| Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | OP "OCF Down Under" Gold Member (200+ posts) Joined: Oct 2011 Posts: 225 | My brother has been told that unless it can be demonstrated that there is less than a 1% risk of his experiencing a cerebral metatastic-related acute incapacitation he will not be allowed to return to work until 24 months post-treatment, in line with the improved prognosis at 24 months. The report from the neurosurgeon that his employer referred his scans, reports etc etc to, contains references backing up this position. Mention was made of BCL2+ and the reduced consequent prognosis of HPV 16 when it is present. Does anyone know what that is?
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good. | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | the first obvious question is why is a neurosurgeon involved? why don't they ask Simon's doctors or at least an oncology expert? In my area, BCL is short hand for B-cell (memory cells involved in regulating the immune system) but I am not sure if this is what it refers to here (wonderful thing about medicine - the same nomenclature means different things in different disciplines). BCL2 positivity was floated as a marker for prognosis in cervical cancer years ago but results were inconsistent, and as far as I know the idea just petered out. I am not sure what possible connection this would have with Simon unless his lab results indicated a BCL2 positivity and research into correlation between BCL and HPV has progressed into head and neck cancer. The first step would be to check the references that the neurosurgeon has provided to make sure he isn't applying results from cervical cancer studies to Simon's case. If he is, another expert could easily rebut such a conclusion. My only reading of any connection between BCL2+ as a marker for prognosis and HPV is in cervical cancer. For every experiment that found a correlation there was another that found none. Might I suggest you or Simon talk to his radiation oncologist and get them to look at the report give his view and possibly explain the significance of the neurosurgeons conclusions? sorry to be so vague - I am really not following the thinking here ...
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | I'v seen BCL marked as a negative factor for H&N cancer, but in the following article it looks like he has sailed past the scariest part of the survival curve. The other articles I've seen (but can't put my hand on) indicated that if something bad were going happen, it would have happened already. The interaction between the various factors is complicated, to say the least. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2640025/I would be surprised if they have enough data to support the 2 year mark for this small subset of patients in a meaningful (statistically speaking) way. My guess is that they are using the more general 2 year benchmark.
Last edited by Maria; 12-14-2012 09:46 AM.
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | BCL could be "Basal Cell Layer" also, which is below the Squamous cells.
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: 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 | Things sure are different in different countries! Best wishes with this!!! 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: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Is this related to Income Protection Insurance through his employer�s Insurance Company?
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | OP "OCF Down Under" Gold Member (200+ posts) Joined: Oct 2011 Posts: 225 | It's not to do with insurance. The neurosurgeon is involved because my brother is an airline pilot and their medical people have tried to ascertain the risk of metastase-related seizure whilst flying 400 people around. They want this risk to be less than 1%. They would be happy if it can be demonstrated in other studies rather than the ones cited. They have ALL his MO RO and ENT scans and reports but are asking for guarantees that may be can't be given. I don't have the references cited by the neuropsurgeon but will get them today so thanks for the leads. If anyone can suggest anything else I'd be grateful.
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good. | | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | OP "OCF Down Under" Gold Member (200+ posts) Joined: Oct 2011 Posts: 225 | Maria , that is so helpful. Where in that study does it say that he is past the high risk period? I think they are using the 2 year mark, but they're not wanting a less than 1% chance of arecuurance but a less than 1% chance of a seizure. After a week at work (I'm a high school teacher) I reckon my risk of a seizure would be way passed that! When I get info from the report I post some of the details and the studies.
Last edited by samkl; 12-14-2012 04:25 PM.
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good. | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | I hope everything works out so your brother can return to work.
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | I work at a software company and my probably of a seizure has GOT to be higher than 1%, too. I'll try to get more details on the timing issue for you.
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.
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