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Angry and Confused #197352
10-09-2018 05:39 AM
10-09-2018 05:39 AM
Joined: Sep 2018
Posts: 6
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suz47nascar Offline OP
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suz47nascar  Offline OP
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Joined: Sep 2018
Posts: 6
So, I registered for this site on October 2 at the suggestion of a friend and then the next day my Mom, who has stage IV SCC of the tongue and jawline and underwent surgery and jaw reconstruction using bone from fibula back on September 10, was found unresponsive at 4 p.m. on October 3 at the rehab facility to help her wean off the ventilator. They gave her meds Oct. 3 at 3:50 and she was responsive (Mom can't talk as she has a temp trach but she can nod, mouth words, hand gestures, shake head yes and no, etc.) and 15 minutes later, was unresponsive.

She was taken to ER and it's been a time since. She developed sepsis and possibly had a heart attack, all due to a urinary tract infection that went undiagnosed. I was with her the Sunday prior and she kept clutching at her belly and the nurse asked her if she had stomach pain, Mom shook her head "no" and continued to clutch. The nurse asked her if it was her crotch. Mom shook her head "yes". They gave her pain meds. It never occurred to me to have them check for a UTI. My brother visited her the day before all of this happened and she was doing the same thing.

I requested her medical records from this rehab place just to see if a UTI was ever considered. I was told the day after she was admitted to ICU it would be a miracle if she survived. It's almost a week later and she's still fighting. I go from crying to being angry. She is barely responding to commands. She opens her eyes but can't focus on anyone. She did slightly squeeze my hand when I asked her to a few days ago. The goal right now is to fight the infections (she may also have pneumonia now as well). If she becomes stable enough, they want to do a heart cath. An MRI and other testing did not show a stroke. She's been experiencing Afib on and off . I was also told by two doctors that sepsis can cause high troponin levels, so I'm not entirely convinced she had a heart attack. A UTI may cost my Mom her life. The odds were stacked against her to begin with, but she did wonderful through the surgery. She was having issues with the ventilator, but I was hopeful they would be able to help her. She was going to start radiation late October/early November. I wanted to have her home by Christmas.

Just venting....I can't believe all of this is happening frown


Daughter of 65 year old with SCC of tongue and jaw
T4N2M0 - diagnosed July 5, 2018
2 rounds chemo with Cisplatin, Taxotere, fluorouracil - August 2018
Partial glossectomy, mandibulectomy with fibula free flap - September 10, 2018
Re: Angry and Confused [Re: suz47nascar] #197354
10-09-2018 08:21 AM
10-09-2018 08:21 AM
Joined: Aug 2018
Posts: 152
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ConnieT Offline
Senior Member (100+ posts)
ConnieT  Offline
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Joined: Aug 2018
Posts: 152
hugs to you. this is all so overwhelming and scary at times. feel free to vent here...I've done it plenty and it has been so helpful to hear from survivors as they have been there done that on so many levels. I often say, I did not buy a front row ticket to this show but here I am.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: Angry and Confused [Re: ConnieT] #197355
10-09-2018 08:29 AM
10-09-2018 08:29 AM
Joined: Sep 2018
Posts: 6
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suz47nascar Offline OP
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suz47nascar  Offline OP
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Joined: Sep 2018
Posts: 6
Thank you so much. I see a lot of hope and faith on this site. Our journey started beginning of July. She started it all off with a collapsed left lung after chemo port placement. She said "I guess I need to make it interesting for them". It's been a battle ever since.


Daughter of 65 year old with SCC of tongue and jaw
T4N2M0 - diagnosed July 5, 2018
2 rounds chemo with Cisplatin, Taxotere, fluorouracil - August 2018
Partial glossectomy, mandibulectomy with fibula free flap - September 10, 2018
Re: Angry and Confused [Re: suz47nascar] #197360
10-09-2018 11:12 AM
10-09-2018 11:12 AM
Joined: Jun 2013
Posts: 261
alabama
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KristenS Offline
Gold Member (200+ posts)
KristenS  Offline
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Joined: Jun 2013
Posts: 261
alabama
((hugs)) I am SO sorry for all your mother is going through. That's just dreadful. You vent all you need to ... this is definitely a good place for that.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Angry and Confused [Re: suz47nascar] #197361
10-09-2018 11:32 AM
10-09-2018 11:32 AM
Joined: Jul 2012
Posts: 3,122
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
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Joined: Jul 2012
Posts: 3,122
NYC
Suz47nascar,

I’m sorry to hear of your troubles! I was in a similar situation in 2009 after chemo caused septic shock, and then a domino effect of other life threatening conditions, including a collapsed lung, which put me in ICU for two months and hospital for six. It wasn’t until a year later that I had curative treatment.

I wish your mother a speedy recovery, so she may further treatment or hope the surgery was enough!


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






Re: Angry and Confused [Re: suz47nascar] #197362
10-09-2018 11:54 AM
10-09-2018 11:54 AM
Joined: Sep 2018
Posts: 6
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suz47nascar Offline OP
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suz47nascar  Offline OP
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Joined: Sep 2018
Posts: 6
Doctor says he got it all, but wanted to do 5 days a week of radiation for 6 to 7 weeks approx. 6-8 weeks after surgery which puts us at November 10. I really don't see that happening. Since my last post, she is fighting pneumonia now in addition to the sepsis and UTI. Thank you all!!!!


Daughter of 65 year old with SCC of tongue and jaw
T4N2M0 - diagnosed July 5, 2018
2 rounds chemo with Cisplatin, Taxotere, fluorouracil - August 2018
Partial glossectomy, mandibulectomy with fibula free flap - September 10, 2018
Re: Angry and Confused [Re: suz47nascar] #197364
10-09-2018 12:05 PM
10-09-2018 12:05 PM
Joined: Jun 2007
Posts: 10,185
PA
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ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

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Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,185
PA
Im so sorry to read of what your mother has been thru!!! Best wishes to your mother to be able to get past these temporary set backs.


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
Re: Angry and Confused [Re: suz47nascar] #197368
10-10-2018 07:21 AM
10-10-2018 07:21 AM
Joined: Jul 2012
Posts: 3,122
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
Posts: 3,122
NYC
I hope for the best, and hope to have things under control soon. It’s better to delay radiation than to start it, and have to stopped for whatever reasons. .

Good luck with everything!


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






Re: Angry and Confused [Re: suz47nascar] #197372
10-10-2018 05:02 PM
10-10-2018 05:02 PM
Joined: Apr 2018
Posts: 48
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DeniseG Offline
Contributing Member (25+ posts)
DeniseG  Offline
Contributing Member (25+ posts)
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Joined: Apr 2018
Posts: 48
Prayers for your mom.


Diagnosed 11/17 SCC right side of tongue
Surgery 2/18 Partial Glossectomy
Radiation 3/18 - 5/18
Clear PET scan 10/18
Non smoker, occasional alcohol use
Re: Angry and Confused [Re: suz47nascar] #197536
11-05-2018 01:46 PM
11-05-2018 01:46 PM
Joined: Sep 2018
Posts: 6
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suz47nascar Offline OP
Member
suz47nascar  Offline OP
Member
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Joined: Sep 2018
Posts: 6
I'm not sure if this is the correct place to post, but my Mother passed away on October 18. Not from the cancer, but complications from a UTI she had while in a rehab facility to help her get off the ventilator after oral surgery. Very long story. She was admitted to the hospital on October 3. Never really regained full consciousness. I'm still in shock to say the least frown


Daughter of 65 year old with SCC of tongue and jaw
T4N2M0 - diagnosed July 5, 2018
2 rounds chemo with Cisplatin, Taxotere, fluorouracil - August 2018
Partial glossectomy, mandibulectomy with fibula free flap - September 10, 2018
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