"Peter" wrote :
"7/6/07
I just returned from my 15th of 35 RT sessions. Pain in the 3 - 5 level
is pretty continuous at this point. Haven't been able to swallow
anything solid for 3 days now. Tongue feels inflamed and very sensitive
to hot or cold. Can swallow liquids, boost,ensure, but it hurts.
Re-evaluating the feeding tube. Dr. says Gastrojejunal (GJ) tube instead
of PEG tube, don't know why.
I'll discuss it with my wife tonight, and do as she recommends.
Looking forward to getting to the bottom of this pit so I can start my
way back up."
Hi Peter,
I have been following your posts; I am 63, male, never-smoker, non-drinker,
primary tumor at base of tongue squamous cell carcinoma, 3cm. on diagnosis
by CT scan in January of this year. Lymph node involvement right side. But
my SCC was "fully" differentiated compared to yours being "poorly
differentiated." Lung scan, bone scan, clean.
I had two major four-day chemo sessions in hospital on drugs quite similar
to yours ?:
Taxotere, 5-FU, CISPlatin. I understand CISPlatin is much
stronger than the CarboPlatin you received. After each of those sessions
(separated by two weeks) the side-effects of fatigue and nausea really
kicked in on the fourth day or so after the treatment. Of course I lost my
hair, appetite, sense of taste. I began losing more weight quickly.
During my 35 radiation sessions I received CarboPlatin 1 hour IV treatments
three times. The nausea and fatigue seemed even worse than the heavy-duty 4
days session after-effects, but I believe that was a cumulative effect of
all the treatments. Again the worst effects kicked in around three to four
days after the chemo was over.
About the point you are at now, 15 radiation treatments in to the series,
really major fatigue and weakness began to kick in, and weight loss
accellerated even further. Like you I was in constant aching in the mouth
and my tongue felt swollen (it was), and the inside of my mouth ulcerated.
All they were giving me at this point was dexasone and a multi-vitamin.
10 treatments later the pain got so bad I asked for something and received
fentanyl patches which I used for almost four weeks. It really went "against
my grain" to use these since my history with opiates has been one of not
liking them and their having a "stimulating" effect on me, like getting
wired on too much coffee.
At this point I should have been forcing myself to do what I am doing now :
drink 2 liters of soy milk per day with each liter reinforced by enough
Ensure Optimum (Nestle, contains proteins and vitamins, and carbs) to make
sure I am gaining weight and strength. But by that point the lack of
appetite had turned into a positive "revulsion" against all food : even
clear bottled water tasted to me like it was contaminated with blood and
oil.
By that time I had found out that the PEG tube could have been done under
local anesthesia at a hospital in Bangkok (I am in Chiang Mai), but I felt I
did not dare try and travel in the condition I was in, and I felt,
instinctively, that anything running down my nose and through my throat
would be intolerable.
Looking back, with hindsight, I wish my RO had told me I needed a tube and
it must be inserted before chemo so you can be using it when combined chemo
and radiation and weight loss really are contributing to your being very
sick.
But no one did inform me. If I knew someone now with a lower tongue tumor,
about to go through the type of treatment you and I have been through, I
would tell them they were "crazy" not to have a PEG tube put in. But I do
recognize some people seem to do relatively better ... I know a guy with
laryngeal cancer here who's gaining weight while on chemo and radiation !
I really understand what you mean when you say the "bottom of the pit," and
I am sorry to tell you that in my case the ascent from the pit did not begin
until 5 weeks after the last chemo and radiation treatment. I pray your
experience will be better than mine. I am happy to share with you that weeks
6-8 post-chemo/radiation has brought me remarkable improvements and maybe
10% of my sense of taste back, much greater ability to swallow, ability to
eat with some enjoyment a much wider range of (still soft, still not spicey
or salty) foods including steamed, baked, or even grilled fish.
Fatigue and weariness are still with me one day out of three or four and are
probably related to the fact that on the three or four days I am feeling so
much better I am doing too many things, tying up the loose ends of an Asian
Arts and Antiques business that's been neglected for six months, fixing all
kinds of things around the house, even building a new "Buddhist shrine"
(Thai 'sanphraphum') beneath a cactus plant the neighbors cut down and which
I saved and which has grown remarkably in four months in its new "home." So
every third or fourth day I am down for the count all day.
Viva Soi Milk and Protein supplements !
take care, Uncle Sally
Peter update 
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