New Community Member Here. Neck Cancer being treated with Radiation

"Individual results may vary", as the saying goes. Experience varies significantly from one person to another. I hesitate to describe my experience because it will sound as though I was somehow uniquely blessed. I had a few bad weeks but then bounced back very strongly and about two months after completion of the radiation (DAHANCA 35 hits over 6 weeks, daily + twice on Wednesday) I was recovering well enough that people started saying I looked great (in contrast to the rather cadaverous look I presented from loss of 20 - 25 pounds a few weeks earlier). It is an individual thing but attitude is very important so I can only encourage you to (as the British say) "keep your packer up". That recovery began soon after the end of active treatment and, with the usual ups and downs day by day, has continued to this day 5 1/2 months later. Hang in there and maintain a positive outlook. With very best wishes --- J

Are you getting chemo plus rads or rads alone? What stage is the cancer they are treating? You know from you lymphoma experience that it does get worse before it gets better but it will get better
C

I am gettng chemo along with Rads . I am at stage 1 . Honestly my lymphoma was a walk in the park compared to this. I could still estate when I went thru that .

I believe you head and neck treatment is miserable. Is the chemo causing the rash or is it the radiation? I don't want to diminish things but with stage one the cancer is curable and your half way there!
C

Oh man, do I hear you! My experience was just like yours and I finally accepted a PEG tube to get nourishment because I got to the point where I didn't even want to try to drink anything and eating was completely out. I hated that tube, but I believe it kept me from having a real crisis. I was able to have it removed 2 months after treatment ended, even though I hadn't gained enough weight (I loaded my pockets with keys and heavy stuff so it would look like I'd gained! :-D). The one thing that saved me was the mega-drugs I was prescribed...loads of Dilaudid and heavy dodage Fentanyl patches. These kept me pain-free and pretty chill. I wasn't allowed to drive while on the heavy doses, but I didn't care and once I returned to work, I was able to work from home.

All I can say, Michael, is "hang in there." I am now 2 years and 2 months post-treatment and, psychologically, have only just recovered. Like you, I had had cancer before- breast cancer in 2005 with chemo, radiation, surgery, the whole works- but it was super-easy compared to HNC treatment! If you feel at all inclined to read the blog that I kept during my treatment, it is here: https://andtheothershoe.wordpress.com/. I'll be keeping you in my thoughts and sending you a bunch of healing vibes.

Marin

love the healing vibes!

Welcome to this community- I share on behalf of my husband who was a physically active and healthy person that started enjoying an occasional cigar w/golf maybe 15yrs ago, yet we ended 2016 with a swollen mouth that led to weeks of tests while a growth closed his throat. In 6wks to dx, he lost 30lbs from his inability to swallow or eat anything before being told of lg tumor mass base of tongue. Thankfully pre-treatment we secured a feeding tube to enable him to start to regain nourishment for strength entering their “standard 7wk daily radiation with weekly chemo”. Agree by week 5 the worst was yet to come, we asked them to stop but docs insisted “7wk” protocol. What they don’t discuss are all these side effects, most HN patients suffer some level of swallow disorder and malnutrition during and post treatments. Expect heavy mucus developing in throat where you might need to expel wherever you are, Ken gagged for too many months and now almost 2yrs on this road he still struggles with excess mucus. Sadly he suffered the worst radiation result, as it collapsed his esophagus leaving scar tissue blockage preventing any function from upper esophagus- ENT and radiation onco docs just smile and say “at least you’re cancer free”-that was their job. I can only stress to maintain knowledge of your body, how it feels and what it needs, ask for a feeding tube to help rebuild your depleted nutrition, ask for swallow test during and post treatment, ideally one was completed pre-treatment for their “bar” to watch swallow progression/complications during treatment. Sadly here in FL swallow tests have not been part of the community-based HN oncology normal treatment procedure, so sadly my husband’s team plowed forward regardless of the permanent damage their chemoradiation protocols caused. We only heard base swallow testing done as part of overall treatment regiments post consults at Dana-Farber and since 2018 his current team at UFShands. I think most here will agree HN cancer is one of the worst with ongoing collateral swallow function damage and only recently the HN onco world is finally recognizing as a significant complication they need to review. You will be your best advocate so make sure you ask any/all questions to your medical team, stress your need for better nutrition and weight mgmt so they’ll order a feeding tube. I’ve personally been involved with now 3 c-diseases since my own stg-4 NHL dx in 2012, relapse in 2014 and then a metastatic breast cancer dx in bone marrow/bones 2017 plus my husband’s horrible journey in HN disease and yet we have limited ongoing research supporting the links between previous cancer treatments and secondary cancers yrs later. We can and need to do better for all patients battling c-disease. It is our collective voices that support patients, and I understand sometimes hard to do when we are the patient in daily struggles; knowing you have communities like this where one can share experiences will help strengthen you both during and post treatments, the more we as patients share can only help researchers improve both protocols and new therapy options. Wishing you that strength to finish strong and remain a loud advocate voice for the mission for cures.

the British say "keep your pecker up" which is a wee bit more intimate, but I hope you get the idea !
best wishes, scotty

Well I am in the process of finishing my Rads. I have 3 more treatments to give. I never did get the tube . The talked me out if it so I have been on liquids. Thing now is that my weekly chemo is in hold . They could not administer it since my blood counts are 2 low . Personally will take the break from that . I have though been getting a bag of a saline every Friday to get my hydration back up so that helps.. hopefully I recover fast . I want to get off this ride already .

You actually sound pretty upbeat which, I think, is helpful. I also had my chemo withheld and received hydration infusions. Also had low magnesium levels, so got a liquid mag supplement (Amazon) and fed it in through my PEG tube. Hang in there. You might not feel that your recovery is fast enough, especially over the next 2-3 months, but it WILL happen. Still sending those healing vibes your way...

Marin