Hello all ...
I've just started coming to this forum a couple of days ago. I find I can't stop reading. This has been a wonderful resource for me, who will be caring for my sister in a couple of weeks as she begins her 2nd round of radiation and her first round of cysplatin chemo. She had 3/4 of her tongue removed and reconstructed, and some lymph nodes. She is stage II-III tongue cancer. My question is this ... she is herself not up to reading and posting as she is just out of the hospital from the surgery a week. Today she had her first success with getting some liquid vegetables down with water and much effort. It's hard for me to understand what she is saying, so I can't be specific. She seems to be very up, after a week of suicidal thoughts. Now the hard part ... she wants to know what everyone on the forum says about the upcoming treatment? She wants to hear about what to expect, yet I imagine her doctors have told her. I don't know how much or how little to tell her. I don't want to tell her all the horrible things I read and all the struggles that everyone is going through. Yet, I don't want her to be in the dark ???? I have not been with her yet, to meet the doctors etc., so I'm just not sure what is the best way to help her with her questions? I certainly don't want to upset her more than she already is, but just from my short time in researching her condition and treatment, I know this is going to be a tough road. Her first radiation was "brachy therapy," the radiation inserted in her natural tongue through rods inserted in her chin. Some of her original tongue was damaged, and she says her throat was sore. Her next radiation will not be that kind. When she asked me about the chemo, I told her, "well, we have to really be careful about your nutrition and that you are getting enough to sustain you through this time." I didn't know what else to say, but felt from her that she knew I wasn't telling her all that I knew. You all have been there yourselves, please help me know what to say to my sister. With kindest regards and many prayers ... Betty

Hey Betty,
As a caregiver, I know what you are going thru. I think she needs to know that it's just so different for everyone. For my Dan, radiation was quite hard, chemo not so hard. The anti-nausea drugs given before each chemo helped a lot. Dan took nutrition from a PEG tube for about 5 months. He has been slowing eating for the last month...very little at first and better now. He just had his PEG removed yesterday and is doing well. As Dan Bogan and many others say...tell her to measure progress in weeks...definitely not days. That really helped us thru. Sounds like she is fortunate to have a good support system thru you and other family members. We had a bible study support group that was definitely from God and so well received and helpful for us. You are in my prayers!!
Debbie

Betty,

As Debbie states, the treatment plan could be the same or different than others but even the exact same treatment may not have the exact same side effects on two different people. I have a friend that was diagnosed with esophageal cancer and they removed most of his stomach plus he had 6 weeks of radiation. He had Cisplatin every 3rd week and 5FU nonstop for the entire 6 weeks. He had very little in terms of bad side effects and went with us to the Eric Clapton concert for 8 hours because we puposely went late to be able to stay awake long enough to see the end. His radiation just finished two weeks ago. He has a scar down the middle of his front that looks to be at least 30" plus about a 20" scar around his side and back. He never says anything about being sick or feeling bad. I am amazed at how well he did.

There is a lot of information available here to research treatment options and what to expect. You could find the info for your sister and direct her to the reading. The doctors also will prep her on potential issues around the treatment plan they develop for her. The key is to keep on top of all the nutrition and blood work. Don't let the blood counts get so low that they have to stop the treatment if you can help it. Don't drag it out any longer than it needs to be.

Just keep telling her she can do this. Many people have and many more will. As the problems develop, work on the worst one first and have her help to determine what is the main thing bothering her all along the treatment and recovery. If you focus on the one thing to correct, soon your list will be smaller and smaller and she will be well on the road to recovery.

I wish you both the best and if you need anything we are all here for support.

Ed

Betty,
Everyone responds differently to treatment. Some have a very difficult time and some don't. Attitude is everything. An attitude of acceptance will go a long way. There can be many complications from radiation and chemo but with a good team they are manageable. It's good to have an idea what to anticipate because having too high an expectations can cause a lot of fear and uncertainty down the road. This is a fight for your life and it can be a hard road.

Many of us have fought the good fight and are enjoying life again, and in many cases treasuring life in a whole new perspective. I look upon every day now as a gift. Like all good sailors know, it is important to stay focused on the horizon.

What got me through it was my faith in God and a belief that I would be healed no matter what -I never wavered from that no matter how hard it got (that was my horizon). I spent a lot of time talking to (and listening) to God during radiation. I brought my own custom CD which was mostly gospel and other "up" Christian music. It made the treatment times zip by and relieved my fear of getting sick while in the mask (never happened). It also helped me to complete treatment on schedule which is very important I am told. It also gave me something positive to focus on because the committee in my head sure didn't want to go down that road. Probably drove the techs nuts because I played the same CD every day! I stopped in to give them a hug last week and they remembered me from the music.

I am not trying to preach or proselytize here, I am merely sharing my story of what worked for me. We all have to find our own path in the journey.

The "bread of adversity" exists to develop our character and refine our weaknesses.

The Navy Seals use the saying "That which doesn't kill you only makes you stronger".

I have already had another year of life that I might not otherwise have had and certainly one of the most meaningful.

Debbie,Ed and Gary ...

Your posts are inspiring. I've cut and pasted them in an email to my sister. I know this will help her to move forward towards the treatment. I will make a constant effort for myself and her to "measure her progress in weeks not days" and we will also keep focused on the "horizon." I have renewed strength this morning. Thank you all.

Love & Prayers,
Betty

Betty,

As some of the others have noted above, each person may have a somewhat different reaction to similar treatments, but there are some issues to watch out for as your sister's radiation goes along. I had the tongue surgery first, then external radiation, and finally brachytherapy.

The effects of radiation tend to get more and more pronounced over time (and sometimes they can sneak up on you). I remember going for periods of several days thinking I wasn't feeling too bad and then without warning, the next day I would feel as though I had hit a wall. The most common side effects are fatigue, dry mouth, temporary damage to taste buds, swelling, visible radiation burns (sort of like sunburn) around the treated area, and potential for infections and sores in the mouth. I remember a couple of times when an infection would start to crop up almost overnight and the doctors had to deal with it immediately to keep it from becoming a much worse problem. My doctors warned me ahead of time that we would have to watch for all these things, but sometimes I think my mind was overloaded with everything I was supposed to take in, and the symptoms suddenly became much more real when they actually happened.

The point about nutrition is that, if and when the above side effects kick in, good nutrition becomes harder and harder to maintain. It's something that has to be a collective effort of patient, family, doctors and nutritionists.

Please keep us informed as your sister progresses through this.

Cathy

Hello I'm sorry your sister is going through this horrible time.

As stated so many times everbody is different, but most everyone reacts to radiation in simila ways, timing is the only difference. Fatigue will be a problem, as well as an extrememly sore mouth and throat. She will mostt likely have blisters in her mouth that turn into nastty sores that take awhile to heal. I had radidation burns on my neck. The chemoo wasn't too bad for me because I responded well to the anti-nausea meds they gave me. My veins are toast now but other than that I'm fine.

Suggestions:
get a PEG tube before radidaiton begins, some make it without, but those most likely had their whole tongue
get a suction device from a medical supply co. It will help with the thick secretions.
Stay on top of pain and bowel medications
she should sleep at least at a 45% degree angle. (no one mentionsss it but after about 3 weeks you start getting this gross brown mucous in your throoat at night. since my swallowing mechanism turned off after a while, it pooled up in the back of my throat and I would wake up 2-3 timees to suck it outt.

Please keep us updated as your sister's treatment continues.

I hope I haven't been too detailed.
Lynn

Betty, when I was facing first surgery and a trach and a PEG, then rad and chemo, I absolutely wanted to know everything I could about it. My thinking was that if I knew the worst it could be, I could psych myself up to take it. When I did know the worst and all the gorey details, it wasn't nearly that bad, so I felt I got off easy. Only you know your sister well enough to tell if she wants all the info, but if she does, I recommend you hold nothing back. An informed patient feels more in charge and less buffeted by the system. Good luck to both of you.

Betty.. I want to know everything... my fear is waking up from the op to find they have done something I didn't know about or don't understand.. the idea of being doped up and panic stricken horrifies me.. so if she really wants to know pull no punches...
sunshine... love and hugs
Helen