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#66020 09-13-2007 04:31 PM
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After much lost sleep and the most anxiety I've felt thus far...........the report from my Spiral CT showed it is scarring in my right lung and not cancer. I got the call at 5:00 today, during the prayer circle at the end of my Varsity cheer teams practice......how cool is that.

The PET I had done showed the spot in my right lung, with an SUV uptake of 4.5. When I read about the PET and saw that 2.5 uptake and above is usually malignant, I felt absolutely hopeless. SO, it is true that we need to step back a bit when we get a PET scan result and await further testing. PETS are awesome tools for our cancer, but they can also cause us tons of anxiety!

My surgery is on September 25th, 5:30am arrival time......which sucks, I'm so not a morning person. We're leaving here as a family on the Sunday before and spending Sunday in DC and then Monday doing some fun things with the kids in Baltimore. The girls will stay with us at a suite until Thursday morning than they will go back home with one of our older girls to get back into school.

I like having a plan in place, I like what Hopkins has to say, they have even included re-radiation in my treatment plan. I'll keep everyone posted.

Thank you for all the support through this, it's certainly been a hectic, scary time.

Love,
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.
#66021 09-13-2007 05:19 PM
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Minnie,

That is great news - I am so happy for you! I take comfort in the fact that my CT last week showed nothing in my lungs as well. It makes me feel like I have a fighting chance. Great idea to have some special family time before the surgery. Our family loves camping and the outdoors, so my husband is taking us camping this weekend for a little down time. My 2nd neck dissection surgery is set for 1:30 Sept 18 -I wish my arrival time was as early as yours -I don't get there till 11:30 and of course nothing to eat or drink after midnight - no food is OK, no drink is going to be extremely difficult-my mouth will be glued shut by that time. I sip water constantly - guess I'll just have to swish and hope I don't swallow! How do you plan to deal with that issue? I wonder if a couple of ice chips from time to time will be OK? Guess I can call my nurse, but I have a feeling I know what she'll say.

I wish you well with your upcoming surgery-I'll be thinking of you. You sound very upbeat and optimistic. Today the shock and fear has worn away quite a bit. I had to take an Algebra test this past Tuesday and I was in a mess emotionally - thought I had bombed the test and was so upset because I just started back to school, want to become a clinical dietition to work with head/neck patients and now have the cancer recur, not to mention dealing with my children's reactions. Anyway, got that test back today and made a 93 - I am taking that as a sign that I can kick this cancer again, stay in school and continue with my plan. Here's to the fight - you have been an inspiration since I joined OCF a couple of years ago and I wish you all the best.

Pam


SCC Base of Tongue Stage IV- 2/04 - 40 Rads 1/2 conventional, 1/2 IMRT; 3 chemo treatments consisting of Carboplatin/Taxol/5-FU; Right Radical Neck Dissection
7/04; scans and pathology clear
#66022 09-13-2007 05:46 PM
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Minnie what good news to start the day with,god bless,
Pam, hang on to Minnies coat tails its gonna be a bumpy ride, but keep each other safe.

love liz


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.
#66023 09-13-2007 05:58 PM
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Hi Pam,

September 18th is a wonderful day you know........it's the day after I gave birth to two of my daughters 10 years apart. I had Charity on September 17th 1980 and then had Mercedes on September 17th, 1990..........SO, the 18th is a special day and will have good vibes for you. I'll be thinking of you Pam and hoping for good results.

I went back to nursing school when I had just my six oldest daughters. We were not planning anymore children and I SO wanted to finish my schooling I had started after high school. So, I took the leap and went back. I've always loved school and I was in Heaven to say the least. I had one year left to finish my degree and I was so excited. Then, after a night of not being safe, we found ourselves expecting our 7th daughter, Samantha. I was heartbroken, pissed, not happy, you name it in a negative light and that was me! I didn't think they would allow me to finish the year out, I am oldschool from Maine and they used to make the girls that "got pregnant" leave school. Well, of course they had no issues with me finishing and I not only finished, but delivered Sam 9 days before my graduation AND was Valedictorian of my class. Such a proud moment for me.........as I sat there in my nursing whites, my chest about to burst from breast milk, the usual oversized pad we all have to wear after childbirth, and worrying nonstop that she would cry in the front row with my husband and I'd have to leave the stage to go nurse her. It wasn't the way I imagined my graduation but it sure ended up the most perfect day of my life. Sam is 13 now and loves to hear her dad and I tell that story!

So, stick with school, no matter how sick you feel, no matter how horrible a mindset you may have. It's something for YOU and it will make you feel good.

Keep me posted,
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.
#66024 09-13-2007 06:00 PM
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Liz, you are right, it's going to be a bumpy ride but I like to call them speed bumps........we all get over them eventually, just slowly.

How are you doing? I'm glad this board and the people on it are helping you deal with your grief. I bet Robin is up there just a bragging about his wife.

Love,
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.
#66025 09-13-2007 09:15 PM
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Oh Minnie--I'm so pleased for you--and to get the news during Prayer Circle is truly awesome!
So c'mon, you and Pam--get those healthy lungs going on some deep breathing and relaxation and you'll be in and out of that surgery in no time!
Brenda


Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
#66026 09-14-2007 01:32 AM
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Minnie,

Thanks for the encouraging words - thought I'd tell you I think Sept 25th is a good date too-that's just 3 days before my wedding anniversary - 23 years this year. September is one of my favorite months of the year. I sure don't know how you managed to go back to school wtih 6 children at home and then one on the way-you are definitely one strong lady! It's been hard enough with just one left at home (he's 15), one that just started college (she's 18) and one that just graduated college (she's 22). Of course, I turn my phone on silent when I go into class and everytime I check it after a class, one of the girl's has called and when I call them back,they're somewhat aggravated that I didn't answer the first time! They are so used to me being here for them whenever they need me, they don't like having to wait! They're starting to get a little better and both have told me they are proud of what I'm trying to do, so it's all good. My son likes to compete with me on grades, which is not so bad because he is actually studying more and his grades have been higher than usual.

I actually told someone yesterday that this surgery and new treatment was "just a bump in the road", so we are on the same wavelength there. Did you sleep any better last night? I have slept through the past 2 nights finally and I haven't cried any the past 2 days. I think Tuesday was my main breakdown day and I have been better since then. Please try to eat well between now and the 25th. I know you have lots of coaches and cheerleaders helping you in that department! I have to really push myself in that area because I don't get hungry and it's still not an easy, automatic thing for me to do. I have swallowing issues since radiation -I can eat pretty well as long as it's carefully planned and I have lots of time. I can't eat on the run nor is there any mindless snacking. I used to be an eater whenever I was stressed and I don't have that crutch anymore. So just be sure to eat and get some good nutrition in your body.

Brenda, thank you for your kind words - I know you are going through some tough times as well. I have been doing some deep breathing when I feel panicky and it does help. I am going to do a little hiking this weekend and that always makes me feel better to be in the great outdoors and I live in a beautiful part of the country - lots of lakes, hiking trails, etc. I wish you all the best with your treatment-take care and keep on posting. This new board is a great avenue to get some of these scared feelings out in the open and I am grateful for it. Thanks to Brian for adding it.

Pam


SCC Base of Tongue Stage IV- 2/04 - 40 Rads 1/2 conventional, 1/2 IMRT; 3 chemo treatments consisting of Carboplatin/Taxol/5-FU; Right Radical Neck Dissection
7/04; scans and pathology clear
#66027 09-14-2007 04:51 AM
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Minnie -
From what you have written, you are now clear of cancer, even tho a recurrence was suspected from the CT scan? Are you having surgery to clear out the scar tissue? I think this is miraculous news, Minnie - you are such a kind and gentle person, I wish you many decades of enjoying life with your children. God bless you, Minnie! Hugsssssssss, JaneP smile


Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
#66028 09-14-2007 08:51 AM
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Minnie-
That is great news!
Pam, I totally understand about the late time of surgery..I had a CT guided lung biopsy at noon one time and it was the same thing, nothing to eat or drink after midnight. Brutal! I kept some water close by to swish and spit which helped. Also they let me take a little sip with the medications beforehand when I explained to them about the dry mouth.
Somtimes it's those little things that get to you!
Melissa


Age 36. Four years of fighting Stage 4 Skull Base Cancer
Can't even fit it in the signature line. I've tried it all! 5 surgeries, IMRT, cyberknife, cisplatin, erbitux, AIM, taxotere, carboplatin.
#66029 09-26-2007 03:49 PM
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You all are amazing. My DH was to start saline induction today in prep for chemo tomorrow, but they had trouble with the new port, so back we were to the hospital for xray and checkup by the doc. He wants it to rest for a few days, so chemo start is postponed till next week. That did not break my husband's heart smile It's good to have a place to post. I almost never post on the other boards because I don't want to scare the newbies or anyone else.


Caregiver to husband David, non smoker. Dx 1/06 SCC Base of Tongue Stage IV, neck nodes involved. Surgery/Chemo/Rad. Treatment finished 5/06. Waiting. Recurrence in lung, Aug07. 6 months Cisplatin/Erbitux. Spots shrinking after 3 Cisplatin tx.
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