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#196675 - 06/29/18 12:21 PM Re: Update [Re: Vicky1]  
Joined: Mar 2018
Posts: 42
CM57 Offline
Contributing Member (25+ posts)
CM57  Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 42
As far as the Chemo, the major side effect that I had was slight ringing in the ears. Also, I felt a little off the 3rd and 4th day after each infusion. I didn't want to say "queasy", because it wasn't quite exactly that bad. I was infused with 2 anti nausea drugs during each infusion, and also had Zofran pills to take on demand, but I only needed them twice, and I never vomited. So I can't complain too much there.
The other issue, was my veins being sore from being poked so much, so try not to let them put the catheter in the same area all the time. Especially if he needs infusion hydration for a week or two after the treatments. They let me keep the catheter in for a few days if I was getting consecutive hydration infusions.
Now, the radiation was a breeze at first. Don't be fooled, it takes multiple visits to kick in, but I see the side effect time line varies greatly when I read though the forums.
Throat mucus will develop which will cause sleep problems, and coughing, and just makes everything orally more difficult, like brushing and gargling. His neck will get sore from the skin being kind of burned like a bad sunburn, they may give you a skin cream, or you can purchase OTC aquafor. Just don't apply it for 4 hours before radiation, it's basically Vaseline, and I guess gets too hot during the radiation. Most people apply it immediately after each treatment. And the worst of the side effects, eating issues due to loss of taste, and throat pain. So it's good to know it's normal, and will be an issue during and well after treatments. Having a feeding tube, is a very complex discussion that I won't get into. I just managed to get by without one, but it was very close, my weight dropped very steadily the last few weeks, and up to a few weeks later.
I managed to just avoid it by getting hydration until I was able to swallow fluids without major pain.
Don't be scared by this, knowledge is good.
I was able to handle the side effects so much better because of the wealth of experience our fellow forum members provided here.


Enlarged left cervical lymph node in neck on 1/9/18. Male, age 60. Had retired from working as a computer technician and a project manager for almost 38 years, on 7/1/17.
Node was removed 1/16/18 and found to have SCC P16.
Chest xray clean.
Since then, PET/CT, slight activity left parotid, possible malignancy left lingual tonsil. MRI clean.
3 endoscopies, nothing seen.
2/26/18 Larryngoscopy,primary not found.
TORS 3/23/18 lingual tonsil biopsy.,biopsy negative.
Chemo/rads started 4/18/18.
#196693 - 07/03/18 11:55 PM Re: Update [Re: KristenS]  
Joined: Mar 2018
Posts: 28
Vicky1 Offline
Contributing Member (25+ posts)
Vicky1  Offline
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Joined: Mar 2018
Posts: 28
Maine
Found out today that they'll use Cisplatin. I didn't go to this appointment with Dad as I had to work, so I don't know much more about what they talked about. I do know that they said the day each week that he does his chemo, it'll be a 6 hour visit. They said they'll give him fluids before and fluids after and that it will take that long to do it. They said something different than the oncologist in Boston. In Boston, they said 6 1/2 weeks of radiation and 6 chemo treatments. Here in our home state, they said between 5 and 7 weeks of radiation and chemo. I think I may call Boston on Thursday to find out if this is correct, or something that got screwed up in translation.


My father's information:
63 years old
Former tobacco chewer- chewed from age 11 to age 63
Diabetic, High Blood Pressure, High Cholesterol
Diagnosed in February 2018 with Stage 4, N0 Verrucous carcinoma (VC) is an uncommon variant of squamous cell carcinoma
Mandibulectomy and free-flap reconstruction May 30, 2018
Slated to start radiation and possibly chemo in July 2018
#196694 - 07/04/18 12:09 AM Re: Update [Re: Vicky1]  
Joined: Mar 2018
Posts: 28
Vicky1 Offline
Contributing Member (25+ posts)
Vicky1  Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 28
Maine
Does anyone else here have Verrucous carcinoma? I am reading online and a lot of medical articles are saying that they treat most patients with surgery only, and that most patients do not have recurrence. One article says one patient of 22 got radiation after surgery and he had a secondary cancer start in his tongue 6 months after radiation. Maybe I'm just looking for a way out of this chemo and radiation, but I wonder if they're treating this like other kinds of SCC and shouldn't.


My father's information:
63 years old
Former tobacco chewer- chewed from age 11 to age 63
Diabetic, High Blood Pressure, High Cholesterol
Diagnosed in February 2018 with Stage 4, N0 Verrucous carcinoma (VC) is an uncommon variant of squamous cell carcinoma
Mandibulectomy and free-flap reconstruction May 30, 2018
Slated to start radiation and possibly chemo in July 2018
#196708 - 07/06/18 08:31 PM Re: Update [Re: Vicky1]  
Joined: Mar 2018
Posts: 28
Vicky1 Offline
Contributing Member (25+ posts)
Vicky1  Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 28
Maine
Just met with dad's radiation oncologist. They told us all of the possible side effects of radiation. It's scary stuff. They said he'll be getting 30 treatments and 30 grays. I'm even more worried now, I think. It's so much to go through! Just waiting for him to get his mask made and crying a bit. By the way, they changed his diagnosis from verrucous carcinoma to just squamous cell carcinoma.

Last edited by Vicky1; 07/06/18 08:33 PM.

My father's information:
63 years old
Former tobacco chewer- chewed from age 11 to age 63
Diabetic, High Blood Pressure, High Cholesterol
Diagnosed in February 2018 with Stage 4, N0 Verrucous carcinoma (VC) is an uncommon variant of squamous cell carcinoma
Mandibulectomy and free-flap reconstruction May 30, 2018
Slated to start radiation and possibly chemo in July 2018
#196709 - 07/06/18 09:30 PM Re: Update [Re: Vicky1]  
Joined: Oct 2012
Posts: 971
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 971
Toronto, Canada
30 grays over 30 days is quite doable. My husband had 70 grays over 35 days the first time, and then 20 grays over 5 days twice. The first time he had multiple side effects, the remaining two times were not bad at all although he was getting more grays per day (20 divided by 5= 4 grays a day). Has your dad had his teeth checked and fluoride trays made? That should be done prior to radiation starting. Keep records of his daily intake, get him a Waterpik so he can rinse the gunk out of his mouth (use it on the lowest setting with the tongue scraper attachment and with a bit of magic mouthwash thrown in), put a humidifier in his bedroom and maybe set up a station with things he might need in the sitting room. He’ll get through it and you will too. Wishing you two all the very best.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
#196712 - 07/07/18 12:01 AM Re: Update [Re: gmcraft]  
Joined: Mar 2018
Posts: 28
Vicky1 Offline
Contributing Member (25+ posts)
Vicky1  Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 28
Maine
It's so scary. The radiation oncologist said if she were in his shoes she would definitely do the radiation, but maybe not the chemo. She said it was a soft recommendation he have chemo because he had no lymph nodes positive and a close margin, but it was a clear margin. She said just the radiation would give him about an 80% chance of it not returning, and with chemo, too, his chances would be a tiny bit better. This, of course, made him rethink the chemo altogether. He asked me what I thought he should do. I don't know what to do! I said I think I would probably get both, to give him the best possible chance, but chemo is scary stuff. If he doesn't REALLY need it, should we put his body through that?

What is magic mouthwash?

He has not been to the dentist. They said he could wait for a dental clearance, but he's already behind schedule for treatment and they dont really want him to wait any longer. He doesn't have any teeth in his lower jaw on that side, the treatment area, and only two teeth on the top on that side. All of his other teeth are in decent shape. The radiation oncologist said he should see the dentist after treatment.

They made his mask today with a bite block in his mouth and said that should help keep the radiation from really dosing his upper jaw.

He is still having trouble opening his mouth really far, and he is going to keep doing his yawning exercises, but that's got me worried too. She said radiation can cause the muscles to get worse.

Last edited by Vicky1; 07/07/18 12:23 AM.

My father's information:
63 years old
Former tobacco chewer- chewed from age 11 to age 63
Diabetic, High Blood Pressure, High Cholesterol
Diagnosed in February 2018 with Stage 4, N0 Verrucous carcinoma (VC) is an uncommon variant of squamous cell carcinoma
Mandibulectomy and free-flap reconstruction May 30, 2018
Slated to start radiation and possibly chemo in July 2018
#196713 - 07/07/18 12:55 AM Re: Update [Re: Vicky1]  
Joined: Oct 2012
Posts: 971
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 971
Toronto, Canada
The magic mouthwash is given to radiation patient to help numb the pain from the blisters in the mouth and the sore throat. Different hospitals have slightly different formulations but they all serve the same purpose.
You can get him a Therabite to help him exercise opening his
mouth. I know some people use stacked popsicle sticks. There are also people who have tried the Therabite but don’t think it’s worth paying so much for it. You can do a search on the forum. There’s been a number of posts on it.
I understand that the chemo acts as a radiation sensitiser and helps the radiation work better. There are different kinds of meds that patients are given to help them deal with the nausea and the discomfort. If your dad is seeing the medical oncologist, make sure you talk to the doctor about your worries and see what the doctor’s opinion is. I’ve found that being open with the doctors has advantages to it.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
#196715 - 07/07/18 01:15 AM Re: Update [Re: Vicky1]  
Joined: Jun 2013
Posts: 176
KristenS Online content
Senior Member (100+ posts)
KristenS  Online Content
Senior Member (100+ posts)

Joined: Jun 2013
Posts: 176
alabama
You definitely want the magic mouthwash ... ask for that, and they'll know what it is, or your pharmacy will. As they said, it's got slightly different formulations everywhere, but it really does help. I hated that stuff and still used it because it did help.

After radiation and some healing, you can get your dad to a speech and swallow therapist. I saw one. Technically would be still seeing one, but took a break for the denture surgery stuff. She did wonders for me ... helped regain speech, taught me swallowing techniques, helped me learn massage techniques to help the muscle damage and ease the lymph node damage. Worth her weight in gold, and then some. I can't wait to get back to her.

As for chemo ... that's up to each person. I think the radiation did more damage than the chemo, honestly. But everyone will have a different experience, and who can tell what symptoms to blame on what, after too much chaos. Definitely talk to the oncologist directly, and ask about the side effects of each drug that will be in his chemo mix. They can adjust it to be what he needs, leave part out if it's not appropriate, and so on.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
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