Hi everyone,

First, I want to say "Thank you!" for the existence of this site and the great content you've all contributed. Tonight's reading was the "Things I wish I had known" category - and all of that has been tremendously helpful.

Thank you, also, to the wonderful people who replied to my first posts and helped me know they've been there before me and that this is doable.

I was diagnosed with a 3 cm tumor at the base of my tongue, together with 3 infected lymph nodes on the left side of my neck. The total diagnosis took a few weeks to complete, as tests provided new data, but I count last December 29 as "the day" I learned, as that was when my doctor gave me the results of the biopsy. (Why do doctors always close the door before they say anything? Don't they know this is a dead giveaway that they're about to tell you something awful? )

He referred me to Stanford's Cancer Center; I attended the Head & Neck tumor board there on January 4. From what I can tell they seem to be pretty good medically. The different groups don't seem to coordinate well, though, and the doctor's seem more focussed on solving specific problems rather than treating the whole person. They also could use some sensitivity training in the administrative groups. The nursing staff is extraordinarily knowledgable, supportive and routinely seem to work beyond the call of duty.

I'm starting treatment next Thursday (Feb 8). I'll be receiving six weeks of IMRT (30 sessions total) in parallel with 3 chemo treatments of cisplatin, each of which will be separated by 3 weeks. (The tumor board decided surgery should be a last option, given the placement of the tumor at the base of my tongue.)

Thanks to comments here and elsewhere, I've had my teeth cleaned and checked, my hearing tested and some minor health issues cleared up.

Yesterday was mask making day. Not the most enjoyable experience (being strapped to a table, immobile and with green mesh molded onto my face never figured in my list of things to do) but the alternative is much worse. (What sadist designed hospital gowns?)

So, thanks to my wonderful support network, medical staff, supportive local library and, most importantly, the experience and encouragement of all of you here, I think I'm as ready as I'm going to be. Scared to death, but ready.

I don't know any of you, but you're very important to me. From the bottom of my heart, thank you for taking the time to contribute to this site and making things that much more bearable for those of following you.

I was treated in my jeans - I just had to wear the hospital gown top. As you lose weight (and they keep the treatment rooms very cool) ask for a blanket as well. The techs are very accomodating - they even gave me a pillow for my butt when I got down to 109 lbs.

I had the option of being treated at Stanford - it was a coin toss- I chose UCSF. Geographically it was the same distance to either. The RO there is in the Castle top 500 doctors in the US book (for RO/IMRT) and that factored in as well.

You'll quickly get used to the mask.

Did you get dental trays made? You'll need those for the flouride treatments.

Rowan,

When you start your Rad Txs you can wear anything you want but they will make you take your shirt off. You will lie on a towel and can be covered with a towel or blanket as Gary says and I was able to bring my own music which I turned up real loud as to take my mind off of the obvious. Boom box not ear plug music.

Eat as much as you can now and eat your favorite fatting foods because about 2 weeks into Tx you will loose your taste and appetite and it will be months amd months and months before the taste will make a comeback and your appetite will suffer as well.

When you want to know what to expect from the rad Tx just ask.

Rowan, being scared is very much a part of the process; I think anyone who says they weren't isn't being honest with themselves.

I agree with David; now's the time to eat everything you love, and lots of it. You'll quickly lose your sense of taste once radiation starts, and any weight that you may gain between now and then will melt away. Radiation is truly one of the most effective weight loss programs around...thank goodness it's not used for that!

During treatment, work REALLY hard on maintaining your ability to swallow. You'll hear a lot about PEG tubes; they can be really helpful for nutritional needs, but the risk is avoiding swallowing anything because your mouth and throat hurts. Your ability to swallow anything will disappear quickly if you don't work at it.

It will hurt, but it's important. A PEG tube isn't mandatory, although some feel it should be. I didn't have one, perhaps I should have at one point, however since I'd had one post surgery, not going down that road again was enough motivation for me to really work hard at swallowing my nutrition.

Ask questions, let us know how you're doing on your journey

Wayne

Rowan,

There were days I didn't know if I could do it, but that support network you speak of kept me going and fought the battle with me. Even my the 6 year old son who would pet my head or hand me a tissue when I was throwing up was in this battle with me. Make no mistake it is a daily struggle/battle. You are scared but ready, you will do well and be on the road to recovery soon. Time will pass, not as quickly when you are going through it, then one day you'll be done.

Good luck on the journey.

I appreciate the comments and advice; thanks for taking the time out to make them. Swallowing and saliva reduction certainly sound like the key challenges in the months ahead. Unfortunately, I am prone to mouth sores, and have been since childhood. Nothing but to grin (or grimace) and bear it.

Any comments on the experience of having combined radiation and chemo (cisplatin) treatments?

Rowan,

As you can see I had the same concurrent Tx. A lot of us did.

They gave my my first bag of Cis the morning before I had my first rad. Made for a very long and mentally taxing day. I live 40 mile one way from my Tx center so by the time I finally got home I was pooped.

No one hardley feels the effects from the rad the first 2 weeks. Same for my first bag of Cis. The 3rd week of rad I began to loose my taste and actually things tasted bitter. When I got my 2nd bag of Cis which was the beginning of my 4th week of rad, I got pretty nauseated and generally everything seemed to start going downhill from there. By the time I got my last bag which was the day of my last rad Tx, I was pretty messed up. In fact the 2 to 3 weeks post Tx were my worst and pretty much everyone else experiences the same thing.

I wrote a more detailed description of my experiences with chemorad which I have copied for you below. It was written about a month ago for other posters.

To, BB and Betty,

Hope this may help you in your journey through the dark tunnel. You will emerge.


Before I start they say that everyone can react differently to the same Tx but my experience in reading 1000's of posts from fellow patients is that we all have bad side effects but some have it worse than others. Judging by my readings I fared better than most and I think my somewhat nasty disposition helped me when I needed it most. That said......

It was probably the worst concentrated time in my life, both physically and mentally. I think the mental part is at least 50% of the battle. If you think about it, your neck region is the worst place you could be radiated. They tell you that you must (AND YOU MUST) drink at least 48 ozs water and 2000 cals each and every day. Then they burn your throat so you can't swallow or even eventually talk. So then they give you pain meds but the pain meds make you nauseated so they give you nausea meds and even they sometimes make you nauseated. All the while the chemo makes you nauseated. I also opted for no tube and I'm glad I did but it made it sometimes impossible to meet the daily goals. They basically set you up so that you can't win this battle but you will find your own way that works for you. The nausea was my worst enemy and they couldn't find anything that worked for me. I could open up a small drug store with the meds I filled and took one or two pills. At the end I finally had had enough and stopped taking all meds. I swallowed with the pain but at least I stopped the nausea. My nausea got so bad that it was easier to throw up than to breath so even after I stopped all my meds I went weeks fighting a gag reflex every time I swallowed something. Sometimes I literally held my mouth shut after swallowing just so I wouldn't throw up. It was nasty but that's what saved me and got me over the hump, so to speak.

Here's what basically will transpire:

The chemo may make you sick. The first bag I rec'd had no effect on me but the last 2 hit me hard. That may have had something to do with the weeks of rad I had rec'd by the time I got the last 2 bags, I don't know.

The rad will not effect you until around the 3rd week. Your taste will rapidly go away. At first things tasted bitter, then nothing, then I could taste some sweetness but not all. To this day choc tastes bitter.

Your throat will get sore and you will soon be on soft foods and liquids. REMEMBER your goal is to drink water (48ozs for me) and "food" (2000cals for me) each and every day. They will tell you and your caring friends and relatives will tell you all sorts of things to try. I found Carnation Instant Breakfast VHC which has 560 nutritionally balanced cals in a 8 oz can. That meant I only had to swallow 4 cans of the VHC to meet my daily goal. A life saver when your throat burns like hell. Unfortunately I didn't discover the VHC until 2 weeks AFTER my Tx ended but I'm glad I did and I still use it.

You will be given all sorts of meds to combat the pain and nausea. Don't give up if at first they don't work. Good luck on finding the correct combo.

I did not keep up with my daily water and "food" because of the nausea and then I would get dehydrated and then constipated. Guess what the side effects of those are...Nausea. I ended up in the ER 3 times to get IV fluids. Don't think your body will go for days with little or no food and water while being attacked with rad and chemo without shutting down. Your body will shut down if you don't feed and hydrate it so do your very best to keep up. I found that a lot of people visited the ER during Tx.

I lost hearing in the high frequency range due to the cisplatium and I have been told it's probably permanent.

I lost some hair on the back of my head and I won't have to shave below my chin ever again. I don't have fair skin so the outside of my face and neck faired a lot better than most re sunburn.

Your saliva will began to shut down and thick mucus will increase. I went for a few weeks trying to spit out the thick stuff with no thin stuff to help. I would wake up choking on the thick stuff and when I went to spit it out I would start to gag and then get nauseated. The thick stuff will become less of a problem as the dry mouth becomes more of a problem.

You will start to get really weak and may sleep or just feel like lying around. I stopped working all together for about 6 weeks and just laid in bed all day. Really boring time but I just didn't have any energy and I had the pain, nausea, dehydration and constipation, etc. Your strength is zapped as well. Taking a shower was equal to running a marathon. I stopped driving and really became very anti social. I just didn't want to be around anyone except my wife who as my caregiver and business partner I credit for saving my life. There is no way I could have gone through Tx without her. She gave me the caring love and the tough love when I needed it.

I lost 30% of my body weight and I couldn't afford to loose anything. I was very physically fit going into Tx. Nonsmoker, casual drinker and exercise nut. I road my bike 100 miles a week avg 20 mph with bike clubs but the TX still clubbed me over the head.

I felt like I was in a dark tunnel and I didn't come out of that tunnel until the 3rd week AFTER Tx ended. That's when I started to drink 3000 cals a day and started to feel almost human. My strength took several months to come back. My taste is almost tolerable but the dry mouth is still horrendous.

I am just 4 months out and am able to work from 9 to appx 7:30. Not as much as I used to but better than most at my stage. I am mentally pretty much back to normal and my nasty disposition has come back but I'm not as nasty anymore. When you hit the bottom which I did more than a few times I made many promises and I am trying to keep them. This is a humbling experience.

Again, you may have more or less problems with everything I mentioned but overall those are the main side hurdles you will face.

Questions ?

Rowan,

Somewhere along the way you probably have been told to watch for certain things following your first round of Cisplatin, to include ear ringing. Watch closely for that ringing as it is an indication that the Cis is causing hearing damage which is not uncommon. That was the only bad side effect I had from the Cis and I informed the staff accordingly. My Med Oncologist immediately switched me from Cis because of this. I am now over 6 mos. out of treatment and still have the increased level of ear ringing but can't really tell if hearing is damaged.

Bill D.

Bill,

I was tested post TX at Moffitt for hearing and they confirmed that I have suffered permanent high frequency hearing loss. They suggested that if it's gets bad I can be fitted for hearing aids. It affects me in a crowded setting with multiple sources of competing noise and in distingusting the orgins of noise when they happen away from me, say in another room.

My MO, also employed by Moffitt still says it might not be permanent.

Hi,
I am now two weeks into treatment with radiotherapy and weekly Cisplatin - for 6 weeks. I had scc of the tongue, two left lymph nodes and underwent a neck dissection and fore-arm free flap transplant back in December. I have also read and feared the side effects, but so far have been okay, despite the consultant's dire warnings about the cisplatin bringing forward the radiatio side effects. It's true that my mouth has become a little uncomfortable over the weekend and tomatoes are now off my eating list, but I want to persevere with the eating as long as I can, despite having a Peg tube fitted. I don't want to sound like I am tempting fate, but I haven't felt any nausea, nor is my skin sore yet. I know that this is a long road, but every day that's okay is good!!
David's detailed experieince and tyhose of everyone else has been really helpful for me to find out what is normal and what not to worry too much about. After all the treatment is worth it and this too will pass:)Sending you positive thoughts:)
Georgia
Georgia