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#29134 07-05-2007 01:04 PM
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The following is a message I sent to Petey, and in his reply to me, he suggested that I edit/copy/paste to this particular topic area:
Petey: I found 'Dragan' (Wayne) early on, as well as Minnie in Va. Beach...it appears that these are the only TWO on the forum with SCC mandible, like Buzz has. Last night, I pm'd Wayne in a panic because Buzz woke up strangling, ran to the bathroom and blood was dripping from his mouth! He said he felt like 'something erupted' in his mouth and the taste was horrible. (This is GROSS, but I could SMELL the stench while standing beside him at the sink!) The continued to bleed and spit for about 10 minutes..went back to bed...same thing happened a few minutes later...he REFUSED to go to the local E.R., and of course I was beginning to panic! He stayed up for a while, and I pm'd Wayne, who responded immediately, advising me to get Buzz to E.R....of course, Buzz refused and went to bed. TWICE more during the night he woke up with mouth full of blood clots. I MADE him take a penicillin capsule left over from his biopsy, and MADE him take another one today. He says he felt like maybe an abcess ruptured, and released alot of pressure he had been feeling UNDER the spot where biopsy was done. I have spent HOURS today online and can find nothing definitive to explain this phenomana. Since his diagnosis includes 'necrotic lymph node' there are literally HUNDREDS and possibly THOUSANDS of references online, but nothing explicit that would be helpful. You can bet that I'll be calling the nurse at Baptist Hospital in the a.m. to see if she can assist me. Buzz' surgery date has been 're-scheduled' we were told yesterday, but no new date has been given; the surgeon is out of the clinic until MONDAY. Petey, I can SEE with my NAKED eye that the cancer has spread toward the front of his mouth, under his tongue and even a spot on his inside upper lip SINCE WE SAW the doctor last Wednesday! It is horrible! I'm SO afraid that it is spreading out of control and we STILL don't have a surgery date! Anyway, enough about my problems! THANK YOU for allowing me to VENT! Now, WHAT is the answer to your riddle? I'm usually up most of the night, so if you need to release some steam, feel free! Good night! I hope you'll get some rest! Lois

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06/06/07: invasive (R) mandible SCC; mod. diff; 30+ yrs cigar smoker-quit 10 yrs ago; 30+ yrs; 1 beer/day; Baptist Hosp:06/27; Stage IV; surgery: UNKNOWN;then chem/rad later

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Posts: 29 | From: Central North Carolina, USA | Registered: Jun 2007


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#29135 07-05-2007 01:27 PM
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Emmylou, just want to stick my 2 cents in here-from one caregiver to another- I had many occasions with John when he neded to be seen by a Doc on an emergency basis and he refused to go. Those times absolutely wore me down with worry, not to mention the feelings of ineptitude at how to handle the situation. You may need to have a heart to heart talk with Buzz and let him know what those situations are doing to you health wise and emotionally. You need to stay healthy for him and iat's hard to do if you are under a mountain of stress trying to deal with these surprise issues alone. 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

:
#29136 07-06-2007 02:13 AM
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Emmylou,

I think he needs to be seen immediately by his cancer docs and as my wife told me once when I was refusing to go to the hospital, she said that my ENT told her to have me Baker Acted, meaning she would tell the police or ER people that I was doing harm to myself and they could "observe" me for I think 3 days.

I guess I could tell she was serious enough to do it so I gave in. We patients can be horrible to care for!!


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.
#29137 07-07-2007 02:39 PM
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Posts: 510
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Buzz has been in alot of pain these past few days, but has been reluctant to take anything more than Tylenol until today. The Dr. had prescribed Darvocet and I picked up rx today; he has taken ONE now and gone to bed. The pressure he felt before the 'eruption' on Tues. night has returned, and I fear another episode similar to that one. We are expecting a call from Baptist Hospital clinic on Monday, and hope to know more about a treatment plan after that. It has already been approx. 6 wks since his diagnosis, and absolutely no progress! I am disappointed in Baptist, to say the least! Buzz will only allow me to be mildly aggressive, but I think that's getting ready to change! Please keep us in your prayers! Lois & Buzz in NC


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#29138 07-07-2007 02:48 PM
Joined: Apr 2005
Posts: 2,676
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Emmylou- Mildly Agressive won't cut it! Get your Caregiver from Hell hat on and start making waves. 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

:
#29139 07-07-2007 02:53 PM
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Posts: 1,627
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Emmylou, I was a late stage IV of the mandible and I didn't have any symptoms like you describe your husband suffering from. I'm with Amy.......dig out the Hat from Hell and get him seen ASAP.


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.
#29140 07-07-2007 03:37 PM
Joined: Mar 2007
Posts: 525
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Lois

Are you refering to Wake Forest Baptist Hospital clinic?

Are you insured? Six weeks with a positive biopsy is a bit much, and your symptoms are alarming.

Petey


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#29141 07-07-2007 03:57 PM
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Posts: 510
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Yes, Petey...WForest in Winston Salem. Buzz obviously has Medicare, and is 80% disabled through VAMC. He was going to let VA handle treatment, but VA is so backlogged that no ENT could see him until Mid-July, so VAMC authorized out-sourcing to Baptist. Couldn't get an appt there until June 27; had CT & PET on that date; then July 4 holiday week - no clinic - no doctors 'in'...Now I'm thinking that we've erred by choosing to out source..In answer to your question, VA will pay Baptist and Baptist agrees to accept their payment as "in full". Zero $ owed by us.....Sooooo...obviously "sometimes you get what you pay for"! Buzz has promised that if he does not get satisfactory answers on Monday, including a firm pre-op & surgery date, that he will visit his primary physician at VAMC, Salisbury, on Tuesday. Mama's NOT happy!


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#29142 07-09-2007 05:10 AM
Joined: Jun 2007
Posts: 510
"Above & Beyond" Member (300+ posts)
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Posts: 510
I've been on the phone with the nurses at Baptist this morning. They are now coordinating schedules for the operating room, Dr. Brown and Dr. Sullivan. They promise a call-back before the end of the day with a surgery date! Praise the Lord! Neither of us slept at all last night; Buzz was in too much pain, and the Darvocet hasn't helped. The nurse is calling in Ultram 50 mg to the pharmacy; hopefully this will help. The nurse also said that only a CT scan was done, no PET, as the doctor had originally directed. Keep us in your prayers, please!


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#29143 07-09-2007 10:38 AM
Joined: Mar 2007
Posts: 525
"Above & Beyond" Member (300+ posts)
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Hello Lois

I'm glad you made something happen. You would think with cancer they would treat each patient stat, with or without coverage.

It is a shame someone who has coverage has to "make noise" to get treatment. And the six (6) week wait bewilders me.

I did not want to comment the other day, but Darvocet is like "baby aspirin" to a cancer patient. If the Ultram is not taking away his pain, (I say it will not) ask for something stronger. I had to holler 3 times before I received something that would ease the pain.

The PET scan is another befuddling gray area...

Petey


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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