What to expect now
Comments
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InfoBeagleDad said:Your journey
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
I was out for a awhile from my tonsil removal surgery, then for the radiation treatments, then for the recovery. I guess you could work during radiation, but I am a mailman and it would have been to tough to get the treat then go to work. I was also tired after the treatments every day, so resting was better for me. Recovery time from radiation varies for everyone, but you will need at least a few months for recovery. I have been back to work only a few weeks, but I feel very drained after working. It takes a long time to get your immune system back to normal, so be ready for that. Also takes time for taste to come back, so also be prepared for that too. And also dry mouth, so keep water handy.It is a long journey, but keep a positive attitude and you can get through. I was very worried but found a lot of inspiration and help from people on this site. Take Care, Dave
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New staging system 2018BeagleDad said:Your journey
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
BeagleDad I noticed you said the doctor told you your cancer was stage 3. The staging system was updated in 2018 for HPV related head & neck cancer. If your cancer is HPV related the staging will be different. If your doctor was staging yours as a non HPV cancer your staging will most likely be changed to stage 1 based on the cancer only being on one side. One of my doctors new about the new staging system and one did not. I had to inform them. My treatment was in 2018 when the new staging system came out. The staging system was changed because the cure rates for HPV cancers is much higher than SCC cancer. Both my doctors told me cure rates for HPV cancers was 95%. You may want to ask your doctor if he or she is up to date on the new staging system. I'm kind of suprised he staged your cancer without knowing if it was HPV related. My cancer was HPV 16 and the primary was the right tonsil and 4 lymph nodes same side. Left side was clear. In the old staging system where all cancers were on the same staging chart I would of been stage 4, but with the new staging I was a stage 1. For your info, I had no surgery. My treatment was 35 IMRT radiation doses Monday thru Friday for 7 weeks and 3 high dose Cisplatin chemo treatments in weeks 1, 4 & 7. I had the maximum of 70 greys of radiation on the primary side and as a precautionary measure 54 greys on the non cancer left side. Hope this helps. Just so you know, I'm kind of a baby when it comes to being sick, if I can do this anybody can. I was fortunate and made it thru treatment in pretty good shape. I suggest you stay off Mr. Google and use this forum to learn everything you can about what we all have done and been thru. You can do this!! God Bless.
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3 month checkupDave705 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.
Just had my 3 month checkup with my radiation doctor. Everything looks good That he could see with the scope. Just some swollen scar tissue yet, but that I can handle. Taste slowly coming back except for meat, so just waiting that out. 3 months then off to my ENT for another checkup. Seems like yesterday I was just starting treatment, so anyone going through it, hang in there, it will get better.
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Dave GladDave705 said:3 month checkup
Just had my 3 month checkup with my radiation doctor. Everything looks good That he could see with the scope. Just some swollen scar tissue yet, but that I can handle. Taste slowly coming back except for meat, so just waiting that out. 3 months then off to my ENT for another checkup. Seems like yesterday I was just starting treatment, so anyone going through it, hang in there, it will get better.
Your checkup turned out well and everything is good. It is always good to get the checkup over with an all-clear no problems now you can breathe easier for a while. Take Care-God Bless-Russ
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Thankswbcgaruss said:Dave Glad
Your checkup turned out well and everything is good. It is always good to get the checkup over with an all-clear no problems now you can breathe easier for a while. Take Care-God Bless-Russ
Thanks So Much Russ for your kind words. Dave
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6 month update
Just saw my ent last week, the guy who started this whole fiasco by removing one lymph node. Everything still looks great. Taste all but back to normal. This last year has been a trying time, but anyone who has to go through this type of cancer, You Can Do It. It will seem like a long challange, but the end result will be worth it. Thanks to all who have given me support on here this past year. Will have a chest X-ray in September, but at this point I have nothing to feel but all positiveness.
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Dave,Dave705 said:Thanks
Thank You So Much Russ!
This is ALWAYS great news to hear!
It sounds to me like you and your wife should have a nice celebratory dinner. If I recall correctly, you were seafood fans!
Thanks for sharing the uplifting news - it makes my day!
MG (aka Curt)
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Thanks Curtmotorcycleguy said:Dave,
This is ALWAYS great news to hear!
It sounds to me like you and your wife should have a nice celebratory dinner. If I recall correctly, you were seafood fans!
Thanks for sharing the uplifting news - it makes my day!
MG (aka Curt)
I am glad I made your day. You have been a huge help to me this past year. I can't thank you enough!
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