#7339 03-28-2006 03:32 PM | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OP  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 66 | OCF is undertaking a new project. I hope that it will be of use to patients coming down the road behind us. It is a book, a daily journal, and place to collect receipts, and other related bits and pieces that are part of the process of going through treatment. It is designed to be a resource book, in binder form, for those that are newly diagnosed. One part of it is a 120-day log. A page for each day. That portion is a place to keep track of meds taken, caloric intake, weight, symptoms or problems that appear, and other significant information that will allow patients to spot trends, ensure that meds are taken, and nutrition is kept up to par, and more. There will also be sections on what questions to ask at different stages of the treatment path, notes from doctor
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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#7340 03-28-2006 03:56 PM | Joined: Jan 2004 Posts: 316 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2004 Posts: 316 | Brian, I think that is a great idea, and would have been so useful when I began this journey, especially here in OZ where there isn't a great deal of information available. I'll put my thinking cap on  Cheers! Tizz 
End of Radiation - the "Ides of March" 2004 :-)
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#7341 03-28-2006 04:48 PM | Joined: Jan 2006 Posts: 107 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2006 Posts: 107 | cool, count me in; in any way that I can help.
lenny | | |
#7342 03-28-2006 04:52 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2002 Posts: 1,140 Likes: 1 | Sounds much like the book I organized for myself and I cannot tell you how valuable that was. I will help in any way that I can. | | |
#7343 03-28-2006 05:50 PM | Joined: Nov 2005 Posts: 306 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2005 Posts: 306 | Brian - Fabulous idea. Well done. I would like to see good, clear, simple info on ports, pic lines and peg tubes. These were some of the first decisions I had to make and I felt very poorly prepared to make them. Problems with attached appliances happen often its tough to know the routines from the emergencies. I'll help in any way I can. Tom
SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
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#7344 03-28-2006 06:04 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 | WONDERFUL idea! There's so much to keep track of with the diagnosis and treatment of this particular form of cancer. And so little time to learn about it all as you are trying to make decisions and stay on top of your treatment.
Despite all the care I took to research things and ask questions, I have some (hindsight is 20-20) wishes for things I should have been more concerned about and asked more questions about at the time (and I also kept one of those notebooks with a log, info. about insurance issues, meds, etc.).
With the collective wisdom of having been through it that we have accumulated here between all of us, this should be a really invaluable resource when it's done.
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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#7345 03-28-2006 06:16 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Please consider the following topics for the book:
1. How cancer affects our children.
2. Depression after treatment is over.
3. The emotional process of saying goodbye to our pre-cancer self and welcoming our "new normal".
4. There ARE silver linings within a diagnosis of cancer.
These are 4 subjects that hit me hardest and I wish I had known more about it at the time I was dealing with it.
Great idea Brian, I look forward to contributing.
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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#7346 03-28-2006 07:22 PM | Joined: Jun 2004 Posts: 155 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2004 Posts: 155 | AWESOME IDEA
I hope every public libray gets a copy and there should be a grant to do it/
our two cents
Radiation or NOT in early stage cancers ( yeah a subject we love to debate and the jury is still out.
Dental health issues. To have pre treatment extractions? Why and why not? The consequences? The after treatment issues with your teeth.
Pain Management
Some truth about painkillers 1) don't be afraid to ask for them and how to do it if they are not forth coming. 2) the side effects. I know there are many issues but we were most surprised by the constipation if it hadn't been for the info I found here we wouldn't have known cause the Doc's didn't tell us.
Have an Advocate. It seems like the book will be a great resource but the value of someone else to accompany you to appointments to fill in the blanks accurately is invaluable.
Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04
Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
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#7347 03-29-2006 12:33 AM | Joined: Oct 2005 Posts: 122 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Oct 2005 Posts: 122 | Great idea, Brian. I wish I had had one. While I am certain this is going to be designed (rightfully so) for later stage diagnosis, I would have appreciated knowing more about prognosis and treatment for early stages. While I may have not gone through all the steps, I didn't see ANY hopeful information out there. I was definitely prepared for the worst, but would have appreciated knowing about the "not so bad" outcomes as well.
Sincerely,
Lisa
SCC Tongue T1N0M0\Dx 3-10-03
Hemiglossectomy, alloderm graft, modified neck dissectomy 4-14-03
3 Year Survivor!
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#7348 03-29-2006 02:26 AM | Joined: Feb 2006 Posts: 136 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2006 Posts: 136 | There is a book similar to this already in print. I have a copy. It is called "We have walked in your shoes, a guide to living with oral, head and neck cancer". It is published by S.P.O.H.N.C. (Support for people with oral and head and neck cancer). It is a free publication that anyone can send for a copy. My copy was copywrited in 2006. You may want to look at it - to make sure you don't duplicate that book. Maybe make sure that you touch / go into detail on things it might have missed.
The table of contents seems to cover everything everyone has mentioned from symptoms and diagnosis, to after the diagnosis to treatment options to side effects, it includes personal calendars and records keeping pages, looking forward after the treatments, coping with fear of recurrence and diet and nutrition.
Just thought I'd let you know in case you weren't aware of this book existing.
SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.
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