Has anyone heard anything about daily swimming while undergoing treatments?

I want to keep up my routine of swimming for as long as possible and didn't know if there was a problem doing it while getting radiation/chemo.

I'll ask the Doc's, but thought someone here might know too.

It has really helped with the neck stiffness and mobility, although not completely resolved.

I still have swelling on the Left side, and it feels like it's getting hard..? Is that normal?

I think I remember reading about that before, but when it starts to happen to you, it seems more severe

You actually got me to post. Michael, I'm no expert here, but there might be several issues. If you are talking in the Ocean, salt and sun are possible issues. If in a pool, sun and chlorine may irritate the area. You should have been cautioned about sun exposure at your radiation consult, but who knows. You are going into a fairly rigorous treatment plan and you may not be up for the daily swim anyway.

Other posts;

On the therabite, call them. They will know which insurance will cover it or, if yours does not, they will try to get it covered as they did with mine. It works well if you use it, but that is always the hard part. Using it! They ran about $450.00 when I got mine. I did not read the entire post, if this was covered forgive me.

As a note on the old timers. The board has changed, not necessarily for the bad, but changed. Quite honestly is has shifted from an informational source to a support group with many off topic postings. This is not bad, support is important, just different. Me, I tend to be more direct in my posts and have gotten into trouble more than once on here. I can see that my style would not be as well tolerated in the boards present climate and I choose to post, with this exception, as a PM or an email. I will say this, you will never be left unanswered by an "old timer". The information will get to you in one form or another, just not always on the public board. This is a great place and it will continue to be the best Oral Cancer resource on the Internet.

Glenn

Hi Michael,

Aside from the issues Gary mentioned re swimming, there is one much larger one if you have a PEG tube--that is that if you get yourself underwater to the extent the PEG hole is underwater, that water ends up filling up your stomach (and I doubt you want either ocean water or cholrinated pool water in your stomach when you're undergoing chemo, which is likely to make you nauseated as it is).

I am having restricted movement in my jaw lately and the therabite discussion came at a good time since I was just doing finger-in-mouth jaw stretching exercises and they haven't been working too well. I see my RO next week so maybe he can prescribe one. Thanks, guys.

Nelie

Oh wow!

I did't realize the PEG prevented me from swimming!!

I know I might not feel like it after a week or two, but was counting on it for exercise and relaxation...Bummer.

I'm glad I found this out before we signed the lease on the more expensive apartment just because it had an indoor pool...

Thanks for the great advice both of you!

PS: Glenn...Speaking for myself, I think that all views are welcome and appreciated here.

That's one of the beautiful things about an open forum like this...

Any blunt or cold advice will quickly be countered by someone else's warm and fuzzies....

It's very nice to get a well rounded perspective on these issues, and I think information is empowerment, which, like it or not, translates into "support"... :-)

So, again, speaking for myself, please post any ideas, comments, feedback or information you feel is appropriate...

- Michael

OK Michael, now youv'e done it you have brought up the dreaded "tube or not to tube" subject! (innocently I'm sure) You should know that there are quite a few here that did this without a PEG tube.

Another of many reason to try without the tube? As I recall you mentioned having a little extra size? Ask your doctor's if you could do this without the tube.

Just wait and see what reply messages this gets....Wheeee we havn't done this in a while. :p

To My friend Glenn: What style?

Well, I am about 50 to 70 pounds (depending on who you ask, in fact, I think my Mom would say 10), overweight, so I was arguing with the Doc against the tube...

I guess hydration would be a concern though, what do we non-tubers do about that? IV if it get's too bad?

Michael,
My husband was very resistant to the PEG, but what a relief it was to the both of us when he finally got one. Beyond nutrition, there is the hydration that you mentioned - and also the delivery of meds. My husband got to the point where he could not swallow pills and it was great to be able to grind them with a mortar and pestle and add them with some liquid to the PEG. He took his pain meds and also some herbal immune boosters (all approved by the radiation oncologist) this way.

But are you getting a PICT line for delivery of the chemo? If so, that is an even better way to get hydrated. My husband would start looking and feeling really bad and I would get a bag of fluids started via the IV line and the change would be quick and remarkable. But the PICT (think I have the name right, but not sure - I love how I am forgetting all this stuff as time goes blessedly by) should also not get soaked in water. When my husband took a shower, we wrapped plastic wrap (like Saran Wrap) around his PEG area and his PICT area. Maybe you can figure out a way to waterproof the PEG to continue swimming as long as possible. I'm with you on this...I get pretty grouchy if I don't have my laps.

Best,
Anita

Michael
Here we go! Get the peg...lol
Mark just loves to stir things up, and this is a doozie!
Better to have it and not need it than get weak and dehyrated because you cannot swallow.

Glenn,I have missed your "Old Grump" posts , diplomacy was never my strong suit and you made me look good!

Cheers All
Marica

Well they said if I lost more than 3 pounds a week I would get the tube. I have eaten on another 10 pounds as icecream has been on sale every week. I did not want the tube but I am sure there are those for whom it not be an option.
Than again maybe I am wrong so continue on with todays topic:

The Tube

This is exactly what I was talking about! Brian or Mark, please close this thread that has clearly gone off topic.

Thanks,
Glenn

Glenn - I understand your position. Remember that the reason we leave all the posts up here, ESPECIALLY those with hardcore information content, is so that future readers of the board will have it to read. (We are beginning to prune out the "wish you well" posts of the first year since they are taking up valuable server space and make the searches of the message board more cumbersome and slow. The current ones will definitely stay.) When people PM, which is their prerogative this valuable experience/information resource is lost. While respecting your desires, I wanted to say that your candid style is a valuable asset, and as you continue to go through your treatment process I would hate to lose your insights and posts here on the board. Let's take our ideas to a new thread. This one is closed.....

I'm lucky this is not fully closed yet. What newer posters do not understand is that the Tube threads have been my frequent downfall here and it was not my part of my reply. It may be be pertinant to Michaels post but I just can't be part of it. If this remains open, no big deal. Maybe I over reacted.

I apologize if my post seemed to be an attempt to cause trouble. If anything it was an attempt to jab (humor) at those healed PEG scars.

While we do sometimes wander off-thread I don't see it as a problem as much as it is similar to a face-to-face conversation between friends. Frequently conversations wander around and while that may result in informality, I don't find informality that bothersome. Over the years we have had some very humorous volleys but in the context of serious subjects. I believe in the value of humor. If I have taken liberties today and in the past, those liberties were likely intended with some kind of humor mixed in.

I don't think that this (idle) conversation should cause worry or be concerned that the Forum is not completing a mission. Forums are driven by the needs of the group. I believe there is a very broad representation of personalities here and that has very significant value. It means almost any new person can find someone already here to relate to.

A rich cross-section of people: helping people.

Mark
TO PEG OR NOT TO PEG THAT IS THE QUESTION?
do you do Shakespere in the USA?
Sunshine... love and hugs
Helen

Ditto Mark!
Marica

Michael back to the swimming I did read on a cancer info site today that the clorine in pools is not so good to be in.

I agree with Mark, the board will turn into what the posters make it.

On that note, I feel I must say this....MICHEAL GET THE PEG!!

Sorry Mark!

As a newcomer to OCF [March 05]I'm having several reactions to the above posts. 1st, I wish someone would enlighten me as to the objections to a peg. I know for sure that if my husband had not had a peg inserted during his surgery, he would most likely be gone today as a result of dehydration and malnutrition. We still struggle with those two issues daily. 2nd. The "idle conversation" I read during my first month here is what taught me how to look for the issues we would be dealing with during treatment, how to find the meaning of the terms and words associated with SCC[which we'd never seen before] and it gave me reassurance that this battle could be fought and won with love,grace,humor,support and prayer.3rd. I don't know where to look for and learn the "rules" about what the appropriate things are to say in a post.And I need the definition of "thread" Finally, I hope I can find the time to find all of Glen's posts.Sounds like interesting reading. Amy

Right now Jerry is in the hopital because he was not using the peg enough.We had hydration problems last week which resolved with IV fluids.This week he started running a 103.8 temp.If you get the peg use it like you are suppose to.Jerry was about 20 - 30 pounds over weight (I added 10 to him before he started tx after reading this forum)His sister just found out last night that he has the peg and she freaked out.

Hi Anita. I think this is the first we've met, thank you for the information and advice.

I don't plan on having a Port (PIK, Hickman, or the more common recently, Portocath.)

I asked the Oncologist about this, and he said he doesn't routinely put them in...(which adds weight to his PEG suggestion).

I am only getting (planned anyway) 3 infusions of Cisplatinum, so the Doc thinks they can just do it IV...which is also a good argument for the PEG since my veins may collapse half way through, and need to be hydrated.

So, I guess I'll have the PEG (G-Tube) on Monday, and hope for the best.

Glenn, my fealings don't get hurt easily, so there's no need for Brian to close this thread. I find the dialogue fascinating....and deeply appreciate the feedback.

Mark, I agree with your points, about the diversity of opinions, and the importance of "wandering" to give the fabric of these forums a real-life feel.

Marica, I think you are new to me too :-)

This PEG Tube thing sure brings people out of the woodwork If I'd known that I'd have done this weeks ago.

Sounds like Pete is doing great! I hope to chat with you more.

Barb, where did you read this about chlorine and cancer? really? I'd love to hear more about this. I've been soaking in the hot tub under the moon and stars almost every evening

Maybe it's the general infection, bacteria concern, especially for the immuno-suppressed due to treatments...

Amy, there are some "rules" when you first sign up to the forum.

[quote] Remember that this is hopefully a place for the positive exchange of ideas, not a place to verbally trash someone else. Although you may wish to vent your frustrations, and that certainly takes place in an environment as emotional as a cancer forum, please keep personal attacks out of the messages. If you wish to exchange specific information that includes doctors names, phone numbers, (perhaps to talk to each other on the phone), and similar information, please do it by email between yourselves rather than posting it on the boards. These boards are as private as any messaging boards, and the words you post here will stay here. But while we monitor what is discussed for appropriateness, we cannot control who calls you if you post your phone number. Remember that advice given by someone other than your own doctor should never take precedent over the recommendations of your own care givers, and that the opinions expressed here are those of the individuals posting them, and do not necessarily reflect the ideas of the Oral Cancer Foundation. Of course all of this seems obvious, but we have to state it for the record. Welcome to our community.
[/quote]In other words, just about anything you think to say is pretty much fine.

Also, Amy, "thread" means topic basically.

Karen, good to meet you too, but I am sorry to hear Jerry is in the hospital. It's a lesson for me, at his expense to use the PEG. Thank you both for it.

I hope he recovers swiftly!

All you have to do is click on the number of posts in the bottom of anyone's post that you are reading and all their recent posts will come up in chronological order. A thread is a continuous train of thought being contributed to by many different people. When a topic thread gets off track, it makes it difficult for people to follow the train of thinking. So "high-jacking" someone's thread with a new idea is a no-no. Stat a new topic instead. Rules here are pretty simple and when you were asked to register and got your password etc., you had to click on an agreement that you would abide by them. If you can't find your way back to those rules and really want to read them, I'll post a link. The important ones basically were developed to ensure that every plays nice.... the rest relate to not posting doctor's names and phone numbers etc., especially if you a making a negative comment... and those related to religion and the boards. That one says something like if the original poster did not reference God, or religion in their original post, that following posts should also refrain from religious references...comments like

Besides immersion in water, are there any other lifestyle restrictions with the PEG in?

Will I be able to do just about everything else?

I read some other posts where people had limited function after their G Tube and was curious.

Thanks!

Michael

Hi Michael, I had no limitations at all. i showered, played golf (although towards the end, not very well) worked in the yard. I found it not constricting at all. It was a pain to have because it sticks out of your stomach, but it is really not all that intrusive. It healed in few days after removal. You just have to keep the area clean whike it is in.

Steve

Michael I will have to look that one up. I am all over the net checking out things as the ACS wants me to do some phone work for them with newly diagnosed cancer patients. Not for medical information but for moral support.
I will try and find it and get back to you.

Have a great day and eat all the things you love before next week.

Blessings,
Barb~

We found out this morning that Jerrys port was badly infected.They removed it.He has 2 chemo and 1 rad tx left.We are almost there.I will be glad when all this is over and he is cancer free.

Michael,

My very last word on this matter. I was not concerned about your feelings on the issues. I could see where this topic was going, and I did not like it. I ask to close a topic when it begins to drift too far off the original thought and gets cloudy. I see no problem with spirited discussions on here, but I do not like them at the expense of an on going topic that may contain valuable information. I don't see the need for it, start a new topic if you have a new idea. I don't see Brian complaining about the valid use of server space, use it. You need info on the PEG, it is already here. Use search first. While all of us want to help, common subjects like this
have been discussed at great length, pro and con, before. There is valuable content and comments to absorb from many previous posts. Does that mean that you shouldn't ask a question that has been discussed before? Of course not, but consider that some of the hard content, factual posters like Gary, Mark, Brian, and many others etc. have answered the same question 10 times before, and perhaps this generous giving of their time has some limits.... it might be beter to give them a chance to respondto the new ideas and problems. I am making assumptions here about their time etc. but it only seems reasonable to take at least a quick look at the posting history with a simple tool like the search engine first.

You want my list of things that piss me off that reflect ideas that don't need to be on this board?

1- Talk of killing a spouse, in jest or not.
2 -Talk of infidelity (I'm no prude, it just annoys me) with or without the God reference in the signature....don't get me started on the God reference in the signature, that in itself contradicts the ability to leave God out of your postings as the rules request in many cases where the original poster did not reference their desire to bring a supreme being into the discussions.
3 - Never ending Blogs with no purpose. Rosie's had real value, where hasshe gone?
4 - The new blog has created an atmosphere of "any language/topic goes" and while off cancer topics can be of interest to some, I think the intention of the blog section was for people to chronicle their travel through this process, not provide a place for meaningless babble.
5 - Where has ................... gone? (fill in name of highly
knowledgeable member that we know has not died).

We have lost too many good posters over religion, and the direction away from informational help over the
last year. People with backgrounds in oncology, nursing, and more. Why? Some just got tired of the religious tone of the board (something that Brian posted on extensively at the time) or that help and support were being sacrificed for discussion on things other than our issues with the disease.

Anyone here ever take a click over to the MSN Oral Cancer disscussion page? If not, go on over there and see where we are heading with some of these posts. We don't want OCF to follow that model. When I noted my feelings on the direction of the site, that is what I'm
talking about. There are pages of useless banter intermingled with one or two bits of valid information (at MSN, not here). My point is that this site is the stand out.

Just start a new topic and leave me out of this PEG war.

Oh, if some of you had not noticed in recent postings, I think there are a few broken board rules in the list!

Michael - please do not think of the weight loss as a result of treatment as a good thing just because you could use to shed a few pounds. For sure you will lose a bunch of them. But not getting the PEG and counting on the built of caloric intake from your body's consuming its fat stores in not a good idea. It is not just calories that you need to heal at a good rate (and efficiently), it is proteins and amino acids which are found in ...protein, not fat stores in your body. The radiation treatments are going to destroy healthy tissue at a rapid rate while they are destroying the malignant tissues. Each day your body is fighting a battle to keep the repair work going. This takes proper nutritional resources, and especially proteins and amino acids. If you do not get them by mouth or tube, your body will begin to break down your lean body mass, your muscles, to get what it needs. You will not only lose weight but you will lose the good part of your body mass as quickly as the fat portion of it. Most institutions use 10-15% body weight drop (overweight or not) to determine that you are not taking in enough calories, and other nutritional materials. At that point the decision to have or not have a tube is taken out of your hands and the doctors will see that you get it if you need it. Poor nutrition means slow healing, and a decrease in your body's ability to fight opportunistic BS like fungus, viral infections, and bacterial infections.... none of which is desirable. Radiation treatments and the inability to eat is not a great pathway to that smaller waist size..........

Micheal, I still have my PEG and haven't noticed any other limitations. As Steve says, it sticks out of your stomach and it takes a little while to get used to it being there but other than that it's not intrusive. The swimming thing is really the only limitation I know of.

FWIW, on the "to PEG or not to PEG" question, I was told at Dana Farber that if I did radiation with concurrent chemo (cisplatinum), they *required* that their patients get the PEG before starting. If I was to choose not to have the chemo, then they left the decision about the PEG up to the patient and just kept an eye on them.

There's good reason for this distinction if you read the New England Journal of Medicine studies that show how effective concurrent chemo is, one of the big differences between groups (rad with chemo or without chemo) in acute symptoms is the degree of mucositis that they experienced during treatment. Statistically it is simply much more likely, with chemo, that the mucositis will be so bad that you can't swallow, or can only swallow with extreme difficulty, at some point during treatment.

If you look at the signatures of those who made it through without a PEG who post here, many (most?) of them had rad but no chemo. I think that's worth being aware of in this debate.

Nelie

Michael
I had radiation only with no PEG and I lifted weights, walked alot and worked the whole time. I swim also but did not swim during the treatment because I was tired, and my mouth was sore and couldn't imagine the water and breathing hitting my mouth causing some pain. So from my perspective I really don't know that you will be able to swim but there are other carido and strenght things you can do and should feel comfortable doing.

As most of you know, I had the PEG "installed" on Monday.

I just wanted to update this thread one last time, and let it drift out into cyber space.

As far as asking questions that may have been answered in the past:

1) Things change all the time, and I encourage anyone to bring up issues that may have more pertinent data, or even more importantly a new board member's perspective on the particular topic.

2) If you ask a specific, targeted question, you can get asnwers that are more balanced to your issues.

For instance, I asked simply: "Can I swim with a PEG..?"

This resulted in pages of interesting information, some addressing the question, other's addressing questions I was thinking but didn't necessarily formulate.

This "banter" is healthy and important.

The irony here is the following:

I spoke to 3 surgeons and 4 fellows at Sloan.

Everyone of them say's once the incision is healed (5 to 8 days) swimming is NO PROBLEM.

So, in the end, it didn't matter, but we got a wealth of great conversation from the question.

Although, off topic for this thread, someone commmented about religion based posts.

For the record, it doesn't offend ME. I feel like we all have different views, and the world has several dominate faiths. It's important to some to be able to express their views, to the extent that it doesn't offend others.

Remember, a lot of what we say and do in a post can be as much for our own good as the person or people to whom we are posting.

Thank you John for the reminder that I may not even feel up to swimming! It's just after a sweltering NY summer day, a cool swim feels great! I will likely just want to curl up in bed with the AC on MAX and watch I LOVE LUCY reruns instead :-)

While I appreciate Michael's view that religious posts do not offend him, over the last few years we have found, in painful ways on this board, that they do offend some. We have gotten off into faith healing vs. treatment, cancer as something that God put in your path to be overcome (too many do not) God not giving you challenges that you can't deal with (please tell that to the family members of those who have lost their loved ones here), and more. We have seen Christianity, which is a religion that was taught as one of love and tolerance, to have proponents here with no tolerance as found in some people's postings, in particular a couple of years ago trashing a Buddhist poster that we had. (We won't go into various religions toll on humanity through the crusades, the Spanish inquisition, and so much more.) Those hurtful postings have all been deleted from these forums. We have had strong science people on the board get into theological discussions with creationists, finally leaving, and taking the valuable oncology based knowledge with them over it all

An 8 Ball? Brian, is that a clinical term? I did a forum search and all I got back was information on some kind of recreational activity.

Its the same as being black balled or in other terms...one that didnt fit in the group and had to be dealt with

I thought you got that from a well placed kick....

There is no mercy on these boards...... remember what they say about payback.