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Joined: Sep 2010
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yogip Offline OP
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Hi all

My Dad was diagnosed with SCC BOT a month ago and just started chemo/rad. He was told by the doctors that he wouldn't feel the side effects for at least a week or so, but after only day two he is already nauseous and his throat is burning. He was hoping to have at least another week at work before he had to take time out. I am concerned as I know the treatment gets progressively worse and if it is this painful after only two days, I am worried about how bad it is going to get.

Did anybody else react this quickly to the treatment?

Thanks


Daughter of SCC BOT T1N2bM0 HPV+
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Yogip, I can only speak to radiation side efx, and for me it took a good couple of weeks before things started to go south. I hope your father's doctors are helping him treat the pain and nausea. Don't hesitate to ask them and/or bug them about this!

Courage to you both.
David 2


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Welcome to OCF.
As my treatment was not the same as your fathers I am unable to comment but hope others will jump in as well to answer your questions. Best wishes for your fathers treatment and keep asking away as the questions arise.
As David says "Courage to you both"
Where abouts are you in Australia?
Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Joined: Sep 2006
Posts: 8,311
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What type of chemo?

How many chemo Tx's will he receive?

You will hear this many more times but each of us can respond differently to this Tx so keep that in mind and only consider what we tell you about our experiences as a guide rather than the bible.

I was given the 3 dose version of Cisplatin (some are given smaller weekly doses which some say lessens the side effects. Even with the anti nausea meds I felt queezy after my first; worse with the second bag and horrible with the 3rd.

Re rad, I swear that I could smell skin burning after only my first rad but I had no pain until probably my 4th week. I quickly lost my sense of taste, first with things, not all, tasting bitter and then tasteless later on.

VERY IMPORTANT...to make sure he consumes at least 2500 to 3000 cals each and every day and at least 48 ozs of water each and every day. He will soon migrate to a liquid diet but he MUST keep with the cals and water EACH and EVERY DAY.

Did they fit him for fluoride trays?

Keep on top of the pain and nausea because those two things will really interfere with his caloric and hydration goals which believe me will bring on more adverse side effects.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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klo Offline
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Hi Yogip

Alex and I just finished treatment at the end of August (cisplatin weekly + radiation daily for 7 weeks) on Sydney's north shore so our experience is fresh. On "chemo day" we compared notes with others. Lesson One: Everyone is different.

My Alex "sailed" through radiation compared with the 16 weeks chemo beforehand but I think this is because he was really sick before chemo (had lost 15kgs by diagnosis, dropped another 12kgs by cycle 2, multiple lung collapses and 1 major lung surgery unrelated to cancer) so started sick and malnourished. By the time we got to chemoradiation, the chemo had shrunk his tumour, we had got feeding back under control, and Alex was positively buoyant. Lesson Two: Nutrition and hydration is an important part of treatment.

Alex's new friend Dave did not fare so well and started suffering at the end of week two and by the second last week he was nearly silent except to abuse his wife. Unsure why, whether it is stress or chemicals, but gentle souls can turn into devils during treatment, and I also copped more abuse in 6 weeks than during our entire relationship. Of course I was also under pressure and in pain so maybe my own coping mechanism was a bit damaged (I definitely felt very sorry for myself and resentful of Alex). Lesson Three: People are not themselves during treatment.

People will tell you to look after yourself but the reality is, it's difficult if not impossible - not until there is a hiatus when you can go away and quietly have your nervous breakdown in peace smile. Lesson Four: Plan your getaway and hang on to the thought when your day is dark.

Good luck and keep checking back here for tips and advice or just a vent. The people here are mainly American but there are some old hands all over Australia who can help with the Ozzie perspective (our healthcare system is just so different although actual treatment appears the same). Lesson Five: Seek support


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
Joined: May 2010
Posts: 638
klo Offline
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Oh and Lesson Six: Give credit to those who support. If it hadn't been for Gabe in the first instance to turning me on to this site and listening to all my crap at work, Karen Rose for helping with feeding, WendyG for putting it all in perspective, and ChristineB for her cautions about side effects, I would have tossed either myself or Alex off the balcony by now smile
Karen


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
Joined: Aug 2007
Posts: 1,301
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You and Alex are very welcome wink
Love
Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Joined: Sep 2010
Posts: 3
yogip Offline OP
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Posts: 3
He is doing cisplatin weekly + radiation daily for 33 days here in Sydney.

His taste buds are messed up all ready and the dry mouth has started (which is all manageable at the moment) but what has really knocked him flat is the nausea. He felt fine until the second day and then it hit him like a truck and he spent the next 24 hours vomiting and feeling awful. He was so bad at the hospital they put him on a drip before they gave him radiation yesterday. He was such a health nut before this and never got sick or vomited, so I think his body has gone into shock from everything that is happening.

They gave him some anti nausea meds yesterday and it seems to be making him a good bit better, but it is also the weekend, so it could be the break from the treatment that is helping too.

Re the radiation, he only had that pain I posted about after the second day and he is okay now. His jaw bone and his throat were quite sore that day though. Not sure if its the nausea hiding the pain now or it has temporarily disappeared for some reason.

Thanks for the tip re nutrition and hydration. He already has the PEG and he's making sure to get fluids into him through both. He's aiming for 2L per day, but it was impossible to keep anything down for the last few days. Hopefully the anti-nausea meds work and he can keep the food and water down this week.

Thanks again for all your responses. Its great to know there are people to talk to who have been through this and come out the other end. I have been browsing the site since his diagnosis, but hadn't posted before. My Mum is the one in the trenches with him as I have my own young family to look after. Its nice to have these tips as a way to help other than just helping with the grocery shopping. The tips have been very useful...from the big ones like looking after your teeth, to the little ones like using warm water in the PEG instead of cold! I just wish there was more I could do.



Daughter of SCC BOT T1N2bM0 HPV+
Joined: Sep 2006
Posts: 8,311
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BIG CAUTION on the use of the PEG....he should only use it when he absolutely needs it except I guess to learn how to use and care for it. He needs to keep swallowing daily and keep his throat muscles active. There is the theory that if one doesn't use those muscles they "forget" how to work in a very short timeframe which can lead to a lifetime dependence on the PEG. Now I didn't get the PEG so I'm sure there will be PEG users that will provide their true experiences but IMO it's way to early to start using it.

Before each Cisplatin I was given a pill (Emend) which I took one a day for 3 days and then I was given fluids and more anti nausea meds in a drip right before the Cis bag.

I assume he is getting IMRT radiation?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Sep 2010
Posts: 3
yogip Offline OP
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We've talked a lot about the importance of swallowing through the pain (another useful tip from this site). I'll be sure to caution him again, but at the moment he is just pouring water into it to get used to using it so when he really needs it he won't have to think too much about it. He is still eating and drinking as normal...well, as normal as he could, considering how sick he was for a few days.

It is IMRT radiation... but the doctors told him they'd destroy 50% of his saliva glands, that he'd never be able to eat a steak again and would prob need help learning to swallow again. Not sure exactly what this means as far as where they are aiming the radiation or if this is normal, but I am hoping they are just preparing him for the worst case. At least they also told him they think he has an 80% chance of making it through so the light at the end of the tunnel may seem far away, but it is shining brightly.



Daughter of SCC BOT T1N2bM0 HPV+
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