#37192 04-18-2004 12:00 PM | Joined: Mar 2004 Posts: 38 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Mar 2004 Posts: 38 | Hello,
I have heard alot about patient teams. Other than the doctors teams for surgery and reconstruction those are the only ones we've had. No one mentioned a nutrionist, dental team ect. Is it customary for a cancer patient to have a nutrionist and the rest? We are just winging it. I have this strange feeling that in the mad rush for sugery ( which was a great successs) the "team" we should have never appeared. Now I fear that getting a nutritionist ect is going to be a battle with the HMO.
Hope everyone is doing well....Annabel | | |
#37193 04-18-2004 02:58 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | We saw a nutritionist just one time and that was the day after Dan has his PEG tube put in. I had to find out from other sources about different nutrients and request from the nutritionist changes to be made. There hasn't been much help in that way. Fortunately, from another friend that Dan used to work with is how we found out about PEG tube nutrients with many more calories per can...and this has been covered by insurance...when the BoostPlus that the nutritionist first prescribed was not...go figure. Ask around and ask them many questions...it's how we got more things covered...not because they told us! Before radiation he was told to go to a dentist to check his teeth...no one they suggested or provided. We had to pay $400 for flouride trays the dentist said he needed, and he hasn't even been able to use them...they have gagged him bad everytime he tried. Another waste of money.
Hope this helps!
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#37194 04-18-2004 04:55 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi Annabel,
My "team" included a nutritionist that would come to see me during my radiation appointments about once a week. She gave me recipes, etc. My Otolaryncologist, reconstruction doc, radiation doc, dentist, etc. all know each other. Can you call any one of your doctors and see if they can give you better information?
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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#37195 04-19-2004 02:35 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Minnie, did you have physical therapy for the swelling on your face or was that someone else, I can't locate the posting on that, seems like someone mentioned a technique they learned from PT to reduce swelling, is there a certain type of PT I should look for or can any of them do it? Thanks so much!!!!!!!
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#37196 04-19-2004 04:42 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Carol-
I learned a type of lymph message from my PT a year ago that reduced the swelling while they worked on increasing mobility in my neck. Still had hardness in neck but no swelling. It takes only 2 minutes right before bed every evening and it helps redirect the fluids from the side of my neck disection to the other side to drain.
I just spent another 6 sessions last month as a tune-up and her deep message really softened up the neck area tissue! And it has stayed soft. Call around and ask if there is a pt with experience in lymph message techniques. Well worth the benefits! Good luck! - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#37197 04-19-2004 11:50 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hey Kris, thanks so much, that is what I needed to know, will start calling around tomorrow! Thanks Again, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#37198 04-19-2004 03:41 PM | 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 | Annabel,
I had a nutritionist connected with the radiation therapy and a nutritionist connected with the chemo. Before we started I met with a general medical oncologist who I saw/see for any issues such as thrush or regular blood tests and chemo, an otolaryngologist who ordered the PET/CT scans, the MRI's etc and found the primary tumor, the radiation oncologist that coordinated all of the radiation therapy, simulation, etc. I see the otolaryngologist every 6 weeks with a PET/CT every 90 days right now. Both nutrionists gave me handouts and recipes for chemo and radiation. I also had a social worker tied to chemo and one tied to radiation. I also had a dental surgeon who consulted with me prior to any therapy. The medical oncologist and his nurse coordinated everything and all appointments until 6 months past treatment and I make them all now. The medical oncologist just sent me to a physical therapist for the lymphedema (swelling) in the neck and loosening up the stiff neck muscles.
Ed
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
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#37199 04-20-2004 03:10 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Kris, just talked with a therapist that will evaluate me tomorrow for lymphedema massage therapy. I am all excited thinking maybe he can help the swelling on the left side of my face and help loosen up the neck muscles. Thanks Again, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#37200 04-20-2004 03:40 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Carol-
Good luck! It sure worked for me! I am scheduled to go in for tune-ups every six months. It certainly adds to the quality of life once you get past a day or two of pain from waking up some stiff muscles! Hang in there for it is worth it to have soft tissue again. - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#37201 04-20-2004 05:46 AM | 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 | Kris,
I started the massage last week and yesterday was a real workout all over the neck. I know what you mean about the pain that I am feeling since I got up today!
Ed
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
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