| Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 162 Likes: 1 | 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
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | 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.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 162 Likes: 1 | Thanks for clearing that up David...:) Ana
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | Joined: Apr 2012 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Apr 2012 Posts: 29 | 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
age 50,dx march 2012,tx start 16th may,rads 34 imrt,chemo 7,no surgery.HPV ?.stg 4 BOT plus 1 sliva gland and toncil,casual drinker,smoked 19yrs ago but had odd cig.cycles approx 10ks 5 days wk.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | 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.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Apr 2012 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Apr 2012 Posts: 29 | 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?
age 50,dx march 2012,tx start 16th may,rads 34 imrt,chemo 7,no surgery.HPV ?.stg 4 BOT plus 1 sliva gland and toncil,casual drinker,smoked 19yrs ago but had odd cig.cycles approx 10ks 5 days wk.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | 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.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Apr 2012 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Apr 2012 Posts: 29 | 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
age 50,dx march 2012,tx start 16th may,rads 34 imrt,chemo 7,no surgery.HPV ?.stg 4 BOT plus 1 sliva gland and toncil,casual drinker,smoked 19yrs ago but had odd cig.cycles approx 10ks 5 days wk.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Apr 2012 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Apr 2012 Posts: 29 | 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
age 50,dx march 2012,tx start 16th may,rads 34 imrt,chemo 7,no surgery.HPV ?.stg 4 BOT plus 1 sliva gland and toncil,casual drinker,smoked 19yrs ago but had odd cig.cycles approx 10ks 5 days wk.
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