Support needed!

Georgie74

Hi all, I'm about to start week five of seven of radiation for SCC HPV+ to the left tonsil which spread to a couple of lymph nodes. Ive had a radical tonsillectomy prior to treatment starting. I've had one round of cisplatin but was taken off that due to hearing loss in the high frequencies. My chemo doc put me on Erbitux and I've had one cycle but I seemingly can't handle that either - im extremely weak and shaky, I have the expected rash/acne, I've developed a cough and am very nauseous all the time. Zofran, compazine and Emend all worked at first but soon stopped working. From the radiation my throat where my tonsils used to be is extremely swollen and I can't talk without gagging because everything touches everything else. At this point I'm feeling like I've hit a wall and just don't know how on earth I will survive the next three weeks of treatment and beyond. I can still swallow but am so nauseous that I'm just pegging Ensures. It feels like if my throat swells more I might not be able to breath although I don't know how much of that is fueled by my own fear. Did anybody stop the chemo? I feel if I wasn't so weak and nauseous I'd cope better.....just taking a shower wipes me out. And is it normal for the theist to feel so badly swollen with three weeks to go?? I guess I'm seeking reassurance - feeling scared. 

soonermom

Please talk to your treatment team

My husband experienced almost all of this near the end of treatment and then for the two weeks after treatment.  One thing that got him through on the really rough days was only thinking about getting through that day.  Not can you do this for 14 days, can you do it for one day?  We did not stop chemo because he wanted the very best chance for a cure.  He did not want to look back and think I wish I had finished chemo.  However, based on his response and side effects, the treatment team did modify his last dose of Cisplatin and change some of his meds for side effects.  Keep asking them to tweak it.  Keep reporting accurately the severity of your struggle.  Also, he had constant issues with dehyration.  What you mentioned about swelling and gagging and not being able to breathe resulted in a trip to the ER and a scope of his throat, that was a special kind of fun at that point in treatment and I don't recommend it but it had to be done.  In the end I will tell you that lack of adequate caloric intake and lack of hydration were complicating absolutely everything.  I don't know if you or a caregiver are tracking your intake but I strongly recommend it.  If you are not using VHC Boost, 540 calories in 8oz, you might consider it if your calories are down.  It takes a lot of calories to fight this beast and recover.  Your treatment team needs to know about this even if you just saw them.  Things change so fast.  My husband could not speak at all this point and I had to talk to the treatment team.  They should be able to help you even if it is just reassuring you that you can breathe safely.  I am so sorry you are goign through this.  Let me give you the hope that 13 weeks post treatment, my husband is working full-time, hiking, biking, talking and working toward getting the PEG out soon.  It is not the same life he had before treatment but it is a GREAT life.  Hang in there and use your treatment team.  He had days just like you are describing but you need medical help.  

CivilMatt

I can faintly hear your bell

G74,

It is hard, but you can do it. Only 14 treatments left, only 14.  Even though I had a procedure all down, I once had to throw my hands up and ask for a do over.  The rads had not started yet, but I got completely off the table and rinsed, swished, gargled, swallowed and spit till I was ready, then away we went.

I was lucky, and the magic mouth wash worked great for my throat, mouth and tongue discomfort.

Additionally, the Erbitux was survivable.

My worst pain was the neck burn, but the silver sulfadiazine cream worked miracles.

You have to get the needed nutrition and stay hydrated at any cost.  Failure to do either of these can complicate the journey.

As soonermom mentioned, “one day at a time”.

Also, they make meds for anxiety, if you stress over the breathing.  To be able to relax when your throat is swollen helps.

Nothing about H&N treatments is a cake walk, you are subjected to all kinds of things your body rejects and you are asked do it, same time tomorrow.

Good luck,

Matt

caregiver wife

Please talk to your treatment team

Totally agree with soonermom.  Cough and weakness sounds like bronchitis or something besides cancer treatment may be going on.  Please tell your treatment team of all the above concerns. 

It does get better.

Crystal

Georgie74

Thank you a

Thanks everyone for your advice and support. This surely is a battle but one I will win. I have some anti-anxiety meds.....hooray for them!! Yet to get the magic mouthwash but will be asking for it tomorrow - it's only over this weekend that a sore has appeared where my left tonsil used to be. I'm taking in around 2000 calories a day - mainly through the peg tube and I've actually put two pounds on my skinny frame. This nausea is knocking me for six though. It's really good to hear from people that have been through it.....that there IS light at the end of the tunnel and that there is a good quality of life afterwards. I have two boys aged 10 and 6 - I'm looking forward to having the energy to play with them again  

SuzJ

Almost there..

Keep going! you are almost there, you just have to do one day at a time.

Rest a lot, it'll help.

I thought my throat was closing up too, and I ate ice like it was going out of style (reasoning - ice reduces swelling)

You can do it! I have faith!

brya3289

Hang in There

Keep at it as best as you can tolerate. Stage III SCC of tongue, HPV-, non-smoker or chewer, social drinker here. I similarly struggled in weeks 5 and 6 plus several weeks post radiation treatment. Definitely disclose everything to your treatment team so they can keep trying adjusting meds to help you get through treatment. Pain meds, anti-nausea, whatever it takes. It's not about toughing through this with as minimal medication as possible (whether it be nausea or pain meds that potentially help) - that was a lesson I had to learn.  It's about finding the right mix of solutions (whether it be meds or diet or accupuncture or other remedies) that help you get through the end of your treatment for maximum cancer cell killing effect for minimum chance of recurrence.  What works for one may not work as well for another so you have to go through this trial and error process to find what works best for you.  Keep at it.  Several of us have had similar struggles and its a challenge to find what works for you to get through treatment but KEEP TRYING!

donfoo

one day at a time

Sometimes you focus on the next 10 minutes, sometimes a hour, sometimes a day. When things get hard, just make each step forward a bit less. You will find yourself at the end of treatments, for sure. In fact, you are doing well by gaining weight during treatment. That is quite rare so you are doing some things well even though the suffering is huge. Hang in there, you will get through this.