Just diagnosed... still trying to get a grip on it

I've seen one (great) radiation oncologist and I have a treatment plan, although I'm getting a second opinion on Tuesday. I feel lucky to have two terrific specialists in my area!

My family, friends and work are all being very supportive, which is awesome. :-)

The treatment (unless the second opinion says differently) will be 7 weeks of combined IMRT and Cisplatin (once a week). My doctor said the weekly Cisplatin will get more medicine into me overall while keeping each dose low enough to have fewer side effects. He also said he thought my cancer (which is very strongly HPV positive) will respond so well to the chemo and radiation that he doesn't think I'll need surgery, which was good news. I suspect recent surgery in the area makes the chemo/radiation harder to handle.

The doctor said PEG tubes are controversial but he strongly recommends them. He said he'd rather I have the PEG tube and never use it than need it and be too weak to come to the hospital and have it put in. I agreed immediately--it's such minor surgery, I can't see why I wouldn't want it as a safeguard. 

I'm going to research things I might need when going through treatment. I know about Manuka Honey and aloe vera juice. I'm planning to very closely track my calorie and water intake and use the PEG immediately if I'm below what I need and I feel like I can't drink or eat by mouth.  Any other tips to pass along?

It probably sounds weird, but I've read a ton about side effects: blogs, message boards, web sites, etc. The only one I'm genuinely scared of is nausea from Cisplatin. I have my first appointment with the medical oncologist and I'm going to talk to him about it. I may ask for Xanax or something to take the day of my first treatment because I know dreading feeling sick can actually CAUSE you to feel sick, and I don't want that to happen.

Medical people keep telling me that anti-nausea drugs make a huge difference and nausea isn't that big a problem anymore. But it sounds like for everyone on Cisplatin, it definitely is. :(

Anyway, I'm holding in there and other than the fear of the nausea, feeling optimistic, grateful, and eager to start treatment!

Hey Merien -

I had 2 neck surgeries (figured I needed to hit this thing with everything in the arsenal) have completed 7 of 30 radiation treatments, and a week ago finished my first of 3 rounds of Cisplatin.  My chemo doc said that 3 rounds with a higher dose is standard for a guy my age (50), but I gotta tell ya, it was a little rough to get through because of ....you said it... the nausea.  Nausea shuts me down completely; worse than pain.

My doc said the nausea is always worse for the young guys; old alcoholics handle it best ('cause their livers are good at metabolizing toxins, I guess).

In any case, the nausea is not so bad that you are barfing; it's just this never-ending sense that you're about to barf.  And that makes it hard to eat, even drink; and as you know, eating is important now because at some point it is going to be almost impossible (so everyone here says.)  At your lower chemo dose, perhaps you won't get it as bad, but no doubt your doc will send you with extra anti-nausea drugs; they work, though the Zofran worked better for me than the Compazine.  Take 'em.

My doc said that the nausea from chemo was supposed to end after 96 hours; well, mine continues, albeit well-controlled by the meds, 9 days later.  I've been told that the radiation causes nausea, as well (isn't that great???), and that is what I'm experiencing.

Another thing I'm experiencing (from the radiation, so I'm told) but no one warned me about is esophogeal burning/heartburn/gastric reflux symptoms.  My doc prescribed a once-a-day capsule that did the trick.

The chemo also caused my ears to ring from time to time.  Hopefully your lower dose won't cause that.   I'm going to ask my doc about a switch to the lower dose to make sure my hearing isn't lost.  My fear there is that I'll be nauseated all the time from chemo given weekly, and even worse, I HATE getting stuck for an IV three times for each treatment!

As I continue through this process, I end up coming back to the same two things:  1. Talk to your docs (they're all about trying to get you through this as comfortably and unscathed as possible) and 2. Don't be afraid of taking the meds.  I've never liked meds because of the side effects they cause; but most of the stuff I've been prescribed have pretty much fixed the problem for which they were designed with few side effects.  DO WATCH OUT FOR CONSTIPATION: seems like everything causes this, and I tell you from experience that being impacted is the worst thing I've been through since this thing started.

Stay in touch; looks like I'm going to be only a little ahead of you in treatment.

Hey, Hang in there. I was diagnosed a year ago with stage 4 tonsil cancer, as with you I was mis-diagnosed and found out on the operating table that my tumor was not the original carodid body tumor they thought. I also had a lump on the right side of my neck. I am 47 years old and the tumor was HPV positive.. I had 35 radiation treatments along with 3 rounds of cisplatin 1every 3 weeks. They pump you with a lot of anti-nausua drugs and fluids b4 the drug is given, it was tough but just relax and let the drug work, it feels like you have a hangover for 4-5 days, at least it did for me. Getting the feeding tube is a must, you will most likely lose your taste buds a few weeks into radiation and then the throat is real sore.. I lost about 25-30 pounds off a 220 pound frame. I had the tube in for 5 months but used it for about 4. radiation is tough. take care of your skin, I used Jean's Cream during treatment and it did wonders, my skin around my neck and ears was totally burnt up and blistering most of the month of Jun/July but by August is looked ok. I had a problem with spitting which I guess is pretty normal, it happens during and a few weeks after radiation, we ended up buying big rolls of Bounty and always keeping it around.. I was grateful when that part ended.. The treatment takes a toll on your saliva glands, mine are still gone for the most part  and eating will be a challenge but I was eating a little in Sept and a little more every month.. Your docs will tell you the same thing but everyone is different.. Try not to read about to many horror stories, you control your outlook, stay positive and I promise you will get through this.  I am 9 months out of treatment and everyday gets a little better but it takes time, my Oncologist tells me everytime I see him, give it a year and that will most likely be the new you. Good Luck and keep us posted...

Merien- Keep us posted on your treatment.  My husband was just diagnosed and will start treatment next week.  It is tough to get a grip on it, but I have found a lot of helpful information on this site. Do you have ear pain?  That seems to be more painful than the throat pain. He will be getting the same treatment you are getting and we are both worried about the effects.  He does not want to get the PEG and I can't talk him into it at this point.  I hope he can tolerate the pain.  He does need to lose some weight so he is thinking of this as a force unpleasant diet.  I know it is going to be so much more!

On Apr 13, 2012 2:50 AM lbaum501 wrote:

Merien- Keep us posted on your treatment.  My husband was just diagnosed and will start treatment next week.  It is tough to get a grip on it, but I have found a lot of helpful information on this site. Do you have ear pain?  That seems to be more painful than the throat pain. He will be getting the same treatment you are getting and we are both worried about the effects.  He does not want to get the PEG and I can't talk him into it at this point.  I hope he can tolerate the pain.  He does need to lose some weight so he is thinking of this as a force unpleasant diet.  I know it is going to be so much more!

Don't worry too much about the feeding tube.  I didn't get one as my docs figured I could make it without one.  About halfway through I did, but the placement was an outpatient procedure, and not a big deal (especially not compared to the radiation effects).  So if he needs a tube, he can get one, and if he doesn't, he will have saved himself one procedure.

It's almost a given that he will lose weight, but a losing a lot of weight is not really a good thing when you need to have good nourishment in order to heal.  I lost 35pounds, which was a quarter of my weight.  Make sure to monitor his weight loss and discuss it with his doc if you think it's a problem.

Susan

Hey, thanks for asking about me, and for an update. :-) I had the PEG tube placed yesterday, and I'm one of the lucky few with lots of pain afterward. It's better today than yesterday, though, and I look forward to it being even better tomorrow. I'm substantially overweight, and I got lectured by five people ( chemo Dr., chemo RN, radiation Dr., second radiation Dr., radiation RN) not to lose weight. I joked that I had plenty to spare, and they told me it was a mistake not to strive to maintain during treatment. Please keep track of what your husband eats and drinks, and if he falls below enough to maintain a couple days in a row, push him to get the tube. All the research I've done suggests the treatment is even tougher if you are dehydrated or under nourished. I'm going to try MuGard to see if it helps with the mucositis. I've read great things about it. They have a form on their website your doctor can submit: www.mugard.com . I start treatment on Tuesday or Wednesday and I'm honestly looking forward to it. I've been having a lot of mouth and throat pain, and it will be good to feel the alien invader shrinking. :-) I hope everyone is feeling great and doing well!

First of all, yesterday my husband who was diagnosed with Base of Tongue squamous cell carcinoma on March 4, 2010 was scoped by the ENT doctor and NOTHING was found.  It was clear except for the scar tissue which remains on the back of the tongue because of the radiation.  We are doing a happy dance and you will also one day--you and your caregiver, a very important team during your journey with "c" and all that this entails.

We were told by others that the diagnosis sucks, the treatment is horrific, but the prognosis is usually pretty positive.  We hung on to those words.  Keep the end goal in mind and you WILL get through the rad/chemo. 

We decided to begin a blog online because so many friends and family wanted to know what was transpiring.  It was cathartic for both of us--patient and caregiver.  My husband could not talk for awhile and as the caregiver, I got exhausted and didn't want to talk to anyone except my three adult children and my siblings.  It is a public blog so please check it out.  Now it began March 22, 2010, so you can see what we went through in the beginning.  As the caregiver, I also posted entries from time to time.  This website is a Godsend also because many others of walked in your shoes.  Also, everyone is different. 

It seems so foreign to be diagnosed with this but you did the right thing by going being an advocate for yourself and your health by pursuing what was "not right" in your body. Here is the public blog address:

http://www.gordytaylor2010.blogspot.com

Good luck.  You can get through this thing--surrender to the treatment but fight like hell against the cancer.

First of all, yesterday my husband who was diagnosed with Base of Tongue squamous cell carcinoma on March 4, 2010 was scoped by the ENT doctor and NOTHING was found.  It was clear except for the scar tissue which remains on the back of the tongue because of the radiation.  We are doing a happy dance and you will also one day--you and your caregiver, a very important team during your journey with "c" and all that this entails.

We were told by others that the diagnosis sucks, the treatment is horrific, but the prognosis is usually pretty positive.  We hung on to those words.  Keep the end goal in mind and you WILL get through the rad/chemo. 

We decided to begin a blog online because so many friends and family wanted to know what was transpiring.  It was cathartic for both of us--patient and caregiver.  My husband could not talk for awhile and as the caregiver, I got exhausted and didn't want to talk to anyone except my three adult children and my siblings.  It is a public blog so please check it out.  Now it began March 22, 2010, so you can see what we went through in the beginning.  As the caregiver, I also posted entries from time to time.  This website is a Godsend also because many others of walked in your shoes.  Also, everyone is different. 

It seems so foreign to be diagnosed with this but you did the right thing by going being an advocate for yourself and your health by pursuing what was "not right" in your body. Here is the public blog address:

http://www.gordytaylor2010.blogspot.com

Good luck.  You can get through this thing--surrender to the treatment but fight like hell against the cancer.

Thanks for the blog link! I'll read it this morning. :-)

I'm actually blogging as well, at http://eluminarts.com/?cat=52. 

Merien,
I'm not surprised you got multiple lectures about maintaining body weight. Whatever you currently weigh, whether it's considered overweight or obese or not, the goal is maintaining current weight. Part of the weight you lose is your body robbing what it needs to repair the daily rad damage from elsewhere, and it's not going to get a good portion of it from places you should be keeping it (notably muscle mass). In addition, it also influences mid/long-term prognisis, especially if there's massive weight loss.

The reason you're getting admonitions about weight maintenance from multiple sources is that significant weight loss is not unusual. With some patients it can be as much as 25-30% of starting body weight. If it's too much, radiation treatment must be stopped or paused until sufficient weight is regained, which is also not good (does affect on treatment efficacy some). I was warned beforehand it was a very short trip from the radiation oncology area up the elevator to a hospital bed, and they'd have no hesitation doing that if I lost too much weight.

If you're not already physically active, ask your team about what you can do while you're undergoing treatment to get physical exercise *appropriate* for your existing physical and medical condition. I was encouraged to keep as physically active as possible as it helps with recovering from the damage treatment is doing, helps your immune system which can also take a hit from rads and chemo, and influences long-term outcomes.

Best Wishes and GL with the rads
John