What to expect now
Comments
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Checking in
been 5 weeks since the end of my radiation treatments. Talked to Oncologist today. He is putting me back on oxycodone for the mouth pain I am still suffering from while chewing. Swallowing no problem, but still tough to eat. No taste buds, but right now I am ready to chew even bland food. Thanks for all the wishes from everyone. Will keep you posted as recovery pushes on. Stay safe to all
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Dave,Dave705 said:Checking in
been 5 weeks since the end of my radiation treatments. Talked to Oncologist today. He is putting me back on oxycodone for the mouth pain I am still suffering from while chewing. Swallowing no problem, but still tough to eat. No taste buds, but right now I am ready to chew even bland food. Thanks for all the wishes from everyone. Will keep you posted as recovery pushes on. Stay safe to all
I'm sorry to hear it's been a challenge. I can remember a time when eating a piece of pizza seemed like an impossible dream, because of mouth pain, and lack of saliva. But, it will all come back (including the taste). It just seems to take a long time.
Keep trying new foods, as you'll find things you like with time!
Hang in there...
mg
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Mouth painmotorcycleguy said:Dave,
I'm sorry to hear it's been a challenge. I can remember a time when eating a piece of pizza seemed like an impossible dream, because of mouth pain, and lack of saliva. But, it will all come back (including the taste). It just seems to take a long time.
Keep trying new foods, as you'll find things you like with time!
Hang in there...
mg
Hang in there Dave it will get better. Took me a little while to get taste back. Try eating soft foods, gravy and sauces if you can. Keep us posted.
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Dave Hope YouDave705 said:Seeing oncologist today
Today is my first face to face meeting with oncologist since treatment ended. Will probably get some bloodwork and setup for pet scan, but just guessing now. Hopefully will get some good news.
Do get Blessings of good news. When you get a scan and get the results from that and it's NED that is the best news. I find from my experience and reading other folks stories on here that the treatment is usually sufficient to get rid of your cancer but there is always that small doubt and concern till you finally get the scan results-Take Care-God Bless
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No news
Today's checkup just a routine 2 month checkup. Next month on schedule for pet scan, bloodwork, and the good old nasal scope. He did examine my mouth said everything looks good, some scar tissue yet on right side, but everything else normal. Have to wait another month for hopefully good news.
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Hi Dave! I am also a right
Hi Dave! I am also a right tonsil cancer survivor. I am assuming you were HPV positive. My only symptom was a tiny pea size lump under my jawbone. From there I had a lymphodectomy for diagnosis, a tongue resection and four tonsils removed to discover the primary cancer location. Then treatment of 33 rounds of radiation with 3 massive doses planned (I could only endure 2) of Cisplatin Chemotherapy. It was BRUTAL!!! Bottom line, I am now leading a fairly normal life three years later. My most troublesome side effect is dysphasia due to the lack of salivia and muscles for swallowing not working as well due to the radiation. I have an awesome life full of fun and adventure. If I didn't tell people, (and I usually dont) no one would even guess that I had ever been sick. I am excited to hear of your progress . Be sure to see a speech pathologist to guide you through necessary throat exercises for you to do daily forever for the health of your ability to swallow safely! Blessings, Nancy
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Thanks and Congratulationsnancytc said:Hi Dave! I am also a right
Hi Dave! I am also a right tonsil cancer survivor. I am assuming you were HPV positive. My only symptom was a tiny pea size lump under my jawbone. From there I had a lymphodectomy for diagnosis, a tongue resection and four tonsils removed to discover the primary cancer location. Then treatment of 33 rounds of radiation with 3 massive doses planned (I could only endure 2) of Cisplatin Chemotherapy. It was BRUTAL!!! Bottom line, I am now leading a fairly normal life three years later. My most troublesome side effect is dysphasia due to the lack of salivia and muscles for swallowing not working as well due to the radiation. I have an awesome life full of fun and adventure. If I didn't tell people, (and I usually dont) no one would even guess that I had ever been sick. I am excited to hear of your progress . Be sure to see a speech pathologist to guide you through necessary throat exercises for you to do daily forever for the health of your ability to swallow safely! Blessings, Nancy
Thanks For the advice and glad to hear how well you are doing. I have been practicing my stretching exercises lately. It was hard to do at first with the muscle pain. But now everything is better. Thanks Again for your kind words. Dave
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Pet scan on monday
Trying to stay relaxed as Monday the 14th is my Pet scan to hopefully see that everything is clear. I can't Thank everyone on here enough for all their support and guidance through these last 7 months. Special shoutout to motorcycle guy who has been keeping tabs on me every week. Hope I can share nothing but good news with everyone soon.
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Dave,Dave705 said:Pet scan on monday
Trying to stay relaxed as Monday the 14th is my Pet scan to hopefully see that everything is clear. I can't Thank everyone on here enough for all their support and guidance through these last 7 months. Special shoutout to motorcycle guy who has been keeping tabs on me every week. Hope I can share nothing but good news with everyone soon.
I've enjoyed getting to know you, and staying informed of your recovery process.
I have a pretty strong feeling that your PET Scan will be AOK!
Thanks for keeping in touch,
mg
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Hello!Dave705 said:Pet scan on monday
Trying to stay relaxed as Monday the 14th is my Pet scan to hopefully see that everything is clear. I can't Thank everyone on here enough for all their support and guidance through these last 7 months. Special shoutout to motorcycle guy who has been keeping tabs on me every week. Hope I can share nothing but good news with everyone soon.
Hi Dave, you probably don’t have any results yet, but praying for great news for you! Check back in when you know!!
Elizabeth
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All clearPipLily said:Hello!
Hi Dave, you probably don’t have any results yet, but praying for great news for you! Check back in when you know!!
Elizabeth
Got the results, All clear. Everything normal! Feels like the world has been lifted off of me. Still have to wait for taste buds and have a little swelling in right neck muscle, which they say is normal. So I think I can handle those minimal problems. Hope your husbands recovery is going well!
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Dave,
Like I mentioned in the e-mail - GREAT NEWS!
I'm putting $20 on the fact that your taste comes back, and you lead the family in eating - at Thanksgiving!!
You're well on your way to "back to normal"!
Contratulations,
mg
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Great newsDave705 said:All clear
Got the results, All clear. Everything normal! Feels like the world has been lifted off of me. Still have to wait for taste buds and have a little swelling in right neck muscle, which they say is normal. So I think I can handle those minimal problems. Hope your husbands recovery is going well!
Nothing better than NED-Take Care-God Bless-Russ
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705motorcycleguy said:Dave,
Like I mentioned in the e-mail - GREAT NEWS!
I'm putting $20 on the fact that your taste comes back, and you lead the family in eating - at Thanksgiving!!
You're well on your way to "back to normal"!
Contratulations,
mg
Congrats on the all clear, hoping you regain the taste buds soon.
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Back to work
After 7 months of surgery, and radiation and recovery, it's back to work on Monday. Taste buds now about 50 percent, so things starting to greatly improve. Anyone who struggles after radiation, just hang in there. It will get better! Thanks to all the get well wishers on here, who have been so concerned these last months. I appreciated every bit of encouragement and help I have gotten.
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Your journeyDave705 said:Back to work
After 7 months of surgery, and radiation and recovery, it's back to work on Monday. Taste buds now about 50 percent, so things starting to greatly improve. Anyone who struggles after radiation, just hang in there. It will get better! Thanks to all the get well wishers on here, who have been so concerned these last months. I appreciated every bit of encouragement and help I have gotten.
First off, thank you for replying to my first thread. I JUST got preliminary diagnosis and awaiting first biopsy findings ... fingers and toes it is hpv-related.
I have read several of your posts here and find them helpful. We (Drs & me) havenot yet determined whether ornot I wil lhave to go under the knife or address with tx only. It is S3 since it has expanded into my lymph node.
I am SO not looking forward to all this. It is like looking upat the sky and seeing clear and blue skies but seeing ont he weather channel that a hurricane is approaching. Right now I vacilate between "being normal" and upsetness at the hand I have been dealt. Certainly I take solace in yours and other threads for the long term. I have to admit I am suffereing from some self pity now but also know that I am "lucky" (HA!) givent hat I have recently lost 2 friends to incurable cancers.
Kinda hard to feel lucky, I am sure you and others understand.
I have always been the positive guy in the room ... silver linings everywhere in my life. But I have to say, I can feel twinges of saddness and tearing up as I write this and read some of these posts.
Damn .... I love to eat and drink. And right now I am being advised (here) to fatten up all I can but I have completely lost my appetite.... and then I read in this thread how important it is to go eat and enjoy now because of how much I will miss those baisics in my life in such a short time frame.
I am seriously going to need y'all's help here.
You mentioned not getting back to work for 7 months. Is THAT normal???? I work from home (I own a computer repair business back in Arizona) but I deliver pizzas here in northwest Arkansas at night. I expect to be out of work during tx ... should I plan on being out of work at the pizza place for months not weeks???? If so, why? (I am not challenging your advice, just trying to find out what issues will I have to deal with that keep me from working) I have a lot of support for the computer business and can be away for a short period while I rest and all ..but the pizza biz is important income to my wife and me.
Thank you.
Don - beagledad
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