#99071 07-09-2009 01:34 AM | Joined: Feb 2009 Posts: 21 Member | OP  Member
Joined: Feb 2009 Posts: 21 | Hi all,
we had had all sorts of good news after Joe's most recent round of chemo/rt/surgery this past spring. But bad news can't stay away. They thought he had an infection on his incision site, took a biopsy, cancer in soft tissue of the neck. Our doctors are telling us nothing can be done (seems a little early for them to say this since we haven't had the PET done yet).
I am trying to remain positive, at least until we see what the PET says, and we are thinking of trying to get into MD Anderson. But he says the pain is sort of in the back of his head and neck - I am so afraid. What if it is days, not weeks or months? He has this weird snore so now I feel like his airway is getting blocked.
What does the end look like? What on God's earth do I do with my boys? They are 3 and 5. I have already told them, but I am not sure I want them to see the ravages of the end, and then, I don't want them to miss even one second with their amazing dad.
my eyes are literally sore from crying.
CG to H, Joe, 30 yrs old. 7/06-stage I SCC removed from tongue. 1/08-radical neck rt side, 8 positive nodes, imrt/cisplatin 6 wks. 1/09-6cm pos node on left neck. IMRT and carbo/taxol/erbitux 6 wks, surgery in April. 7/09-recurrence left neck. Erbitux, taxotere, 2nd opinion scheduled at MDA...
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Angie, I am so sorry to read your post. My heart and prayers go out to your and your family. Your children are so young that you will need some help while going thru more treatment. Several members have been thru this awful part of OC and Im sure they will respond to you.
Please go to the cancer center immediately. Recurrances move very quickly so you must be aggressive in how you handle this.
Im saying prayers for you, Joe and your children.
ChristineSCC 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  | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Get to MDA ASAP and see what they say.
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: Mar 2009 Posts: 109 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2009 Posts: 109 | Angie, my heart is breaking for you.
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Angie if you need to talk or ask questions then pm or e-mail me and i am here whenever you need an ear.
love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Yes...Go to MD Anderson ASAP
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hi angie- Very very sad to hear of this recent development.
Maybe there is a test chemo he can try via MD Anderson.
My heart goes out to you. I wish that you weren't going through this.
We are here for you! Don't give up hope yet.
XOXOX k
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Geez angie,, go do anyhting possible but get him to the best as soon as possible. It;s bad enough christine had a reoccurenec again and now your man too, there just isn't justice in this world.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Feb 2009 Posts: 21 Member | | OP Member
Joined: Feb 2009 Posts: 21 | Thanks so much everyone. Our onco changed his tune a bit once he saw Joe - told us not to give up hope. Joe cannot have any more surgery or radiation in his neck, but chemo is still on the table. So although we have lost two important weapons, we still have one left. We do not know how far this has spread - we are afraid because Joe has a lot of pain not only in his neck but in the back of his head. The scans are on Monday, and hopefully by Tuesday or Wednesday we will know more. The oncologist couldn't give us odds or his thoughts on how long Joe will be around without seeing the scans. So today - he is back in the cancer center, getting chemo (taxotere this time -- may also add Erbitux). The oncologist said that this drug should hopefully extend Joe's life and improve the quality of his life by keeping the cancer from growing. He also said that he himself had one patient who had a very similar situation to Joe, who was down to doing only chemo, and the cancer actually went away for good. And he has another patient right now with the same cancer which spread to his bones and lungs, and he has been able to go about his life for the last 2 and a half years as normal, treating it almost like a chronic condition. So there is still hope. Also, the oncologist is very much in favor of sending us to one of the big cancer centers to see if we can get Joe on a trial. We are leaning toward MD Anderson since they have a lot of cutting edge gene therapies that look promising. We have to wait until the scans are in, and then they will get everything together for us and send it down. So right now, I am just sifting through all the trials at all the major cancer centers, to see what I can find. Thank you so much for all of your thoughts and prayers!
CG to H, Joe, 30 yrs old. 7/06-stage I SCC removed from tongue. 1/08-radical neck rt side, 8 positive nodes, imrt/cisplatin 6 wks. 1/09-6cm pos node on left neck. IMRT and carbo/taxol/erbitux 6 wks, surgery in April. 7/09-recurrence left neck. Erbitux, taxotere, 2nd opinion scheduled at MDA...
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Angie
Ask your doctors at Anderson about CyberKnife radiation. I too was told at first that I could have no more radiation to my neck after getting 40 IMRT at the "maximum" of 72GY. It averaged out to a little less than 2 GY a day. So I had the surgery when the cancer came back but the pathology report was so bad, they said it would come back a third time. The CCC radiation team suddenly changed their tune and said CyberKnife. So I went in and got a full 5GY a day for a week for another 25GY. It was not easy, but I am proof that more radiation is possible, just as long as it's not more IMRT.
As my radiologist put it: we need all the help we can get.
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Apr 2009 Posts: 104 | Angie, sounds as if there is some hope with chemo? I can't imagine what you're going through. My thoughts go out to you and your family.
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Also maybe University of Chicago. . They are more pro chemo and even re-radiation - so I have heard.
Thinking of your Angie and praying for you and Joe.
KATE
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Jan 2009 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 62 | Angie, you and your family are in my prayers. I can't imagine what you are going through at this time. One idea I have for you is to contact your local Hospital's Hospice program. The one here has a children's program called Carousel. It's for kids going through what your's are, not just the sick children. They may even have a summer camp for them. Give them a call and talk to them. They are there to help you. Hugs, carol
DX 6/05 Rt Tonsil SSC advanced to lymph node. Stage 4b. RND, took tonsils, strips off the back of tongue, throat and nose. 19 lymph nodes removed only 1 bad. Once healed, 7 weeks of treatment including 35 IMRT, 7 Cisplatin, 7 Erbitux and 35 nasty Amophostine. Almost 11 yrs out now. Woooo Hoooo!
| | | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Angie, I am so sorry to hear that you and your family are having to go through this. I will be keeping you, Joe and your boys in my prayers. - Nancy
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Angie, since you haven't posted in a while, I presume....I hope!..that you have gone to a CCC, maybe MDA. I just wanted to add my prayers to those of others on the site. You and your family should not be made to suffer so. I pray for your strength and courage, and for your husband's healing.
XO--Colleen
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Angie, not much I can add to these posts. You are in my prayers and thoughts, Jim
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Angie,
Wow...everytime I read something like this, it still hits me hard. I hope you are not posting b/c you are at MDA and pulling out the big guns. It does sound like you have some hope with the chemo. Please let us know how you are doing.
xoxo
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Feb 2009 Posts: 21 Member | | OP Member
Joined: Feb 2009 Posts: 21 | We are in a holding pattern - just waiting for all the appointments to get set up. Good news is it hasnt spread anywhere beyond the neck, and the Erbitux already seems to be shrinking it. Thanks to all of you!!
CG to H, Joe, 30 yrs old. 7/06-stage I SCC removed from tongue. 1/08-radical neck rt side, 8 positive nodes, imrt/cisplatin 6 wks. 1/09-6cm pos node on left neck. IMRT and carbo/taxol/erbitux 6 wks, surgery in April. 7/09-recurrence left neck. Erbitux, taxotere, 2nd opinion scheduled at MDA...
| | | | | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 583 | Angie,
Hang in there.. I know how hard it is to wait for everything. It will drive you nuts!! Cancer is ONE big waiting game.
Glad to hear it has not spread.
All of us here are thinking of you...
Take care.. Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Thinking of you Miss Angie and praying for Joe. Much Love KATE
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Angie, I was happy to hear that you got some good news and will continue to hope and pray that Joe will be healed. God bless all of your family - 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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Angie,
Thank you for the update....that is good news that it hasn't spread.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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