#33576 07-28-2004 08:13 AM | Joined: Feb 2004 Posts: 56 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Feb 2004 Posts: 56 | Hello All,
Just wanted to vent a little. Went to oncologist yesterday to get results of new CT. In the same area as before there is a new growth. Dr. said he does not know what it is. We see specialist next week. Will read x-rays and probably do a scope. Will probably order a biopsy, and then what? My father has not had anything, anything by mouth in over a year. Underwent Chemo, Radiation, and HBO, apparently all to no avail. I would read this website and come back with so much hope, and try to pass it on to him. But now what? He said last night that he doesn't want to go through all that again. And who can blame him? He's no longer living, just existing. Imagine if you can, eating 3 meals by tube. Mouth so dry, but you can't even swallow a sip of water. All he can do, is spray a small amount of water in mouth. I don't know what to do or say anymore. He's scared, I'm scared. I just want time to break down, but there is no time. Thanks for listening.
VickieM | | |
#33577 07-28-2004 08:38 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Vickie
Vent all you like thats what we are here for, I wish we had a magic wand to wave when it all takes a step back, so Vickie do what you can when you can... no one can do anymore.. prayers to you both..
Sunshine...love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#33578 07-28-2004 08:42 AM | Joined: Apr 2004 Posts: 156 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 156 | Vickie,
You and your father have my good prayers and wishes.
Sabrina | | |
#33579 07-28-2004 09:40 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Vickie, I don't have adequate words to comfort you, but please know I am praying for both you and your Dad...Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#33580 07-28-2004 11:01 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Vickie, Sorry to hear your news, but remember, until they do the tests, you don't know it is really cancer. Meanwhile, I'll pray for your father, you, and the rest of your family. Hopefully, it won't be cancer and everything will be alright. Also, venting here is one of the major benefits of this site. Vent away.
Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#33581 07-28-2004 11:43 AM | 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 | Vickie,
I am sorry to hear your news and it sounds like both of you are just worn out from it all. Not knowing your father's circumstances, I just wish there was something they could do to help ease the pain in his throat at least. It seems while we go through this, we get caught in this vicious circle. We need nourishment and especially water to keep the body going in the right direction. The throat (and mouth) gets so dry that it hurts to swallow. It hurst so bad we can't swallow anything and it just continues in this way. I know it sounds easy but water at least down the throat helps and the hydration helps and then some pain will diminish and at least a liquid diet is tolerable. Without some type of swallowing, it just gets worse and the throat muscles stop working correctly for swallowing.
I also hope there was no sign of anything questionable before the did the HBO treatments. Surely, the docs know that.
Try to at least get a few minutes away from it all for yourself. I will be praying for both of you and for guidance for the medical team to find the best course possible for you father.
Ed
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
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#33582 07-28-2004 02:57 PM | Joined: Oct 2003 Posts: 52 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Oct 2003 Posts: 52 | Vicki,
Has your father tried drinking Aloe Vera.
Marcy was only using her feeding tube toward the end and then someone had her try drinking aloe vera, it was like a miracle for her. For awhile she was able to get a few things down and it soothed her throat.
Bless you,
Michelle
Michelle, sister to Marcy
Dx January 03, partial glossectomy/selective neck dissection T2N1MO/recurrence June 03, radiation and chemo/recurrence Dec. 03 mets to spine and base of skull//palliative care//lost her April 10th 2004 Age of 32
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#33583 07-28-2004 03:43 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi Vicki,
I feel so bad for your father after reading your post. I remember having moments of fear a few weeks after radiation that I would never be able to eat again. It scared me alot. I wish I had some advice for his eating but I don't.
I hope there is not a new tumor and that you report back to us in a few weeks with some good news.
Just to give another opinion to offset Eds comment on the HBO Treatment. I asked my doctors numerous times if there was any risk to having the HBO treatments and they all assured me that there are NO studies that show the extra oxygen "feeds" cancer and gives you a recurrence. I also asked these same questions to the people on this board. The way I ended up looking at it was that if the cancer was there then it was going to eventually come out regardless of HBO treatment or not.
Keep us posted and vent here anytime you need to.
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#33584 07-28-2004 07:48 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Just so we are clear, it is my understanding that Hyperbaric Oxygen (HBO) treatments are NOT to treat cancer. Instead they are an attempt to relieve treatment side effects.
Vicky, I feel your pain (and your fathers) but I still work a 9 hour day, raise 3 children, sing in the choir, volunteer for too much stuff. I have eating challenges, pains and aches, I exist and I live. If you can get out of bed you are better off than many many people.
Take care
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#33585 07-28-2004 07:49 PM | 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 | Oops, I am now asking, "did I actually say that out loud?" I was more asking if there is any connection with HBO and known cancer cells. I have heard both and am still confused as to whether the HBO treatments affect active cancer just as I am still confused about ultrasound and active cancer. Anybody have any concrete answers to either?
Ed
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
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