I am a 61 yr old male living in Toronto, Canada.

I received a preliminary diagnosis of squamous cell carcinoma near the back of my tongue just last week. I had a CT scan this afternoon (no results yet), biopsy next Thursday and mri in 10 days. Everything is happening very quickly and is, obviously, a bit scary - first experience with cancer of any kind.

Current symptoms of sore throat, tight swollen jaw, ear pain, swollen tingly tongue have been getting progressively worse over the past three weeks. Eating is hard (to chew or swallow) and weight is dropping.

I have been taking Advil and Tylenol and ent surgeon prescribed hydromorphone for increasing pain levels. Not much relief so far, pain gets a little worse each day. I came across this forum while searching for information and it seems like a great resource. I feel like my condition is milder than many described in here but chronic pain in your mouth area can be very difficult to live with. I am hoping for a “good” diagnosis after all the testing is complete but the waiting and the physical discomfort is taking its toll.

Does anyone have any suggestions on managing pain in the early stages?

Thank you.

Hi Barry,

I’m from Toronto too. My husband was diagnosed at Mount Sinai Hospital and treated at a princess Margaret Hospital. Which hospital are you at?

After the biopsy, you will get a treatment plan. If you’re at Princess Margaret Hospital, they have all kinds of info for patients. I cannot speak more highly about the treatment and care my husband received.

Hi thanks. I will be having the biopsy at North York General. Treatment will be at Sunnybrook. Hoping to get some direction while seeing the ent surgeon on Thursday. How long is the time between diagnosis and the commencement of treatment? When does the pain start to subside?

When my husband was diagnosed, the doctor said that the Province’s mandated “wait time” for the start of treatment was six weeks. That was in 2015. I don’t expect that to have changed drastically. It was suggested to us to go to Sunnybrook treatment since we lived in Markham. We decided on PMH because my daughter lives on Queen Street which made it a much shorter drive to the seven-week, five days a week radiation treatments.

If you have further questions after you’ve seen your ENT, please feel free to post. I got a lot of valuable suggestions while my husband was going through treatment. It was like the forum members were holding my hand throughout.

Thank you for taking the time to respond. Went in for a biopsy and scoping procedure today. The ent surgeon had also had an opportunity to see the results of the ct scan. The results from the biopsy will be in next week, but he is fairly certain from the ct scan and today’s scan that I have a tumour at the base of the tongue. I have been given appointments with two oncologists at the cancer center at Sunnybrook next Tuesday. Also prescribed a new medication (gabapentin) which the surgeon thought would provide pain relief caused by the tumour compressing nerves in my jaw, teeth and throat. Here’s hoping.

A couple of questions:

1. The appointments with the cancer centre were a pleasant surprise as I am anxious to commence treatment. On the other hand, is it a further indication to abandon hope that this is not cancer?
2. Does anyone have any experience with gabapentin in helping with pain in oral cancer? I’m also taking hydromorphone and Tylenol/Advil but that has met with limited success.
3 if you have any additional insight or comments, please send them in.

Thank you,

Barry

The biopsy will give a definitive diagnosis. I guess most ENT’s who have experience with oral cancer will be able to make an educated guess from looking at the CT. My husband had the CT as well as the biopsy. You may want to find out if the tumor is at the base of tongue (oropharyngeal) or is it in the oral tongue. If it is in the oropharynx, if it is HPV positive which has a better prognosis.

My husband was prescribed gabapentin after his radiation treatment for nerve pain. It didn’t help him much, though. He had hydromorphone when he was hospitalized for aspiration pneumonia and being “morphine naive” he ended up with hallucinations. All this is not to say it will happen to you. Different people react differently to medication. I do know that one can’t stop taking gabapentin abruptly. There needs to be a step-down process. Your doctor should have given you that. If not, ask him about it.

It’s good to know that you will be seeing two oncologists, I would guess the radiation oncologist and the medical oncologist. That’s really quick. We had to wait for two months between seeing the family ENT who had no clue and the head of ENT at Mount Sinai Hospital. It then took maybe a couple of weeks for John to get his biopsy and follow-up doctors’ appointments. After he had a proper diagnosis, it took us another six weeks to start treatment. The worst that can happen in your case now is that it is not cancer and you have wasted time going to the appointment. I’m sure you would not mind wasting that time.

If indeed you have oral cancer and will be in treatment, I would strongly suggest that you make a point of eating all your favorite foods now. Once treatment begins, it will be some time before you will be able to do that, what with mouth sores and taste changes. Don’t worry about weight gain, most people lose weight during treatment.

I am an advocate for patients advocating for themselves. When you go for your appointments, write down all your questions and make sure you ask them. If the doctors say something you don’t understand, ask them to explain. Don’t just let it go. When John saw his radiation oncologist for the first time, the doctor did a scope and said, “I can’t see the margins.” I had no idea why he was saying it. It took me two years and much reading on this forum to learn that clear margins are important. I should have asked, but I didn’t. My experience tells me that the more I know and ask, the more the doctors are willing to explain. I don’t blame them. For one, they had no idea what people know and not know, and then they see so many patients and they are repeating information all the time. If you do go into treatment, get the after hours phone number that you can call for information or help. I found that useful at the beginning when I didn’t know what to expect or on the weekend if I couldn’t get my husband to a doctor. There are nurses who man the phone and they will call you back if you leave your number.

Please ask whatever questions you may have, there’s a wealth of information among the members on this forum.

Wow, that’s really helpful, thank you. And some excellent advice, I will take it to heart. I’m supposed to get the results of the biopsy on Tuesday so expect that will be the final stage of diagnosis.

I’m having difficulty maintaining weight now, so I am worried it will get worse during treatment. With throat, tongue and jaw pain, eating is uncomfortable. I have probably lost 15 pounds in the last two weeks and have been ‘eating’ mostly smoothies and soup.i guess this is a bad sign?

The stronger you are, the easier it will be for you to get through treatment. To be stronger, you need to be consuming enough calories AND ensure you’re hydrated.

I focused a lot on intake, counting calories for John’s every meal and his fluid intake (do have a look at ChristineB’s posts on intake). If you’re on a mostly soft or liquid diet, you may want to consider eating poached eggs, adding ice cream to your smoothies, blending avocados into your soups, and, in general, increasing the protein content in your smoothies and soups. I used to add skim milk powder to the milk that I used for making the smoothies ( it’s not my invention, I saw it in one of the pamphlets given to me by the hospital), that alone adds a bunch of calories to the milk itself. I also made the smoothies/soups more tasty for John by adding coffee/chocolate/a variety of fruit to the smoothies. It changed from time to time because of his taste changes. The hospital will get you an appointment with a dietitian. Do go for the appointment. They can give you a lot of advice and you can check with them from time to time to see if you’re consuming enough calories. I worked hard on the intake so there usually wasn’t very much our dietitian would say and John used to think it was a waste of his time, but that really wasn’t true. I heard, again and again, dietitians pleading with patients to eat and drink and a doctor telling a patient, “if you won’t eat/drink, I can’t help you.” I think John only about 10 or 15 lbs by the end of treatment (he was a big guy) and the doctors were impressed. They didn’t know that I was the drill sergeant when it came to intake

Soon after the first week of radiation, John passed out in the doctor’s office when he went in for his weekly consultation. The doctor told me he was dehydrated. It was news to me. I had no idea he was dehydrated. The doctor said when he passed out, he was sweating a lot, that’s when the body would lose a lot of fluid. He taught me to check the color of his urine to determine if he was dehydrated. It’s as simple as that. They sent him to get hydrated and six hours later, he was as good as new.

I may be getting ahead of the game at this point, but all this knowledge was accumulated through trial and error. I would hate to see another patient making the errors we did.

Thanks (yet again) for your thoughtful and thorough response. Hydration hasn’t been much of a problem for me so far, drinking a lot of water and tea with smoothies, soup, etc.

As I think about it more, it is probably better for me to overcome the discomfort of eating now and build back some body weight rather than trying to do it when the discomfort is going to be that much worse.

I have been avoiding those “empty calories” like ice cream to try to focus on foods a little more dense in nutrients (nut milks, juices, seeds, fruits and vegetables). I think you (and the doctors) are saying to build up some fat reserve to live off in the coming weeks and months?

If I gave John ice cream, it was always part of a smoothie made with Ensure. It was to improve the taste and bring up the calories. You’re right about not consuming empty calories, but there was little else he could eat at that point. Some people on the forum, I have read, use protein powder in their smoothies. ChristineB has a recipe that is packed with calories, I think she used peanut butter. She also has a List of Easy to Swallow Foods. You can try searching for it on the forum. Really, whatever works and feels right for you, as long as you eat and not lose weight.

Lots of changes in the past week or so.

Symptoms keep worsening though at a gradual,pace. Swelling increasing, pain increasing, weight seems to have stabilized (down 20 pounds). Had a lot of doctors appointments!

Met with the ent who made then first preliminary diagnosis. He reviewed the results of the biopsy with me which confirmed his original diagnosis. It is an “HPV” tumour, type 16, and the doctor explained that was good news as this type of tumour is much more sensitive to radiation treatments.

Next appointment at the cancer centre - met with the surgical oncologist who let me know that they would not pursue surgery in my case (at least for now). They would start with radiation treatments on Sep 5 and there would be a series of 33 treatments - each weekday for 6 1/2 weeks. Also met with nurses to get the general “lay of the land”, and a speech therapist who gave me exercises to get started with. At a subsequent meeting with radiation oncologist they fitted me for a mask and did a ct scan. Made it all seem a little too real.

Then came the palliative care team. They reviewed the meds I was taking and suggested some slower releasing substitutes which I am starting now. They seemed quite knowledgeable and accessible. Fingers crossed that they will be able to help with the discomfort that is coming.

Medical oncologist next who discussed the chemo treatments - 1 high dose every three week that they explained was designed to improve the efficacy of the radiation treatments. They said I would require a “pik tube”? for the duration of treatment to accept the medication and then to flush with fluids. Having a pik assessment tomorrow.

Also meeting with nutritionist tomorrow to discuss diet and whether a feeding tube will be needed. I have difficulty chewing and swallowing now and have been told that it will likely be worse when the treatments start. I’m leaning toward getting tube inserted now so that it will be ready when needed.

Finally, an “incidental finding” on the ct scan was a grape sized tumour on my pituitary gland. They assume it is benign since I have no symptoms but have referred me to a neurologist for follow up.

Frankly, all of this has happened extremely quickly. It has gone from walking into an ent appointment hoping that he was going to diagnose some kind of infection that could be managed to everything described above. All since Aug 2nd. It has been an overwhelming ride and has been difficult to catch up emotionally with events as they unfold.

I’m not sure I’m ready for what’s about to happen but it will happen - cancer doesn’t seem to wait for anyone. Thank you for this forum, it has been enlightening to hear of everyone’s experience - calming in many ways.

your story sounds like my husband's. your treatment plan sounds the same except his was 35 treatments. just to give you some hope, no one would know he had a diagnosis of cancer a year ago. He coughs a lot but other than that, nothing physically present. It was awful, I'm not going to lie to you. He lost 60 lbs in 2 months because he refused to use a feeding tube and ended up hospitalized due to dehydration. He was so dehydrated, his mind was completely shot and he couldn't do the most simple task. I don't think is normal during treatment. The feeding tube was the worst part of treatment for him. it never fit well but that's probably due to extreme weight loss so quickly.

It wasn't a picnic but they told him that he has a 90% survival rate now. They changed his diagnosis from 4a to a 2 due to the HPV 16.

Take care and keep checking in.

Hi Barry,

The time after diagnosis is like being caught in a whirlwind, so much happening and you get sent to all those appointments that you hardly have time to catch a breath.

I believe they are going to give you a PICC line - percutaneous indwelling central catheter. Personally I think it’s a good idea though John didn’t get one. It makes it a lot easier when they have to give you chemo and to draw blood. So John ended up with a lot of bruises on both arms through treatment. With a PICC line you can avoid all that.

It sounds like to me that you are getting a lot of assistance at the hospital, which is a good thing. Unless things have changed, when you finish radiation, you’ll get a visiting nurse from Community Care Access who will visit you at home and check on your progress every week. John also got a visiting nurse who came in to give him hydration during treatment. They sent the pump, the saline and whatever’s needed to the house.

Do you have a caregiver who will be able to drive you to the hospital for the radiation sessions? Initially you may be able to drive yourself but fatigue eventually takes over and it’s better to have someone to drive you. For the chemo, they kept John at the hospital overnight, so it was a bit of relief. Do take the anti-emetic before you’re really nauseous when you’re getting chemo. I have always been told to make sure the patient gets ahead of the nausea. There’s no gold star for getting so sick from not wanting to take the anti-emetic.

Hi gmcraft.

You are right in a bunch of ways. It does feel like a whirlwind. Being pulled in many different directions at once. Appointments virtually every day - and treatments haven’t started yet.

You are also correct about the picc tube. Went to an appointment today where they patiently explained why it was needed. It will be inserted next week before first chemo treatment. Met the nutritionist this morning as well and scheduled the install of the g tube next Wednesday. I just thought (and after reading many experiences on here) that it would be good to have that option in place before treatments start.

I live about a 2minute drive or a 5 minute bike ride or about a 15 minute walk to the cancer treatment centre. I’m hoping I can ride my bike there but have back up plans in case I can’t make it during the later treatments.

Oh, and they extracted a wisdom tooth last week. The dentist thought it was right in the area where the strongest radiation was going to be delivered so as a preventative measure he recommended extraction. I wasn’t happy about it but had to trust the team.

I will keep an eye out for the anti nausea meds around chemo time. I’m not trying to be a hero, just survive this ordeal. Thank you again for all of your helpful suggestions.

ConnieT - Nice to hear a story from someone who has done well through treatment - buoys the spirit. They have told me that there is virtually no chance that they can spare my right salivary gland. They hope to save the left. I’m hoping for as few long term side effects as possible but a few seem inevitable.

Hi guys. A bit of a progress report and a couple of questions.

Progress:

Got my PEG tube installed yesterday morning. The procedure went well (less discomfort than I was expecting). After that I met with the neurosurgeon to discuss the pituitary adenoma in my head. He felt that it had all the signs of being benign and recommended no current action other than a series of mri’s to create a baseline to observe if the mass is growing. If symptoms arise he might suggest something else but, absent symptoms he is not too worried. Took one problem off the “agenda”.

Met with nutritionist to learn how to use the peg tube this morningfor feeding and how to keep it clean. It was quite simple and hopefully a tool to maintain strength and weight heading into treatment.

Had first (ever) radiation treatment today for the tumour in my tongue / mouth. I was quite apprehensive about the treatments - I guess due to fear of the unknown and perhaps more concern than was necessary. The radiation technicians were extremely patient and empathetic. They walked me through the entire process before hand and gave me a lot of reassurance. The treatment went off without a hitch. No side effects yet, but I am advised that they are coming and will be unpleasant.

PICC tube is getting installed tomorrow morning, then off to First Chemotherapy treatment after that. They are going with a high dose of cisplatin and it will take most of the day to administer it. They follow up with home visits to flush the chemo drugs in the subsequent days.

Questions

1. How long until you felt comfortable exercising with your peg and picc? The people inserting the picc said “no heavy lifting or golf for 2 weeks after picc is installed”. Peg guys said “I wouldn’t rush out and do 50 sit-ups but going for a brisk walk is no problem”. Lots of leeway in those two statements. I’m a bit concerned that the two week lay off due to the picc will blend into the time that side effects start to rear their ugly head (s).

2. What is your experience with the side effects of the first chemo treatment? My daughter’s 30th birthday is on Saturday (day after first chemo treatment). Am I going to be a basket case or is there reasonable hope that I can attend?

Thanks everyone for listening and providing advice.

Hi Barry,

I’m glad to hear that things are smooth and the technicians are kind and patient — that has always been my experience with the staff at Princess Margaret.

I’m afraid I can’t answer your question about exercise but I can tell you that you might be feeling rather crappy on your daughter’s birthday. (Happy birthday to her!). The day of infusion you will feel fine but it is the following two days when you may expect to find the effects of the chemo. You would feel nauseous (make sure you take your anti-emetics and stay ahead of the curve) and John also used to get shakes. Then you would gradually feel better.

Cisplatin may affect your hearing. If you get ringing in the ears, let your MO know ASAP, they can switch you to another chemo.

It’s good news about the pituitary adenoma. It’s also a relief to know that you now have a neurologist who is aware of your case.

The treatment is tough but it is doable. Take it a day at a time. My very best to you.

When a patient has a peg tube and/or a picc line they must be very careful with everything they do. Definitely no lifting anything over 20 pounds!!! I cant imagine doing sit ups with a feeding tube either. I suggest talking with your doctor about exercising. Most patients are not physically able to exercise while going thru rads. They're burning up calories at a much faster rate withe their body fighting the cancer and trying to rebuild itself. Patients going thru rads should not lose any weight, no matter if they are 100 pounds soaking wet or 500 pounds. Losing weight is a sure sign the patient is not taking in enough calories every single day and must increase their intake to maintain their weight. Im sure walking wouldnt be too strenuous but check with your doc to be certain.

Cisplatin is known to affect some patients with hearing loss and/or kidney damage. A smaller weekly dose was shown to be just as effective as the 3 "big bag" method it sounds like you are getting. Thats what I had too and I struggled from about 7-10 days after the chemo right thru until about 2 months post rads. But!!!!.... always remember everyone is different and will react to treatments, medications, etc in their own unique way. What feels like torture to one person may seem like a slight pinch to another. As Gloria already mentioned pay close attention to any changes in your hearing with reporting all changes immediately to your doctor. The damage to hearing is permanent and you do NOT want to be given another dose if your hearing is being affected.

Chemo days can be long days!!! It was only 4-5 hours when I was given chemo, then next was rads which was surprisingly very quick. It took me longer to change into the hospital gowns and back into my regular clothes than to do the rads treatment. Chemo days you will see most patients have someone with them to keep them company. Others read, sleep, play cards, watch tv or movies, some bring an ipad or laptop while others use their cell, some socialize with other patients while getting their chemo. I had a picc line too. Theres a numbing spray (sorry but I forget its name) nurses use for children when they take blood or sometimes when giving shots. Most medical professionals wont automatically offer the numbing spray, at least they didnt offer it to me. But if you ask they will use it before accessing the port. That spray really makes a big difference!!! If you can remember to ask for it, they should have it right there available for their young patients.

You should be ok to attend your daughters party. But use caution avoid anyone who is sick, even just having a common cold can be really hard on someone going thru rads and chemo. Be aware as you continue thru your treatments, you will become less able to fight things off as your resistance drops along with your white blood counts. Chemo does a number on a patients immune system!!! Anyone going thru rads/chemo needs to pay special attention to surroundings, avoid crowds, schools, younger children, public places or anywhere you could easily pick up different illnesses from other people, even the waiting room of your doctors. You should carry and use hand sanitizer and wash your hands more often, especially after being around someone who is sick or touching everyday commonly used things like elevator buttons, doorknobs, etc. It can take months before a patients immune system bounces back after going thru rads and chemo. For some (like me) it takes them even longer, a few years to have normal white counts and build themselves back up. Almost everyone given the "big bag" method of the 3 big doses of cisplatin feels fine the day of and the day after its given. With the extra hydration thats usually given along with chemo, most will actually feel a little better than they had before the chemo. Its very important you drink extra fluids to help flush that poison out of your body. Even with being given extra hydration you still should take in 48-64 oz of water daily... on chemo days (and if possible the day before and the day after) patients should push to take in at least 64 oz of water, more if possible. Its extremely rare for anyone to mention noticing any side effects from cisplatin earlier than 6 or 7 days after the chemo is given. Your doc can give you a calendar showing the dates of chemo treatments as well as when to expect to see side effects. At least thats what my doc did for me, it could be something my treatment facility did or maybe just something in the US? If you havent already been given anti-nausea meds like zofran, ask and fill the prescription asap so you are prepared in case you begin feeling nauseous. For the patients who are very nauseous, its necessary to take the anti-nausea meds around the clock as its next to impossible to get ahead of the nausea once it really hits the patient. Just in case if you would be one of the unfortunate patients who gets hit hard with nausea, there are anti-nausea meds in suppository form to get you back on track taking the meds around the clock. Hopefully you wont be too bothered with side effects, my fingers are crossed for you.

Best wishes with everything!!!

Thank you Christine and Gloria. Your advice is greatly appreciated and everything you say makes total sense.

I hadn’t thought much about the compromised nature of immune systems but it seems obvious. I will take more care to avoid kids and germs and crowds. My objective in exercising wasn’t oriented to losing weight, it was more about being outside and participating in activities as a form of distraction from the unpleasant nature that is the main focus of my life. Again you make sense in realizing that I’m not going to feel much like exercising for much longer.

I’m hoping that the peg tube is going to allow me to maintain my weight where it is. I haven’t been particularly hungry for the past 6 weeks and have lost 15 pounds. Now I can just adjust “food” that is going into the peg tube to maintain weight or increase it a bit. Or is that being too simplistic about how this is going to play out?

Thanks again everyone for your advice. Your selfless attitude toward other oral cancer patients is really appreciated.

Barry

Hi Barry,

ChristineB’s point about compromised immunity reminded of one important thing — which is, get your flu shot. Of course, it’s early and it isn’t available yet, but all the doctors John saw from the MO, the ENT who diagnosed him and his family doctor advised that he get the flu shot. If you’re still in treatment then, you probably can just get it at Sunnybrook, or you can go to your family doctor.

The PEG will help you gain/not lose anymore weight. The Ensure/Boost you get is counted as liquid, but I always gave John an extra syringe of water after a feeding to flush out the feeding tube and to add extra water. Do remember to do your swallowing exercises several times daily, even dry swallows will do.

Ok. Update and a question for you.

Update.

Had my 10th of 33 radiation treatments today. Side effects are making themselves known. Most pronounced effects are, dry mouth, mucous, a little redness around the skin, a few more sores in my mouth, and swelling of my mouth - tongue and cheeks primarily (more on this later).

Other than that I have been feeling relatively well. I have been taking all nutritionist orally. I flush my peg every day with water to make sure it is flowing properly and to provide a little extra hydration. Most calories are coming from soups, smoothies, I protein, and a little bit of solid food. Weight has more or less stabilized and I am able to battle weight loss with increasing iprotein consumption.

Still getting around well. Rode my bike to radiation appointment today - doc said this was a good sign. It wasn’t a long ride and it was a beautiful day here in Toronto.

Next week is the second chemo instalment. 1st series went really well, thanks to some well timed anti-nausea medications. Had a home nurse for post chemo saline flush. A bit of a hassle, but I put up with it.

Questions:

1. I think that if I could chew solid food I could easily swallow it. My problem is that the rads have increased the swelling and soreness in my mouth. When I try to chew solids, I end up biting my tongue or cheek - kind of painful. Anyone have any suggestions to avoid biting tongue? It is pushing me to a full soft diet and I would prefer to eat solids if I could.


I can’t tell you how helpful all of the information and advice from the forum has been. Thank you all for your efforts.

Hi Barry!

Sounds like you are doing great! Glad to hear you are still trying to eat as best you can. The further along you go with rads the more challenging it may become. Getting yourself into a routine with pushing daily intake now will help to get thru everything easier and hopefully continue on as habit if/when eating does become a struggle.

Generally broth based soups do not have many calories but they do help your daily fluid intake numbers. Cream soups may be easier to eat than broth based soups, especially for those with mouth sores. During rads and the first few weeks/months of recovery its all about getting the most calories per swallow or sip. The more the better as will be the case for at least your next 3 or so months.

Other helpful eating tips include...

Use a food processor to help chop up things you are trying to eat
use a fork and knife to cut pieces instead of biting into something
brush and floss after every meal
rinse and spit 4+ a day with the mixture of 1 cup warm water, 1 tsp baking soda and 1 tsp salt (gently swish it around your mouth for a minute, then spit it out) (salt can burn radiation caused mouth sores and a general mouth sensitivity, if necessary cut the salt back to 1/2 or 1/4 tsp salt ... if after cutting back on the salt you still cant bear the salt induced burning, omit it completely ... it really is very beneficial to have the salt in there so try your best to keep some in your concoction)
As recently discussed in another thread use prescription Magic Mouthwash (MM) which has several variations, the one I used was maalox, benedryl and lidocaine. That will numb your mouth for 15-60 minutes after swishing it around in your mouth and spitting it out which should allow you ample time to eat.
****EAT SLOWLY!!!! Take your time, budget your time so you allow yourself at least double the amount of time it takes you to eat so you arent in a hurry. Frequently OC patients begin to feel the effects of rads will find eating is progressively more difficult and time consuming, the effort of eating wears a person out
When eating, do not talk or be involved in conversations, stay focused, pay close attention to what you are doing, cut or mash up (a food processor, blender or mixer helps to minimize chewing and makes eating easier) whatever you are attempting to eat to help reduce how much you need to chew something which should in turn reduce the tongue biting
add butter, sour cream (many dairy items help cut the acidity of foods), gravy to make food easier to swallow
seek out a nutritionist at your treatment facility
avoid buying large quantities of items as the sense of taste can come and go, eventually food loses its flavor and things may taste overly salty, burnt, like cardboard
eat smaller portions more often
keep eating as much as possible
write everything down... every single day keep an accurate count of what/when/how much you take in per meal or snack and have a seperate running total of calories and water intake, even count the flushes of water

Along with your intake documentation, write down an ongoing daily log of any and all medications taken including when/strength of medication/name of the medication/dosage.

Even patients who have the best memory can have a hard time remembering every detail of their day to see if they have taken in enough. This can be very important when referring to medications. Some patients in your situation, will feel as if they're in a fog and begin to forget things they'll lose track of time... AKA chemo brain! Always better to write it down when it happens so you know you have it to fall back on down the road. Pluys if your doc asks you specifics about your at home routines you have the ongoing daily logs.

Recently there have been discussions of Magic Mouthwash (MM) which is a concoction of lidocaine, maalox, benedryl (thats what the MM I had was made of ). If you dont already have this, ask your doc for a prescription. The MM will temporarily numb your mouth anywhere from about 15 minutes to an hour. Directions --- shake the bottle, swish a large teaspoon of MM around in your mouth for a minute then spit it out. Do NOT swallow it!!! Even if the directions say to swish and swallow, dont do it or you could have bigger problems by choking and not even realizing it.

The following list I started 10.5 years ago. WOW!!! Time sure flies!!! These foods have a smoother texture, are less spicy and most patients have found them to be a helpful tool during rads and recovery.


List of Easy to Eat Foods

Christine. Thank you for your informative post, lots of great ideas that I will take advantage of. I had my weekly meeting with radiation oncologist and told him about chewing problems. His response was that they had lots of “tools” to address pain but none to address “swelling”. Similar advice to yours -slow, focussed chewing. I have a feeling that as the side effects of radiation continue to close in that I am nearing the end of my chewing days.

I like your suggestions on recording food and meds. My intake from here on in is likely to be a combination of soup, smoothies, blended foods and supplements (ensure). I’m hoping I can swallow it for as long as possible but have the tube ready to take over when needed (at your suggestion I might add).

I have a prescription for “magic mouthwash” that I picked up a few days ago. I tried it once to get a better sense of how it was going to help. Haven’t needed it yet, but I will heed your warning on not swallowing (my prescription says to swallow). I met the hospital nutritionist last week. She is on board with my plan and arranged for insurance to cover the cost of iprotein and the 6 servings a day I will need when it comes to that.

Other than that, I plan on taking advantage of the nice weather forecast for this weekend in Toronto, and get outside for some golf before the side effects turn me into a basket case.

Thanks again to everyone for all the advice, I’m sure it is helping me get through this difficult time.

Barry

Hey Christine. Progress report. 15 radiation treatments completed and your predictions are coming true (are you from the future?).

I find swelling is down so chewing foods is a little easier without chomping on my tongue. Swallowing on the other hand is much more painful. Seems like my mouth Is producing little to no saliva (radiation oncologist says this will be permanent on right side of mouth, hopefully temporary on left) and a very sore throat making swallowing food difficult.

To maintain weight, I have been supplementing with isource (like ensure) and they still are easy to swallow. Up to 6 a day for 2250 calories + whatever I can eat. Have so far avoided the peg tube for anything but water to keep it clear. I suspect I am a week or two from taking everything through peg but hope I can keep eating orally.

Sunburn starting around neck (treating with moisturizer) and more sores in mouth everyday.

The psychological “weight” of the challenging treatment and the unknown probabilities of success in eradicating tumour is getting me down. Anyone have tips on staying positive?

Thanks all.

Hi Barry,

If you can still swallow a bit without using the PEG, you’re doing quite well. John could not even swallow a sip of coffee in the middle of his third week of radiation. You’re probably feeling that all your time and energy is totally focused on getting through treatment at this point. It is exhausting, both emotionally and physically. If it gets you down, you might want to speak to your team or to you family doctor about getting a prescription for anxiety. If taken before bedtime, it will allow you to sleep at night.
The dry mouth will persist for a long while. John used to carry a bottle of water with him which he drank from and rinsed his mouth with so that it wasn’t so dry. He also had a spit cup in his pocket whenever we were out. He did try the Xylitol tablets but he found them too powdery and it made him cough. Having said that, you might want to see if you have the same reaction to it or not. If not, it would be helpful.
Hang in there, you’re halfway through already.

Thanks gmcraft for the advice, much appreciated. It’s good to find a reference point for how you are doing. Still .... I love food. I love to cook, make food with friends, match up wine with food, and that’s all gone. A lot of socializing is done .... over food. It’s hard to reconcile an extended period where anything I’m able to consume tastes pretty bad. It’s all discouraging.

Anyway, just about to head out for my second large dose of Cisplatin and then my 16th (of 33) radiation treatment. I’m still riding my bike to treatment so I feel pretty good about that.

Thank you all for the support and advice.

Barry Toronto,

Your taste should start coming back several weeks to even months after treatment. Once you do, it’s a little at a time, and you may appreciate the flavors of food more than ever before! I watched food channels, read magazines and salivated from the food they were eating! Saliva helps taste! Slowly I started experimenting with the food I was seeing. Starting with soft foods like farina or eggs that didn’t scratch my throat. Slowly I added more and more! I can eat just about anything now, but the only thing holding me back is having no teeth at the time being, but even still I manage to eat pizza!

Good luck with everything!

That’s encouraging Paul, thanks. I can’t wait to chew and taste foods again. Will try not to take those pleasures for granted again. In addition to the tasting of food, the social isolation is also kind of depressing. Most of my social interaction with friends came from food and sports (golf and tennis). None of those three are working very well at the moment.

Barry, we, too, saw our friends mostly for meals and parties, when John could no longer swallow, socializing with them became a bit of a problem. Then I read somewhere, maybe on this forum, that a way to deal with this was to move the focus for socializing away from food to other things. Instead of meeting for a meal, for example, we could meet and watch a movie on tv together, for example. People may still want to have popcorn while watching the movie, but John didn’t have to partake. I tried that with some success. I was very open about shifting the focus. I didn’t hint, I just said we had to try do something else if they wanted John to be a part of it. The treatment period can be lonely, it won’t do for the patient not to see his friends at all, do give this some thought.

Hi Barry;

I introduced myself here back in the summer. I have floor-of-mouth cancer that involved my mandible (lower jaw bone) and am also in Toronto. I live downtown, but all of my treatment is at Sunnybrook. I follow all of the doctor reports on "mychart" - think you can do that (if interested) on "myuhn".

In my case, I had a great surgeon at Sunnybrook who operated Aug 29. I was in the hospital until Sept 10. I was able to eat "normally" (in quotes because of some restrictions) before the surgery. They removed my teeth, a lot of the floor of my mouth and approx 3" of my right jaw which they replaced with 3 inches of my left leg. I can walk gingerly without any supports (only do this inside) and am up to eating more liquidy stews. I very finely chop everything (think 1/8 inch) which I don't have to chew and can swallow. I, too am drinking ensure, but also yogurt, mott's fruit sensations, oatmeal, etc. I've found that some pastas are possible, and rice/noodle side dishes like the Uncle Bens or, Knorr). I increase the liquid (water/milk/butter/margarine) to make them easier.

You might want to try some of the above. To end, I start my radiation in a week or two, they might also add chemo. Not sure, so my coping mechanisms above might all fall by the wayside.

Wish you the best in your fight and a swift recovery.

Drew.

Hey Drew, great to hear from a “local”. You sound like you are making great progress, congrats. I feel fortunate reading your story that I didn’t require surgery - it is a bit of a mystery to me the type of tumours that demand surgery and those that do not. Is your tumour HPV based? I read that HPV 16+ tumours (mine) are very sensitive to radiation - maybe that is the difference? Anyway, I have heard that the surgical team at Sunnybrook is top notch - my ent told me that if his family required surgery he would send them to Sunnybrook.

I just completed my 22nd radiation treatment on Friday - 11 to go. I have had 2 largedose cisplatin treatments with one left. My side effects so far have been (mercifully) mild. “Sunburn “ around neck, very sore throat, dry mouth, difficulty swallowing. I find the act of eating solid food to be a bit off putting. Food doesn’t taste very pleasant in my mouth and when I swallow solids, I feel a mild nausea. Combine that with zero appetite and it’s hard to get motivated to eat much. I have taken to isosource through the peg to maintain weight which is a struggle (lost 20 pounds since starting). I am swallowing as much solid food as I can to keep the muscles in my throat working.

Apart from the effects on my mouth, I am still getting around in a fairly normal fashion. I played golf this week and have been riding my bike to treatment most days. My goal is to ride to my 33rd treatment - rain or shine!

Good luck with your recovery, hope that it is swift.

Hey gmcraft. I have hatched a plan to deal with socializing with friends over food. See if you (or anyone) thinks it is bonkers.

I have invited two (close and understanding) couples for dinner this week. My plan is for me to do all of the cooking and serving while they socialize around the kitchen - kind of a “chefs table” setup . This way, I can cook, see my friends over dinner but hopefully diffuse the awkwardness of not being able to eat or drink. Just thinking of a bunch of small tapas type plates over the evening. I’m looking forward to it since I haven’t been able to cook or socialize much recently and this kills two birds.

how nice to be treated that way!!!

I used to fast a lot for health reasons (I tend to be a health nut) and I would not eat when I went to dinner with friends...after awhile, no one ever thought a thing about it, they just ate and we all talked like normal. Just a thought that most people get caught up in their own plate and socializing in the long run.

Best wishes.... you will prevail!

Barry, what a wonderful idea! Your friends are so lucky. It’s not at all bonkers and it speaks to the kindness you show others.

If you have been golfing and are still riding the bike, you are doing very well.. I will pray for the cold weather to stay away until you have fin9shed your last radiation treatment so you can reach your goal.

Hi Barry;

Nope, my tumor is/was not HPV based - squamous cell carncinoma - floor of mouth cancer that had spread to the mandible. My dentist sent me to Sunnybrook as if there was no other place I should/could be sent. In the early days I did a little research for ENT cancer treatment in Toronto, and you really only come back with Mt. Sinai and Sunnybrook. Now, that said, you can get radiation/chemo at a lot more hospitals and, I know my Surgeon is a professor at UofT and has credentials with UHN hospitals - he does surgeries elsewhere. So, from the outside looking in, who knows how this is all fit together.

I'm glad I had the surgery as all the 'visible' cancer is gone and the margin biopsies all showed me clear. Finally, biopsies of various cancer pieces showed none to be metastatic. Now, I was discharged from Sunnybrook on Sept. 10 and am just feeling better now. Having the radiation/chemo still in front of me is a little demoralizing as I know I feel better, but, alas, it's not to last. This is a journey that I'm getting used to - albeit slowly.

I lost 10 pounds through the surgery and am not sure what I will -or may- lost due to the radiation/chemo. I don't have a peg tube or a g-tube. the doctors gave me a tube down mouth - throat while I was in hospital. Really was useful while I had the trach. After the trach was gone I coughed it up. I have a secondary condition (unrelated) that messes up my blood vessels and I can get some nasty nose bleeds, so no tubes down my nose either. They might have to give me that tube if I start to lose too much; for now am eating - am aware also that this treatment affects everyone differently.

I wish I could bike to Sunnybrook. Alas I'm downtown (Bloor/Ossington area) and am not biking to Bayview/Lawrence. And, with 3" of bone missing in my left leg I won't be golfing this year !! - but I do have a jawbone...

Wishing you the best in your recovery,

Cheers,

Drew.

Brief update after finishing my last radiation treatment today and final chemo (large dose cisplatin) Friday.

I decided against riding my bike to last treatment today due to inclement weather in Toronto- raining and cool, so typical of November. I was able to ride yesterday which I consider a victory of sorts.

Frankly, I feel like the treatments have beaten me up a bit. A little more tired and lethargic and the treatments have left me on a mostly peg diet. Losing weight probably hasn’t helped me maintain energy.

Doctors have advised that side effects will continue to worsen for a few weeks, and then hope for some healing.

I now find myself in the stage where treatments are complete but there won’t be any feedback on whether the treatments have been successful in eliminating cancer for some time yet. Ten weeks until imaging can begin due to effects of radiation.

I also feel that I should push myself to reintroduce solid foods but hard to get motivated absent appetite.

A continued thank you to everyone on this forum for the advice and encouragement. Hope I can return the favour to anyone who unfortunately follows down this path.

I'm so glad you've fininshed treatments. I'm behind you by a couple of weeks and I think I'm on the same path with regards to lethargy and feeling beaten up.

This is the time to allow your recovery, so don't push yourself too much. I was told it'll be around the 2nd week post treatment when you'll start to feel an improvement in yourself.

With introduction of solid food, maybe start with smoothies and gradually thicken them up before moving to solids. It's certainly not a race but good to keep ypur swallow strong.

Your cycling and zest to keep going is grand and an inspiration, one that keeps me motivated.

Thank you so much for the updated. Big hugs to you.

wow! you were riding your bike to treatments? I'm impressed. my husband couldn't hardly figure out how to get out of the car I drove him in, barely able to walk, unable to focus on anything even simple. I suppose if he had kept up his nutrition, he might have done a little better.

The next few weeks won't be a piece of cake but you can see the light at the end of the tunnel now!

Barry, well done! Not riding your bike on the last day of treatment because of inclement weather? You’re amazing. My husband was in a wheelchair at that point.

I agree with Dizzy that now is the time for you to rest a bit. If you want to keep up your swallowing but has no appetite, do the dry swallows. There’s no point in doing imaging for now. The radiated tissues are so swollen that the doctors can’t see anything. Don’t forget your flu shot now that it’s available. I am going to get mine tomorrow.

Congrats on your last treatment, Barry! Now’s the time to rest and let your body begin to heal. My husband’s fatigue is slowly lifting a bit, pain meds reduced and he’s putting some weight back on. We learned through this supportive group that this all takes time and to not fret about how long it takes, for it will turn around when it’s the right time.

Sending good vibes your way!
Nedra

Hi Barry,
Been following your treatment posts and happy for you that your done. You and Ms. Dizz_ey are such fighters. There was a job to be done and you both pushed through it like champs. You both are inspiring and encouraging for our members. Great work! Congrats to you Barry. High five!

Thank you Dizzy. Just when things are getting challenging, you can count on the voices from this forum for encouragement.

Even though doctors warned me that side effects would get worse after treatments ended, a little voice deep down didn’t believe it. Stupid. The last week - really the time after the last cisplatin treatment, have been the worst. Really sore throat, nausea (very little with the first two treatments), fatigue and weight loss. I am taking everyone’s advice and resting as much as possible and just enduring this (miserable) phase.

I think I have been very lucky with respect to side effects so far so maybe this is just a little “evening up” of things. I’m going to try the smoothie idea a little more, and thanks again.

Thanks Mokie. For some reason it is encouraging that there is a support group out there in cyberspace cheering each other on to recover from this horrible disease.

Hey Gloria. Thanks for that. Funny, I was looking into the flu shot just yesterday. I thought that with the medication I am on that I should run it by my doctors to make sure the flu shot wouldn’t interfere with anything else I’m taking. Radiation oncologist said no problem, still waiting to hear from medical oncologist and endocrinologist to make sure - then I’m off to get one. I have also tried to avoid large gatherings, etc. To reduce exposure to potential germs. Kind of a drag, but not really feeling up to a lot of socializing at the moment anyway.

Thanks Nedra. Good advice to be patient waiting for relief.

You're welcome anytime. It is nice to know there is someone encouraging you and cheering for you.

My 2nd dose of cisplatin was awful. I had 2 nights of full body sweats, 1 night where I was sick and spent the whole night wanting the world to end as everything hurt. I'm not having the 3rd dose. I can't go through that again.

I also had read about things getting worse after treatment, but didn't count on things to ramp up when I'm so close to the end. The back of my throat is so sore that that it's also sensitive. When I get too much saliva and don't swallow in time, it burns and makes me cough. It's even worse when I'm trying to sleep.

I reckon I start feeling better in December

Barry, radiation is no walk in the park, that’s for sure. I’m glad you are now out on the other side and should start to feel better in a couple of weeks. You should be okay with the flu shot. John’s MO, ENT and family doctor all reminded him to go get his flu shot because if he caught it, he would be “thrown for a loop” as one of them said. Staying away from crowds is a very good idea. Your immunity has been compromised and you have to give it time to recover.

Hi everyone. I am two weeks post radiation and chemo treatments tomorrow. Still hanging in there - a little fatigued at times and still having a tough time reintroducing solid foods.

Since I’m still losing a bit of weight, yesterday I was resolved to start eating solid foods despite a sore mouth and throat and, really, no appetite to speak of. I started with a scrambled egg and a half slice of toast. Mistake. Shortly after consuming a couple of bites, I was (sort of violently) ill.

Have others had the same difficulty reintroducing solid foods? It was a bit rattling.

Two weeks post radiation and introducing solid foods...you're a rockstar. I was on shakes forever!!
Be patient with yourself. I lost weight for several months post rads but now have gained it all back a year later.

Linda

Hi Linda—did you find any issues with dairy based shakes? My husband is finding dairy products have a metallic taste.

Hi Barry,

Recovery from radiation includes allowing the inside of your throat, which you can’t see, to heal and scar over too. I was actually taken aback when the RO did a scope post treatment and told my husband that he saw a lot of scarring. That may explain why swallowing and re-introducing solid food is difficult for you at this moment. The inside is probably still raw.

Toast is probably too hard for you to swallow right now. If you really want to try solids, make sure the food is covered in a lot of sauce so that it goes down more easily.

There were a couple of times when John swallowed some food and it seemed like he was doing okay, but then after a couple of hours, the food came back up because it never did go down into the esophagus. I don’t know if that was the case with you. But I know how frustrating and upsetting that can be. Do you have a dietitian assigned to you at the hospital? Is it possible for you to pick his/her brains?

Hi Barry;

Congrats for having made the journey to the other side. I really can't comment on the food (yet). I'm 8 weeks post-surgery and 2 weeks into the radiation. Had my first Cisplatin about a week ago. My side effects seem to be about the same as yours (first dose), but I am having trouble with my ears and, from what I've read, platinum based drugs can cause permanent damage. Will find out as I go. I also have a genetic blood vessel disorder and, with the home care nurse giving me 1000ml fluid a day, am getting almost constant nosebleeds. I may have to change the amount of fluids as my blood pressure is sensitive.

On to food, before I worked in business, I was a licensed chef for a long time. I've searched places (like Amazon) and there really are no books that deal directly with oral cancer. There's a lot of stuff on pureed foods and things like "superfoods to beat/prevent cancer", but I can't seem to find anything that deals with the intracacies of oral cancer. We'll probably all have throat issues due to radiation, some from throat surgery. Then there's mouth surgery, tongue, lips, and any combination, where eating and diet are going to be a challenge. This doesn't even begin to mention side effects, allergies (preferences eg: vegan, vegetarian, etc).

I think a book like that with "adaptive recipes" might well be called for. I may even work on something (give me something to twiddle my fingers with). Perhaps a book could even support OCF.

As for my situation, they removed my teeth to get at the cancer, 3 1/2 inches of jaw, about an inch of tongue and whatever else they saw.

I'm finding thick soups, high is both protein and carbs (lentils, meats, potatoes, other veggies) and creamed soups the easiest right now. Smoothies, ensure, and pureed everything doesn't make for an outstanding "menu". They won't replace my teeth until February (after I heal from radiation and chemo). I'd personally love to see something out there with ideas for the next few months.

I can understand feeling sick from a scrambled egg. I scambled 3 with about a tbsp of butter and felt gross for hours. A thick soup cured that.

I'm actually not looking forward to the end of treatment. I'll be worrying or wanting that MRI or PET scan as soon as I can get it. That said I've faith in everything and am going to try and plan a cruise for the spring.

Barry, I think you've done amazingly well - a metaphorical toast to you. Please keep in touch.

Drew.

Hi All,

I bought these cookbooks when my dad was diagnosed. I've linked them in order of my preference. Figured I'd share in case there's something in there you might like.

https://www.amazon.com/gp/product/0757002900/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
https://www.amazon.com/gp/product/0985423102/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
https://www.amazon.com/gp/product/1604430052/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

Some of the recipes were not easily chewed, despite the book's titles.

Here is a site that has web links to books and websites in regards to difficulty eating and swallowing. There are a few written by those in the head and neck cancer field.

https://kelliesfoodtoglow.com/nutri...ew-and-easy-to-swallow-recipe-ideas/?amp

Good luck

Hey gmcraft. Thank you for the advice. I contacted the nutritionist at the hospital. She thought it might have been a little early in the healing process to reintroduce solid food (like a few on here have also suggested), and that the toast might have been my downfall. She encouraged me to continue to experiment with small servings of soft foods to find the ones that are the least irritating to my unsealed digestive system.

Hi everyone. Brief update 9 weeks after treatments finished:

Eating solids is still a difficult grind. I am pushing myself to eat everything but I find it to be a mental obstacle to devote myself to it 24/7. Still very little appetite, taste buds coming around but still a work in progress, and some level of discomfort with each swallow. Nonetheless I am convinced that I have to continue to make progress in this area.

Energy comes back in fits and starts for me. I generally feel more alert and energetic in the morning and can do more and eat more. Some days it is hard to stay awake much past early evening, other days are much better. It’s hard to link my varying energy levels with anything - they just seem random.

A couple of weeks ago, I started to feel a bit of a tingling sensation on the right side of my tongue about half the distance between the tip and base. At first, I didn’t think much about it, but felt a bit of pain when doing exercises my speech pathologist suggested for stretching out my jaw. The pain has gotten progressively worse over the past couple of weeks and I called my radiation oncologist about it this week. I’m a bit paranoid that there is some residual tumour activity in my tongue. I was already scheduled for a follow up mri’s and ct scan this week so the oncologist suggested sticking with those appointments and she will review the results Jan 12. I realize that there can be lots of more benign explanations for these new pains than a return of cancer but 9 weeks out of treatment it is hard to think about it rationally objectively.

Anyone with suggestions on riding this emotional roller coaster, please chime in. Will let you know outcome of scans after review on Jan 12.

Update of last three weeks:

Met with MO and RO on the 12th of Jan. They had the results of the MRI and the pictures of the CT scan but radiologist had not yet reviewed (apparently there is a shortage of radiologists up our way). The MRI showed that the main tumour had shrunk drastically but was still visible. RO thought this was about what she expected given the tumour was quite large when treatments began. She thought that the swelling and pain I was experiencing could be a radiation side effect - scarred tissue causing fluid to be trapped, causing swelling and pain. She set up a PET Scan for next week to make sure there was no further active disease areas. Fingers crossed.

Meanwhile, swelling and pain have been progressing, so upped the dose of hydromorphone and pregabalin and adding some type of steroidal drug to help with inflammation.

Eating has been ok. Mostly liquid - soups, smoothies, etc., but if the pain in my mouth were to get resolved, I think I could begin a more solid food diet. Weight has stabilized, but hasn’t started to increase yet (New Years resolution is to gain 10 lbs).

Bottom line - progress but still anxious times awaiting PET. Thanks to everyone for listening, it is great to have a place to vent!

It appears that you are getting very good care. I like how your RO is cautious and has ordered a PET.

Hopefully you’ll feel better soon.

Thanks Gloria. My RO is “cautious” or responding to my anxiety about the new pains I’m experiencing. I’m getting the feeling that the survivors of this disease live the rest of their lives with anxiety over a cough or any form of oral pain? Do you ever get over that?

Second question for caregivers. What can patients do to reduce the “burden” on caregivers?

This may sound odd, but I have noticed that in many ways, my cancer diagnosis has been more difficult on my wife (and caregiver) than it has been on me. It is not as much the physical burden (I have done reasonably well in that front) it is more the emotional burden - coping with the effects of cancer on our relationship; the unknown prospects for the future; feeling helpless at times in managing the disease, difficulty sleeping - I could go on, but I suspect many of you caregivers can relate.

Any suggestions on how to reduce these burdens on my spouse / caregiver? I’m starting to get a little worried about her.

You’re right that it’s hard on the caregiver as well. I went back to see my therapist after I was told that John’s immunotherapy trial did not work. I recognized that I needed someone to talk to and friends were not the best people to reach out to. They just could not understand the complexity of oral cancer and its treatments. John had a therapist that he saw too on a regular basis.

All through John’s treatment, it was important for me to get up early enough so I could have breakfast quietly on my own. That was the one time I really valued. I guess it’s a way of saying that I needed some “me time” during the day. I am a knitter so I ended up doing a lot of knitting both in the waiting room or when I went with John to his treatments. Knitting is also calming because I could focus on something else. I read too, but it was difficult to read because my mine would be so busy that I literally lost the plot. I knew from the very first that being diagnosed Stage 4, John’s chances were not good. I did not focus on the “what if’s”, instead I focused on the next step, like I would not worry about an upcoming scan until we were sitting in the doctor’s office waiting for the results. I kept meticulous notes on medication, intake and I could talk to the doctors and nurses knowledgeably about whatever they needed to know. It’s my way of contributing to his care — I did not just do what we were told to do, I actively managed the case. (One time, I had a hospital pharmacist asking me if I was a pharmacist as I was talking to her about serotonin syndrome and she couldn’t understand how I knew all that.) I actively advocated for John. If he was in Emergency, I would be making sure he was getting the help he needed in a timely manner. When he was in hospital, for example, I made sure his sheets were changed and if not, I would go talk to the nurse in charge.

Then, of course, I was on this forum everyday picking up pointers and cheering people on. I’m sure you’ve felt the camaraderie here. I learned a lot from here that I could use in caring for John and I got a lot of comfort too.

Going back to your first question, yes, the anxiety can be overwhelming. I honestly felt I suffered from PTSD and it took me two years after John’s passing to feel like my old self again. During John’s treatment, knowing where and how I could get help was the crutch I leaned on. John had a fantastic family doctor and he would ask to see John every month to check on him and if John was ever unwell, we knew we could get in to see him the same day. (John once had the hiccups for hours on end and the doctor gave us an appointment at the end of his day so he could get relief.). John had a nurse from CCAC visiting weekly and she’s a gem. The pharmacists at my Shoppers talked to me as a friend, explained stuff to me and even offered to deliver the medication when I couldn’t leave the house. Having the support network and being able to use it was so important. I am very grateful to all of them who gave me the help. Someone recently commented that that’s what these people were trained to do — that’s true to some extent, but I needed to want to accept their help and tell them I needed the help.

The most important thing is perhaps knowing that you are not alone in this. If you or your wife would like to send me a PM (private message), please feel free to do so. Tap on the little envelope on the top right hand side of the page next to your name.

Thank you Gloria for your patient listening and for your generous offer. I (we) May take you up on that at some point.

Met with RO and surgeon yesterday. They (finally) had the results from all 3 scans. The PET scan result is inconclusive about whether cancer is still active. My impression was that PET was going to be able to tell if swelling and pain in tongue and jaw area was being caused by radiation damage or by new cancer. I was wrong. The oncologists are sufficiently concerned about the area that they are treating my case as though it is a recurrence of cancer until they see conclusive findings to the contrary. That means that they are expediting new MRI and CT scans and performing a biopsy on the area next Monday the 10th.

I’m not even sure how I feel about things at this point. On the one hand, it will be devastating if cancer is back so quickly. On the other hand, I’m glad that they are treating things like an urgent priority and I should find out one way or the other after the biopsy is complete (hopefully?).

After reading on here the invasive nature of the surgery required it is going to present a real physical and emotional challenge. Especially so after having been beaten down by the radiation and chemo treatments to date.

Thank you all (again) for providing this forum as a place to vent and unload the emotional burden. I always seem to feel a little better after writing a progress update - good or bad - on here.

Barry

Barry,

I’m sorry the news doesn’t look too good at this point. I find that sometimes it is the not-knowing that is the harder to deal with.

John’s experience made me really appreciate the Canadian health system, despite the fact that many people complain. We always got the feeling that the doctors were looking out for us and once there’s a diagnosis, there’s no delay, everything was dealt with as soon as possible. The experience has taught me never to complain about the high taxes we have to pay. I believe we got back more than we ever paid out in taxes through John’s cancer treatment.

There are really skilled doctors doing the biopsies. John had two lung biopsies because his metastases were in the lungs. The doctor said it was like poking a needle into a balloon without it bursting. Both times went off without a hitch. He was up and ready to go home in a couple of hours. He was given some freezing and he was able to ask for more if during the procedure he felt pain.

Maybe you would also like to inquire about immunotherapy if the results do turn out to be positive. John was in a phase 1 immunotherapy trial (prior to that, the drug had only been given to monkeys). Our MO at the time was full of optimism about immunotherapy and felt there’s a lot of potential down the road. It’s been about five years since so maybe they have made big strides or some other new drug or treatment is now available. It’s for this reason that I buy the Princess Margaret Hospital lottery ticket every year because the proceeds go into cancer research. Don’t give up hope.

Please let me know how you’re doing. I’m here and when you or your wife are ready, pm me.

Hi everyone. It’s been a while, so an update on my progress (aka, therapeutic venting session).

Met yesterday with RO and surgeon. They had (finally), results from biopsy, CT and MRI scans to determine if there is a recurrence. What a mix of news. The good - biopsy negative for cancer and both scans showed no progression in the suspicious mass in my tongue area. Yay!

The cautious- based on my symptoms and their look at my mouth, they are still suspicious that something may be “smouldering” down there and have scheduled an additional biopsy and mri scan to keep a check on things.

The clunker - the scans confirmed previous worries that the location of the suspicious mass would make me a bad candidate for “salvage” surgery. Surgery would require removal of jaw, tongue, some palette; would leave me a basket case; would have a low probability of success and would run a decent risk of killing me.

They used a lot of “cancery” words like “margins”, “quality of life”, “morbidity risk” and stuff, but I’m pretty sure of what they were telling me. “Your biopsy was negative which is great news because we can’t do much for you if there is a recurrence “. Hard to hear because that was (pretty much) my plan b. We talked about other chemo drugs and immunotherapy, but those were offered as a way to slow the growth of a new tumour and prolong life but not so much a cure. Short story? I’m “all in”on cancer not recurring.

Strange thing is that I’m feeling well. Energy mostly returned, relatively pain free, resuming most all activities, haven’t gained back much weight but otherwise feel well. Psychologically speaking less well. Have an appointment with a therapist on Monday to get some help with coping with feelings of fear and vulnerability and being more empathetic with friends (and spouse for that matter) who don’t seem too truly “get” cancer patients and the (unique?) suffering they endure.

Thanks again to this forum for allowing me to vent. It is really helpful and I feel stronger already after having written this. Best wishes to all of you who are fighting this disease or have loved ones who are. Live each day like its your last!

Barry, I’m sorry to hear the biopsy result. The kind of surgery you mentioned I’ve heard about before from one of the doctors who was at the time a fellow. It sounds totally brutal to me. Did your doctors mention drug trials? It’s something to consider as well. The chemo and immunotherapy that the doctors mentioned, if you agree to it, will mean you continue to be in the care of an MO, which I find a good thing (there’s probably some dependence there) rather than being sent back to your family doctor right away. John had a CCAC nurse (what do they call them now?) come to the house to give him support every week. So, it’s not a bad thing to stay on the MO’s radar. I’m glad you are seeing a therapist. I find it helpful myself and I think John did too.

Im so sorry to hear of your doctors "suspicions"!!!! You have already been thru so much. Im happy to read you are "all in" and will continue instead of being defeated.

In 2009 after 2 consecutive years of being diagnosed with OC, I heard my doctors tell me something close to what you just got from your docs. Please feel free to PM me anytime if you have any questions you would like to ask me. Dont go too much by my experiences... I had serious complications. Bottom line is I survived and am still around to help you and others facing jaw removal surgery. Its NOT an easy road but it definitely is doable.

Best wishes with everything you are dealing with!!!!

Thanks for the comments Gloria. To answer your questions:

Doctors didn't mention drug trials - I don't think we are there yet. They did mention some chemo drugs and immunotherapy which I gathered were part of a trial and error process, so maybe they did?

Sunnybrook has been really good. I don't see any sign that they are about to send me back to my family doc. The RO, MO, surgeon and Palliative Care doctors all seem engaged in my case. I still have a calendar full of appointments (for better or worse), but I will keep an eye on them.

I had a home care nurse during chemo to administer fluids to flush the cisplatin. Honestly, I am not sure what a home nurse would do for me now. I am feeling good and living as normal a life as possible. Biggest problems are the fears and insecurities associated with facing your own mortality at an unexpectedly early juncture in life.

Thanks again, your contributions on here are always thoughtful and must take you a long time. You are obviously committed to the cause.

Thanks Christine. Your indefatigable courage and persistence is exemplary. I always appreciate your comments on here.

Im here to help Barry, just let me know if you need anything and I'll do my best to help.

Its a very good sign to hear you are feeling so good!!! You will need to be in the best possible condition as you can going into whatever path you will be on.

When I was told to get my affairs in order back in 2009, I was shocked. I was feeling great, so good that I considered the biopsies to be a false positive. I had just finished a 25 miles bike ride with my son thru the beautiful Pocono Mountains and the next day I got the bad news. Of course, my thinking was not at all rational, it was wishful thinking and for a short time I was in denial that the cancer was back again! Knowing everything I had picked up from OCF websites and other members, I knew my chances of survival were slim. As the realization I had cancer... again, slowly sunk in, I started to focus on the positives. I already had my medical team. Since I was feeling so good, its a great sign. By feeling so good, that meant I was going into Round 3 strong, much stronger than I had been in at least 4 years. I would need that strength to survive such an invasive surgery that would be around 10 hours long. One of the biggest things I had going for me is the wonderful supportive members here who were in my corner. You too have many people behind you and who will be with you thru whatever route you take. To me, it really does help to think positively and know you too have a great many supporters from all over the world cheering you on.

Thank you (yet again) Christine. Your comments are both very touching and inspiring. The cancer centre here in Toronto has a fitness centre and classes specifically designed for cancer patients. My “wellness assessment” to test for preparedness for exercise is this afternoon. I think it makes sense to work extra hard to prepare for whatever is coming.