#77419 07-24-2008 07:28 AM | Joined: May 2008 Posts: 43 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: May 2008 Posts: 43 | My treatment plan 2 months ago was 6 weeks of Erbitux carboplatin and taxol, then 2 weeks rest. Then 7 weeks radiation and chemo the 4 weeks rest then surgery. Well i finished my 6 weeks of chemo with out any problems felt great only acne rash from Erbitux. My 2 week rest is up today but they dont have me starting chemo and radiation till tuesday 5 more days. When i started tumor was 4cm tonsil base of tongue and a huge lemonsized lymphnode 9cm. Chemo had shrunk lymphnode in half. Yesterday morning i called medical oncologist i noticed and felt lymphnode and base of tongue getting quite larger. Nurse said they would call back they never did. I just called again this morning told nurse again tongue and lymphnode have doubled in size in past 2 days and i never got a call back yesterday, Was told there must have been an emergency and she would try to talk to med onc. @ weeks ago after last chemo treatment i told doctor i felt great and how much shrinkage i had and didnt want to stop treatment but they said we have to stick with plan ok but its alright for them to change the 2 week rest and make it almost 3 weeks. My question has anybody else felt rapid increase in tumor or lymphnode(or both like me) growth during treatment break or when treatment stopped? I felt so good 2 weeks ago with all the shrinkage now its back to where i was and tumor in tongue feels worse i hope they call me back i hate to be a complainer.
Tonsil into base of tongue 3to4cm tumor. Giant lemon sized 9cm lymphnode. Squamos cell carcinoma
April 5 diagnosed. June 5 started treatment. Cetuximab Carboplatin Paclitaxel once a week for 6 weeks.Then 7 weeks of radiation plus chemo cisplatin then 4 weeks rest then neck disection was Nov 7 2008
| | | | | Joined: Feb 2007 Posts: 176 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2007 Posts: 176 | Victor,
Be a complainer, call every hour if you need to. First and foremost, it is your life and mental well-being. Do you have any other doctor to call? Any of the docs acting as your quarterback that can help you? All the best. We all know how you feel.
Rob J
6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Victor,
This is your life we are talking about...I think someone needs to start listening and you need to escalate your requests to the office staff to someone that will pay attention. How far are you from your Dr's office? If no one will call back, just show up and be a butt head...this is nuts...you are at least owed a phone call! As a contrast, I can email Bill's MO and usually have an answer back within minutes.
It is time for you to stop worrying about being nice...I can assure you that if anyone in that office had your DX, they would expect more attention!
Hugs (since I sound so rough), Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | 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 | I would go there and sit in his office until I got to see him.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | LOL , David, you took the words right out of my mouth. JUst camp out there until you wear em down.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I'd bring my office and restaurant employees, laptops and cell phones with me and conduct my business right there until they dealt with my butt. Two hours of that crew and they would be begging me to let them see me.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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