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#110457 01-16-2010 07:07 AM
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ElCee Offline OP
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It's been about a week since I last posted and I updated the signature line to reflect Carol's diagnosis. The week had been somewhat productive and then ended being very confusing and upsetting.

She saw the Dental Oncologist on Tuesday 1/12 and Thursday 1/14 she went through Pre Admission Screening for Dental Extraction. Next Wednesday (1/20) she is scheduled for Dental Extraction. Okay, great, we thought, progress is being made, about 10 days after the extraction, if not sooner depending on how Carol heals, the radiation treatment begins......In the meantime, an appointment with Carol's Primary Care Doctor had to be made so she could get a referral for the PEG. Okay fine, no worries. This was last Friday 1/8. (As I had mentioned in a previous post Carol was awarded a full city contract. She was assigned to "Internal Medicine Primary Care & Specialty Center" as her Primary Care Provider.) I called them and was told I had to call Outpatient Financial Services for a primary care doctor. I told them "You" are the primary care provider Carol was assigned to. I called Financial Services was told what I already knew and called AGAIN to Internal Medicine Primary Care and talked to another person. After receiving the apologies for the "newbie" Carol was scheduled to see the PCD on Friday 1/15. Well, she went to the Dr and come to find out the Dr is assigned to the "Community Health Center" and not "Internal Medicine". Carol decided to keep the appointment just to get her referral for the PEG, which meant she had to be reassigned to "Community Health Center" as her primary care. That was too easy to do, just make a phone call to Financial Services and viola she now has a DIFFERENT primary care provider - too easy.

Well the good news is Carol will have an appointment for the PEG before the end of next week, 1/22. The bad news is the Dr wants to see Carol next month. This Dr is just a family doctor, is not specialized in oncology or head and neck cancer, or oral cancer, or tonsillar cancer. Next month Carol will be going through radiation and chemo, will not be up to seeing a "family dr".

I'm getting really ticked off with the treatment of Carol that started to be fantastic and has quickly gone into the toilet. It seems like she's going backwards not forward. Damn it, Carol needs specialized care!!!

The Dr was not friendly, did not provide any kind of info or question why the hell Carol was there to see her instead of the people in Internal Medicine. (Just one more tick on her belt?) The staff is very desensitized, but boy did they jump when I told the nurse Carol has stage iv tonsillar cancer, spread to tongue and lymph nodes, just needs a referral for PEG, etc. etc. etc. They behaved as if a cancer patient was an alien!

Carol's pain is getting worse. She had been getting
473 L of generic lortab, taking 15 ML every 6 hours as needed for pain. 0 refills. She has NOT abused the drug and her pain is becoming more unbearable. The "family doctor" scripted lortab 120 L, 1 ML every 4 to 6 hours as needed for pain. w/1 refill. Hell of a difference in dosage. We had gone to the RO but he wouldn't prescribe, he said go to the primary care doctor to see if she could get anything stronger. Now Carol's right side of mouth is getting sore.

I needed to sound off to somebody, I'm feeling depressed...kinda lost. You can't imagine how Carol feels. Any suggestions, advice, anything would be greatly appreciated. Do I need to push harder? Be firmer?

The initial numbness of learning Carol has cancer and all the information that was thrown at her all at one time has worn off, reality has set in on the both of us. Now it's a matter of "when"...This beast is being very aggressive, beginning to beat Carol down, and she's strong willed as all get out.

Thanks for listening.

Linda


CG/Carol 57;SCC Stage IV L Tonsil T4N2bM0 12/2009
Recur 7/2010 - 2cm mass Invasive SCC L Floor Lower Jaw
Surgery 8/10 - Trach,ND,p. mandibulectomy,pec flap
ypT4aN0 HG Mucoepidermoid carcinoma
2nd Recur 1/18/11 - Tumor lower left lip
Surgery 2/9/11 - Canceled - Inoperable
3/29/11 - Died




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Linda,

You are always allowed to push harder where this disease is concerned. I advise you to go "UPSTAIRS" with your concerns. Find out who the administrator is at Internal medicine and insist that Carol get the proper doctor for her treatment.

I have a GP in town here who handles the more mundane medical issues but it is the RO and ENT that handle all of the cancer specific issues.

You are in the system now so be a squeeky wheel. They will respond if only to stop hearing the constant squeeking.

kelly


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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Posts: 108
ElCee Offline OP
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Kelly,

Thanks for your advice. I was planning on going "upstairs" Tuesday am. This is ridiculous. The ENT specifically told Carol that he was her primary care doctor. There is a lack of communication somewhere. I'll get it straightened out next Tuesday. This is all new territory and I better figure it out real quick. Thanks.

Linda


CG/Carol 57;SCC Stage IV L Tonsil T4N2bM0 12/2009
Recur 7/2010 - 2cm mass Invasive SCC L Floor Lower Jaw
Surgery 8/10 - Trach,ND,p. mandibulectomy,pec flap
ypT4aN0 HG Mucoepidermoid carcinoma
2nd Recur 1/18/11 - Tumor lower left lip
Surgery 2/9/11 - Canceled - Inoperable
3/29/11 - Died




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If Carol's pain is that bad maybe the fentanyl patch would be something that would help. Here's what I take....

50mg Fentanyl patch (changed every 3 days)
6ml Nurontin 3x per day
6ml Oxycodone as needed up to 4x per day on bad days (I take usually 1 or 2 times per day)

I have lortab and occassionally take 15ml but never when I take oxycodone

I am in no way a doctor or medical professional, Im just a 3x OC survivor, sounds like she needs more meds. Nobody should have to hurt, it does not help the patient one bit. For the lortab, ask the doc for a pint of it with refills and try the patches. That should help.

Best of luck with everything!!!!!


Christine
SCC 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 smile
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Linda,

Get militant woman. If YOU are not as agressive as all hell things won't get done. The medical professionals at most of the facilities I've gone to are just like you've said...desensitized. They have no "buy-in" with Carol because if they did they would go out of their way to make sure she got what she needed when she needed it.

Same as your situation, my RO wouldn't touch scripts, nor would my ENT..that was all left to my MO..so touch base with them. Your GP has no expertise here at all, if this person can't be used as an advocate to get Carol what she nees when she needs it...there's no reason to mess with them. Speak up here and be assertive, these chumps won't listen or act unles YOU take the reigns. These people are working for you now...so get into "boss" mode and start laying down your expectations. If they aren't performing how you think they should be...let them know...ASSERTIVELY. If they don't listen start yelling up the ladder.

Go Get Em.

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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ElCee Offline OP
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ChristineB

Carol was scripted 1 pint lortab elixir dosage 15ml but NO refills, which I thought was nuts considering, oh I don't know, she has CANCER! I'll look into the meds and come Tuesday I'll demand proper meds for her pain. Pain Management IS part of the treatment, after all. I've been reading your posts along with others here and I really do appreciate and value everyone's experiences, good and bad. You all DO help others....

EricS

LOL. I'm a 15 yr Navy veteran. Airdale. I've been known to ruffle a few feathers and shoot both barrels.

Carol has an ENT, DO, RO but no MO...Someone really dropped the ball at Carol's expense. I've been fuming about this all weekend, but have settled down a bit. Tuesday will be here soon enough.

Linda


CG/Carol 57;SCC Stage IV L Tonsil T4N2bM0 12/2009
Recur 7/2010 - 2cm mass Invasive SCC L Floor Lower Jaw
Surgery 8/10 - Trach,ND,p. mandibulectomy,pec flap
ypT4aN0 HG Mucoepidermoid carcinoma
2nd Recur 1/18/11 - Tumor lower left lip
Surgery 2/9/11 - Canceled - Inoperable
3/29/11 - Died




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Linda,

I love it, fire when ready. If Carol is starting chemo next month as you've posted then there has to be an MO. I didn't have my first appt with mine until shortly before I started chemo yet at that point she took over the duties of all meds and my overall health. I used my MO as my Primary Care Provider for over a year until I decided to find a local GP. My ENT still was the head of my cancer care...but left the drugs and drug interactions for my MO.

At this point I'd find out who is going to be her MO and get an appointment set with them as soon as you are able. From that point I'd cut out the GP altogether. The sweet thing about dealing with DR's is you get to decide who you work with.

Last edited by EricS; 01-17-2010 09:32 AM.

Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
Joined: Dec 2009
Posts: 108
ElCee Offline OP
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Just "shot off" an email to the ENT. Maybe I'll hear something before Tuesday but this is a 3 day weekend for many folks. I'm off to rest my brain and read a book.

Linda


CG/Carol 57;SCC Stage IV L Tonsil T4N2bM0 12/2009
Recur 7/2010 - 2cm mass Invasive SCC L Floor Lower Jaw
Surgery 8/10 - Trach,ND,p. mandibulectomy,pec flap
ypT4aN0 HG Mucoepidermoid carcinoma
2nd Recur 1/18/11 - Tumor lower left lip
Surgery 2/9/11 - Canceled - Inoperable
3/29/11 - Died




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Posts: 108
ElCee Offline OP
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I went "upstairs" on Tuesday. First I went to Patient Relations and was informed Shands made some policy changes effective the 1st of this year regarding their "in-house" Primary Care Providers. Geez, it would have been nice if Carol had been informed of that from the get go, easily remedied and one less thing to worry about. I was given names and numbers within the Community Health Center (GP) that would better address concerns with Carol's care. My 1 on 1 with the Head Nurse was over an hour, extensive notes being taken by the nurse. By the end of the hour Carol had an appointment with Interventional Radiology for her PEG, "official" referral by GP to Oncology and script for her Lortab elixir by the GP corrected. But, when I got the script from the GP the dosage was wrong, again! (The Head Nurse listened, took notes but obviously the GP didn't!) That's twice in 2 business days. Right qty 473 L but dosage was 1 ML vice 15 ML.....Script corrected...The GP wants to see Carol 2/24...NOT gonna happen. IMHO GP is inept, Carol will be in rad and will not be exposed to more germs than need be. Carol will cross that bridge later, on the back burner for now.

I believe the whole PCP scenario is the GP being the watch dog for patients with city contracts. Correct billing, no unauthorized procedures, etc. I had googled Shands when Carol was first DX'd and found internal audit reports from a few years ago citing city contract billing errors. Who's the watch dog for the watch dog?

Red Tape, gotta love it....NOT

Linda


CG/Carol 57;SCC Stage IV L Tonsil T4N2bM0 12/2009
Recur 7/2010 - 2cm mass Invasive SCC L Floor Lower Jaw
Surgery 8/10 - Trach,ND,p. mandibulectomy,pec flap
ypT4aN0 HG Mucoepidermoid carcinoma
2nd Recur 1/18/11 - Tumor lower left lip
Surgery 2/9/11 - Canceled - Inoperable
3/29/11 - Died





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