More questions..

Noellesmom said:

PEG recommendation
Was strong from my husband's radiation oncologist and chemo oncologist. While Jim did not have to use his PEG (never lost his ability or desire to eat) we were ready and would have used it.

If you have the PEG, obviously you want to continue swallowing to keep your throat as ready as possible for oral nutrition. We were provided swallowing exercises by the home health care agency that supplied the canned nutrition (we donated what had been provided and not used, which was all but a couple of cans).

We considered the PEG a "safety net" we would have been more than happy to use. It gave me a great peace of mind going into the treatments knowing I could help Jim at least in that way.

Peg!
I could not have made it without a Peg! Plus my Oncologist was adamant that I had it put in a week before treatment. It was great for taking my meds & crushed up dissolved pill's that I could not swallow. Plus I had a hard time with vomiting after chemo & needed to pump the water down. I made sure to swallow sip's of water constantly that was my responsibility. I never lost a pound because I had it. I know my treatment plan is similar to what you are describing. Plus It was also a big no for the vitamins etc also. Made sense to me. I was blasted with rads & could not have swallowed anything for a fair bit. He knew that. Plus food smelled & tasted bad for a bit. My Dr was more concerned with me not getting enough nourishment or dehydrate. When I had enough I stopped using the tube & had to prove to him that I would not loose weight for six weeks. I had gained 30 lbs during treatment & had to loose weight lol. I think that is very rare in itself. I am greatfull that I had it! It truly helped me & my hubby. One less thing to worry about.

Glenna M said:

PEG
Your treatment plan sounds identical to the one I received, cisplatin and 35 sessions of radiation. My oncologist told me I was getting the PEG tube, no discussion allowed. I'm a small person and he knew how rough the treatment would be on me and he didn't want to take a chance of my losing too much weight.

I received the cisplatin through an IV and only had a problem once when they had a hard time finding a vein. The chemo was two days per week in three week cycles and they would leave the IV needle in my arm wrapped with tape so they didn't have to try to find a good vein two days in a row. I'm assuming they did not recommend a mediport because I was only getting the cisplatin a total of 6 days in 3 months.

Before, during and after treatment I didn't take anything without checking with my doctors first. It's amazing the number of OTC supplements and medications that can have an adverse affect on the chemo. Please follow their recommendations, some may not make sense to you but they know what they are talking about.

Never apologize for asking questions, we all have and even after 18 months I am still asking questions. We are all here to advise and encourage others and we all learn from each other.

Stay well and stay strong,
Glenna

Jamie Ann
Hi Jamie Ann,

Welcome to "our club". Sorry you have to be here. And don't apologize for asking questions, that's what we're here for.

Your treatment is identical to mine. None of my doctors recommended getting the PEG at the onset either. They all said I may need it but to wait and see. So I did not get the PEG prior to treatments, but halfway thru I definitely needed it. So at week 4 of 7 I had the PEG put in. I had lost 60# at that time (went from 210 to 150). The PEG helped me stabilize the weight and got me the nutrition I needed. I've heard others say it was hard in the middle of treatments to get the PEG. I really didn't have any issues with getting it put in at that time, but as the old saying goes here "Everyone is different". However I would not have survived without it. It saved my rear-end for sure, so in my opinion it's a good idea to go ahead and get it before anything starts.

As for the supplements, all 3 of my docs said to stop any I was doing and I did. At that point I was pretty much doing whhatever they said, even though I might have questioned them on occasion, I trusted them and therefore I stopped vitamin supplements. I did use some other supplements such as melatonin during treatment but I always checked with all 3 of my docs before I started any.

I may be wrong but I believe most who get the port are ones that have weekly chemo treatments versus those that had the 3 treatments of Cisplatin like you and I. FYI, I only received 2 of the 3 Cisplatin doses due to hearing damage. Doesn't happen to everyone, but something to be aware of. Might help to get a baseline hearing test prior to first chemo.

Good luck, sending positive thoughts your way!

Greg

KristynRuth86 said:

Hello!
Hello! I'm sorry to see you have joined this ever growing group, but am happy you are asking questions! My Dr also didn't reccomend a PEG unless it was very necessary which at about week 6 they were wanting to put one in, but I said NO WAY because since I only had about 1 week left of treatment (then about 3 weeks of side effects after treatment) I didn't want to go through that. I trudged w/o the PEG. Which I do not reccomend, but since my drs waited til the end to decide to get me one I said no. I also only was scheduled for 3 chemo treatments (though I only ended up doing 2) they also didn't feel the need for the mediport. I'm glad about that, using the IV was no biggie since I only did it twice.
Like Greg said, please be aware of the hearing damage that can happen. I didn't necessarily receive hearing "damage" but I feel like I just can't hear sometimes, and I also get that pesky ringing in my ears quite often.
My Dr also advised against any kind of vitamins while I had cisplatin in my system.
Good luck with everything and just remember we are all different.
Take Care!

Multivitamin
Then DO NOT use, as your Dr. told you. Know I have been advised, post-treatment to use them, one/day, but do not remember using them during treatment.

As for the Drs. opinion about the PEG and dependence, and losing the swallowing function: it is not complete baloney, but not a good reason for not installing. The swallowing function is important to continue, but is easy to do so with water, or even ice, as I did. In the worst of times, for me, I was only swallowing melting ice, but that time was short. All other times during treatment I was chopping-up pills and swallowing with water, or just sipping water. Hydration is important- and something to remember all thru treatment, and that covers the swallowing function.

Your Dr., especially Rad, should be part of the PEG decision, as where the rads are applied is a key to it all. If the Drs. advise against a PEG because they don't think the ability to eat/drink will be impacted very much- that's one thing. But if it's because of the reasons you stated about dependence and swallowing- I'm not buying that, and I doubt any others, here, who have had a PEG do either.

Also, you may want to note Greg's experience of getting the PEG during treatment. Had mine put in before, along with a Port, and took it all in stride. During treatment, when one has become weakened, the immune system has become greatly compromised, and just making it thru the day is a bit of a chore- not the best of times to get the PEG, obviously. To me, this is a part of Drs. being in error/not handling a C treatment case as well as they could have.

kcass

MarineE5 said:

Too Peg or not to Peg
Jamie,

I am glad that you took control and insisted on getting the Peg Tube. As KristynRuth mentioned, she didn't want it after being told no and at a later date be told she could get it. Your throat is going to be uncomfortable in the middle of treatments. You don't need someone running scopes and other instruments down your throat then. I and many here will say you did the right thing.

I had no choice as part of my tongue was removed, radical neck disection, trache and then the PEG tube. After the surgery, my surgeon had me sip water after he finally removed the Trache and I was able to do it. He then told me to start off eating soft foods in small bites. When I moved into treatments, I slowly had to rely on the PEG Tube and balanced it with some soft foods like yogurt. Mainly to keep the swallow motion.

My Best to You and Everyone Here

our PEG experience
Hi,
My husband's radOnc was very against the PEG for the same reasons your Onc mentioned. The medOnc highly recommended it. My husband really wanted to only listen to the radOnc but I convinced him to get it before things got too bad. He absolutely hated the PEG but honestly, I believe was good he got it. I was able to make my husband wonderful shakes with veges, fruit and protein powder, and he could put his vitamins in too - that he wouldn't have been able to eat/drink by mouth. He did eat all throughout his treatment, but I think having the PEG helped him recover quicker since we could put so many good things in the PEG that would have hurt too much taking by mouth.

Regarding the supplements - I too had asked about several supplements for Joe to take and both onc's nixed them. I really wished he could have taken them, but oh well..

Hope this helps.
Suzanne

To PEG or Not to PEG...
I had the nine weeks of Chemo (three week cycles), then seven weeks of concurrent weekly chemo with daily rads.

The PEG was mentioned, but only to make me aware of options. With me being on the well nourished side, they apparently didn't think I was in danger of wasting away, LOL...

They didn't insist, nor did I...it was never an issue with me..I'm an eater, one way or another.

I did lose weight, especially during the last few weeks of rads and the next few. But never in any danger of losing too much or being too weak.

I did have the power port, and actually still do (it's time to come out, I just haven't done it yet)..

Same words concerning added vitamins or supplements. If you do Ensure Plus, they have a lot in that already also.

Best,
John

Jamie
Good for you on asking great questions. I think it's very wise to get the Peg. If you don't need it, that's fine. If you do, it will be there for you. Mine was recommended from the beginning cause I'm tiny and thin.

I was also told not to take vitamins during rads, so I didn't. Between neck dissection and rads, I juiced every day and took a liquid multivitamin and a liquid immune booster. I wanted to try and boost my immune system going into treatment. I had the liquid vitamin and then started it back up a couple months after rads.

I did not have chemo, so I did not get a port. Others here have had them.

Also, there are some studies that say that hpv+ cancers respond better to treatments. Not sure if you read about that or not.

Hi Jamie
Yes I did not use a PET on either of my radiation treatments and it was a living hell for me to keep any weight on or to try and eat anything, like you my doc did not think I needed it, He was wrong about that.

I also took all my Chemo through my right arm; it was not a big problem. The doc is right on the Vitamins and any other herbal type treatment as they can affect the chemo treatment, so just get off of them until the treatment is over.

Other then that you sound very normal to me in what your doc is going to do, just keep positive and keep posting. One thing we love it to give support and help to any of our family going through treatment.

All the best, and welcome to the Family here on CSN
Hondo

Jamie_Ann said:

update
Thank you for all the thoughts. And sorry for disappearing there for a while- It's been a crazy rollercoaster of scans, blood draws, and doctors appts. In the matter of a week, I've had 12 blood draws, kidneys tested, PET, MRI, hearing test, swallow study, follow ups with both oncology and radiation in preparation of treatment, nutrition consult, 6 teeth pulled, and will be getting both the PEG and mediport placed on Monday. Whew...

The word now is that chemo/rads will start 5/2. The radiation oncologist advised that she did not want me working through treatment, that all of my focus and energy needs to be on kicking some cancer butt. So STD forms were submitted and I'm officially off work until I finish treatment so hopefully I'll be able to keep up on all the new threads! The STD form said they expect me to be off for 6-12 months...I'm hoping they are just being overly cautious. I finally got around to adding some info to my profile and uploaded a picture. This was one of the last pictures taken of my dad, my kids and I before he lost his battle with cancer. It helps to remind me of why I am and will continue to fight every day!

Reading through everyone's questions and comments has helped me tremendously in the past few weeks and I'm sure will be invaluable to me during treatment - thank you to everyone who gives their time and experience on here, it's been a life-saver!

Peg
I was reluctant to get a peg and although it has not been my favorite thing it has been a great help with maintaining my weight which in turn is making rad treatment less detrimental to my overall health.