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PaulB Offline OP
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Thanks Cheryl. I'm like the lone ranger, I do everything alone lol. My hemoglobin may go lower based on past experience, current treatment, and my last transfusion was in May when it was 6, with transfusions usually lasting 5 months, longer than the shots last at three months I found, and as you probsbly know, RBC continiously die off, are replaced, and have a cell life between 90-120 days, so it's due, and with surgery, radiation in October lowered it also. My iron is ok, it's my hemoglobin that's low. As far as transfusions, it's a catch 22, injections of procrit, epogen, similar also, which run the risk of recurrence, speeding up cancer. I saw a study regarding HNC with transfusions, non transfusions, and risk of recurrence was 35% for those not receiving blood transfusions, and around 75% risk of recurrence for those that did. Then anemic patients have less survival rates, then those that aren't, plus being more radio resistant.


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






Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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"OCF Canuck"
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Joined: Dec 2010
Posts: 5,260
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Yikes... !!!! Do you take b12?


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Jul 2012
Posts: 3,267
Likes: 1
PaulB Offline OP
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No. My B12 is in range now, and I get tested for that too. It's from the chemo I had in 2009, and the bone marrow suppression it caused, Chronic Kidney Disease from chemo, plus I have an inherited metabolic disorder, G6PD, whereby my RBC get destroyed faster then they can be replaced, called hemolysis, causing hemolytic anemia, from certain medications, foods, illnesses, stress, anything oxidative, even chemo, radiation, which can be mild to life threatening, which happened a few times.


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






Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
We need to put you in a plastic bubble dude...


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Dec 2003
Posts: 2,606
Likes: 2
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Paul, don't forget the whole vagus issue. Your breathing is compromised and one very good thing is "stacked breathing" on an ongoing basis. Keep an eye on serum chloride, O2 sat and CO2. The chloride can indicate long term CO2 exchange issues from shallower breathing and O2 sat/CO2 from the lungs is the best place to measure that early, much like reticulocyte counts for (immature) red blood cell production from the marrow. Load up on grass fed lamb marrow or wagyu marrow for the CLA punch you need for healthy marrow. It's the tastiest source.

Maybe a baseline lung capacity study via spirometer would be in order? Breathing issues can creep up and the lungs and/or kidneys can easily be the casualties long term. Very little of this is understood beyond neuromuscular breathing specialists such as those used by ALS patients.

Your Friend,

Tonto.


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
Joined: Jul 2012
Posts: 3,267
Likes: 1
PaulB Offline OP
Patient Advocate (old timer, 2000 posts)
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Posts: 3,267
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@ Cheryl, thankfully I don't get sick often, if at all, but when I do, I make up for lost time lol.

Good one Tonto Lol. I'll keep this in mind. This occurred before my last surgery too, but doesn't mean the vagus nerve wasn't effected by radiation. Probably a combination of factors, the septic shock too causing critical illness myopathy. I still have muscle loss, control in my legs. I need to add a few doctors to my specialist list, but already have 8, so in no rush.

I received Medicare statement, and Proton Therapy cost $7,151 a day, not including the $6,000 for the Mask, CT simulation. Glad I have no deductibles, co-pays or any out of pocket expenses, but do pay $600 a month for full Medicare coverage.


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






Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
I can give you my neuro-pulmonologist if you like, Paul. It seems to be a race to see if he retires before I no longer need him. I think my lungs are giving out now. Sure snuck up on me, just since November. Transplant may be one of the only options, just not for me. We talked about a trach and ventilator a year ago but I'm not sure that is even an option now. I sure liked it a lot better when it was just muscle weakness and I worked awful hard to regain incredible lung capacity and even built the diaphragm back to near complete capabilities.

Oh well, I guess we see what tomorrow brings. I still have a freezer full of ribs ready to smoke when spring finally gets here. O.o


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
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
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Joined: Dec 2010
Posts: 5,260
Likes: 3
Yoga? deep breathing exercises? push yourself. Will they give you a transplant with a cancer history? Hopefully. Hugs and feel better - both of you.

Paul Don't wait... do what you can. NOW.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Joined: Dec 2003
Posts: 2,606
Likes: 2
[quote=Cheryld]Yoga? deep breathing exercises? push yourself. Will they give you a transplant with a cancer history? Hopefully. Hugs and feel better - both of you.

Paul Don't wait... do what you can. NOW. [/quote]

Unfortunately for a small number of people, Cheryl, rads causes neuromuscular problems that include compromised breathing to the degree it literally destroys the lungs. It presents similar to COPD but if treated early like COPD it can cause sudden death. As it progresses, late stage COPD and the lung issues are the same. Transplants are not an option partly because of the cancer and partly because of issues with heart rate, blood pressure and breathing from vagus nerve/medulla oblongata issues.


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
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
[quote=Lisacamp007]I am glad to hear NeutraSal is helping. [/quote]

Lisa, I was too lazy to go back and look who mentioned this because the subject contains so many pages. From the website, it's hard to determine exactly what it is prescribed from. It sounds pretty versatile and can help with several things.


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
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