Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
Joined: Jun 2014
Posts: 86
ak123 Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jun 2014
Posts: 86
On June 2nd, Brandon saw a ball that appeared on his neck. We took him to the hospital thinking it was an infection. He then met with his surgeon on June 4th and his surgeon recommended a fine needle biposy. The fine needle biposy was done and cancer has returned again!!!

We met with the Chemo doctor yesterday and he said: The cancer returned on the same side (left) but not exactly the same spot. Its in the lymph nodes but growing outside of the lymph nodes. It is not resectable at this point. I would suggest clinical trial. We have a phase 1 clincial trial using Immunotherapy. THe standard of care would be chemotherapy a combination of three drugs- carboplatinum (you had one of those before) 5 Flouriclse and cetixcumab. I have one clinical trial using the standard care using these 3 combinations with immunotherapy but not everyone will get the immunotherapy (it is 50/50) as it is a blind sided study.

I then asked him about the radiation.. his response was: he already had radiation but the complications is much higher. in the neck you have coretied atery and you can have a coretered neck blow out.

He said at this point when you have cancer coming back at the head and neck area that is not resectable technically its not curable. but we can treat to try to slow it down but it is not curable. We did discuss this at the tumor board and we discussed that we can not re-resect. "i have never seen something this young." I don't see anything outside the neck area.

My brother then asked what is the cure rate and the doctor responded "when you have local relapse and we can do surgery like we did the first time that is about 20 to 30% cure rate. Now that failed and its not resectable the cure rate is less than 5%."

We asked the chemo doctor "why cant we do radiation" his response was "the problem is he is not going to be able to deliver a high dose because this area was treated with radiation before and to be honest with you your tumor grew right after we did the chemo and radiation so the radiation did not work that well"

Trial 1- chemo with immunotherapy or chemo without immunotherapy. you may or may not get the immunotherapy.
Trial 2- 2 drug immunotherapy.

He thinks both trials are very equivalent but said "your case is very unique, because we did the chemo and radiation and thats the best treatment we had and we did not succeed" "immunotherapy is a diff approach to your cancer. If im your place i would do the immunotherapy. its very promising we were seeing very good results in lung cancer."

If i didnt have a clinical trial i would have you go with chemotherapy a combination of three drugs- carboplatinum, 5 Flouriclse and cetixcumab.

Its about 2 weeks to do the Phase 1- immunotherapy clinical trial. The tumor is still local, but it is direct invasion, it could spread through the blood stream thats when it goes to other organs but we dont see any signs of that. I feel like immunotherapy would be your best chance.

We asked the doctor "in the tumor board why did they say they cant re-resect?" his response was "because it is invading the floor of the neck, your muscles of the neck. he can not get clean margins and if you cant get clean margins, if you cant get clean margin and remove all cancer then surgery is not helpful"

I asked him, if he was your son would you wait 2 weeks for the immunotherapy? HIs response was "i would do a clincal trial. If you dont want a trial- i can treat you tomorrow. 2 weeks wouldnt change the outcome. Its better to make a right decision than to rush."

this is the study that he thinks is better:

https://clinicaltrials.gov/ct2/show/NCT02262741?term=medi4736&spons=medimmune&state1=NA%3AUS%3AMI&rank=3

https://clinicaltrials.gov/ct2/show...ecr=Open&rank=1&show_locs=Y#locn

Im so sorry for the novel! I just need help. I am going to write what the radiation doctor said in the next post.


22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
Joined: Jun 2014
Posts: 86
ak123 Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jun 2014
Posts: 86
I asked him: What can you do for him?? I heard that chemo just softens up the tumor. People have done radiation more than once. If he wasnt targeted on the left neck then why cant you do the radiation on the left?

this is what our radiation doctor said: so the whole area was treated about 6 weeks of radiation and his tumor grew despite of that and this means his tumor was resitent to the radiation.

I told him i thought the left was from a far and not targeted and he said "it was treated".

We can give 3 or 4 more weeks of radiation but you are talking about a tumor that survived 5-6 weeks of treatment already. whenever we add more radiation there are no more tissues and the neck gets affected, one im most concerned about is crotted artery. Artery can rupture and cause bleeding.

I then asked what about brachytherapy. His response "it is a way of giving radiation just around where we put the needle but in this case it is a diffused area. it is sitting next to the croetted artery." we know this tumor is resistent to radiation. I don't think radiation will help you at this point. I recommend the clinical trials.

i then asked what about "proton radiation" his response "proton radiation is a type of radiation that can deliver radiation to very specific areas and in this case as i mentioned before treating this area is not a big issue, its treating microscopic cells thats the issue. there is definitely microscopic cells."

Me: WHat about intraoperative radiation? Drs response "intraoperative radiation is when you open the tumor up and give a very high dose radiation to just that area that the tumor was sitting on. In his case the problem is the tumor is sitting on the croetted artery." Too much radiation on croetted artery is not good.

At this point there is no one standard care for this situation.


22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
Well, this is just awful news. I am so sorry.
Personally, I would be wanting to get into an Immunotherapy trial.
I'm presuming that you have read Brian Hills posts re Immunotherapy Trials in the General Board section?
Thinking of you and Brandon.
Tammy

Last edited by tamvonk; 06-12-2015 01:24 AM.

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

Joined: Jul 2012
Posts: 3,267
Likes: 1
Ak123, I left you private a message. This was pretty much my scenario also. The cancer was out of the lymph nodes, basically free roaming, after several treatments, and surgeries. I mentioned the last curative treatment I had was in 2013/14, a neck dissection to remove the cancer along with resecting a section of the common, internal and external carotid artery, and IORT during surgery. Then I had 5 weeks of Proton Therapy with Carboplatin. I pretty much had this same treatment a year earlier, besides the prior radiation, surgeries, and chemo before that, Not all doctors can or will do this, and have bern turned down for certain treatments along my travels the past 5 years. You have to find that experienced doctor to see if it's possible to do curative treatment, maybe it's not, if your brother wants, otherwise all others are going to say the same thing, which is doing palliative treatment with chemo/immune therapy, which is an option also. Some use it to shrink the tumors to see if further surgery, radiation can be done in the future.

There are risks. To have the carotid artery removed they do a Temporary Balloon Occlusion, TBO, and a Cervical Angiography, which have risks too, to see if you're a candidate, and can function with one carotid artery. I did not have a vein graft as cancer was on the artery, and needed more radiation. Even with the resection, there was still risk of carotid blow out at the stubs, 17%, from further radiation, but as discussed with my doctor, it was worth the risk since cancer had a 70% chance of coming back, and with my prior 7 (see Mets), it was most likely. If needed, I can give you the names of some doctors.

I just had my 3rd follow-up scan last week, and again showed no sign of cancer, which is the longest time span, 13 months, I had without a recurrence,

Good luck, and best wishes.


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: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
AK123, I'm sorry that you and Brandon are going through this again. It is extremely hard to be making these decisions. My husband was in a phase 1 immunotherapy trial last year. At the time, it was monotherapy, meaning he was given only the trial drug. We were told by our MO that she had patients on the drug who did show tumour reduction. So, it is a possibility that you might want to consider.


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: Jun 2014
Posts: 86
ak123 Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jun 2014
Posts: 86
Gloria- did the immunotherapy help your husband?? I see that your husband stopped immunotherapy 7 months later.


22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
Joined: Apr 2014
Posts: 236
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Apr 2014
Posts: 236
AK123

Please Please Please

This is a very serious Prognosis

I tried to get my mother to see a doctor who would do the surgery on the Caroited Artery but she was to scared to do it.
But look what happened to my mother . The cancer was on her caroited and it caused a blow out. It took her life fairly quick.
Don't waste time . Get to a surgeon who will get that cancer off that Artery.
Paul B knows the names of some Great Doctors. Take it and run. If you don't then chances are very grim.
Heidi.


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Jun 2014
Posts: 86
ak123 Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jun 2014
Posts: 86
I'm so sorry about your mom. Can you tell
Me name of doctor, Hospital where the doctor wojld have done the surgery on your mom. Time is of the essence right now! Please help!


22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
Ak123, my husband was demitted from the trial because of a swollen lymph node in the paratrachial area. He then received chemo (taxol and carboplatin) and is now in a second clinical trial. His metastasis are in the lungs and so his case is different from Brandon's. In palliative situations, it may be more realistic to look to stabilizing the tumours. That is buying time; who knows new treatments may come along at some point.


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

Joined: Jul 2012
Posts: 3,267
Likes: 1
Ak123, I left you the names of several doctors background, location and contact numbers in pm. I hope this helps.


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






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