Previous Thread
Next Thread
Print Thread
Page 3 of 5 1 2 3 4 5
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
So glad things are looking up! And good for you for being such a great caregiver!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Joined: Jun 2007
Posts: 10,507
Likes: 7
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: 7
What a turn around! Thats terrific. You have made a huge difference in your brothers life. So glad you have helped him to at least give it a shot.


I sent you a private message with info how to add a signature. It really is important in helping us to help you.


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: 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
Some good news! Good luck with treatments.


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
What type of chemo and how often will he get it?

Focus on the calories and hydration now. PLENTY of both EACH and EVERY DAY.


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: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
Good luck with your brother's treatment. He's lucky to have such a caring sister.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Mar 2013
Posts: 421
Likes: 1
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Mar 2013
Posts: 421
Likes: 1
That's great news and Dana Farber is one of the best in the nation! He'll be in good hands.

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
Joined: May 2013
Posts: 24
AWW Offline OP
Member
OP Offline
Member

Joined: May 2013
Posts: 24
Thanks all - his head seems in a better place. He is building his courage to fight the fight. God bless him - he is so scared. He is 60 and hasn't seen a doctor in 50 years.

I have to fly back to LA and he will see a pain doctor, nutritionist and psychiatrist while I am gone (all at Dana Farber - what an amazing place). He had his scan/fitting for his RT mask today, goes back on the 13th for films to double check mask fit. I come back to be with him when he starts the Radiation and cistplatin on the 17th.

As you can tell, I live in LA and my brother is out here in Boston at Dana Farber. I am lucky that I am a Professor so I get more freedom in the summer. I was thinking that I would fly in to get him started and then come back when the going startes getting tough.

For any of you when went through the 7 week RT/Chemo treatment, when would be the time when he would start to be really feeling the effects of the treatments?

(And I started a signature below - how did I do?)


AWW, Brother of Dave, 60
Pre-canc 10 years ago
Biopsy Dentist 10/12
Stage 2 SCC 2.5cm
no action
5/13 to DanaFarber
Examined by Surgeon, MO, RO
PET, CAT
Stage T4, 4.5cm, no METs, or lymph nds
Started treatment 6/17 - RT 5x/wk, Csptn 1/wk, for 7 wks - will end 8/5
PEG since his first week.
Treatment ended 8/5
Scans scheduled for 10/30, with FU appointment 11/6
11/1 - Treatments didn;t work. Tumor continues to grow.
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
Effects are usually felt 10-14 days after starting, and the last two weeks are the worst, up to two or three weeks post treatment for certain conditions, 3 months, and up to a year or longer for others. Good luck with everything.


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
Those that get the Cisplatin every week seem to fair better from it's side effects than those, like me, that got the 3 Big Bag Method. No study has proven his delivery method is less effective so that's a positive.

Each of us can react differently to the Tx and my experience on this site has shown appx 10% breeze thru as if nothing has happened to them; 10% have problems from day 1 and the rest will notice changes quickly but won't start to have problems until appx the 4th week of Tx and it will progressively get worse until 2 to 3 weeks POST Tx with those weeks post Tx by far the worse. Again he could fall anywhere in this range.

Has he been fitted for Fluoride Trays yet?

Have him record his TSH reading in his next blood draw. This number may become important if his thyroid craps out post Tx due to the amount of radiation damage.

Please encourage him to eat like there's no tomorrow, especially his most favorite foods. Most of us quickly lose our taste and that doesn't return 100% and may take up to 2 years to recover what it will recover. I didn't start to regain taste until my 4th month post Tx and really wasn't happy about my taste recovery until my 14th month. I would be prepared to discuss this with him when he starts to feel the decline in his taste.

Please encourage him NOT to use the PEG until it's absolutely necessary. Far too many end up life time dependent on the PEG as their swallowing muscles can quickly lose their memory of their function.

Also try and get him to visit this site. Believe me it can be the best thing outside of Tx. So much of this cancer and it's Tx becomes mental and much of that can be diminished by the knowledge that we collectively bring.

I, like many, would welcome the opportunity to talk to him one on one so if he's open to that PM me and give me his contact numbers. Same of course goes to you.


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: Jun 2007
Posts: 10,507
Likes: 7
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: 7
In addition to David's spot on advice, I want to add a couple items.

Your brother needs to begin networking and lining up helpers. He will need a caregiver, preferably a full time one. Anyone who offers to help he will want to tell them when the time comes he will let them know what they can do. He needs to write down every single person who offers their help and that persons contact info. This can be especially important if your brother lives by himself.

I would suggest calling The American Cancer Society and asking for some help there too. Your brother will eventually need someone to drive him to treatments. When taking heavy duty pain meds its not safe to be behind the wheel. The ACS has volunteer drivers who can drive him occasionally to his treatments for free. The ACS will also give up to $300 towards transportation costs to get him back and forth to treatments. If he would rather the $300 be used at the pharmacy that can be done too. The ACS will give his preferred pharmacy a voucher worth up to $300 towards his medications. It will cover co-pays but not over the counter items. The ACS needs documentation so its best to call now and get the paperwork finished before treatments begin.

There are so many important things to do when going thru treatments and recovery. One of the key things to getting thru this easier is nutrition and hydration. Every single day NO MATTER WHAT, he needs to take in at least 2500 calories and 48 oz of water. More is even better. I know it sounds like alot but his body is burning up calories at a very rapid pace and it will only increase. In my post rad days, I would take in a whopping 7000+ calories a day and I still struggled to keep weight on. Athletes take that much in during training cuz they burn it off so fast. Just get this into your brothers head its a necessity and it must be done so when the going gets tough he will keep up the calories and hydration. Ask the doc for a prescription for hydration in the chemo lab. By doing that a few times a week it will help him to avoid becoming dehydrated. This can be especially important with his kidneys with having chemo. He needs extra water to flush the chemo out of his system.

With having cisplatin, your brother needs to pay close attention to his hearing and report any changes immediately. Cisplatin is known to cause high frequency hearing loss. I was lucky to avoid this but Davidcpa wasnt. It can be something so small as a little ringing in his ears or a buzzing. His doc needs to know right away before any more of that chemo is given.

I know its too much to take in all at once. It can be overwhelming. Dont worry, we are here to help get you both thru this.

Good luck!!!


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
Page 3 of 5 1 2 3 4 5

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
amndlors01, Kval, iMarc845, amndcllns01, Jina
13,107 Registered Users
Forum Statistics
Forums23
Topics18,170
Posts196,935
Members13,107
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