Am I Being Fooled?

I am a little worried that "if it seems too good to be true, then it is" is happening.  Let me explain.

Today my father completed his first week of radiation for base of tongue SCC, with one chemo treatment on Tuesday.  He has had no side effects at all.  I would like to think it's going to stay this way.

However, a friend of mine who is a breast cancer survivor, said to me yesterday after I told her that he seems to be doing well, "Just give him time."  And then she described some of the general effects of radiation.

Is it usually true that the first week or two of radiation go pretty well, only to start having side effects around week 3?

I would appreciate your knowledge of or experience with this.

Thank you.

Maggie

Hi,

I had 6-1/2 weeks of radiation treatment with weekly concurrent chemo with Cisplatin and Erbitux.

Yes, the side effects will build up over time - and feeling good after the first week means nothing with regard to what is to come.  Everyone takes the treatment differently, but here are some of the issues I had to deal as treatment progressed:

1.  Nausea:  I also had daily Ethyol shots, which really seemed to make me more nauseous than the chemo.  I took Zofran 3 times per day, and it worked well (not forgetting that anti-nausea drugs are also provided with the chemo).

2.  Loss of taste:  This is more difficult than it sounds as food actually tastes horrible.  I settled on a meal (which I ate 3 times per day) of egg-beaters with cheese (and sometimes ham), 2 Boost Plus, and tea with honey - about 2700 calories per day.  Eating and drinking water are critical - a lot of people lose a lot of weight (many get a PEG prior to treatment, or during treatment if they cannot keep up their weight - I did not get a PEG and lost only a few pounds).

4.  Very sore throat:  This was a big problem which also made eating difficult.  I got a mouthwash concoction from my dentist (who specialized in radiation treatment patients) which I took before each meal to numb my mouth and throat to help me eat.  I also took a Tylenol-codeine mixture which helped quite a bit.

3.  Thrush:  I got this twice, and was readily treated.

4.  Canker sores: I got a little bit of this and used a topical treatment.

5.  Thickening of saliva:  I didn't get this too bad, but some do.

6.  Constipation:  At the end of treatment this was a big problem.

7.  General lack of energy:  the treatment just kind of wore me out over time.

8.  Radiation burns on outside of neck:  These showed up late in treatment and really blossomed after treatment was over (if I recall, it was thought the Erbitux contributed to the severity of the burns).

9.  Pimples:  The Erbitux caused a huge outbreak of pimples on my chest, upper back, and worst of all on my face (even inside my nose).  Steroids and antibiotics took care of them.

It wasn't until about 3 weeks or so post treatment that I started climbing out of the impacts of treatment.  It was a slow road after that, but within a couple of months I was doing pretty well.  I also kept exercising during treatment, including almost daily walks (nothing too strenuous, though, due to concerns about burning too many calories), which I think helped not only physically but emotionally.

It is key to tell the doctor or nurse about each side effect that occurs and to understand that the first remedy prescribed my not work well (we're all different) - if something doesn't work, try something else until you get the best result.

Anyway, I think that's the highlights. The treatment is tough, but doable.

Best wishes,

Chris

On 8/3/2007 Chrismd wrote:

Hi,

I had 6-1/2 weeks of radiation treatment with weekly concurrent chemo with Cisplatin and Erbitux.

Yes, the side effects will build up over time - and feeling good after the first week means nothing with regard to what is to come.  Everyone takes the treatment differently, but here are some of the issues I had to deal as treatment progressed:

1.  Nausea:  I also had daily Ethyol shots, which really seemed to make me more nauseous than the chemo.  I took Zofran 3 times per day, and it worked well (not forgetting that anti-nausea drugs are also provided with the chemo).

2.  Loss of taste:  This is more difficult than it sounds as food actually tastes horrible.  I settled on a meal (which I ate 3 times per day) of egg-beaters with cheese (and sometimes ham), 2 Boost Plus, and tea with honey - about 2700 calories per day.  Eating and drinking water are critical - a lot of people lose a lot of weight (many get a PEG prior to treatment, or during treatment if they cannot keep up their weight - I did not get a PEG and lost only a few pounds).

4.  Very sore throat:  This was a big problem which also made eating difficult.  I got a mouthwash concoction from my dentist (who specialized in radiation treatment patients) which I took before each meal to numb my mouth and throat to help me eat.  I also took a Tylenol-codeine mixture which helped quite a bit.

3.  Thrush:  I got this twice, and was readily treated.

4.  Canker sores: I got a little bit of this and used a topical treatment.

5.  Thickening of saliva:  I didn't get this too bad, but some do.

6.  Constipation:  At the end of treatment this was a big problem.

7.  General lack of energy:  the treatment just kind of wore me out over time.

8.  Radiation burns on outside of neck:  These showed up late in treatment and really blossomed after treatment was over (if I recall, it was thought the Erbitux contributed to the severity of the burns).

9.  Pimples:  The Erbitux caused a huge outbreak of pimples on my chest, upper back, and worst of all on my face (even inside my nose).  Steroids and antibiotics took care of them.

It wasn't until about 3 weeks or so post treatment that I started climbing out of the impacts of treatment.  It was a slow road after that, but within a couple of months I was doing pretty well.  I also kept exercising during treatment, including almost daily walks (nothing too strenuous, though, due to concerns about burning too many calories), which I think helped not only physically but emotionally.

It is key to tell the doctor or nurse about each side effect that occurs and to understand that the first remedy prescribed my not work well (we're all different) - if something doesn't work, try something else until you get the best result.

Anyway, I think that's the highlights. The treatment is tough, but doable.

Best wishes,

Chris

Thank you so much, Chris.  This is what I needed to hear, not that it's pleasant, of course, but I want information so as to know what to expect and approximately when.  You have been very helpful.

I just found out tonight from my father's caretaker that he did not drink his Boost Plus today.  He told me it's because he can't chew due to an ill-fitting partial (which he's going to have adjusted).  However, he also did not eat the applesauce which was given him either.  Now, Boost and applesauce do not need to be chewed, so I suspect that he is having some swallowing and/or throat problems already and just not telling me.

His caretaker keeps a watch as to whether food that was set out for him is eaten, not eaten, put back into the refrigerator, or what.  She is so careful about this, but my father is telling me it's all due to inability to chew.  He couldn't manage scrambled eggs, either.

Well, thank you very much for taking the time to respond to me in two replies.  I really appreciate it.

Maggie

Hi Maggie,

I'm ending week one and feel great!  I know and have been told it won't last, they said after about two weeks also.  It's really good that someone is watching the amounts your father is eating, especially if he's elderly. 

Good Luck and I hope everything turns out good for your father and you.

Terry

Hi Maggie,

A couple of more things from my experience:

First, the mouthwash I described above (the so-called "magic mouthwash") is very important for eating (it numbs the mouth and throat just long enough to eat).

Second, I used a gargle of 1/8 tsp each of salt and baking soda 2 or 3 times a day - this helps minimize some of the mouth issues.

Also, eating was one of the biggest areas of dispute between my wife (who was my wonderful, wonderful caregiver) and I.  It's hard to understand the eating problem unless you have gone through it.  My wife tried everything, and nothing worked - we had some really ugly arguments about eating until I came up with the simple meal I described previously, then all was well.

Finally, sometimes we are our own worst enemies.  I wouldn't admit my throat was getting really sore, so my wife asked my RO to bring up the issue - and I accepted the Tylenol-codeine prescription (which I wouldn't ask for based on my wife's recommendation, but would from the doctor - I was such a blockhead).

Take care,

Chris

On 8/3/2007 Memah wrote:

I am a little worried that "if it seems too good to be true, then it is" is happening.  Let me explain.

Today my father completed his first week of radiation for base of tongue SCC, with one chemo treatment on Tuesday.  He has had no side effects at all.  I would like to think it's going to stay this way.

However, a friend of mine who is a breast cancer survivor, said to me yesterday after I told her that he seems to be doing well, "Just give him time."  And then she described some of the general effects of radiation.

Is it usually true that the first week or two of radiation go pretty well, only to start having side effects around week 3?

I would appreciate your knowledge of or experience with this.

Thank you.

Maggie

My husband just finished 9 long weeks of chemo (cisplatin) and radiation.  He was forced to take a very aggressive stand against his stage 4 tonsillar cancer.  Other than the first three days of radiation treatments he had 2 rads a day for 5 days a week for the 9 + weeks..  We figured he had 89 -90 treatments. 

The good news:  he is now one week out of treatment and is doing well.  He is a slim 100 pounds BUT has continued to eat and drink by mouth,  In fact, we had his PEG insertion cancelled since he was accepting treatment so well.

He did suffer with some side effects, constipation was the worst for him, he has maintained a good level of saliva (kinda awsome to see this rednect man spit these days!).  He is tired and rests a lot BUT he worked all the way through these treatments, granted not full days but he owns his own business and worked.  

His speech is the hardest hit, I can understand most of what he says but on the phone there is no way to know what he is saying.  Not many people have the patience to understand him.

Now.. what you have to realize is that everyone reacts to treatments differently.  95% of patients could not tolerate the treatment we went through but we are DERN proud to be in that 5% that did.

Next for us is a surgical consult next week at the MD Anderson in Orlando.  He was not originally a surgical candidate but post radiochemo treatment he has still a large mass in his left tonsil.

The chance to live is what drives him (and US for that matter) and we are willing to do whatever it takes to get past this event in our lives.