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Joined: Nov 2007
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Hi Minnie,

Glad to see you back. You've been on our minds. I wish you continued strength and an easier time of it the next round. We're rooting for you.


Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
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Minnie:

I wish you the best with your treatments. I have been reading your updates and about your treatment plan. When I read about your fainting, I also thought about your blood pressure. Ive been struggling with mine being super low since losing more weight (it runs 76 over 52 now). The docs said when someone rapidly loses alot of weight that they can get low blood pressure. Be very carful when standing up, do it very slowly.

Ive also had to go thru those awful compazine suppositories. Those sure arent fun. Zofran for me works very well for the nasuea, as long as it was taken early enough.

Keep your great attitude, thats a big help in getting thru this awful fight. You are in my prayers.





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
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Hi Everyone,

Just wanted to say hello and give a quick update. I'm still pretty weak from the chemo but alot stronger than last week, so that's a step forward. I fainted AGAIN four days ago and it was a bad one, I fell forward and hit my forehead on some built in bookcases we have and the hit really did a number on me. They took me to the ER where they gave me some fluids, etc. Now I have a forehead that is a lovely shade of green and two matching black eyes. Not just slightly black mind you, they are red, black, blue and it goes down to the middle of my cheeks. Seems I can't do anything small lately! We laugh about it now but it really did scare my poor mother when it happened.

I have my next chemo treatment on the 13th. Should I start taking the meds for nausea before I go or wait until I come home? I want to try and keep ahead of it this time, especially since they're adding the F5U.

I've lost alot of my hair but I had thick hair to begin with so it's not so noticable yet.............thank you for the beautiful scarves Nelie, I'll be using them sooner than I thought. Losing the hair is going to be depressing, I can just feel it.

My 5th daughters 16th birthday tomorrow...........where does the time go? She was 11 when I was first diagnosed. I do feel blessed that I'm still here with her.

Love to all,
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Minnie,

Wow, when you faint you do it in a really big way. I'm glad you're OK from that and no concussion or anything. I can see why it scared your mom. And what a bummer about all the bruising--I hope that goes away quickly.

I'm glad you got the scarves and that they will be used though I'm also sorry to hear you're losing your hair. If I had lost most of mine, I think I would have been depressed by it too. Partly because it visibly brands you as a cancer patient and some people react to that. But on the bright side it also might be nice and cool in the summer I guess! Thought you might appreciate this NPR piece in relation to that:

http://www.npr.org/templates/story/story.php?storyId=5744965

As for your next chemo, I would ask your medical oncologist, or the chemo nurses, about taking meds ahead of time. I'm pretty sure I asked that and they told me it wouldn't make any difference as they loaded me up with anti-nausea meds intravenously before giving me the actual chemo. But you're having a whole different treatment than I did so maybe it does make sense.

Happy sweet 16th birthay to your daughter. I'm sure she feels doubly blessed that you are there with her for it. You're always in my prayers but will especially be on the 13th.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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What do you contribute the fainting to? Is that from the chemo messing with your blood chemistry?

Until they go away you need to wear a helmet, a mouth guard and knee and elbow pads.


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.
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Hi, Minnie,

I would start some anti-nauseau medicine before the chemo begins. My husband's blook pressure dropped during treatment and we had to lower his blood pressure meds. I think the chemo may have been one cause. Sorry you fell- he fell a couple of times but didn't hit much of anything.


Sophie T.

CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
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Minnie,
Your mother had a right to be scared! You hurt yourself badly!
Please ask your doctors before your next treatment for more info on this. Also move your favorite chair to the center of the room
for awhile. So glad you have your mother there with you. Enjoy
your daughter's day. I was so grateful that I got to go to my youngest son's graduation from college. Just so grateful. Every day should be so good. I know you will have many more of them. Your spirits sound good, and that is such a blessing!!
Take care and don't stand up too quickly.
Thinking of you,
Debbie


Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
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Minnie,
I'm glad you haven't lost your sense of humor in this whole situation but, am equally glad to see you are OK after the faint. When I read that you had black eyes ( prior to reading, rather than scanning your post) I had assumed you pissed a Doc off! LOL
All kidding aside, I continue to be amazed by your strength. With all the sh#t you have been and are going through you are still focusing on your children. If only every mother could follow your example. I personally don't think this disease can bring you down and I have said it before and I'll say it again...Minnie, you are a true inspiration to us all and if we could we would never, NEVER pick you for this turn of events. I guess God knows who can take the ball. You, apparently, juggle it between looking after your family, counselling us on the site, and chemo visits. Who knew?
My bad senses of humor aside, I wish you all the best thoughts and prayers I can. You offered kind and loving words to me on more than one occasion and they were genuine, thank you.
Peace and all the best to you, Minnie!!
Luv,
Mike


Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
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I have been having fainting spells as well when I gas up with fuel being close to $5 a gallon in Kalifornia. Of course that pales by comparison to organic milk which is up to $6.29/gal.

But seriously it's probably blood chemistry (low wbc/rbc etc.) related from the chemo protocol. I had many fainting spells during Tx and had to move furniture and dangerour items, to fall on, to safer locations. I also would sit up for a bit before attempting to stand to allow my equilibrium some time to adjust.

I am sorry that you hurt yourself so severely - that sucks.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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$5.00 dollars a gallon? ours is $10 dollars a gallon now and i need a mortgage every time i fill up.


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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