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chemo rads to start

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

The plan is to start Cisplatin (sp?) 12/18 and do a dry run of radiation....then we start on our 35 rads daily routine. After so much waiting and diagnosing, it feel like it is moving so fast and there is not enough time to gather or prepare what we need. But the sooner we start, the sooner we finish. So here we go. I am glad to have the superthread list of recommended things. Makes it so much easier. Our kids will be with us for the first month, but then they will stay at home with my inlaws for the second month. We have to relocate to Boston for treatment so it makes sense for them not to see the worst of it and for their routines to stay as same as possible. Emotions are varied....glad to take an active attack but also leery of what is to come. We were very impressed with Dana Farber....made it an easy decision.

k

luvofmylif
Posts: 344
Joined: Sep 2012

Good luck with treatment. My husband just finished 2 Cisplatin doses( scheduled for 3rd but unable to complete due to hearing loss) and 30 radiation to right neck. Getting a little stronger everyday.

Joan

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

My husband is just starting too, next Tuesday (12/4). We are commuting for four days of treatment and then going local in Philadelphia, so you are not alone!

Sounds like you know what you want, and are in great hands. And what great support to have grandparents to step in and keep stability at home! (Although I hope the kids get spoiled in a good way!)

It does seem really fast though, in less than two months from having a lump, we are on the way to a cure, just 4 weeks post-op for my husband. I think it's going to be a short fast winter!

Kari

phrannie51's picture
phrannie51
Posts: 3821
Joined: Mar 2012

at first things seem to move so slow, then your life is filled with appointments and everything moves so fast! Around here they have a name for when rads start...ground-hog days. Every day the same thing...one day following the next. You get into a regular routine, as appointments are always at the same time. At first the days crawl, but then as the routine sets in, you will see they will fly by.

Sending positive thoughts to both your husbands...this is tough treatmet (my Onc told me that it's one of the toughest)...but it's so doable.

p

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

LOL, my phrases are catching on... I love it.

JG

phrannie51's picture
phrannie51
Posts: 3821
Joined: Mar 2012

Stick close to this board. The folks here have a wealth of practical knowledge...I can't tell you how many times I went into my Dr. and directly asked for something, and got it just because I heard about it here. Never be nervous about telling your Dr.'s about anything that you might need...most of the Onc's will bend over backwards to make this journey as comfortable as possible.

Yes John...your "ground-hog" days is the PERFECT name for those radiation days...:)

p

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

or adapt... You are much tougher than you'll ever realize.

I too was once in all three of your places... Scared, not knowing what was going on, what the future held.

I was relatively a cancer knowledge virgin for H&N Cancer anyways... It has a very fast learning curve, you'll be there in no time.

Anyways, not to add to the anxiety, but all I could think of when first told I had cancer. Was of pale, frail, washed out, no hair people that eventually whithered away and passed.

That is far from reality...

The first day at the chemo center, there were people mulit-tasking with laptops, and cell phones conducting business. All while hooked up to an infusion pump and getting chemo.

Surely they must have something much less than I (I thought).

It's a crap shoot of side effects and reactions... I think overall, most of us get through it with minimal pain and suffering.

It's just something that we never have been taken before, we aren't sure of anything, we aren't in control at all. We dig deeper than we ever have in our life before...we survive.

I realize that some do have it very rough, but for the most part, though discomfort and painful, a lot is very doable.

Communication is key with your MD's. Stay ahead of the game on pain and discomfort. Be pro-active, never re-active if you have the choice.

Know that there are many here that have gone through the same as you.

The brutal truth is that many, most have survived. Yes a few bumps and bruises.... And unfortunately, a few have not.

But you'll come out of this with a new reality of what truely is important in life.

Best,
John

katenorwood
Posts: 1853
Joined: May 2012

K,
I read most posts and try to reply with positives. But sometimes I don't have the experience most of the other people have on here. John, Phrannie and other's will get you through this, that's for sure. I re-read John's post to you. And I'm taking alot of info from this for my new journey I'm on. I wish you an easy journey through this...with few side effects. Katie

CivilMatt's picture
CivilMatt
Posts: 3067
Joined: May 2012

Vermontgirl,

You will have time to gather most supplies. Maybe, the list should be broken down by importance? If I had to bet on the first side effect to pop up I would say nausea, so be prepared for that. It is like John related, it is “all new”. You have to learn on the fly, but not to worry you have your immediate treatment team and your cohorts here at the H&N “Ground-Hog Days” information and advice forum (open 24-hours a day).

It sounds like you have a solid plan and a top-notch team so all that is left is to get in the game and kick some cancer butt.

Best,

Matt

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

I love that phrase! Thanks everyone. I will definately stick close to the board for advice as we endure the necessary evils. Civil Matt....I think prioritizing the list or organizing it is a great idea....but honestly I am just so glad to have any list that it doesn't matter. We found out that primary is tonsils. I never thought I'd be so happy to hear that my husband has a tumor. Weird how relative things become. As bizzarre as it seems, this cancer has changed us in a good way too. We always felt we had our priorities straight, but this clarifies things even further....pushes extraneous things to the side. Officially T1N2a but it doesn't seem to make a big difference as everyone has their individual battles/responses. I have 18 days to pack, shop, and organize. At least I do that knowing what lies ahead with a clear plan and trust in medicine, and knowing I have all of you to lean on. Thank you....each and every one of you who has fought, continues to fight, or is helping someone to fight. I think of you all often and send positive thoughts your way.

K

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