| Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | The MATH score piece was interesting. I have seen all sorts of studies attempting to shake prognostic markers out of the data, and wonder if we're not looking at the same thing in different ways. The presentation PowerPoint didn't, for example, show any other tumor characteristics - size, in particular.
The humidifier presentation, on the other hand, made me very pleased that I found OCF when I did, and knew to purchase a humidifier when my husband was undergoing therapy. Not as good as the fancy machine in the article, but very much better than nothing. Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | 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 | So Paul, since you mentioned the PEG� here we go, PEG WAR TIME!!!!
The latest data shows that some individuals definitely have to have a PEG tube, they just can't get through things without it. That's just a FACT. New data - patients that get them ahead of time, or patients that wait till their doctors decide that they have just lost too much body weight to go without it any longer, (usually about the end of week three of treatment) have the same outcomes as it related to survival, though obviously one group had greater weight loss during treatment. Apparently in the long view that weight loss did not impact ultimate outcome. Now the really new stuff, PEG users had slightly higher rates of dysphasia than no PEG users. Yup, I actually said it.
There are some caveats to that. The first is that IF the PEG user did swallowing exercises / physical throat therapy during PEG time, they had the same rate of dysphasia as non PEG users. Validating the "if you don't use it you can lose it" school of thought. So if you are going to have to PEG because of weight loss, then you better keep up with swallowing exercises, even though they are a pain in the rear (throat). My personal belief is that like me some people HAVE TO GO THE PEG ROUTE, but I am totally convinced they can offset any swallowing issues if they will just do the swallowing exercise protocol. Data now supports that. I personally think there is a big issue here, and that is patient compliance. I didn't want to do so many things during the worst parts of my treatment and this is one more MUST DO thing on the list. Staying after oral hygiene, hydration, swallowing exercises, taking meds on time, record keeping, and the list goes on� no just sleeping the days away during treatment if you want to avoid some QOL issues when it is all said and done.
It was well established that IMRT has the potential (in another study that was discussed in private conversations but not presented here) to reduce radiation to the nerves that control the swallowing reflex, reducing the post treatment dysphagia issues. Radiated nerves = swallowing issues regardless of PEG or no PEG. So tumor location and how the treatment radiation is mapped can cause dysphagia regardless of PEG or not.
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 | I am curious if vomiting exercises the swallow muscles. I know it's not the same from the perspective of pharyngeal parastolsis but it would make sense the process keeps some of the muscles working. And yes, I ask with a straight 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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Thanks for the info Brian, and Peg Wars lol. I can relate to the Must Do list, which I sometimes translate into Don't Do, and probably one of the worst patients as far as compliance goes, even if I know better, but for doing so, I pay for it. I still have my 2nd peg, for a number of reasons, more for a back-up as opposed to really needing it now, but did use it during recent surgery, treatment for additional nutrients, hydration. I'm still down about 70lbs from my pre-cancer weight, not going back either, but did gain back 45lbs at my current weight from my lowest, actually was more, but lost 25lbs since the summer unintentionally.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | My goodness Brian. The one I would least expect to light a match around the open gas can. :-)
Maybe it's been a long day, so I got no energy to join the scuffle. What about some sources to read on a rainy day? Also, is loss of speech the dysphasia you mention?
Many folks have swallow issues and do dilation and have various issues with food sticking and aspiration sort of stuff. It is pretty hard to recollect many posts describing loss of voice unless it is related to trach kinds of things.
If we are talking about loss of voice, personally, based on anecdotal reference, it is not much of a argument to add to the PEG discussion, in that the occurrence is so rare. Now, if the data shows that swallow issues are related to PEG, then let's hit the octagon!!!!!!!!!!
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Don, this is in the OCF News Feed from the symposium regarding effects of Chemoradiation and speech with oropharyngeal patients: http://oralcancernews.org/wp/effect...nd-speech-quality-of-hn-cancer-patients/
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | 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 | Uptown, I don't think that counts. Muscle memory which accounts for things like great aerobatic pilots or even riding a bicycle is different than an involuntary muscle reflex. The brain is part of it, both conscious and unconscious. The nerves and muscles get accused to a repeated movement and that allows you to do with subconsciously exactly the same way each time.
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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