Previous Thread
Next Thread
Print Thread
Page 2 of 2 1 2
Joined: Apr 2010
Posts: 9
Netsky Offline OP
Member
OP Offline
Member

Joined: Apr 2010
Posts: 9
Dianne- I just read your reply-Do you live in Rochester? I am up here taking care of my dad he is West Irondequoit. I live in Mississippi but grew up in West irondequoit. We have a good schedule worked out between my sister and my aunt in Boston my dad will never be alone. He is also doing Cisplatin 2x a wk every 3 weeks. He hasn't had a peg but failed the swallow test and now very worried about lung aspirations. Anyhow- i am spending lots of time up here.


Caregiver to Dad. 8/09 Stg 3 SCC of buccal mucosa.
T2N1M0 extracap spread
Surgery/RX complete 12/09
Reoccurrence 4/10 Stage 4 Mets to bilateral nodes & base of skull
40 rx & 2 rounds cisplatin
Hospice 7/29/10 .....died holding my hand 8/4/10
No smoke/No smokeless tobacco
Joined: Jun 2009
Posts: 440
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Jun 2009
Posts: 440
Loratab isn't strong enough.... he needs to be on a long term pain regimen, like a fentanyl patch as well as a short quick action pain regimen like MS Contin or similar. Have a word with the doctors and get his pain under control, it's not acceptable for him to be going through pain.


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
Joined: Jun 2007
Posts: 10,502
Likes: 1
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: 10,502
Likes: 1
Netsky, I am sorry to read about your father. As several people have mentioned...pain patches will ease his pain. It is changed every 3 days and he should have something for breakthru pain too. By now I am hoping he has gotten on the fentanyl patch.

If he failed the swallow test, how is he taking in anything? water? medicine?. No wonder he feels so bad, malnourished and probably dehydrated on top of everything else. Poor man. He needs some type of feeding tube right away!!!

When I read posts about someone suffering like this, its so unfair. Is he being treated at a cancer center? It doesnt sound like the doctors are on top of his care at all. Speak up til you get results.


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: Apr 2010
Posts: 9
Netsky Offline OP
Member
OP Offline
Member

Joined: Apr 2010
Posts: 9
Hello everyone wanted to update you on my Dad. I just returned from my second extended stay and am regrouping with my nuclear family now. Gearing up for the next trip up there in a week. Okay here we go- Happy to report the pallative radiation is working. His pain now is mostly at 1-3 but can go close to zero with the meds. He is doing his second round of Cisplatin this week and rad everyday. In regards to the swallow test his epiglottis not functioning properly and down to 1 vocal cord. About a third his intake going to trachea but he has had therapy to help. Up to this week been okay but now his mouth is full of blisters from the rx so don't now how we gonna deal with all the lidocaine and making sure he gets nutrition. He is such a fighter told the rx therapist to fry him on the table. He said I am a tough SOB. God love him. Christine about the PEG , he really never wanted it to begin with until they warned us of aspiration pneumonia then he was on board. But the Med staff doesn't feel he needs it because he is doing okay job w/ nutrition and doing the coughing to get the stuff out of trachea. I think it may also be an ethical question? My sister and I and my aunt are just spending all our time trying to get quality time with him. I have to say just seeing him not in that debilitating pain is a relief but scared at what is around the corner. Just taking things day by dad being thankful and prayerful.


Caregiver to Dad. 8/09 Stg 3 SCC of buccal mucosa.
T2N1M0 extracap spread
Surgery/RX complete 12/09
Reoccurrence 4/10 Stage 4 Mets to bilateral nodes & base of skull
40 rx & 2 rounds cisplatin
Hospice 7/29/10 .....died holding my hand 8/4/10
No smoke/No smokeless tobacco
Joined: Jun 2007
Posts: 10,502
Likes: 1
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: 10,502
Likes: 1
Your post mentions concern about maintaining nutrition. A feeding tube weather thru the stomach or nose would solve the problem. I dont know of one person who had a feeding tube that WANTED one. Very few tough souls sail thru tx without the feeding tube and without other problems like mouth sores.

Best of luck with your father.


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: Aug 2008
Posts: 238
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Aug 2008
Posts: 238
I am so very sorry that your Dad and your family have to go through this. I will be keeping you all in my prayers. Take care.

Nancy T


CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
Joined: Jun 2010
Posts: 27
"OCF Down Under"
Contributing Member (25+ posts)
Offline
"OCF Down Under"
Contributing Member (25+ posts)

Joined: Jun 2010
Posts: 27
I lost my Mum to a brain tumor. Its not bloody fair. Now I have SCC of the tongue at 45.I am with the others NO NEED FOR PAIN! you and your Dad are in my thoughts Tony


lyph node positive 10/08
Parotodectomy 4/09
Rad six wks 65 grey
Pet scan clear 03/10 no primary
Pet 01/10 base tonge primary
CT 3.5 Tumor 01/2010
radical tongue reconstruction
with forearm flap 2/10
severe Trismus 06/10

Page 2 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,502
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,751
Newest Members
rkinjo, Garvin, KathDE, Darcy67, MJK
12,622 Registered Users
Forum Statistics
Forums23
Topics17,903
Posts195,722
Members12,622
Most Online458
Jan 16th, 2020
OCF Awards

Powered by UBB.threads™ PHP Forum Software 7.7.5