Hello Everyone,

I have been lurking around the board for the past few weeks mostly looking for details of what to expect for my Radiation and Chemotherapy treatments which start next week. I had two confirmed oral cancers last year, involving 4 surgeries. One was on my tongue (left lateral border) and the 2nd was gingival, behind my left back molar. My last surgery was a partial mandibulectomy in September last year. I had good margins and no neural, bone or vascular involvement and it was decided that apart from close watching no further treatment was needed.

All my subsequent scans and check ups were clear and I really thought that the worst was behind me! How wrong I was! I turned 50 in April and my husband I planned an escape to Singapore along with a week long cruise in South East Asia. I had a clear check up 6 weeks before but about two weeks before we were due to leave I started feeling that something was wrong. I became sure that there was a lump in my neck - but my husband (Andy) and teenage children couldn't feel it. Anyway because I was stressing my husband took me to the ENT who agreed that there was probably something there and sent me for a CT. This came back with a 1.7 cm node that was suspicious enough that he wanted to remove it. Long story cut short we decided to take the holiday (couldn't get a refund and didn't want to turn 50 in a hospital bed!)

After I got back I had a PET scan and needle biopsy that both came back NEGATIVE! Despite this the node had grown to almost 3cm and I had surgery on the 12th May. A frozen section was done while I was under and this confirmed that the node was cancerous with extracapsular spread. A neck dissection was then performed with 48 further nodes removed which all showed negative for cancer.

I woke up very sore and sorry with drains in place and a few days later came home from hospital. I still have a bit of swelling especially under the chin (looks like a big double chim) and lots of numb patches from my left shoulder to my ear (and behind it)and on my neck. Some spots are hyper sensitive and I can't stand anything touching them. I also have some , as yet, unresolved nerve damage to my lower left lip giving me a lop sided smile and misalignment when I talk. All else is good, if a little stiff. No shoulder or arm problems and a scar that is healing really well. I did have one scare, though, about 4 days after I got home. Lots of fluid built up in the centre of my neck just above where the collar bones meet. I felt like I was choking and finished up at the hospital to get it checked. All was okay though it wasjust oedema caused by the lack of lymphatic drainage pathways. I still have some swollen spots that come and go.

My RO has told me to expect similar problems during treatment. Has anyone else had problems with oedema during radiation - and if so how bad does it get?

I have found this board an invaluable resource for getting relevant and practical information on dealing with the problems that this disease presents, so I would like to pass on a BIG THANK YOU to everyone who has posted their stories and offered advice in these forums. I'm sure that there are lots of 'silent' watchers like me who have been able to get heaps of value from your postings.

Thanks for Listening!

Sue G

Hi Sue,
As I have you in my watched list I got an email when you or any of us Aussies have posted.
Am at work now so do not have time to write more.
Happy belated 50th and I hope you had a great holiday?
I am off for my check up at the hospital tomorrow Friday 13th :-))
More later
Gabriele

Hi sue,

I'm so sorry to hear all that you have been through since we last emailed. Happy birthday and it sounds like you had a great celebration.

As far as the lymphedema is concerned, hopefully there is someone at the hospital where you are being treated that can teach you how to do the massage techniques that will help your body to develope new paths for the lymph to be moved to the opposite side of your neck.

I hope things go well for you as you go through radiation and chemo.

Jerry

Sue,

As you can read I didn't have a ND but here is what I posted a while back about my concurrent chemo and radiation. Hope it helps.

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.

Hi Sue,
Find a good physical therapist to help with the lymph drainage and stiff muscles. Been certain to warn them about the sensitive spots on you neck. I had one, called a neuroma(nerve didn't go back in sheath properly), that drive me nuts for about 5 years before it settled down. Hopefully yours will not take that long.

Take care,
Eileen

Thanks for the replies Eileen,David, Jerry and Gabriele,

I can't say I'm looking forward to the next couple of months but I think it's always better to know what's coming, when possible. Hopefully I will not have too many side effects but my RO did say that it was not going to be easy and that I shouldn't work through any of this 6 week treatment period or for 6 weeks afterwards and maybe longer. When she first told me this I burst into tears I think because the enormity of what I was facing really hit me. I intend to take this one day at a time and hopefully will be able to find ways to work with the physical issues as they present.

I'm really lucky that I have great support from family and friends and my husband is taking 8 weeks off from work to be my main carer. I'm sure that we will have our moments but I think (hope) that he is up to the task.

This site is a fantastic source of information from people with first hand knowledge so I'm really hopeful that as obstacles present themselves I will be able to get support and guidance from people who have been there and done that. It means so much more coming from people who really understand the issues, rather than just 'think' that they do. Thanks David for all your info - I'm sure that I will have some more specific questions in the weeks to come.

I will speak to the Drs about neck massage - but I am doing some stretches and currently have a good range of movement - it's the fluid build up that's the biggest problem. Would I be able to massage my neck while I'm having radiation? I just assumed that it would be too tender to touch.

Thanks for your support!

Sue

Sue,

If you stick with this site you will find it to be invaluable, almost like having a doctor/nurse/caregiver/nutritionist/friend on call 24/7. Oh and FREE. You can't top that anywhere.

Hi Sue,
Whether or not you can have massage during radiation will depend on the type of radiation, where it is aimed and how badly you burn. I didn't have it during radiation because no one told me about it until much later, but I think I could have had it for the first 4 weeks. I had XRT and didn't burn neck until 5th week. You need to ask your RO about it.

As to not working, that depends on what you do and how soon the rads hit you. I went down for the count on day 9. Many people are able to work the first three weeks. If you are you also having chemo, it hits you a lot harder. I didn't so can't speak for that.

It's a nasty trip but you can do it. They are many people here to help you through this.

Take care,
Eileen

[quote=Sue G]Thanks for the replies Eileen,David, Jerry and Gabriele,
RO did say that it was not going to be easy and that I shouldn't work through any of this 6 week treatment period or for 6 weeks afterwards and maybe longer.
Sue [/quote]

File this in "for what's it's worth "

I worked every day except for 2 of the 35 I was under radiation treatments. I'd get up at the regular time, go to the office, and leave at 3:30 to go get my treatments. Gave me something to do most of all, I really didn't have that much trouble working.

Kevin

I wish to add my support Sue. I had radical neck dissection to remove tonsil and neck cancer in September, 2007 and finished radiation to right side of neck on January 4, 2008 ( 34 tx ). I continue to heal. The other comments pretty much spell out what's ahead but you will make it. By the way, I did go with a stomach tube after two weeks of tx and really don't think I could have made it without it. Pouring in the nutrients and meds versus having to swallow was a life saver - "only" lost 20 lbs. Your comment about "taking it one day at a time" is the right attitude and path. Stay strong. William