Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#139879 09-12-2011 06:45 PM
Joined: Mar 2011
Posts: 26
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Mar 2011
Posts: 26
I am still so confused. I thought a metastasis would be closer to the source...lung or head/neck. My husband's is to the pelvis and he is having different protocol of chemo to see if the cancer responds. I recently read on a very old post that you could have radiation to the bone and that has not been mentioned. Help clarify somebody!

Scc dx 1/11
Surgery: removal of tonsil bot w/ clear margins 2/11
Radical neck dissection 2/11 70 nodes removed (14 positive)
Imrt rad 35/cisplatin 3 cycles
6/11 pet scan - dx metastasis to pelvis & femur
Current treatment: carboplatin, Erbitux, 5 Fu
Currently in chemo


Robin, caregiver to husband, Andy (57 yo non-smoker)
1/2011 dx scc stage 4 -primary- tonsil/bot
2/2011 surgery/rnd/ imrt rad/ 3 cycles cisplatin
6/2011 recurrence - mets to bone
7/2011 tx carbo/erbitux/5 FU- pet showed disease progression
11/2011- present clinical trial

Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Ki owish I could hel. As far as I know you can have radiation to bone - I'm sure someone who knows for Aurelius will be along soon. Take care! I'm sorry you're going through this!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Cheryld #140812 09-29-2011 10:21 PM
Joined: Mar 2011
Posts: 26
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Mar 2011
Posts: 26
Seems like Andy is in uncharted waters...not typical to have such a distant metastasis. Been in touch with Brian and he confirms that this is unusual.
Andy had his pet scan Tuesday and we meet with his oncologist next week to find out if the mets are responding to new chemo regimen. Waiting is so hard as you all know.
The saying "expect the best, but prepare for the worst" is a hard one to balance.
just gotta get through the weekend. Thank goodness for glorious weather, some live music, and Alabama football. Also, the movie "50/50" is coming out tomorrow...anyone planning to see it?
Appreciate any words of wisdom from those of you who have dealt with recurrence.
Sincerely, robinleigh


Robin, caregiver to husband, Andy (57 yo non-smoker)
1/2011 dx scc stage 4 -primary- tonsil/bot
2/2011 surgery/rnd/ imrt rad/ 3 cycles cisplatin
6/2011 recurrence - mets to bone
7/2011 tx carbo/erbitux/5 FU- pet showed disease progression
11/2011- present clinical trial

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
Robin, please add a signature. It will help get more responses, people will understand the situation easier.

Click on the 'My Stuff" tab. On the drop down menu select "Profile". Scroll to the bottom and type in the white box, hit "Submit".

Recurrences are not easy to go thru. One thing to remember, you both are now much smarter about cancer. You know all the jargon and understand so much more than the first time. Have faith that everything will be ok.

Im a huge movie buff but no, I will not be seeing that movie. I am not able to watch things like that, it bothers me seeing comedy made out of tragedy.

Last edited by ChristineB; 09-30-2011 05:23 AM.

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: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Hi there - I think recurrence is something we all fear... The distant mets is scary but should be treated with the same effort that the first cancer was. Do the one foot in front of the other thing and live for the now. I know it feels a little like his body has betrayed him in some way, but (because I've thought about this a lot) you both need to ask yourselves did I do everything I could? Am I? Part if the reason I went through chemo and rads and had radiation bilaterally was for this very reason. So if the answer is yes then continue to fight do what you can on your end to maximize the effects of the chemo and by trying to stay healthy. Don't live for the cancer - it is a part of your life but not your life so despite cancer being in the back ground - do what you can and what you like. So as I said live in the now - not going to see 50/50 and I don't watch the big c - a little to close to home for me right now! Hugs! Have a good weekend and hoping you get great results next week!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Cheryld #141281 10-08-2011 09:21 AM
Joined: Mar 2011
Posts: 26
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Mar 2011
Posts: 26
Bone mets have progressed so this chemo regimen was ineffective.
I hope none of you face a recurrence but, I wanted to pass on the site that registers all clinical trials. It is www.clinical trials.gov and is very easy to navigate. Andy is eligible for a phase 3 trial so that will be our next step. He may have some radiation to the bone first and then we will wait 28 days before starting the trial. That is one of their criteria.

Meanwhile, we are going to embrace the blessings we have in life...especially on a 28 day break from chemo!

Robinleigh
Caregiver to husband, Andy 57 yo
Dx scc Jan.2011 tx tonsil/bot surgery - radical neck dissection - imrt radiation
concurrent with cisplatin chemo
Dx metastasis to pelvis/femur june2011 tx carboplatin/Erbitux/5FU
Dx disease progression in bone October 2011 tx pending decision


Robin, caregiver to husband, Andy (57 yo non-smoker)
1/2011 dx scc stage 4 -primary- tonsil/bot
2/2011 surgery/rnd/ imrt rad/ 3 cycles cisplatin
6/2011 recurrence - mets to bone
7/2011 tx carbo/erbitux/5 FU- pet showed disease progression
11/2011- present clinical trial

Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Hugs to you and good luck with the trial!.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Cheryld #143611 12-04-2011 03:00 PM
Joined: Oct 2011
Posts: 4
Member
Offline
Member

Joined: Oct 2011
Posts: 4
New to forum. Diagnosed squamous cell carcinoma under tongue in 1990. Removed surgically. No radiation or chemo needed. Reoccurence in 2005 under tongue much deeper. Surgery completed and did not do free flap but were close margins. Three lymph nodes positive for squamous cell carcinoma. 31 doses of high radiation given. Cannot taste anything and mouth very dry. Reoccurence in 2009 squamous cell carcinoma of tongue and left jaw. Radical neck resection completed. Titanium bar put in to rebuild jaw. Free flap surgery. Trach and feeding tube after surgery. Fall 2009 started carboplatin every three week Sept thru Nov. February 2011 started on Erbitux and Taxol weekly. Went off Taxol in May2011. Second week of Jun 2011. Severe pain in jaw.
Went to different doctor was put on Erbitux weekly starting July 2011 to see how it would work.Not responding so added Taxolto the weekly treatment of Erbitus. Have had three treatments. Experiencing ear pain and severe jaw pain. Last pet scan showed little increase while cat scan showed cancer spreading deteriation of bone and implant hardware. Fistula has developed at sight cancer metasticized on skin. Fistula is getting larger and opening is larger than the size of your thumb nail. Opening looks angry and is constatntly draining. Am keeping it packed w gause. Through previous surgeries Ted rarely took any pain medication. He is taking his pain medication regularly just to be able to try and eat. It is getting more difficult for him to open his mouth and harder to come up with things he can eat. He has no taste as the radiation six years ago killed any taste buds. Any suggestions would be greatly appreciated. His last surgery was April 12,2009, on his birthday. It will be two years in April 2012.

Thanks
Debbie C

TedC #143619 12-04-2011 11:08 PM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Have the tried removing the titanium... A lot of people have a bad time with it... Maybe they can rebuild his jaw out of his leg bone? That woul eliminate some of the cancer - and maybe reradiation. A few here have had more than one round with it. Good luck. Wish I could offer more help.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Cheryld #144372 12-30-2011 06:17 PM
Joined: Dec 2011
Posts: 2
Member
Offline
Member

Joined: Dec 2011
Posts: 2
Debbie and Ted are very brave! its a story like theirs however that if I should have a recurrence I will not even consider anymore treatments. One and done Im not the one. Hopefull my post will not spark a fire storm of anger.


Stage 4 throat cancer, treatment began 2/2011 ended 7/2011 6weeks radiation, combo 6 months cemo, lost 65 lbs. became addicted to morphine, oxycotten, oxycodon, this was as bad as the actual treatments, kicked the dope in spite of those dam nurses.
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