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.