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Joined: Nov 2014
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Ok just had my 2nd scan after treatment. First one showed a few hot spots this one shows 4 more and the ones shown earlier have grown.

So what do I do now?

The Oncologist said to see a pulmonary specialist and have a needle or laparoscopic biopsy done. She said I will most likely chase this forever. I was down when I left.

The SU's were all low only one over 4.5.

The radiation Dr sounded more optimistic.

Do I move to a lung cancer forum? Any suggestions?


T4,N2,MO SCC of the BOT hpv+
Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015
PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015
Clear 4.9.2015 PET/CT H&N.
11mm low SUV nodule RUL on lung PET/CT
2nd PET 8.25.15 10+ numerous nodules bi later lungs
9.9.15 Lung biopsy SCC Org BOT
Avastin and Torisel clinical trial 11/15-3/16 MDA
Home 5/23/16 Pet scan 50% growth & +SUV
Opdivo 6/2016
Synthroid 100 mcr
Scan tumors shrinking
Teeth decay 9/2016
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
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Im very sorry about the latest check up results, Larry. I would suggest you may want to consider getting another opinion, preferably at a CCC. There are places to help with transportation and lodging. I will post the links for you a little later tonight.


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: Nov 2014
Posts: 73
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The oncologist is basically saying that it's unlikely to be anything but cancer. And it's a buy time treatment. My wife wants me to go to MDAnderson.
The Radiation Dr says we should stay home.
Physically I'm doing well. My feeding tube is out and I can eat most foods. No breads.
I greatly appreciate your help in anyway.


T4,N2,MO SCC of the BOT hpv+
Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015
PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015
Clear 4.9.2015 PET/CT H&N.
11mm low SUV nodule RUL on lung PET/CT
2nd PET 8.25.15 10+ numerous nodules bi later lungs
9.9.15 Lung biopsy SCC Org BOT
Avastin and Torisel clinical trial 11/15-3/16 MDA
Home 5/23/16 Pet scan 50% growth & +SUV
Opdivo 6/2016
Synthroid 100 mcr
Scan tumors shrinking
Teeth decay 9/2016
Joined: Oct 2012
Posts: 1,275
Likes: 7
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My husband was diagnosed with lung metastases half a year after the initial treatment ended two and a half years ago. Since then he has been in two clinical trials, six cycles of taxol and carboplatin, another 20 grays of radiation to deal with an enlarged node in the paratracheal area and is now on capecitabine. If you are at Anderson, there is the possibility of participating in clinical trials since they are at the forefront of cancer research. It is, of course, possible that these opportunities are also available closer to home. You will have to inquire and then decide. You might want to consider if you want to give it your all and try everything that is on offer. One never knows which drug will work and which will not. To do so, you will need an MO who is very knowledgeable and is willing to give you the chance to try. That may mean going to a facility for which research is a priority. Of course, that may mean commuting between the hospital and home and if it is realistically possible for you and your caregiver.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Nov 2014
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Thank you Gloria. I am very glad for your husband. I was feeling so well. This came as a shock. I see Pulmonary Dr Tues 9/8/15. Need to biopsy before we decide. Good news the BOT is gone as well as PEG. They told me no more radiation, just chemo. I will try to look t available trials. I don't feel like all Dr's are completely forthright with me. But trying to stay onto of what's all going on.
really appreciate your input.
Thanks,
Larry


T4,N2,MO SCC of the BOT hpv+
Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015
PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015
Clear 4.9.2015 PET/CT H&N.
11mm low SUV nodule RUL on lung PET/CT
2nd PET 8.25.15 10+ numerous nodules bi later lungs
9.9.15 Lung biopsy SCC Org BOT
Avastin and Torisel clinical trial 11/15-3/16 MDA
Home 5/23/16 Pet scan 50% growth & +SUV
Opdivo 6/2016
Synthroid 100 mcr
Scan tumors shrinking
Teeth decay 9/2016
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

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Larry, it wouldnt hurt to get a second opinion from MDAnderson. For me, it always raises a reg flag when a doctor doesnt advise to get a second opinion (especially when obtaining one from one of the country's top CCCs).

Hang in there and keep us posted.


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: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Larry, I don't think I can advise anything other then what was already said, and to let you know that everyone is pulling for you!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Nov 2014
Posts: 73
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Joined: Nov 2014
Posts: 73
Thank you everyone,

This has been a crazy ride. I thought I was cured. Radiation Dr said so in April, just one little hot spot on lung, don't worry it will go away.

New PET has Dr who read PET saying he is as certain, as he can be, it MET from BOT. (He even send me an email saying he's sorry.)

RAD Dr though doesn't tell me results for over a week - then says it's probably nothing, could be anything there are hundreds of decreases, could be 100 different kinds.

He wants to send me to his friend Pulmonary, putting him in charge, and doesn't want me to go anywhere else.

I don't want to see his friend I go back to ENT who says go see another Dr in same practice.

Takes a week to get in because the girl at front desk keeps arguing I am the other Dr's patient. They don't like you to change. I finally get to see the Dr I want. I am told he is direct. "Good I'll take direct."

We look at PET again, I point blank asked my new Dr is this "bad or super bad". He answers super bad and wants me to begin treatment the next day without biopsy, but my oncologist insisted on biopsy.

Had Biopsy yesterday. Hurt like hell. Hard to get at the Dr was very thorough. Hope to hear from Pulmonary Dr today. I just called his nurse and made sure she sends results to my ENT too.

I am tired of waiting. I am tired of hearing the condolences from Radiology Dr' and one's who say they have never seen anything like this.

My wife says then we need to go someplace who does.

I am thinking MDAnderson as it's about 7 hrs away and my ENT fellowshipped there. Called him he wants to wait for biopsy.

You know back when I finally got diagnosed by ENT Dr in Nov 2014 (I had gone undiagnosed from Mar 2014 - when I bled for 9 hours) saw a Dr who misdiagnosed, in late Oct I was feeling bad so wife did search and found a second opinion here. He quickly Dx me and aggressively biopsied growth, undifferentiated on both sides of neck + 4cm BOT. a few days after GASTRO went down same throat with a big hard plastic capped PEG and pulled scab off. I aspirated blood and lots of it. The X-rays show it all over my lungs. End up with pneumonia and collapsed lower lobe. Hospital stay 10 days.

Now these little nodules are scattered all over lungs. Could that be how it MET?

Has anyone looked at how the Clovis drug stock rocketed yesterday. Has anyone participated or know anything about the Tiger Trials? http://tigertrials.com

One more question. What is this called now? I was told not lung cancer but where it began - BOT. That is confusing to me.

You know this is a bitch to be stuck on this ride. They tell you get on cause if you stay here it's over. I would like to know where the ride is taking me.

Sorry for rant.

On another note a crazy criminal beat to sh_t was handcuffed to the bed across from me with a police officer in between. He was on the news, looked horrible. Told he shot at police officers in nearby Semmes. It certainly took my mind off my troubles.

Last edited by larry6905; 09-10-2015 08:31 AM.

T4,N2,MO SCC of the BOT hpv+
Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015
PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015
Clear 4.9.2015 PET/CT H&N.
11mm low SUV nodule RUL on lung PET/CT
2nd PET 8.25.15 10+ numerous nodules bi later lungs
9.9.15 Lung biopsy SCC Org BOT
Avastin and Torisel clinical trial 11/15-3/16 MDA
Home 5/23/16 Pet scan 50% growth & +SUV
Opdivo 6/2016
Synthroid 100 mcr
Scan tumors shrinking
Teeth decay 9/2016
Joined: Jul 2011
Posts: 945
"Above & Beyond" Member (500+ posts)
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Joined: Jul 2011
Posts: 945
Hi, Larry
It has certainly been a ride for you and your wife. I think that a trip to MDAnderson (or a remote second opinion if they offer that) is probably a good plan. I am not familiar with the trial you referenced, but their are a number of very exciting trials in progress, and you want doctors who are well up on them. Best wishes - we're pulling for you.
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.
Joined: Nov 2014
Posts: 73
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Nov 2014
Posts: 73
Today has been very productive. First yes the biopsy was squamous cell carcinoma from base of tongue.
I am going to MDAnderson. The pulmonary Dr and ENT are going over every test and pulling together records. They are making appt for me. I said I can go at anytime.
I feel better now like someone is trying to help me find curative care. Maybe a clinical trial. Save my life.
I appreciate that.
Thank you for all your advise it helped me very much. Sometimes all it takes is a little push in the right direction.
I told my wife I don't want her to feel she didn't do enough. She said she couldn't promise that unless we tried everything.
Now I have to get oil changed and pack, call my best friend who lives in Houston.
I so want to be hopeful.


T4,N2,MO SCC of the BOT hpv+
Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015
PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015
Clear 4.9.2015 PET/CT H&N.
11mm low SUV nodule RUL on lung PET/CT
2nd PET 8.25.15 10+ numerous nodules bi later lungs
9.9.15 Lung biopsy SCC Org BOT
Avastin and Torisel clinical trial 11/15-3/16 MDA
Home 5/23/16 Pet scan 50% growth & +SUV
Opdivo 6/2016
Synthroid 100 mcr
Scan tumors shrinking
Teeth decay 9/2016
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