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| Joined: Jan 2011 Posts: 8 Member | OP Member Joined: Jan 2011 Posts: 8 | Gosh I hope I'm posting this in the correct forum.  I am putting together a "care package" to be shipped to Seattle next week. My soon to be BIL is leaving on the 15th for treatment (Nuetron Therapy 5 weeks). We are reading the forums and gathering information. I'm putting together a list of items he will/may need while he is there. Any suggestions would be appreciated. I don't want him to get there, start treatment and need something that he does not have. He will not have a vehicle or support person for the first week of treatment. Thank you!
SIL and Brother of Jeff 04/11 Adenoid Cystic Carcinoma 4/11L Tonsilectomy malignant 5/11 Lymphoma Neutron Therapy ended 6/9/2011 | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | We seem to rarely (if ever) see a post related to Neutron Therapy, but apparently the the side-effects are similar to IMRT. According to this article, doctors use neutron therapy to treat only about 100 people a year with. About 80 percent of these patients have tumors of their major or minor salivary glands - There are only a few treatment facilities, one being U of W. http://www.radonc.washington.edu/clinical-cyclotron/neutron-therapy/
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | I don't know what would be useful for your BIL so cannot answer your question other than to consider things that give him a little bit of "home". If he likes reading, books and magazines; if he likes doing things with his hands, a model of some sort; movies, a portable DVD player. This is all dependent on what his living arrangements will be. Will he be responsible for feeding himself, can he plug in a computer for example?
May I suggest you talk to the people at the healthcare facility and ask for their advice. They may be able to put you in touch with other patients who have been through this procedure who may give you some insight. My Alex offered his services at our healthcare facility and has always said he was happy to anyone about to commence treatment about what to expect, tips and tricks etc.
Is your BIL going to be treated as an inpatient, going to be in a hotel, renting a house/apartment? This information may have an impact on what would be useful as some things would be dependent on what services he will be able to access and how much room he has.
I suspect the ability to stay in touch with loved ones would be high on the list as well as comfort foods (soft) and drinks to keep his hydration and nutrition up.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | | | Joined: Jan 2011 Posts: 8 Member | OP Member Joined: Jan 2011 Posts: 8 | Thank you both for your help. Jeff is on his way back home today from Seattle. He flew through treatment with little side effect. He had nausea and dry mouth. He used the Manuka Honey to reduce mouth sores. He started using it the morning of treatment day 1. No mouth sores. We are not sure if it was the honey or something else but it was worth the effort not to have the sores. He walked to treatment 1 mile4 days a week!! I am amazed at how well he did. Thank you again for all the input. I'm sure I'll be back on here for more input as the doctors told him this will come back.. this will be what ends your life.
SIL and Brother of Jeff 04/11 Adenoid Cystic Carcinoma 4/11L Tonsilectomy malignant 5/11 Lymphoma Neutron Therapy ended 6/9/2011 | | |
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