Side affects - Calling upon members!

Stephie75

I thought this would be helpful for people that are doing research that is about to go into treatment or are in the middle of treatment, or even after.

I had a lesion on my left vocal cord. It was stage 1a, but the RO after that wait with everything decided to stage it as a T2. No node involvlement. I didn't have enough time to fly around the USA, but I wanted to get it taken out by laser. I was only able to get a second opinion at a teaching hospital a couple of hours away. They said they couldn't do it.

My treatment plan was only radiation.

7 weeks, which turned into 8 due to days off over the holidays, etc.

The worse weeks for me were weeks 7, 9, and 10. My entire neck was rated so it god pretty burned.

The burn healed the week after radiation was finished.

The worst issue I have had has been the cough. After radiation ended, once I started coughing and I couldn't stop it, and coughing out your Larnyx is a new experience. It's hard to get mucous out of there. I coughed up blood, but not a lot. It was only within the first couple of weeks after radiation.

My neck is stiff.

When I yawn, my neck stiffens up like it wants to cramp up.

I didn't get dry mouth until after radiation, and it had not been too bad.

I am trying to think of anything else... I did not get chemo, so I have not gotten mouth ulcers. I believe that comes more from chemo.

I have experienced strange nerve sensations. It has been in my arms, but not too bad.

Also, I have mucositis and nerve issues at the top of my tongue. This happened a few weeks after treatment.

My appetite is back.

However one of the worst side effects for me has been depression.

This is where I am currently at 6.5 weeks out of treatment.

I would like for others to please respond to this post and explain their side effects for others. There are people on here whole when through the whole gambit - Surgery, Chemo, Radiation. I am just a wuss in comparison. I have seen a lot of people ask about this, so I thought we could have a thread to explain what we are going through - not to scare people. Just as a comparison. I was originally just going to place my side effects at this stage in my personal thread, but I thought if a lot of people added to this with their different treatments, it could perhaps help people.

Much Hugs,

-Stephie

Logan51

Well, we are all different with our specific Cs and tx regiments. I had concurrent C&R and got zapped with Rads in 20 places/session. Nobody on the H&N Forum had the C&R regiment I did back in 09, so consider that I do fall in the different catagory.

FT and Port before tx, with 2 Cisplatin and 5-FU floodings, I was too sick for Rads in week 5 and started 6 in the Hospital getting antibiotic drips, so it was a rough battle. Thing is, the last couple weeks, after getting out of the Hospital, were a breeze. Returned to work 1 month after my last Rad session.

Stayed FT-dependent for over a month, post-tx.

Sores in mouth quickly healed, and I did not experience the post-tx "cooking" many talk about.

L'Hermites hit me early, with shooting pain in shoulder, but went away.

Developed pain spasms to both sides of my neck within a year- severe enough I was referred to a Neurologist and have been on Clonazepam and Baclofen for years to control the neuro-muscular damage on both sides of my neck.

Had the bottom of both back teeth exposed when the gum swelling subsided, to which a Periodontist (?) ground the exposed away.

Taste took a little over 3-months to come back, and it was the spicy/hot foods that registered with my taste buds.

First 5 years were very expensive with the Dental work required: Rads burn off the enamel, and damage to the Saliva glands that keep the teeth clean was not working right.

Then, some 9 years out I started aspirating. Collateral damage to the top 1/3 of my Esophagus by the Rads. Coming up on 32 months since the last time I swallowed any food, and deep bronchial coughs are routine to keep my lungs clean and avoid pneumonia. I do put flavored water ice cubes in my mouth, and in tiny amounts go thru the swallowing effort.

As for depression...maybe a little over a year out I realized I was in that mindset, which it probably is now. Back then I was able to respond to it with activity, like building very cool bookcases and golf. And was working, so all the interaction with coworkers helped. As for now...I recognize it for what it is, deal with it as best I can by getting out and about every day, and accept my as-is life as reality and keep on keeping on with as Positive a mindset as I can muster up.

Stephie75

Logan,

Thanks so much for sharing. At times I feel as though this forum forgets what it was intended for, and people get to allow too much of their private quandaries to spill over.

I created my thread for people to find that we're searching for answers like I was. There is not a lot out there on H&N.

I do hope it will help someone in the future.

As I stated in my original post, so many people ask about side effects and time frames. I thought it would be a neat idea to give their time frame and treatments because yes... Everyone is indeed so different.

Thanks so much for taking your time to contribute, it means a lot to me. I would have loved to run into a thread like this when I was doing research after my diagnosis.

Also, if there were a lot of people to contribute, this is something that could be added to the superthread, I would think... It will just take time.

My PCP was more forthcoming with me than my Oncologists. I am not kidding.

-Steph

swimbody

Good Lord. This is why I cannot stand discussion boards. All you need is one hijacker and the original intention and tenor turns into an antifa rally.

I am at week 9 following the last radiation treatment. I have relayed this to a couple of people here but I will summarize. Surgery was performed on October 27th to remove one of my lymph nodes nearest to my left tonsil which had a squamous cell carcinoma tumor on it. That was cut out but a little bit of the cancer remained on my esophageal wall... thanks to an ENT not affiliated with MD Anderson . Once admitted, it took about 4 weeks for MD Anderson to allow me to heal enough before starting treatment on me. Mid-December, I started the 1st of 33 radiation treatments. Due to the holidays they doubled up on radiation treatments four times with me. Thank goodness this was during the early stages of treatment so the pain was never really felt. Now to any of you reading this for the first time and breathing a sigh of relief, radiation is cumulative. It eventually will bite you in the **** towards the end of treatment. So be prepared and do things in advance to make the coming wave of pain as minimal as possible. Chemo was also started on the week of December 12th which was a Wednesday whereas my radiation began on that Monday.

I was given Cisplatin the first 3 weeks until the tinnitus in my ears forced me to ask for an alternative. They then switched me over to Carboplatin/Taxol for the remaining three treatments. I was originally scheduled for 7 but I guess you have to be 25 years old to be able to meet the 7th treatment. At 50 years of age my counts got too low to support another treatment without killing me. So I rang the bell after my sixth treatment. The side effects from the last three chemo treatments were nothing like the damage to my veins left behind by Cisplatin. Most everybody is prescribed Zofran but I opted out and went with Dronabinol. If you are wondering what that is, it is a lab created mimicked molecule of THC 9. It is fabulous! It is not derived from a natural plant so there is no aroma and it was rather cheap compared to the Zofran when I went to the pharmacy. I believe on my plan I got 60 x 5 mg pellets for $15 American. Ask your doctor about it and work your way up in the dosages as 5 mg is going to make you feel pretty good and 10 mg will definitely make you feel twice as good. But there were some days where I needed to take 15 or 20. One day I even took 25 mg and was riding on a magic carpet on my bed for about 6 hours but I was out of pain. I had appetite and I was not nauseated. Week six was my breaking point. I went down to nearly a thousand calories a day the week before and could not go any higher as I did not want to eat anymore. The pain in my throat became too great and on week six I threw in the towel and needed serious pain medicine. When I absolutely could not talk anymore or swallow that beginning of week 6, I was admitted to the acute care clinic at MD Anderson. I had a nasal gastro feeding tube inserted and was given a prescription of Dilaudid that I used for 2 weeks while my wife and I gave myself 3000 cals a day in liquid nutrition that went down my tube. We administered liquid Dilaudid as well as liquid Zofran because I could not get liquid THC in my system. This created constipation issues for me that I do not ever want to revisit.

As I have relayed here before, the ulcers in my mouth did not get bad until after the radiation was turned off. I asked both my thoracic and my radiation doctor about the ulcers and the radiation doctor said it was due to his treatment. I used a product called Ulcer Ease that is available over the counter as well as rinsing many times a day with baking soda and salt water.

My taste buds surprisingly started to come back pretty quickly but as I have said this is week 9 after the last dosage of intense radiation. I am probably at 50% total taste bud restoration. My energy levels are good enough that I can swim anywhere between 2000 to 3,000 m 2 to 3 times a week. I owe this exercise to me feeling as good as I do right now. I did start going through a little bit of depression the last couple of weeks as I started to review my life and what I have attained up to this point. I look at our present situation around the world and the direction that our country is headed and that brings me further sadness. I realize that there is great change needed in the world with how cops treat minorities. I know it is a serious problem and can be addressed without burning cities to the ground. This is where my depression stems from. I often wonder what's the point and continuing on this planet if everyone hates each other. I have graduated out of that egoic battle against each other. I love every single human as much as I love myself and I'm proud that I served my country with honor and dignity. I'm also proud that I introduced a company to MD. Anderson that may revolutionize the systemic problems incurred by constipation from medications administered orally and intravenously. I cannot stop thinking that maybe they didn't get all the cancer and that the phantom pains I am feeling in my throat are due to the cancer expanding rapidly throughout my system. These silly little thoughts do go through your mind as you are sitting around. Waiting for your next set of scans. Stephie et al accurately called it scanxiety. This is a real deal for patients. It is definitely something I'm going to address with MD Anderson when I go and visit them next week to get blood work and the first CT scan done. I think this anxiety could be snuffed out with microdoses of psilocybin. I've done a ton of work in this area so do not think in that pretty little head of yours it's about long-haired hippies sitting in the back of a VW van watching the walls melt. Microdosing is none of that, it allows for neuroplasticity and the rewiring of neural pathways that are centered around disparaging thoughts.

Swim

Stephie75

https://csn.cancer.org/discussion/comment/1695445#Comment_1695445

Thanks for sharing again something else that really helps me not feel so alone. I have been going through depression. I exercised as much as I could through radiation and after it ended the side effects got worse and I got depressed as well. I know if I started exercising again it would help a LOT. It seems whenever I get out of my exercise regime I get in a lower mood, it was also cold and gloomy some days...

I've read you've started swimming again, and I really hope that has helped.

I'll tell you though, I think it's part of the program through to place us all on anti-depressants after diagnosis. They put me on Lexapro. But a pill can only do so much.

-Steph

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Stephie75

Ken,

Thank you so much!

-Steph

swimbody

https://csn.cancer.org/discussion/comment/1695450#Comment_1695450

Hey my buddy Russ thanks for chiming in. One thing most people don't know about psilocybin is that it is non addictive. The plants do not allow you to come back in a habitual state. I've watched God's Garden deliver some incredible healings that would simply blow your mind. The warrior foundations I volunteer for, ie Heroic Hearts Project, Warrior Angels, VETS (vets exploring treatment solutions) use psychedelics right alongside prayer to God and all the ancestors who have passed over before us. It's one of the most beautiful things I have ever seen, AND that trumps what First, Second, Third (lol) Baptist and their insane display of wealth tried to show me when I was a younger man. The church never appealed to me as I've lived on this planet thousands of times and all they've ever tried to do was take my money. You might have, in a past life, been a man or woman of God or and perhaps, held on to your beliefs so strongly that you wanted to affirm them in this lifetime...good for you. My relationship with God starts every morning with deep meditation. I have an incredible relationship with the Creator and we are working together, hand in hand, to allow Itself to experience pain and growth through my eyes as It's done for you. In fact, I don't call It separate from me. For It is Me and I, It. If more people on this planet realized this we'd put down our weapons and hug each other. It would be the greatest realization for humanity.

Stephie75

Psychedelics have been used for years alongside therapy. There is actually nothing addictive about them. Sometimes an open mind to things you would normally think about helps... [Content removed by CSN Support Team]

It does not always have to be conventional therapy by other people's standards. As I have told you before I am a spiritual person like Graham. I feel the strongest we can be is within us and as a group, we could be unstoppable... As the Bible states, we are his creation after all. I feel that is why a group of people can help others so much through their energy!

I'll just place this article here: https://time.com/5278036/michael-pollan-psychedelic-drugs/

Perhaps our beliefs do not match yours, but that should be okay! Everyone is different after all! 🙂

Maybe that link will give you a different mindset on it. If not, I understand. Everyone has their own opinion on things.

All my best, 🤗

-Steph