| | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Minnie's favorite daughter - We are so happy she has her wonderful family to support her thru this second battle - we are pulling for her to soon be back to her "normal". Sounds like driving the mini race car is a step in that direction! Give her our love and well wishes. Warmly, JaneP
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)
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Amy,
Thanks for the update.
Please give your mom a big hug from me and I hope she is feeling better every day.
We miss her wisdom and warm caring advice.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | They gave me the 3 Emends to take the day of and the 2 days following each of my chemos and it worked for the first one but not so great for the next 2 but I'm sure the radiation played a role. Back then they cost like $100 a pill?
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.
| | | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2007 Posts: 211 | Hi, Amy,
Thanks so much for the update on your mom. My husband had a very similar protocol of chemo drugs (as your mom is having now) as "induction" chemo prior to beginning combined radiation/chemo. The 5FU (he had it for 24/7 for 5 days at a time in combo with cisplatin and taxotore) made him quite sick for about a week or longer each time. Because of taking Emend and having 3 types of chemo and various painkillers, etc. we never really knew what was making him feel lousy but we did think it was the 5FU. I do remember how we would literally lay in bed and count down the last few hours until I could unhook him from the 5FU at the end of the 5 days. When he just had cisplatin along with radiation it was "easy" compared to the multiple chemo protocol(until near the end of radiation when the radiation effects really kicked in) . In retrospect, it's a really difficult protocol that your mom is undergoing. Plus, your mom began this before fully recovering from a difficult surgery.
My thoughts are with your mom and your family as you go through this. Please let us know when she has her next treatment so that we can be thinking of her.
Sophie
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
| | | | | Joined: Aug 2007 Posts: 42 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2007 Posts: 42 | David,
The Emend is $150 a pill now! The manufacturing company is giving mom hers for free since she doesn't have insurance. When we went to fill the script the first time I thought I was going to cry at the cost! The zofran was equally as expensive over $350 for about 5 doses.
Sophie you are right it is a lot for her body. She is doing cisplatin, taxotore and the 5fu. She did radiation 5 years ago but because it caused so much damage she can't have it again. This is her first time with chemo. The doctors are hopeful that since this is her first try she will have good results.
We are trying to get her out on a boat this week before she has her treatment friday. Anyone have any problems being in the sun?
Lost my mother, Minnie, to Oral Cancer October 29th, 2008. I am so thankful she had the OCF to help her through her five year struggle.
| | | | | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Always thinking of you Minnie. Love and light from Helen
RHTonsil SCC Stage IV tx completed May 03
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | The cost of gas is almost as bad as the cost of meds. I remember one day coming home from radiation and my RO's nurse had called in a script for some pain meds and my wife was driving and she pulled into the Walgrens and the pharmacist said "that will be twenty eight fifty" and so my wife handed her $30. Promptly the pharmacist said "no ma'am, that's twenty eight HUNDRED and fifty dollars". My wife said you're crazy and drove off. While I agreed with my wife I was a little concerned about how fast she made that decision to leave me without pain meds. lol
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.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Amy:
If your mom is going to be out in the sun, she must use a very good sunscreen and cover up. Especially if boating with all the reflective rays, use a very high SPF. Alot of people on here have mentioned Nutrogena works really great.
Christine
ChristineSCC 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  | | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | I asked here about 5FU and the chemo doctors here no longer want to use it due to significant "adverse reactions" including, but not limited to one patients demise. Obviously it is a tough drug to handle but from what I have read here it is effective if tolerated. Like the others on this board, I think of your mom often, and am sending positive thoughts and prayers your way.
Sometimes you wonder just when you will catch a break! Enough already!!!! But, we don't get to choose any of this, all we can control is how we deal with it all. Having said that, I know your Mom is a trooper and will handle all of this as well as ANY human ever could!
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Sure is good to hear she is doing good and able to take a ride. I want to add to Malkas curse. May the fleas of 1000 camels infest the bodies of those Drs and Nurses.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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