Post Treatment Questions: low RBC and dealing with throat pain

My husband was diagnosed with HPV P16 positive throat cancer. He had several tumors around his neck that had metastasized. He went has a tracheostomy and a g-tube placed prior to 35 rounds of radiation and 2 rounds of chemo. After 3 mos post treatment his PET showed cancer free- he will need another scan in about a month which will be 3 mos since the last scan. He is now experiencing excruciating pain in his neck, shoulders and clavicle area and it has been a nightmare. Radiation and chemo was a breeze compared to this. He is on 20 mg of oxycodone every 4 hours and that barely takes the edge off, he has tried acupuncture, lymphatic drainage massage (he has alot of inflammation under his chin, has tried muscle relaxers and other pain medications to no avail. He will be getting a medical dispensary card soon and we're hoping THC will do the trick. We are told that this is normal and it will be a long road ahead of recovery as much as a couple of years and that it maybe a new normal that he will have to adjust to. Has anyone had a similar experience and any suggestions for pain relief?

My husband is going on four months done with treatments and he’s not as good as he thought he would be. His throat is still bad and eating is hard some days. He’s tired more. We’re waiting on his pet scan results, all the waiting is so hard. He’s thinking the worse as he’s not better. Hard to see him like this.

Hi, I’m three weeks out of 35 radiation treatments and 6 chemotherapy treatments for
Laryngeal squamous cell carcinoma. Trouble with eating and drinking due to sore throat. Wondering how long throat pain will last. I continue losing weight but can tolerate Ensure although it burns initially.

Hello @kbates624 and welcome to our Head and Neck group.
Having pain from surgery and more so from radiation therapy is common but usually not to the extent you described. It looks like you are doing what you can. My only advice is to weigh each week against the previous week to gage if improvement in recovery is happening and is pain getting better to manage. If not, consult his doctors as pain is one area that medicine should be able to control.
The fight your husband is in will likely be the most trying time of his life. It is a difficult battle that must and will be won. Let’s see whom else jumps in here with an idea or two. Best of healing to him.

Hi, I’m three weeks out of 35 radiation treatments and 6 chemotherapy treatments for
Laryngeal squamous cell carcinoma. Trouble with eating and drinking due to sore throat. Wondering how long throat pain will last. I continue losing weight but can tolerate Ensure although it burns initially.

It took me 6 months to expand my diet from high calorie Boost and soups. It does get better. Post treatment for several months was hard. I am a year out and able to eat a wide range of foods. I feel like my throat is a bit smaller but have adjusted well to smaller bites. He will get better.

Some foods will be intolerable forever. Try everything soft. Vanilla milkshakes don’t burn as much as chocolate. Custard pie is great.
My experience is throat pain can last months. Radiation burns from the inside out and the repair by the body can take as long or longer than an actual burn. It is horrible stuff but better than anything else we have presently.
Two steps forward and one step back they say. I say Courage.
Oh and hey by the way Welcome. I see you are new here. We all would rather be welcomed to a fishing club or similar but this is what the cancer people do so here we are. Toss a question out anytime and someone is bound to pop in.

Very helpful, thanks for that.