#16950 01-24-2005 06:17 AM | Joined: Nov 2004 Posts: 90 Senior Member (75+ posts) |  Senior Member (75+ posts)
Joined: Nov 2004 Posts: 90 | Hi Tessa,
Welcome to this forum, I know you will find it extremely helpful. I am sort of new here too, but I'm the caregiver for my husband Ron who just finished radiation on this throat 2 months ago. These people gave you excellent advise on what to expect. Please don't be afraid, you will get through it, but it won't be a walk in the park. I just wanted to make one other suggestion to you...as you progress in your treatment, you may experience a lot more pain. Make sure to keep up on the pain meds, don't let them lapse. If that means setting your clock in the middle of the night to wake you for a pain pill, do it. That was one mistake we quickly learned regarding my husband. He would unknowlingly let the pain pill wear off in the middle of the night, and would wake up in a lot of pain. Then it would take awhile for the new pain pill to kick in. It was like he was on a "pain" roller coaster ride. Don't let that happen. You hang in there Tessa, and be comforted in knowing you aren't alone, there are a lot of wonderful, caring people on this site who have been through what you're going through. They have been a Godsend to me, and I'm the caregiver!
Shelley
Caregiver to husband, Ron. Throat cancer, Stage II. No Chemo or Surgery. Completed 35 Radiation Treatments in November 2004.
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#16951 01-24-2005 11:05 AM | Joined: Jan 2005 Posts: 3 Member | | OP Member
Joined: Jan 2005 Posts: 3 | Hi again! I am not receiving IMRT radiation. My treatments are in PA so much close to home than Sloan Kettering in NYC. I only wish I could have had my radiation in NYC but I feel confidant in my local doctor. Thank you all for your support and suggestions on my upcoming weeks of treatment. I hope I can get through it with the least amount of problems. I found the Biotene products, Thanks! Also found that lemon drop candies are helping with the saliva. Treatment #4 is complete as of today. Only 26 more to go. God Bless all of you!
Theresa
SCC of the right lateral tongue T(2); N(1); M(0) Surgery 12/6/04. Currently undergoing radiation since 1/19/05 for 6 weeks.
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#16952 01-25-2005 09:45 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 | Theresa,
I am sorry to hear of all the challenges you are facing right now. Welcome to the neighborhood, though! I went with the Ethyol for a while and developed an allergic reaction after about 3-4 weks of radiation. It got worse and worse until I stopped it. I heard that happens with a few people. If you are already experiencing dry mouth this early into the treatment, I would bet it is is more related to meds and dehydration. The Ethyol is claimed to protect the salivary glands and kidneys from effects of radiation and is used for this reason. It should not help you maintain saliva during treatment as much as help your salivary glands recover. Are you getting plenty of hydration. If by mouth or PEG tube, you should take your weight divided by two. This is the MINIMUM ounces of water a day. If not, make sure the lab tests are done regularly and check all your electrolytes and creatinine. I don't see if you are having chemo with your radiation but if you are, the creatinine is very important to monitor your kidney functions, especially with platinum based chemo agents.
Rinse your mouth often and drink as much as you possibly can. Dehydration will only compound your side effects.
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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#16953 01-25-2005 04:41 PM | Joined: Jan 2005 Posts: 1 Member | | Member
Joined: Jan 2005 Posts: 1 | Tessa:
One of the hard things about this experience is that your friends, who do care about you, are in shock, too, particularly when it's the "strong one" who's been hit.
Give them time, and if possible, give them something specific they can do for you. Those of us on the team as supporters want to participate, but it's often hard to know what to do or what to say when someone you care about is suffering. You might consider telling your callers that you just need to talk (or don't want to talk right now if that's the case); you can ask for company or e-mails or even jokes or links to net places which can make you smile.
Tonight, I picked up a prescription for my cancer survivor friend and just dropped it off at her house. She didn't want company, so I didn't stay, but I needed to DO something and was very grateful to have had the opportunity of making my caring concrete. I'll bet your friends are the same.
Hang in there!
Carol | | |
#16954 01-27-2005 05:45 PM | Joined: Oct 2004 Posts: 2 Member | | Member
Joined: Oct 2004 Posts: 2 | Hi Tessa
I'm sure you can see by the responses that you are not alone in this. Many of us have been through many of the same UGLY situations that you are going through. You will have to try some of them and see what works for you. For myself, the dry mouth didn't start for a few months after my radiation treatment ended. After 2 years I didn't have to walk around with a water bottle. I still have to use oral gel at night but overall doing GREAT! I am 6 1/2 years post SCCA right tongue with hemiglossectomy/ neck disection/chemo /brachy therapy/ radiation . I recently had to undergo 40 HBO2 treatments which worked wonderfully. Please stay strong, live strong, and feel free to ask questions. Take care JOHN VOLPE | | |
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