Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#183188 07-08-2014 08:03 AM
Joined: May 2014
Posts: 56
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: May 2014
Posts: 56
Today is my husbands last radiation/ treatment day!!
Very happy he's done very good side the mucus it's been terrible and still is so I'm hoping that gets better along with his healing time!!
We saw the rads Dr. Yesterday Monday ) and he said the tumor had responded very well to radiation he said it looked amazing in their and the tonsils looked good that was great to hear .. I could not wait to post that he's finished with this step I didn't know coming into this that it would be so hard on him and I both
Next is the getting over this part .. Over the part where he's felt baked from the radiation ,, he can start to rest and focus on getting better even tho we know we still have some time to heal !! It's still great to have this part behind us the two hour drive from home and two hour drive back home (I won't miss at all ) we will come back next week to see the dr . He just wants to see how the neck is healing I'm sure we will still make the drive once a month or sooner till the dr . Fills Larry's ok I'm not sure when the peg! Will come out ? I'm assuming it will be when Larry can swallow foods again he's done so well with swallowing water he's not quit even if it's just a little he is still taking some down .. We're using the peg for fluids and will continue too,, for now,,


Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads..
2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Congrats!!! Boy I bet the weight of the world is off your shoulders now without having to spend 4 hours a day in a car. This will make things much easier on you both.

Keep your focus on his intake. He still needs the daily minimums of at least 2500+++ calories and 48-64 oz of water daily. This needs to continue (at the least) until he hits the one year post rads mark.

Dont be surprised if you dont see any improvements for a while. The rads are still working just like he is still going to get zapped. The next few weeks are the hardest, so be watchful for any setbacks like dehydration, excessive fatigue, etc. About 3 weeks from now the worst will be almost over and recovery will start. Its a slow and frustrating time for most of us patients. We all want to be better the day after finishing rads but it simply doesnt happen that way. A complete recovery can take a full 2 years (especially the sense of taste).

Dont rush to get rid of the PEG. Until your husband can sustain himself for a full month without using the tube he is not ready to have it removed. Its a temporary tool that is there to help and soon enough it will be gone. Most patients hold onto it for a few months post rads, some take longer to recover and keep it around just in case they have a setback. Never know, recovery is a tricky period of ups and downs.

Hope you are being kind to yourself. You deserve to be congratulated too, without your help your husband would have had it much harder. Good job!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
Congratulations. Not having to go in every day will be such a relief.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: May 2014
Posts: 56
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: May 2014
Posts: 56
Thanks Christina thank you for all the answered questions I had along the treatment (:I know I had a bunch I'm so thankful for all the OCF people.. This site truly was a blessing and will continue to be as we go trough the healing process ! And yes I'm so thankful that long five days a week for seven weeks drive is over (sheww) that's a mouth full .. We will keep the keep the peg as long as it takes The mouth wash seems to be helping with the rawness he's feeling from the rads .i did mix my own up from our family dentist who give me a really good oral rinse along with the prescribed oral rinse from the rads Dr.k


Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads..
2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Congratulations to both of you! This is certainly a huge milestone. Best wishes for continued and quick healing.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Oct 2013
Posts: 559
Likes: 1
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Oct 2013
Posts: 559
Likes: 1
Congrats on completion of this milestone.

Like Christine said above you've still got a ways to go. Recovery can seem as trying and difficult as treatment. The first seven weeks may seem pretty rough, literally as if you were still in treatment. Weight loss can still continue (I lost 10 more pounds after treatment ended). Food taste will be SLOW to come back (and once it comes back it may go away again for awhile). Mucositis and ropey mucous and thrush and uncomfortable or dry sinuses, those are all just part of the game.

I don't want to be the bearer of bad tiding on this happy day of treatment completion; just don't get your hopes up that from here on out it's just a walk in the park. You will get there, but the operative word is "slowly" (and sometimes you'll even feel you're going backwards).

Now, go out and try to be happy.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Did they throw him a party in the rad room?They took pictures of me and my mask and put it up on their wall with others. I was too weak to smile much. Congrats and now let's get thru the next 2 to 3 weeks and then we celebrate what we call walking out of the tunnel.


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 2014
Posts: 56
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: May 2014
Posts: 56
David they didn't throw A party ):if they did I wasn't invited !!! I waited on Larry to to walk out with his mask ! I said where is you're mask?let me get it for you ,
He said no !! They ask if I wanted it I told them no! I really wish he would have got it but I'm sure he really wants to put this behind him with no memories in hand he will remember as time goes on ,,,he's went trough to much hell to forget ........ David I can't wait for the weeks and months to go by ,,even tho I hate to rush time this is when most like me would like for it to Fly by,, it's just been the mucus that's been the PAIN!!!! Here ..the neck the radiation and all that stuff hasn't been to bad even the pain hasn't been very bad trough treatment and were so thankful for that ,,it's been the mucus .i hope he can rest and heal from here out and just take it easy and Finley breath a little ,,


Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads..
2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
The thick mucus, sometimes called rope mucus, generally lasts 2-3 weeks after the completion of radiation. Sleeping on an incline may help, brushing, rinsing often, rinsing with seltzer water, tea, pineapple juice and or papaya juice, taking Robotusm or mucenex, drinking plenty of liquids. Using a Waterpic to get any gunk out in hard to reach areas, using sponge type tooth brushes on sticks to brush arounf the gums, back teeth area. I liked to have egg drop soup, which also helped clear my throat.

Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
As Paul says that crap stays around for a few weeks and when it stops then usually starts the dry mouth phase so just be prepared if it does. For a while I had a bottle of water in EVERY room of my house just in case I forgot to take it with me which I did often. I also learned (the hard way) to keep spare bottles in all cars I might drive in. I left soooo many bottles in stores and of course wouldn't remember until I was out of the stores parking lot so I was left with the choice of returning to get it or driving without water until I got home. The latter always was a bad choice so that's why I started carrying extra bottles.


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.
Page 1 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5