#70244 02-21-2008 03:18 PM | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OP  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,916 Likes: 63 | There is a new forum for eating, speech, and nutrition issues. You can begin to post there now, but remember that this stuff has been discussed here since 2002, and it is a good idea to search all the forums for answers that you may be looking for since this has been repeatedly discussed over the years
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: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 |
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | Joined: Sep 2007 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2007 Posts: 148 | way cool. I think everyone needs a little fun sometimes. And this is a way that we can share our sillier happier moments such as eating things we used to take for granted. Thanks Brian. Brenda
49 years young 9/2007 Squamous Cell Carcinoma 33 rad treatments. One year later, 9/17/2008 50 years old through the Grace of God. last check up all clear. Living life as it comes to me.
| | | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,916 Likes: 63 | I hope that it is not just a place to chit chat about this, but a forum that will concentrate all the posts related to the serious issues that this cancer creates for people in these areas in one easy to find them place. Everybody HAD to have an adjunctive therapies forum last year, we paid to alter the forums software, and it is hardly posted in at all. So let's see how this goes....
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: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Brian,
I think I get it. My mom has had many diffiulties in all three areas, this is where I would tell someone that from her experience with all her radiation tx's she has now been diagnosed with malnutrition, even though her current weight is perfect for her frame. Since she can't eat properly, it is causing the pain to persist...?
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | Joined: Sep 2007 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2007 Posts: 148 | Donna,
My nutrionalist says my BMI is perfect for my frame but she is concerned that I still dropped three pounds. i eat as much and as often as I can but she said that since I have to drink so much water with each bite that I wasn't getting the nutrion she thinks I need. My mom suggested that I drink an ensure or boost with my meals instead of water. I haven't tried it yet I will tomorrow though. Think that would help your mom? just wondering.Brenda
49 years young 9/2007 Squamous Cell Carcinoma 33 rad treatments. One year later, 9/17/2008 50 years old through the Grace of God. last check up all clear. Living life as it comes to me.
| | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Hi,
Thanks. She does drink the Ensure with Boost-vanilla. Go for the boost, I believe it has about 100 calories more per bottle. Mom's RO wrote her a prescription for it to save her money--he ordered for 6/day --she never can drink that much as she is now eating as well, abuot 6 mini meals a day.
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Brian, Thank you SO much for that new forum. I think there is definitely a need for this, there are many people who come here facing serious long term issues (as well as the short term issues most people face) with these things. As someone with severe dysphagia and who still can't teach a 50 minute class without my voice dying (which is pretty frustrating when you are someone who loved the classroom and worked as a teacher--I now teach online but it's not the same), these issues are huge for me. And I've learned quite a bit along the way too which I hope will help others.
There was one thread in "after treatment issues" when I was talking with a new poster who was using a bougie (as I am trying to learn to do) to prevent strictures. I don't think it was copied in there. If I find it for you can we move it?
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"
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | I found the thread in "After Treatment Issues". It is called "Has anyone had choking problems post tx?" and was begun in January of this year.
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"
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | I thought the request for this new forum was supposed to be for just recipes and foods we can eat and when we can eat them. If we put all the peg, dyphasia, speech etc. problems here, what will be on the 'After treatment Issues' besides turkey neck. Maybe I'm wrong, but I thought the idea was to get what we can eat, with recipes into one forum so it was seperated from the PEG, can't eat issues, thus making it an easy reference tool without the need to plough through all the other problems when looking for food. I was hoping this would turn into the OCF Cookbook section.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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