My husband finished tx 5/22 so thought I would post update in hope it gives encouragement and hope on this journey.
I want to be clear on some things so not to give any false hopes. My husband had HPV
positive Tumour with Mets to 2 nodes with ECE in 1. HPV
tx is lower radiation total a 2 rad less and usually more focused areas. Chemo is 5-6 lower doses rather than 3 mega doses. This makes a huge difference but if your loved one or you are ready to start this HPV
treatment path you may wish to read the entire post.
I searched for a mapped out plan to follow of others who had found a way to make this journey more bearable and founds lots of bits here and there. Wished just one person had laid out all the details for me but nope.
So, I decided to give a fairly detailed plan of how my hubby worked EVERY single day, except chemo days, essentially lost no weight and ate steak, seafood, and all kinds of yummy food he couldn’t taste, cut the lawn, opened our pool and played a bit with our granddaughter.
Everyone’s journey is different, some suffer more than others but please don’t think his journey was easy because it was not. He lost all taste on day 14. He had severe thrush from day 18 through current, has tourched neck but never opened up, has bad dry mouth and thick mucous that sometimes choke him. He has suffered but not to the severity that many do and I truely believe it is because of the plan we followed.
He had 33 radiation and 5 chemo, cisplatin (was told 6 but started late due to scheduling and said 5 was enough).
4 weeks prior to starting tx he had surgery for lingual tumor removal and small section base of tongue (clear, no tumor on tongue) and radical neck dissection on right side. After surgery went from base weight of 190 to 182 but got weight up to 202 prior to starting radiation. On the day he rang the bell he weighed 199! No feeding tube, he refused. He is engineer, desk work, but worked M-Thur throughout. Not one day missed.
Here’s how he did it:
He followed all doctors (and wife’s) directions to a tee! Did swallowing exercises faithfully plus some, starting 2 weeks prior to tx. Cut back on some at week 4 due to pain.
Pain management: Gabepentin 900 mg 3x day, had him start about 1 week ahead of MD recommended schedule. As soon as started having pain started fentanyl patch, weaned up to end dose of 50mcg. Never used any oxy and only tried magic mouth wash once but hated it. Main pain control was cannabis vaped via medical device. (Legal in our state and he got medical card).
Mouth Care:Used salt/baking soda mouth wash constantly. By that I mean pro play 20-25 times a day. Brushed teeth and rinsed and gargled after ANY food and any time walked into bathroom. This helped with moisture and phlegm but most importantly kept mouth clean and believe helped prevent mouth sores. Secretions are super thick and stringy after tx. We have suction machine but not used it yet but strongly advise them to get you one. He uses the saline water to gargle and stays very hydrated to manage this so far.
Food: He ate 2800-4000 calories a day. Only 2 bad days when calories dropped to 2200. Used cannabis daily as main source of pain management and appetite stimulant. Could not taste food physically but kept mental image and would talk about how great the steak tasted while eating it. Took 2-3 times as long to eat because of pain swallowing but would say he was savoring the taste. When finished said, “I couldn’t taste a thing but it tasted great in my head!” Could slightly taste seafood, especially with lots of old bay seasoning, plus seafood very high in protein so ate lots of scallops, calamari, shrimp, fish. Stay away from clams, got caught in throat caused bleeding. Lots of mango pops. Whatever favorite foods are, eat them with your mind! He loves to good and is great so he cooked meals for us about 3- days a week, other days we ordered out, whatever he had a liken for that day. When no appetite, he had his non cancer “go to comfort foods.” Switched from coffee to hot tea which soothed his throat. Can not emphasize calorie intake importance enough. Get it any way you can. Radiation eats about 2000 cal each session so must get at least 2800 cal a day to maintain weight and nutrition. Eat anything you desire, when desire hits.
Shakes: using muscle builder shakes “Serious Mass” (you pick your own) with 1 cup Fairlife milk, 1 pint organic fruit, 2 containers “ BENECALORIE” (get this online) and ice. Gave him about 1800 calories and 90 grams protein. Drank 2 glasses in am, 1 at noon and 1 in evening. Put supplements in this as needed after chemo depleted his Mg, pho’s and calcium. When got to thick, let it sit overnight to thin down by next day. Note: IMPORTANT discuss with your dietician whatever supplements you pick to make sure it doesn’t counteract the chemo! Some shakes have additives that can counteract the chemo.
Hydration: He loves water so that helped and took ChristineB's advice on importance of fluids! He drank 3-4 liters a day. Washed out his sodium but that was easily replaced through salty foods, adding salt and hydration via IV.
Skin care: He tried several options for radiation burns but found Emu oil and radiation repair cream we got at Hopkins oncology center worked best for neck. Applies these 6-8 times a day. Use coconut oil over body immediately after showers daily. Used Silvadene cream (rx) in last 2 weeks with Emu oil and lotion.
Hydration/ Electrolytes: At week 2 started going to 2 hydration sessions right after radiation, even though was fully hydrated. By week 3 needed electrolytes replaced at these sessions. Continuing these for 2 weeks after treatment even though lates were all okay today. Started on Mg, phosphorus and Vit d supplements.
Medications: Already talked about gabepentin and fentanyl but need to mention again that we both believe the cannabis made all the difference. On 2 days he was so beat and didn’t use his pain was double bad and only improved once he used it again. Never got nauseated but always vaped immediately before and after chemo, in addition to the zofran they give. Steroids gave a big pump of energy. He had chemo on Fridays. Took steroids Saturday and Sunday then on mondays crashed! Told our NP and she gave half extra dose for Monday’s so his crash was not as bad. On last week, she gave him half dose to take each day through week 7 and 8. He decided not to take after last tx and has done fine but great to have that option if he needs an extra boost on a given day.
Refused to take any breakthrough oxy, he has never taken anything stronger that Tylenol in his life so the fentanyl has worked well. Keeps a steady level and compliments the cannabis. Not all doctors will do fentanyl as first line, talk to your doctors about your wishes for pain mgt.
Rest: went to bed between 6-8pm and got up at about 4am daily (started work at 6). Napped short periods often in the last week and now post treatment. Has most energy in first 6 hrs awake so tries to get tasks done during those hours. This is the one area he could have done better. He refused to allow us to hire help for pool or yard work so exerted to much energy some days which he paid for later with severe exhaustion.
Constipation... His was not significant but did deal with it. We used a food product called HyFiber which can get on Amazon. As a Director I had almost all my elderly patients on it. We choose this because it’s small amt, light lemon taste and has absolutely no drug interactions so knew it was safe. Our team liked it so much began suggesting it to others.
Anyone thinking of getting it should get it in bulk bottle because individual containers not necessary and costs to much.
and now post treatment. Has most energy in first 6 hrs awake so tries to get tasks done during those hours. This is the one area he could have done better. He refused to allow us to hire help for pool or yard work so exerted to much energy some days which he paid for later with severe exhaustion.
Exercise: most often this was in form of house/yard tasks. Walked our one pup every day for about 1/2 mile except for about 3 days when to exhausted. Opened our pool on week 5 of treatment which caused him to be grouchy and exhausted but felt good inside that he accomplished it. Important that they feel like they are the provider, have a purpose, are not helpless. On days to tired to do anything, I reminded him how much he had accomplished and that rest was okay that day.
Support: Yes, he had some radiation/chemo anger at times. I only had to walk out of house once. Always apologized later. I understand his mental anguish but I have feelings to so glad he did. Often woke up at 1am and we would have pillow talk. No sexual intimacy but we make sure we give each other affection. Just hold hands, a rub in the back, a hug or kiss. Affection is important for our souls and mental attitude. Allowed him to vent, cry, grieve laugh when needed. Tried to maintain as much norm as we could. To tired to keep 3 yo granddaughter like we usually do but face time often which always lifted his spirit. Made our visits shorter so they both stay connected. Can’t wait till she can come stay the night again! Hoping that’s in 2 weeks, fingers crossed.
We are only a few days post treatment, still exhausted. His hemoglobin is down to 8.2 and ANC is down to 2 but they feel this is his bottom and will begin to rebound since 2 weeks since last chemo. We know taste and saliva will take time. Important thing now is to stay the path, keep positive attitude and to continue to support him through the ups and downs.
If you read this entire post, I hope our journey gives you tips to make your journey doable. My hubby lost no weight. Started at 202lbs (about 15 lb over his base weight) and ended at 199. The joke now is that I made him fat and now I have to help him lose the weight. He has managed to miss no work, except planned Fridays when chemo and radiation take all day. Fridays are our “date days.” We both take off work that day and are actually our favorite days. We spend all day together and really enjoy that time. We have decided to continue this for the next month. We told our work that Fridays will need to continue for the next month.
The journey is not easy but it is doable and you may even be lucky enough to find some joy in it!
Best of luck to everyone!