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My Mom's Battle/Recurrance #199228
10-10-2019 01:37 PM
10-10-2019 01:37 PM
Joined: Oct 2016
Posts: 284
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DanielleO Offline OP
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DanielleO  Offline OP
Gold Member (200+ posts)
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Joined: Oct 2016
Posts: 284
I don't even know where to start but I will try to make this as brief as possible...
My mom was 15 years cancer free (she is 71)...well not exactly. She has had many, many squamous cell skin cancers come up all over her body over the years and about 3 years ago when they were stretching her throat to help with her swallowing issues they biopsied some strange bacteria looking stuff in her throat that turned out to be verrucous carcinoma in her throat. Her doctor told us that it was too extensive to surgically remove so he opted to do a scraping every six months to control it. He told us to think of it as like she has failing kidneys and needs dialysis. So every 6 months she went in for a scraping out patient surgery and he removed the surface of the verrucous carcinoma. At the time of throat stretching my mom finally gave in to having a feeding tube put in as she could no longer swallow properly and she was very malnourished. She was also experiencing all the sporadic high and low blood pressure issues of baroreceptor failure from the radiation damage. Needless to say my poor mother has been through so much...
April 2019 - my mom was rushed to the ER because of what she called a tumor on her tongue that would not stop bleeding. She was taking baby aspirin and her blood pressure was sky rocketed and she kept applying gauze to the wound that would not stop bleeding. They finally got the bleeding under control and looked into her mouth and did not see anything of concern. Well we all thought and knew something was just not right (her breath was foul and she was very low on energy) but kind of just figured we would wait until her scheduled appointment in July for her routine scraping...Well the day came for her appointment and before they put her under my sister told the doctor to take a look and he was like "what the hell is that, that is cancer" she had a huge tumor in her throat. He basically put her under did the scraping and removed most of the tumor that he could and basically told her to get her affairs in order but that he may present her case to the tumor board to see if there are any other options. We demanded he present her case to the tumor board who after a few weeks finally got back to us and said that she is a candidate for more radiation and chemo since it has been 10 years since her first series. We immediately began making appointments, oncologist, radiologist, pain management and for a PET scan. (this whole process took several months in the meantime the cancer is growing rapidly in her throat). Her PET scan was clear no mets so it was a go to start chemo and radiation which began on September 16th.
Well she was not a good candidate for the chemo and ended up almost dead on September 29th as her sodium level was down to 102...she was rushed into ICU where she stayed for 6 days until they could bring her levels up. They agreed to stop the chemo as her poor body cannot tolerate it but she went back to her radiation treatments on 10/7. She is officially half way done with her radiation treatments and the tumor is showing signs of drastically shrinking and her radiologist is still optimistic. So anyways, I just wanted to put her story out there as I relied heavily upon OCF when my mom was first diagnosed and went through treatment. I'm certain there is nobody out there that has had the same experience but I wanted to share her story with everybody. Thanks for listening

~Danielle


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
Re: My Mom's Battle/Recurrance [Re: DanielleO] #199232
10-10-2019 07:22 PM
10-10-2019 07:22 PM
Joined: Jun 2019
Posts: 53
San Antonio, Texas
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Mokie Offline
Supporting Member (50+ posts)
Mokie  Offline
Supporting Member (50+ posts)
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Joined: Jun 2019
Posts: 53
San Antonio, Texas
I’m so sorry for all your mother has been through Danielle, but so happy that the radiation is working. We appreciate the detailed update on her as that’s how we stay in hope and keep fighting. Thank you so much and kudos to you for all you do for her. Please continue to keep us in the loop.


SSC Lt sublingual tongue; Age 62
Positive biopsy 20June2019
Staging done 2 Jul : Stage 1
Quit smoking 15 years ago; not a drinker; no HPV
Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up.
Partial Glossectomy 22Jul2019
Re: My Mom's Battle/Recurrance [Re: Mokie] #199656
01-03-2020 12:27 AM
01-03-2020 12:27 AM
Joined: Oct 2016
Posts: 284
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DanielleO Offline OP
Gold Member (200+ posts)
DanielleO  Offline OP
Gold Member (200+ posts)
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Joined: Oct 2016
Posts: 284
My heart is breaking...my mom is so sick. We believe the cancer is back. She is so weak and so tired and suffering tremendously...I don’t even know what to think or feel right now...just numb😢😢😢😢


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
Re: My Mom's Battle/Recurrance [Re: DanielleO] #199657
01-03-2020 12:41 AM
01-03-2020 12:41 AM
Joined: Jan 2020
Posts: 2
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moms baby girl Offline
Member
moms baby girl  Offline
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Joined: Jan 2020
Posts: 2
I'm so sorry Danielle! I hate this for you! And she has fought hard! So if it has recurred, is it time for hospice? Are you already using hospice? And forgive me if that is painful to talk about. I am new to this website and I am just trying to get a handle on all of this. I think the most important thing is to keep her comfortable and at peace. I hope you can get her there. I can tell that you are taking good care of her, so your face is a big source of comfort and peace, I'm sure. One day at a time, one minute at a time....whatever it takes!


moms baby girl
Re: My Mom's Battle/Recurrance [Re: moms baby girl] #199658
01-03-2020 07:26 AM
01-03-2020 07:26 AM
Joined: Oct 2016
Posts: 284
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DanielleO Offline OP
Gold Member (200+ posts)
DanielleO  Offline OP
Gold Member (200+ posts)
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Joined: Oct 2016
Posts: 284
She has a pain management appointment today and we are requesting Hospice. Thank you for your kind words. She has battled this beast for 20 years. She is so very tired and we need her to be at peace. I spoke at length with a close friend who is a hospice nurse last night and she gave me all the instructions...


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
Re: My Mom's Battle/Recurrance [Re: DanielleO] #199668
01-08-2020 09:00 PM
01-08-2020 09:00 PM
Joined: Jun 2019
Posts: 53
San Antonio, Texas
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Mokie Offline
Supporting Member (50+ posts)
Mokie  Offline
Supporting Member (50+ posts)
M

Joined: Jun 2019
Posts: 53
San Antonio, Texas
There are few words to say at this point that can ease your own anxiety and pain DanielleO, but just know that the strength you’ve shown in assisting with the decision making in her care has been the greatest gift you could have given her. That in itself is emotionally exhausting. Rest assured now that the Hospice Nurses will make sure she is comfortable and will meet her every need. Hugs to you and your Mom.


SSC Lt sublingual tongue; Age 62
Positive biopsy 20June2019
Staging done 2 Jul : Stage 1
Quit smoking 15 years ago; not a drinker; no HPV
Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up.
Partial Glossectomy 22Jul2019

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