And so it begins..

Like you are thinking, I (like others posting here) refused to get a PICC and PEG. I thought I was going to be tough and that lasted about 4 weeks when I couldn't get anything down, not even water for a few days. PICC came first. Halfway through treatment, I had to get the PEG. Day I got it I was borderline pneumonia and had a fever. They didn't want to do it but I had waited too long. They hauled me down in an ambulance to do my radiation after the PEG procedure.. haha (I can laugh at it now). Ended up having to stay in the hospital for 4 days and they put me on dilaudid during my stay. Ho! that was good stuff for the first couple days. By day 4 I could feel it affecting me in a negative way. I cut that off and my first night back home I had a very technicolor nightmare (still remember it). My WBC were really low...and I had to INSIST on the docs giving me a couple shots of Neupogen to get my WBC back up.

Knowing what I know now, what would I do? I'd still put it off. The PICC requires cleaning and it's not a big deal to get one put in. The PEG? I think I'd still wait and here is why. I would be much better equipped to get through the process now.

If you decide to give it a go and not get the PEG or PICC you ABSOLUTELY MUST:

1. Stay on top of your medications, ESPECIALLY medication for nausea. Once it starts, it is nigh impossible to get under control. I hate taking medicines and made that mistake.

2. Figure out your pain meds and stay on top of it. I was squirting in liquid morphine but was scared of using it so didn't use enough. I also used pain patches later on.

3. Cut way down on sugars/acidic foods. This will really help with the mucositis. That and gargle with baking soda and salt. My mucositis wasn't too bad.

4. I hated that magic mouthwash, but later after treatment and I had my PEG taken out early to force me to get nutrition down my throat, my ENT gave me lidocaine (ingredient in magic mouthwash). I take a bit and gargle with it then very quickly drink a high-calorie/high protein smoothie I made (I posted another thread with a recipe).  The straight up lidocaine provided more numbing than the magic mouthwash. Still hurt to swallow, but the numbing effect lasted long enough to get that smoothie down.

5 #1 - #4 will help you be able to get the needed nutrition and liquids you will need to keep weight (you will still lose weight) and strength. Keep it simple.

6 Look in to a product called Radiagel. I used it for the radiation burns on my neck. Tried everything and nothing worked. When I was in getting IV nutrition a nurse turned me on to it and the stuff...for me anyway, was pure magic. Start using it from day 1 and if it works like it did for me, you will have 0 problems.

If you decide to forego both, you need to make a deal with yourself NOW and at the first sign of not being able to deal with either getting a needle inserted for bloodwork, IV, medicine then you'll need to get a PICC and at the very earliest sign that you are not able to get nutrition or properly hydrated, you'll need to get a PEG. Don't beat yourself up about it and keep putting it off (like I did), because it's not going to get better at that point.

If you are going to work, see if you can get reduced hours if you can swing it and get all the sleep you can get. Having said that, if you can squeeze in an hour of walking that will do you some good.

Sorry to be graphic about my experience, but it's useful when weighing the pros and cons of getting a PEG and PICC.

Be strong!

Hang in there.  It's sounds trite but if you go into this battle with as much positivity as possible, it helps.  Hopefully you have amazing dr.'s and nurses.  What we have learned so far is that the infusion nurses are the ones to go to.  They take everything seriously and DO NOT hesitate to inform the dr.'s of new symptoms and push to get the meds that my husband needs.  We talk more to the nurses, and our nurse practioner than the dr.'s  Which I am actually OK with.  Hydration is key. Eating is second.  Push the fluids as much as possible.  If needed, go in for fluids.  Dehydration is no joke.  We learned that the hard way the first week.  Everyone has there own journey with their own choices.  You have to do what feels right.   It'll get worse before it gets better but it will get better.  We are entering our fourth week and we know the messiest part is ahead of us, but we are halfway through.  It goes fast.  God Bless. 

SuzJ said:

Passing out..

Is this normal? I have passed out more in 2 days than I have my entire life. I'm not superwoman

Not sure that it is "normal".  Are you dehydrated?  That could be a sign that you might be.  Have you called your dr.?  Praying that you find out some answers.

So sorry it's not a good day.   It will pass.  I know that hearing that now is not so helpful, but it will pass.  Have you been taking your anti-nausea meds regularly?  I give my husband his an hour before he is due for another because once it hits, it's a B to get under control.  I also never hesitated to call the nurse when he felt wonky because I wanted him to be able to function as much as possible.  So we have two anti-nausea drugs and we can go in for fluids whenever he needs it.  If possible, can you go back today for fluids and possibly anti- nausea meds given via IV?

    Water, water, and lots of water.  Or Gatorade or Propel.  Anything that can replenish electrolytes.    Sleep if you can.  

    I hope you feel better this evening.  Hang in there!

Drink as much fluid as you possibly can, it is virtually impossible to overdo it at this point. In fact, be very on guard about not getting enough fluid and needing at extra IV bag of saline. Most do need pain meds at some point. You will not get addicted. When your body is in need of pain relief, it somehow does not trigger an addictive reaction. (me - no DR. LOL)

Good luck, take one day at a time. 

I agree with AnotherSurvivor.  If you have not already called your dr. you should.  Seems like you do need fluids on a regular basis.  I know that it stinks and you probably feel lousy but the fluids will help and the dr's and nurses can monitor you.  Best place to be, in my opinion, is where all the dr's and nurses are .    Hang in there.  You can do this.  You already are.  My hsuband's first week was tough too.  But he went in for fluids and anti nausea drugs and came out a different person.  He was really good for the last 3 weeks.  It does help.  Keep us updated!

dw195 said:

RT and Recovery

SuzJ,
I'm currently in my first week of recovery after 7 weeks of daily Proton radiation therapy and 5 rounds of Erbitux. I was in pretty good shape as i'm a cyclist and regularly rode my bike 40 or 50 miles at a time. Even with that, as has been mentioned beginning around week 4 you will become extremely fatigued and it will start to become very difficult to eat. i didn't get a peg tube and luckily since I decided on Proton in lieu of IMRT the rads aren't quite as bad, but now in my first week of recovery after treatment I'm on a total liquid diet with a little bit of watermelon occassionaly.

I'm sleeping at least 12 hours a day and working from home a couple of hours a day. You will not be able to go into an office the final few weeks of your therapy, I hope you can plan around that.

Don

My husband has been looking into proton therapy.  We have a consultation at Mass General on on Friday and are planning to ask about it since they have a proton center there.