ssc, hpv in tonsils on both sides and eblarged lymph node

Steven congrats on all the treatments behind you. I’m in week 5 and the side effects are really bad. Mostly the burns on my skin which I didn’t expect to be this bad with Proton Therapy. My Oncologist told me earlier this week I have only 6 weeks of treatments after telling me I had 7 throughout treatment. Now he retracted and went back to 7 weeks. It was like a cruel joke knocking an entire week off. Hang in there Steven we’ll both be on the other side of this soon.

also which pain meds are you on? My oncologist doesn’t seem to be willing to prescribe pain meds

Hi Marie. It’s okay to ask the docs as many questions as you like. My oncologist tends to say “trust me” a lot but I still like to engage conversations about different studies, trials and treatment options. I’m willing to do anything to save my life.

It sounds like your husband’s docs have a good thorough plan. I have met several men in other cancer support groups that had chemo and radiation and they are NED (no evidence of disease) years later. Not sure if your husband is on Facebook but there’s a great men’s support group on there. It’s called MAN UP TO CANCER. I can send an invite if you’d like. Take care

Steven glad to hear from you. You’re so close. Glad to hear you’re able to still drink the smoothies and soup. A nurse told us today that that last is the worst…but when it gets bad you know you’re almost done. Holding on to that thought.

Marie this is correct in a sense that the last of radiation is the worst but keep in mind I have read on here many times that after radiation stops you are still cookin so to speak--

Your skin may feel itchy and dry during your treatment. Some people develop radiation burn after their final session. That's because radiation keeps on working even after you finish your treatment.Oct 29, 2021

Also not to get anyone upset but to inform you that for a lot of people when the radiation is completed they will continue to feel bad or worse for approximately 2 week till they turn the corner. Below is one persons account of going through radiation treatment from another forum. Link to that whole discussion is at the bottom.

Take Care God Bless-Russ

When you finish the course of radiation - yes, the interior and external radiation damage can be a problem (who knows, you might get lucky, don't expect the worst). It's great to no longer have to go to the hospital every day - just be ready for the possibility that you might be debilitated at that point, and be prepared that you might need 2 solid weeks of pretty much bed rest and just ticking away time before you start to heal and feel better.

For me, it went something like this, over the span of treatment:

Week 1: First round chemo & 5 rads (felt fine, some nausea from chemo)

Week 2: (5 rads) minor tinnitus onset from chemo, some vomiting, radiation fine

Week 3: (5 rads) tinnitus fading, feeling quite good, no issue with rads some reduction in taste

Week 4: (5 rads, chemo) start to notice mucous problems, no burns yet, more serious nausea and vomiting from chemo

Week 5: 5 rads) noticeable exterior burns and sore, stretched skin, mucositis more severe, notice rancid taste to everything in mouth - can no longer eat or drink, become PEG reliant

Week 6: (5 rads) mucositis worsening, always have to carry spit bag, burns need intrasite gel and daily dressing, relying on panadol / neurofin but pain increasing

Week 7: (5 rads + chemo) mucositis debilitating, need to gag up mucous constantly, accidentally swallowing any precipitates a need to vomit, exterior neck burns are moderate and need dressings and intrasite gel, doctor escalates pain management to endone / morphine

Week 8: (first-week post-treatment) awful awful suffering, vomiting, spitting up blood, constipation, bloating, night cramps in legs, mucositis severe, pain moderate to severe, wounds still require intrasite and dressing for a few days

Week 9: (second-week post-treatment): exterior burns healing nicely, no longer require dressings, just moo goo (healing moisturizing cream). Pain lessening, but mucositis still awful, night cramps in legs

Week 10: (third-week post): exterior burns gone, pain better, mucositis still bad, but feels a little bit better, able to sleep for more than an hour or two at a time thanks to improving mucous, night cramps gone after taking daily vitamin & zinc

Week 11: (fourth-week post): turned a corner with mucositis, now still have to spit during day and night, but it's a fraction of what it was. Experimenting with foods but can't viably swallow them due to gross mucous - but start tentatively to sip drinks .. still mostly PEG reliant

Week 12: (fifth post): mucositis backing off more, can now take most nutrition and hydration via the mouth and thinking of getting rid of PEG. Pain is manageable, don't require anything more than panadol. Can't yet eat solid foods, although taste appears to have returned to at least 50% of pre-cancer levels

So ... that should give a pretty fair idea of how things have been for me .. you might get better (or worse) luck with side effects, but hopefully, it gives a little perspective. Knowing what to expect has been really tough, and it's easy to get into this habit of scouring Doctor Google almost daily. I think in the post-treatment phase the most important thing is to take it easy and not expect too much from yourself. Your body has been subjected to a major attack, give yourself time to rest and heal, and if you need help make sure you ask for it.

Oh yeah .. and on kids .. no, they have no idea, just "dad's been a little sick"

https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Your-experience-with-side-effects-from-head-amp-neck-cancer/td-p/25626/page/2

Yes, doctors have been very up front with us regarding the extra weeks of recovery. But we’re keeping positive in knowing that we don’t have to make the daily 2 hr round trip for treatment. My husband is staying so very positive as I continue to share stories so he won’t be surprised.

Thanks for posting all the info…much appreciated