The end of week 2

susanc1 · August 2016

I thought I would check with a progress report on hubby's progress to date. He is getting 8 chemo visits...doctors but him on Erbitux and is at day 10 on radiation. So far absolutley no ill effects at all. He was encouraged to eat and to actually put a bit of weight on which he has been doing becuase he doesn't want tubes. The chemo may cause him to have a rash and there are a few very mild spots on his face, but barely noticeable. He does tire a little more easily bt that is about it. He is swishing, practicing good dental care, playing soccer and generally is doing very well. The radiation doc says that around the end of week three things will likely change for him. In the meantime, he is applying creams, doing mouth and neck exercises, hydrating and resting. We are taking each day as it comes...doing a LOT of talking about what is going on and for right now...he is good.

s

CivilMatt · August 2016

good start

susanc 1,

Glad to hear he is doing well. The treatment lulls you into the thoughts, “this isn’t too bad” and then week 3 gives you the start of a reality check (at least for most of us).

I did the 8 Erbitux infusions, 1 loading dose to check reaction and 7 normal doses. I got the acne over my face and torso, my eye brows and eye lashes grew longer, my fingers cracked and I lost my big toe nail.

Keep hydrating, keep your team informed, be prepared!

Matt

RottiesMom · August 2016

Good job!

I think it was around week 3 of radiation when I lost my sense of taste and lost saliva. Shortly after I went on an all liquid diet. I do the exercises, used fluoride trays for my teeth at night for as long as I could, applied lotion on neck, kept hydrated. I was on cisplatin so don't know about those chemo side effects.

Joanne

MichaelHill1 · August 2016

3rd week radiation

End of 3rd week radiation for togue cancer Sat. morning 2:00 A.M. Woke up and mouth is on fire. Pain, Pain, Pain. Have some meds on hand just in case this happens. Within the next 1, 1.5 hours, I put down 50 Ml. Oxy, 2000 Ml. Tylenol, 1,600 Ml. Advil. Most important is coconut oil for topical immediate mouth relief (1Tblsp). Just an idea of what it took me to handle the mouth pain. Oxy when I get around the 30-40 Ml. range starts to make me dizzy. Sometimes hard to keep down food. Good news is the pain did receed.

Mike

susanc1 · August 2016

sigh

Thanks guys....I agree it is easy to get lulled into a false sense of optimism. We have been told many times that this will be bad, but since we haven't gotten there yet it is hard to anticipate just how bad it might for him. I am anticipating things going downhil from here. Even as I write this his face his much more red than last week, although the doc said that if was going to have a severe breakout, it would have likely happened.....with the caveat that medicine is not predictable

I appreciate the support and feedback.

s

Fritz · August 2016

Hope it continues for you!

I hope your good fortune continues on.

I am just over 1 month post treatment and I too was cruising until about the middle of week 3. At that point, the mucous really began to set in and made swallowing solids very difficult. From that point on, it was liquid only and am still dealing with limited solids at this point as the mucous has not yet subsided. Pain was not an issue for me until around the last week or so and into the first two weeks post treatment. Slight skin issues around rad # 28 or so of 33.

Everyone is different so I hope his handling of the treatments continues down its current path.

Freddie

SylMarie · August 2016

RottiesMom said:
Good job!
I think it was around week 3 of radiation when I lost my sense of taste and lost saliva. Shortly after I went on an all liquid diet. I do the exercises, used fluoride trays for my teeth at night for as long as I could, applied lotion on neck, kept hydrated. I was on cisplatin so don't know about those chemo side effects.

Joanne

Joanne, when did you get your fluoride trays made?

Hi, Joanne,

I'll be starting rads at the end of this month or the beginning of the next. Did you have the fluoride trays made before you started the rads? A nurse told me that I should, but we are waiting for my jaw to open enough to fit the molding trays so the prosthodontist can make them. Were you able to keep on using them or were they too painful after a while?

It looks like I will be doing the weekly lower-dose Cisplatin along with the rads. They've said it will not give me side effects, but will make the radiation side effects more intense. Was that your experience?

Thanks.

Syl

RottiesMom · August 2016

SylMarie said:
Joanne, when did you get your fluoride trays made?
Hi, Joanne,

I'll be starting rads at the end of this month or the beginning of the next. Did you have the fluoride trays made before you started the rads? A nurse told me that I should, but we are waiting for my jaw to open enough to fit the molding trays so the prosthodontist can make them. Were you able to keep on using them or were they too painful after a while?

It looks like I will be doing the weekly lower-dose Cisplatin along with the rads. They've said it will not give me side effects, but will make the radiation side effects more intense. Was that your experience?

Thanks.

Syl

Trays

Hi Syl,

My dentist made my trays before I started treatment and started wearing them immediately, which was about 4 weeks before treatment started. I was able wear them until about the 4th week...then I just got too painful.

I really don't know if the chemo made radiation side effects more severe. I had 3 cycles of cisplatin 3 weeks apart. I did have side effects from cisplatin, namely nausea, especially after the 3rd cycle!

Joanne

Barbaraek · August 2016

Everyone responds differently

So fingers crossed that your luck holds and your reactions remain mild. If you run into problems...use the search feature to look at past messages for suggestions.

Barbara

SylMarie · August 2016

RottiesMom said:
Trays
Hi Syl,

My dentist made my trays before I started treatment and started wearing them immediately, which was about 4 weeks before treatment started. I was able wear them until about the 4th week...then I just got too painful.

I really don't know if the chemo made radiation side effects more severe. I had 3 cycles of cisplatin 3 weeks apart. I did have side effects from cisplatin, namely nausea, especially after the 3rd cycle!

Joanne

Thanks! Getting trays made next week.

Hi! I have not been able to have my fluoride trays made yet, because after surgery, my jaw would not open enough to accomodate the large molding trays that they have to put in your mouth to make the trays. It looks like now, after using a Therabite to exercise my jaw every day, I am almost ready to get them. Next week I'm scheduled to see my prosthodontist. Yay! Like you, I believe I will be getting Cisplatin, but instead of the three large doses, I am going to get a low-dose, once per week.

Thanks for the info, as it helps me plan ahead. I hope you have been able to get back into using the fluoride trays. I hear that we're supposed to use them for life. Oh, the new normal... :-/

Hondo · August 2016

Hi susanc

Sound like you have a great plan going, keep communicating with each other and keep him focus on anything that will help him passes the time away. I live on the PEG Tube and will be for the rest of my life, it is not bad just a part of my new normal me. If you think about it I would rather life with a tube in my belly, then a tube coming out of my nose or my mouth.

All the best

Tim

The end of week 2

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