Hello All, I'm a 47 year old female, in the best physical [...]

Hi @fourlaffs, I am sorry that you are having to deal with this but glad that you found us. Just wanted to let you know that I am thinking about you and understand the frustration and devastation of dealing with a recurrence.

Hello Fourlaffs, I too had the same cancer, surgery in March 2013 followed by the exact same treatment regimen that you received. At 51 I did not think this would happen to me either. I like you also felt sluggish and just tired all the time. I am in good shape but I still feel like something is off. There was a scar in January when I had a chest xray done and they said they found a mass in my lung. upon further testing it turned out to be negative. It is difficult at times to stay positive, but if you keep focused on the positive things in your life it will see you thorough. Here if you need to vent. Thoughts and prayers are with you.

Thx u MrDan and Megm. I truly appreciate the feedback, nice to know that ppl took the time to reply to my story.

I'm anxious, scared, and desperately reaching out and clutching at anything that could support me in this journey. I haven't found a lot of resources for Head & Neck.

I'm still dealing with the side effects from the first journey, silva glad issues, dry mouth, ringing I'm ear, hearing loss and body temp issues I'm never warm. Triple sock, and hoodies during the summer. Any suggestions? Tips? How long does it take yo heal from surgery? This time, I'm not rushing back to work, I intend to heal.

I currently still have my drain in 7 days tomorrow and it's uncomfortable. Feels like it's poking my eardrum and up the side of my skull. Fingers x only 2-3 more days with it in.

Reoccurance is definitely a booger for H&N cancers. My hubby was a stage 4 at diagnosis and had a reoccurance as well..it happens. As scary and tedious as it gets, I know that one day, you will look back at this as a distant memory. We were told that by SO many survivors and thought they were crazy, but it's true. If you can't go 'one day at a time' then do an hour at a time. Do whatever gives you the most comfort, do not be afraid to ASK FOR HELP, and know that there are MANY patients out there that have exactly what you have , same treatment plan (28 rads, 3 mega doses of Cisplatin), same side effects and you are not alone in this! Hang in there girl and if you need one on one, please reach out to me. : )

Has your thyroid numbers been checked recently? Cisplatin can do a number on it! And since it stays in your bodies way after the treatment ends, it can be progressive....what tested okay for today might not be the same 2 months from now.

I haven't had the thyroid checked. Not that I'm aware of. I will follow up next week when I see the surgeon. Anything else I should be asking at the follow up appt? I feel like vid gone into shut down mode. Trying hard not to shake it but can't help feeling down. The pain doesn't help. Thank you for reaching out

Thank you @triage1968 it's comforting to know I'm not alone. I see the surgeon next week, I will follow up on my pathology, anything further I should consider asking? Will I have to do chemo and rad again? Did your husband have to? I'm going to mention my thyroid, I feel like I've gone into a protective shut down, Im in a funk, and just going though the daily motions of pain meds, and rest. This is so not my style but I think it's my way of coping with round 2 and being house bound for the past week.

My original journey was intense and I remained focus, calm, and had a lot of support. Round 2 has been disjointed. I'm not reaching out to my circle of support like I once did. I feel funny, and don't want to burn them out, not sure that makes sense.

Radiation in that area is very subjective. Some can be radiated in the same area but there are more risks due to internal thickening and potential permanent damage to vascular areas of your neck. Chemo is probably in the cards again UNLESS it is a clean sweep surgery...of course, there are so many scenarios. Are you on an anti-depressant? Just something to take the edge off although to most of us that would be a NED (no evidence of disease) written on our charts and a tropical vacation : )

If chemo is in the cards, ask if they will switch up or use Cisplatin again....keep reminding doc that you are having ear issues as this is a major side effect for some of any platinum based chemos, including permanent hearing loss.

Do you have a PEG tube for feeding?

BIG GIANT SQUEEZY HUGS to you!

I'm hoping the surgery was a clean sweep. Will know next week and will update after my consult.

I'm on an anti depressant - this too is a first. I was ashamed when it was prescribed in Jan but I recognize I was in a bad place. I should see my family Dr maybe the dose needs to be increased?

No PEG. I had a 40lb loss during my first journey. I couldn't eat or drink anything with the rad the final 3 week. I've since bought a vitamix, worth every penny! I've been able to maintain my loss and I eat clean. I buy organic and make everything from scratch. Now, with my neck dissection I've been able to make the most incredible protein shakes high in veggies to support me. Honest folks the vitamix has been a huge lifesaver. I make butter, hummus, soups, shakes, sauces, pesto, peanut butter, almond butterand so much more. Thx for the hug right back at ya. I'm very grateful for your reaching out to me. Thank you. It's nice to know I'm not alone.

You sound pretty on the ball to me, girl...you've got this! The cloud will move further away from you as you go on....think of it this way...the neck dissection was a HUGE surgery and you are DONE with it!! Find your silver lining no matter how small it is...it works wonders. Re: antidepressant- maybe a different one or a booster like Abilify to heighten its affect.