Previous Thread
Next Thread
Print Thread
Page 2 of 3 1 2 3
FRANK G #80755 09-19-2008 04:09 PM
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
Andrew:

Just checking up on you. Hope you are feeling a little better.


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 2008
Posts: 117
Likes: 1
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: Apr 2008
Posts: 117
Likes: 1
[quote=ChristineB]Andrew:

Just checking up on you. Hope you are feeling a little better.
[/quote]

Thanks Christine. Unfortunately, I continue to get worse. And it's not for lack of seeing doctors or following their advice. I gained weight, I do mild exercise per a physical therapist, and take anti-biotic. All things the oncologist said to do. Plus I take supplements another doc suggested. But I continue to get worse.

Anyway, more tests were done. Maybe they will show something. I can't take this decline much longer. I can't afford a nursing home.


Squamous cell carcinoma base of tongue. Lymph involvement unclear; staging placed at "2 or 3." Biopsy 4/18/2008. Treatment: IMRT every day for 7 weeks. Cisplaten once a week to sensitize cancer to radiation. Treatment ended 7/16/08. PET/CT shows no more cancer.
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

Andrew

Im really sorry to hear you arent feeling better yet. Are you able to get your insurance to cover a visiting nurse? Do you have a peg tube to help get nutrition? Im glad to see you have been back to the doctors. Dont let this get the best of you, keep going back if you dont feel well.

Your treatments havent ended that long ago where your body is still recovering. Try not to get discouraged. Radiation can take many months after treatment ends to feel almost back to normal again. Hope you feel better very soon.


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: 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

Andrew:

Next time you go to the doctor, ask them about hyperbaric oxygen treatments or HBO for short. I was in pretty lousy shape when I started them in July. It has worked wonders on me and helped me to heal so much faster. It takes about 6 treatments before you suddenly start to improve. I cant say enough good things about it, HBO may help you bounce back. Its worth a try.


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 2008
Posts: 117
Likes: 1
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: Apr 2008
Posts: 117
Likes: 1
Hi. I thought I would post some good news. My constant decline stopped about a week ago. And then I had about 5% improvement. Then it went down and up and down and up. But this is much better than going down, down, down. The big turnaround was when I saw general practitioner up the street from me who gave me Amoxicillin.


Squamous cell carcinoma base of tongue. Lymph involvement unclear; staging placed at "2 or 3." Biopsy 4/18/2008. Treatment: IMRT every day for 7 weeks. Cisplaten once a week to sensitize cancer to radiation. Treatment ended 7/16/08. PET/CT shows no more cancer.
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

Andrew, thanks for posting an update. Im so glad to hear you are doing better. Sometimes a good family doctor is able to fix you up. Mine sure helped me after I went from specialist to specialist and they all were finger pointers to the next doc. Hope you continue to improve now that you are back on track.


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: Jun 2008
Posts: 309
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Jun 2008
Posts: 309
i would suggest seeing about getting on some beta glucan and coq10 to help your system get up to snuff quicker... treatments really zap the body and we must rebuild it to a healthy state in order to continue gaining strength and health. both of the ones i have listed help the immune system rebuild and give more stamina ... here is wishes for you that you continue to improve daily.


Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

===============================

"Those who think by the inch and speak by the yard, should be kicked by the foot."


Joined: Apr 2008
Posts: 117
Likes: 1
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: Apr 2008
Posts: 117
Likes: 1
I know I posted about this a long time ago, but I have a need to close this chapter by posting more about what happened.

What had happened is I developed an infection in my upper respiratory track, mostly in my throat. And because I had just been treated for oral cancer, everyone was trying to attribute my symptoms to that. So some were suggesting post-treatment depression. Others were saying "everyone feels bad," which ignored that I was getting worse after treatment ended. But I knew I was really sick, even though none of the medical team would believe me.

The doctor who finally gave me an antibiotic that worked was not part of that medical community. And he simply believed what I told him about the symptoms. And in the months after my last post my health slowly came back. Although, not completely healthy, because I was in bad health before I was treated for cancer. But whatever it was that was bothering me back then is gone.

I was reminded of all this very recently because I started to get that same sick feeling I had back then. And my cancer follow-up ENT doc was not taking it seriously. So I went back to the place that had helped me before, was told I had a nasal infection, and with their treatment I'm starting to get better.

Last edited by Andrew111; 03-20-2014 12:34 PM.

Squamous cell carcinoma base of tongue. Lymph involvement unclear; staging placed at "2 or 3." Biopsy 4/18/2008. Treatment: IMRT every day for 7 weeks. Cisplaten once a week to sensitize cancer to radiation. Treatment ended 7/16/08. PET/CT shows no more cancer.
Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
Likes: 1
Andrew,
Thanks for the post. It is a great reminder to seek second opinions when something does not seem to be working out or making sense. Glad you are getting things resolved. Maybe it is time to reconsider your ENT.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Jul 2011
Posts: 945
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2011
Posts: 945
Andrew - thanks for the follow-up (and glad to hear you are cancer free).
I think that specialists have a tendency to focus on their specialty (although you would think an ENT would be able to figure out a sinus infection), hence the value of seeing a really good PCP without a specific agenda. Hope those antibiotics do their job quickly!
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Page 2 of 3 1 2 3

Moderated by  Eva Grayzel 

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