#6621 01-03-2006 11:49 AM | Joined: Jun 2005 Posts: 53 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jun 2005 Posts: 53 | Hi all. My sister, Reagan, underwent treatment for salivary cancer last year including surgery and radiation. I've posted here before and everyone was so wonderful with advice and support. She made it through the treatment and two weeks ago had an all-clear CT scan. Since then she's been throwing up (some blood), horrible back pain, and low grade fever. Finally yesterday it got so bad she went to Emergency where they did x-rays and another CT scan on her stomach. It showed multiple spots on her liver. The doctor told her he thought that maybe her salivary gland cancer had started with the liver cancer but it never was diagnosed. She has no insurance and I can't help but think they didn't run all the tests they would've on someone with insurance. Anyway, we're scheduled to get a referral tomorrow for an oncologist who treats liver cancer. I have no idea what to even expect now. But I guess I'll be saying goodby to this board and trying to find one that provides info on this other type of cancer. Thanks to all of you who've been so wonderful. You've got my admiration and respect and I hope that each and every one of you makes it through this horrible disease!
Robin
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#6622 01-03-2006 12:30 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Robin, I'm so sorry to hear about your sister. I didn't know salivary gland cancer could start in the liver and I do wonder why they didn't do a CT of the liver when they did their staging of the salivary gland cancer (I had one when they did the staging). I hate to think that when a hosptial takes someone with cancer who has no insurance that they would cut corners on things like that but you may be right.
Your sister is lucky to have you as a loving caretaker. Both my siblings are on the opposite coast, although I did get a visit from my brother this summer, and I wish they had been closer during all this.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#6623 01-03-2006 02:39 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Robin, we are all at risk for liver cancer due to the distant metastesis aspect of the disease. Some here have had treatment for the liver cancer issues so don't give up on us yet. Please keep us in the loop.
Please let Reagan know that we are keeping her in our thoughts and prayers.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#6624 01-03-2006 03:12 PM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Nov 2002 Posts: 274 | Robin,
The ER doctor can't make a statement like that. I had a liver metastases removed 5 weeks ago, but it was a single spot. What is multiple? The liver can regenerate and can be treated. I had Radio Frequency Ablation (RFA). Look it up on Google and be prepared to ask about it. Calm down and don't run from this site. I have had cancer everywhere and it has ALL been metastatic from the head and neck. I would see if you could get a PET/CT scan to rule out other areas of concern. Just so you know, my liver tumor, 3CM, appeared in a few months and did not predate the head and neck cancer.
Glenn | | |
#6625 01-04-2006 12:09 PM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2004 Posts: 417 | Good thoughts and prayers, to You and Reagan, from my family to yours
Darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#6626 01-04-2006 01:49 PM | Joined: Jun 2005 Posts: 53 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jun 2005 Posts: 53 | Hi guys! Thanks so much for the support and for the info, Glenn. I took my sister into the health agency that she has been being seen through. I guess I misunderstood - the report said they thought the liver cancer was metastisized from the saliva gland cancer and not the other way around. At any rate, thanks to this wonderful board, I knew enough to request a referral to a comprehensive cancer center. Wish we'd gone there at the start but things are so tough without insurance. They are supposed to call within 72 hours to set up an appointment. In the meantime, we got her some Percocet for the incredible pain she's in. Thanks again to all of you!
Robin
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#6627 01-09-2006 10:37 AM | Joined: Jun 2005 Posts: 53 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jun 2005 Posts: 53 | Just wanted to let you know we met with the oncologist at Rocky Mountain Cancer Center. My sister has continued to deteriorate and is in intense pain. He said the cancer is in several spots on her liver and on her spleen. He's offered her the option of chemo to possibly shrink the tumor but not cure the cancer. She has been pretty adamant against chemo so I asked for a referral to hospice. The doctor told us without treatment that she's looking at a matter of weeks or a couple of months. Having done a lot of research over the past week I wasn't in shock, but I'm still very, very sad.
Robin
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#6628 01-09-2006 11:46 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Robin,
I'm so very very sorry your sister's illness is at this point. This must be very ghard for you. It seems to me that the biggest thing you can do for her right now is to be sure she is not in unnecessary pain. Hospice people will know best how to control the pain but if there is any delay in getting her in a hospice somewhere, push whoever is giving her medications now for soemthing that is stronger. I realize complete pain management isn't always possible but it sounds like she's been shortchanged in thorough medical care already becuase she has no insurance, I hope that isn't happening again.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#6629 01-09-2006 12:53 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Robin
I am so sorry to hear this news . I know you and your family are in a lot of pain right now and wish there was a way for us to help.
You have been a great support for your sister, our thoughts are with you.
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#6630 01-23-2006 03:27 AM | Joined: Jun 2005 Posts: 53 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jun 2005 Posts: 53 | Thanks to all of you for the wonderful support you offer through this board. My dear sister passed away last night in hospice care.
Robin
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#6631 01-23-2006 06:27 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Robin,
I'm so sorry to hear the news. These past few months have certainly been an ordeal for her and for you -- I know you have tried very hard to see that she got the right level of attention and care.
You are in my thoughts and prayers.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#6632 01-23-2006 10:21 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Robin
No words from me will ever help fill the void left by your sister, but I want to say your sister must have been so proud of you. You gave unconditional support to all her decisions and allowed her to have control over her own destiny, no one ever could have done more..
May your God walk with you.
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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#6633 01-23-2006 11:13 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Robin, Your sister was blessed to have you in her life up to the end helping her get the care she needed. I'm so sorry it was such a difficult fight and that it ended this way. You are in my thoughts.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#6634 01-23-2006 11:54 AM | Joined: Jun 2005 Posts: 53 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jun 2005 Posts: 53 | Thank you all so much. Each and every one of you are in my prayers.
Hugs,
Robin
Robin
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#6635 01-23-2006 04:25 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Robin, You did all you could for Reagan, so please find ways to take the best care of yourself over these next months. And get help if you need to. I'm very sorry for your loss. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
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#6636 01-24-2006 09:40 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Robin, I am so sorry to hear about your sister, you are in my thoughts and prayers. 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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#6637 01-24-2006 01:50 PM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Aug 2004 Posts: 217 | All prayers are for you tonight, Robin. Tom and I can only echo the thoughts and love sent by others. I will add that the care you offered your sister will comfort you later. God is good.
Nicki
Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#6638 01-24-2006 02:17 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | My deepest sympathies in your loss of your sister. May your fond memories ease your grief.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#6639 01-25-2006 05:34 AM | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | Robin,
I'm so sorry to hear this news. You were such a wonderful sister and it was obvious how much you loved her. My thoughts and prayers are with you and your family.
Hugs,
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
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#6640 01-25-2006 07:26 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Dear Robin,
You have my condolences over the passing of your sister. I hope all the good memories you share with her will ease the pain you feel now.
All my best, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#6641 01-25-2006 05:20 PM | Joined: Sep 2004 Posts: 153 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Sep 2004 Posts: 153 | Dear Robin,
My heart reaches out to you. While your soul begins it's journey to healing, please know we are here to support you now, as before. Please contact me if you need a shoulder to cry on or even a laugh.
My thoughts are with you each day.
Tonya
Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
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#6642 01-26-2006 03:09 PM | Joined: Jun 2005 Posts: 53 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jun 2005 Posts: 53 | Thank you again - all of you. Everyone here was so wonderful in answering questions and even e-mailing private messages of support while we were going through this. My one wish now is that America will come up with some type of plan so that everyone in this country has access to good medical care. I'm not sure what the answer is as I know National Health has it's problems as well, but I've seen first hand how you don't have a very good chance in this country of beating a disease like cancer if you don't have insurance. I love my country but in my sister's case, I feel like she was failed by a bad system. Looking back, I'm fairly certain this cancer was in her liver back when she was going through radiation for the parotid gland cancer but the tests weren't run to discover it. Maybe it wouldn't have made a difference in her outcome, but it would have helped in the process - she would have qualified for disability and Medicaid (both of which denied her) and she could have possibly avoided the radiation treatments if there was no chance of a cure. Again, thank you all for your kind thoughts and e-mails. I just pray that a cure for cancer is found soon!
Robin
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