| Joined: Jun 2015 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2015 Posts: 29 | My question is about chemo and clinical trials. My mom has endured two hemiglossectomies, radiation, and chemo in the span of 10 months. Sadly, my sweet mom has just found out this morning that her cancer is back for the third time in as many months (I guess it never really left). It's in the area of her tongue and throat that has been removed twice, and she now has an additional spot. This is just in 3 months since her surgery in July with clear margins and nodes.
We are told at this point that surgery is not an option this time because recovery from this surgery was already very complicated. Radiation is not an option for her either, because again, she's still healing from her first go round with radiation. Chemo was difficult for her, too. We have a meeting this week to talk about chemo options to extend life. I know it's not considered curable at this point, but I'm wondering whether anyone with a "recurrence" has had any luck with chemo alone in terms of pain management and control of tumor growth? What chemo regimen?
I am also wondering if someone like my mom-in her early 70s, advanced cancer resistant to treatment, tough but been through the wringer-would be a candidate for any clinical trials. I love her so much and would miss her horribly (as would the rest of her family), but I'm not afraid of her death (I know we all die). I just want her to have some good days ahead, and I'm terrified that may not be in the cards for her. Sorry for the desperate ramblings.
Mom (beautiful soul) 12/4/14 SCC L tongue (neg. biopsy 10/14); 1/8/15 hemiglossectomy/neck dissection: T3N1, extracapsular extnsn, PNI, pseudoglandular/spindle cell, margins not clr; 2/2/15 RT/carbo/taxol; 4/15/15 CT clr; 5/15 neuropathic/trigeminal pain/headaches; 6/15 recurrence flap margins/BOT; cancer encroaching skin 7/23/15 hemiglossectomy; clr margins & nodes 10/22/15 CT: nasopharyngeal tumor, jaw, and necrotic nodes; tumor under chin/corner of mouth 11/5/15 left cancer behind
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | You are such a clear thinker and so loving to your mother. She must be very proud of you. I don't know much about palliative chemo or clinical trials but others will have some idea. I hope there is something that will help her. I'm very disappointed that it came back and wish you both well. Your expression "been through the wringer" is so apt. I often think there's only so much a body can take and then something else is hurled at me but my gaps in between have been prolonged and I just wish that had been the case for your mum.
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | 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 | Im so sorry your mother is going thru this again.
There are some promising trials that have been discussed on the forum. Take a look at Brian's posts to get the specifics. Hopefully one of the trials would be an option for your mom.
Best wishes with everything. 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: Jun 2015 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2015 Posts: 29 | Thank you, Alpaca and Christine. Always comforting to hear from you. I was hoping for a larger gap, too. But here we are. Based on her really ugly CT scan, it appears she now has a nasopharyngeal tumor, as well as a spot adjacent to her jaw and two necrotic nodes-one on the left and one on the right. She will probably begin the palliative chemo assuming she can tolerate it. We'll continue to look for possible trials, but the rapid progression of this cancer is frightening. Of course we're hoping for for more quality time and a little symptom relief once the chemo starts, but given the gravity of this, we've been asking her friends and family to send her letters or cards sharing nice memories they've had with her, so that we can read them with her and then eventually share them with her grandkids. Not giving up. Just trying to be prepared. I hope you are doing well.
Mom (beautiful soul) 12/4/14 SCC L tongue (neg. biopsy 10/14); 1/8/15 hemiglossectomy/neck dissection: T3N1, extracapsular extnsn, PNI, pseudoglandular/spindle cell, margins not clr; 2/2/15 RT/carbo/taxol; 4/15/15 CT clr; 5/15 neuropathic/trigeminal pain/headaches; 6/15 recurrence flap margins/BOT; cancer encroaching skin 7/23/15 hemiglossectomy; clr margins & nodes 10/22/15 CT: nasopharyngeal tumor, jaw, and necrotic nodes; tumor under chin/corner of mouth 11/5/15 left cancer behind
| | | | Joined: Jun 2015 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2015 Posts: 29 | Sorry to report that my sweet mom died last Thursday. It was very hard to watch her transition from life to death over the course of two days, but we made the most of our time together. The night before she grew unresponsive, we talked about life, joyful times, favorite memories, religion, and then early the next morning she began struggling to breathe. She was never responsive again after that, and she died the next night. During those two days, she had visits from close friends who told her goodbye, we read letters from family and friends, read poems, played music, and she was surrounded by family and next to her dog when she took her last breath and left her broken body. We will miss her terribly. We learned so much from her. She was hopeful until the very end of her life. I'll be thinking about you all and wishing you good health. I think the science is coming around, and we'll have some better options soon.
Mom (beautiful soul) 12/4/14 SCC L tongue (neg. biopsy 10/14); 1/8/15 hemiglossectomy/neck dissection: T3N1, extracapsular extnsn, PNI, pseudoglandular/spindle cell, margins not clr; 2/2/15 RT/carbo/taxol; 4/15/15 CT clr; 5/15 neuropathic/trigeminal pain/headaches; 6/15 recurrence flap margins/BOT; cancer encroaching skin 7/23/15 hemiglossectomy; clr margins & nodes 10/22/15 CT: nasopharyngeal tumor, jaw, and necrotic nodes; tumor under chin/corner of mouth 11/5/15 left cancer behind
| | | | 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 | Im very sorry for your loss. May she rest in peace, free from pain and sickness.
You were a wonderful caregiver. In time the memories of happier, healthier times will bring you comfort. 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: Apr 2015 Posts: 91 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2015 Posts: 91 | I am sorry to hear about your mother. Sounds like you are a great daughter. Denise
Biopsy tongue 3/24/15 Diagnosis SCC tongue/floor of mouth Partial glossectomy, resection and right neck dissection done 4/22/15 T2aN0M0 05/01/2015-no further treatment indicated at this time, monthly check ups for two years
| | | | 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 | I am so sorry you lost your mother. My heartfelt condolences to you and your circle of family and friends.
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: 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 | So sorry. You are indeed a Wonderful Daughter. 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: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | My condolences. You painted such a lovely picture of your mother that she will stay in my mind. Much love.
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Please accept my deepest condolences. This is a terrible disease.
I am happy that you all got to say your "goodbyes" in such a beautiful way. I'm sorry that she was unresponsive, but perhaps she was hearing it all along, enjoying the love in her dreams.
Take care of you, now.
Love in OCF, Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Jun 2015 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2015 Posts: 29 | Thank you so much for your kind words and thoughts. I continue to think about you and check in from time to time. My Google searches are not as frantic anymore, but I want very much to spread the word about this dreadful disease. You are right-it's just terrible.
I think she heard us. I hope it was said and heard already many times before, but I think she heard us at the end. My mom was trying to see the gifts in her suffering-a chance to reflect and reach out and for us to prepare. It's hard for me to see it that way right now. But she took every opportunity to survive, and we made the most of things. That's a comfort-that she did everything she could. Thank you again. You guys are awesome.
Mom (beautiful soul) 12/4/14 SCC L tongue (neg. biopsy 10/14); 1/8/15 hemiglossectomy/neck dissection: T3N1, extracapsular extnsn, PNI, pseudoglandular/spindle cell, margins not clr; 2/2/15 RT/carbo/taxol; 4/15/15 CT clr; 5/15 neuropathic/trigeminal pain/headaches; 6/15 recurrence flap margins/BOT; cancer encroaching skin 7/23/15 hemiglossectomy; clr margins & nodes 10/22/15 CT: nasopharyngeal tumor, jaw, and necrotic nodes; tumor under chin/corner of mouth 11/5/15 left cancer behind
| | | | Joined: Mar 2014 Posts: 79 "OCF across the pond" Supporting Member (50+ posts) | "OCF across the pond" Supporting Member (50+ posts) Joined: Mar 2014 Posts: 79 | So sorry for your loss , may your mum be in a happy place RIP xx
Di 47 none smoker / drinker
T4 SCC left tonsil 1 Cistplatin,30 RAD finished treatment on 4/12/2013 Trismus First MRI scan appears clear TX NG tube 9 weeks acute vommiting, syringe driver 9weeks 2 month checks | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | I'm very sorry to hear about your Mom passing. She had family and friends near and made the transition with respect and dignity. I hope you find comfort knowing she is no longer suffering and in a better place now.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Jun 2015 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2015 Posts: 29 | Thank you, Don and Di. I know you're right. She's in a better place. I hope this holiday season is good for you both.
Mom (beautiful soul) 12/4/14 SCC L tongue (neg. biopsy 10/14); 1/8/15 hemiglossectomy/neck dissection: T3N1, extracapsular extnsn, PNI, pseudoglandular/spindle cell, margins not clr; 2/2/15 RT/carbo/taxol; 4/15/15 CT clr; 5/15 neuropathic/trigeminal pain/headaches; 6/15 recurrence flap margins/BOT; cancer encroaching skin 7/23/15 hemiglossectomy; clr margins & nodes 10/22/15 CT: nasopharyngeal tumor, jaw, and necrotic nodes; tumor under chin/corner of mouth 11/5/15 left cancer behind
| | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | My condolences on your loss. Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | Joined: Jun 2015 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2015 Posts: 29 | Thank you so much, Bob. And a late Happy Veterans Day to you.
Mom (beautiful soul) 12/4/14 SCC L tongue (neg. biopsy 10/14); 1/8/15 hemiglossectomy/neck dissection: T3N1, extracapsular extnsn, PNI, pseudoglandular/spindle cell, margins not clr; 2/2/15 RT/carbo/taxol; 4/15/15 CT clr; 5/15 neuropathic/trigeminal pain/headaches; 6/15 recurrence flap margins/BOT; cancer encroaching skin 7/23/15 hemiglossectomy; clr margins & nodes 10/22/15 CT: nasopharyngeal tumor, jaw, and necrotic nodes; tumor under chin/corner of mouth 11/5/15 left cancer behind
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