I finally got the all clear on my infection wound to start radiation on July 9. So far I've had 4 sessions and they seem fine. I also had my first chemo on July 10 with cisplatin. They gave me several anti-nausea drugs and electrolytes before putting in the brown chemo bag. The following morning my face and body were all swollen, but not as bad as when I got the contrast dye for CT. I felt some nausea on Wednesday and lost my appetite. After breakfast at 8 am, I felt full all day. Finally I had to force myself to have half of my normal meal at 8 pm. Today, I still have the same feeling but much less pronounced. I was hiccuping all day yesterday, not fun but beats throwing up. Every time I try to drink something through my mouth, I feel like I want to throw up. So I hydrate myself using the G-tube. Seems to be working so far. They prescribed 2 days worth of anti nausea drugs and I have been taking them religiously. So far it has been keeping the nausea largely at bay. Tomorrow I will finish the drugs. There is a back up drug I take only if I need to. So far so good.

I also felt more tired than usual after the chemo, had to take a few naps a day. I guess it is a normal reaction.

I've heard from various people that the second chemo is going to be much more challenging. Is this true? I will be getting mine in 3 weeks.

Joseph

I found it the same throughout... But everyone is if fervent - if you can't drink at least continue to rinse, and dry swallow - hugs!

It is very normal to be tired and want the naps!! Take them. You are now in fight mode so remember to baby yourself. rest, rest, rest!
Kevin actually did a little better with the second round of chemo. Not sure why, maybe because we knew what to expect? Maybe because we were in total battle mode by then? He did randomly vomit. It was fine one minute and the next he would hug the toilet for a bit. Then he would be fine again. Often times there was no warning, just wham!
Glad you are on your way in the battle. Keep us updated and know that no matter what you are going through, one of us has gone through it too, so keep asking questions.
Blessings,
Kathy

With Cisplatin it is a cumulative effect like radiation so the side effects are going to become more intense the farther into treatment you go.

Here is a great article from Consumer Reports pertaining to anti nausea meds for the cancer patient, a very good read.
http://www.consumerreports.org/heal...drugs/Drugs_to_Treat_Nausea_Vomiting.pdf

It does list Cisplatin, as having a high rate of nausea and vomiting risk, something that is amplified with radiation. The nausea will get worse as you are ramping up on the pain medications as the opiates also cause nausea and vomiting as well.

"An excerpt:the evidence that is available indicates that granisetron, ondansetron, and palonosetron help alleviate those conditions in 47 percent to 62 percent of the peo- ple. Only granisetron and ondansetron are avail- able as pills, and the evidence does not indicate that one drug in pill form is clearly superior to another in this class. So again, we would recom- mend generic ondansetron tablets based on cost.
Radiation-induced nausea and vomiting
Both granisetron and ondansetron have been shown to be similarly effective in preventing nau- sea and vomiting following radiation therapy for cancer. Generic ondansetron tablets would save you $50 or more over granisetron, so we recom- mend it as our Best Buy choice if you�re undergo- ing radiation therapy and your doctor has decided that an antiemetic is appropriate for your situation."

One thing that the article states is that Ginger has been used favorably to ease nausea in studies as well. I will testify to the effectiveness of this however I wouldn't recommend this for anyone in treatment as Ginger is also a natural blood thinner and can have interactions with other medications, as will other herbs and natural remedies so talk to your Oncologist before exploring natural alternatives.

What we've noticed on the boards is that those patients who've focused on hydration and nutrition have an easier (relatively speaking) time through treatment and seem to "hold up" better. Hydrating is going to ease the nausea and help reduce the strain to your kidneys that all of these drugs are causing.

To emphasize the importance of nutrition, over 20% o all cancer patients die of malnutrition, not the cancer or treatment of. My guess is that that figure is most certainly higher in Oral Cancer patients due to the nature of our disease and the difficulty of delivering said nutrition. Due to the bodies natural response to both the cancer and the stress associated with the cancer experience your body is already not absorbing nutrients the way it should and is being put into a hyper metabolic state trying to heal itself from the effects of treatment. This creates a dangerous situation and usually leads to cachexia, or cancer related wasting syndrome where the body begins to catabolize it's lean muscle mass into energy and amino acids to throw at the immune response.

The hormones that trigger the immune response in the body also have the unfortunate side effect of reducing digestion and absorption, in addition the bodies cortisol levels become elevated (the hormone the body produces as a reaction to stress) furthering digestion/absorption issues as it counteracts insulin which is important in the metabolism of carbohydrates and fats for energy. To add to the problem, most of the medications that are prescribed to the cancer patient also constrain testosterone levels (opiates, anti-depressants etc) which is important in maintaining lean muscle mass and protein synthesis in the body.

So, the question is what steps can we take to give ourselves the best chance at surviving treatment and the effects of cancer? The few things we can control and the most important really after choosing our medical professionals is our attitude and our nutrition.

There are few ways outside of the harsh drugs used to treat Cushings Syndrome to control Cortisol in the body, however the ways to do it are easy stress management techniques. Stretching (I love Yoga or Tai Chi), walks, music, deep breathing, prayer, meditation, reading, movies etc. Your bodies cortisol is highest in the morning, lowering it then helps control it throughout the day so do something before you start the day to relax and lower your cortisol.

Limit your caffeine intake as well as it boosts cortisol, and can hinder sleep patterns, an issue you'll have also due to opiates (insomnia is a common side effect of opiate pain meds)...getting around 9hours of solid sleep reduces cortisol. Nutritionally Omega 3 fatty acids have been shown to reduce cortisol, which leads me to nutrition...a favorite subject of mine.

Now most of the Dr's and people on these forums will recommend liquid meal replacements like Ensure Plus or Boost (Carnation VHC is now Boost VHC) and they'll recommend 2500-5000 calories of whatever you can get down to help maintain weight, and in many cases this is actually part of the problem due to what these meal replacements are made of.

All of these meal replacements use corn syrup, and oil (canola, corn & soy) to deliver their calories, soy protein for protein, and then chalk them full of isolate vitamins and minerals, which are more difficult for the body to absorb. The issues with this are many so I'll explain in detail with the hopes of it making sense. Due to elevated cortisol levels and their effect on insulin, it's important to control blood sugar levels, which means limiting simple sugars and starches. Soy protein is one of the slowest proteins for uptake making it a poor choice for top level athletes and cancer patients alike due to their systems need for quick absorbing proteins. Lastly the oils used to increase calories in a mixture of Canola, Corn and Soy.

Now I'm a fan of getting your calories from fat (higher percentage of fat in the diet ups testosterone in the body that helps maintain and build muscle) but understand this is also a contributing factor for nausea as high fat diets actually cause nausea. Oils are a great way to add calories too and Canola is considered the healthiest due to it's the highest in unsaturated fat, however it's lower in monounsaturated fat then Olive Oil. My big issue here is that these are all Omega 6 fatty acids without the balance of Omega 3's which still leads to insulin resistance and metabolic syndrome, which your body is already experiencing due to the cancer experience as described above. It's estimated that western culture's diet now has a disproportionate ratio of Omega6/Omega3 by 20-30/1 where our ancestors were about 1/1, to 2/1.

Ketogenic Diets, or high protein diets have had success treating insulin resistance and "trick" the body into using fat as energy (both stored fat and fatty acids) by breaking them down to keytones. High protein diets though are usually are very high in saturated fats (bad) and puts an added strain on the kidneys, which when going through cancer treatments are already strained due to chemo, opiates and other drugs.

Where I haven't seen a study on this, I believe from my research that using a Ketogenic Diet focusing on high fat (poly and mono unsaturated fats with a balance of Omega6/Omega3 fatty acids of no more then 6/1, preferably lower), fast uptake protein (whey is the fastest) ,plenty of fresh fruits and vegetables(studies show organic fruits and veggies contain higher concentrations of vitamins and minerals, unlike isolates these are easily absorbed by the body), and coupled with relaxation techniques that help lower cortisol would significantly improve survival rates and how patients stand up to the brutal treatments we have to endure.

My thoughts are to use a liquid/blenderized diet high in good fats as described above, fast uptake whey protein and juiced/blended fruits and vegetables divided into 6 "meals" per day to stabilize blood sugars and counteract the metabolic syndrome patients experience to increase survival rates simply by making sure they have the proper nutrients their body needs to maintain lean muscle mass.

Wow that's almost a book...I told you nutrition was my favorite subject. Anyway if you need thoughts, recipe ideas etc I'd be glad to share. Keep hitting the anti nausea meds and keep the nutrition rolling, in whatever form you can keep down.

Eric

Great post Young Frack

Thanks Cool Frack, I'm doing research right now and putting together a treatment nutrition plan based on these concepts

I strongly concur with getting as much hydration as possible. My brother went into chemo/radiation with a significant kidney disorder, and had been treated for 5 years by a nephrologist. In fact, his kidneys nearly excluded him from chemo because they were filtering at less than 50%, and this was the benchmark for the medical oncologist.
Because ChristineB (to her credit) goes on and on about it, I hounded him to the point of unpleasantness about drinking at least 2.5 litres of water a day, (spiked with lemon juice). His latest kidney analysis shows his kidneys filtering in the low normal range, which has surprised the nephrologist.
I suppose we really don't know, but I put this down to the water, and maybe even the lemon juice, which some reading I have done says has an alkalanizing and anti-inflammatory effect, which is beneficial for the kidneys.
Good luck, Joseph. I'll be looking out for your posts, and thinking of you. Linda

Right after I did my last post, on the following Monday, I had my radiation. In that evening I had fluid bursting out from the opening of my previous infection wound which was healed up. I had to go to emergency at Toronto General to have it looked at. Luckily it was not too busy and I was seen by the ER doc pretty quick. He paged the ENT resident on call. He determined that there was a new infection, did the draining and packing and checked me back into the hospital. The good news was that it was discovered early and should heal up quickly. I guess my diabetes doesn't help.

The doctors had to decide what to do with the radiation, so they put it on hold. I saw the radiation oncologist on Wednesday morning. He had a consult with the surgeon and they finally decided to carry on with the radiation because the risk was relatively small, namely the delayed healing of the wound. The risk of not continuing with the radiation was much higher. I actually only missed the Tuesday radiation. I was released from the hospital Friday.

Today, I had double radiation sessions 7 hours apart to make up for the missed session. So far, I've had 13 of 33 treatments. Until this point, I've had minimal side effects because I've been following the advice and heavily hydrate myself, including my diet, I put in 4-5 liters a day. But tonight, I am feeling the slight burning of the lining inside my mouth and more dryness. The skin also feels tender. I used a lot of Glaxal base and it works really well in soothing the burning.

I'm still feeding through the G-tube and I heard how important nutrition is when fighting cancer. So, in addition to the meal replacement, I prepare my own food to supplement. It mainly consists of lots of organic fish, vegetables and rice made into a porridge so I can blend and filter it and put it through the G-tube. I have been gradually reducing the cans and increasing the real food. I also switched to Glucerna (diabetic) from IsoSource 1.5 and I see a dramatic change in how well I can control my blood sugar. IsoSouce is heavy in corn syrup and is high in sugar.

I will be getting my second chemo next week. Blood test indicated my WBC dropped from 7 to 4 range, and the kidney function dropped as well. But the chemo doc thinks that they are still in the normal range. Hopefully, it will go OK. This time, knowing how badly the anti-nausea drugs constipated me the first time, I will take the stool softener along with the drugs.

Joseph

Hi Joseph!

So sorry to hear you have had these infections! Doesn't sound like much fun on top of what you are already going through. Though, these things never seem to go smoothly do they? Before my mom started her treatments she hit one road block after another, issues with her portacath, etc., so I know how frustrating it can be...

Glad you are back on track though and moving through treatments relatively ok. You sound like you are armed with all the right info to help you get through radiation and chemo. Radiation effects can start to get pretty harsh after the first two weeks so keep doing what you are doing and hopefully you will be able to keep a handle on things. There is a lot of good advice on here about how to get you through the side effects as they worsen.

Do you have a caregiver to help you through?

Hi Amy,

It was frustrating to keep getting these infections, but the wound is healing up nicely and I am continuing with the radiation and chemo.

I am staying at a lodge which is part of the hospital. This way, there is no driving, which can take up to 2 hours each way, during the week when I am getting the radiation treatments. My wife and daughter come visit fairly often and they bring home made food, which is pureed and filtered so I can feed it through my G-tube. Other than that, I don't really need a lot of help.

Yesterday, I developed a rash, not in the radiation area but in the lower back and part of my upper thigh. Has anyone experienced this? I am doing acupuncture to try to relieve it.

Joseph