Not4me

Not4me,

Welcome to the H&N forum, sorry you are here, glad you found us.

In a nutshell, you may be nauseated, constipated, experience dry mouth, lack of saliva, mouth, throat and tongue discomfort, difficulty swallowing and eating and more….

On the other hand you may get a close look at yourself and others and if you are lucky like me, you will meet a team of professionals who may come very dear to you.

Sure there are some icky and scary aspects, but for me it wasn’t unbearable.

Recommendation 1:  start drinking water and swallowing.

Matt

 Listen to the advice you got from Phrannie and Matt. Keep swallowing! My oncologists said people tend to go on the PEG completely as soon as they have a little pain and end up taking much longer to swallow normally again. Try to eat something every day. Don't try to tough it out if you are having issues. Contact your doctor or come on this site. The people here gave me great suggestions. The treatment days will fly by, but recovery afterward can take months. You'll get through this.We'll be here for you with advice and prayers. 

wmc said:

Welcome to the H&N Group

Welcome, and truly sorry you need to be here. First off it is beatable and many here have already done so. I allways recomend going to a hospital that has a tumor board. Then all the doctors get together and decide what they want to do to treat you. You get seen by surgeons, oncology, radiation oncology, patholigy and even a nutritionist. Reason is the surgeon wants surgery and radiation wants radiation. For BOT they do chemo and radiation and some even surgery as well. What you ate going to go through, see what Matt said as he nailed it. Head & Neck cancer is said to be the second worse treatment you can go through. But great survivor rates. It will be one heck of a ride and some do much better than others and it is just luck. You just need to take one day at a time. On really bad days go hour by hour. On good days and you have then too. Celabrate every little thing you can. The one thing with finding this site is, you are not alone. We do understand what you are feeling. We have survivors and caregivers, and many going through it now. You need to keep the attitude that you will beat this and you will. Attitude and humor and toss in some prayers and you will get through this. I will add you to my prayer list and keep you in my thoughts.

Keep swallowing, you can forget how, no joke. I was not allowed to swallow anything for 9 days and I had to have a swallow test and relearn how to in only 9 days. It was because of the surgery I had to have. So keep hydrated and swallow or sip all day long and it will make this much easier.

Bill

I did not experience the nausea, had preventative meds and they worked. Worst part for me was sores on my lips but none in my mouth. Mid tx I slept thru most of the day, forcing myself to get up and take a brief walk and use my g tube for nutrition along with shlumping down the street for my tx.. I would say I slept nearly 20 hours a day and soundly. I had dry mouth and used allot of Magic Mouthwash. A couple of bouts of thrush that were rough. As soon as tx finished, I started to improve and 5 weeks post turned the corner.

Hydration and nutrition are key. Be aware of possible side effects but know you won't get them all and they come in varying degrees.

Best of luck for an easy road 

Not4me said:

Work concerns

My chemo port was installed today and other than a little soreness it is OK. 

At what point did you start missing work?  I plan on working as long as I can but I am not going to do anything crazy. 

I am going to eat like a hostage through Thanksgiving because the fun starts Monday. 

punctured my lung, so I ended up in the hospital for a week.....had that not happened, I could have worked for another couple of weeks.  I had a totally different cancer so treatment extended another 2 1/2 months after rads ended.....IF I'd been done with treatment at the end of radiation, I would have been able to go back within 5 or 6 weeks.

As it was, I was out for 6 months....between the first error with the port....and the extra months of chemo.

p

Again, welcome to the board no one wants to join.

I finished my rads and infusion 3 weeks ago for squamous cell carcinoma on the under right side of my tongue. I guess one thing I'd like to tell you is that, for me, this was much more difficult than I could have imagined. My radiation team were constantly giving me the "best case" scenario, so I wasn't really prepared when things started getting complicated. Having said that, even though it has been difficult, I'm getting through it.

Here's a brief outline to address some of your questions:

I was able to work for the first two weeks of treatment. Then, I was able to work from home pretty well for another couple of weeks.

After that, I was too busy dealing with what was going on to work.

For me, the last two weeks of treatment were the toughest and the radiation efffects continued to build up right through the end of treatment. I'm told that the effects don't get any worse for some people after they get into the fifth week. One of the slogans here is that everyone is different. I hope you are one of those.

The biggest problem for me: sore throat. I did not have a feeding tube, so I had to keep eating and swallowing. The magic mouthwash was a lifesaver for me.

For me, the first two weeks after the treatments ended were the worst, as the effects continued to build, again in my throat. there were times I really kicked myself for not getting the feeding tube. But, in the third week after treatment ended, I noticed that the sores weren't quite as bad. Now I am experimenting with what I can eat, now that the pain is starting to back off. You said you have the tube, so you will not have the nourishment concerns that I have. Keep swallowing and try to eat and drink by mouth as much as possible, because you will have trouble swallowing if you don't keep doing it.

I told my boss I would be back to work one month after treatments end, but that turned out to be wrong. I've just informed the company that I will need an extra month.

I hope this helps, especially with regard to the timeline, as I had a hard time trying to find out a real assessment of how long all of this takes.

I'm glad you have your faith. The good Lord will be with you going through this, as he has been with me.

jtl said:

My experience

Everything said so far is pretty much what I experienced.  I had scc in my oropharynx which is close to base of tongue so the rads should be similar.  I won't kid you, the treament is tough.  I did not have traditional chemo like most on this forum ( I had Erbitux) so I did not experience nausea and some of the things associated with the cisplatin drugs.  Erbitux has its own issues.  The rads are the worst.  Things are good for the first couple of weeks.  First you lose taste and then saliva and then the mother of all sore throats takes over.  The sore throat will last at least a month after your last treatment and I thought that was the worst, but maybe I was just sick of the whole ordeal.  I did not have a port nor did I have a feeding tube.  Some need the tube and some are able to make do without.  Swallowing was difficult but in a sick sort of way I kind of got used to it.  I learned to enjoy bland foods as opposed to my spicey variety.  I was retired but had I been working I really think I could have gone to work on a fairly regular basis.  I was not overly tired and I still had a fair amount of energy, in fact I made very little changes to my normal routine.  I think staying active and positive helped me through these times.  Time will go by quickly and you will have all of this behind you.  Take care and good luck.

John

I find it kind of interesting how everyone responds so differently to the treatments. I'm sure some it it can be accounted for by the variations in the radiation program the doctor sts up. I'm guessing that even  minor variations in the location and duration of the radiation beams in certain areas of the mouth and neck could provide diffferent results. And, of course, different people just respond differently.

To begin with you are in the right place for any help in dealing with cancer. I was like you never sick one day of my life, even during school all my brothers would get the flu and poor me had to go to school because I never got sick. Anyway I am NPC so I will leave it to others who had your same cancer to explain the good and bad. I do hope you will stay and become a part of our family here on CSN

Tim

Raddude said:

I am new here as well

 

I have just been diagnosed with stage IV Supragalottic. I will not begin my treatments until the first week of January because I won’t have any insurance until then. The doctors aren’t thrilled, but it’s what I have to do. They have told me I should have either erbitrux or cisplatin chemo in conjunction. However I am opting for radiation only. I just don’t understand how destroying your immune system to kill cancer is an effective way. I realize many on here will not agree, but after much research and prayer I believe this is the right path for me.

 

I have found some videos of a man named Peter and his caregiver Wieteke Koolhof and how he got through radiation using natural remedies and suffered very few side effects. Just thought I would pass these along. If they work for you, great! If you choose not to try, that’s ok too. Everyone is different. Good luck and I pray your healing and recovery are quick and painless as possible.

 

Healthy Nutrition and Keeping up your immune system during radiation

 

www.youtube.com/watch?v=I05vEd-MrOo

 

Skin Care Tips during Radiation

 

https://www.youtube.com/watch?v=wuHx34zwL0A

 

Natural Mouth Care during and after radiation

 

https://www.youtube.com/watch?v=OGieHbK8kdk

 

Welcome to the group and also sorry you need to be here. I was stage 4 before my surgery but it didn't spread to the lymph gland so it was T3,N0,M0 Supergalottic 3cm x 2.5 and in my case [bad lungs] surgery was the only option with a neck dissection on both sides and 86 glande removed.. Most do both radiation and chemo which gets all the small stuff so it won't return as easy. I wish you the best with your decision not to do the chemo also. I have seen many over the years have it comeback and then they loose there larynx. I'll keep you in my prayers.

Bill