Posted By: HorseGirl Here we are again... - 10-26-2015 03:18 PM
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.
Posted By: Alpaca Re: Here we are again... - 10-27-2015 02:11 AM
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.
Posted By: ChristineB Re: Here we are again... - 10-27-2015 06:05 PM
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.
Posted By: HorseGirl Re: Here we are again... - 10-29-2015 09:03 PM
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.
Posted By: HorseGirl Re: Here we are again... - 11-09-2015 07:37 AM
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.
Posted By: ChristineB Re: Here we are again... - 11-09-2015 11:57 AM
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.
Posted By: Neicy Re: Here we are again... - 11-10-2015 03:00 AM
I am sorry to hear about your mother. Sounds like you are a great daughter. Denise
Posted By: Uptown Re: Here we are again... - 11-10-2015 05:11 AM
I am so sorry you lost your mother. My heartfelt condolences to you and your circle of family and friends.
Posted By: tamvonk Re: Here we are again... - 11-10-2015 07:39 AM
So sorry. You are indeed a Wonderful Daughter.
Tammy
Posted By: Alpaca Re: Here we are again... - 11-12-2015 03:30 AM
My condolences. You painted such a lovely picture of your mother that she will stay in my mind. Much love.
Posted By: Kerri Re: Here we are again... - 11-12-2015 05:40 AM
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
Posted By: HorseGirl Re: Here we are again... - 11-13-2015 03:49 PM
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.
Posted By: Di66 Re: Here we are again... - 11-13-2015 08:54 PM
So sorry for your loss , may your mum be in a happy place RIP xx
Posted By: donfoo Re: Here we are again... - 11-17-2015 08:16 AM
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.
Posted By: HorseGirl Re: Here we are again... - 11-22-2015 04:55 AM
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.

Posted By: Bob Whyte Re: Here we are again... - 11-23-2015 02:54 PM
My condolences on your loss. Semper-Fi Bob
Posted By: HorseGirl Re: Here we are again... - 11-24-2015 04:44 AM
Thank you so much, Bob. And a late Happy Veterans Day to you.
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