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#174517 11-25-2013 02:35 PM
Joined: Nov 2013
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BrianPK Offline OP
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I am talking the post Dx, pre Tx wait.

I am not scared of the treatment per se. I knew about 2 weeks ago what the plan was going to be, and I know it's going to suck, and I will be miserable no matter how brave I am. I told my wife to throttle me if I become too needy or too whiny.

But I am worried about the length of time that cancer has been active in my body. I start treatment Dec 5th. But on this past Thursday I developed a sore tooth after hitting a shell from a bag of mixed nuts. I have a dental apt tomorrow, but I just don't want to wait any more.

The thought of distant mets has me nervous... I know I can't let it eat me up. But 60 days from me noticing nodal involvement to 1st treatment seems like an awful long time.

Edit: I guess this is just me venting. I'm sure you've all been here.

Last edited by BrianPK; 11-25-2013 02:44 PM. Reason: see above.

Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
BrianPK #174520 11-25-2013 03:28 PM
Joined: May 2013
Posts: 134
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Know what you mean. On Dx they told me to hang on that things would move really fast. That was followed by 2 weeks of seeming inactivity. The fact that I got offended at the speed of the response after ignoring a swollen lymph node for close to 6 months is humorous (now).


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
BrianPK #174523 11-25-2013 04:09 PM
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Brian - we've all been in your shoes. The medical community just doesn't realize how much we want this disease gone, and I mean today, not two weeks or two months from now.

I would like to say from diagnosis to beginning of treatment there is a lot that has to be done, but is there really that much to do. I'll bet if you were a VIP, a president, a senator etc, things would move faster, way faster.

But, for us mortals, we just have to suck it up and wait our turn.

If you're stressing over all this, that's normal, but it's also counter-productive, it let's the C win. It's easy to say don't think about it, go on with your life. Do the things that you enjoy because later you won't be able too for awhile. While easy to say, it's not easy to do.

I don't know if I was always just so tired that I didn't have the energy to think about it or if I really did have that many diversions going on in my life. But, long story short, I haven't spent a bunch of time fretting over what might happen, what might go wrong, what might not work, etc etc.

Bart, one of our members here taught me a phrase "don't attach to outcomes". Don't get your hopes up or down about anything that you are going through or about to go through. If you do and then it goes the other way, you've just set yourself up for possible depression, and none of us need that.

Instead, just try to say, okay, it's 3 weeks til treatment begins and have no other judgment positive or negative about it. You have plenty of reading and educating yourself to be doing right now with info on the forum and on the website. Spend your time on that rather than on things you have no control over.

I'm not preaching, I've just heard it over and over on the forum by member after member. This is a way more positive use of your time and energies than the negative alternatives.

Hang in there, you will get through this just fine. Write and ask questions when you need too. We will help you get through it.

take care

Tony

P.S. While this forum is very appropriate for this particular question, I think you would get more in the way of responses if you put it in your Introduce Yourself thread. That is where we got to know you. There is where we can easily scan your thread to remind us of who you are before we respond. If my question in any way related to me then I always leaned toward using my Introduce Yourself thread. Just a thought. Once my treatment actually began then I closed out the Introduce Yourself thread and began a Currently in Treatment thread. I'm looking forward to the Post treatment thread which should begin just after Christmas.

Last edited by n74tg; 11-25-2013 04:19 PM.

Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

BrianPK #174528 11-25-2013 07:39 PM
Joined: Nov 2013
Posts: 104
BrianPK Offline OP
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Thanks Chris and Tony!

As far as the forum organization goes, I am still learning the ropes here but I have about 7 different forums I belong too. Mostly hobby/work based. Each has its own ecosystem so to speak.

Some online forums like a new topic for every question and others like you to maintain all your problems to one specific thread and anyone who wants to pay attention will.

I personally like to keep my posts to a specific thread as you suggest but I was trying to follow what I thought was logical given the forum subtopics.



Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
BrianPK #174535 11-26-2013 05:41 AM
Joined: Jun 2007
Posts: 10,507
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Brian we are pretty flexible around here as far as postings go. Some members will continue on with one very long thread while others will make a new thread for every question. Whatever way you are comfortable with is ok. We arent too strict about things that arent really that important in the whole scheme of things. (At least I say that, if you ask people Ive edited they will tell you Im as tough as nails LOL!) There are too many sick people who need help to worry about the placement of ever single post, plus I only have so many hours in the day that I voluntarily monitor the forum.

If you read this thread, it will contain most of what you need to know about the forum. Its pretty easy once you make a few posts. The complete set of rules are on the bottom left of the main forum page.

Forum Etiquette thread


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
BrianPK #174541 11-26-2013 07:42 AM
Joined: Jul 2012
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Brian, many have been in your shoes, including myself, having just had surgery, and now chemoradiation, again, and the waiting sucks. It took a month from my diagnosis to start chemo treatment in 2009, other subsequent treatments, surgeries, radiation, took longer, like two months or more. I waited 4 months for radiation treatment back in 2010 to start in 2011 due to Cobra Insurance, dental work, radiation planning. You have every right to be concerned, and theses tumors can grow in a short time, anything is possible with cancer. Twice, while waiting for surgeries for one neck tumor, another one popped up while waiting, which I found with my daily checking, in fact, I found all my cancers, except the last. Thankfully, they were taken out with the one surgery. The other factor is they have to wait until healing to begin treatment. For a neck dissection, it's 4-6 weeks, can be longer, but not sure about a tonsillectomy, which sometimes has bleecing issues in adults. It doesn't sound not unusual, and I'm used to the hurry up and wait, the busy scedules, and high demand for top doctors, but you can call to see what's the status, etc, but I don't if it ever helped me.

Good luck with everything.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






BrianPK #174546 11-26-2013 08:24 AM
Joined: May 2013
Posts: 134
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In my profession, as in most if not all, everyone wants my services as fast as possible up to and including immediately. However, if I miss something or make a mistake, no one dies. I think there is a speed where those involved have come up with a plan, double checked it to make sure they didn't miss anything. Notify the team of the plan and receive their feedback, dot the i's and crossed the t's. And THEN proceed. I would imagine that those times are all over the place dependent on a myriad of variables but going any faster than that is risky. That said, if you had told me that during my waiting period I would've slapped you (figuratively of course).


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
BrianPK #174547 11-26-2013 08:25 AM
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Posts: 5,260
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Maybe I am just being contrary today this is the second post I've kinda gone against the grain. If you've known for two weeks I am assuming at this point they've had you in for bloodwork etc... and done your practice radiation. If not then I would be pissed. Also you should have visited the dentist as well. When are they planning to start? It's been three weeks since your tonsillectomy. I would think they will have you starting next week (since it's a relatively minor procedure - though admittedly NO FUN when you are an adult) You should be fully healed by now. (my procedure was 14 hours long and they gave me 5 weeks of healing time from completion of surgery to first day in the oven.) In between I had two cts, blood work, and my radiation teaching and radiation planning (Practice run) and dentist appointment and hearing test. Despite KNOWING they "got it all" post surgery I was still happy for it to begin. For you since based on you signature - you have only had your tonsils removed ( not the node ) I would be pushing them to start ASAP!!!!!!!!!! Since you likely aren't all clear - r/t the reactive node. Stress to them - repeatedly the sooner the better - do NOT let them make you wait.

The plus side to all this is you do have time to fatten up and HPV related cancer responds well to chemo and rads - but still more than 4 weeks is too long. hugs.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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