5 year anniversary
Just wanted to post an update on my health. September 20th was 5 years since I finished my treatment for HPV 16 tonsil cancer. I was stage 1 on the revised staging system. Was considered stage 4 the year b4 my treatment. The staging was changed for HPV 16 cases only. Anyway, I have not been on the site much since they changed the layout of this site. I do not find it user friendly anymore.
My treatment consisted of 70 rads to the side with the tumor and 54 to the other side as a precautionare measure. In addition, had 3 high dose Cisplatin chemo treatments. Had lots of side effects during and after treatment in the first year. At this point the only issue I have is some cramping in the back of my neck from time to time. All my blood work also looks good. I am very fortunate to have only the one side effect.
Here's a big Hi to all the folks out there that I talked to during my treatment and to some that were doing there treatment at the same time I was doing mine.
God's speed to all that have done battle and any who are about to start. It's a tough battle but my results so far shows there is lots of hope for all of us. Keep up the good fight my fellow warriors.
God Bless,
Rick Smith
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Thanks. I hope you are doing OK. I know your probably battling all the side effects from treatment right now. For me losing my taste was the toughest part for me. It took several months for any taste to come back and about a year for it all to come back. Keep the faith. One of the best tasting foods early on for me was bacon. Just sip a tiny amount of water while chewing it to moisten it. You will learn sipping tiny amounts of water to moisten food really helps chew and swallow some foods once you are eating more. Be patient because the process of recovery is slow. Measure your progress in weeks not days. If your taste is not there I got a tip from a fellow warrior to drink lemonade. It was about 6 months after treatment was done when I started. Within a few weeks my taste started to improve dramatically. I would like to think the lemonade helped. Good luck on your recovery.
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Hi Rick, SO glad to read these types of updates, and glad you posted! My husband was diagnosed with Stage I base of tongue SCC HPV + 16 and started treatment September 5 (7 daily rads for 7 weeks similar to yours as everything was on left BOT and 2 small lymph nodes on same side) no surgery. As well as 7 weekly doses of Cisplatin. As of today he completed 4 of the 7 Cisplatin (with no nausea so far) and 16 of 33 (no longer 35) days of radiation. We knew his taste buds would go but he made it 3 entire weeks with most things tasting fine, other than bacon and hamburger tasting “off.” I found your comment about the bacon and using lemonade later after treatment helpful. He’s hanging in there, still driving (even today after chemo, he insisted although I go along). Naps are helpful but not everyday. It’s the “everything tastes like sh$&&!T now” that has been the hardest for him to handle, but he is. His rad onc dr explained they are able to spare his parotid glands (thankfully) and so far although he has a prescription for the magic mouthwash he hasn’t needed it. Baking soda and salt rinses have helped immensely. Thanks for sharing your journey, it helps those of us going through it.
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I completely lost my taste sometime around the third week. I could not tell a spoonful of salt from a spoonful of sugar. The last thing that will come back taste wise are sweets. I also used salt water mouth rinse several times per day. I never got any type of mouth sores. I'm one of the fortunate ones that have gotten 100 percent of my taste back. Losing your taste is very difficult and makes eating or drinking really tough. I did make it through treatment without a feeding tube. Lost about 40 pounds but was overweight at the beginning of treatment. Give my best to your husband and tell him to kick that cancers you know what!!
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Thanks Russ. Nice to hear from one of my fellow cancer warriors. It's nice to see you are still helping folks just starting the fight. How have you been doing since your last issues? Hope all has been well.
God Bless,
Rick
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Watch out for yeast infections on top of the sores. I believe Magic mouth wash has something in it to prevent yeast infections but it prevents sores from healing. Please confirm with doctor and do not listen to me except for to ask doctor questions. Nystatin and viscous lidocaine is what I did. Remember to shake the lidocaine bottle well as it will work amazing the 1st time then have no effect.
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LeeB3,
Thanks for the tips on the mucositis and possible yeast infection. Husband had low BP on Monday and dizzy, had to go to ER, was there 8 hrs and nobody addressed the Charley horse pain I told them he had since Sun night. We checked him out went home. Called his regular Oncologist yesterday AM (also something they didn’t do Mon also I wrote to his Oncologist Mon through his My Chart). SO talked to Oncologist’s nurse first thing yesterday morning told her he was limping on that leg, and that I THOUGHT he had a blood clot. She said take him to the main campus ER which we did yesterday and they did an ultrasound and YUP he has blood clot in back of right calf. Just somehow I knew but I should not have had to diagnose that. They’ve already got him on Lovenox shot yesterday and another this morning. He was admitted at 10:30 from the ER last night. So he’ll be having radiation this morning (would have been 20 of 33 but now I’d imagine they’ll tack on the 2 he missed at the end)? Also missed his weekly Cisplatin yesterday so not sure when they’ll schedule his next dose yet. Up until Sun night he was cruising right along (well as well as anyone can be on this journey). He’s only lost 10 lbs in 4-1/2 weeks of treatment. They’re switching him to oral Eliquis for blood clot to go home with, which looks like discharge will be tomorrow.
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Swoosh, thanks for the update.
These things can happen, little complications, big complications.
I was getting a high fever and felt really lousy at one point in my treatment, I was at the cancer center, and the cancer nurse in charge said the best place for you right now is in the hospital. They found i had an infected parotid gland and started me on antibiotics and I was in the hospital for 5 days and was transported by ambulance transfer out to the cancer center to continue my radiation treatments.
One other time I got a high fever at home for no reason but with OTC meds we brought it down, that time I called the doctor on call on the night shift and got instructions and he said if my fever didn't go down within a certain time call back right away. It gives you some comfort to know your care team is a phone call away.
They will get your husband through this, they are well prepared and schooled in changes that can occur and will be sure he gets his full treatment regimen. They tack em on the end, put em in the middle, whatever is best for your husband's case.
This procedure is a major assault on your body with radiation and intravenous chemicals that I wouldn't want to touch but it kills cancer and that's what you are after.
Hopefully, he will be turned loose and be back home tomorrow.
NEGU (Never Ever Give Up)
To you and your husband Wishing You the Best
Take care, God Bless
Russ
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