#15751 06-14-2004 03:54 PM | Joined: Jun 2004 Posts: 106 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Jun 2004 Posts: 106 | Hi, everybody
I am new to this, both posting messages and cancer. I discovered a swollen thing under my chin last february, and now have had my left tonsil and all lymph nodes on the left side under my chin removed, and just finished 7 weeks of radiation. And I feel awful. I know a lot of you have had it worse, and this won't last for ever, but right now I can't even eat yoghurt smoothies. How much weight loss is normal?
I had made a decision to be brave & cheerful, but I think I lost it.
Leena
scc right tonsil T1N1M0, right tonsillectomy + modified neck dissection 3/04, radiation IMRT both sides X33 ended 6/04.
Also had renal cell carcinoma, left kidney removed 11/04
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#15752 06-14-2004 04:10 PM | Joined: May 2004 Posts: 34 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: May 2004 Posts: 34 | Hi Leena - welcome to the board - you will find lots of very supportive people here. My sister Cathy thought she had a canker sore when she went to the dentist in February - well you can guess the rest of the story. Cathy weighed only a 100 pounds when she had her surgery - once she started radiation we decided a PEG tube was the way to go - she went through a really bad couple of weeks in mid May but seems to be bouncing back. I don't know if there is a 'normal' weight loss figure - from what I've been reading here it seems to depend on your type of surgery and how you react to treatment. Did you ever consider a feeding tube? Is it painful to swallow or is it difficult to swallow?
Caregiver/twin sister to Cathy diagnosed with tongue cancer Feb. 2004/partial glossectomy and neck dissection Mar 2004/recurrence may 2004
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#15753 06-14-2004 05:09 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 | Hi Leena,
Welcome! I couldn't eat many things after radiation and for some reason, sour cream and yogurt burned my mouth but I could drink Dr Pepper at will. I got so tired of everything tasting so wierd that I lived on 11-12 Dr Peppers a day. I was eating fried chicken in 2 weeks because the doctor wouldn't release me for work unless I was eating solid food. I went from 211 in August to 145 in January and am now at 170, 8 months after radiation. I am sorry you feel awful but there is nothing wrong with not being brave and cheerful right now. You have been through a lot, ma'am. Hang in there, you will feel better in a few short weeks and it is all good from there.
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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#15754 06-14-2004 05:55 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Welcome Leena, You are just about where you will start to feel better! Hang in just a little longer. I lost 30 pounds, just knuckled in and fed myself a little at a time.
Take care
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#15755 06-14-2004 06:33 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2002 Posts: 541 | Welcome Leena, it is natural to feel awful after treatment. I only had radiation and chemo to shrink the tumors in my left tonsil and neck lymph nodes. I managed eating without a feeding tube and lost about 16 lbs. There were many days when eating and even drinking water was severely painful but I insisted on eating by mouth. Many people here prefer a PEG tube which seems to be a life saver to them.I am Chinese and my major diet at that time was congee. I gained back all my lost weight after 6 months post treatment.Be patient and you will see the light at the end of the tunnel soon.
Karen.
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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#15756 06-14-2004 08:20 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2002 Posts: 458 | Hi Leena, you are at about the worst of the process, just after radiation is done. Good news is that things pretty much get better from here, but it's a kind of slow process. The last week of rad I was doing good to get soup, yoghurt and ensure down the hatch. Did the rad/chemo twice, first time involved radiation to the tongue went from 170 to 145. Second time just had rad to neck, but still went from 145 to 128.
Now back up to all of 140, mostly because my diet is fairly low fat and I don't really want to put on a lot of weight anyway.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#15757 06-15-2004 01:06 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Leena,
Welcome to OCF. I'm sorry you've had to go through this, but as some of the others have said, you're at a stage where you should start to see some improvement in the near future.
My weight went from around 130 to 112, mostly during the latter weeks of radiation. My doctors had warned me from the start to be diligent about keeping my weight up as much as possible, so I kept trying to force soft food down even when it was painful and tasted terrible. (I never had a tube, so I can't comment on that alternative.) I had regular visits with the nutritionist at the hospital, who kept close tabs on my weight and tried to adapt my diet to deal with whatever eating problems I was having.
I hope things start to get better for you soon.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#15758 06-15-2004 03:53 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Leena, towards the end of radiation (7 weeks) I could not eat and would not even drink anything,my throat was very sore, I could not speak either. I lost about 25 lbs. Trust me it does get better, I have gained back all my weight and some! SMILE! God Bless You! 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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#15759 06-15-2004 12:53 PM | Joined: Jun 2004 Posts: 106 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jun 2004 Posts: 106 |
scc right tonsil T1N1M0, right tonsillectomy + modified neck dissection 3/04, radiation IMRT both sides X33 ended 6/04.
Also had renal cell carcinoma, left kidney removed 11/04
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#15760 06-15-2004 01:08 PM | Joined: Jun 2004 Posts: 106 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jun 2004 Posts: 106 | Thank you
I know what I am going through is normal, but it is good to hear it from all of you. I have lost 25 lb, and was overweight to begin with, but I would not recommend this for a weight loss diet. My mouth and throat are very sore, and since 2nd week of radiation I have had nausea off and on, now almost all the time - Zofran helps some, but hard to keep anything down. I can drink water, and have been able to get down a yoghurt smoothie today. Feel a bit better now, Thanks!
Leena
scc right tonsil T1N1M0, right tonsillectomy + modified neck dissection 3/04, radiation IMRT both sides X33 ended 6/04.
Also had renal cell carcinoma, left kidney removed 11/04
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