| | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Wendy,
When it rains, it pours.... that is for sure.
When I was having the radiotherapy- 5 days per week and chemo every wednesday, they would do a blood test every Tuesday, the day before chemo to make sure that everything is ok to proceed with the chemo. They did that the day day before every chemo session.
Steve will also be fitted for a mask that he will have to wear every day while he is having the radiotherapy treatments, it can be pretty spooky. I had no warning of this beforehand so it scared the crap out of me. There have been a number of posts here about it so it would be worth reading up on that also, another thing to add to your list of things to do..
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Thanks Karen, he has been fitted for his mask already and handled it really well. Luckily for him he's never been a person that can't tolerate stuff like that so it helps. He doesn't like the blood tests though. Will go through everything else without an ounce of whinging but when it comes to that needle he looks away and nearly squeezes my hand off. The masks are funny looking things aren't they. We were trying to come up with a super hero name for him for when he was wearing it but so far no luck. Just trying to keep our sense of humour really. But thanks again for your advise. It must have been very scary for you with the mask, with no forewarning. I know I would hate it. I hated even watching him being fitted for it.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started. 17/03/22 lost the battle. Missed dearly
| | | | | 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 | Wendy,
Maybe you should look into getting a port. I think it should be standard for this Tx anyway.
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: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Hi David, what is a port and how does it work. I have no idea. But I do know what a peg is although am yet to learn how it works but at least I'm a quarter of the way there.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started. 17/03/22 lost the battle. Missed dearly
| | | | | 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 | The port is a "devise" which is a temporarily permanent procedure that involves the insertion of a catheter into a blood vessel to provide a painless way of drawing blood or delivering drugs and nutrients into a patient's bloodstream over a period of weeks, months or even years. It is usually hidden under the skin so you can takes showers etc without worrying but anytime they need to draw blood or give IV fluids they will always have an entry place. I became very dehydrated and was constantly having to have fluids and blood work and each time it would/could take them forever to find a vein. Many times they had to call "THE VEIN EXPERT" to hook me up and that was usually after several Rookie attempts failed. Not fun when you feel like crap to begin with.
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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Wendy,
Can't say enough about the port and what a godsend it was for my Bill who is slightly needle-phobic. His was placed in the clavicle area of his upper chest at the same time his Peg tube was placed. Both were so helpful thru treatments.
Blood tests..IV fluids and of course, chemo was so much easier with the port and did not cause the pain that accessing a vein does. Bill just recently had his port removed under twilight anesthesia...a piece of cake.
Best of luck as you start this journey...keep checking in here for your sanity's sake...we all have been thru it.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
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