De-intensification Clinical Trial
Comments
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Hello All - time for an update.
Scan - there was one spot that lit up a little but it was undefined. My surgeon said he's not worried about it - we'll watch it. Here's the exact verbiage...
Mild residual ill-defined uptake along the anterior left sternocleidomastoid which could be post treatment change. There was a FDG avid lymph node in this area on the prior study. Recommend attention on follow-up studies. Otherwise complete metabolic response to treatment.
Rash - sigh. So, clobetasol for now and it definitely helps. The mediport is now scheduled to come out on Jan 8, good because there is some concern my rash is a reaction to it. About a week after that if it is still acting up the derm dude wants to try methotrexate shots. So, still itchy, but not as much. Arrgghh.
Swallowing - better and better each day. Muscle pain and difficulties chewing but small bites with lots of water work. Got to build up chewing muscle strength. Taste is very vivid! Almost too much! I'm also still very dry... parched most of the time. Hoping this improves eventually. Still, I'm grateful I'm not aspirating and can eat. I'll gladly take "with difficulty" over "not at all" for sure.
So, still not sure completely how to feel over the scan results. Like I mentioned, the surgeon has no worries so I'm relieved about that. I will see the radiation doc on the 28th and I'll get his take on it all.
Till next time, Merry Christmas everyone! We appreciate you all!
Peace, Smitty
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Congratulations Smitty!
I say that because it sounds like your surgeon thinks you had a good report and I don't think you can give too much credit to anything that can be perceived as good new, particularly at this time of the year.
My raddoc has been watching a slightly swollen lymph node on approximately the same spot on the left side of my neck as the lymph node that was cancerous on the right side of my neck in 2020. They've been watching it for as long as eight months as far as I know.
I know how you feel about being parched all the time. I completed radiation therapy in September of 2021 and am now accustomed to carrying a "water" bottle with me where ever I go. My water bottle is typically full of Crystal Light Sweet Tea (often combined with something like Cherry Whey powder to ensure variety of (hopefully beneficial) taste.
A friend of mine at Toastmasters Internation likes to say, "This too shall pass" and I'm confident his favorite phrase can be applied to the nuisance of you rash and swallowing problems. You're on the right track when you say things like, "I'm grateful I'm not aspirating and can eat. I'll gladly take "with difficulty" over "not at all" for sure." This too shall pass.
I'm confident you'll get good news from the raddoc on the 28th, otherwise, I suspect they would have scheduled you to see them sooner.
I wish you and all of those who read these pages the merriest of Christmases and a new year that far eceeds your expectations, particularly where health is concerned. As Tiny Tim said,
"God bless us everyone."
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Hang in there Smitty. I am roughly at the same stage of recovery as you are and I admire your courage. My first post-treatment scan is in February. I have witnessed the truth in the phrase "this too shall pass". That which doesn't kill us makes us stronger with the passage of time. I wish you Merry Christmas and Happy New Year with continued improvement!
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Hello Smitty and thanks for another update.
I have read on here many times that when people get their first scan after treatment the doctors see something they are not quite sure of with different names and in your case called residual, ill-defined, etc.
When these are seen they later on turn out to be nothing or on a scan down the road it is gone and not seen.
People say these are referred to as "false positives" and turn out to be nothing except some still cookin area from radiation or a cause that is unknown and I am figuring that is what the doctors are seeing in your case but I understand it is concerning. ( Pray On It )
I have; also seen on here that people say they should not give PET scans too early and wait at least 6 months for a PET scan because of the possibility of "false positives".
It seems the way this rash is hanging on it may well be the mediport causing it.
Other than that it sounds like a normal H&N slow recovery over time as far as taste and saliva and eating and swallowing. The fact that you are swallowing now though with some difficulty to me is a very good sign and it will just keep getting better. As far as taste and saliva and maybe a few other things it will just take time to see how much comes back, hopefully, 100% but generally once going through this treatment I have found nobody gets away free there is always some little thing that is just different from before and people learn to deal with it.
Afterwhile down the road on this exciting journey, you will figure out what is your new normal or as it is stated on here sometimes your new abinormal.
Christmas Blessings to you also Smitty
Take care, God Bless
Russ
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Happy New Year everyone! An update...
Spit - none yet, maybe a little slimy muck occasionally.
Rash - almost all gone, clobetasol finally knocked it down pretty much.
Eating - not so good. My mouth is sore where it feels like my gums are being pulled away from my teeth, and the bottom of my tongue hurts. This has been this way more or less since the surgery, and the doc says it's normal and should get better. It has kept me from eating although it does seem to be improving a tiny bit again.
Guts - I've been getting terrific stomach pains, exactly like when I was putting too much in via the feeding tube. Not sure what's going on but it makes me very apprehensive to dump the fake food in. I've cut it down to even smaller amounts and spread it out over longer times, but I keep losing weight so I'm not sure what to do. The stomach pain when it occurs is terrific and not tolerable. On top of that, I'm struggling with being plugged up. Arggh. We'll see what the speech therapist says next week.
In happier news, I'm getting the Medi-port out on Monday!
Till next time, prayers for a truly happy new year for all of you!
Peace, Smitty
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Happy New Year to you Smitty and praying for much recovery for you in the New Year. Glad to hear the mediport is coming out, that is a step forward. I am 2 months post treatment and share your eating experience even though I didn't have a feeding tube: slimey Superfund-site mouth, no appetite, and living on 2 very high calorie Boosts and half a gallon of whole milk per day plus whatever else I can choke down :-) If you can get the very high calorie Boosts down (8 oz) they should help weight because they are 500 calories each. God bless and keep the faith.
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Smitty, I will second that, Happy New Year to everyone.
Sorry to hear you are still in the rough part of recovery.
Sounds like there a a few issues that need to be worked out yet but basically a general recovery from treatment. It sounds like you are on course and doing everything you can so hang in there. This is when patience is needed and it sometimes is not easy. We are done with treatment and thinking of other illnesses in our mind it is telling us according to other illnesses and treatment we have had in our life, this treatment is over and things should be resolved and we should feel better now. But our body that received the cancer treatment regimen is telling the mind "Man I don't know what you're thinkin but we're still recovering down here and have a long way to go". It can be frustrating. H&N cancer treatment recovery is in weeks and months not days and weeks like a cold or virus. So hang in there and be patient it will come. A good estimate is 8 months to a year for recovery. I remember it was a year or a little over till I could finally say I am back to as close to normal as I'm gonna get considering we all seem to have some sort of baggage of post-treatment we can't seem to get rid of such as dry mouth or some other treatment leftover. Before my treatment ever started my radiation nurse told me "You might as well figger a year till you go through treatment and recover", I had the 35 rads and 3 chemo treatments plus some extra preliminary chemo. She was right on with her prediction, I guess she should know since she worked at this for a living.
And hey there Ed happy New Year to you also and just keep working with your recovery as you have and the months will roll by and soon you will be past all this. Ed, you got it right on just keep pushing enough calories through each day for now to maintain your weight. Getting something in helps you in recovery also, the more you can eat the better off you are right now because your body needs all it can get to repair itself.
Also Ed might I recommend you take a look at the Superthread at the top of the H&N page, it is loaded with info and links to help in treatment and recovery.
So, Smitty, Ed, brighter days ahead.
Wishing You The Best
Take Care, God Bless
NEGU (Never Ever Give Up)
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Hello again everyone and thanks for the messages. Finally an overdue update as my Sweetheart has been in the hospital herself for a week with flu-related breathing difficulties. Hopefully, she's home today!
Eating - so, the speech therapist decided 2 weeks ago that I am one of those people that just need to quit using the feeding tube and eat everything by mouth. I have lost 50 pounds and she said no more. This sounds great but my mouth is so sore it's very difficult. Any movement of my head or mouth pulls my gums like they are being ripped away from my lower teeth on the neck dissection side. She called it "tethering", where the scar tissue on the side of my neck won't give. Also, my tongue hurts bad when I use it and finally, I can not really open my mouth very far without pain. So, I'm doing the best I can, keeping up with the exercises and mixing easy foods with gross Ensures to try to continuously eat and drink stuff. Nothing is pleasurable about it all and sometimes I get terrific belly pain when I eat. Tums seems to help. I have to call the therapist tomorrow and get chewed out again as I think I have lost a few more pounds, probably partly from walking a mile every day at the hospital to see my honey. The Hershey Med Center is so huge. Arrgghh. The surgeon basically says suck it up and eat. The good thing is that I can swallow without aspirating and if I can endure it I can eat most anything in small bites. Still no real spit but everything washes down ok. So there's that.
Rash - is back. It had been doing well but now using the clobetasol again. Damn it.
So, life is hard but soldiering on. I guess it really is all about time and patience.
Peace,
Smitty
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Hello, Smitty, good to hear from you again.
Sorry, your sweetheart is in the hospital and yes we hope she gets home today-prayers for both of you.
But so sorry you are in a situation of needing to get off the tube and just eat and it is so difficult and painful. This is the first time I can say I heard the term and condition of tethering with an H&N patient. I would have thought possibly they would possibly push you to split your dependence between the tube and eating. But I defer to the pros, if your speech therapist has identified your condition in this way then as you say soldier on and do the best you can, and hopefully at some point here you will reach a breakpoint where it all starts getting better. The good thing is your feeding tube is there just in case. Also stomach pains and the rash returning, you have your hands full. Sometimes going through H&N treatment is just that and it is all you can do, your time is filled with it. I remember a number of years ago reading a thread on here of someone talking of their full-time job and going through H&N treatment and someone commented that the treatment is now your full-time job. Some, just a few have kept working through this but I know in my case there was no way I could have.
I know what you mean about the size of Hershey Medical I was there a couple of times, once for 36 days and it is a large facility. Certainly not the biggest in relation to what is considered the largest of hospitals but it is big to me and you. Here is a link to some stats on it, it does have 12,000+ total staff.
Smitty, you are having one of the toughest times I can remember of but trust me you will still get through this and things will start heading towards the better side soon. Hopefully, you and your sweetheart will be back in good shape and enjoying life again. Here is wishing you better days ahead and God's Blessings be with you.
Wishing You The Best-Take Care, God Bless
Russ
Sometimes you just gotta hold on till the next day, hour, minute...
"I Held On"
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Hello All - thanks for the always great feedback... an update:
- Yesterday was a happy day - feeding tube OUT!!! Since it was put in 6/23/23 I've lost over 50 pounds but have held steady for the last 6 weeks without using it, so the doc ordered it removed. I had to go under for the procedure because the doc preferred that to just yanking it out. Something about a small risk of it breaking etc. if it just gets pulled out. Anyway, hopefully the last time under the knife for a long time.
- Still painful to eat, first bite syndrome seems to be getting a tiny bit better, gums and tongue as well. Also painful to open my mouth very far, in fact I can't open it very far, it just won't go. I'm considering a Thera-bite machine but it's so painful to force my mouth open I'm not sure I could use it. Any feedback would be great. I have to smash everything flat or knife and fork it. The good part is that I can eat almost anything, and my saliva seems to be recovering a tiny bit. Of course my throat is a little sore now from the endoscopy related to pulling the tube (they cut it in the stomach and the piece inside comes back out the mouth). I guess it's normal and will calm down in a few days. Dentist visit next Monday so we'll see if she has any thoughts on the mouth pain. Overall, it really does seem better by an infinitesimal amount each day. Improvement at a snail's pace, but you know snails have been around a long time. If it works for them I guess I'll accept it will work for me.
- Rash is still rashy. I'm going to give it a few weeks to see if getting the feeding tube out makes a difference as there is some thinking that it's a reaction to it that's causing the rash. After that, back to the derm dude. Argh.
Anyway, progress is being made. And spring is coming. Till next update, keep well everyone and thank you all for the difference you've made in my journey. I appreciate you all!
Smitty
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Hello, Smitty, and thanks for stopping by and giving us an update.
I would say you are the first person I have known of to go under sedation and have a medical procedure to remove a feeding tube, usually, they just pull them out. I have had three of them and they were all removed by just pulling them out. That's ok if it was done that way as long as it was safely removed is all that matters. Possibly this doctor had a problem with some of them and wasn't taking any chances. So now you don't have your friend the dangler anymore, great.
OK, first off in the second part of your update, I believe you had surgery and that could be adding to your general overall pain in opening your mouth, the first bite pain, gums, etc. along with the other treatment you received. I had a neck dissection on the left side of my neck and since then I get what feels like a sore spot while chewing at my back molars on that side on my gum, and cheek area. It feels like when you get an ulcer in your mouth and every time I would be chewing it was sore and irritating. It may last several weeks or more then fade away. The first time this happened I got an appointment with my ENT to have it checked out because we H&N people are always wary of cancer now. He looked in my mouth and said there is no irritation showing, everything looks fine and normal and he could feel no abnormalities and any following scans have been clear. This was verified by a dentist appointment I had shortly after and my dentist agreed all the inside of my mouth tissue looks normal with no signs of any problems and he could neither feel anything out of the ordinary either. So what my ENT told me was that the operation I had probably affected nerves in the area so this area is signaling my brain from affected nerves it is sore when there is in fact nothing going on. I tell you this long drawn out story to say you may have some nerve effect going on and hopefully over time it will resolve itself for you or you can mention it to your doctor and see if they would be under the opinion if there is a possibility of a nerve effect going on here.
The good thing is you can eat almost anything again and you have adapted ways with your situation to do it. One thing for sure with this H&N stuff you have to be flexible and adaptable. Your saliva is improving, you think and your throat will definitely be sore from the procedure you had. I remember getting dilations and my throat was mildly sore for several days thereafter.
As far as a TheraBite goes I looked them up and they are still extremely expensive $624.00 on Amazon from Atos Medical. The price has always been prohibitive for many people and few insurance companies will cover this. It is also expensive in the situations that most people use them to get past post-treatment issues and then the lay in a drawer unused. I have no idea why the price to this day remains so high considering they are made of plastic and I assume are easily produced. You can find them cheaper on eBay new ans sometimes used. I have another solution if you would like to try is and it is much less expensive and I have found a lot of nurse navigators and speech therapists offer this to their patients because not everybody can afford a TheraBite. It is done using stacked wooden tongue depressors or wooden spoons like you would get with an ice cream cup and fitting them for your mouth opening for as far as you can open it and adding one more which starts increasing your mouth opening over time. You can probably get these locally at say a Walmart or a pharmacy or purchase them online from eBay, I just checked and you can get 100 for between $6.00 and $10.00 with free shipping. I am posting a 6-minute video below to explain how it's done...
TMJ Range of Motion using Bite Sticks
And here below I am posting one of his longer detailed videos (17 minutes) explaining TMJ (Temporo-Mandibular Joint) dysfunction...
I hope the removal of the feeding tube calms down the rash that has been plaguing you, I imagine you could be having a reaction to the material it was made of. So we are glad you are making progress and spring will surely liven things up and renew your spirit. Nothing better than seeing God's creation renew every spring with new life and great hopes.
I celebrate with you for the removal of the feeding tube and you improvements...
Wishing You the Best
Take care, God Bless
Russ
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