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Kerri #154299 09-09-2012 06:28 AM
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Kerri, I am so sorry to read of your latest doctor visit. You know we are here to listen and help get you thru this. Its ok to rant and be upset, we get you!!!! Please try to take this in small bites to help so you dont get overwhelmed. First, you have cancer, next you are beginning treatment very soon, third it will NOT be fun at all, fourth you WILL get thru this and recover.

Now, knowing everything you do already makes it hard to only think of the big picture. But if you focus on other things it will make this so much easier to get thru. My idea to help you take your mid off your troubles would be for you to make today a fun day for you and your family. Go to the park, have a picnic, take a walk with your husband, go to the drive in movies, play mini golf, go out for ice cream, take a drive in the country, stop at roadside stands and pick up some fresh veggies, get some flowers and replant them (mums are great this time of year), go to a county fair or carnival, if you are near the shore go to the beach, etc..... Just get out there and make the most of today, it really will help to make you feel alot better.

Good luck next week!!!!



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
Kerri #154306 09-09-2012 06:57 AM
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Kerri,

Sooo sorry that you will have to have the rads/chemo but we will also watch you like a hawk and do whatever we can to help.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Kerri #154318 09-09-2012 02:20 PM
Joined: Aug 2011
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Thank you, dear friends. Sometimes the demon comes out of the box in the wee hours of the night. Some minutes, hours, and days are better than others.

I can always count on you all to bring me back.

Just a random question that I can't ask my team right now due to it being a Sunday. I have a horrible headache and tylenol isn't cutting it. I don't suppose I could take ibuprofen at this point due to its blood-thinning properties? I keep forgetting to ask. I'll have to write this one down. I just need some relief right now.

Thanks so much. Love and health to you all.
xoxo,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Kerri #154321 09-09-2012 04:00 PM
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Posts: 291
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Kerri,
I don't know the correct medical answer to that, but it is important to get rid of your headache, too & if ibuprofen is the ticket, why not? You aren't having surgery, where blood thinning would really be an issue. You're having the shorter chemos I think. They are somewhat easier to bounce back from.

I suppose/hope you don't have your headache anymore. Yes, I too would get to a situation where I did not know if I could take this, or eat that, or whatever, and then would try to remember to ask. Write it down, make a running list of questions as they come up. You'll get through this. I felt like a light weight going through all that radiation/chemo stuff, but you know what, it didn't matter, cause like you, I'm tough.

Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
Kerri #154322 09-09-2012 04:03 PM
Joined: Apr 2011
Posts: 267
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Kerri, do you have any vicoden? I was told not to take ibuprofen during treatment but vicoden was safe to take and helped a lot with the headaches I got from my first Erbitux infusions.

Be well,
Tracy


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
Kerri #154324 09-09-2012 04:32 PM
Joined: Jul 2012
Posts: 61
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Kerri

Wishing you the best with treatments starting Wednesday and even better after treatments end.


2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Kerri #154325 09-09-2012 04:47 PM
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Posts: 3,082
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Kerri

Ibuprofen for a cancer patient with recurrence! Even Vicodin sounds too light IMO. Each time I had radiation and chemo, my RO would prescribe me 100 Percocets for the headaches, and referred pain and general crap. Trust me, it helps a lot with anxiety also as well as just laying there on that lead table.
Heck my ENT gave me a script for 50 percocet when she did the biopsy. NSAIDs never did much for me.
Seriously, pain medication is your friend at this time but under the DEA rules, YOU HAVE TO ASK and ask firmly but politely. [quote] Hint: the correct answer to "On a scale of 1 to 10 how would you rate your pain?", is always 8 or higher. [/quote]
Oh, and being angry, yes indeed, normal healthy reaction.
Charm

Last edited by Charm2017; 09-09-2012 04:49 PM. Reason: added hint

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Kerri #154331 09-09-2012 05:52 PM
Joined: Dec 2010
Posts: 5,260
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The ibuprofen with have cleared your system by the start of treatment - Wednesday. Don't suffer. Take the pill. 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
Kerri #154342 09-09-2012 11:53 PM
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Hi Kerri

Probably a bit late for your headache but you raise an important question about the use of NSAIDS during treatment. Alex was also told to avoid NSAIDS and at the time we just accepted it and didn't question why (lot of other stuff going on at the time).

As Alex was not scheduled for surgery, one wouldn't expect that bleeding time / platelet aggregation would be an issue (unless they expected him to gush when they stuck him with so many needles eek ). At the time, I assumed it was a precautionary step to give him nothing that might interfere with potential heroic measures should things go pear-shaped (which they did).

But now I wonder if there is an interaction with the chemo drugs or even radiation that might preclude them for some reason. Or it might just be that adding more pressure to the kidney when one is taking cisplatin is not a good idea.

This question has been asked a few times on the forum and I haven't seen an explanation - just recommendations not to do it.
Get advice from a proper doctor - there might be a really important factor that none of us know about.

Karen

PS Ibuprofen is one of the shorter acting NSAIDS and your platelets should start going back to normal within 24 hours. Aspirin is at the other end of the scale requires generation of brand new platelets and can take a week to normalise.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
Kerri #154379 09-10-2012 06:37 PM
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Posts: 596
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Thanks to all who commented on the ibuprofen question.

I actually took 10 mg of oxycodone and it literally did nothing. Some time later, I broke out into a dripping sweat and thought I was going to vomit. I know this wasn't a reaction to the meds because I have been taking them since my tonsillectomy. All I knew was that I had to lay down and cool off fast. I put ice on my forehead and called my sister, who is an NP. She thought I was likely having a migraine.

I took some Excedrin and went to bed with the ice. I felt significantly better in a couple of hours. So, I guess that combination did the trick. I just had to lay perfectly still or else I thought I would get sick. I've never had a migraine, to my knowledge, but that was awful. I feel badly for those who get them frequently.

Thankfully, Dan was home to take over with the kids. I'm lucky to have him for many reasons.

Thanks for all of the advice.

Charm, I'll keep that number in mind. I have to ask it of my patients all the time and it's a PITA! Some people have such a hard time answering it, I just give them the smiley face chart that we use for kids. It has been studied that the most reliable way to measure a patient's pain level is to have them make a hash mark on the 10 cm horizontal line. The left side is "no pain" and the right side is "worst pain ever". The distance is measured against a scale that was developed by these researchers (I have no idea of the developers) and that calculates your pain score. Although it has been determined and accepted to be the most reliable way to quantify a subjective thing, such as pain, no one ever uses it because it takes too much time! So, I don't feel so badly making up some arbitrary number, such as 8/10 on reporting my pain. The insurance companies don't care, Medicare doesn't care, so why should I care? In fact, if I forgot to get a pain scale report on a given treatment day, I'd always put down 7/10...a good, safe number that doesn't really matter to anyone but the patient anyway!


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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