#43552 07-07-2004 04:49 PM | Joined: Jun 2004 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2004 Posts: 26 | Hello all... I am taking care of my sister during her chemo and radiation. She has now developed thrush and is on nystatin. She is just beginning to have hoarsness of her throat and the doc's have told her to only whisper. We are working diligently on keeping her from talking out loud. I've read how serious the thrush can become. The doctor just casually told her she needed to take her medicine. She didn't realize the importance, and because the pharmacy did not have it for two days ... just let it go. I have sent her a copy of the article on the site about the dangers of Thrush.
Also the scars on her neck and arm from the surgeries look so bad, and she complains they are tight. She is applying aloe vera gel, and some vitamin E ... are there any other products she can use on her scaring ?
We are hanging in there. Tomorrow is chemo and radiation again. No hair loss yet. Skin blotching bothers her.
Tomorrow they will also shave her scar and get off the rough edges, etc.
Wishing you all the best. Betty
Caregiver to Sister, Woodstock, VT - 3/4 tongue removed & reconstructed w/forearm 5/21/04, some in the lymph nodes, neck dissection, brachy radiation in the hospital and now going through 2nd round radiation and to add cysplatin chemo. Stage II-III.
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#43553 07-08-2004 01:23 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Betty,
For a while I also used Aquaphor on my skin, which seemed to help. Please note, though, that whatever lotions, creams, etc., she may be using, she should clean them off the area that is being radiated before each treatment, as some can adversely affect the radiation process.
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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#43554 07-08-2004 10:05 AM | Joined: Apr 2004 Posts: 156 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Apr 2004 Posts: 156 | Listen to Cathy - I learned the hard way. Though the skin itches and hurts, it was worth wiping/washing everything off 6 hours before the appointment. If I didn't, my skin hurt like I never want to feel again. If necessary, I'd take a sleeping pill to get me through those six hours.
I felt like I was going through tubs of Aquaphor, but it was worth it in the end.
Sabrina | | |
#43555 07-09-2004 06:11 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 | Sabrina, Simon and Garfunkle played here last night and I get visions of "Slip Sliding Away" from your tubs of Aquaphor. 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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#43556 07-09-2004 06:59 AM | Joined: Jun 2004 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2004 Posts: 26 | Thank you all !! Right now she is having her neck and oral cavity radiated. They have told her to take her New Zealand Manuka Honey 15 mins before radiation and 15 mins. after radiation in her mouth. So far no sores and we just finished week 3. As far as her neck and creams or anything, I know she is using the aloe, but am not sure about the 6 hour time frame before and after. I will talk to her about it today.
She's very sunburnt like today. THis is the first time since I have been here that she is noticably "red."
On the chemo days she asked to be knocked out, sleeping meds ... so it all passes faster. Yesterday it didn't work well, because she never really fell asleep.
Thank you all again. And today is Friday so no treatments for the weekend.
Love to all. Betty
Caregiver to Sister, Woodstock, VT - 3/4 tongue removed & reconstructed w/forearm 5/21/04, some in the lymph nodes, neck dissection, brachy radiation in the hospital and now going through 2nd round radiation and to add cysplatin chemo. Stage II-III.
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#43557 07-09-2004 07:37 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Betty, the Thrush is not usually "critical" just that the faster you get it under control the better.
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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#43558 07-09-2004 11:02 AM | Joined: May 2004 Posts: 218 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2004 Posts: 218 | Hi,
Diflucan is what I was given due to the fact that the nystatin made me throw up like there was no tomorrow. I can still taste that stuff as I write this YUK! PETUEWE! AWWW That was nasty.
I am almost 5 months post and still have to take a 7 day dose about once a month or it comes back. It is a little pink pill and works right away. Talk to the doc about it.
Hope this helps sorry to get graphic.
Robert
SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04. 41 Years Old At Diagnosis
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#43559 07-10-2004 01:47 AM | Joined: Apr 2004 Posts: 156 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Apr 2004 Posts: 156 | I also use Diflucan and recommend it.
Sabrina | | |
#43560 07-10-2004 04:30 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Beside that awful aftertaste, Nystatin isn't as fast acting as Diflucan.
I was up to 400mg/day at one point (Diflucan that is). (I understand that people with HIV infections can get up to 800mg/day). The standard "maintenance dose" for cancer patients I read someplace is around 50 mg./day. I had to switch to Nystatin "swish & spit" in the end because I had taken entirely too much Diflucan. I just threw out the last container of it as I haven't needed it for quite a while.
It can suppress the WBC (nuetropenia??) if taken in large enough amounts.
I have never heard of New Zealand Manuka honey - what's the deal with that?
I should mention that my oncologist advised me to take colloidial silver (for mouth sores) which was listed on Quackwatch.
I was fortunate with the skin on my neck. The worst I had to deal with was a mild sunburn. It did go through an itchy phase and I was prescribed a steroidal cream which I only had to use a couple of times. It was the first area to completely heal as well, with the mouth sores and blisters being the last.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#43561 07-10-2004 09:55 AM | Joined: Jun 2004 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2004 Posts: 26 | Hi All ... Thank you again for all your input. I'm taking it all to the hospital with me each day ... so far Barbara has not complained about the Nystatin, but I have told her about the other medication, in case we need a change.
She is going into her 4th week of radiation and no sores in the mouth. She has used the New Zealand Manuka Honey 15 mins before radiation and 15 mins after radiation. The hospital gave her a small sample as it is very expensive in the U.S. Hers came from Colorado ...
However, when she told me about the honey, I contacted my dear friend who lives in Aukland, NZ and he said that they could get it for very cheap there, and raw ... the real thing with no additives, etc.
He shipped us over 4 1lb. jars and she says it is much better tasting than the stuff the hospital gave her.
No sores yet ... I'm keeping my fingers crossed. Her neck area is sunburned like you all said. She is just using aloe on this.
Now we are continuing to have a problem with the port for her chemo. Today it is swollen and sore and each time she has the chemo it burns. They did a dye test to check for leakage and there was none, but this is very bothersome to her.
Also, she was eating on her own, chewing and swallowing and the radiation and chemo I think is getting to her now. Both yesterday and today, we had to do the tube feedings because she just wasn't getting in her nourishment. She didnt' want to do it, but I had to make her ...
Also we have added Pedialite to her routine for fluids. She likes this and is doing well with it.
I'm off to pick up meds ... and in rural Vermont that is a 30 minute drive.
I love you all... Thank you for being there. Betty
Caregiver to Sister, Woodstock, VT - 3/4 tongue removed & reconstructed w/forearm 5/21/04, some in the lymph nodes, neck dissection, brachy radiation in the hospital and now going through 2nd round radiation and to add cysplatin chemo. Stage II-III.
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