New to throat cancer and am not sure I can do this.

Jimbo55

Stay Strong
Lilwriter,

Tons of good advice for you to follow up with. Yes this site is a lifesaver. Next week you will reach the half way point in your treatment. Sorry it won't get any easier, but it can be done. We are all living proof of that.

It is imperative to finish the entire treatment protocol. You don't want to give this sucker a second chance at you. It's difficult at times but stay strong.

One thing that helped me through treatment was going out for some exercise/a walk every day. It helps both physically and emotionally. Physically it can help with fighting the fatigue that comes with the treatment and may help you better tolerate the side effects. Mentally, getting out of the house and outdoors would help to refresh my mind and keep me from thinking about cancer and treatment for a short bit. Cheers.

Jimbo

Hondo

Jimbo55 said:

Stay Strong
Lilwriter,

Tons of good advice for you to follow up with. Yes this site is a lifesaver. Next week you will reach the half way point in your treatment. Sorry it won't get any easier, but it can be done. We are all living proof of that.

It is imperative to finish the entire treatment protocol. You don't want to give this sucker a second chance at you. It's difficult at times but stay strong.

One thing that helped me through treatment was going out for some exercise/a walk every day. It helps both physically and emotionally. Physically it can help with fighting the fatigue that comes with the treatment and may help you better tolerate the side effects. Mentally, getting out of the house and outdoors would help to refresh my mind and keep me from thinking about cancer and treatment for a short bit. Cheers.

Jimbo

Hi Lilwriter

As you can see from all the people that answered your post there are a lot of us here who have all been where you are now. We all made it through the treatment and you can too, sometimes you need a little help and someone to talk too, as it does help. If you need to talk just give me a call, I will PM you my contact info, I am always open to help someone else defeat this Monster.

Wishing you the best
Hondo

Fanspeed

PET scan
I was told a PET scan during treatment, or up to two to three months after, wouldn't be useful because the "burning" from the radiation would obscure anything in the treated area.

I, too, had throat problems during my 37 radiation treatments. My radiation onc gave me a break of about 7 days about 3/4 the way through to give my throat and neck (skin) healing time before continuing. Magic mouthwash helped a lot, and I'm sorry you don't tolerate it well. I had drainage and an irritated throat for the last few weeks, and it made it hard to lie down - painful and difficult to swallow. I was afraid I was going to gag during the treatment when I was anchored to the table with that mask! Claritin and sufedrin helped. I used ibuprofen and Tylenol for the pain... not sure they helped a lot.

I'd urge you to stick with the plan if at all possible. Those are tried and true timetables. I think you said you have an appointment today? Maybe a little time off is in order if you can swing it. Best of luck and keep us informed!

jim2011

im positive that you can do it
I was diag with esophageal cancer in November 2010 and was cyber stalking this site because I have read that if I get a recurrence it would most likey be in the throat area. I have gone through the same issues that you are going through. The radiation and chemo have such a culmulative effect that eventually swallowing is almost impossible. Can you be put to sleep till its over? No, but you can pain medicate yourself into a near coma. Get rid of the pain and float but dont drive or cook or go down stairs and be prepared to just hang on the couch. Is that what you want? Maybe it is, but instead try to be as normal as possible.
I hated the feeding tube. I used the bigg suringe to inject water and sometimes I dissolved vicodin for the tube. Taking a shower sucked. It was -20 outside in Minnesota and the thought of getting into a car and going to radiation appointments was asking alot.
Take a little spoonfull of the magic mouthwash and just sip it real slow. Your reward is that you will numb your mouth and throat. Just a little is all it takes. Then the pills go down much easier.
Get a wedge to raise your head and upper body to sleep. I kept sliding down off of it so I also had a smaller wedge under my knees.
I took Ambien to sleep. It really helped.
During the day I took oxy and vicadin to cope with the pain and just the thought of having cancer. The days ticked by but I am generally a weak person and I still got it done.
Small goals and baby steps baby steps baby steps. Feel a little tiny bit better each day and before long you realize that you feel a ton better.
Jim

osmotar

Hi
Just a quick hello to see how you are doing....

Take care,

Linda

ladybug1123

Hang in there
I'm 38 and was diagnosed with stage IVa cancer. It was at the base of my tongue. I had 2 additional tumors in the nasopharynx.

The treatment I received was chemo/radiation combo. Chemo was Cisplatin (one of the "big dogs"). I too received 7 wks of radiation and you're absolutely right, it was very difficult to endure. I understand the pain you're feeling....it is very real. The magic mouthwash did nothing for me. I took (through the PEG) pain killers around the clock towards the end of the treatment.

I have some tips, things that helped me cope:
When the mucus builds up, swishing carbonated drinks in your mouth will help break down the mucus. Of course, don't swallow it.

When your feeding tube gets clogged, squirt coca-cola down the tube; it may take quite a bit of force depending on the clog. Doing the warm water rinse after each feeding will help avoid clogs.

If you're nauseated, ask for anti-nausea medicine each time because there are so many they can give you. At one time, I was taking 4 different kinds at once.

I got to the point that I couldn't hold anything down. It took a long time to find a supplement that I could tolerate but we did finally find one....osmolite. It was very gentle on my stomach and put the weight back on me. It's very important that you don't become dehydrated; that's what nearly killed me.

If you haven't started speech therapy, I HIGHLY recommend you start now, even though you may not be having too many problems. They will give you exercises to do that will keep your throat muscles strengthened so that when your treatments are over and your throat heals, you may not have as difficult time eating again. I did not have speech therapy during my treatments (it wasn't suggested to me) and I am 4 months post treatment and still cannot eat solid food very well. I have to keep my PEG for nutrition. BTW, the exercises do not involve eating or drinking (most don't anyway).

The chemo/radiation combination is relatively new for our type of cancer but they have found that it is the most successful. You probably do need the full treatment so as to avoid recurrence. The first round of radiation is the best shot at killing the cancer. If we have to have a second round, they can only give it to us at half the strength. My treatments were successful. My PET and exam revealed no tumors. It is taking time, but I'm starting to feel normal again; considering that I was diagnosed in February, that's pretty good. I do look forward to my sweet taste buds coming back (they are the first to go and the last to come back) and also the ability to swallow food without having to work so hard at it. My muscles did not get exercised or used for a few months and now have "forgotten" how to work;that's why I recommend the therapy.

I felt like I couldn't make it many times but knowing that my family was fighting for me kept me fighting.

You CAN get through this; you have people praying for you and anything is possible with God in control. Just remember that, God is in control. I listened to the song "Won't let go" by Rascal Flatts and imagined that Jesus was singing it to me.

Please feel free to email me anytime, lady_bug1123@yahoo.com. I don't know all the answers but I can tell what we did to get through certain issues. I will pray for you and your family.

RogerRN43

lilwriter
You must do your very best to complete treatment. It is to prevent reoccurrence. It is for you, your family, your friends.

What you are feeling is treatment related and there are ways to handle them that need to be fully explored by your team.
Make sure your health care providers hear your every symptom in explicit detail, or someone speaks on your behalf expecting action, so you can get the right meds and clinic support to bridge you through this. You also need to get nutrition into that tube, nutrition helps heal. Your husband does know it's bad but his mind won't let him, he doesn't want you to give up, it's tough love and it's his way of coping too (my wife is acting like this now), he wants you to keep those swallowing muscles, he wants you through this.

YOU CAN DO THIS

I'm going to look back at this, and maybe I'll be experiencing what you are now in 2 months when I will be at your stage. And you need to come back to me and say you did it, and you're gong to tell me "Roger, you have to do it now too!"

We all hope for a smooth road through treatment, and often it isn't. Sometimes, the rougher the road, the more beat it's getting, but it needs to be beat to the end. Sure it's easy for us to say this and that, but PLEASE don't stop walking your road. It is shorter than you think, it's 49 days. One day, one step. You have already walked a number of steps, YOU CAN DO MORE. Just a few more steps to 49. Kick this thing with every step, because this is a fight YOU WILL WIN. The alternative is not even an option.

Everyone is giving you energy, people love you and are thinking of you. I don't believe there is any moment someone is not praying or having positive thoughts for you. Feel the energy inside you, harness it with your own, visualize using it all. Visualize yourself after that last step, YOU WILL GET THERE, AND THE RIGHT COMBINATION OF MEDS, POSITIVE THINKING, AND SUPPORT WILL HELP CARRY YOU THROUGH THIS TRYING TIME.

buzz99

You can too
When we started dealing with my husbands Stage IV base of tongue cancer, we also thought we couldn't get through it. Yes, it was extremely difficult. Buzz was hospitalized for a week two different times and had numerous complications. You should get some relief from the pain with the proper medication. Buzz had a patch he wore 24/7 during the worst pain from radiation. Demand adequate pain control! That doesn't mean the pain is gone but does mean it is bearable. I assume you have a PEG. You will need to use it until you are able to take in adequate calories. Buzz lived on his PEG for a solid 4 months and it was 6 months before he stopped using it entirely. You can do this and please let us all help you through it. Karen

waywest

You are not alone
Lilwriter, I watched my husband go through months of pain and survive several major setbacks.
Although he has never posted he took great comfort from reading this board. You are never alone here. Know this, even in the darkest hour there will be a light at the end of the tunnel, however dim. There were moments when he was losing the will to survive, that's how
unbearable this can be but as many have said before me, you cannot measure your progress in days or sometimes even weeks but the light at the end of the tunnel will grow stronger every month.
Almost 6 months post treatment for SCC STG IV, and Daryl is starting to live again and take great pleasure in things that previously were taken for granted. The love of family and friends, a warm breeze on a fall evening, puppies and babies and all things great and wonderful.
I never thought that anything positive could come of this but our lives have become a celebration of life that was previously taken for granted.
Please finish your treatment, you have so much to live for, it's just not worth rolling the dice. When you need encouragement, everyone is here for you. They know.They've all been there.

Way

Hondo

jim2011 said:

im positive that you can do it
I was diag with esophageal cancer in November 2010 and was cyber stalking this site because I have read that if I get a recurrence it would most likey be in the throat area. I have gone through the same issues that you are going through. The radiation and chemo have such a culmulative effect that eventually swallowing is almost impossible. Can you be put to sleep till its over? No, but you can pain medicate yourself into a near coma. Get rid of the pain and float but dont drive or cook or go down stairs and be prepared to just hang on the couch. Is that what you want? Maybe it is, but instead try to be as normal as possible.
I hated the feeding tube. I used the bigg suringe to inject water and sometimes I dissolved vicodin for the tube. Taking a shower sucked. It was -20 outside in Minnesota and the thought of getting into a car and going to radiation appointments was asking alot.
Take a little spoonfull of the magic mouthwash and just sip it real slow. Your reward is that you will numb your mouth and throat. Just a little is all it takes. Then the pills go down much easier.
Get a wedge to raise your head and upper body to sleep. I kept sliding down off of it so I also had a smaller wedge under my knees.
I took Ambien to sleep. It really helped.
During the day I took oxy and vicadin to cope with the pain and just the thought of having cancer. The days ticked by but I am generally a weak person and I still got it done.
Small goals and baby steps baby steps baby steps. Feel a little tiny bit better each day and before long you realize that you feel a ton better.
Jim

Hi Jim
Amazing story glad you made it, I too hate the cold weather especially when I had to get up to get treatment early in the morning. Like you said we have to make changes and take baby steps but in the end when it is all over it sure feels so go to be free again.

Wishing you well my friend
Hondo

Hondo

gibkoch said:

Please hang in there lilwriter ...
My heart aches for what you are going through. All those who responded before me say it more eloquently than me but please understand you are not alone in your journey. You can and *will* make it through this treatment, one baby step at a time. I will pray for you and your family today.

Gib

Hi Gib

Sorry this is the first time I am seeing you post and just want to welcome you here to CSN.

Glad to have you my friend
Hondo