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Introduce yourself
01/23/18 05:09 AM
Hi there. I'm 6 months past the end of chemo & am really bottoming out emotionally. This forum was recommended by someone with Friend for Life, with whom I spoke today. The fatigue & mental fogginess are quite challenging at this point. I'm finding it helpful to communic...
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7 Views · 0 Comments
General Board
01/21/18 05:51 AM
I always enjoyed talking with Jo. Sorry to hear she's no longer with us........
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495 Views · 5 Comments
After Treatment Issues - immediate post treatment
01/19/18 09:21 PM
Bryan, Im very sorry to contradict your Biotene advice. Biotene products have been drastically changed in the last few years. They have removed the parts of the formulas that were there to help with dry mouth, etc. Its pretty rare to find any of the original Biotene products ...
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952 Views · 4 Comments
Medications, Treatment, Procedures
01/19/18 05:10 PM
You're completely right. None of this seems like an exact science. Her current treatment plan doesn't sound too off from the recommended CRT protocol. Perhaps they have their own statistics why they believe 2 chemo doses would be enough. I have read that there's plans to have tri...
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152 Views · 8 Comments
After Treatment Issues - immediate post treatment
01/19/18 05:04 PM
Hi Stef....So glad things are going good for you. I had those feelings in my throat after radiation for tonsil cancer. I used Biotene products, toothpaste, rinse, and oral spray, along with drinking loads of water. The Biotene really helped me. You can find it at most drug st...
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952 Views · 4 Comments
Introduce yourself
01/19/18 04:47 PM
Hey...it's great to here your story of faith and blessings. I too was a pastor. I was in youth ministry for 15 years. Your attitude is so "on". I look forward to seeing your input. Be Blessed as you reach out to others!...
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173 Views · 2 Comments
Medications, Treatment, Procedures
01/19/18 04:43 PM
No need to apologize! We all are here to help each other with our shared knowledge. You just never know what different facilities, doctors, countries will go by with medical guidelines. They could be using brand new unreleased data or the physician and treatment facility cou...
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152 Views · 8 Comments
Medications, Treatment, Procedures
01/19/18 02:37 PM
Thank you for your response Christine. I apologize for asking too many technical questions on a forum that's more oriented for support rather than medical guidance, I realize most people here are just normal patients or caregivers with no medical background. After more research t...
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152 Views · 8 Comments
Medications, Treatment, Procedures
01/19/18 02:07 PM
I wrote you a long reply last night but my computer had some kind of glitch and I lost the whole thing. Im sorry but I cant remember exactly what I had written. All I can remember is its pretty common for patients who are getting the 3 big bag method of chemo to not get the th...
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152 Views · 8 Comments
Medications, Treatment, Procedures
01/19/18 10:30 AM
I've found some guidelines mentioning 2-3 big doses of cisplatin http://www.saskcancer.ca/Oropharynx%20CPGs%2005-15. (mentioned on page 5) So perhaps this may not be so uncommon? Reading up on it there does seem to be lots of discussion about what the best way of treating oropha...
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152 Views · 8 Comments
Medications, Treatment, Procedures
01/19/18 01:47 AM
My husband got only two doses of Cisplatin because he developed deep vein thrombosis after the second dose, first in one leg and then in the other. His chemo doctor said she would not give him the third dose because he was in such bad shape. The neutrophil was so low that he cou...
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152 Views · 8 Comments
Medications, Treatment, Procedures
01/18/18 08:05 PM
Thank you for your response. It's as I suspected I'll definitely tell her to ask her oncologist about this. Sadly my mother is getting treated in Bosnia and the facilities here aren't nearly as well equipped as all the cancer centers in the USA. We may have no other choice in tr...
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152 Views · 8 Comments
Medications, Treatment, Procedures
01/18/18 07:33 PM
You are correct!!!... 2 doses of chemo is NOT standard in the US. Most patients will get cisplatin with their rads. Sometime Erbitux AKA Cetuximab is used instead. The best way in my opinion is to go with the smaller weekly doses. Most patients find its much easier to tolerat...
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152 Views · 8 Comments
Medications, Treatment, Procedures
01/18/18 05:43 PM
Hi everyone. My mom met with her oncologist today and they discussed her upcoming chemoradiation treatment and she had her mask done. The oncologist told her she will get 35 RAD sessions over the span of 7 weeks and will also be getting chemo in two doses starting from week 3 an...
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152 Views · 8 Comments
After Treatment Issues - immediate post treatment
01/18/18 04:45 PM
A few things to share: - had a swallow test via nasal endoscopy (not barium/X-ray) with the speech and swallowing therapist. We could visualize where things might get caught. My cancer was in the vallecula and the radiation fields were highest there. This is near the epiglottis...
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952 Views · 4 Comments
Eating, Speech, Swallowing, and Alternative Feeding
01/18/18 04:37 PM
This is a very well known exercise known as the Mendelssohn maneuver. Before I began my treatment, I was taught this exercise, among several others, at Stanford. This is why, as Christine B reinforces, it is so important to go to a hospital or program that focuses on head and ...
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648 Views · 1 Comments
Introduce yourself
01/18/18 01:43 PM
Tina thank you for your kind words. I don't wish to be rude but cancerous nodes can be a big predictor of progression in this disease and I have seen very few posters with an N3 diagnosis like my mom here which isn't exactly encouraging. I'm sorry that you had to go through this ...
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316 Views · 6 Comments
Introduce yourself
01/18/18 03:24 AM
Welcome to OCF, Tina! Its always great having fellow survivors join our ranks. Your post is helpful to others who are in treatment and are struggling. Thanks for sharing your experiences with our family ...
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173 Views · 2 Comments
Introduce yourself
01/18/18 12:22 AM
Hi...Prior to my cancer, I was a RN and pastor. I was diagnosed with stage 3 tongue cancer in 2014. While waiting a month for surgery, my cancer went from the left base of the tongue to the right. Yee haw!😁 I had bilateral neck dissection with a free arm flap and skin grafts ...
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173 Views · 2 Comments
Introduce yourself
01/17/18 11:50 PM
Hope you're doing well with your treatments! Things improve with time though, I must admit, the struggle can remain. Wishing you the best! I had base of the tongue cancer so I get where you're coming from. Am here if you need anything......
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798 Views · 4 Comments
Introduce yourself
01/17/18 11:30 PM
I can imagine how hard this is for you but don't lose hope..Our cases are quite similar except my nodes came back negative. I was left with the of my tongue. Do not read anymore statistics, etc., as they don't apply to everyone. I, too, had chemoradiation, and though it wasn't f...
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316 Views · 6 Comments
Introduce yourself
01/16/18 07:28 PM
Ah I see well I've already talked about this with my mom and my brother, to really track how she takes her meds and to report all symptoms to her oncologist as she goes through treatment. I'm so sorry that John did not make it. It's truly terrible what this disease does to peopl...
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316 Views · 6 Comments
Introduce yourself
01/16/18 05:30 PM
Anti-emetic meds are for nausea. Some people hold off taking it until they are actually vomiting. I have been told that that’snot the best way to go about it as once the vomiting starts, it is difficult to keep the meds in the patient and so they are ineffective. I think I u...
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316 Views · 6 Comments
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