| Joined: Mar 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2013 Posts: 40 | Do any of you make your own protein shakes? I got my Dad some weight gainer protein powder and it says on the side of the container "do not use if you have a medical condition." Is that written on all of them? You think this is safe for him?
Brandi, daughter of: Jack, age 69, non-smoker, BOT primary, Stage 4, HPV+ 1/28/2013: Surgery. All cancerous masses removed. Dad is CANCER FREE!!! 2/26/2012: Beginning of TX. Weekly chemo: Carboplatin and Taxol. Daily RT (about 40 total) 4/25/2013: Will be last day of TX, both chemo and RT | | | | Joined: Mar 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2013 Posts: 40 | My friends say it's a disclaimer they put on all those products and since he doesn't have any dietary restrictions it shouldn't be a problem. Agree?
Brandi, daughter of: Jack, age 69, non-smoker, BOT primary, Stage 4, HPV+ 1/28/2013: Surgery. All cancerous masses removed. Dad is CANCER FREE!!! 2/26/2012: Beginning of TX. Weekly chemo: Carboplatin and Taxol. Daily RT (about 40 total) 4/25/2013: Will be last day of TX, both chemo and RT | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | I have used high protein whey powder for several years. Protein is very important when trying to heel and this will help your father get the protein he needs to speed his recovery. ChristineSCC 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 | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I would see a doctor before adding any supplement. They can do blood tests too to see if his levels are deficient, and if any is needed or would be dangerous. Too much protein puts added stress on the organs, especially the kidney's to rid the ketones in the urine, and this can cause dehydration amongst other problems. Your body can only assimilate 23 grams of protein at a time anyway. Another factor, is some of these bodybuilding proteins, at least in the recent past, had steroids in them, and a bunch of other potential harmful chemicals, herbs, and my doctor had warning signs about creatine, a popular added supplement in many.
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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Paul is correct!
Sorry I should have said that in my previous post. Always ask the doc before making any changes or trying anything new like this. Never know how it could work with something the patient is already using or some medication they take.
Thanks Paul! ChristineSCC 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 | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Paul, where is the Like when you need it. Good post. The other caution with protein is pancreatitis. Many people believe in minimum of 1 G protein/ lb of weight. That is good if you have enough activity to use it.
Ed
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: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Definitely check with your dr. Or dietician. A higher amount of protein is usually needed during and after treatment or promote healing. Try to avoid protein powders that have a lot of chemicals and fake sugar substitutes. Best of luck,
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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | A topic hitting my current bullseye, researching and making my own protein/carb powder mix.
Many comments here are familiar and generally what I am following to create my mix. What lead me down this path was all these added things added to commercial protein powders and sent me off sourcing the raw materials as much as possible.
Where i am right now is whey protein isolate is about as pure a protein powder you can obtain in the marketplace, in consumable quantities to us; that is, less than 50 pound bags. It is 80%-90% pure. One ounce (28.4g) then equates to about 23-26 grams protein and about 100 calories.
Carbo content is coming from starch based maltodextrin with a DE in the 20s so not much sweetness either. The powder is 100% so 28 grams of carb.
Now, last part to make get a bit more sweetness into the mix and that is where I am presently exploring various sweetening ingredients, from sucrose/glucose, to fructose and HFCS, as well as natural fruits and juices.
My current situation is I am week 5 of rads and still able to swallow, drink water, eat puree foods, smoothies, milkshakes, etc. There is definitely pain associated during swallowing when zero medications but quite acceptable with a low dose of hydrocodone.
The goal is to create something that has high caloric density yet still can be swallowed without being an overly thick mass and hopefully have some decent taste as well.
Second option is to allow less caloric density and less viscous and use the concoction as my regular sipping liquid all day, just keep a few ice cubes in there to keep things cool but not frozen. Or I guess I can use it for smoothies to if I need/want a frozen texture but that gets a bit harder to consume for me, cool is fine.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Wow, you've been busy! Why the maltodextrin? I could see it after a workout in some amount but rarely see the levels you are talking about. It has twice the glycemic index of sugar and runs through the system very fast. It could have benefit as a complex carb but unlike the whole grains, it is absorbed quicker. As a drink to sip on through the day I am not clear why you want it. Just basing that on my experience in the food industry. It is mostly used for a favorable texture or smoothness to the mouth.
Thanks for doing the work. I am trying to get 90 g or more protein beyond foods a day and looking for some weight gain without packing on visceral fat. I usually consume 2-3 shakes a day and try to bike an hr 3 x a week, walk 1-3 miles a day and try to hit the gym 2-3 hrs 2-3 x a week. If I don't pack on calories I can lose 1-3 lbs a day pretty easily. If I work in some complex carbs I can keep it in check.
Ed
Ed
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Brandi,
I'm not a fan of the "weight gainer" protein mixes that have whey in them. They tend to have a crap ton of sugar in them and that's not conducive to keeping or maintaining lean muscle mass during treatment due to the effects on blood sugar and how high your father's cortisol levels must be.
I'd recommend an organic whey protein powder as whey has the fastest uptake and highest leucine content of the other forms of protein. As far as doseage I'd be looking at 1.15-1.5grams of protein per pound of bodyweight daily as his body is in massive demand of amino acids during and recovering from treatment/surgery
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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | The maltodextrin is convenient and maybe a leftover from initial attempts to cobble together a base foundation of powder based nutrition staple (not supplement)to get me through chemo-radiation where I know most lose big poundage and most end up on a PEG which I am trying to avoid at all cost. Also, it was a fast and easy way to get calories added to the mix but with agave and the protein maybe I can cut the maltodextrin back and still pack a decent caloric punch. Also, as you state agave has better GI properties so that would help even more if I use the daily sipping liquid. So far week 5 of 7 and lost less than 10 pounds from peak weight. The sipping thing is an idea to combine a way to get sufficient calories and nutrition down the gullet and also meet the daily hydration requirement. Drinking plain water is slightly painful and something with some coating effect is much smoother going down. I forgot to include this great link I tripped across; something that I have been looking for to answer all those sugar/complex carb questions. http://www.corn.org/wp-content/uploads/2009/12/NSFC2006.pdfMy son is into power building so much of what I have cobbled together is scoops of stuff he has but so much of those products have many additives I want to go simple. Having said that, I forgot to add BCAA and other essential amino acids that are usually added to the premixed power builder powders. Any suggestions on those or just add some amino acid supplement powder to the mix? don
Last edited by donfoo; 05-14-2013 10:28 PM.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Paul, Actually it isn't the protein in a high protein diet that puts stress on the organs, it's the keytones. When your body doesn't have sufficient glucose for energy it will break down adipose tissue (fat) into keytones for energy and they are harder on the engine to run on so to speak. "Ketogenic" diets are those that drastically reduce carbs in the system while increasing the percentage of dietary fats and proteins. If you made sure your body has enough carbs to process an increase of protein, you run just fine really. Example: your macro nutrient breakdown was 40% protein, 30% fats, 30% carbs, your body would have plenty of carbs to process protein, and enough fat content for optimal hormone production. Dr. Layne Norton, PhD out of the University of Illinois in Nutritional Science actually disagrees with the amount of protein your body can process at any one time too, which between 20-30gs has been the long standing rule of thumb. Here's his paper on it in 2009 before he got his PhD. http://www.abcbodybuilding.com/protein_size_&_frequency.pdf
Last edited by EricS; 05-14-2013 10:31 PM.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Ed,
Maltrodextrine and Dextros are two simple carbs used in weight training to unbalance blood sugar to promote hunger. Weight lifters will use it after their workout to help make them hungry to eat soon after a workout where they were sucking on a protein shake 2 hours before and then during their workout.
Weight lifters live in a world of very high protein intake, which retards hunger, this is a way to get around that. Consequently it also eases nausea as the body won't feel nauseated when hungry. Great tip for those going through treatment, but only use it in moderation due to the need for mostly stable blood sugar needed for protein synthesis.
Last edited by EricS; 05-14-2013 10:48 PM. Reason: always spelling
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 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Don, I would have to defer to Eric. I get my amino acids from quinoa and looking at jumping to kamut. I would not suggest you even try swallowing either of those. I don't think anything good would come out of that. As far as sipping I would consider what Cheryl said about Stevia instead of maltodextrin. You would get the sweetener plus phytonutrients. The down side is you would have to find more calories. Have you considered any nut butters? Almond butter would be a good one. Some good fat, protein and calories. I also use Green Stuff. Phytonutrients, veggies, spirulina, chlorella, etc. It has a moderate level or ORAC units @ 10,000/serving. I have read several articles over the years suggesting antioxidants should be avoided during chemo and radiation as high levels may interfere with both. I personally get my blood checked every 2-3 months and adjust my diet to address any abnormalities. I believe our bodies respond better to nutrition from foods. Just my opinion and certainly understandable why that doesn't workf for everyone especially with compromised swallowing. I also think corn was used to trick the White Man by the Native Americans.  No matter what the industry says, HFCS is the single worst thing ever introduced into food. Studies are just showing how bad it is. It changes the brain chemistry and creates more hunger or craving for more sugar and as Eric pointed out above, sugar does not help much of anything and rather harms us in many ways. Ed
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Here's one of my shake recipe's that I'll share as I'm still writing up my nutrition post I promised David.
1 scoop 100% Whey protein powder (I prefer just plain organic, but any will do) 1 cup 100% Whole Grain Oatmeal 1cup blueberries 2 tblspoons Flaxseed Meal Water to desired consistency
583 calories, 41.07g of protein, 82.01g of carbs, 13.48gs of fat
You can switch the flaxseed with Peanut Butter and get
713 calories, 45g protein, 84g carbs, 25g fats which is one of my favorites.
I put this in my Vitamix(which is a must for those of us on liquid diets due to how finely it will blend the ingredients) and go to town. I also usually put 1.5 cups of organic baby spinach in the above shakes to get my greens.
Enjoy
Last edited by EricS; 05-14-2013 11:08 PM. Reason: added
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 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | [quote=EricS]Ed, Maltrodextrine and Dextros are two simple carbs used in weight training to unbalance blood sugar to promote hunger. Weight lifters will use it after their workout to help make them hungry to eat soon after a workout where they were sucking on a protein shake 2 hours before and then during their workout. Weight lifters live in a world of very high protein intake, which retards hunger, this is a way to get around that. Consequently it also eases nausea as the body won't feel nauseated when hungry. Great tip for those going through treatment, but only use it in moderation due to the need for mostly stable blood sugar needed for protein synthesis. [/quote] Maltodextrin although a simple carb in nature is actually considered a complex carb just because of the high glycemic index at about twice refined sugar. You mention nausea and most people I know that use maltodextrin complain of nausea, constipation or diarrhea. My experience has been lack of hunger and nausea from too much protein. I sometimes forget how much protein I am eating vs drinking. Thanks for the explanation. I think I understand more about my hunger gaps after protein. I suspected that was going on but wasn't sure till I saw it in your post...correctly spelled I might add.  Ed
Last edited by Uptown; 05-14-2013 11:08 PM. Reason: Additional Info
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Ed, I just assumed due to their ridiculous GI rating that they were a simple carb. My experience is just with maltrodextrine and it's made me hungry every time within about an hour of working out.
I get over 1g/lb of bodyweight in protein now, yesterday I logged 212g's total of protein so trust me I understand the nausea and hunger issues associated with it. Oy.
I actually get tired of eating and I'm on a calorie restricted plan right now to cut my bodyfat to under 10%, I'm around 11% now, looking for 8.5.
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 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | [quote=EricS]Here's one of my shake recipe's that I'll share as I'm still writing up my nutrition post I promised David.
1 scoop 100% Whey protein powder (I prefer just plain organic, but any will do) 1 cup 100% Whole Grain Oatmeal 1cup blueberries 2 tblspoons Flaxseed Meal Water to desired consistency
583 calories, 41.07g of protein, 82.01g of carbs, 13.48gs of fat
You can switch the flaxseed with Peanut Butter and get
713 calories, 45g protein, 84g carbs, 25g fats which is one of my favorites.
I put this in my Vitamix(which is a must for those of us on liquid diets due to how finely it will blend the ingredients) and go to town. I also usually put 1.5 cups of organic baby spinach in the above shakes to get my greens.
Enjoy [/quote]
LOL...you add agave nectar and that's pretty much my breakfast. I use organic Bob's Red Mill thick cut oats with cinnamon for many reasons like antifungal for thrush, keeps blood sugar in check, natural blood thinner and a few others and I add ginger to help regulate body temp. My metabolism is so whacked right now and if I walk a mile before breakfast vs eating first, I can lose up to 2 lbs for the day. If my weight slips I make sure and eat as soon as I get up. I eat every 2-4 hrs if I can.
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) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Eric,
Your next mission should you choose to accept it:
Nutritionally building muscle after atrophy. I can get some to refire but it doesn't last. If I skip 5-7 days working some refired muscles they totally atrophy. The only things I haven't tried are creatine and steroids. I'm leaning toward trying them both if I can't gain any more bulk. 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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Ed, I'm actually doing just that as I'm rehabing the paralyzed right half of my face as I'm finally regaining motor function after a nerve graft  . Where I'm cutting weight right now for body fat percentage when I'm done in the next few weeks I'll switch up my diet to start to build muscle where I'm sure I'll see it in my face. That's the theory anyway. Building muscle I would go with the 40% protein, 30-30 split between carbs and fats mentioned above as it really promotes the anabolic pathways to rebuilding and gains, in my "humble" opinion. I would watch the dosages of ginger and cinnamon (I take both as well) as they are both blood thinners
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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | [quote=EricS] 1 scoop 100% Whey protein powder (I prefer just plain organic, but any will do) 1 cup 100% Whole Grain Oatmeal 1cup blueberries 2 tblspoons Flaxseed Meal Water to desired consistency
583 calories, 41.07g of protein, 82.01g of carbs, 13.48gs of fat
You can switch the flaxseed with Peanut Butter and get
713 calories, 45g protein, 84g carbs, 25g fats which is one of my favorites.
I put this in my Vitamix(which is a must for those of us on liquid diets due to how finely it will blend the ingredients) and go to town. I also usually put 1.5 cups of organic baby spinach in the above shakes to get my greens.
Enjoy [/quote]One scoop is how much weight, seems about 2 ounce computing at rate of 23g/oz ? Also is this whey protein concentrate at 80%? There really is nothing that is 100% pure protein powder AFAIK. Isolate gets the highest concentration topping out at 90% protein content.
I need to order the VitaMix to keep up with you dogs, you are grinding some tuff stuff into fine powder to put this down the gullet.
How much water is going in so the total volume is about ? ozs?
Lastly, does not seem like there is much sweetness coming through, does it have a nice balanced taste?
thanks don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Don, The protein powder I used as an example was a generic you can get at Costco made by Cytosport, makers of Muscle Milk. Don't over think some of this as generally speaking you're going to get between 20-30g protein per 2oz serving of most whey powders. Add water (I will also use Coconut water due to the electrolytes) to desired consistency. I like my shakes on the thicker side so I use about 8-10oz of water. If you are shooting this down a tube thin it out with more. I use Protein 17, which is USDA certified organic and has 30g protein per serving and will give a slightly different calorie read then above and tastes considerably different then the Cytosport as it's not sweet to me. Which is fine because with the Vitamix you will taste more of the blueberries due to how fine it mixes everything. As far as blenders go, I've used them all really. The Ninja products, The magic Bullet, and a myriad of cheaper blenders which all of broken and burned out due heavy usage. My Vitamix does everything better and I "love" it. I've never thought I'd be the type of guy that would fall in "love" with an appliance, but I have. It's an affair my wife agrees with so I'm good there  Seriously, I didn't know I what I was missing until last year when Brian and I flew to DC and I stayed with Charm and Bev. Charm had the Vitamix and I fell in love with it then and had to get my own. Dude it's awesome.
Last edited by EricS; 05-15-2013 05:20 AM. Reason: added more thoughts
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 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | HUMBLE? Don't get soft on my Eric!  Maybe offline I would love to hear more details about the nerve graft and where it was done. My contention is that nerves traveling through neck get so much scar tissue in the myelin that it can no longer feed muscles. Then carbon or uric acid buildup blocks veins much like cholesterol plaque in arteries. The combination is what causes muscles to atrophy and as accessory muscles take over for larger muscles they just burn out from being overworked constantly. The neurologists believe the signal decline in muscles is caused by damage to the anterior horn or brain stem and is strictly a motor neuron deficit. I think it mimics that by presenting as motor function decline and the problem is farther downstream and related to nerve damage. What's the timeframe for the nerve to connect? This is something I think is very significant for us and breast cancer survivors that get radiation to the neck. The only other possibility is IGF-1 R3. It has some interesting results. IGF-1 R1 is the deer angler spray. R1 has a half life in minutes so it immediately flushes out through urine. R3 is only allowed in labs because they believe that while it regenerates nerves and motor neurons, the pain as the nerves grow inch by inch may be inhumane. The mechanism involves triggering the liver to produce more natural HGH. Thanks again for all the nutrition and muscle discussion. If I can build some muscle in my face and neck life would be grand. Actually life will not even be a possibility if I can't keep the atrophy in check. It is a full-time job for sure! I have a group of docs that believe I am the only patient they have seen that stopped cachexia as advanced as mine. Also, research the reishi from an ALS/motor neuron/nerve perspective. Big caution, though, as reishi significantly thins blood and lowers blood pressure. I went 30 days without and saw major atrophy in areas that were building. Started back this week sparingly and see difference just this week. I have tried dried black and red. The red have less side effects for me but better results. I am going to make some tea and use it in shakes. Ed
Last edited by Uptown; 05-15-2013 06:13 AM. Reason: Misspellings...iPad did it!
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) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Eric,
Where do you get protein 17? I was shocked at the msg in some whey proteins.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Ed,
I'm sorry I need to update my diet tracker on my phone as I just checked my label. I'm using Source Organic Whey now as I can get it through Amazon through the OCF link. 2lb bulk bag for $65.
Also remember bro that it could be nerve degeneration caused by the effects of radiation over time. Brian has some facial paralysis due to this himself. I'm interested in your thoughts though so we'll have to chat it up, love that stuff. I'll PM you my contact info
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 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Definitely is nerve denervation. My neuro said if he hadn't studied radiation damage it would have been diagnosed as ALS. Much of the symptom mgt I gleaned from ALS studies.
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: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Thanks for the info. I'm not a big fan of most type supplements now, unless my doctor prescribes, after using all types of protein powders, supplements, diets, being a bodybuilder and working out excessively since I was 15. I'm 52 now, having originally gone from 130 to 275, but then often dropped in a flash, gained at will, like 20lbs in a week, 40 a month, and even 100 pounds in a year, which is a hazard itself. I just think most overdo it with supplementation, don't need it, waste thier $$, just get fat, and put added stress on their bodies, doing more harm than good. Once I was taking so much protein, my sweat smelled of ammonia, plus other problems they can cause. I think supplementation had an effect on my getting diabetes, maybe liver, kidneys problems too. Maybe one day, I'll start again, but right now satisfied to have been there and done that, but would not do it again to the same extent.
Talking about this gets me pumped up too lol.
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) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | I hear ya Paul. With all the neurological issues from radiation I tend to steer away from all meds, supplements, etc. Trying to address everything through diet but the muscle atrophy is keeping me concerned. Hard to not think about it when you can't swallow or breathe well. Anything that will build muscle is game for me right now although I am feeling quite sleek in this new slimmed down Ed v2.0.
Ed
Last edited by Uptown; 05-15-2013 09:39 AM.
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: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | That is a major concern, Eric. In that case, I would also do what needs to be done. Thankfully, I got past the cachexia or wasting issue.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Paul I completely agree with the whole supplementation overkill thought. I don't use much myself but have explored and experimented with some of them. Now I I stick mostly with whey (as I don't eat solids), bcaa's after a workout, fish oil, and the rest comes from whole foods, mostly fresh fruit's, vegetables and nuts. I gained 40lbs of muscle over a summer with just good old fashioned exercise and nutrition, going from 140lbs to 180, which I've been able to maintain even on a liquid diet. As long as I don't wear myself down I feel good and keep a really active schedule...and I look great naked.  hahaha
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: Feb 2013 Posts: 78 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Feb 2013 Posts: 78 | I just picked up some whey powder, bcaa supplement, and other ingredients for some protein shakes. Thanks for the detailed information and sample recipe. I'd estimate I have around 30-40lbs of muscle to gain back so may as well get started on that.
Last edited by AndrewL; 05-15-2013 01:33 PM.
Andrew age 25
early 10/12 - enlarged lymph node area 01/13 SCC of L tonsil, L BOT, 2 L lymph nodes stage IVa, T2N2bM0, HPV+
2/13 2 doses cisplatin big bag, 2 doses weekly cisplatin + 35x IMRT 4/13 TX finished 7/13 PET/CT - NED!
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Lol. I'm on board with ya, Ed. I did buy fish oil two weeks ago after going back to the gym, but laying off until I revisit my dr's. What never knew before, and learned recently , even stronger than steroids, is insulin, which some are taking after a workout, with some nutrients. I don't even want it for my diabetes, never mind muscle building. I'm 190, probably lost 5 in the hospital, but happy to stay this weight...blood sugar, bp down.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Fish oil is great for you. The omega 3's in it will lower insulin resistance and it's rich in bioavailable vitaminD, which is a prohormone sterol and will increase your testosterone levels if taken properly.
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 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Fish oil vs flaxseed oil? Or rather DHA vs EPA? I have thought about insulin Paul. Where can I get some?  Ed
Last edited by Uptown; 05-15-2013 03:51 PM.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Ed,
ALA is found in Flaxseed and it's less potent than DHA or EPA which are the long chain Omega 3's. DHA is the most plentiful Omega 3 found in the brain and retina, it's believed to lower risk of prostate cancer and alzhiemers/dementia
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 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Is eating fish not getting enough EPA/DHA. What about the DHA added to some organic milk. Is it usable? I saw some studies that indicated ALA converts to EPA although not a 1:1.
I usually get high omega 3 eggs and Well Balance butter substitute. Sometimes they both have a distinct fishy taste.
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: Mar 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2013 Posts: 40 | Well, my protein powder issue got solved. My Dad tried it and it bothered his throat. So that takes care of that. Haha. He is pretty limited to Ensure right now. Unless something is 100% smooth with absolutely no lumps or bumps he can't have it. Maybe in a couple more weeks.
Brandi, daughter of: Jack, age 69, non-smoker, BOT primary, Stage 4, HPV+ 1/28/2013: Surgery. All cancerous masses removed. Dad is CANCER FREE!!! 2/26/2012: Beginning of TX. Weekly chemo: Carboplatin and Taxol. Daily RT (about 40 total) 4/25/2013: Will be last day of TX, both chemo and RT | | | | Joined: Apr 2012 Posts: 111 "OCF across the pond" Senior Member (100+ posts) | "OCF across the pond" Senior Member (100+ posts) Joined: Apr 2012 Posts: 111 | Thanks all for this thread. Really interesting stuff. I agree wholeheartedly with the importance of diet.
I am looking at freeze dried organic fruits to make up shakes when I'm away from home and can't use my juicer or magic bullet. I have just ordered some Acai 100% freeze dried organic berries. (Euterpe oleracea)which is suposedly very high in Omega oils. It's not arrive yet though. Has anyone else come acorss it? Sally
Last edited by saxicola; 05-16-2013 12:44 PM. Reason: Added more
Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol. 10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12. 12/07/11 RIG. RIG removed 05/05/12. 4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Unless you are diabetic, with high Blood sugars, taking Insulin is a dangerous practice. Hypoglycaemia is not to be messed with. It can kill you. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
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