#37561 06-23-2004 03:40 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 | Sweety,
Welcome to the neighborhood! I am sorry you are having to go through all this and unfortunately it will get a bit rougher before it gets better.
Do you have anybody with you through this? I believe, personally, that this is essential. I could not have done this alone or I would not have chosen to do it alone. My wife took charge and made it much more tolerable...for me anyway. You would have to ask her for the real scoop!
You will get very confused mentally with all you are going through and you might want to get out a notebook or piece of paper and start writing every question down that you have. The treatment will hamper your ability to reason, remember and deal with things as it intensifies.
You are probably too far into the treatment to question if it is the best approach but you can still pester the doctors to answer your questions. That is part of their job, too.
Many times, the chemo is used to help the effectiveness of the radiation. I do not know your specifics, though, and this is my experience.
My hair thinned out and I looked like a (giant) baby bird. When I went by the mirror sometimes I didn't recognize myself. I wore a bandana over it to protect my head from the sun. Now it is very thick and darker than usual, although curly in the back for the first time in life. It took about 7-8 months to fill in but I hardly noticed it.
I hope this helps. If the doctor tells you are lucky to receive a low dose of chemo, ask him why this is so. When he tells you anything that you are not 100% clear or fully understand, ask him until you are very comfortable. He will most likely assume that if you do not ask, you fully understand. Look out for yourself as nobody else will have your interests at heart like you do!
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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#37562 06-30-2004 03:40 AM | Joined: Jun 2004 Posts: 17 Member | | OP Member
Joined: Jun 2004 Posts: 17 | Thankyou everyone for your advice and support. Sorry I have not been around but am feeling terrible at the moment.
warmest thoughts
Sweety
Stage 1vb Metastatic Cervical Cancer.
Metastatic squamous neck cancer.
Currently having RT,Chemo. Tumor removed 07/04 Immune therapy.
WHERE THERE'S LIFE THERE'S HOPE.
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#37563 06-30-2004 05:43 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | Sweety, if you're getting concurrent chemo/rad, then that is a rough road indeed. When taken together, the chemo has a tendency to increase the side effects of the radiation and vice-versa. The good news is the chemo also sensitizes the cancer cells to the radiation, which makes the radiation more effective in killing the cancer.
On your next doctor's appointment, grab your hubby/boyfriend/best-friend/what-ever and take them with you. They will think of questions that you haven't thought of and it will make them feel better to be part of the fight with you. My best friend came with me to every chemo treatment and most of the clinics. His clear thinking helped him to come up with questions that I hadn't thought of and his advocacy during treatment was very helpful. He told me later that it helped him better deal with my cancer.
Hang in there!
-Brett
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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