Starting up again
Bob
Bob
Comments
-
Freaking and waiting...
...are about par for this course! I calmed down after the chemo and rads started and I began to understand what the treatment deal was going to be like. Try to take a step at a time and find a safe place in your head to go when your friends are going out of theirs.
Vince0 -
I hope I dont have to do rads and chemo againfriend of Bill said:Freaking and waiting...
...are about par for this course! I calmed down after the chemo and rads started and I began to understand what the treatment deal was going to be like. Try to take a step at a time and find a safe place in your head to go when your friends are going out of theirs.
Vince
Bob what kind of cancer did you have? because I had chemo first with 3 rounds with 5FU and about 6 rounds of Cisplatin then I had radiation for 7 weeks for 5 days straight. Now you got me freaked out about this who chemo/radiation again after PET scan is clean.0 -
NPCtimreichhart said:I hope I dont have to do rads and chemo again
Bob what kind of cancer did you have? because I had chemo first with 3 rounds with 5FU and about 6 rounds of Cisplatin then I had radiation for 7 weeks for 5 days straight. Now you got me freaked out about this who chemo/radiation again after PET scan is clean.
Tim, I was diagnosed with nasopharyngeal cancer on May 20 of this year. I've only completed 3 rounds of Cisplatin first because there were spots revealed on first PET on bone that they wanted to go after first. Standard treatment for NPC and it seems other head and neck cancers is concurrent rads and chemo for the 7 weeks. My doc deviated because of the possible metastases the PET showed. Now they're ready to do the standard treatment but I'm not so ready because the scan was clean. Docs argument is to be super aggressive and prevent recurrence. I get it. My argument is that clean is gone and I'm ready to be done. I sure wouldn't feel this way if the scan wasn't clean. What has your experience been with clean scans? What kind of cancer do you have? You've done alot more treatment than I have so I'm sure you don't have more with a clean scan.
Bob0 -
Same locationtimreichhart said:I hope I dont have to do rads and chemo again
Bob what kind of cancer did you have? because I had chemo first with 3 rounds with 5FU and about 6 rounds of Cisplatin then I had radiation for 7 weeks for 5 days straight. Now you got me freaked out about this who chemo/radiation again after PET scan is clean.
Tim
FYI, after you have had radiation in one location to will not do any more in that same location. You can only have so much in one area. From what I know is that the only options after your first battle is to have more chemo and surgery. I found this out when they thought my cancer came back but turned out to be necrosis and infection.
john0 -
to bobfisrpotpe said:Same location
Tim
FYI, after you have had radiation in one location to will not do any more in that same location. You can only have so much in one area. From what I know is that the only options after your first battle is to have more chemo and surgery. I found this out when they thought my cancer came back but turned out to be necrosis and infection.
john
Bob I have the same cancer as you and I will find out next week about my PET scan see if it comes back clean but I know there is going to be hot spots due to radiation/scar tissue I am only 6-7 weeks of all treatments are done. I had biopsy surgery done on my right side of the neck because the cancer as only spread to right side of lymph node and as not spread to any other parts of the body since the doctors said we caught in time.0 -
Vegan/Organictimreichhart said:to bob
Bob I have the same cancer as you and I will find out next week about my PET scan see if it comes back clean but I know there is going to be hot spots due to radiation/scar tissue I am only 6-7 weeks of all treatments are done. I had biopsy surgery done on my right side of the neck because the cancer as only spread to right side of lymph node and as not spread to any other parts of the body since the doctors said we caught in time.
Bob,
Good luck to you going thru this next round. I am trying to go vegetarian as much as I can. I still have PEG but it is coming out shortly. I used Spiru-Tein. It is a high protein energy meal product. I get it in powder form and mix it with either rice, almond, hemp or soy milk and add a "green" mix with it. I found a few other vegan (soy based usually) that appeared to be healthy but the Spiru-Tein was stocked in several local health stores. I tried several "green" mixes to add to it also. I think I used one from Nature's Path the most. I also added my vitamins and pro-biotics to the mix and on occassion would throw some whey in to get additional protein. I've been trying to eat as much as possible but if you've seen some of my other posts I've been needing to get in a lot of calories to gain weight (3500/day). I haven't used the PEG for 2 weeks now so as soon as I can schedule it, it's getting yanked. The Spiru-Tein tastes ok, but the "green" mixes are horrible. Usually these went in via the PEG. I'm hoping to get my real greens via mouth from here on out.
Good luck!
Greg0 -
Timetimreichhart said:to bob
Bob I have the same cancer as you and I will find out next week about my PET scan see if it comes back clean but I know there is going to be hot spots due to radiation/scar tissue I am only 6-7 weeks of all treatments are done. I had biopsy surgery done on my right side of the neck because the cancer as only spread to right side of lymph node and as not spread to any other parts of the body since the doctors said we caught in time.
Tim, glad they caught yours early. It took them 9 months to figure mine out after many allergy meds and antibiotics. How have you handled the treatments so far? I'm looking forward to hearing how your scan goes.
Bob0 -
PEGGreg53 said:Vegan/Organic
Bob,
Good luck to you going thru this next round. I am trying to go vegetarian as much as I can. I still have PEG but it is coming out shortly. I used Spiru-Tein. It is a high protein energy meal product. I get it in powder form and mix it with either rice, almond, hemp or soy milk and add a "green" mix with it. I found a few other vegan (soy based usually) that appeared to be healthy but the Spiru-Tein was stocked in several local health stores. I tried several "green" mixes to add to it also. I think I used one from Nature's Path the most. I also added my vitamins and pro-biotics to the mix and on occassion would throw some whey in to get additional protein. I've been trying to eat as much as possible but if you've seen some of my other posts I've been needing to get in a lot of calories to gain weight (3500/day). I haven't used the PEG for 2 weeks now so as soon as I can schedule it, it's getting yanked. The Spiru-Tein tastes ok, but the "green" mixes are horrible. Usually these went in via the PEG. I'm hoping to get my real greens via mouth from here on out.
Good luck!
Greg
HI Greg. Thanks for the info. It sounds like you can throw alot of stuff in the PEG. I was under the impression it could only accomodate a sediment free liquid. Good to hear that the vitamins and probiotics can go in. How far into your treatment did you start needing the PEG? Was it a swallowing issue? Does anybody get through all the rads and still eat normally? The doc told me it wasn't optional. Glad to hear you're getting your PEG out soon. I bet that will be a nice subtraction from your life.
Bob0 -
Bob
Likely the combo of rads and chemo are while the next round will be a bit tougher- but you'll make it thru okay. Magic Mouthwash is the stuff to help w/the mouth condition, along with possible "stuff" to avoid Thrush.
I used the highest-concentration of Jevity, which required only 4 feedings/day. Might not be the easiest to tolerate in the degestive tract, but it was okay for me. Must get your Nutrition, though, and I hope you'll consider your PEG a good thing to have, as it will eliminate the common problem of struggling to get the needed Nutrition into you.
Keep us informed.
kcass0 -
PEGadventurebob said:PEG
HI Greg. Thanks for the info. It sounds like you can throw alot of stuff in the PEG. I was under the impression it could only accomodate a sediment free liquid. Good to hear that the vitamins and probiotics can go in. How far into your treatment did you start needing the PEG? Was it a swallowing issue? Does anybody get through all the rads and still eat normally? The doc told me it wasn't optional. Glad to hear you're getting your PEG out soon. I bet that will be a nice subtraction from your life.
Bob
Hey Bob,
I've heard a lot about limiting what you can put in the PEG. Maybe I've been lucky. I've had mine for 6 months now and anything I can get out of a food processor I would put in the PEG. Several used the gravity method with the tube. I am too impatient and would always use the syringe to pump my food in and the syringe made it easy to clear the tube also.
I'm SCC right tonsil with mets to nodes on both sides of neck. I had 7 weeks rad with concurrent chemo. Chemo was at weeks 1, 4 and 7 of Cisplatin (only made it thru 2 treatments of Cisplatin due to hearing loss, then switched to Erbitux). My tongue and throat had lots of lesions and sores due to rads. I had the PEG put in at week 5. Starting at that time I could not eat for the next 6 weeks due to the sores. I used the baking soda mix along with Caphosol and L-Glutamine. I was very proactive in trying to get back to eating as soon as I could, but for me it was not do-able (pain with tongue/mouth and difficulties swallowing). Not trying to discourage you, just saying everyone is different. There are several on the site who had very little difficulties eating. That was just one of the bad side effects to hit me. My mouth sores did not go away until 3 months post treatment. I'm 6 months post treatment and doing real well.
Anything else I can help with let me know.
Positive thoughts!
Greg0 -
bobadventurebob said:Time
Tim, glad they caught yours early. It took them 9 months to figure mine out after many allergy meds and antibiotics. How have you handled the treatments so far? I'm looking forward to hearing how your scan goes.
Bob
I handled all the treatments just fine but I am dealing with little/no saliva right now after having radiation and I hope to get my saliva back. I just starting eating again like soft foods and having protein shakes. But I will let everybody know about how my PET scan comes out. Also you dont want to know how I found my own cancer.0 -
Alternative feeds
Hi Bob,
Sorry to hear they want to go this extra mile. It is an awful thing not knowing whether you should or shouldn't as you know there are valid arguments from both sides.
As for the alternative to the Hospital muck, most of which is full of Casein (Dairy/milk protein) there are some choices. If you have read the first couple of Chapters of 'The China Study', they found Casein promotes and progressed cancer in 100% of their trials, and they did plenty and every time 100% positive connection. Funny that Nestle load up cancer wards with 'free samples' of their stuff. Anyway call me a skeptic but I wear the badge proudly.
i found a product called Vitashake by Sunrider. It is MLM but an excellent product. I think in the US it is about $2.18 a satchel. Comes in boxes of 10 and is in a powder form. I, like Greg, only used, organic Rice milk, Hazelnut milk, Oat milk, Hemp Milk and occasionally Soy milk (I rotate). I mixed 1 Satchel with 200ml of the milks gives you 400cals, so you need 4 to 5 a day to maintain weight under normal conditions (2000 cals normally). The Vitashake is 100% plant based and is formulated to give you all the right stuff, so vegan friendly.
Greg's suggestion looks excellent. I recall Mick tissue also has a good one (Mick ? Miiii iiick ?) You can maybe get a few different feed solutions and rotate. You will find you can only get smaller amounts in each time so 'small and frequent' is the trick. You may have to vary the liquid content in case the feed gets too thick and won't flow. You will get the hang very quickly so absolutely don't stress about the PEG Bob. It will be your friendly little 'alien' for a period'
You can add further supplements like Vital Greens, Glutamine powder etc as long as it is dissolved in the mix. The gang is always here to help you through.
Scam0 -
Gearing Up
Bob,
I've read that you can put different types of solutions through your PEG tube, depending on the French (tube diameter). Some folks liquify lots of different things (I did not try, but read of someone who pureed even meat and veggies together). My family and I were completely creeped out by the idea of the PEG - once I got used to it, it was just a thing.
And - I wouldn't disagree with your doc for the world - he knows much more than I ever will about cancer treatments. I will say, though that my hardest days during treatment were Induction Chemo days, not chemo radiation days.
Do well.0 -
Thanks GregGreg53 said:PEG
Hey Bob,
I've heard a lot about limiting what you can put in the PEG. Maybe I've been lucky. I've had mine for 6 months now and anything I can get out of a food processor I would put in the PEG. Several used the gravity method with the tube. I am too impatient and would always use the syringe to pump my food in and the syringe made it easy to clear the tube also.
I'm SCC right tonsil with mets to nodes on both sides of neck. I had 7 weeks rad with concurrent chemo. Chemo was at weeks 1, 4 and 7 of Cisplatin (only made it thru 2 treatments of Cisplatin due to hearing loss, then switched to Erbitux). My tongue and throat had lots of lesions and sores due to rads. I had the PEG put in at week 5. Starting at that time I could not eat for the next 6 weeks due to the sores. I used the baking soda mix along with Caphosol and L-Glutamine. I was very proactive in trying to get back to eating as soon as I could, but for me it was not do-able (pain with tongue/mouth and difficulties swallowing). Not trying to discourage you, just saying everyone is different. There are several on the site who had very little difficulties eating. That was just one of the bad side effects to hit me. My mouth sores did not go away until 3 months post treatment. I'm 6 months post treatment and doing real well.
Anything else I can help with let me know.
Positive thoughts!
Greg
Appreciate your help. I take L-Glutamine now as a supplement. Will I be swishing with it as a rinse? My ears have been ringing non-stop from the Cisplatin but no real hearing loss. Is that how yours started? Glad to hear you're 6 months out and doing so good.
Bob0 -
PEGKent Cass said:Bob
Likely the combo of rads and chemo are while the next round will be a bit tougher- but you'll make it thru okay. Magic Mouthwash is the stuff to help w/the mouth condition, along with possible "stuff" to avoid Thrush.
I used the highest-concentration of Jevity, which required only 4 feedings/day. Might not be the easiest to tolerate in the degestive tract, but it was okay for me. Must get your Nutrition, though, and I hope you'll consider your PEG a good thing to have, as it will eliminate the common problem of struggling to get the needed Nutrition into you.
Keep us informed.
kcass
Thanks Kent. It seems like the "magic mouthwash" is an individual mix and not a specific brand name. Is that true? Can I make my own? You're right about considering the PEG a good thing. Difficult now as fear of the unknown is clouding my judgement but I'm sure it will be a blessing as the chemo has been and in its own dark way even the cancer.
Bob0 -
VitashakeScambuster said:Alternative feeds
Hi Bob,
Sorry to hear they want to go this extra mile. It is an awful thing not knowing whether you should or shouldn't as you know there are valid arguments from both sides.
As for the alternative to the Hospital muck, most of which is full of Casein (Dairy/milk protein) there are some choices. If you have read the first couple of Chapters of 'The China Study', they found Casein promotes and progressed cancer in 100% of their trials, and they did plenty and every time 100% positive connection. Funny that Nestle load up cancer wards with 'free samples' of their stuff. Anyway call me a skeptic but I wear the badge proudly.
i found a product called Vitashake by Sunrider. It is MLM but an excellent product. I think in the US it is about $2.18 a satchel. Comes in boxes of 10 and is in a powder form. I, like Greg, only used, organic Rice milk, Hazelnut milk, Oat milk, Hemp Milk and occasionally Soy milk (I rotate). I mixed 1 Satchel with 200ml of the milks gives you 400cals, so you need 4 to 5 a day to maintain weight under normal conditions (2000 cals normally). The Vitashake is 100% plant based and is formulated to give you all the right stuff, so vegan friendly.
Greg's suggestion looks excellent. I recall Mick tissue also has a good one (Mick ? Miiii iiick ?) You can maybe get a few different feed solutions and rotate. You will find you can only get smaller amounts in each time so 'small and frequent' is the trick. You may have to vary the liquid content in case the feed gets too thick and won't flow. You will get the hang very quickly so absolutely don't stress about the PEG Bob. It will be your friendly little 'alien' for a period'
You can add further supplements like Vital Greens, Glutamine powder etc as long as it is dissolved in the mix. The gang is always here to help you through.
Scam
Thanks Scam. I checked out the website. Looks good. So much better than the stuff the nurse recommended. I have read The China Study. Great book! Also "Beating Cancer with Nutrition", "Anti-Cancer", "Foods That Fight Cancer" and some good old Robert B. Parker books that have absolutely nothing to do with cancer for a break now and then. I greatly appreciate all your posts as we share similar beliefs regarding nutrition and healing.
Bob0 -
Diameter?Pam M said:Gearing Up
Bob,
I've read that you can put different types of solutions through your PEG tube, depending on the French (tube diameter). Some folks liquify lots of different things (I did not try, but read of someone who pureed even meat and veggies together). My family and I were completely creeped out by the idea of the PEG - once I got used to it, it was just a thing.
And - I wouldn't disagree with your doc for the world - he knows much more than I ever will about cancer treatments. I will say, though that my hardest days during treatment were Induction Chemo days, not chemo radiation days.
Do well.
Hi Pam. Do people get different diameter tubes? Is it optional? I get the creeped out thing. I'm a little worried about my girlfriends reaction though she's seen worse so far. It is hard to disagree with the doc as he's done good so far and is very knowledgeable. He is completely closed to anything alternative though and I feel like the treatments and healing I'm doing outside of the hospital is equally valuable and powerful. Interesting that your experience with the chemo induction was harder than the chemo/rad. I am wishing for that for myself as I found the chemo to be much easier than I expected. Thanks for your help.
Bob0 -
PEG TUBEadventurebob said:PEG
HI Greg. Thanks for the info. It sounds like you can throw alot of stuff in the PEG. I was under the impression it could only accomodate a sediment free liquid. Good to hear that the vitamins and probiotics can go in. How far into your treatment did you start needing the PEG? Was it a swallowing issue? Does anybody get through all the rads and still eat normally? The doc told me it wasn't optional. Glad to hear you're getting your PEG out soon. I bet that will be a nice subtraction from your life.
Bob
Hi Bob, after today I have 14 radiation treatments down and after next Monday I will have 2 of my 3 Cisplatin Treatments down. I see now that I really underestimated how tough this was going to be. One week out of surgery (Aug. 7th) I started going to the office 2-3 times a week for a few hours and quickly was eating just about anything I wanted 3 weeks after surgery. Today, I have not left the house except to go to Radiation for the last 7-10 days. My Surgeon did not think I would need a PEG especially with the way I recovered and I was a strong muscular 240 LBS before surgery. Today I think a PEG is imminent as I can only take in 700 - 1200 calories by mouth in the form of shakes and or Boost type products as the pain from the mouth sores is unbearble, even with a 150 MIC Fentanyl patch and liquid Oxycodon as I need it. I have a constant low grade fever and sweat constantly 24-7.I am totally miserable and only try to get through the day at hand.
Not everyone will have this type of issue, some do and some do not.
If I knew then what I know now, I would have gotten the PEG put in, but I thought I was too strong to need anything like that. What a fool I am!!
Stay strong
Mike0
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