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#148716 - 04/24/12 08:54 PM Now we wait...  
Joined: Jul 2010
Posts: 531
SUEZ Offline
"Above & Beyond" Member (500+ posts)
SUEZ  Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2010
Posts: 531
AURORA, OH
Well it is with a heavy heart and a heavy sigh that I guess Ron is done with any more treatments or surgery. No chemo it would be toxic to him and would only add another 3 months, and the quality of life would not be what he has now. This is is Oncologist for his lymphoma who is saying this, I wasn't there of course cuz of my job...no clue which lung it is that he is talking about, very confused because of the biopsy surgery when he took out the wedge he said clear margins...now there was a millileter spot in a lung no clue which one it is now 1/2 in there is "activity" as the doc said that showed up on the CAT scan. He will be consulting with other doctors he told Ron 6 mo to a year...Ron has no problems right now breathing, no coughing no symptoms. I'm confused. Slow growing he said another CAT scan in 8 weeks for his head and neck to see what's happening there. He said just cuz he feels so good and is eating again it's gonna be shitty news...


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
#148718 - 04/24/12 10:25 PM Re: Now we wait... [Re: SUEZ]  
Joined: Mar 2011
Posts: 1,002
tamvonk Offline
"OCF Kiwi Down Under"
tamvonk  Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,002
New Zealand
Oh no. My heart feels so sad to hear your news. It is shitty.
Are you able to phone the Oncologist who Ron saw. You need to discuss this with him so that you have a clear understanding of the process and all available options.
You say 'He will be consulting with other doctors". Push him to do this. Only then can you make an informed decision on whether or not to persue further treatment options.
Quality of life is important , I know.
I just wish you and Ron all the best. Never give up
Hugs and love to you both,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
#148724 - 04/24/12 11:44 PM Re: Now we wait... [Re: tamvonk]  
Joined: Nov 2009
Posts: 493
zengalib Offline
Platinum Member (300+ posts)
zengalib  Offline
Platinum Member (300+ posts)

Joined: Nov 2009
Posts: 493
NW Ohio
Oh, I feel so bad for the two of you. Where is Ron being treated? I am glad that he will be consulting with other doctors, maybe they will have some other ideas. Like Tammy said, never give up!


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
#148728 - 04/25/12 12:52 AM Re: Now we wait... [Re: zengalib]  
Joined: Oct 2011
Posts: 805
KP5 Offline
"Above & Beyond" Member (500+ posts)
KP5  Offline
"Above & Beyond" Member (500+ posts)

Joined: Oct 2011
Posts: 805
NY
So very sad to hear this. I agree that you should talk to the doc and get a second opinion just for peace of mind.
Please stay in touch with us and know that you will be in our prayers.
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
#148730 - 04/25/12 02:04 AM Re: Now we wait... [Re: KP5]  
Joined: Jun 2007
Posts: 9,628
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,628
PA
Sue, I am very sorry to hear your sad news. Poor guy!!!! Please get him to go for a second opinion at a cancer center. Dont just settle for the doc having meetings with others doctors. I know he can be a bit stubborn but its very important to get another opinion.

Good luck with everything!


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
#148732 - 04/25/12 04:37 AM Re: Now we wait... [Re: ChristineB]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
I agree with all the above... A millimeter? That's TINY!!!!!! It cold be excised. I would definitely be a second opinion. hugs!!! And don't give up!


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
#148748 - 04/25/12 01:22 PM Re: Now we wait... [Re: Cheryld]  
Joined: Jul 2010
Posts: 531
SUEZ Offline
"Above & Beyond" Member (500+ posts)
SUEZ  Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2010
Posts: 531
AURORA, OH
It's now a 1/2 in. He goes to the Cleveland Clinic. That's the best...there is the Seidman Cancer Center @ University Hospital. I think...Ron may have said no to surgery. I tried to talk to him bout it but he didn't want to talk. I am going to try and call the Doc and see if he can talk to me. He has apt in June with his ENT. And does anybody know what he means when he said there is "activity?"


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
#148752 - 04/25/12 06:45 PM Re: Now we wait... [Re: SUEZ]  
Joined: Jul 2011
Posts: 945
Maria Offline
"Above & Beyond" Member (500+ posts)
Maria  Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2011
Posts: 945
Ohio
Hi, Sue
I'm sorry to hear this - it's been such a long road for both of you. I suspect that 'activity' is shorthand for 'disease activity'.


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.
#148764 - 04/26/12 02:02 AM Re: Now we wait... [Re: Maria]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
Yes but that can nly be beter mined by a biopsy, nless it's a known area of concern - tell him YES is a good word where urgery is concerned. Also I thin you mentioned a while back that he still smoked could it be that he has some inflammation or infection in his chest?


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
#148772 - 04/26/12 02:49 PM Re: Now we wait... [Re: Cheryld]  
Joined: Jul 2010
Posts: 531
SUEZ Offline
"Above & Beyond" Member (500+ posts)
SUEZ  Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2010
Posts: 531
AURORA, OH
I don't have any answers yet. I'm just confused about this as you are. I have to find time here at work to try and call the doc office and see if he can tell me anything. I'll keep updated when I find out more info.


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
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