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Hubby finished tx like a champ! #198397
05-24-2019 07:50 PM
05-24-2019 07:50 PM
Joined: Mar 2019
Posts: 27
Baltimore, Md
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Judy210 Offline OP
Contributing Member (25+ posts)
Judy210  Offline OP
Contributing Member (25+ posts)
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Joined: Mar 2019
Posts: 27
Baltimore, Md
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!


Wife and cheerleader. Right sided BOT dx 2/25, surgery 3/7 for tumor removal (clean margins) 2 lymph nodes 1 pos for ECE (ugh), pT2N1M0 HPV POSITIVE (one small blessing in this nightmare), Stage changed to Stage 1 due to diffuse and large HPV status. tx plan 33 radiation, 5 cisplatin chemo to begin 4/12.
Re: Hubby finished tx like a champ! [Re: Judy210] #198401
05-25-2019 09:01 PM
05-25-2019 09:01 PM
Joined: Jun 2007
Posts: 10,318
PA
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ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

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Joined: Jun 2007
Posts: 10,318
PA
Thank you very, very much, Judy!!!! Congrats to you and your husband for successfully completing treatments!!!! Your post will definitely give others hope! Every OC patient can do this!!!

Your husband is so very fortunate to have had you by his side not only as his caregiver, also as his confidant and biggest cheerleader!!! Its rare to see the teamwork with both the patient and caregiver so motivated, involved and compliant. You both went above and beyond with everything which attributed to your husband doing so well.

I did read the entire post (as I do every post) and found your attention to detail was one of the biggest influencers that helped your husband do so well. This is a great post to read for tons of helpful info, logically broken down into sections for each area. Every single part that needed attention during rads was taken care of which is NOT an easy accomplishment. I especially liked to see the daily intake was such a big focus for you both. Eating when you have no sense of taste can be sooo difficult !!! Yet, your husband overcame it and took in well about the daily minimums with both hydration and calories. I tend to nag people about this. The hope others will get from reading your post, could be what it takes to get more patients onboard with how vitally important intake during rads can be.

Thank you again for a great post!!! I know this will help a great number of others.Now, let the healing begin!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: Hubby finished tx like a champ! [Re: ChristineB] #198411
05-26-2019 06:30 PM
05-26-2019 06:30 PM
Joined: Mar 2019
Posts: 27
Baltimore, Md
J
Judy210 Offline OP
Contributing Member (25+ posts)
Judy210  Offline OP
Contributing Member (25+ posts)
J

Joined: Mar 2019
Posts: 27
Baltimore, Md
Thanks Christine. Except I realized I mis spelled your name and gave you wrong initial! Sorry about that! You were such a strong influence with your wealth of information and support. I did leave out one issue, 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.


Wife and cheerleader. Right sided BOT dx 2/25, surgery 3/7 for tumor removal (clean margins) 2 lymph nodes 1 pos for ECE (ugh), pT2N1M0 HPV POSITIVE (one small blessing in this nightmare), Stage changed to Stage 1 due to diffuse and large HPV status. tx plan 33 radiation, 5 cisplatin chemo to begin 4/12.
Re: Hubby finished tx like a champ! [Re: Judy210] #198413
05-26-2019 09:24 PM
05-26-2019 09:24 PM
Joined: Jun 2013
Posts: 326
alabama
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KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
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Joined: Jun 2013
Posts: 326
alabama
I was wondering when I'd given such wise advice ... LOL. Hydration is key, but I don't usually remember to tell folks that. laugh

KristenS


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Hubby finished tx like a champ! [Re: Judy210] #198414
05-26-2019 09:44 PM
05-26-2019 09:44 PM
Joined: Jun 2007
Posts: 10,318
PA
C
ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,318
PA
I added the constipation info to your post.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: Hubby finished tx like a champ! [Re: Judy210] #198670
07-09-2019 02:47 PM
07-09-2019 02:47 PM
Joined: Jul 2019
Posts: 4
E
EBH Offline
Member
EBH  Offline
Member
E

Joined: Jul 2019
Posts: 4
Thank you for your post Judy. It was so encouraging to hear how you and your husband got through everything. I too am a caregiver. My husband (age 49) was diagnosed with HPV 16 cancer on his tonsil, soft palate and a few "floaters" in his lymph nodes. He was diagnosed as stage 2 about 2 1/2 weeks ago. We begin radiation and chemo this coming Friday, July 12. Thankfully, our two children are away at summer camp for the next 10 days, so they are not having to see/feel all of the emotions leading up to his treatment. My husband's chemo will be three times total every three weeks. Radiation is scheduled every weekday for the next 7 weeks. Your post was so helpful since we are just beginning this scary process. In addition to fighting the cancer, we are both worried about the pain and him having to get feeding tube. We just don't know what to expect. I have emailed myself a copy of your post so I can refer to it throughout his treatment. I am so happy that you and your husband have this all behind you...and to all of us beginning this journey, you and your husband are an inspiration! Thank you!


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