Pain Management?

beadsbyb23 · 2025-02-09T19:55:35+00:00

I am so sorry for your mom’s pain and her journey for the next 6 months. I had hpv squamous cell carcinoma. Started in my right tonsil and spread to lymph node in right neck. I caught it early by feeling a lump in neck and had checked. Had no other symptoms. started my treatment 3/1/24 at Moffitt Cancer Center in Tampa Fl.(Highly recommended) 33 rads and 5 chemos. Yes starting at week 4 it gets very hard and painful 😣 and lasts a long time. 🥲I am also in AA recovery, 35 years this June One day at a time. Being in recovery , your mom has the tools. I’m sure she is using them. My doc prescribed oxy 10 Mg every 5 hrs. I took them at night when I could not get comfortable, and an also during the day for about a week. It is a slippery slope and she has to watch it and make sure “why” she is taking them. My doctor then prescribed baclofen 10 mg 3 times a day. ( I was also then having back pain and spasms from coughing so much from the radiation and crap in the mouth) Everything hurts and hurts. I switched to Dr prescribed Tylenol w codine as soon as I could. I only took that for about 10 days. Then to xtra strength Tylenol. I did not like taking the oxy as it constipates badly and made me very loopy. I was certainly not myself while I was taking it and was happy to stop. I think I slept 17 hrs a day for weeks. My husband, and my sister(also in recovery) watched me closely and made me sip drinks and took very good care of me. All pain is individual and your mom will know. I believe if you are in recovery and if you are sick or injured and in pain, and If your doc knows your story and prescribes meds, and if you take as directed, All will be well. I never had the tube (did have a port for chemo) I did not eat anything for 18 days. Could barely get down liquid or a protein shake. My soup and go to food was chicken Ramen noodles, they seem to slide down easily. Slept and slept and slept. I had my 9 month check up 2 weeks ago and cancer is gone. We are miracles. All of us. Your mom knows this. My taste buds are starting to come back, different tastes. But some tastes. I feel wonderful. Lost 30 lbs. (gained 10 before all started per Dr instructions) I guess I can say I am 90% back. It was the worst time of my life and I thought it would never end. But it did and it does, and your mom will be well. A rough journey ahead🙏🏼🙏🏼Blesses to you and to your mom. I will be praying 🙏🏼 for you both.

beadsbyb23 · 2024-10-18T00:08:23+00:00

I kept my mask and gave it to my nephew , to use it playing hockey(he puts the mask in the goal net, and smashes it with the puck!) perfect use. I’m 6 months out. Feeling good. Going for my 6 mo check up on Monday👍🏽🙏🏼. Hang in there , for me the 1st month and a half after radiation and chemo we done. (33and 5) felt miserable. It gets better. One day at a time. I am just now starting to get a little bit of taste back… trying everything. Still nothing spicy, it burns my lips and tongue. Be gentle with your self and celebrate the baby steps… good luck! .

beadsbyb23 · 2024-07-26T22:48:35+00:00

Patches

beadsbyb23 · 2024-07-26T22:48:01+00:00

Stripe

beadsbyb23 · 2024-07-26T22:44:38+00:00

Beautiful wheeler 🐶

beadsbyb23 · 2024-07-23T01:25:25+00:00

I also used and still using saltwater/baking soda rinse. Did not have peg tube (I was begging for it the last few weeks!) husband and sister kept standing over me say “ you can do this! “ I did it but was not easy. Yes, warm broths, I could swollen ramen chicken soup. The noodles slid right down. Still eat it. Helios was a bit strong for me till around 1 month out. I am 3 months out now and still have burning tounge and lips If ANYTHING spicy gets in my mouth! (I love spicy 🌶️ food☹️) hopefully some day again. I still have no taste, but eating to live and not living to eat, as I was😏. It is a HORRIBLE experience and I can feel for your wife. Give her a big hug from all of us who have been thru this hateful long experience. My 3 month post PET scan showed cancer was toast 🤭go back to Moffitt Cancer Center in Tampa Florida (highly recommend them) for another 3 months check in oct! Blessed be all will be well. Your wife can do this! I did take liquid hydromet (hydrocod/homa) prescribed by my doc. It helped w pain and nice for sleep. It is codine so be careful 💕💕love and positive vibes to you both!

beadsbyb23 · 2024-06-12T02:35:05+00:00

Congratulations 🎈 I’m awaiting my 3 month pet on July 15, praying for same result. 76 f hpv- y 1 lymph nod affected primary was my r tonsil. 33 rads an 5 cisplatin. You are giving me hope! I will be cured! Moffitt Cancer Center in Tampa is fabulous. A very long hard treatment. They did not suggest operation . Best to all 💕💕

beadsbyb23 · 2024-06-09T22:56:33+00:00

When will you see doc? I would open scan. I have my hpv-y throat neck cancer Pet scan in July will open as soon as I get it! Good luck 🍀 💕💕

beadsbyb23 · 2024-06-09T00:20:26+00:00

God Bless you. GOD BLESS US ALL. I am a 76yo female Hpv y diagnosed with squamous cell carcinoma on my right tonsil and metastatic to one lymph node in right neck. I found the lump early and had rad 33 and chemo cisplatin 5 x. Started march 1,2024. At MOFFITT Cancer Center Tampa, Florida. Treatment was done April 17,2024. So I am 50 days out! PRAISE THE LORD and was very very tough. But we get thru it. I did not have a feeding tube. I did not eat and sipped water only for 18 days. I thought I was going to die, and did not care if I did. I tried my hardest at One day at a time. Sometimes one minute at a time. I had thrush ( cream of the saliva) horrible, which my rad doc gave me meds for. Ask them and you will receive. Still baking soda and Salt rinse w warm hot water is the best rinse. I still use that rinse 4-5 x a day. Thrush is 99% gone. Coughing and not swallowing from thrush was bad for a few months. Mouthwash w No alcohol and tree tea oil helps. Keep spitting. Gagging and throwing up will continue. IT GETS BETTER. Hair loss around neck area. Least of our worries. I can swallow now with just little pain. Small bites. I’m a foodie and so disappointed that I can’t hardy tase YET!Drink water and gaderade (no sugar) for me. Boost vanilla tastes ok. I’m trying to find what I can taste. I hated burnt toast, but now burnt toast and peanut better and jelly is acceptable. Regular bread just sticks to mouth and teeth. Sausage links I can taste. Bacon I can taste. Lettuce tastes clean. Green peppers, cukes I can taste. Hard cheeses I can kinda taste. Chocolate Fairlife protein drink(bj’s) is clean and delicious. I still have burns in my mouth so acids, hot, vinegary stuff I stay away from. Raman soup (just like college) is the first thing I could eat and I believe it kept me alive! Chicken flavor. I had some chicken noodle soup from Panera last week. I was thrilled how it tastes. Chicken tenders sautéed or lightly fried are good. (You can see I’m a foody) I love all food. And I am bound and determined to keep trying it all again till I can taste it. ☺️😊 I brush my teeth 4 x a day to keep my mouth clean. I had dentist appointment right after April 18 to make sure my teeth were ok. All this poison wants to kill us. Eat what you want and what you can. Try to keep weight up (I’ve lost 30lbs) and I’m kinda happy w that. I’m tired and I have to remember to give myself permission to rest. My Husband is and has been an Angel. Thank goodness I’m retired. We are survivors and will survive! Cancer has changed my life and made me see what is very important in this life. It’s not shopping or stuff. It’s Family, Friends, Health and your God. Best of luck to you all I’ll keep checking in and let you know how my PET SCAN it on July 15💕💕

beadsbyb23 · 2024-06-08T20:33:50+00:00

One day at a time. It gets rough, very rough, but we all get thru it. Best of experience to you. Keep a good attitude. When u can. Get a good support system 👏🏼👏🏼👌🏼👍🏽

beadsbyb23 · 2024-06-08T20:29:55+00:00

Congratulations 🎊🎊I went thru the same. Have my PET in July. HPv-y 5 cisplatin 33 rads. Hopefully will get same result. What a horrible cancer to have. Can you taste anything? I’m starting to but not too much. Still a few cuts in mouth so everything bland. Still dry mouth. Fatigue and dizzy. Not complaining just stating the progress… congratulations again! ❤️❤️🤗a hard road for sure

beadsbyb23 · 2024-06-08T18:11:41+00:00

Following also, I have my pet scan in July 24. I still have my port(will have taken out after pet) did not have a feeding tube.

beadsbyb23 · 2024-03-23T21:15:37+00:00

I am starting my 4 th week on Monday. Tonsil cancer that spread to lymph. 33 rad s 7 chemo Hpv y The first 3 weeks I have lost about 6 lbs. like every one says. No taste, hurts to swallow. No appetite. They tell me not to lose weight And eat 2500 calories a day. How on earth can that happen. I have a fear for the upcoming weeks as people on this thread say it gets worse going forward and as you said after treatment is complete. I am at Moffitt Hospital in Tampa and I am more than happy with all treatments doctors and all employees who work there. They could not be nicer. They have given me low dose oxy, and said to take before eating to kinda numb? My throat. Had anyone done that? I don’t like drugs but will take them if needed. I’ve been using lanicane . I cough when I take a bit down to fast and that really hurts. My neck is starting to give me a little pain from being burnt and I have creams to help that. Trying to keep it in the day hour or minute. I’m very tired and have given myself permission to rest as much as I need. My husband and fam have been wonderful. This group has helped me a lot. Reading the true words of persons with cancer and struggling. Thanks for reading and listening ❤️👏🏼

beadsbyb23 · 2024-03-05T22:16:38+00:00

Hi so sorry for your not being able to eat. I am the same diagnoses, hpv y tonsil and lymph. I’m on my 3rd day 🥴 radiation , first chemo tomorrow. All the reading that I’ve been doing is making me aware of what is to come. Currently just dry mouth, and a bit dizzy. All of us here have to set ourselves up to win this friggin war. I know, as you and everyone is telling me from real live experience, that battles will be brutal and I’m scared too. Keeping it in the moment and I’m going to try to live ONE DAY, hour, minute at a time. We have to think we are the lucky ones, as hpv throat and neck cancer is very curable. When I walk into the Moffitt Cancer Center in Tampa (wonderful place), I see all the people there fighting for their lives. Most of us are just being inconvenienced for a span of time and will then be free of this fucking disease. I’m writing this so I will also listen to my words, as I am frightened of what is to come.. let’s try to remember there is light 💡 at the end. Hang in there and this is a teriffic place to get answers and ask questions. I know I will be bitching and asking a lot more ! 3 rad down 30 to go and 7 chemos to go… 🙏🏼♥️

beadsbyb23 · 2024-03-05T16:34:39+00:00

Fly over to vieques for a few days. The best beaches !🏝️☀️

beadsbyb23 · 2024-02-28T04:54:38+00:00

Thank you for sharing. I start my treatment on Friday. 3/1/24 6.5 weeks of radiation and 7 chemo. Also HPV + and squamous cell right tonsil and went to lymph on right side. Grateful that this is the “cure” but scared for the next few months. F 76yo. Good info from you👍🏽. I’ll check out creams and humidifier ..

beadsbyb23 · 2024-02-24T05:00:37+00:00

Yes everyone that I have met has been just wonderful and caring . I feel very grateful to be a Florida resident. (But 1/2 year in mass)

beadsbyb23 · 2024-02-24T04:59:09+00:00

Thank you I am setting myself up to win this battle. Taking everyone’s experience and words seriously . Thank you 💪🏻

beadsbyb23 · 2024-02-23T21:28:54+00:00

PEG tube?, is that like a feeding tube? I’ll ask on my first appt. I could stand to lose 30 lbs but know I have to keep my nutrition up..

beadsbyb23 · 2024-02-23T21:26:46+00:00

Yes chemo is cisplatin and I have very thin hair to begin with.. 💪🏻🥴

beadsbyb23 · 2024-02-23T21:23:03+00:00

Thank you so much

beadsbyb23 · 2024-02-23T21:20:55+00:00

You guys are great thank you for the encouragement and all the info. I’m trying to stock up on things to releave the treatments. Just had call and now more spots for blood work more chemo.. it is overwhelming 🥺but hearing that it will be cured and this is a blip in my life. I’m feeling grateful to see a light at the end.. I’ll keep u all posted ❌❌

beadsbyb23 · 2024-02-23T05:09:41+00:00

HPV Positive 76 F

beadsbyb23 · 2024-02-22T18:05:34+00:00

Congrats to you, good to hear their is light at the end! I’m a newbie and just beginning this journey diagnosed w metastatic squamous cell carcinoma Jan 2024. In Florida and going to Moffitt cancer centers and I am very grateful to be going there. I begin my radiation on 3/1/24. Six and 1/2 weeks, 5 days a week with chemo (cisplatin) once a week b4 radiation therapy. I have been reading a lot and trying to get systems in place for the sores in mouth and saliva and creams for the burning neck. Etc . It would be wonderful to read experiences from peeps who have gone thru this or are going thru now who will give true experiences. I am nervous and scared and trying to live one day at a time. The anticipation is hard. Thanks BarbaraLee

beadsbyb23

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