Thank you to so many of you

T3rri

I just want to take a moment to thank so many of you for your timeless support and guidance for those of us caretakers trying to find our way. At times I have posted questions and received many helpful suggestions and have not had the time to get back on line to respond. This form has been my light in a very dark passageway that has guided me through my husband's treatment. Unfortunately we traveled 1:15 each way to go to chemo, radiation and the plethora of appointments that go with everything. 

My my husband has completed 35 rads/7 chemo (Cisplatin) for HNC HPV16+. No nausea, varubi was very effective and Zofran only the first week of chemo. We were able to get the manufacturers rebate for the co-pay of varubi which was very expensive (actual cost was $200 per pill/$400 every 2 weeks during chemo) people need to make sure they ask for it.  He has maintained his weight pretty well through a peg tube only losing 6% of his weight during the treatment - much due to the helpful suggestions from all of you. A bit more weight in actuality if you count the time from surgical biopsy to the start of treatment (30 days).... He did choose to get a port for chemo which was a godsend. Hydration is mostly by peg at this time but he can still swallow small sips of water. He's working on this but complains of the intense pain in swallowing. Ice chips are painful but the salt water/baking Soda rinses seem to relieve a lot of mucus. Jeans cream has done an excellent job with the skin around the neck in addition to samples of radioplex cream from the doctor. On pain medication and Xanax for anxiety. 

Now he is struggling with the recovery and getting a bit frustrated with the side effects. The mucus is so intense he often sounds like he's talking under water and ready to drown. I'm trying to get him to take more guafineson (Tussin) but he resists change since he didn't like it after trying once,  and blames any new issue on the change. Trying again today....

Turkey neck also seems to be an issue which I haven heard much about in this forum. The fluids seem to build up in the neck due to damage from the radiation in the glands. He was told to massage to alleviate. Is this temporary or permanent?

Hoping we see some improvement this week. Everyone tells him 2 weeks after treatment is pretty much the same hell but then he will start to see improvement. Praying that this is true. Gotta get through this so we can do radiation for prostate....the radical prostatectomy which was 95% cure rate didn't cure!

Again, this was a long way around to thanking y'all for your continued contributions and support to those of us who attend this forum. if you don't get a response right away, remember that the member might be overwhelmed at the moment but your kindness has not gone unnoticed. 

Any post treatment guidance or experiences are greatly appreciated, I do share them with him for encouragement. 

Eventually I hope to have the time, effort and passion that you have all displayed to help others going through this journey. 

Best regards, Terri

 

 

CivilMatt

post with wrinkles

Terri,

I am glad you made it to the post side and hope your husband continues to improve.

As for the “turkey neck” it is real, does get much worse and has had a few discussions on here.  I used to be able to tell a person’s age by their neck.  Now I am tempted to grow a beard to hide the wrinkles.

Woe is me,

Matt

T3rri

Turkey neck

Any thoughts or suggestions with turkey neck? Beards are in these days, unless of course the radiation on the neck prevents regrowth in that area which we were told....

CivilMatt

T3rri said:

Turkey neck

Any thoughts or suggestions with turkey neck? Beards are in these days, unless of course the radiation on the neck prevents regrowth in that area which we were told....

beard

Terri,

My actual neck area grows NO beard (now), but my checks and chin and very top of neck do.  It really is quite fetching.

Matt

AnotherSurvivor

I bought a suction pump to

I bought a suction pump to help with my mucus, and it was the best thing I did

https://www.medicalresources.com/shopping/proddisplay.asp?catalogid=14276

Kaiser at my loc (Lonetree, CO) is now giving a prescription for a portable one from Apria to all its head and neck cases.  I haven't had to spit mucus in two months, I just stick the wand in my mouth and off it goes.  Six weeks after last rad and I use it less, but still probably every hour.

Recovery in some ways is tougher than treatment.  I was totally focused on getting thru, with dates certain.  Now even tho I feel better every day, it is still disappointing that my taste is not back, my mouth goes bone dry with no warning, and even getting in +2,000 calories a day, I am not gaining weight (with my shirt off I look like something out of Gandhi).  And I have no idea when any of that will change, if ever.  But, today was better than yesterday, and I have plans for tomorrow.

yensid683

You're Welcome...

we are family here after all, and we reach out to help all of our family members.

Turkey neck is real, I developed it after rads and it does get smaller, but still remains.  I wear mine with the neck dissection scar as a badge of courage without hiding it behind a beard - I can't grow any hair on my neck either!

the most challenging thing for me after radiation ended was the amount of time it took to get back to some semblance of normal.  I used the port for most things, hydration and nutrition, but also swallowed anything I could - it is possible for your body to 'forget' how to swallow and I wasn't keen on keeping a port for the rest of my life.  I was able to have the port removed some 3 months after rads ended.

The two weeks post rads brings small improvements, and I do mean small.  Recovering from rads was so slow especially compared to recovering from other issues before cancer.  The 'two weeks' brought minor improvement and it was more like 2 months before I got to a point that I could actually eat or drink something without feeling like someone was running a hot wire wheel in my throat.

It did get better, slowly but surely.  Your husband may feel discouraged but if he knows that the process will take longer to recover from than anything else he's ever experienced, he may be more accepting and not so discouraged.

I hope things go well for you and him