#51097 01-24-2005 07:41 AM | Joined: Jan 2005 Posts: 1 Member | OP Member Joined: Jan 2005 Posts: 1 | 29 Nov 2004 my brother Mark died of adenoid cystic carcinoma; i.e. the salivary glands (parotid). He never smoked or used tobacco products & from all outwardly views, should never have contracted this KILLER. There had been delays in his diagnosis due to confusion that it was TMJ or another bone or muscle-related problem.By the time it was finally diagnosed as cancer during the summer of '03, he was forced to take Oxycontin for pain management even though treatment for the cancer itself had not even begun. Following surgery & radiation treatments, he tried to resume his normal life as best as he could--but X-rays showed that the disease had spread to his lungs. What followed was a series of months that "Hope & Optimism" could not change: a dramatic decline in health as the Iron Hand of Cancer tightened its grip. This having been said, I stress to anyone reading this that attention HAS to be paid to pains that one experiences & NOT brush them off as being trivial. Once pain comes, it signals that the cancer has MOST LIKELY already spread. That being accepted; accept this as well: that, in ALL LIKELIHOOD, there is little more that medicine as we know it in 2005 can do for you. I strongly believe that the chemotherapy (Iressa and then a standard Lung Cancer chemo regimen) he received hastened his death. I believe with ALL my heart that had he chosen to simply invest in a strong physical regimen (running...& whatever)that he could have held out longer. I believe that cancer does not fare as well in sunlight, with a diet strong in cancer fighting fruits & vegetables; but that cancer THRIVES when a patient is bedridden or sedentary. Remember, your life is YOURS & YOURS ALONE. That once you're gone you're family will have to deal with that FOREVER. If you've been given a terminal diagnosis, THINK HARD before further treatment is undergone. Maximize your time here--NONE of us will be back. Peace & the Grace of God be with us all--we don't know how much we need it until it's too late. 
George
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#51098 01-24-2005 07:53 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | George I'm so sorry that the treatment your brother received has left you so anti the medicial profession, many of us here owe our lives to good clinical practice. I wish you peace with your God, and hope that time will take the rough edges from your grief... 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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#51099 01-24-2005 09:21 AM | Joined: Feb 2004 Posts: 56 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Feb 2004 Posts: 56 | George,
I think I know all too well how you feel. It is easy to lose faith in the medical profession when we don't get the results expected. But everyone is different and it seems that everyone's cancer is different. What works for one does not always work for the other. At first I read these messages and gathered so much hope from others experiences. Over time I began to realize that what was true for others, isn't necessarily true in my father's case. Life isn't always fair, but while it lasts it can be beautiful. And to look back upon the memories and smile is one of life's greatest gifts. I hope in time your anger will fade and be replaced with something more constructive. I'm sure your brother would not want you to live with such resentment associated with him. I hope you can find the peace and calm you so deserve after dealing with this bitch of a disease.
Vickie M | | |
#51100 01-24-2005 11:26 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | George,
I'm sorry to hear what your brother went through, and what it has meant to your family. I also agree with you that pain signals should not be ignored -- however, I would not want people to assume that pain is automatically an indication that the cancer has spread to a terminal state. I was also a non-smoker and experienced around-the-clock pain in the months leading up to my diagnosis, but my tumor turned out to be Stage II and it had not spread to surrounding lymph nodes. It was treated with surgery and radiation, and it has not returned in almost 16 years.
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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#51101 01-24-2005 11:46 AM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: Dec 2003 Posts: 528 | Dear George
How sad I am to read your post and feel the grief and anger which you are experiencing. It is tragic that your brother was not diagnosed earlier and that you believe he didn't receive the best of care from the medical profession. He was obviously dearly loved by you and for that he was fortunate. He will always travel with you in your heart.
Love and light from Helen
RHTonsil SCC Stage IV tx completed May 03
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#51102 01-24-2005 12:44 PM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2004 Posts: 417 | My prayers are with you. You will never fill that void created by your brother's passing. But God's grace will see you through this mourning period.
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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#51103 01-24-2005 09:05 PM | Joined: Jan 2005 Posts: 156 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Jan 2005 Posts: 156 | george. iam feeling your grief, life is a bitch take care, may your dear brother rest in peace. maz | | |
#51104 01-26-2005 07:00 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 | George,
I am truly sorry to hear of your brother's passing and how rough his last months after diagnosis were. You are right in that early detection is the best defense for most cancers. I agree with you that once the cancer is so far advanced, compromising the body by chemo/radiation, etc., probably doesn't help the body to fight the disease at that point.
Sometimes, it just doesn't make any sense, does it? Now that cancer has become the #1 killer of all people in this country 85 and under, you would think we would know more about it. Even as advanced as we are in the medical arena, so much is just hit and miss. Unfortunately, once it is too late, we can only guess what would have worked, had we done something different.
I took care of my mother 24 x 7 for almost a year, thinking I could direct her care and keep her around longer. In many ways, her 4 week "death sentence" as I call it, stretched out to 9 months or so. As I look back at it, was her quality of life worth what she had to endure? I left it totally up to her and told her that whatever her wishes were, I would be her warrior, I would be her comforter. I battled doctors, insurance companies, etc., as long as she wanted to. In the end, as I look back, I gave her everything she wanted at that stage of her life. It sounds like you, too, were there for Mark in any way he wanted.
Do not lose hope or faith on mankind, medicine and life over your brother's suffering. When we lose someone so dear to us, we tend to let our mind wander towards the what ifs of life. Had we just done this different or that different, it would have changed the outcome. There is only so much we can do and stuff just happens, for whatever reason. Some say it is God's will but I do not believe God wills someone to die or suffer. He merely promises us in this broken world that He will be by our side and carry us when we need it. It is His promise of the eternal life without pain and suffering after this life that we should all look forward to.
I pray He will comfort you and provide you with peace all the days of your life. Your brother was so blessed to have your love in his life.
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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#51105 01-26-2005 11:45 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Dear George Please accept our sincere condolences. Your anguish over the passing of your brother is so Raw I can feel your heartbreak. I wish it had turned out differently for you .
May Your God Go 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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#51106 02-06-2005 10:47 PM | Joined: Jan 2004 Posts: 14 Member | Member Joined: Jan 2004 Posts: 14 | George, I am so sorry that you and your family have gone through this. I wish it had turned out differently. However, I too must stress that pain does not necessarily mean it has gone too far, lest this discourage someone who also has had pain. I too had a good deal of pain with my SCC in the month before I ever saw a doctor, much less started treatment. Foolish me, I figured what it was and wanted my family to get through the holidays before "finding out". It turned out to be stage II, no metastasis and not in the lymph nodes. Although we are all "under surveillance" my doctor believes it is gone now. So take hope, any of you who felt pain with this thing. Again, George, I am so sorry....may you find peace and comfort.
Squamous Cell Carcinoma, floor of mouth. T2 N0 M0. Diagnosed January 2004. Partial glossectomy, right neck dissection, removal of floor of mouth, gum, bottom teeth, flap from forearm, skin grafts.
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