| | Joined: Mar 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | OP  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 64 | Several times during April, (oral cancer awareness month), OCF will be putting out national press releases about he disease, and various issues related to it like HPV, and more. But I would like to start out by talking about early discovery in the first release due out on April 10th, but not in the conventional sense. I want Americans to know that those of us who are lucky enough to survive our ordeals, (and are grateful to do so) have lives that have many negatives that impact us as a result of the morbidity of our treatments, even after survival. Over the years I have watched people who as a survivor who lost their tongue, now no longer be able to go back to work as a teacher where talking was essential to their life long profession, have a cascade of negative events result. Loss of income a year later when the savings have been consumed, cascaded into a loss of their home, and there were even more difficult challenges after that, including the too often recurrence. Even the dental issues and expenses that go with trying to keep our teeth can break the bank or at least be the straw on the camels back that causes hardship. There are many more quality of life issues that impact oral cancer survivors as a result of the morbidity associated with their treatments. We are so not like breast cancer survivors in so many ways. That does not mean I think their journey is any less noble, but it is indeed different when you reach survivorship. I am asking as many of you as possible to communicate in writing some of the difficulties that you find in survivorship to use in this first press release. You can remain anonymous if you prefer, or be mentioned in the article. We need people to understand why poor lifestyle choices such as smoking, need to be avoided. We need to illustrate why a very early stage discovery (which happen not often enough) can make the difference not only between survival and leaving this mortal existence, but in what peoples AND FAMILIES lives are like after this disease and the associated battle with it are done. NED, is never the end for us, there is always the next challenge. Americans need to hear about us, so that they do not become one of us. Please help us out with your stories. They could be posted on this thread, or tomorrow I will post an email address for John Pohl a writer that we work with to help put these stories together into a press release that will make Americans think.
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.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Thank you so much, Brian! I've sent your post to my son for him to consider sending in his story. An email address for John Pohl would be really great to facilitate getting the stories in quickly. OC impacts the lives of survivors and families in so many different areas during and after treatment. Unlike the breast cancer survivor, when reaching the NED stage you can't just go out and get a new bra, stick some boobies in and you are good to go.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 64 |
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.
| | | | | 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 | Just like people receiving rads for oral cancer, breast cancer survivors also face a lifetime of complications extending beyond what oral cancer survivors face. In addition to all our rad issues, breast cancer survivors also experience brachial plexopathy which is like our neck problems in the whole body from nerve damage to the main brachial plexus nerve bundle caused by rads.
In addition, anyone receiving rads to the upper chest and above with doses above 45 Gy are also in the high risk pool for lifelong radiation induced fibrosis issues including thoracic paraplegia. The lymphedema issues alone are way beyond anything oral cancer survivors face.
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
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 64 | bringing this to the front
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.
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | Do we just write to John Pohl with our thoughts/stories?
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 64 | Please feel free to comment directly to john. He will be doing the first draft of the release.
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.
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | FYI for everyone.
I had a couple of conversations with John. He's a great guy, very intelligent and supportive of what cancer survivors have been through. He asked lots of good questions and more importantly he's a good and empathetic listener.
I recommend that anyone with a few minutes to spare drop him a line. The experience is worthwhile.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | |
| Forums23 Topics18,235 Posts197,106 Members13,292 | | Most Online1,788
Jan 23rd, 2025 | | |
|
