Problem with having feed peg when on cisplatin - Oral Cancer Support

My husband is half way through treatment tomorrow,rads 5 days a week and chemo(cisplaten)one day a week.On Tuesday due to swelling of tongue ,mucos,and very sore mouth which caused him not to be able to eat and he was also havind trouble with his fluid intake the team decided to admit him to hospital for a week.Last night the surgen came to see my husband and said since he was on Cisplatin he would not advise a tube feed as those on cisplatin do not heal well after and there can be some leakagefrom the site in the future.The surgen said he would talk to my husbands team and advise against it.Just off the phone from my husband and he can hardly talk and said his mouth is very sore they gave him morphine last night and a syringe without the needle to apply a cream/fluid which really helps.My husband is also on warfren and has been for a number of years and this my also complecate things..Do you think they will be able to feed him through the nose or will he have to just try and get as much fluid and calories through his mouth.

He has a great team and is in a great hospital and up to this point is very positive and confident but I am afraid that as each new side effect comes it will get him down.

I think this site is great and for the last mounth have been looking at it every day to plan ahead .Because of you he had his hearing Tested , a speech thERAPIST on board .We have ordered the THERAbITE AND have A NEW BED WHERE YOU CAN RAISE THE HEAD SO HE CAN SLEEP BETTER.aLSO CAN YOU TELL ME WHICH MODEL OF WATER PIK (SORRY CANT REMEMBER EXACT NAME) TO buy.

sorry for mess in note but not sure how to incress size of box so will leave as is or wount get this off to you.

As you can see I had Cis but it was administered in the "Big 3 Bag Method". I refused to have a PEG insurted from the beginning and I never heard from anyone about a warning re Cis but that was 6 years ago. You are also the first to mention this in the 6 years that I have been on this site. All that aside I can't believe they haven't considered the nasal tube vs the PEG. I did give in post Rad and let them put in a nasal tube and I had it for appx 2 weeks (all that I needed). It was quick, almost painless and it did the trick for my stubborn butt.

GET THE NASAL TUBE

Thank you,I will tell my Husband I am collecting him at 4 and he will be home for a few hours to help our daughter with maths as she has an exam tomorrow.As regards cis and the feeding tube its seems funny to me as they have most of the patients they are treating on same schedual(5days of rads and one day of cis for 7 weeks)and from the start they said at some stage andy would most likely have to have a FT ,anyway I know more soon,thats great that the tube down the nose works.The name of the gel the nurse gave him is "Instillagel" and it comes prepacked in a syringe which makes it handy for applying inside the mouth.

Seana, my husband has not started chemo yet, that's coming in July, but we're looking ahead. Have you found the bed with the raised head has helped your husband's sleeping? I've read from others that they've slept in recliners, never considered a bed with postions, sounds like it might be helpful

AnaD
We got the templer bed its form america ,there are lots of different types of mattresses but its the bas that is important you want the one which lets you adjust the head and legs like the ones in the hospital we only have it 3 weeks but my hisband thinks it great and I think it will come in mors useful as time goes on.we go the humifider too its only about 25$ as someone mentioned this helps with dry mouth when your sleeping ,I dont know if it helps much but we use it.Lastly I went to a bicycle shop and got a drink bottle like you se them use on the TV with an attached straw which is great as when he get thirsty at night all he has to do is put the straw in mouth and suck for water no spillage and nolookingaround for bottle.Hope these things help .
seana

ANAD,
ITS A TEMPER MATTRESS THE ONES THEY DEVELOPED FOR THE ASTRONOTS AND AS MY HUSBAND SAID HE IS GOING ON AN ADVENTURE AND WONT BE BACK FOR SOME TIME!i THINK HE WILL HAVE NO TROUBLE FITTING BACK INTO HIS WEDDING SUIT.

Seana wrote:

"Lastly I went to a bicycle shop and got a drink bottle like you se them use on the TV with an attached straw which is great as when he get thirsty at night all he has to do is put the straw in mouth and suck for water no spillage and nolookingaround for bottle."

That's very clever - I think they call them camelbacks in the States! I slso like the idea of the Temper mattress with adjustable head and foot positions.

For those on a bugdet, one of those reading pillows with the side arms might also help. My husband used his big, ratty, overstuffed chair fairly often.

Hi Seana. My husband John had daily radiation (5 days a week) and weekly Cisplatin for 7 weeks. My husband had a PEG put in before treatments began and I don't know how he would have survived without it. Radiation keeps building and when treatments are over you still keep "ccoking". I have never heard of a conflict with Cisplatin and a feeding tube. A PEG is just another "tool" in this brutal fight. I bought John a pillow wedge and he would "try" to sleep semi-sitting/laying. Best wishes. Being a caregiver is hard work!

Hi - I too have never heard of any contraindications with cisplatin and a peg... In fact just the opposite... I had no problem with it going in and or coming out.. And no leakage. Or any other issue though I would like to say I couldn't use it because the formulas didn't agree with me. Most drs push for a peg - very surprised to hear your drs. claim. a peg can be priceless. The only negative I've found with them is that if you don't continue to swallow it can lead to swallowing difficulties after treatment is over.

Camelbak is a hydration device that resembles a backpack with a tube for sucking water. I used this when I first started back riding but found it dangerous and useless. Anyway that's different from a water bottle with a straw.

David...now you have my curiosity up...how have you found camelbacks dangerous and useless? I personally don't care for them, feeling they give a plastic taste to the water, plus I'm always concerned about their cleanliness. That said, hubby loves them. I'm wondering if there are concerns I should be considering as he uses them with a compromised immune system, Ana

My statements are totally directed towards their use when biking with a dry mouth condition and biking at the speed and distance I'm accustomed to. When biking at my usual speed, avg 20, you must be very aware of your surroundings. Taking your eye off the road or your hand off the handlebars for a split second can be dangerous. When you use that backpack you must take your hand off the handle bars and find the mouth piece and insert into your mouth and hold it (most of the time) while you bite down on the release value. Then you either spit it out or remove it. It's hard to maintain your speed doing this which can disrupt others following you and can even cause a followers tire to touch yours causing an accident. I also found that with my dry mouth I was having to such water appx every 10 seconds or so I just abandoned it. Still in my garage somewhere. Only used once. Priced to sell. Motivated seller!!!

I'm sure there are plenty of good uses for the Camelbak, not just at my speed.

Thanks for clearing that up David...:) Ana

Davidcpa,
the bottle i got was from a bicyle shop with a long straw which you bite on and suck ,its what they use when cycling,is there a problem with it and should i be sterlizing it every day?Andy got out on friday and has only one mouth sore now ,he is on those food supplements but can take soup ,drinks and some foot .tomorrow he will have a tube inserted in nose for any future problems,when I see his doctors I will ask about cisplatin and ? about concerns of surg. not wanting to do due to healing worries.andy is doing very well now we have the world Cup and the tour de france which is great and will be something he really enjoys.Did you sleep very little andy has about 4.30 hours at night and only now he goes for a rest during the day for 2hours ,he went off the striod last week.thank you for all your help I was at my sisters wedding on friday and only got back saturday afternoon I have told the health nurse here about this site and will tellthe doctors in the hospital.
seana

Anything he puts in his mouth should be clean so do what you can re the straw. Ask your pharm person what they recommend. He needs more rest. Try and get 3000 cals and 48 ozs of water in him EVERYDAY. Glad they put the nasal tube in him but don't forget he MUST continue to swallow daily. Some patients loose their ability to swallow by not swallowing. Try and use our Signature Line and give everyone a history of his Dx and Tx so each time we read your post we can relate it to his particular circumstances. Keep us posted as you are entering a more difficult period of his Tx.

davidcpa

how do i get your signiture line to add what i know so far,I dont know where bto find it on the site.where you short and angry with you wife when you were going through treatment? I am not dealing well with this bit,how can I help us both,to everyone else he is coping very well and sends out weekly emails which are very very positive but with me he can lose it at that slighest thing is this common?what can i do or not do to help?

To add your particulars under your Signature Line, go to the top of a page and enter the My Stuff tab and then click on Edit Profile and then go down to the Signature and type what you want and be sure to Submit it to save it. You can then modify it forever.

I have added what I know to signature section and will ask more specif info from docts. they have inserted a feeding tube and when asked that thought prob with cisplaten said was specific tube ? A is getting out tomorrow when i went to hospatel yerterday he said he did not want to talk to me and was very angry with me,i said ok and then went to docts to see how it was going.that evening i brought my daughter to visit and A gave her a toure of his section of hospital and my daughter said he was in good form.we have 4 children aged 19,17,15 and 14..

I have told my husband that i will do what ever he thinks is best for himand if he wants me to stay away and not speak I will do that .this is the worst part and i cant understand why you would hurt someone you love especilly when you are sick ,you only worry about what is important and do not fight over small things

Your husband is likely very frustrated and caught in the "why me phase" he's taking it out on you. Don't take it personally. He has to sort it out mentally for himself. Just tell him you love him and are there for him, and if he needs to talk, cry, or scream you are there for him and will be along side him, but will not be his whipping boy. That simple. He will hopefully get the message. I think sometimes men in particular don't like feeling vulnerable, scared, and weak. Which is what cancer does to you. Plus if you are the breadwinner (primary) that adds to the stress. As for the tube... and the dr. NO dr. should give you a hard time over a choice you make. It only adds to the stress you are already experiencing. You have to advocate for your husband, and yourself in a medical environment. A good dr. is willing to answer questions and is able to give reasonable intelligent answers and options. If asked why no peg tube, he should have been able to tell you specifically why it was a bad idea. Particularly when it is used more often than not because the treatment can be devastating, and cause major nutrition issues. And nutrition helps with healing and such. What he said to you is actually contrary to the rest of the medical establishment so you do have a right to know the reason behind his stance. It would have made more sense if he'd said he thinks that pegs cause a lot of issues with swallowing post treatment because some people tend to rely on them solely for nutrition and thus lose their swallowing reflex. But that is something that can be overcome with diligence, and coaxing ;o) It would be different if he were recommending standard care and you rejected it for some outlandish reason, then I imagine as a dr. KNOWING and seeing this stuff day in and day out, it might be frustrating. But as I said, he is going against the norm, you have a right to know why and then choose not to take his advice.

Any dr. who is threatened by a patient making an important decision about their care, is someone I would give a wide berth to.
hugs and take care.

The doc who came to see my husband to put in the tube we had never seen before and he said he would talk to ANDYS DOCTS/TEAM and tell them he thought A WAS NOT SUITABLE AS ON CISPLATEN,HOWEVER WHEN i WENT IN YESTERDAY THE DOC/REGESTER SAID THEY HAD INSERTED A FEEDING TUBE ,i WAS JUST A LITTLE CONFUSED AS THE SURGERN WE MEET IN ROOM DID NOT SEEM TO BE KEEN ,BUT ITS IN NOW WHICH IS GREAT.I WILL TRY TO GET THROUGH TO MY HUSBAND THAT I AM HERE FOR HIM AND LOVE HIM VERY MUCH (BUT NOT WHEN HE IS ACTING TOTALY UNREASONABLEO ,WHICH I WONT SAY AS HE DOES NOT SEEM TO REALIZE)THANK YOU

HI Seana

You mention your concern with your husbands behaviour and just wanted to let you know it is not unusual. It is very difficult but try not to take it personally.

My early posts were often about my Alex's behaviour and I described him as "a tantrum throwing 2 year old". Alex is the most gentle and balanced human being I know and his normal way of dealing with conflict is to negotiate his way out of it, so when the "tantrums" started, I was taken completely by surprise.

We had some quite nasty fights during his treatment. The fights Alex would pick would be quite unpredictable at times. I remember one day he accused me of choosing the wrong lane to drive in and when I reminded him that we were turning left in 200metres which was why I had moved into the left lane, his response was that I should have stayed in the right lane (on a 3 lane road) because it moved faster. Huh ???

I learned that besides the pain, fear and feeling of impotence which was causing a lot of his behaviour, there appeared to be an actual physiological reaction to the chemotherapy which also caused confusion and memory loss which led to frustration and temper outbursts.

Months later, whilst speaking with my father, I discovered he was experiencing the same thing with my mother (she was undergoing chemo and radiation for breast and renal cancer).

It eventually went away but not immediately. I can't remember when the tantrums stopped but think it was pretty much as soon as treatment finished. The confusion and odd conversations including forgetfulness went on for months although it diminished with time.

My old Alex is back now and I can't remember how long since we fought.

Hang in there Seana, it gets better with time.

I completely relate with what Karen said. Back when Vince came down with strep the night before his second chemo, we were faced with a choice. Call the med onc, report the infection (as instructed) or don't call, show up, then report it (how my husband was leaning). I pointed out that the real choices were:

1. Don't call the med onc, drive 2 hours each way, show up in the infusion waiting room, possible infect other folks on chemo with strep, with the strong possibility that we'd be sent back home without treatment

or

2. Get a quick test at a local clinic, call the med onc if it was positive, follow his instructions, thereby keeping Vince and other patients safe.

Hubby's rather perterbed response was, well if you put it that way, fine, let's get him tested and call the med onc. Even at the time, I remember thinking, yes he's pissed, and it sound like it's at me, but I know it's at the situation. He tested positive, med onc was glad how we handled it. We have since laughed about his rather irrational reaction....gotta keep the humor in this battle every chance you can.

When his frustration comes out, I remind myself that as tough as it is for me to watch, he's the one pysically going through this, a task I cannot even imagine. I think part of our job as caregivers job is to keep our heads, not take it personally when they get overwhelmed and always keep their return to good health as goal #1.

I have a friend who was going through cancer, thought his young wife would be better off if she "cut bait" and went on without him. Once she figured out he was thinking this way, she made it clear he was plan "A", "B", "C", etc her her life, that she was not going anywhere. You never know what they are thinking with all they are going through.

One more experience, on my husband's first chemo, they loaded him up with a ton of Benadryl before the Taxol, then came to talk about some pretty important stuff about 15 minutes later. I could look at his red-ringed, indpendently focusing eyes and know that none of it was sinking in. I think it's so vitally important that they have an advocate with them as much as possible while in the hospital, even if it's just a quite person in the corner. Take care Seana, you've got a heavy load with the responsibility of your husband and children, give yourself and him a break...hugs, Ana

thank you all,when they put A on the steriod DAX....(CANT FIND MY NOTE BOOK WITH NAME)about 10 days before he started treatment he was sleeping 3hours a night,full of energy ,I jocked to my family that if he was a carpenter i could wake up and find i had a new kitchen,our family doctor is a friend and when A started to become unreasonable i asked did the strodides have this side effectand then found on the internet from others that they could make you angry ,aggressive etc and our doctor noticed that A was really not himself and spoke to his team at the hospital.A went really wild one morning told me i was f... hopless,and lots more and he wanted a divorce.I was in real shock especially as the first mounth we were so close and I was "the best wife",I had checked so much on the internet and found lots of usefull info and felt we were somewhat prepaired.A at this time was focusing on work and other projects he never had time for I think it was his way of dealing with the C ,however he was also meeting the speech th.,and all the rest of the team and taking on board all there advice and doing his jaw exercize .IF I questioned anything he would exploid and them i was told i would have to go for councling or he was leaving (I forgot to mention 2 days into the treatment he left for 2 nights and only because i begged him to com back all done by email as he would not talk on phone did he come back)now A is not talking to me again and he wants the number or reciepts from councilor to prove i am going.I sent the two boys over to hospital last night to wathch the football and my son said he was in fine form and he is comming home later today,I have emailed and texted and may have been smart but i have said i am there for him and will do all i can but i cannot try to change him and i am only responsible for my behaviour.I have spoken to my family who are calm and wise and they have told me to play along and it will pass I will now forget about the hurt and ask for forgiveness .I am sorry that I fell into the trap of feeling I had to stand up for myself this is not the time ,things keep changing and i will try to learn and be better.we are a very lucky family and always have been and A has a great attitude to this and we will get through this ,we have no choice anyway.
seana

Hon there's a difference between being a good wife and a doormat - people do tend to get angry at the world when faced with this as it's scary and no one wants to face heir own mortality - but it sounds to me like he's the one who needs counseling. Going to a counselor isn't a bad thing for yourself either you likely need someone to talk to to put this all in perspective. It's very possibly his medication as well bu it's not fair to you to be poorly treated so don't blame yourself. Hugs!

[quote=Cheryld]Hon there's a difference between being a good wife and a doormat - people do tend to get angry at the world when faced with this as it's scary and no one wants to face heir own mortality - but it sounds to me like he's the one who needs counseling. Going to a counselor isn't a bad thing for yourself either you likely need someone to talk to to put this all in perspective. It's very possibly his medication as well bu it's not fair to you to be poorly treated so don't blame yourself. Hugs! [/quote]

What she said.

Thank you,A is home but not speaking to me I have offered to help in any way I can,I am the lucky one when I read the different sections and see all that you have and are going through I just feel now very sad that it has to be this way to waste time when it is a gift over crap hopefully things will change.I will go tomorrow to the hospital if A lets me and find out exactly A stage of C and ask again about HPV,SURGERY WAS NEVER AN OPTION as A is on Warfren ,but just yesterday I was reading about the Da Vinci robotic machine which they have used for BOT CANCER AND IT TAKES ONE HOUR FOR SURGERY ,they dont have to break the jaw and the wound heals naturally,the doctor was neil Tolley a consultant H and N surgen in london,in the artical they said it is gaining poperilarty in the US have any of you heard of this,I did see a program on TV on this machine but the operation was not for BOT however I did ask my GP to look into ,but at that stage we were a week away from starting treatment .If I am now in the wrong section and should be in caregiver do I just move over I dont want to take up someone eles space .

The Da Vinci robot has been discussed several times here. If you want to check out those posts, type Da Vinci into the search field and see what turns up.

Dont worry about being in the wrong place. While I do try to keep posts where they belong, other things can be much more important. Continuing on with your thread is never wrong

Best wishes to A with a speedy recovery!!!! Hope the moods stabilize too. Just remember, its not you that they are upset with.

Hi Seana,
It is normal and it does hurt VERY much. I can remember getting in the shower and crying in there so I was in private. Our guys are angry in the beginning, but Kevin soon got past it and we became a team. I pray this happens for the 2 of you as well. We had a feeding tube and the Cistplatin. I'm not sure where the confusion was there, but very glad it's in because it will most likely be needed.
Our job as the caregiver is a very difficuly one. We have to balance the care of the home, bills, food, children, our spouses...and somehow take care of ourselves too. It's VERY hard, but we are here to help you get through it. Vent here all you want. We've been there.
Please stay in touch.
Blessings,
Kathy

A left on saturday morning and said I could communicate wit him by email befor 5pm and that he would be back on saturday if I did as he asked.He was very very angry on friday night and I could see from his eyes that he was not well at all and said nothing .I slept in another room and went i got up found the message,I text him and said I would respect his decision and wanted to help and that the kids were fine(which TG they are as they think he is out are in hospital)The problem is he insisted I go to a councilor which i told him i have then he wanted there number and i said no that this was between me and the councilor ,then he wanted an invoice and then one which has been backdated and now it is the name and address of the concilor nad if i dont give him this he will not come back .I have said i would give an invoice as this is what i agreed to and in the last corrospondence said he could call or doctor if he wanted(as he is a friend and would his given me the name of C)I have spoken to our doctor who knowes that A is very high and has said that i do not need counciling that i am mentaly 100%.btu the idea of the doctors now putting him on more meds and messing him up more I really hate as both myself and my husband have never taken anything other then tablets for a headace .I do not take drugs however i smoke and drink wine ,,I have spoken to my family and they know A is not well and has abad temper and even when he is ok is extremly controlling.I have spoken to my sister and told her more ,she has been very good and advised that i keep telling him that i want to help that i am there for him that i love him and that we can deal with any of there problems when he i better.am i wrong I just hate the control he has over me and feel he is being unreasonable.I keep saying we are all reponsible for our own actions and that if he decides that he cannot come home there is nothing i can do if he does not accept the invoice.I know i am a good person like he is ,I kow i am level headed 90% of the time .I dont lose my temoer i dont shout ,I do not bring up past hurts fallings again , I am average .when my father was sick we had him for 2 years with lots of help and support from my family,When A mum was sick I from my fathers hospital experence and meds ,set up a diary of her meds ,memory etc as they siad she had a number of strocks and would never function again,we took her out of the hospital and 6 months later she was fine and lived on her own for 2 years befor she died .MY sister cannot understand how I have not stud up for myself as she said i am strong which I am .sorry i am going on to much,if i could turn back the clock cut out the hurt i would be a better person but a bit of me now is dead ,and i am the one going on when A is going through shit and now needs me the most. I am sorry..please excuse the spellings
seanasm

going to bed sorry for going on i have my family and my family GP who are giving me great advice and i know A is not well both the worst thing he has to go through now and them how he feels with us ,i am ok and know it is not personal and know in a few weeks /months things will have moved on and not to worry and try and keep cool and lodigical and not try and reason with him now all these things i have to keep saying to myself and i have the easy part he is going through hell and has noone there for him ,I so wish it could be different,but i am ok ,i am lucky to have family a great doctor who is a family friend who knows me well and is there all the time and no financial worries ,i am very lucky and i am sorry for going on about silly things ,I know now is not the time and i must forget about rubbish and act wike omeone who is totialy focused and notdo anything that will take away from A treatment.

You are NOT silly and we don't mind if you go on and on. That's why we are here. You are right, he is scared to death right now and while you understand it, you also have to be careful with his temper and be sure you are safe. I'm glad your family is supporting you as well as your Dr.
Keep in touch. Hope things get better.
Kathy

Cheers it is reassuring that some one else fights with fonts and nonsense when trying to get things off their chest. I am a young 53 and they wish to fix a peg next week I am In 2nd week of Chemo holding up well. I am 5 weeks away from radiation so your info is invaluable to me thanks for the "Heads Up"
Give the old man a high five from me.
Sleep well.X

Iam in week 2 of intro to Chemo,(I holiday weekend away that I would happily missed" but all the nurses excellent at Guys In LONDON I read your post saying a peg is a tool it is important to hear that things work well at different times. Iam on the hpv route so to hear such good things about your Hubby was a real boost. Thank You.
I am working out my signature when I get the hang of the terms.

I got on my Bike today for the first time in 12 months and felt great felt like I was telling that cancer to piss off and find some lazy drinking couch/sofa ( secetary required) potatoe to harass. Soory to all lazy fat coach Potatoes maybe if I chilled more I would not have got cancer.LOL

Seana I am giving my wife the best person ever for me right now some shit. Is it because I am on Steriods? Is it because I have a shitty illness? Is it because everything feels so important right now?

I am sure he feels sorry lots keep loving him and yourself.Sometime she offers help Ie: milk made you sick yesterday? Well right about now I want the biggest chocloate milk shake I can handle and I dont need reminded about yesterday. Cancer patients aint very patient with the people they love the most.
Send support through me to Ismary my Rock in this storm. LOL.

go girl go.

Keith wrote:

"Is it because I am on Steriods? Is it because I have a shitty illness? Is it because everything feels so important right now?"

Well, that pretty much sums it up. It's hard to remember to engage your brain before your mouth when so much is going on.

Maria