Hi,
I started the week thinking I would have one more simulation, but instead:
1/19 began with the real thing, radiation to mouth and neck
Followed by two treatments the next day and one to end the week
This brought me to 4 treatments which my RO said was better to start with than only 2.
Yes, I disliked the mask, especially on Friday, but I think part of my hair got bunched up in back; they adjusted it & it was better.
I am slightly sore from radiation, noticed it especially along my neck scar line which the RO wanted to target.
Then, Friday evening I ended with chemo, Cisplatin, which is just a boost to the radiation. I was scared to death, the only one in the waiting room who did not have anyone with them.
When they said they were giving me a steroid IV first, I wanted to opt out. Taking prednisone makes me crazy. They also gave the anti-nausea drug via IV. (actually not sure which came first-steroid or anti-nausea) Getting the IV of all those was not too bad. My husband flew into the Houston airport just in time to pick me up at 9:15 pm after my treatment.

Saturday--Sunday am: Not so good. I only had to take one dose of anti-nausea combo (Atavan, Benadryl, Haldol)on Friday night and it was just cause I felt slightly nauseated and did not want it to get worse. This also let me sleep as I was riding high with the steroid until midnight. But Saturday, I noticed a definite effect on my radiated regions--more pain, etc. Also, by the end of the day I felt really constipated. I took docusate sulfate. Not much yet. I was not expecting this. I did have a what I think was a case of mild food poisoning last Tuesday, which gave me a few GI problems, but I felt good enough Wed, and thought it was cleared up by Friday morning. Plus I cannot seem to sleep very well, don't know if the steroid stuff would still be circulating? That would explain it. In desperation I found Power Yoga or something like that on TV and went through what I could with it. Some better with anxiety anyway.

What fun--not. Then I get to start again tomorrow. Sorry not to be Ms. Sunshine. I tell myself, it could be worse.

Anne O.

Anne, Im sorry you have had a bad week. Its not going to be easy but you will get thru this. Looking back on it, I find myself thinking that it was one of the worst times of my life. Thats the honest truth, its a rough road. You are currently just beginning, it will gradually get more difficult as you get closer to finishing. Thats the most important thing, to finish your treatments. Do your very best to maintain a good level of hydration, 48+ oz water and 2500+ calories daily. The better your nutrition, the easier it will be for you to do this. Keep up eating as much as you possibly can and drink water daily even if its in a few sips at a time. Constipation is a side effect of this so keep an eye on it and take meds for it. A daily tablespoon of karo syrup will help.

You are correct, it could be much much worse! Many patients struggle with depression and take anti-depressants during treatment. Many also will need to see a therapist to help them with what they are going thru. Dont be ashamed if you need help, most people do.

We will be here for you during your treatments. Dont ever feel alone, we are here 24/7 and will help get you thru this.

Christine,
Thanks for your post and being so supportive. I am not usually depressed. But it takes me maybe longer than some folks to "get used to--whatever", if you know what I mean. This week was full of surprises, which I guess--is not surprising:)

I wish I knew about the steroid IV, how long it will last. Judging by my feelings, the effects are still here.
Anne

Anne,

When one starts RT, it can look like it will take an eternity to finish. One thing that helped my husband was to mark each day off on the calendar. That way he could have a visual reference of accomplishment and of how many days were behind him. Also, constipation can also be treated with MiraLax. It has no taste and really worked for Clark. You can take more than one ducosate sodium in a day. Check the package. It is not a stimulant but a softener.

You have a rough road ahead but you are not alone. Many here have been there and will support you. Take one day at a time.

All my best-
Anita

Anne, I'm sorry to hear about all you're going through. No question, it's a tough treatment and you're showing a lot of courage. Words at this point are merely that. We all know what it's like and our thoughts and hearts are with you.

D2

PS I found Compazine to be the best help for nausea, btw, better in my case than newer drugs like Zofran.

Anne, I too am sorry for your difficult week. I know you will have some "Hey, I'm feeling pretty good" moments in your journey. Acknowledge and cherish and know that there will be more. I found that prednisone would wire me for two or three days and your body may be reacting in the same fashion. Anita suggested Miralax and that product has been good to me as needed over the past several years.

Hi Anne-

I am thinking about you! Sorry you had a bit of a rough week. Hopefully now that you know what to expect things will get easier--at least less stressful.

Miralax is a great product but often takes a couple of days to get results. Decreased activity level, pain meds, and decreased fluid intake can all contribute to constipation. The stool softener is good also-- you might want to just stay on a stool softener one to two times a day.

Glad your husband is there with you over the week-end.

Susan

If you have a peg tube then take advantage of it by taking meds with it. Be careful not to crush and disolve any time release meds. I used the karo syrup mixed right in my feeding formula. I use a kangaroo pump to get my formula. The everyone is different saying is true, David likes the Compazine while I like the Zofran for nausea. The Compazine made me a nervous wreck, I paced back and forth. It was awful, I couldnt sit still. Just cuz it happened to me doesnt mean it will affect you like that. I wanted to let you know just in case you are having a reaction to anti-nausea meds instead of the steroids. I know steroids will stay in your system for a while. Hope this info is helpful to you. Best wishes for an easy upcoming week. Dont forget we are right here for you to lean on!

Anne

The nice thing about OCF is nobody expects you to be little Ms Sunshine since we all know just how sh*tty this disease is both literally and figuratively. I found laxatives and stool softeners ineffective or inconvenient. Suppositories worked perfectly within 20 minutes of insertion.
All this will pass
Keep the Faith
Charm

Anne,

I knew I would be able to catch up with you here. Sorry things are getting rough so soon.

I hope that your plans for help will be going into effect real soon, before things get more difficult.

Hang in there and some day this will all be a distant memory.

I am still constipated but do manage one " Excavation" weekly. It's either like Niagra Falls or an Elephant came thru my bathroom. I sometime think this is the thing that causes me the most worries. What we need is poop proof pain pills. LOL

For the constipated in the group - I have to share... Try taking live refridgerated probiotics - I buy a 60 pill bottle for $20 and take 1 a day. They keep a person VERY REGULAR!!! Ask your doctor first - of course but I swear they are awesome!

Hi,
I have been doing really well both Monday and Tuesday. I really think it was the steroids that put me there, but I don't know. I will mention it to the MO.

I walked a good deal yesterday, and that was beneficial to me, in terms of attitude and getting the plumbing going. I am leaving early for my afternoon appointment today and plan to do the same thing.

I am eating ok right now, I am not on any pain meds, and was not last week either. At MD Anderson, they have booklets they give you that go over all the allowed and not allowed over the counter remedies, etc. Like the teacher I am (hate to mention that for you that might not like teachers, I used to think I would never be one, but my subject is music so a little different) I have tried to stick to that. Of course they don't mention every possible med or remedy one might try. I have an opportunity to ask about some of that today.

I appreciate everyone's concern and realize there will be other trying times like last weekend. You really did help me just knowing you were out there.

Thanks, friends.
Anne

Hi Anne

Just a note on the walking: Last year when I was looking for statistics to scare the crap out of Alex who was struggling with quitting smoking, I came across an article by Dr A Chen who reported in his trial the 5 year survival rate of those who continued to smoke through radiation was less than half that of those who gave it away (I'm getting to the point, don't worry).

According to Dr Chen, radiation requires good oxygenation to produce the free radicals which target cancer cells. Walking ensures good oyygenation. This means walking helps radiation to kill cancer!! Link to article below.

Isn't it nice to know you can actually do something to help your treatment? Alex also walked at least 1km every day to pick up or drop off the car to my work and it became an important thing for him to maintain his sense of purpose, since eating and working was a dim memory. It has become part of his daily routine to meet me for coffee, regardless of his car needs (until tomorrow when he restarts work after nearly 12 months - hooray).

Re the steroids: I have never been sure if they were given to stop a reaction (like an allergic reaction) or as an anti-nauseant as they do both. Either way, I am sure the doctors can substitute something else. When Alex went through his triple therapy chemo alone, he took steroids the day before and continued for 2 days after (oral and IV). When he was doing chemo/radiation, he was given it IV only on the day. This makes me think it was for reactions during chemo and for nausea during chemo/radiation. I could be completely off base though ...

http://www.sciencedaily.com/releases/2010/04/100427171847.htm

Karen,
Thanks for a great post. It is empowering to think we could actually be doing something to make our treatment work better!
You are right about walking giving us purpose--and control. It makes us feel better about ourselves.

Thanks for the thoughts on the steroids. I will be discussing them with the doctor Friday.
Anne

Dear Anne: I am sorry to hear all this. I start radiation and chemo (cisplatin) next week. Today I met with a nurse to go over the side effects and everything your saying is what she told me would happen. We can do this, though; we can do this. Hang in there. -Michelle

Ativan is not powerful enough to quell the nausea from Cisplatin. They have SSRI type anti-nausea drugs (such as Zofran or Emend) that switch off the nausea center in the brain (well, most of the time anyway). Cisplatin also does a number on the GI tract, in general, so industrial strength antacids will be required as well, Famatodine (Pepcid AC), etc.

When I was getting Cisplatin I was nauseated most of the time until just before the next infusion and then it was exponentially worse. We all respond differently, however, so your experience might not be as bad.

You MUST drink lots of water daily during chemotherapy to protect your kidneys from damage, 2 liters/day I believe. Stay hydrated - it will also help mitigate the constipation issues.

As you are finding out this is no walk in the park but you can get through this - take it one day at a time.

Jim - TOO much information ;-)

Gary and I had the 3 big bag method of Cisplatin as it used to be the ONLY delivery method and I also had nausea that wouldn't quit but some are now being given 6 smaller weekly doses and most have not reported uncontrollable nausea issues. Bear in mind that there are NO studies indicating if this method is as effective as the "gold standard" 3 big bag method.

Hi Anne,

Thinking of you. Happy to read the good report from 2 days ago.

I'm trying to get home from Utah and that may be a little difficult due to the East Coast snow storm yesterday.

Keep the good news coming.

Jerry,
It has been a fairly easy week. I am taking Nexium, Ativan (limited amount), and I will have another cisplatin treatment tomorrow. They will give me steroids (maybe & probably) again,
and Zofran IV. This really does minimize nausea although I will surely be wired again. I also have at home prescriptions of Zofran and their MD Anderson cocktail of ativan, benadryl, and haldol, which really did work with the Zofran already in my system.

I guess I may be lucky in having cisplatin in smaller doses for 6 weeks, had not thought of it that way before. I talked with a year out patient who had the 3 dose method for a longer infusion time, so I know they use both methods. Perhaps it depends upon the patient's particular situation? He told me he did not have surgery first, which I did. Our situations differed in other ways as well. I do not know who had a more advantageous one, they were just different.

This is hard stuff, making decisions on doctors and their proposed treatments, but once you've made those decisions, hopefully you trust them, which I do. I know the docs here discuss their treatment plans with each other before they come to the final one.

Anne

Glad to hear you had a fairly easy week. I hope all the rest are just as good. It sure seems like they have a good approach.

Hang in there.

Hi Anne,
Glad to hear this week wasn't too bad. Just something I notoced you said at the beginnig, that your sknin was a bit sore. It will probably get much worse, and make sure you moisturise the neck area. We were prescribed generic aqueous cream. I had a giant pot and used to lay it very thickly 1/4 inch thick on his neck and we had a thin cotton scarf given by the nurses and wrap his neck in it. I did that at night before bed and after the radiation (we had to rinse it off before the radiation). It worked miracles, his skin didn't blister. It did get very smelly but one day in the shower the moisturised dead layer of smelly skin fell off and there was new link skin underneath. So moisturise a lot.
As for the constipation Martin says it feels like he gives birth to an arm but he has been prescrived Latilose and it lubricates and helps, he says.
Good luck.
Cecilia

Thanks for your post Cecilia. Made me realize I needed to update.

So I am now at the half-way point of my treatment (well I will be after the radiation treatment on Monday). It does feel good to say half-way done, but I am aware that this was probably the easier half, though maybe not psychologically speaking, at least for me.

Radiation: I am finding a little bit of mucositis. I guess it is not troubling me more because I have saliva from my parotids. I did not realize this until recently (duh, I know) that they would be able to spare them. That is pretty exciting to me. I almost hate to mention it here because I know that lack of saliva is devastating to folks, although all of us cope with our own set of problems, and some do that quite well. I am guessing this happened because my oral under the tongue lesion was so small, and they went in the second time and took extra wide margins, finding no cancer. My mouth is still somewhat dry especially in the morning (my submandibular glands are gone), and I have to drink water to wash down my food, and it takes me an incredibly long time to eat. The mucositis is on part of my soft palate, and especially on the inside of my chin, if that makes sense, and I also have a spot that I feel when I swallow.
Not complaining, just reporting . . .

I am certainly coping with chemo much better, now that I know more what to expect from each and every medication. If I take Zofran I can get rid of my nausea and feel decent.

My MO is refering me to a speech pathologist because I have such tightness when I swallow (yet I can swallow). I probably need a little work on my enunciation as well. When I talk to my husband it is always, "what did you say," and part of that is that we think he is losing some hearing besides my slurred speech. Yeh, getting old.

I am slightly anemic and they have me on an iron pill; good news though as my hemoglobin and hematocrit go up each week.

My outlook on my disease has improved considerably. I finally realized I could not affect it one bit, except perhaps negatively, by worrying. When I got rid of that baggage, not exactly all by my own doing, my blood pressure and heart rate went down! As a result of that, I noticed I felt better in general.

I am using acquafor on my neck, which is taking the largest hit from radiation, and also on other spots on my face. Everyone here thinks I spend a lot of time on it, and I don't. So I don't know what's up with that. Maybe something about my skin?
I do tan easily without trying (I'm past those days)and seldom burn.

All in all, at this point I can't complain. Next week will unfold with possibly some new problems, but I am not going to play the anticipation game anymore, so I'll leave it there.

For those of you who know Jim Beers through this board, I had a fun text conversation with him, as I noticed he had an almost identical situation as mine. Made me feel great to communicate with someone who was doing well 2 years post treatment.

Best,
Anne

Hi Anne,

Just checking up on you. Sounds like you are doing great both medically and mentally. That's such great news.

Looking forward to some more upbeat posts.

Anne, keep up the positive attitude! Your 1/2 way finished, yea! Glad you connected with Jim Beers. Its always nice to meet others like yourself. Especially those who are a couple years out and doing great! Take it day by day, let the count down begin.

Christine,
Thanks! You are always so helpful and positive. It is hard to take it day by day (I always want to look ahead) but you are right it is the best way.
Anne

Thanks, Jerry! Nice to hear from you. There are a few "speed bumps" along the way, but it will be really good to say next Monday that I am 2/3 done (not to look ahead, but it crept into my mind just now).
Anne

Hi Anne-
I haven't been on here in a while, and it is great to see that you are doing so well.

I actually was able to return to work this past Tuesday. My RO is only letting me do six hour shifts for now instead of the usualy twelve. My coworkers and managers have been great in working with me-- in order for me to do six hour shifts someone else has to either change their schedule or do an extra six hours (I am embarrassed at this point to even admit I am a nurse after reading about some of the horrible nursing care others have been receiving-- it just makes me sick-- IMO, nursing schools today spend way too much time on nursing theories and other nonsense instead of patient care, critical thinking, and prioritizing!). Anyway, I felt like I was ready to jump right back in to my 12 hour shifts, but have to admit I came home pretty wiped out after the two six hour shifts I did this week. At least it was a start!

I hope you continue to do well!!
Susan

hoi

hi

Susan,
It is good to hear that you are doing so well! When did you finish your treatment?

So far I have been doing well. My chemo weekends are the worst for me. My radiation treatment is starting to kick in with reddened skin now. I am still eating meals and have no pain to speak of.

Everyone tells me radiation is culmulative and you feel the worst afterwards. Something to look forward to!

I know it will be hard for me to jump into school end of March. I've been gone so long. It is contest season & I left stuff for them to rehearse, so we will see. Also my middle school 7-8th are working on a musical. Again we'll see. Kids don't cut you the slack adults will. In fact, after 15 minutes they'll expect you to be 100 per cent.

I'd like to go part time next year. I doubt that I will be able to resume all 5 days all day at school this year right away also.

Anne

Gotta crawl before you can walk so listen to your body and don't over do it. This healing can and most likely will take all of 2 years with a ton of stuff going on in the back ground so to speak and without your knowledge or approval I might add.

Anne, if you're doing RT and chemo now my feeling is that you'd have to be a superwoman indeed to get back to work this semester. David is exactly correct. I personally wasn't ready to work for a full 6 months after the end of RT... and I didn't even have chemo.

Take it easy. Let your body heal. Let other people do things for YOU for a change. That way you'll be more ready in the fall.

How long till the end of RT?

d2

Hi,
Thanks for your comments, which have validity. I finish RT/Chemo Feb 25, thus 9 more days of treatments. I am feeling definitely "more rotten" at present. Everything tastes bad or metallic or both. My skin is very red now. I have more swelling. Still not too many sores. Very tired. Hope that any left over bad cells don't like it either.

Um, I think I have had the reputation for being a superwoman at work because my job is/was a hard one. This cannot be explained in a few words, so you'll just have to trust me on that one. In reality it is just because I keep on 'truckin, rather than having any special powers. Having said that, my health (and my family) will come before my job. If I can help my kids at school with contest on my terms, great, but I realize I cannot go at it like I would have to do in the past. I do have a great boss (superintendant)so I think he'll be understanding.

Let you know how the rest of it goes.
Anne

All my employees used to call me "Plastic Man" because I could work 24 hrs, get run over by a train and still bounce back up and work some more. Nothing seemed to phase me...until this Tx of course. Very barbaric is a mild way that I describe it. The healing takes far far longer than we would like but you just have to go w/ the flow.

I didn't realized you hadn't even finished Tx yet. Listen be very prepared as for a great many of us the few weeks POST Tx were our worse. Let's hope that's not the case for you but just in case you don't start feeling better after the rad ends, don't think it's unusual cause it's actually very usual.

Hang in there! I'm sure you have a lot of friends and family that love you, and keep you in their thoughts and prayers. I have a 26 year old daughter with squarmous cell carcinoma Stage 1. And I struggle with how to help her. So every night at the same time I have prayer time with my daughter at 8:30pm est. I will say a prayer for you too. God Bless you.

3910

Hi,
This is an update for me. I have 8 more radiation and 2 more chemo so am getting close to the end. I have done fairly well on things.

Last week my regular RO was gone so I saw another RO. I had noticed some pain in my neck, so asked about it, and to my surprise he found a small lymph node, BB sized, in my that area. However, I did not think there was pain from that spot. They made an ultrasound appointment for me which was today. Meanwhile, I could not find that lymph node over last weekend or into this week. My regular RO was back and he could not find it either, but said the thing to do was to do the ultrasound anyway, because someone did find something (I did feel it myself that day at my last week's appointment). The ultrasound showed a small lymph node in that area that was too small to be felt, so this was a relief, even though I'd been told not to stress by both of the RO's, mine and the substitute. The other areas they looked at were also normal. So that was excitement I could have skipped. I have noticed that my mask seems to fit much tighter than early on, and I have pains on both sides of neck and down on top of my clavicle bones, not related to skin sunburn, hours afterwards. I don't know what to do about this except to endure it.

My chemo last weekend was not pleasant, just felt bad in general, also felt more fatigue. As I related in an earlier post, my taste registers mostly metallic, with the exception of chocolate (did not used to be my favorite). I do not have a feeding tube as I am eating food, though I did drop a couple of pounds, probably partly because of my lousy weekend.

I did go to Laughter Yoga today, which is terrific. If anyone gets a chance to do this, I recommend it.

Anne

Sounds like you are doing well - I know that is doesn't sound like it or feel like it - but everything is relevant - you are still able to eat - and though tired - able to do yoga etc... So these are all pluses. Women in particular are notorious for pushing themselves to do more, feel better, etc.. You Are doing what you have to - you are almost at the end, that's fantastic. Best of luck to you and many blessings - it hasn't been easy for you but in time - hopefully it all will fade.

hi my name is gerry my husband is taking radition 12 today he has blisters now stared magic mouthwash sunday dr said to early to get blister how long was you on radition till you got blisters thanks gerry taking radition in his mouth ,had a very big tumor cancer cells are still around the nerve

Gerry - I recommend you start your own thread for this. Radiation blisters are very very common. I think mine began during the second week and continued until a good month after treatment ended.

Please give us more info on your husband's situation, ok?

And hang in there!

One of your new friends,
David 2

Hi Anne,

Dropped in today to check up on you. Seems like you handling it well, although you are reaching a more difficult stage.

I hope it doesn't get much worse. You ar a strong woman and are a great role model.

Jerry,
Thank you very much! I just had my final check-in with Dr. Ang, my RO. He thinks I am doing great. I have 5 rad treatments this week remaining (2 are tomorrow, 6 hours apart). I have chemo on Friday, then done. I think I have been lucky mostly about avoiding problems. We are in the process of scheduling the 6 week check-ups for everyone, trying to get them all in the same span of 2-3 days. No guarantees that everything has worked out like we want in terms of preventing recurrence, but the doc says my chances are good, and that time will tell. That is certainly true of life in general.

Let you know officially when I am done.
Anne

Good for you Anne - I'm rooting for your continued strength every day!

Anne-

Hi there! You have done so well!!! I am so happy for you that you are almost at the end. I know you will be glad to get back home. You will probably have a few more rough weeks once the treatment ends but you will make it through them too.

I saw my RO today. He says I can go back to 12 hour shifts next week, so I am glad about that. He wants to get a PET CT in three more weeks-- he says he likes to do one then to have a baseline. We'll see if my insurance approves it or not.

Hang in there-
Susan

I finished my radiation yesterday (Feb 25)and had my last chemo yesterday evening.

To my disappointment, but not surprise as I was warned here on this board as well as at the clinic, that I might feel worse afterwards, I certainly feel rough today. Might get better as I work through the affects of the recent chemo I guess. I have never felt really good over the weekends following chemo, or Monday, for that matter.

I noticed I had a tickle in my throat early on in the week. The RO said that was the radiation, and explained to me why/what was probably happening. I have a large scar on my throat over my larynx. It had to go there because my throat is skinnier than most. He had to make sure the scar area had plenty of radiation. So my throat (?)is affected like so many of yours. Swallowing is a problem. There is a burning pain. Plus I have more sores in my mouth.

So I got out the ammunition I had--the swish and swallow mouthwash, more soda and water gargling, etc. And the Carnation high calories drink.

There have been many times I did not feel good, but was able to make myself eat, etc. Guess I will be using those nutrition drinks now. I still have some saliva from my parotids, but it seems like my mouth is drier now than it was.

I think it is the swallowing difficulty that bugs me the most right now.

Anne

So glad you are finished and on your way to recovery - it sounds like it has been a long haul which I am facing starting in a few weeks. I anticiipate feeling like death warmed over and am not deluded into thinking this will be easy by any means - but you and so many others who've detailed your journey - help take the fear out of the unknown. I know that doesn't help with the pain and discomfort you are going through but I wanted to thank you regardless... And of course wish you much luck and comfort during the next couple of weeks. Many hugs to you.

Cheryl,
I wish you the best, too. For me the after treatment time is the worst, although the 6th week was tough too. Everyone is different, and they tend to custom fit our treatments so that is one reason why I guess. Hope you can take one day, or sometimes one hour at a time, to me that is important. Hard to always accomplish.

I now understand the agony of mouth sores while struggling with neck radiation skin burn. This too shall pass.
Anne