| Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jan 2009 Posts: 253 | Patty: I have read several articles on "truly" individual treatment plans. I believe it their goal.
Sandy
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0. Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09. OCF member/supporter
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | personally i don't think it matters a damn what all the papers and articles say.Facts and figures give you an overview of recurrence and survival rates,the bottom line is it only matters if it happens to you.Rob had SCC.At the time of diagnosis he was given a 90% chance of surviving 10 years based on the information available,ie examination,scans and pathology and histology.He had 67 lymph nodes removed which showed no sign of disease.His scans were clear for spread outside of the diseased area.7 months later after surgery and radiotherapy he was dead.His scans showed invasion of the lungs,and his recurrance was described as the most aggressive the surgeon had seen,and yet they had no indication that this was how his disease would progress.I had many online buddies whos origonal diagnosis was much worse than Robs and they are still here living full lives with no problems,one in particular who was being treated for a recurrence after 9 years out.He is now back at work,and fit and well again.Why?
I have come to the conclusion its a lottery,Rob thought it was genetic as all the males in his family including his father had developed cancer in their 50's but none of them had the same cancer.My sister in law lost her mother to ovarian cancer ,her father to oral cancer and bowel cancer,and her sister to breast cancer age 42,she herself has been treated for carcinoma in situ of the cervix since she was 20 and has recently had a hysterectomy because the staging moved up to three,she is 47.
Oral cancer survival rates are always quoted poorly because of ignorance,lack of information,late diagnosis,and lack of research and publicity funding....the cinderella of cancers.Being proactive in your treatment is a great thing,but time spent trawling the internet for reasons why is not the best way of moving forward and onward and hopefully away from your diease.Sqeezing every last moment you have on this earth living your life to the full is.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Liz is right for a individual patient 90% cure rate does not mean a damn thing if you happen to belong to the 10%. As far as individual treatment plans go.. if you take a step back you see that what is currently done it is fairly standard, despite all the cool ideas/hype.... just look at our signature lines. Eventually we will be there that genetic test will help to optimize treatment. For example could/should you use Erbitux etc. For the sake of argument lets assume we can already do these tests.. where do all the new individualized drugs come from? I concede that some of the drugs may be old stuff.... but there just are not that many. The quoted paper (OCF) is perhaps not that basic. This reflects how intricate the issue really is. There are many things going on..... and even if you understand all or most of this (and there is more) it will not really help you because the treatment variations are fairly minor. M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Sandy, I am with your train of thought. Some of this I understand and others I just can't get thru my thick skull. I'm like Lit tler Denny Dumb Dumb, LOL I just shake my head and smile a DUH smile.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Sandy
Sorry, I thought you wanted more technical infomation when I posted those links. I used to specialize in doing plain english translations of medical terms decades ago so I forget how daunting they appear at first. For example the opening quote of the ocogene article [quote]Tumors often possess cytogenetically different clones that arise from the initial transformed cell through secondary or tertiary genetic alterations. This heterogeneity contributes to differences in clinical behavior and responses to treatment of tumors of the same diagnostic type. Apart from the initial clone and subclones, tumors can also contain progenitor cancer cells, all of which constitute a spectrum of cells with different genetic alterations and states of differentiation. These populations can differ in sensitivity to chemotherapy, radiotherapy, and other treatments, making clinical management difficult. For these reasons, the initiating steps in the development of cancer are of considerable clinical importance and are a priority in the development of rational cancer treatment[/quote]can be summarized as: Cancer tumors constantly change their cells' genetic makeup in series of steps that makes it hard to predict how even the same types of cancer will react to treatment. Until we know those various steps, we will not have a "rational" cancer treatment. Now I love the medical admission that the current treatment of cut, burn and poison for all cancers is not rational but it is all we have. My understanding is that a cancer is "aggressive" when it is resistant to treatment, reoccurs or spreads. Prostate cancer is usually not aggressive and males can live to 90 with it with no ill effects as is is slow growing. Watch and wait is an accepted therapy for such cancers. When I asked back in 2007 what if I just waited and again in 2009, all three doctors said I would die within a year of a very painful death. That is an aggressive cancer. Unfortunately most if not all head and neck cancers are aggressive. Simply the nature of the beast. Some cancers react wonderfully to treatment, like the type Lance Armstrong had - relatively easy to "cure". Not so much for ours. Various medical articles have described oral cancer as "insidious", "catastrophic", etc due to the major life impairments that even successful treatments cannot avoid since it involves our head and neck which cannot be amputated. We all cope with the new normal as best we can. 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | You have me laughing again Charm LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I sure remember when cookey and rob were going thru the troture. I used to jus sit sn wonder ow they could handle it. I felt so bad for them.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I have my 16 lb sledge and am about to fine tune this damn wireless keyboard and mouse. I type bad enough, but when I know I hit the keys ans they don't show, it,s get even time. Must be time to use the wired one and flatten this scrap.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Jim,
Check your unit that is plugged into the computer...sometimes it gets interference when its in a bad place and causes the keyboard to keep from registering. Also..possibly you need new batteries??
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | The ability to separate the really aggressive disease from the regular versions is discussed in this recent OCF news posting. If you subscribe to the OCF RSS news feed you would be getting this story automatically. For those of you that don t here it is http://oralcancernews.org/wp/2009/05/new-diagnostic-advance-seen-for-head-throat-cancer-2/
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
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