Wow! Thank you so much for all of you posts, dear friends! All give me hope. I did finally book a hotel for this Friday night out in mid-western MA. I've never been to this area, but Dan said there's some nice sight seeing and we'll keep it low-key. I'm going to try my best to leave the beast locked in the box and make it a cancer-free 36 hours. No talk of cancer; try really hard not to think about it.

Then, I get my port placed on Monday. That should be a piece of cake compared to all else!

Cheryl: What is manuka honey and where do I get it? It will be a 2 day course, btw (Sept 15-16). I think I will have the opportunity to gain more knowledge about how cancer works, the different types of treatment out there, and as we know, knowledge is power!

xoxo,
Kerri

Hey there... two days should be fine! and take your mind off everything else for a bit. The vacation is great. I did the same thing. After dx and before surgery, my husband and I flew to florida a week before just for a few days - we'd traveled over christmas and it was okay but a bit abismal as we were waiting for a surgery day etc... but the trip to florida relaxed me and prepped me for the up coming surgery. Then after surgery we went away with the family as I recovered. People thought I was nuts but I figured, being home I would feel like I would have to clean and cook, away I would have someone else do that for me. (plus statistics support the theory that relaxation helps heal, mentally and physically and does affect the outcome of treatment.) So enjoy your trip and time with hubby.

Manuka you can find at any health food store - whole foods carries it. I used the 16+ they suggest buying organic, and pure manuka with an UMF of 12+ or above. It is natures hydrogen peroxide, it is antibacterial, antibiotic, and has good results in wound healing (sloan kettering did a study and found it was better that some of their wound healing techniques - though the H&N ca study was inconclusive) They are still running a study in BC or were last year on mouth sores etc. Do check with your drs. before using it but I imagine it should be okay, mine said go ahead.

I swear it not only helped hold off the really bad mouth sores - I had some blisters but they never opened up, until the very end of treatment, and I thought I was coming down with thrush just after treatment finished and my dr. said use your magic mouthwash it has nystatin in it ( I had been but it didn't help!) I had stopped the manuka the last few days of treatment when things got bad, so I sucked it up and started using it again (it stings for a bit before it soothes) and sure enough the beginning stages of thrush went away in a day or two. It also doesn't cause cavities because it is antibacterial. this was mentioned in the study... and someone explained it here when another member asked.

Anyway have a great time away - you more than deserve it. hugs.

I finally have my radiation simulation scheduled for this coming Tuesday (8/28/12). My port goes in the day prior. Things are starting to happen, which is good, but it's now becoming more concrete in my mind that this is really happening. It's funny how the mind works like that. STILL waiting for my HPV status on my tumour. I was supposed to get 2 returned calls this week, but nothing. I know it's a low priority on the phone triage list, but c'mon. I'm going to call my SO tomorrow because he has clinic hours. I'll get an answer then. PLEASE, IF THERE IS A GOD, LET IT BE POSITIVE!!!

Post and rant over and out!

Love you all!

Hi Kerri, you'll be alright. My best wishes are with you, just take good care of yourself and be positive.

I'm obviously not sleeping when I should be. My 3-year-old will be up in 4 hours...

I'm sitting here reading the package inserts for my chemo meds, carboplatin and taxol.

I generally know about carboplatin compared to cisplatin from reading here, but I don't know much about taxol.

My MO said that I probably won't lose my hair, except for some in the back (underneath), from the radiation.

Anyone out there have experience with these drugs alone or in combo? Did you lose your hair. Taxol cited alopecia, more than carboplatin did. I'm just curious. It's not a huge deal to me if I lose my hair, but I just want to know what to expect.

I'd appreciate any input.

Thanks,
Kerri

Taxol will likely cause hairloss - sorry to say it. Radiation depending on the location of the beam will also cause hairloss - it'll grow back in quickly though - my friend has had 3 different chemos so far and they're switching her to a new one - each time she loses her hair. The last one was taxol... And yup... She lost it... But it was back two months later. - little sprouts - short hair looks good on her. I know hair seems like nothing compared to everything we're going through but despite the fact that it seems frivolous - to a lot of women It does have meaning, for me it was a sign to everyone - I'm sick... not something I wanted to advertise - don't get me wrong - I didn't want to hide it - but it's all about normalcy.

Hugs - i know its not something to look forward to. I'll pray you have extra strong follicles

I'm okay with it. I'm just hoping it will grow back straight and maybe not gray

Hi Kerri. I hadn't heard anything from you, so I figured I would check on here. The hair I lost from rads grew in super soft, so I buzzed it and it grew in normal. My husbands dad, when he had chemo and lost his hair, it grew in the same essentially, soft like baby chick hair and he shaved it off and it grew in normally, but grey, but he was 53.
You are still in my thoughts.
I wish you luck with the treatment and the tube stuff. They didn't put my tube in until they felt I needed it in treatment. some people can make it through treatment without it, while others need it. I ended up with a PICC line because I couldn't eat or drink for 12 days, so they put the PICC line in cuz I was still a ways away from when they had scheduled to put the PEG tube in. But I was like Cheryl, I didn't tolerate the feeding tube well either. Hopefully all of your stuff will go well, or you won't need it!
You are in my thoughts!

Hi Kerri. I just saw this, but I had 4 recurrences less than 2 years. I jst finished my 3rd neck dissection, radiation during surgery, and a neck flap. I'm going to do reiiridation and chemo again. Good luck.

Oh, Paul!

I am so very sorry to hear of such a horrible experience! You must be wondering what the f**k is going on! It makes not sense! Do they have any idea why this is happening to you? Was your cancer HPV+?

I will be thinking of you and hoping for the best as you enter treatment yet again. I hope you have a strong support system in place. I cannot imagine how one would handle all of those recurrences.

Thank you for taking to the time to think of me and wish me luck. You must be a fighter to have made it this far. I look forward to seeing you back here as you are able.

With great care,
Kerri