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Starting up again

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

After meeting with the radiation oncologist yesterday it looks like I'm starting radiation and chemo the 11th of next month. I had just finished up 3 rounds of Cisplatin and Gemzar and had a clean PET scan at the end of August so I was hopeful that I might be done. But the protocol calls for the 35 rad and Cisplatin regimen now even though the scan was clean. I really felt like I did well through chemo; exercising every day, eating all organic, taking my supplements. I even gained 17 pounds. My side effects were fairly minimal except for some major blood clotting, mild nausea and of course heavy fatigue. The doc told me I won't go through the next round as smoothly so I'm prepping myself and my family for the worst but honestly believing that it won't be as bad as he says. I'm supposed to get the PEG in but my platelets are still too low so I'm really just waiting as always. The doc is setting me up with some Biotene but I've read about many other things that help with the radiation side effects on these boards. Any suggestions anyone has would be helpful as I can start getting those things together now while I have the time. I'm also interested in using a vegan/organic supplement for the PEG instead of the weird chemical concoction the nurse showed me yesterday. Does anyone know of a product like that or a way to make my own? It's nice to know you're all here while going through this. I have yet to find a better resource/support system. I'm a bit freaked about the radiation and the PEG but trying not to show my friends and family as they're already freaked. Somebody's got to be consistently calm and cool. Right? My best to all of you. I read about your lives and lift you up in prayer often.

Bob

Bob

friend of Bill
Posts: 87
Joined: Mar 2010

...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

timreichhart
Posts: 195
Joined: Aug 2010

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.

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

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.
Bob

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

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

timreichhart
Posts: 195
Joined: Aug 2010

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.

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

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

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

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

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

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

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

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.
Bob

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

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

Mike

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

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

timreichhart
Posts: 195
Joined: Aug 2010

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.

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

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

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

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.

Bob

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

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

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

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.

Bob

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

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.

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

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.

Bob

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