't for me everyone handles it differently but if it helps it's worth it! Hugs!

Simon managed chemo just fine. I agree with the girls here - hit it as hard as you can. Good luck, Joseph.

While we were staying at the Hope Lodge there was an older lady going through radiation and the 3 doses of chemo and she did pretty good. I was amazed she was eating when my husband had already quit eating even 1 bite. She looked pretty good most days and really was a trooper. I often teased my husband that he was getting the baby doses, Cisplatin 6 times weekly while she was able to handle the 3 bigger doses. Looking back now I think he would of had most of the same issues even if he didn't have the chemo and just had gone with the radiation.

What chemo did they discuss and how often?

David I can probably answer this since Joseph's being treated at my hospital... different rads dr., not sure who the MO is, but likely it will be cisplatin... they do the three bag method and often miss the last bag. He has the same SO as I do.

I'm sure he'll be back to pipe in... ;o))))

I finally got the all clear on my infection wound to start radiation on July 9. So far I've had 4 sessions and they seem fine. I also had my first chemo on July 10 with cisplatin. They gave me several anti-nausea drugs and electrolytes before putting in the brown chemo bag. The following morning my face and body were all swollen, but not as bad as when I got the contrast dye for CT. I felt some nausea on Wednesday and lost my appetite. After breakfast at 8 am, I felt full all day. Finally I had to force myself to have half of my normal meal at 8 pm. Today, I still have the same feeling but much less pronounced. I was hiccuping all day yesterday, not fun but beats throwing up. Every time I try to drink something through my mouth, I feel like I want to throw up. So I hydrate myself using the G-tube. Seems to be working so far. They prescribed 2 days worth of anti nausea drugs and I have been taking them religiously. So far it has been keeping the nausea largely at bay. Tomorrow I will finish the drugs. There is a back up drug I take only if I need to. So far so good.

I also felt more tired than usual after the chemo, had to take a few naps a day. I guess it is a normal reaction.

I've heard from various people that the second chemo is going to be much more challenging. Is this true? I will be getting mine in 3 weeks.

Joseph

I found it the same throughout... But everyone is if fervent - if you can't drink at least continue to rinse, and dry swallow - hugs!

It is very normal to be tired and want the naps!! Take them. You are now in fight mode so remember to baby yourself. rest, rest, rest!
Kevin actually did a little better with the second round of chemo. Not sure why, maybe because we knew what to expect? Maybe because we were in total battle mode by then? He did randomly vomit. It was fine one minute and the next he would hug the toilet for a bit. Then he would be fine again. Often times there was no warning, just wham!
Glad you are on your way in the battle. Keep us updated and know that no matter what you are going through, one of us has gone through it too, so keep asking questions.
Blessings,
Kathy

With Cisplatin it is a cumulative effect like radiation so the side effects are going to become more intense the farther into treatment you go.

Here is a great article from Consumer Reports pertaining to anti nausea meds for the cancer patient, a very good read.
http://www.consumerreports.org/heal...drugs/Drugs_to_Treat_Nausea_Vomiting.pdf

It does list Cisplatin, as having a high rate of nausea and vomiting risk, something that is amplified with radiation. The nausea will get worse as you are ramping up on the pain medications as the opiates also cause nausea and vomiting as well.

"An excerpt:the evidence that is available indicates that granisetron, ondansetron, and palonosetron help alleviate those conditions in 47 percent to 62 percent of the peo- ple. Only granisetron and ondansetron are avail- able as pills, and the evidence does not indicate that one drug in pill form is clearly superior to another in this class. So again, we would recom- mend generic ondansetron tablets based on cost.
Radiation-induced nausea and vomiting
Both granisetron and ondansetron have been shown to be similarly effective in preventing nau- sea and vomiting following radiation therapy for cancer. Generic ondansetron tablets would save you $50 or more over granisetron, so we recom- mend it as our Best Buy choice if you�re undergo- ing radiation therapy and your doctor has decided that an antiemetic is appropriate for your situation."

One thing that the article states is that Ginger has been used favorably to ease nausea in studies as well. I will testify to the effectiveness of this however I wouldn't recommend this for anyone in treatment as Ginger is also a natural blood thinner and can have interactions with other medications, as will other herbs and natural remedies so talk to your Oncologist before exploring natural alternatives.

What we've noticed on the boards is that those patients who've focused on hydration and nutrition have an easier (relatively speaking) time through treatment and seem to "hold up" better. Hydrating is going to ease the nausea and help reduce the strain to your kidneys that all of these drugs are causing.

To emphasize the importance of nutrition, over 20% o all cancer patients die of malnutrition, not the cancer or treatment of. My guess is that that figure is most certainly higher in Oral Cancer patients due to the nature of our disease and the difficulty of delivering said nutrition. Due to the bodies natural response to both the cancer and the stress associated with the cancer experience your body is already not absorbing nutrients the way it should and is being put into a hyper metabolic state trying to heal itself from the effects of treatment. This creates a dangerous situation and usually leads to cachexia, or cancer related wasting syndrome where the body begins to catabolize it's lean muscle mass into energy and amino acids to throw at the immune response.

The hormones that trigger the immune response in the body also have the unfortunate side effect of reducing digestion and absorption, in addition the bodies cortisol levels become elevated (the hormone the body produces as a reaction to stress) furthering digestion/absorption issues as it counteracts insulin which is important in the metabolism of carbohydrates and fats for energy. To add to the problem, most of the medications that are prescribed to the cancer patient also constrain testosterone levels (opiates, anti-depressants etc) which is important in maintaining lean muscle mass and protein synthesis in the body.

So, the question is what steps can we take to give ourselves the best chance at surviving treatment and the effects of cancer? The few things we can control and the most important really after choosing our medical professionals is our attitude and our nutrition.

There are few ways outside of the harsh drugs used to treat Cushings Syndrome to control Cortisol in the body, however the ways to do it are easy stress management techniques. Stretching (I love Yoga or Tai Chi), walks, music, deep breathing, prayer, meditation, reading, movies etc. Your bodies cortisol is highest in the morning, lowering it then helps control it throughout the day so do something before you start the day to relax and lower your cortisol.

Limit your caffeine intake as well as it boosts cortisol, and can hinder sleep patterns, an issue you'll have also due to opiates (insomnia is a common side effect of opiate pain meds)...getting around 9hours of solid sleep reduces cortisol. Nutritionally Omega 3 fatty acids have been shown to reduce cortisol, which leads me to nutrition...a favorite subject of mine.

Now most of the Dr's and people on these forums will recommend liquid meal replacements like Ensure Plus or Boost (Carnation VHC is now Boost VHC) and they'll recommend 2500-5000 calories of whatever you can get down to help maintain weight, and in many cases this is actually part of the problem due to what these meal replacements are made of.

All of these meal replacements use corn syrup, and oil (canola, corn & soy) to deliver their calories, soy protein for protein, and then chalk them full of isolate vitamins and minerals, which are more difficult for the body to absorb. The issues with this are many so I'll explain in detail with the hopes of it making sense. Due to elevated cortisol levels and their effect on insulin, it's important to control blood sugar levels, which means limiting simple sugars and starches. Soy protein is one of the slowest proteins for uptake making it a poor choice for top level athletes and cancer patients alike due to their systems need for quick absorbing proteins. Lastly the oils used to increase calories in a mixture of Canola, Corn and Soy.

Now I'm a fan of getting your calories from fat (higher percentage of fat in the diet ups testosterone in the body that helps maintain and build muscle) but understand this is also a contributing factor for nausea as high fat diets actually cause nausea. Oils are a great way to add calories too and Canola is considered the healthiest due to it's the highest in unsaturated fat, however it's lower in monounsaturated fat then Olive Oil. My big issue here is that these are all Omega 6 fatty acids without the balance of Omega 3's which still leads to insulin resistance and metabolic syndrome, which your body is already experiencing due to the cancer experience as described above. It's estimated that western culture's diet now has a disproportionate ratio of Omega6/Omega3 by 20-30/1 where our ancestors were about 1/1, to 2/1.

Ketogenic Diets, or high protein diets have had success treating insulin resistance and "trick" the body into using fat as energy (both stored fat and fatty acids) by breaking them down to keytones. High protein diets though are usually are very high in saturated fats (bad) and puts an added strain on the kidneys, which when going through cancer treatments are already strained due to chemo, opiates and other drugs.

Where I haven't seen a study on this, I believe from my research that using a Ketogenic Diet focusing on high fat (poly and mono unsaturated fats with a balance of Omega6/Omega3 fatty acids of no more then 6/1, preferably lower), fast uptake protein (whey is the fastest) ,plenty of fresh fruits and vegetables(studies show organic fruits and veggies contain higher concentrations of vitamins and minerals, unlike isolates these are easily absorbed by the body), and coupled with relaxation techniques that help lower cortisol would significantly improve survival rates and how patients stand up to the brutal treatments we have to endure.

My thoughts are to use a liquid/blenderized diet high in good fats as described above, fast uptake whey protein and juiced/blended fruits and vegetables divided into 6 "meals" per day to stabilize blood sugars and counteract the metabolic syndrome patients experience to increase survival rates simply by making sure they have the proper nutrients their body needs to maintain lean muscle mass.

Wow that's almost a book...I told you nutrition was my favorite subject. Anyway if you need thoughts, recipe ideas etc I'd be glad to share. Keep hitting the anti nausea meds and keep the nutrition rolling, in whatever form you can keep down.

Eric

Great post Young Frack

Thanks Cool Frack, I'm doing research right now and putting together a treatment nutrition plan based on these concepts

I strongly concur with getting as much hydration as possible. My brother went into chemo/radiation with a significant kidney disorder, and had been treated for 5 years by a nephrologist. In fact, his kidneys nearly excluded him from chemo because they were filtering at less than 50%, and this was the benchmark for the medical oncologist.
Because ChristineB (to her credit) goes on and on about it, I hounded him to the point of unpleasantness about drinking at least 2.5 litres of water a day, (spiked with lemon juice). His latest kidney analysis shows his kidneys filtering in the low normal range, which has surprised the nephrologist.
I suppose we really don't know, but I put this down to the water, and maybe even the lemon juice, which some reading I have done says has an alkalanizing and anti-inflammatory effect, which is beneficial for the kidneys.
Good luck, Joseph. I'll be looking out for your posts, and thinking of you. Linda

Right after I did my last post, on the following Monday, I had my radiation. In that evening I had fluid bursting out from the opening of my previous infection wound which was healed up. I had to go to emergency at Toronto General to have it looked at. Luckily it was not too busy and I was seen by the ER doc pretty quick. He paged the ENT resident on call. He determined that there was a new infection, did the draining and packing and checked me back into the hospital. The good news was that it was discovered early and should heal up quickly. I guess my diabetes doesn't help.

The doctors had to decide what to do with the radiation, so they put it on hold. I saw the radiation oncologist on Wednesday morning. He had a consult with the surgeon and they finally decided to carry on with the radiation because the risk was relatively small, namely the delayed healing of the wound. The risk of not continuing with the radiation was much higher. I actually only missed the Tuesday radiation. I was released from the hospital Friday.

Today, I had double radiation sessions 7 hours apart to make up for the missed session. So far, I've had 13 of 33 treatments. Until this point, I've had minimal side effects because I've been following the advice and heavily hydrate myself, including my diet, I put in 4-5 liters a day. But tonight, I am feeling the slight burning of the lining inside my mouth and more dryness. The skin also feels tender. I used a lot of Glaxal base and it works really well in soothing the burning.

I'm still feeding through the G-tube and I heard how important nutrition is when fighting cancer. So, in addition to the meal replacement, I prepare my own food to supplement. It mainly consists of lots of organic fish, vegetables and rice made into a porridge so I can blend and filter it and put it through the G-tube. I have been gradually reducing the cans and increasing the real food. I also switched to Glucerna (diabetic) from IsoSource 1.5 and I see a dramatic change in how well I can control my blood sugar. IsoSouce is heavy in corn syrup and is high in sugar.

I will be getting my second chemo next week. Blood test indicated my WBC dropped from 7 to 4 range, and the kidney function dropped as well. But the chemo doc thinks that they are still in the normal range. Hopefully, it will go OK. This time, knowing how badly the anti-nausea drugs constipated me the first time, I will take the stool softener along with the drugs.

Joseph

Hi Joseph!

So sorry to hear you have had these infections! Doesn't sound like much fun on top of what you are already going through. Though, these things never seem to go smoothly do they? Before my mom started her treatments she hit one road block after another, issues with her portacath, etc., so I know how frustrating it can be...

Glad you are back on track though and moving through treatments relatively ok. You sound like you are armed with all the right info to help you get through radiation and chemo. Radiation effects can start to get pretty harsh after the first two weeks so keep doing what you are doing and hopefully you will be able to keep a handle on things. There is a lot of good advice on here about how to get you through the side effects as they worsen.

Do you have a caregiver to help you through?

Hi Amy,

It was frustrating to keep getting these infections, but the wound is healing up nicely and I am continuing with the radiation and chemo.

I am staying at a lodge which is part of the hospital. This way, there is no driving, which can take up to 2 hours each way, during the week when I am getting the radiation treatments. My wife and daughter come visit fairly often and they bring home made food, which is pureed and filtered so I can feed it through my G-tube. Other than that, I don't really need a lot of help.

Yesterday, I developed a rash, not in the radiation area but in the lower back and part of my upper thigh. Has anyone experienced this? I am doing acupuncture to try to relieve it.

Joseph

So glad you're pushing trough.. The diet change will likely help your wound healing! so glad you're getting there - the fall out from rads sucks but hopefully it will do its job and be well worth it in the end!

Hi Cheryl,

As it turned out, I was allergic to the chemicals in the cleaning products they use in the bathroom. So after asking housekeeping to use our natural cleaner, the rash and hives are much improved.

My challenge now is the sore throat at night. During the day, I drink lots of fluids and that seems to work to keep the discomfort of the ulcers in the mouth and sore throat at bay. But when I sleep, I am not getting the fluids and my throat just kills, along with an extremely dry mouth. Last night I had to get up every half hour to drink water. Also during the day, I rinse with the mucositis solution which contains a numbing agent to help with the soreness. I've heard that applying some olive oil in the inside of the mouth helps. Did you have this experience?

Fortunately for the outside skin, I apply lots of Galxal base and it seems to work very well in keeping the skin from burning.

I am exactly halfway with the radiation. The chemo oncologist decided to postpone my second chemo and he will monitor my condition to decide if and when I will get it.

Joseph

Keep up the good work with applying the cream. One important thing to watch with that is to never apply cream 2 hours before you go to rads. Also always pat it onto your skin, never rub it in.

I didnt use the olive oil but have heard it works. I would use Biotene dry mouth gel to help with the dry mouth. Maybe a humidifier will help with the dry throat.

Hi Cheryl,

I talked to the radiation oncologist yesterday and she prescribed Codeine along with stool softener and laxative. I used the Codeine before bedtime and it got me through for 4 hours. When I spoke to her today at our weekly review appointment, she told me to increase it from 3.5 to 5 ml (liquid form through G-tube). I will do that and it should get me through the night pain free.

One thing I found helpful is honey. It really soothes the sore throat.

What did you do to combat the dryness in the mouth overnight?

Joseph

Dryness my deal is still a problem!!! There is notng one can do though a vaporizer may help a bit - I've heard of olive oil and there is biotene as well you can get it at walmart. I skipped the codeine through my treatment as the day they gave me my peg spthey let me give myself a dose through my tube before I went home and I threw it up immediately. So I did without pain meds pretty much through my entire treatment. Keep a lukewarm glass of water neat your bed that may help with the night dryness - if you wake up take a sip and go back to sleep. Good luck on getting though it ... Soon you'll be at the end! Glad you figured out the rash!

Someone just recently suggested using Salogen which I guess is a mouth wash of some type. You only can get by perscription and supposedly it helps with dry mouth. I gargle with Salt and warm water before bed. I also gargle with baking soda and warm water and it seems to help a bit also. Just some suggestions?

Salogen is not a mouthwash. It is a pill also known as pilocarpine. This prescription medication will help produce saliva. It also has a side effect of making people sweat. I tried the medicine for only a short time and stopped using it as it was summer and it caused me to sweat quite alot. (Everybody knows girls dont sweat )

I sweat a lot and got really bad stomach aches after a while. It didn't produce any saliva for me. I'm a water bottle 24/7 kinda guy.

Me too..l aqua... Naturale... No frizzante... Sorry I was in Italy for a bit. Every meal I downed a litre and a half of water... And carried a bottle on me. Frizzy water still burns... Ugh!