72 yr old facing TORS tonsilar procedure......HELP!!
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Thank you. I have relatives who swear by CBD and tried to get me to at least give it a try back 2 years ago when I had a torn Rotator Cuff. I tried two different brands and did not see any obvious improvement in my pain or range of motion. So, I stopped until that point in time when the industry is better regulated and held to be compliant with their claims. I have no doubt that there is a beneficial product out there but to what extent and which ones I'm not sure. Meanwhile, their prices are very high for a short tasty snack like a chewable gummy bear. HA HA
Take care................and stay tuned, as THE ADVENTURE CONTINUES..............Jim
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Jim,
Good to hear from you! Congrats on the TORS surgery as well. Sounds like you are doing well.
Re CBD, i'm a retired probation officer in washington state.
while i voted to legalize it here I haven’t used it in decades. I did however look at it to supplement my cancer treatment and found this:
The article states they are going to look at CBD as well but I haven't seen anything yet. Clearly more studies need to be done.
I read some time ago that a study showed that cbd works best when it's used with THC. i don't recall the ratios or the study. I choose not to use either CBD alone or CBD with THC.
And if one wanted to try just CBD you may not be getting what’s on the label.
In the past year or so, the washington state patrol bought several different brands from the stores and had them analyzed. Many did not match what was on the label. some were more and some were less. i don't know what if anything has been done about this here in the state or how other states manage this if they do. this applies to edibles.
as a side note, this is a common problem with supplements as well. consumerlab.com buys many different supplements and tests and posts the results. kind of like consumer reports for supplements, they also post research on the items which i find very helpful. clearly the referenced study for thc & cancer should be followed up with, to determine if it's an issue or not.
Found this, seems pretty balanced.
Take care,
Jim
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Jim,
I also had shoulder problems after TORS but didn't really pay any attention to it until after I finished Rads & Chemo. Started PT in March and have regained total range of motion (I wasn't able to lift my arm past horizontal) and a lot, but not all, of my strength.
I recently used a hedge trimmer over my head for a couple of hours to trim a tree with the only problem being my thumbs (arthritis). About 2 months ago I tried the same thing and it was a disaster. I still have some mild pain on and off in my mid back in addition to getting tired that my PT and I are working on.
My PT person is fantastic. She also puts up with my adding exercises and helps me fine tune them, form & weight amounts. My feeling is that I should be strengthening all my muscles, not just the one's the insurance company ok'd. Fortunately she's on board with that. She also explained and the surgeon confirmed that the accessory nerve was nicked. Part of my ear, chin & neck are numb - not a big deal. The PT and time address's that as well. The shoulder is a complicated joint with lots of muscles.
I remember starting to stretch my shoulder before I started PT and that was good. There are lots of stretches that use the wall and go slow!
I've not been doing my PT of late, I'm rebuilding my front stairs! Imagine that!
Take great care you are doing great,
Jim
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Newbie here, saw Jkin's initial request for info about TORS, thought I'd respond, but looks like many of you have already addressed this. Glad to see you had your procedure and that it went well, skin. About me (briefly): SCC, left tonsil, neck dissection and TORS 1/3/2022. Six weeks of radiation that ended 4/15/2022. PET scan 7/18, clean. Whew.
Food for thought: I had a dental clearance done, and began radiation with a metal crown on my left molar. Two weeks into radiation, the treatment was scattering into the side of my tongue--ended up with an ulcer the size of a postage stamp. Every moment was like a razor on my tongue. 5mg oxy/4 hours dulled the pain. The doctor had the rad team apply a wax to my molar every morning, but sheesh--should've done that from the outset, or should've insisted that I have the crown temporarily removed. What a mistake.
Second misfortune: A month ago, I began to feel a ragged, sharp pain not unlike the ulcer (which had by that time cleared up--took forever). Surgeon's exam yesterday revealed that a titanium surgical clip used during the January surgery had worked its way through the lining of my throat and was lodged there, scraping my throat and tongue. Acute pain. Him: Should take 2-3 months to dislodge. Come see me in a month, I'll see if I can anesthetize your tongue and tweeze it out.
And now I have to renegotiate the whole "no, I'm not an addict, I'm a cancer patient and this healing is taking a lot longer than I hoped it would" oxycodone situation.
Well, that's my story, twenty-five pounds lighter and a lot more in my head than I thought I'd ever be.
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Hi Jkin:
Just joined today, have read your posts with interest. Also did 30 days (no chemo, gratefully)--up to day 10, I thought, well, I've got this. Shortly after it got a little bit rocky, but I had a tongue ulcer, hope you don't have any complications. I had a great team, too, and I also found myself humbled by people in the waiting room who were clearly in a daily fight for their lives. I'm convinced cancer is a thief; takes something from everyone, sometimes takes everything.
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Welcome to the forum Dave, glad to have you. You have gone through your share of this evil cancer for sure. Good on the dental clearance sorry the metal crown gave you an issue. I would not have thought of it. And this surgical clip was it something they forgot to remove or was it supposed to stay where it was and migrated? Glad you are through the worst. I am with you on being "humbled by people in the waiting room who were clearly in a daily fight for their lives". I am through treatments and have some bad days Partially aging-related I think but mostly good days and anytime I start feeling down I need only to look around a bit and there are others who are dealing with so much. it seems you have lost 25 pounds and gained new insights into life.
Wishing You the Best
Take care, God Bless-Russ
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Hi Russ:
The surgical clips were not meant to dissolve; they were meant to calcify or move to digestion. The one that seems to impede my swallowing doesn't prevent my enjoyment of gin and tonics ("steal the last from me, gods, and I'll defy you"--or something in Greek).
It's interesting/distressing how cancer can set up camp in your head and be reluctant to leave. I've found myself apologizing often to people for the Cancer Me that the disease has made me. Neither my surgeon nor my radiation oncologist prepared me for the psychological wages that post-cancer would demand.
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Thanks, Russ, good to be here!
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Thanks Jim. Your description of your experience with TORS and shoulder problems could very well have been written by me about me. Nearly identical.
My Rad Oncol says not to worry about it until after IMRT. But I'd like to start the wall creep now and maybe some stretches. Can you share any YOUTUBE suggestions or other source for these?
Thanks so much for your reply. Very encouraging to know, as always, that none of "OUR" experiences are new and that many, many others have endured and can share.
Thanks again
Jim
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Jim,
Scroll down to the "Wall Walks". I did the one facing away from the wall. I took quite a while to get it up there, but just practice a few times a day, it's about a gentle stretch. After you can get to the top with your body against the wall you pull your hand away from the wall - yikes I know. My PT said just a little bit is fine, somedays you can do a little more than others. All is good.
I also did some of these: Neck stretches, Chin tuck & Jaw lowering. I may add some of the others to my current set.
I will tell you though, and we are all different, that I was so exhausted after rads finished in early Dec - I didn't start PT until March.
My cancer team did give me exercise to do during treatment and I tried to do some, but it wasn't until I got to PT that thinks really clicked.
Take good care, glad you found this site.
Jim
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Well Dave, first off soooo sorry you find yourself a member of this not-so-unique group. On the other hand very glad you did join us because as you have already discovered there is a world of information here and a lot of kind, thoughtful and unfortunately, very experienced souls here who will jump in to help whenever they can. I have been a member since 2009 after my first tonsilar cancer (left side) in 2007. During my first "rodeo" here I was very afraid but so many members here helped me and pointed me towards a ton of information that got me through those days of 35 rads and weekly Cisplatin. Fifteen years later I am still NED on the left side.
I wish I could say that 15 years later when a similar but new cancer popped up on my right side that it was easier to deal with. In many ways, yes it was but of course your mind loves to play with you and I had all the customary flashbacks that come from "knowing what lies ahead", especially in terms of the mask. I never had claustrophobia in my life until the 35 rads in the mask in 2007. But I've had it ever since. Praise the Lord for Ativan. Thankfully this time my rads are very short duration and only 30 and NO CHEMO.....wahooooo!!
You mentioned the platinum studs............my Rad Oncol was reviewing my first post-op CT and happily pointing out that the surgery had removed 100% of the SCC. I saw the two white dots and I asked him what they were and of course they are the line-up pins left by the Robot so that IMRT is precision guided. The ENT never mentioned that but now that I know it's purpose I'm very glad they are there. I hope I do not have problems with them moving.
More importantly I hope your issue is resolved shortly and that you continue to heal and work your way back to what we all refer to as "the new normal". You'll likely never be 100% back to where you were before this nightmare in terms of taste, saliva output, appetite, range of motion, etc....................but the great news is very shortly, if not already you will discover that this" new you" is someone you can live with and appreciate and keep on a keepin on. I thought I had that down for 15 years but then...........another nightmare pops up. So, I'm having to retrain my brain and start getting acquainted with this latest rendition of "normal".
I hope you do well my friend. God Bless
Jim
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Hey Jim: Hope you're having a good day. Tough news that you first had cancer in 2007; that predates (as you know) the less-invasive TORS procedure, which my surgeon told me really became available around 2017-2018. I'm told that prior to transoral, getting to a tonsillectomy was a real bitter chore. Spoiler alert for those who are about to have neck cancer surgery--don't search out the Youtube videos. Also, instruct your surgeon or nurse not to "proudly advertise" the DaVinci once you're in the very well-lit surgery room just prior to getting the IV(!!)
I was well medicated after surgery (gabapentin/celecoxib/oxycodone), and was sleepy, but was able to work from home (second spoiler: only give gabapentin a week or so trial: Wikipedia sourced says only 30-40% of people respond to it, and I can state unambiguously that it didn't work for me). Happy for those it helps, but I think gabapentin is worthless.
I didn't mind "the mask" too much. I managed to get in some Headspace meditation sessions beforehand, so I kind of centered mentally as the lead pencils danced across my face. I also wrote radiation haiku for my radiation oncologist (more later) to try to keep things light. I stopped being cute in week three. Re mask: I asked the tech at the outset if I got to keep mine; I'm a historian, and thought well, what the heck. On day 30 it was The Last Thing On My Mind.
My surgical clips are titanium, so non-ferrous, and so not a problem for MRIs should that become necessary. I didn't have guide-points placed for the radiation, which I understand is a relatively new improvement. Having said that, I thought that the clips to prevent bleeding would dissolve; apparently not. The one clip I have in my throat is protruding and causing pain. The surgeon said--raise your hand if you've had to explain/justify your pain level beyond the simple "1-10" question--"exactly how much pain are you in?" I meant to ask him how much pain he thought he'd be in if he swallowed a staple, but was too stunned by the observation that there was one there in the first place that I just deer-headlighted. "It wakes me up. It hurts." (Dignity is compromised when you have to choose between moderate (5-6) pain and pleading for medication).
I also hope the other loose pins my neck don't migrate. It's a trip learning that there's a small splinter of metal lodged in your throat--do you eat bread trying to dislodge it, or do you not antagonize it by drinking more Boost drinks? ;-)
I'm very interested in the experience of others with respect to chewing, swallowing, and taste. I'm almost four months out from radiation (4/15/22) and I still don't sense much WRT taste. Spicy is definitely out. I have sweet and salty, but increments seem lost (for now).
What a great, compassionate community. I resisted joining an online group because I told my wife "I want to put this in my rearview as soon as possible, and not talk about it." Clearly it's going to be my passenger for longer than I'd expected.
Dave
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Dave, your story is unfortunately too, too common but we all get through it as you are proving as well. It all comes back to what I have said no telling how many times, that you have to look for that "new normal" and once you find it lock on and embrace it. In my case I never thought I'd have to do it again but surprisingly it's getting easier already. My TORS was 5/26 and as of today I have had 14 IMRT's. My toughest healing issues are with the Radical Neck Dissection (23 staples). I took a month for my voice to get back to something better than Elmer Fudd. And swallowing is still a problem as my Vallecula just seems to take forever to get over the trauma it went through. But my Rad Oncol says I'm doing great considering the residual damage from IMRT and CHEMO back in 2007. So, with that knowledge, the Green Whining Light is out. No more.
Hang in there Brother. I promise you, you and your new normal will prevail.
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Quick update.........I tried the "wall walks" and they seem to be taking me in the right direction. As a twist, I tried them in the shower with hot water cascading down that arm, shoulder and my back.............that seemed to really relax things a bit. Thanks again.
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