Hi Janet & Andrea, my last blood work was about 2 weeks ago at the Drs in NY. I have a new order for more labs that I will try to get done this weekend.

My labs last time showed very low WBC (1.3)? and low Potassium, Magnesium, and something else.

I would conider anti-depressants, but right now, I am trying to take a "medicine holiday" for a little while. I got so sick of taking meds for everything!

At this point I'm doing pretty well, Thursdays brain scan was clear and I just finished chemo #6. From what I've read Erbitux has not really prolonged life, so we are sticking with proven drugs. He will give me anything that has shown any success and I may try a clinical trial. Just so you understand, my treatments have been chosen with QOL as the primary issue and at my behest. I have no desire to live 6 miserable months when I can live 3 good months. I have no shortness of breath and, except for a few lost pounds, no outward indication of illness. That is the way I choose to live and I'll see how this current treatment worked before I make any other choices. I appreciate your concern and Hope all goes well for you. As for me, I will conduct my life like as I have for 3 years, like I'll live forever. It is a lesson my dad taught me.

Michael, I too was exhausted for about four weeks after the end of rad and spent muchof my time sleeping. Its OK. You get to do that. This treatment is hell and your body needs that rest to heal. I also was very anemic for a while, which didn't help.

If soy milk and dairy leave you cold in terms of drinking something, here's my recommendation: green or white tea with a light fruit flavor. Celestial Seasonings has a couple of new white tea blends. First, the stuff in green tea (and by extension white tea I think) is supposed to help prevent new cancer cells and I found it was the first thing that didn't taste really bad to me. It also has a slightly drying effect on your mouth. I have had to cut back on it recently because now my problem is mainly severe drymouth but when I still was dealing with major phlegm it seemed to nicely cut through it a little and the pear or peach or honeydew flavor (there is a bottled brand our health food store sells with ahoneydew juice added and its my fave) left my mouth feeling fresher.

Also, don't forget Mucinex or Tussin with Gaufenisin--that stuff does really help when phlegm is bad.

Hi Michael --

There have been several things found to imporve fatigue in cancer patients. One is making sure you are not anemic (assume you are being checked for this, cisplatin is a powerful myelosuppressent) Another is moderate exercise during radiation treatment -- I know, hard to do but apparently really makes a difference. A third is supplementation with the amino acid l-carnitine -- it has been shown in some medical studies to improve "cancer fatigue" not related to anemia. For example, a paper presented at 2004 ASCO found that supplementation with l-carnitine* improved fatigue, mood, & sleep in some cancer patients after only a week's supplementaion wih doses from 250-1250 mg/day, with no adverse effects. This amino acid is incorporated into most of the liquid formulae that are used (e.g. Boost, Nutren etc.) and this should be checked to estimate your daily dose from this source before any additional supplementation. You can get liquid l-carnitine at health food stores. Barry takes 500 mg/day and has been for several weeks and thinks it may have helped him avoid the most serious fatigue. Our RO and nurse had no problem with this amount.

I second Nelie's suggestion on the teas -- unfortunately Barry scoffs as he is a Brit and will not touch cold tea (or green tea for that matter, except in a pill!)

Gail

*L-carnitine supplementation in cancer patiens with fatigue and carnitine deficiency

Cruciani et al. 2004 J. Clin. Oncol. Vol 22(14s)

Hi Michael,
Glen has given you some excellent advice, listen to him.
I would suffer radiation treatment again before I would endure the 2 months after radiation ended. The better I felt physically, the further down I fell emotionally. I hadn't found this website yet so didn't understand how normal it was to fall into a depression at this stage in treatment. The thought of dying took over me, I couldn't go a full minute without thinking of it. I cried all the time and felt like I had gone through all that treatment just to spend the rest of my life waiting to die from this cancer. Then I found this website, it was a month or so before a hurricane hit our area that took out our power for over a week. I read a post from Digitex (Danny) and he talked about depression and how he began to take a walk EVERY day. I started that and between that and this site I was soon on my way to being emotionally better off. My husband was so happy with my change of emotional state that when our power went out, we didn't "rough" it out like our neighbors, he spent money we didn't have on a generator so I could stay on this website. Take a walk every day Michael, take a baby step with your eating every day, but remember to measure your progress in weekly or even bi-weekly increments. If you try to do it daily you will get upset with what seems like slow progress.
You cannot lie in bed, you will only get worse, I can promise you that.
Also, MAKE yourself sip water throughout the day. While not everyone who doesn't eat during radiation loses their swallowing, it will do you good to keep your swallowing up to par. I sipped water from about the 3rd week of radiation until a few months afterwards. That was ALL I took by mouth and my swallowing is fine. Drinking the water will also make you feel more normal.
Wishing you well,
Minnie

MASSIVE DEPRESSION...Wow!!

It's really hitting me. I break down in tears several times a day...I can't control myself...

I think that during the selection, and then subsequent treatment, one is so focused on the task that once it's done, it's almost anti-climatic.

It just feels like I'm waiting. Almost like I went through this whole thing as just a waste, an exercise in futility.

I know this is not really true, but it feels so over now.

This is normal. I went through the same thing after my treatment ended. I felt like I would not live to see my daughter graduate, get married, or even grow up.
It will get better. It just takes time. Try to remember how strong you are. You will make it through this just as you have everything else.

Michael,
Depression is a waiting feeling but it can be a waiting for a "something new". While your heart waits, I hope for you that this depression eases soon. I hope each day, you fight to name one small thing you notice outside yourself that speaks to you of life and mystery.
Prayers for healing,
Janet

I think I'm just getting sick of it all...!

I am so so so sick of the spit..At least I'm talking a little again, and I'll try swallowing more today.

I don't understand the mechanics of what's going on.

Why all the spit? I thought I should expect 'less' saliva? Usually I can sleep a few hours without problem, what happens then?

How long until the taste buds return? Everything tastes like crap!!

It's getting OLD

Michael,

My mom had exactly the same feeling. Her recovery took a really long time and she never took anti depressants even though I begged her to. She didn't smile and it was like she just went through the motions of life without enjoying anything. The spit just kept coming for her too but soon that will start to subside. It really took about 6 months for her to start to feel somewhat normal.
It was so tough for a long time but now she can eat practically everything and she looks just like her old self (only 20 pounds lighter.) Her taste came back after about a month but she didn't eat much for at least six months. She lived on high calorie shakes that somebody on this website gave me the recipe for. She said without those shakes she doesn't know how she could have made it. I honestly think that her recovery took so long because she wasn't getting proper nutrition. Things will start to get better soon but it is definately a verrry slow process...Take care.

Hugs,
Dani