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

Hi Kevin,
I work shift work (in Emergency Communications) so I think that may be the reason that the RO doesn't want me working. Also I will be having weekly Cisplatin and on those days I have to be at the hospital from 8.30 am and then have radiation at 4.30pm. I'm not sure how long the chemo takes but I'm assuming at least 6 hours. Also the MO said that the nausea etc may last for several days afterwards. I was suprised that I was given such a strong NO to working when we asked the question, because my employer was happy for me to adjust my hours during treatment. At the end of the day, though, I want to do everything I can to rid myself of this nightmare so I will do as I am advised. My employer is very supportive and I will not lose any pay as a result of this. I am very, very lucky in that regard.

Hi William,
I'm not sure what will happen as far as a feeding tube goes - the RO made a fleeting mention that it may be required but other than that I will have to wait and see how I respond to treatment. I've always had a healthy appetite and even with my previous surgeries had no problem eating and lost no weight. I know that this will be a very different experience but I'll take it as it comes - and do whatever I need to to get the best outcome!

Eileen,
I will definately follow up on the massage question next week. If there is a way to reduce the swelling I would love to do it!

Regards to All - Sue

I had my Chemo Port and Peg Tube in place before I started my treatments. The Peg tube was a life saver. It was a little hard to get use to but I only lost 22 pounds, I couldn't afford to lose much more. It was about 3 1/2 weeks into my radiation that I could barely swallow water let allow eat anything. Don't wait to long if you decide to get the Peg Tube because you will feel bad enough ( everyone is different ) with then having to deal with surgery for the Peg Tube. I remember being on here before and during my treatments looking for help, support and answers and now I can't believe I am here now during my remission trying to help and support others what a journey. Stay strong and get your rest. I will be thinking and praying for for you come June 17th. Take care !

Hi Tammy,

I'm really glad to hear that you are doing so well! I had my second radiation treatment today....only 28 to go. So far, so good. I spoke with a nurse yesterday and she said that because only the left side of my mouth and neck are being treated I may be able to get by without a PEG at all. She did say that a gastric tube was more likely than the PEG but I may get by without either. I'll just have to wait and see.

I have my first chemo tomorrow and a a bit nervous about that. Hopefully, because it is weekly I will not have the side-effects with neuropathy and hearing loss that many seem to have had. As you said everyone responds differently but I'll keep my fingers firmly crossed.

Wishing you continued good health!

Sue

Hi Sue,
Glad your first 2 radiation treatments went well.
How did you go yesterday with the chemo?
Wishing you all the very best over these next few difficult treatment weeks. If Melbourne was not so far from Sydney I would have liked to have visited.
Luv
Gabriele

Hi Gabe et al,

I had my first chemo today and I have to say I feel great. There was alot more to it than I expected lots of electolytes in the first bags of hydrating fluids and then steroids, anti-nausea meds, a diuretic and then the Cisplatin followed by more hydration. 6 hours on the drip in all, followed by Radiation. A long day but as I said I feel really well. A friend of mine, who is a nurse, seems to think that's due to the effect of the steroids. Anyway I'm making the most of my good mood and energy! So far no fatigue, nausea, sore mouth, throat and only some minor swelling. I have been given anti-nausea meds to take for the next two days, so hopefully that will keep any problems at bay. Only 5 more Chemos and 27 rads to go!
I hope you're well. Best Wishes.
Sue

Hi Sue,

I'm so happy to hear that you are handling everything so well. You're a real trooper and an inspiration.

Good luck and keep the good news coming.

Jerry

Just A Quick Update!

I have just finished my 2nd Cisplatin and 8th radiation treatment. Still holding my own and am still able to eat and drink normally. I have a few sore spots starting to appear in my mouth and throat but no problems with mucous or saliva, as yet. My skin seems to flare up after some treatments but so far it's not giving me as much grief as the neck dissection did. My range of movement is still really good and I'm sleeping okay and I'm not suffering any major fatigue. Four chemo's and 22 rad's to go! Can't wait till it's over!!

The worst part for me is the travel to and from the Hospital 5 days a week - about an hour each way. Anyway if that's my worst problem I think I'm doing okay.

I hope that everyone else who is going through treatments at the moment is also doing well.

Best Wishes

Sue,

Good luck in all your treatments! I'm glad your employer is so helpful during this time. Mine has been too thankfully. In Feb. my doctor gave me a note for work saying I would return in July. I laughed thinking I would be back by April or May at the latest.Well, now my goal is to return on July 19th - guess the doctor knew what he was talking about! I had lots of energy when treatments first started, by the end of them I went from the bed to the couch and back to bed(plus trips to bathroom to get sick).I now have more energy, starting to eat solid foods,gaining a LITTLE weight - better than losing,and in general feel pretty good most days. Peg tube comes out today - I'm nervous about that but can't wait until it's gone! Hang in there, it might get bad for awhile but it will get better. I know how you feel about the traveling - the hospital where I had surgeries and speech therapy is 3 1/2 hours away. Luckily I diidn't go that far for treatments though. You'll be in my thoughts and prayers.

Sue:
I worked through my 5th week of treatment and then one day just hit the WALL!! There were pros and cons to working and staying so active but your doctors know what's best for you so listen. You are doing AWESOME!! Keep the positive attitude and you will be amazed how quickly it will go by and you will be moving forward with your life! You also, Karen. Congrats on dropping that Tube, however I'm sure it became a love/hate relationship (Sort became attached to it, Huh--LOL). Anyway, great job to both!!
Sincerely,
Steve

Sue,

Lets hope you continue to do well in your treatment but if you need us, we're here.

Sue, It's great you are doing well so far. Those steroids they give you with chemo can make you feel really good. Whenever they gave me a steroid I would say it made me "feel better than I should feel" But it sounds like with you it isn't just the steroids, but you just are doing well overall. I hope it continues thruogh your treatment and, as David said, one way or the other we'll be here.

Nelie

Thanks for the encouragement everyone!

Two weeks of treatments finished - and I've struck a hurdle - I just hope it's not going to be a big one.

My tongue is not in my treatment area and I have a device that goes into my mouth before radiation Tx to push it across to the right. My first SCC was on my tongue but it was a very small T1 with good margins so they decided that it was safe to leave that out of the treatment area. I developed a couple of small ulcers on my tongue just after I had the the mouthpiece and mask made and my simulation sessions. I put them down to a bit of trauma associated with that fairly arduous morning. The week before I was to start Tx I saw my ENT to have them checked and he discussed the ulcers (which were very small) with the RO. They decided that they should not delay my treatment (which including the tongue would) and that they would keep a close eye on the tongue, but not include it in the radiation field.

My tongue is now the sorest part of my mouth and the ulcers are bigger with lots of leukoplakia and red patches around them. My RO didn't like the look of it but she says that it does look superficial. I now have to see my surgeon on Monday afternoon (after rad Tx) The RO doesn't think these changes are due to TX as other changes in my mouth due to the Cisplatin and Rads are quite different. I guess once my ENT takes a look they will then discuss the options, which the RO indicated may be to suspend traetment to have this surgery (and restart ASAP afterwards) or to wait until the end of treatment and then have it. The way this 'thing' has grown and changed over the last week I can't see them waiting too long! Anyway, I will hopefully get some answers on Monday.

As far as the treatments go I am still coping well with some sore spots starting to develop in my mouth and throat. I am having to start on mushier, less acidic foods - orange juice and tomatoes now sting - and I have to watch crunchy foods as they seem to scratch my throat. I guess in another week or two I will be on all soft foods and liquids.

This is just a 'stress' that I could well do without at the moment!

Sue

Sue:

I'm sorry to hear you are starting to struggle with your treatments. Hopefully your ENT will have some encouraging news when they look you over, and this is just a small temporary setback.

Even if its starting to get difficult to eat, keep pushing food and liquids. Eat as much as you can, it will make your recovery much easier if you get proper nutrition.

Best of luck,

Christine

I'm Half Way!!!!!

I have just finished my 3rd week of treatment and am doing fairly well. I had an excisional biopsy on my tongue last Tuesday afternoon under general anasthetic and then an overnight stay in hospital. I had radiation before the surgery and my RO was kind enough to give me a two day break before I had the next treatment. My chemo was also cancelled for the week because they felt it may impact on my tongue's recovery from the surgery. Because my tongue is stitched I had to have it sprayed with anasthetic before I could have radiation on Friday and Saturday, but at least I was able to get the bite block in and have the radiation.

My taste is still intact, but I have ulcers (mucositis) right through my mouth and down my throat which, along with my sore tongue, impacts what I am able to eat. I have not lost much weight so I think that I am still able to eat enough - I hope that this continues to be the case - I am hoping to avoid a gastric tube or a PEG. All the hair behind my left ear has fallen out (on Wednesday night it all fell out at once).

My skin is red in the radiation area and I am getting a bit of a rash as well. It doesn't hurt (partly because alot of the area is still numb from my neck dissection). I have also been put onto a low dose of morphine (comes in a raspberry flavoured sachet) and this has done wonders for my overall comfort level. I have one sachet in the morning and one at night. I can also top up with another morphine based medication for breakthrough pain. I had a bit of nausea for the first two days but that has gone now.

On a really positive note my biopsy results were clear of cancer! All in all I have to say I've had a good week!!

Best Wishes to All

Sue

Hang in there, Sue! Glad the biopsy came back clean and hope the rest of the treatment goes smoothly.

Most of us lost our hair on the back of our neck because that's where the rad exits. It will grow back but it will take months.

Good news re the results and hang in there as the ride will get tougher now. If you start to loose weight or can't seem to get enough calories try Carnation Instant Breakfast VHC as it has a whopping 560 calories in an 8 oz can.

I'm in the minority David. I lost mine on my chin , neck and the sides of my face. I kinda liked not shaving every day. LOL Back to the grind now tho.

Hi Sue,
It is great to the get the update from you and especially as it is written with such a positive attitude. What good news that the biopsy was clear of cancer.
It still sounds horrendous what you and others here are going through at the moment but a least you are on the downhill run.
Wishing you all the very best for the rest of your treatment.
xoxox
Gabriele

I had the back of the head hair loss, which is almost back to normal now. I also had the sides of the face and neck. The sides of the face are back some, but a few swipes with the razor is all I need. No need to shave the neck, except for a few hairs just below the Adams Apple.

Jim,

I also lost the whiskers above and below my chin line but the ones above my chin line came back and even darker at first but as I've said before the ONLY long term benefit from my radiation has been not having to ever shave below my chin line.

At first I thought that my beard was coming in darker (especially moustache area where I never really lost hair), but then realized that it really wasn't -- it just appeared darker in contrast to the skin surrounding it, which did not have any hair growth.

With all the wrinkles and bumps on my neck for the dissection, I would sure run from a razor. My Daughter bought me an electris one as the Dr wants. I bet I would have bled to death by now . My daughter is an OK gal that luvs her Daddy. I guess the few thousand it cost to put her thru school was worth it. LOL

Jim,
If it looks similar to my surgery site a razor with a blade would be like using a chainsaw to make toothpicks. I have a patient who was in a similar position and he did some research and sought out an esthetician who utilized an Intense Pulsed Light (IPL) machine to remove hair. He went for 5 sessions and in his own words, "..smooth as glass with no regrowth for the last 6 months." I am currently looking into the method and risk/benefits of this system. I also intend to contact an oncologist friend to see if IPL could harm or cause more problems in an area that has been treated for OC. I'll keep you all posted on any info I get.
Brian, have you heard anything about IPL hair removal post-cancer treatment and if so any words of wisdom or caution?
My patient is happy and he was given the OK by his Doctors.
This by no means mean that it is safe for everyone. Check with your doctors.
I may even check it out so that I don't have to play with sharp objects around my neck in the morning with one eye open. God knows that I have hacked a few good steaks off over the years and shed a few pints and I'm supposed to be good with my hands! LOL
Cheers,
Mike

I have nothing to add to this. I use an electric razor only under my chin. Everywhere else I was nuked to the level that all follicles were completely destroyed, so I have a perfect goatee left showing exactly where the radiation ended around my mental foramen on each side. So shaving for me is a 30 second deal with an electric. Here in CA the obsession with esthetic surgery and all the collateral things is beyond belief. There are laser hair removal parlors on every corner it seems and more cosmetic surgeons than Starbuck's... which are on every corner. We have parlors that specialize in Brazilian waxing for those inclined (big in small bikini CA beach areas) We are a obsessed society of aging people that wish to look like 20 year olds. I recently ran into a 70 year old woman that I know from a eatery locally who used to have more chins than a Chinese phone book - who now is stretched so tight that there isn't a wrinkle on her face. It's wrong on so many levels, her hands still look like those of a woman her age....

I watch this with some associated pains of my own about my particular esthetic compromises, but facial hair isn't one of them. I'm more concerned with the increasing lack of it on top of my head.... Go electric!!! That's what I was told when I left the hospital and never went back to a blade.

Brian,
You never cease to amaze me with your humorous unfiltered comments on topics like this. (my ribs are still sore) You are certainly a grounding force when it comes to the sometimes insane extents some people will go for the sake of their vanity. Thanks for bringing me back to reality.
If only those investing in their surgical fountain of youth realized how lucky they are maybe, more money could be put into the coffers of the real areas of greatest need.
Yes, I did offer up a suggestion that propogates this industry and after reading your post realize that facial hair is really low on the totem pole of worry for those who are undergoing or are/have been treated for OC.
The fact that I am able to shave in a semi conscious state and draw a lil blood now and then is certainly better than the alternative I was faced with years ago.
Brazil...I just may have to try and visit on my next vacation.
Cheers to your goatee Brian.
All the best.
Mike

On the other side...as I said I lost all the whiskers under my chin line so I only have to shave above my chin line. I use the same razor (Trac III) and same shaving cream I have always used and I even shave below my chin every once in a while just to feel normal. I see no difference in my radiated skin with emphasis on the word see. I still cut myself occasionally while shaving and I bleed just as I did before.

Thanks for the replies and encouragement from everyone!

I will keep my fingers crossed that the hair on the back of my head will grow - back but facial hair I can live without! (Not that I'm admitting to having much.)

I had a bad experience today and am wondering if the same thing has happened to anyone else. When going through the hydration phase of my chemotherapy today I had to go to the toilet. Drip trolley in hand I went to the nearby bathroom and on my way realised that I was swallowing what I thought was alot of salty saliva. When I got to the bathroom I looked at my mouth and realised that it was full of blood! I don't know how much I swallowed but it was flowing freely into the basin and wouldn't stop. I then got nursing help and they called my MO straight away.

The nurses applied some compresses to my tongue, which they identified as being the source of the bleed. It stopped within 10 minutes but it scared the hell out of me. The closest thing I can equate it to is like a severe nose bleed from the mouth. This has never happened after previous surgeries and the MO believes that radiation following my biopsy is the cause. A bit of the forming scar tissue on the side of my tongue evidently pulled away. The nurses said that I had a 1cm raw ulcer in the roof of my mouth and extensive mucositis, with open smaller ulcers pretty much everywhere else. (plus radiation damage and the raw biopsy area on my tongue) Some of these were also bleeding after having gauze put in.

After this 'episode' and an all clear from the MO my chemotherapy and radiation went ahead. I have had no other problems in the 9 hours since this happened but am worried that it might happen again. The Dr and nurses have told me to call an ambulance if it happens at home.

Is it likely to happen again? Has anyone had a similar problem - and if so I'd love to know what happened and especially if it recurred. I have 13 rads and 2 chemos to go.

Thanks everyone.

Sue

I didn't have any surgery and I never had blood in my mouth and lets hope yours was a one time thing but please do not hesitate to call 911 if it ever happens again. Without my wife my sorry stubborn butt would not be posting here today so I have learned the true meaning of that phrase...it's best to be safe rather than sorry.

I had almost exactly the same thing happen to me - went to the men's room early in radiation treatment, just after the treatment itself, went to spit in the sink, and a good quantity of blood emerged. I was scared to death and ran back to the RO. They checked me over and said it was initial irritation of the soft tissues, caused by the drying out effect of the radiation. Never happened again, but scared crap out of me that day!

Thanks Jeff and David,

It is reassuring to me just looking at your 'signatures'. Thanks for the quick input - I really hope this is a one off too - they guesstimated my blood loss at about 1/2 cup. Doesn't sound too much but certainly looked like alot!

Sue

Sue, That also happened to me a couple of times from ulcers in my mouth caused by the chemo and radiation. The first time (also in the MOs office) it really freaked me out. It is worth remembering that a little blood moixed with anything else, such as saliva, can look like a lot more than it is. Nonetheless, don't take any chances and call 911 if it happens to you at home.

Nelie

Hi Sue,

I can't add any advice to what's already been said having had no experience like yours, but just wanted you to know that you are in my thoughts and prayers daily.

Jerry

Thanks Nelie and Jerry,

I have had no problems today with bleeding, so I'm hoping it was a one off. I've stuck to cold drinks today, but if my RO says it's ok I'll start back on some warm soups tomorrow (I crave some variety!). I have to say that out of everything I've been through in the past 16 months this was probably the most scared that I've felt - thankfully it was only 10 minutes of terror!.

Sue

Hi everyone!

I can't believe that I have only 5 more rads and 1 chemo to go! It feels so good to be within sight of the finishing post.

This has been a tough 5 weeks so far and while I know that the worst may not be over yet - I feel confident now that I will make it and be stronger for the experience.

I have been going through mood swings, severe mucositis, severe constipation, burns, tiredness etc. I have avoided having either a PEG or a naso-gastric tube by keeping well hydrated and eating regularly - with the significant help of lignocaine and other drugs.

My mouth and throat are sorer this week but I am better at pain management now and my RO was impressed by how well I am doing considering the collaterol damaage that exists internally and externally in my mouth, throat and neck. Given my relatively low dosage levels of morphine she seems to think that I have a much higher tolerance for pain than is normal. This has to be a good thing with this type of cancer!

Anyway I'm doing well, except for the occasional emotional overflow, and very much looking forward to the end of next week!

Thanks for listening!

Sue

Sue,

Congratulations on your strength in getting through your treatment so far and your great attitude. With the end of treatment so near, I feel your excitement.

So much has happened since we last emailed each other towards the end of last year. I will be heading out on a 2 week vacation tomorrow and will be off the forum until I get back. I will be thinking of you, especially next week, when you complete your chemo and radiation.

I wish you a speedy, uneventful recovery.

Jerry

Sue,

You are my hero!! That's the key...staying hydrated and nourished but most of us learned the hard way.

Sue, you have the attitude of a winner . Go gal go as you will whip this real soon I bet.

Sue, you have the attitude of a winner . Go gal go as you will whip this real soon I bet.

Sue I hope that this next week passes quickly. That light at the end of that tunnel is getting closer.
Wishing you lot's of sunshine when you get there. Will be thinking of your during this coming week as I have been after reading your post's over the last year.
Luv
Gabriele