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#179774 05-02-2014 08:49 AM
Joined: Nov 2002
Posts: 3,552
Gary Offline OP
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Does anyone have any experience with liquid probiotics? What brands are cost effective and efficacious?

I almost clogged my peg tube the morning with ground up Lactobacillus in powder form


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Gary #179776 05-02-2014 10:22 AM
Joined: Jul 2012
Posts: 3,267
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How is your immune system? In immune compromised individuals they could be dangerous, otherwise in healthy individuals they may be ok. Some doctors may recommend, some don't. The refrigerated types are best, check expiration dates. I forget how any millions, 5 sounds familiar, of active bacteria they should have.

http://ajcn.nutrition.org/content/83/6/1256.full


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
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 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Gary #179779 05-02-2014 03:48 PM
Joined: Nov 2002
Posts: 3,552
Gary Offline OP
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Immune system is good was able to hold pneumonia at bay for a 1 1/2 years. I'm 11 years out of treatment. I am also looking for liquid B12 since I have a serious deficiency


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Gary #179783 05-02-2014 04:48 PM
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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That's good! I'm not familiar with the liquid B12, but the tablet B12 is not effective, but I'm no expert. The sublingual is better than pill, the nasal spray, which is newer, is a prescription, and this and the injectable type may be best. I gave myself a few intramuscular injections, in the shoulder, when my B12 was deficient.

I remember the liquid B12 now. Was in a small bottle with an eye dropper, and would put it under my tongue prior to working out. Tasted like Ginseng.

http://www.nascobal.com/


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
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 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Gary #179784 05-02-2014 07:17 PM
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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With any vagus nerve issues, B12 deficiency is one symptom, as well as anemia. Most people with a vagotomy require injections for life. Trauma, fibrosis, etc., to the vagus can also contribute to B12 deficiency.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Gary #179787 05-02-2014 09:37 PM
Joined: Nov 2002
Posts: 3,552
Gary Offline OP
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Thanks Ed,
So maybe its just more radiation damage and not MGUS (monoclonal gammopathy of undetermined significance). Am I wasting my money buying liquid B12? It can be administered sublingually as well.

Paul,
I was taking a sublingual tablet and it seemed to be working but I was aspirating the contents of the tablet. It colored the stuff I was hacking up from my lungs pink. Just like a toilet leak detection dye tablet ;-)


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Gary #179803 05-03-2014 12:14 PM
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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I don't think the digestive system will give you much usable B12.

B12 deficiency is common long term. It may bounce around but mine finally settled after 3 years. B1 I had to go with weekly injections for 4 weeks but it's been fine for a couple of years now. I believe the B1 deficiency that affects nerves the most caused issues with the vagus that ended up with a diagnosis of dysautonomia or completely out of whack autonomic nervous system. Much like what you're experiencing with the cardiovascular system I also experienced in almost every autonomic system in the body including heart rate, blood pressure, digestion, swallowing, breathing, hormone loops out of balance and even a large amount of muscle atrophy head to toe. I believe the muscle loss is from cardiovascular deficiencies.

I've been aspirating for quite some time also. All the increased secretions from the lungs trying to fix that has almost destroyed the lungs like advanced stage COPD. They wouldn't consider a feeding tube because my lung capacity was too low for surgery and my overall condition wasn't good enough back in the fall of 2012.

This all began back in about 2009 or 6 years out.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Gary #181585 05-08-2014 09:08 PM
Joined: Nov 2002
Posts: 3,552
Gary Offline OP
Patient Advocate (old timer, 2000 posts)
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Posts: 3,552
I was on oxygen for quite a while in the hospital but my blood oxygen levels returned to acceptable levels before I was discharged. They were going to discharge me with an oxygen bottle but changed their minds and cancelled it. Are you on a feeding tube now or can eat eat orally? I am getting swallowing therapy so next month we roll the dice and repeat the video fluoroscopy.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Gary #181593 05-09-2014 09:08 AM
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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I am able to eat everything by mouth and just deal with the pneumonia. My oxygen fluctuates but because of long term lung gas exchange issues I avoid oxygen. I did spend most of 2012 on supplemental oxygen. My problems were more related to neuromuscular breathing issues with weakened breathing and swallowing muscles involved.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Gary #181596 05-09-2014 11:50 AM
Joined: Mar 2006
Posts: 90
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Mar 2006
Posts: 90
Gary/Uptown,
I am curious about your aspiration pneumonia experience as well as your reliance on supplemental oxygen. My Dad 5+ months out of his second round of chemo/radiation treatment for this beast he has been on oxygen for about the last 6 weeks when he was diagnosed with aspiration pneumonia. The doctor had original said he would be on it a month and is now saying he will be on it for the rest of his life?!?! We are so frustrated with doctors that seeing another just makes us nausea.........


Caregiver to Father:Stage III unknown primary; modified left side neck dissection 2/2006; 8 wk trmts of Erbitux 3/2006 with-37 radition treatments; 11.2010; biopsy of base of tongue results questionable. 9.2013 tumor on left side of tongue; squamous cell cancer. 10.2.2013 Hemiglossectomy(1/2 tongue removed) with reconstruct tongue using left thigh tissue;surgery included IORT.
25 additional IMRT radiation trtmts & 5 wks/chemo. Carbo & Taxol combo.NPO;100% PEG depend;aspiration pneumonia 3/2014
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