| Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | OP Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Update -- Second Review
Today John had his second review after 8 doses. The CT scan shows 27% growth compared to the baseline established at the inception of the trial. The MO told us not to worry as in real terms, the lesions have grown 2 mm in four months. With immunotherapy, it is also possible that the lesions will appear to have grown in size and then start to shrink. The reason for this is the inflamed cells around the lesions will make the lesions seem like they have grown. The human eye is not yet able to distinguish which are the cancer cells and which are the inflamed cells just by looking at the CT scan. To do that, the patient will probably have to have a biopsy but one wouldn't want a lung biopsy every two months because of the risks. The upshot is John will have another four doses and we may see some changes (or not) at the next review.
Our doctor believes that immunotherapy will likely become an accepted treatment, the question that needs to be answered is what kinds of cancer is it most effective for. She thinks that what is most amazing about this class of drugs is that there is so little or no side effects. I can see this as John is able to live a normal life except for the fact that his esophagus is so scarred from the radiation that he cannot swallow.
We are still feeling positive about the situation. Another patient whom we keep running into at the hospital has stomach cancer that has metastasized to the lungs. He was given a year to live. He is in the same trial as John and has had twelve infusions. His tumours have stopped growing.
My takeaway from today is not to give up. It really does seem like we are turning the corner in cancer treatment.
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Although a bit early to tell, it sounds like very good news! I'm glad the side effects have been pretty much nil.
Looking forward to the next report. It really sounds promising.
Best wishes for a successful outcome.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | Fingers crossed for majorly positive news the next review. For now... Yeah!! That they seem optimistic  hugs!
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
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Wow. That is such positive news. There seem to be more articles available recently on Immunotherapy too. It is becoming more mainstream. Well done you two. 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!
| | | | Joined: Jan 2013 Posts: 80 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2013 Posts: 80 | Gloria - Thank you for the update; I think of you and John often and am glad to hear things are progressing with little side effects. Such very nice news and positive outlook. I agree that the advances in cancer treatment seems to be making great strides and believe we'll see many more to come.
Take care, Nancy
Nancy Age 56 at diagnosis Neck Lymph node removed 11/2012 Tonsillectomy perfomed 12/2012 - identified as primary SCC Left Tonsil with Left Node involvement, DX 12/2012 RX started 1/29/2013, finished 3/23/2013; Daily IMRT (35 Sessions) Weekly Taxol/Carboplatin (6 weeks) PEG placed after week 4 (3/1/2013) PEG removed 6 1/2 months later (8/12/2013) | | | | Joined: Apr 2013 Posts: 76 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2013 Posts: 76 | Gloria- Thank you so much for updating us. Your news seems so very positive! "Turning the corner" is a really beautiful phrase to so many of us. My continued best wishes to you and your husband on this journey.
Best,
Mary
Mary Caregiver to husband, 60 Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+ Oct '12 Sub.Gland transfer Nov-Dec '12 IMRT x 33 + cisplatin x7 March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED) April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16 9/13: 33 rounds IMRT to lungs; carboplatinx7 CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC 30 rounds IMRT to left lung; treatment ended 5/29/14 Sept 2014--CT clear; December 2014 CT clear
| | | | 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 | Gloria,
Sounds positive. Toes and fingers crossed....
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: Nov 2013 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Nov 2013 Posts: 104 | Fingers crossed for you two!
Brian Stage IV TxN2aM0 HPV+ SCC 38 y.o. male 9/20/13 Sentinel Node Found 12/5/13 Start of 72Gy and 5 bags of Cisplatin 1/21/14 Treatment Ends 1/25/15 1 Yr clear
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | OP Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Thanks for all the encouragement. At times like these, one does need to keep hoping.
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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | OP Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Update
John has had 12 infusions of the trial drug and we met the oncologist for "the" review today. Unfortunately, while the lesions in the lungs have not grown much, there is a lymph node which has increased rather alarmingly in size in the last two months. The doctor concluded that the trial drug wasn't working and demitted John. Instead, he will now be getting chemo -- taxol and carboplatin -- to start in two weeks' time. This is, of course, not good news but being in a clinical trial is always a crap shoot. We asked the doctor but there are no other drug trials for head and neck patients at this point.
John has taken it quite well and I am glad about that. He has been having discussions with his therapist about the situation and I think the sessions have helped him understand what he is facing and how he can best deal with it.
If there are members of the forum out there who may be considering immunotherapy, please do not lose hope. There are patients here at our hospital who have had more infusions than John and who have had better outcomes. It is like the initial treatment of radiation and chemo -- it all depends on the individual.
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. | | |
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