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Joined: Apr 2006
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Hi Walt, Glad to hear that Pat is starting to come to the other side of treatments. I think your solution to the skin irritation was very creative and I really hope it works for her. Keep the hydration and nutrition going and this will soon be a surreal memory. Regards JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
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Dear Walt, What a post! and it's so good to hear from you and to hear that Pat is doing better. Today 3 sips of tea, next month, maybe an English High Tea party. John had a weekly infusion of Erbitux for close to 8 months so we spent alot of time dealing with the "Erb rash". His Chemo Doc only had 2 solutions - stop the tx for a week or so and try antibiotics. How I wish I had known about your approach then! I really encourage you to print your "rad. burns + rash tx." and give it to the Chemo Doc. and send it to the folks at ImClone for their reaction. You two are a beautiful couple and a wonderful example of what love is all about.Thanks for sharing. Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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"OCF across the pond"
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Hi Walt

how great to get an update on Pats treatment and progress,and what a lucky girl she is to have a sweetheart like you.
I wish you continued god speed in the recovery and hope all is well.

Liz in the Uk


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.
Joined: Mar 2007
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Hello All,

I thought I would give another progress report.

Pat finished radiation/Erbitux Tx on 5/2/07, so we're now four and a half weeks post treatment. There were days that I thought would never end, while other days seemed to whistle past. Overall, I'd say that the whole ordeal has gone very quickly looking back on it.

Collectively and individually our spirits and mental outlook have been positive and upbeat. We've drawn so much strength, encouragement, and inspiration from the folks here at OCF as well as doctors, nurses, friends, and family. The many prayers and awesome support have made such a difference.

Slowly, but surely, Pat's Erbitux rash and radiation burns on her face, nose, chin, neck, and back of her neck are healing. In fact the only area that's still bad is the area on the right side of her neck where they really cooked the nodes and the primary tumor site. We've tried many things, but the one I keep going back to is the Bag Balm. It still gives Pat almost instant relief once I put it on the burned areas.

Pat still cannot eat anything by mouth, so I'm still feeding her three cans of Carnation VHC per day through her peg tube. The med-onc was so impressed at how well Pat has maintained her weight throughout this whole ordeal that he now routinely orders the Carnation VHC for all of his peg tube patients. Also, I've been able to suggest this to numerous other patients that we see at the IV infusion center. They are also experiencing very good results with the VHC. From what I've read, I expect it will still be a few more weeks until Pat is able to eat normally. Any advice from others on this subject would be appreciated. Pat is anxious to be rid of the peg tube, but I must also say that without it she would not be here today in my opinion. I guess it also goes without saying that we're ready to resume our "normal" lives again - depending upon what "normal becomes over the next few months.

Another treatment option we've had enormous success with is getting additional IV hydration each day. I've been taking Pat seven days a week for the last several weeks for IV hydration. Each day she gets 1 liter of normal saline infused over two hours. Also, on those days when nausea was an issue she got Zofran through the IV as well.I spoke to the med-onc about the burns/rash on Pat's neck and as a result the med-onc ordered Decadron two days per week to help heal the burns for the past two or three weeks. (Decadron is a very strong steroid which also has an anti-nausea effect.)

On Monday we'll be going for the first follow up PET/CT after treatment. We'll then meet with the rad-onc on Thursday to go over the results and see if we got it all. As I've said so many times the past few months, if we get a good report we will Trust the Lord and if we get a bad report we will Trust the Lord - either way we will Trust Him no matter what.

So, that's my little update. I will keep you posted as we progress. Thanks again to all of for your support, prayers, advice and input. You've been such a blessing to us. We will continue to hold you all up in our prayers as well. God bless you.

Walt


------------
CG to my wife Pat. SCC base of tongue. Dx 2/07 - T2N3bM0. Single lymph node dissection 2/07. Tx started 3/07. Expecting 8 rounds of Erbitux and 30 to 35 rounds IMRT radiation when complete. Trusting the Lord no matter what.
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Man, I gotta get me a commission on that VHC stuff.


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: Mar 2007
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David...............great call on the Carnation VHC. It's made all the difference with Pat's ability to maintain her weight. I agree with Brian that it would be great if they would become a sponsor of OCF. If I can help please let me know.

Walt


------------
CG to my wife Pat. SCC base of tongue. Dx 2/07 - T2N3bM0. Single lymph node dissection 2/07. Tx started 3/07. Expecting 8 rounds of Erbitux and 30 to 35 rounds IMRT radiation when complete. Trusting the Lord no matter what.
Joined: Sep 2006
Posts: 8,311
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Walt and everyone,

I have made numerous calls, so much so I talked to the same CSR on the phone the other day. She told me she remembered me from a few weeks ago.

I just can't seem to reach the right person to make my pitch to. I plead with every CSR I talk to to have someone return my phone call to no avail.

I won't give up. I take it as a good sign she recognized me. Maybe they will get soooo tired of hearing me, they will finally pass the buck.


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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