I have to know what a person feels when getting both the treatments.

Do you feel pain? What? someone please tell me what you feel with each one.

Isn't there anyone who can tell me?

Ann Marie...I can promise you that you will have plenty of answers soon. Nearly everybody on this forum has had radiation and chemo (exc. for me and sev. others) and there is a great deal of information contained in archived messages. DavidCPA recently listed a very frank summary of how radiation goes. Do a search for his entries.

Good Luck! When do you begin? It must be quite unpleasant, but everybody gets through it and comes out the other side. Look at the upbeat, positive people who write here every day. Nearly all of them have had radiation and chemo.

Ann Marie,

I have no first-hand experience with chemo, so hopefully others will comment on that part of it. You don't actually "feel" anything during the radiation treatments -- what you eventually feel is the cumulative effect of multiple treatments (it's pretty typical to start having some side effects like strange taste and some burning on the skin after a couple of weeks, and mouth sores and swallowing problems at some point after that). After about the midpoint of radiation, you can become especially susceptible to thrush in your mouth, which is really painful, so it's important for your medical team to be on the lookout for that as well.

When the more severe effects show up, you feel less and less like eating, so it's important to try to stay ahead of the game and get plenty of nutrition and hydration while it's still relatively easy to do so.

Cathy

Hi Anne Marie,

Here's my experience:

The radiation itself as it came out of the machine was annoying (the machine noises drove me nuts and being confined in the mask was occasionally unnerving), but not painful. The side effects grew with time as the mouth, tongue, and throat got more and more sore. Eating became very difficult due to pain and taste buds going bad (it's not just that I couldn't taste, but things tasted horrible - most of my diet became Boost Plus). There were pain killers (e.g., magic mouthwash which was a compound mouthwash prescibed by my dentist; also tylenol-with-codeine syrup), antibiotics, and mouth rinse (baking soda and salt) which helped with pain and infection (thrush was typical, and I got it twice; also some, but not a lot of, canker sores). I was fortunate to be able to eat by mouth the entire time (no PEG).

My chemo caused a little nausea, but not a lot. The anti-nausea drugs given at the time of the chemo worked fine for me. The Zofran discussed below also helped. So overall, the chemo was just sitting in a chair getting the stuff dripped in - playing cards and dominoes with my wife, sleeping, chit-chatting with nurses and other patients, and listening to my MP3 player.

The daily Ethyol shots also made me a little nauseous, but again, the Zofran helped a lot.

I never vomitted during treatment or otherwise. I also never got used to getting poked with needles, and still don't like them. I did get more worn out as time went on, and slept a lot.

The Erbitux caused a hugh outbreak of pimples all over my face and upper torso. The face pimples made the radiation mask quite uncomfortable. Steroids, as well as topical and oral antibiotics cleared them up pretty well (although even now I still get a few).

After treatment, I developed large scabs on the front of my neck (both sides, and a little bit on the back of my neck), thought to have been aggravated by Erbitux - these really bad scabs cleared up after a couple of weeks or so (I treated them with Aloe, then Vitamin E cream).

Kind of rambling, but that's my experience, which I also discuss in some my other posts. The treatments themselves were not painful, but the side effects piled up over time and were at best quite uncomfortable - definitely a difficult time but survivable. You can see posts by others whose experience was very different (and often worse) compared to mine.

Good luck, and remember that you need to always tell your doctors and nurses any time something doesn't feel so good - and be prepared to try different remedies when the first one doesn't work as well as intended. Also, if you have an idea about what might work for a problem, tell your doctor - my wife (caregiver) did this and really helped me out. Caregivers are great people and oh so helpful!!!

By the way, I was also 52 at the time of treatment.

Best wishes,

Chris

Ann Marie,

I'm not sure that there is any one "blanket" answer to this question as it seems that everyone reacts differently. Personally, I "felt" nothing with each visit on the radiation table, 5 days a week for 7 weeks. Each treatment took about 10 to 12 minutes once my mask/head was secured to the table and actual treatment began. In my case, the machine (for lack of better term) ventured around into a total of 12 different positions around my head and neck area. I can recall seeing bright red lights glaring as the ray was actually being administered but nothing was felt. I found it best in my case to just keep my eyes closed during the process each day. There were 2 or 3 days involved overall to where the complete stay on the table came to 20 minutes or so. That was because ever so often they took new photos of some type (as I was told) to monitor the treatment progress. I did not particularly care for those days due to the extended stay on the table with the mask on and secured to the table for the extended amount of time. You should have an opportunity to go through a "dry run" as they did with me once your mask is made. They did it with me just to make sure I would feel comfortable on the table with the mask secured. I was told that it was not uncommon for a patient to suffer a bit of claustrophobia with the mask on but they will provide you with the necessary meds to ease any such happening.

Chemo was pretty much the same way. In may case each round was simply an extended tour in a large comfortable recliner type chair with an IV needle secured in place. My drill involved a total of about 6 hours total in the chair as various bags of fluid and injections of this and that were administered. I recall being advised of what type of effects I might expect within the following 24 to 72 hours following each chemo round but only minimal signs popped up in my case. Perhaps nausea was the worst side effect to bother me but they will see to it that you have meds to help control that.

Believe me, it is not a big deal. The worst part overall is the cumulative effect as mentioned above and in my case I just felt really "crappy" for a total of probably 4 weeks, last couple in Tx and first couple post Tx..

Bill D.

I think everyone reacts different.
I got sick from the first Chemo You feel nothing as they load you up, sickness was like a bad flu
They tried alot of different meds, came up with I can,t recall that help some. The Radiations I was OK till about 18. I got thru it one thing I remember best my DR. said we will help you get thru this, and they did. I talked to few people that went thru it before me, the one thing I wish I would of done was the peg, I did not and it took longer for me to recover. I remember reading Lance Armstrong book while I was getting my first chemo, I never put it down till I was done. Good luck

Hello Ann Marie,
I'm not sure whatI can add to the replies so far, but I just wanted to wish you every best wish for your treatment.
I am six weeks post treatment for scc of my tongue. The radiotherapy and chemo were not as bad as I'd feared:) Neither treatemnt hurt at all, there was, however, a lot of hanging around at the hospital! I had cisplatin, weekly for 6 weeks and had no nausea at all. The nurse told me that if I took my anti nausea meds as advised, all would be well and it was! (She said that if I was sick they could give me other meds)
As far as the radiotherapy went, I was nervous as I don't like confined spaces. However, I decided to tell myself that this was healing me and that helped as I lay under the mask - I suppose I amde myself welcome the treatment, rather than dread it. The few times I did feel a little tense, I imagined my various relatives and friends were in the room dancing madly to the dodgy music which was piped through the room. Silly but it helped.
The first two or three weeks after treatment were the most difficult, as I was very tired, it hurt to eat and I had a lot of mucus. That passed and I can honestly say that it was of course worth it.
We all respond differently and I'm sure that most people will admit that at times treatment is difficult, but you can do it, just as we have - I never would have thought I could cope as I am a bit of a coward really, but the support of my family, friends and everyone here helped me every step of the way- even on the days when I felt like the grumpiest woman in the world!
Ah, I see I have rambled on after all...Sorry!
Take care
Georgia

Am 07,

I posted this shortly after my concurrent chemo rad Tx.

Hope this may help you in your journey through the dark tunnel. You will emerge.


Before I start they say that everyone can react differently to the same Tx but my experience in reading 1000's of posts from fellow patients is that we all have bad side effects but some have it worse than others. Judging by my readings I fared better than most and I think my somewhat nasty disposition helped me when I needed it most. That said......

It was probably the worst concentrated time in my life, both physically and mentally. I think the mental part is at least 50% of the battle. If you think about it, your neck region is the worst place you could be radiated. They tell you that you must (AND YOU MUST) drink at least 48 ozs water and 2000 cals each and every day. Then they burn your throat so you can't swallow or even eventually talk. So then they give you pain meds but the pain meds make you nauseated so they give you nausea meds and even they sometimes make you nauseated. All the while the chemo makes you nauseated. I also opted for no tube and I'm glad I did but it made it sometimes impossible to meet the daily goals. They basically set you up so that you can't win this battle but you will find your own way that works for you. The nausea was my worst enemy and they couldn't find anything that worked for me. I could open up a small drug store with the meds I filled and took one or two pills. At the end I finally had had enough and stopped taking all meds. I swallowed with the pain but at least I stopped the nausea. My nausea got so bad that it was easier to throw up than to breath so even after I stopped all my meds I went weeks fighting a gag reflex every time I swallowed something. Sometimes I literally held my mouth shut after swallowing just so I wouldn't throw up. It was nasty but that's what saved me and got me over the hump, so to speak.

Here's what basically will transpire:

The chemo may make you sick. The first bag I rec'd had no effect on me but the last 2 hit me hard. That may have had something to do with the weeks of rad I had rec'd by the time I got the last 2 bags, I don't know.

The rad will not effect you until around the 3rd week. Your taste will rapidly go away. At first things tasted bitter, then nothing, then I could taste some sweetness but not all. To this day choc tastes bitter.

Your throat will get sore and you will soon be on soft foods and liquids. REMEMBER your goal is to drink water (48ozs for me) and "food" (2000cals for me) each and every day. They will tell you and your caring friends and relatives will tell you all sorts of things to try. I found Carnation Instant Breakfast VHC which has 560 nutritionally balanced cals in a 8 oz can. That meant I only had to swallow 4 cans of the VHC to meet my daily goal. A life saver when your throat burns like hell. Unfortunately I didn't discover the VHC until 2 weeks AFTER my Tx ended but I'm glad I did and I still use it.

You will be given all sorts of meds to combat the pain and nausea. Don't give up if at first they don't work. Good luck on finding the correct combo.

I did not keep up with my daily water and "food" because of the nausea and then I would get dehydrated and then constipated. Guess what the side effects of those are...Nausea. I ended up in the ER 3 times to get IV fluids. Don't think your body will go for days with little or no food and water while being attacked with rad and chemo without shutting down. Your body will shut down if you don't feed and hydrate it so do your very best to keep up. I found that a lot of people visited the ER during Tx.

I lost hearing in the high frequency range due to the cisplatium and I have been told it's probably permanent.

I lost some hair on the back of my head and I won't have to shave below my chin ever again. I don't have fair skin so the outside of my face and neck faired a lot better than most re sunburn.

Your saliva will began to shut down and thick mucus will increase. I went for a few weeks trying to spit out the thick stuff with no thin stuff to help. I would wake up choking on the thick stuff and when I went to spit it out I would start to gag and then get nauseated. The thick stuff will become less of a problem as the dry mouth becomes more of a problem.

You will start to get really weak and may sleep or just feel like lying around. I stopped working all together for about 6 weeks and just laid in bed all day. Really boring time but I just didn't have any energy and I had the pain, nausea, dehydration and constipation, etc. Your strength is zapped as well. Taking a shower was equal to running a marathon. I stopped driving and really became very anti social. I just didn't want to be around anyone except my wife who as my caregiver and business partner I credit for saving my life. There is no way I could have gone through Tx without her. She gave me the caring love and the tough love when I needed it.

I lost 30% of my body weight and I couldn't afford to loose anything. I was very physically fit going into Tx. Nonsmoker, casual drinker and exercise nut. I road my bike 100 miles a week avg 20 mph with bike clubs but the TX still clubbed me over the head.

I felt like I was in a dark tunnel and I didn't come out of that tunnel until the 3rd week AFTER Tx ended. That's when I started to drink 3000 cals a day and started to feel almost human. My strength took several months to come back. My taste is almost tolerable but the dry mouth is still horrendous.

I am just 4 months out and am able to work from 9 to appx 7:30. Not as much as I used to but better than most at my stage. I am mentally pretty much back to normal and my nasty disposition has come back but I'm not as nasty anymore. When you hit the bottom which I did more than a few times I made many promises and I am trying to keep them. This is a humbling experience.

Again, you may have more or less problems with everything I mentioned but overall those are the main side hurdles you will face.

Questions ?