Oral Cancer
Comments
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Dear Wade1,
Sorry to hear about your chemo this week. The first time my husband had chemo (week 1) we packed lunch in a cooler (ham & cheese and buns and apple cider donuts). I remember he ate 2 sandwiches while he was “hooked up”. As the weeks went on he really didn’t feel like eating stuff that much. Fortunately I was only working part-time during his treatment (2 days/week) so I always had off on Mondays (lab and doctor days) and Tuesdays (chemo) so at least if he didn’t feel like driving I could. Our biggest problem was his blood sugar being “jacked” from the steroid days (he has Type II Diabetes). Also the blood clot he got in his right leg in week 5 (spent 2 days in ER and 2 more in hospital). For sure I was driving then. I have not read of anyone else on here with Diabetes going in and/or getting a blood clot. Although I didn’t search the board specifically. We go back this Mon for labs and to see his main Hematologist and Radiologist. Assuming everything is going as well as it can be. Were told he’d probably have his CT/PET in late February so praying for a clean scan. We always looked forward to the weekends for the 2 days off treatment so please rest up these next 2 days. Sending prayers your way.
Swoosh13
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Thank you Wade1,
No one told us ahead of time about the steroid raising his blood sugar. Eventually his endocrinologist added in an injectable insulin pen on the 4 days each week he was taking the steroid. By the time he was 2 weeks post treatment and had lost a total of 30 lbs, his blood sugar was normalized from having lost weight. He’s now regained about 20-25 of the 30 lbs and is no longer on the injectable insulin, his blood sugar is pretty stable.
We appreciate the prayers. I’d imagine they will be scoping him with a camera down his nose on Monday, he hasn’t had that done since b/4 his treatment started.
He had a bad sinus/ear infection last week probably picked up from Christmas with the grandkids but dr put him on the Z pack antibiotics and he felt so good today we went out for dinner tonight. He said everything he had tasted at least 60% or more. He thought the sinus/ear infection last week affected his taste a bit but it’s back to “normal” now. He really enjoyed dinner and I enjoy seeing him that way.
Hang in there and prayers your way also.
Swoosh13
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Update:
I'm into week 4 of treatment. Still have about 19 radiation treatments and 3 chemo sessions.
Not be talk or type too much. After week 2 my nausea is constant. I'm leaving the hospital today with another nausea med and a stronger Percocet.
My mouth is full of sores.
I'm Struggling with the constant tiredness, aches and nausea. I look at it with positivity. I figure that if my body is responding like it is I would think the chemo is working.
Seems like I have a good palliative care team also. Not any complaints about the staff and doctors. I've seen 9 different doctors now. They have a doctor for about everything it seems. Which is a good thing I would think .
Later for now.
God bless you all.
Wade.
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Wade, sorry you are having a tough time right now. Unfortunately, it is part and parcel to this cancer treatment. I am glad you are surrounded it seems by care members, doctors, and others. Just work with them and the meds you get and get through this treatment. As you have found out it can be brutal. But many have gone before you and you can accomplish this treatment also. It is very hard on you I know, I had a long period where all I wanted to do was sleep and I would if I sat down, I could sleep anywhere. So if I wanted to do anything I had to get it done and then sit down. Since you are so well satisfied with your care team that is of great comfort in itself and it means a lot. Hang in there and sometimes we just have to hold on and go from day to day, hour to hour.
Wishing You The Best-Take Care, God Bless -Russ
"I Held On"
Take Care, God Bless
Russ
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I’m sorry to hear about the tough time you’re going through. It’s incredibly brave of you to share your journey and maintain such a positive outlook.
I can relate to your experience, as I’ve also been through a similar treatment. The mouth sores were particularly challenging for me as well. It was difficult to eat or drink anything, but I found some relief with magic swizzle and Percocet, just like you.
One thing I learned from my experience is the importance of taking a softener along with the pain meds. I ended up with a bowel blockage because I wasn’t aware of this initially. So, I’d strongly recommend you to also take some sort of a softener to avoid such complications.
Remember, every step you take, no matter how small is a step forward in this journey. Your strength and resilience are truly inspiring. Keep going, and know that you’re not alone in this.
God bless you too. Stay strong. 🙏
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Hi folks. I'm at 24 out of 33 rad teatments. 5 chemo out of 6-7.there not sure yet as to weather I get 1 more or 2 more chemo treatments.
I'm having a real hard time swallowing. I also lost most of my voice.
Any trick to swallowing water so I don't cough it back up? Also is there something easy I can use on my phone to as where I can type a sentence and have it read out loud to whomever I'm speaking with?
Thanks for any help.
God bless you all.
Wade
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Hello, Wade, glad you are almost finished with treatment and I bet you are too.
I had 2 separate weeks of just chemo in the hospital spaced out of course till my blood platelets built back up again.
Then started my regular planned treatment of 35 rads and chemo beginning, middle, and at the end.
I too lost my voice and thought to myself if I gotta make a call for an emergency to 911 it ain't happenin.
I also got to the point like you where I couldn't swallow anything, no food, no liquid. Lucky for me I had a feeding tube, a G-tube in my belly so it was no problem everything went in there for a while, food, meds, hydration.
What's going on is the radiation is burning the area and causing swelling and everything is distorted or swelled or both. It could be the reason cough water back up is your swallowing is blocked I guess it would be your throat or I guess the proper term is esophagus. Or it could just be with all the swelling that things are distorted down there and it is your epiglottis that protects your airway is causing a cough reflex and preventing liquid from entering your lungs. Which is a good thing. If you can't get anything through please make your care team aware of it. You may need to get a feeding tube temporarily and if you get one have them put a G-tube in your belly not one in your nose that is so annoying although surprisingly you do get used to them but they get in your way more than a G-tube under your shirt.
This situation will probably not resolve till some time past when treatment has finished. Just tonight I have answered another person on the time frame of recovery so I will grab that and post it here so you can have a basic timeline.
Before I do that I just looked up options to have the phone speak for you. There are plenty of options whether you have Apple or Android but I can't post them all here and we can't post search links on this site so just do a search with the words "Phone app you can type message and it speaks it back to you" without the quotes and you can sort through it all. Or try this search term "Text to speech app".
Here is the time frame info I promised that is a basic outline of recovery, keep in mind it is a slow but steady process.
So, as you get more treatments the effects will be stronger.
I would say the last week or two will be the worst during treatment.
Once you finish treatment, and it is an odd way to put it but the phrase on here is that you are "still cookin", the radiation possibly has not peaked yet and that lasts for up to roughly 2 weeks after treatment is finished. So after treatment is finished it will probably be 4-8 weeks post-treatment that you notice you are starting to feel just a little bit better and sometimes each day but it is small and this process is slow but it is sure.
So once again keep in mind this is a long slow process and recovery is measured in weeks and months not days and weeks.
So depending on the person figuring in age health how active you are, the treatments you had such as rads or rads and chemo, etc. it can take 8 months to a year or more to feel like you have fully recovered. I am talking about feeling like you are fully recovered. Post-treatment you will be improving all along and be getting better constantly but it is a slow pace. Think of a bad cold or let's say the flu it may be 2-4 weeks till you feel better. Just think of your cancer process like this only slower and stretched out over months.
That's some info for ya, hope it helps.
Here is an image of the H&N area so maybe it gives you an idea what is going on as things have swelled up...
Wishing You The Best
Take Care, God Bless
NEGU (Never Ever Give Up)
Russ
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Hi Guss.
Yes I have thought about a feeding tube. But, I can still eat pudding, yogurt, vanilla ice cream and anything else soft and doesn't burn my mouth sores.
They already give me magnesium and extra fluids during chemo. I'm there from about 8:30 am to almost 4:30 pm
I'm done sometime around Valentine's Day with both the radiation and chemo.
If I'm understanding everything correctly I'll have to wait 8 to 12 weeks after my last treatments before I can get a PET/CT scan. I read this is done to prevent false positives.
I'll try and search for a text to speech app. The ones I did find have about 100 things added with them. I want something simple. In Gboard I see a setting for text to speexh. If it has that capability I don't know how to access it.
Thanks again Russ and God Bless.
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Wade, if you can get through without a feeding tube that is fine I didn't know how well you were able to eat and was giving you a just in case. Also, I didn't know you were working with your care team closely because some don't and that you were getting magnesium and extra fluids during chemo, that is all very good it sounds like you have the situation under control.
PET scan. Many times it is given in 3 months and it seems like a protocol that has been around a while. I think they also use it to set a baseline after treatment, But I have heard it talked about a number of times on here that 3 months is too soon and that is when false positives occur and some folks said 6 months would be better. Do what your care team wants you to do in this case I just wanted to give you a heads-up on previous discussions and ideas. also here is a link to a discussion on this discussion board...it is 2 pages and some interesting results people had come up, a good read... https://csn.cancer.org/discussion/312815/how-soon-after-completing-treatment-did-yall-get-a-scan?utm_source=community-search&utm_medium=organic-search&utm_term=How+soon+to+get+a+PET+scan+after+treatment
Also, I don't know whether you have Apple or Android but I found an Android app that seems to fit the bill and am posting a video of it...
Using Text-to-Speech on your Android Phone (select to speak)
Also here is a link to that page for more videos...
If you have an Apple device here is a link explaining how to use text to speech...
I hope this helps as you finish your treatment and head into recovery mode.
Wishing You The Best
Take Care, God Bless
Russ
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Hello Wade1,
Glad to hear you're hanging in there and your treatment is nearing the end. Sorry about your drinking water and your voice. When my husband's mucositis (inside mouth sores) were at their worst the doctors prescribed him oxycodone (an opiate pain reliever). He didn't really take it but took Extra Strength Tylenol (at first). He also had the Magic Mouthwash which he never took (kept it in the fridge just in case). Then in about week 4 he got a blood clot in his leg and ended up in the ER and hospital for 2 days and they made him take the Oxy for the pain in his leg. That was a Thursday when he was discharged. By that weekend he had a really bad rash all over that leg, extending up (by Monday) on his entire torso (front and back). Thankfully we had a doctor's appt. that Monday and they knew right away it was the Oxy causing the rash. They gave him another pain reliever which he didn't take (I think Tramadol), back to the Extra Strength Tylenol. I don't know if the ES Tylenol helped the inflammation in his throat but it must have helped somehow. Also he constantly carried a Stanley 40 oz. water mug with him and we mixed sugar-free Crystal Light in the water to give it flavor (otherwise he told me the water tasted bad alone).
Keep rinsing with the baking soda/salt rinses if you're not (I suspect you are) to help soothe things. Anytime I asked to see my husband's throat it looked WAY worse than he said it felt but to me it looked awful.
The GOOD thing was that was about the FIRST thing that healed right up within one week after his last rad/chemo treatments were over. So time is on your side when you'll start to heal and I'm sure this is affecting your voice so that will heal as well. Also sounds like you're doing good still eating soft foods as you mentioned (so no feeding tube).
One odd thing was my husband's blood pressure got very low during treatment (it's since normalized) but we had to go back 3-4 times for IV fluids before the weekends so his BP wouldn't tank over the weekend.
My husband's PET/CT is in 2 weeks (February 19) and that will be 4 months since he finished his treatment in late October, and they also told us if they did it too soon it could cause false positives. He's also seeing both doctors that day with labs, so by the time we see the doctors in the afternoon we will have the results of his PET/CT.
His taste is still stable around 60% for most things (sweets which were his favorite were coming back slower oddly), but I made some turtle brownies last night and he had a big piece and said it tasted pretty good.
He is at around 15 weeks post treatment so I keep telling him he's just a bit past 3 months and doing very well. Assuming his PET/CT is normal (and we pray it will be) he's talking about going back to work part-time in April. He only works 2-3 days/week at his leisure (he drives delivering auto parts) and his boss was VERY accommodating about wanting him to come back when he was up to it.
You can do this, Valentine's Day is right around the corner. Prayers and healing vibes being sent your way.
Swoosh13/Gail
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Wade, I tried the Android app and it works perfectly, reads web pages, text messages I already have, and text messages I typed up fresh, and it will read almost anything. I did have a bit of trouble with some documents not being read but only a few. I would say it worked for me 97-98 % of the items tried. You should have no problem doing what you need with this app. That is if you have an Android phone. If not check the previous post I made for the Apple equivalent. Sort of nice also it will read the news to you or I imagine a downloaded book.
Take Care, God Bless
Russ
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Sorry I haven't been in a while.
Just got discharged from the hospital last night.
Long story short, I had close to 25 rads in and my ability swallow started to go. I was running out of spit/saliva. Which my body was replacing with his super heavy thick mucas . Which had to be coughed out every so often. Even when coughing/vomiting it up, It would choke you. So I had a feeding tube operation scheduled Friday morning. coming out of the operation I had AFib. So we had to adress that too. Plus they cultured everything. Like urine, mucas and so on. So it looks like I might be on meds for a while for the AFib. They done a echo gram, several ekgs, and I wore a Montering box for 5 days 4 nights. That's how many days and night that I spent in the hospital too.
Now the goal is speaking some sin in an get the few rads in have left and the one chemo I have left.
I hope everyone is doing good.
Bless you all
Wade.
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Wade, sorry you are having a tough time of it and several events taking place all at once. I am glad you got to the hospital and they could do what you need done to get you stabilized and back on track again to health and stability so you can finish your cancer treatments which is very important to finish the treatment regimen for your cancer.
You are not in an unusual situation, many of us have had issues after starting and doing treatment for H&N cancer. I myself developed an infected Parotid gland and was getting a high fever and getting run down in general and was sent to the hospital for 6 days to get straightened out.
I am sure it was a scary and upsetting situation but once in the hospital, I am sure you felt more comfortable knowing professional help and equipment were by your side 24 hours a day to handle anything you needed.
Praying everything is back on track again for you and I am sure they are monitoring you closely. So trust in God, pray a lot, and lean on your medical team if anything going on doesn't seem quite right call them immediately.
Wishing You The Best
Take Care, God Bless Russ
NEGU (Never Ever Give Up)
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Hello all.
Well I finished my chemo and my 33 rounds of radiation.
My mouth is still messed up some. That's to be expected.
I am so glad I got a PEG tube. Even though I had a complication while coming out of anesthesia and ended up with a 4 night and 5 day stay in the Hospital. The tube was so useful. I can't eat now without it.
Thank you for all that suggested I get one.
I finished rad 33 Tuesday. Rang the bell. I had about 15 people show up to see me ring that bell.
I'll be getting scanned in mid April.
God bless you all.
Good luck to all who is still getting treatments.
Wade
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Wade, I am so glad to hear you are finished with treatments and crossed the finish line in good style with an old-fashioned bell ringing. Now to start into recovery and at least slowly feeling better again. You are not the only one who required a hospital stay sometime during their treatment, this is tough brutal treatment. But we are truly Blessed to have the hospitals there and the medical expertise and treatment to get us through things like this. I am glad you had the feeding tube already in. You are welcome on that, I am a big proponent of feeding tubes so I probably urged you to get one. Now to get some rest, gather your thoughts and move forward to clear scans in April.
I celebrate with you...
Wishing You The Best
Take Care, God Bless
Russ
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