| Joined: Jan 2013 Posts: 80 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2013 Posts: 80 | Gloria - I think of you and John often and wonder how you are doing? Hopefully John (and his doctors) are doing well managing any symptoms and/or pain, and that you both are finding strength and happiness one day at a time. Knowing you are North of me, you must be settling into Fall with leaves off trees and that cool (cold) air starting to move in - brrrrrr... I am not a winter person at all.
My best to you both, with prayers.
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: 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 | Hi Nancy,
I am so touched by your concern and kindness. John is going in for a CT scan of his abdomen, thorax and head and neck. These scans will tell us if the cancer has progressed and at what rate. We are scheduled to see the MO the week after for the results. John is not yet showing symptoms except for the fact that he can't walk for as long and as far as he used to. He did end up in ER one Sunday when he had a splitting headache (he never used to get headaches). The doctors there did a brain scan but nothing showed up. Then a week or so later, John had an attack of the hiccups which lasted for more than 24 hours. We were able to get in to see his GP who prescribed muscle relaxants and that solved the problem. When these things happen, I get scared because no one knows if it is cancer-related or not. Other than these episodes, we are truly taking it one day at a time and one problem at a time. We are lucky to have a very supportive GP and a competent home care nurse who visits once a week. Yesterday the case manager visited and set us up for palliative care. I particularly wanted that to be in place as I don't know when the pain will start and would like to know that help is there if I need it.
I come on the forum everyday because there are some members, like you and Jay Jeong, that I feel a connection to and would like to know how they are getting on. But being in the situation that I am, it is hard for me to participate in the discussions or to offer anyone any advice. I will, however, update when I can.
Thank you, Nancy, once again for being such a kind friend.
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 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | I'm glad you are getting things sorted out. There is always hope in my eyes. An australian man who was told he was terminal went home to live out the rest of his life with his wife. They said there was nothing more they could do for him. This was three or four years ago. His last check up he was NED. I am not sure how it came about but I do believe certain lifestyle changes, can support your health and immune system and prolong quality of life. I do hope for this for you and your husband. hugs and stay strong.
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | We pray for you and John every night Gloria. And not a day goes by that I don't wonder how things are with you, so please post now and then because your cheering section wants to hear from you!! Blessings, 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 | | | | 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 | Dear Cheryl and Kathy, thank you for your support.
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 | This morning we got the results of John's CT scans from last week. The head and neck area remains clear and there is no sign of tumour in his other organs. The lesions in the lungs, however, have grown to 1 cm and 1.5 cm. The doctors' conclusion is that the tumour is slow-growing. John is going back for another series of scans in two months' time. At that point, it is possible that there might be a clinical trial that he can participate in which is delivered by IV and so his inability to swallow will not be an issue. I guess we'll just keep soldiering on.
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: Jan 2013 Posts: 80 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2013 Posts: 80 | Gloria,
Thank you for taking the time to post John's update. That is good news of no other lesions and that the existing 2 are slow-growing and hopes of clinical trial in the future. It must be so exhausting (emotionally)for you both; I hope you are taking time for yourself and each other. Are you/he both working or keeping busy? Maybe a Fall trip to see some foliage?
I will keep you in my prayers.
Best, Nancy
Keeping in
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | I'm so glad they have an option... If there are only 2 can they not surgically remove them?
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: 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 | We asked, surgery is out of the question because the lesions will multiply eventually since the cancer cells have got into the bloodstream. The reality too is that there are four or five lesions according to the first scan but it is likely that only two are of a significant size for now.
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 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Thank you for the update Gloria. Sounds like a bit of a reprieve. At least there is not an immediate decision that has to be made. Try to love on each other a little! You remain in my thoughts and 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 | | |
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