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#53606 10-28-2004 10:11 AM
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Brian,
You must study night & day, thank you for the advice!I have been experiencing some "moans groans & kidney stones" in the waiting period for my thyroid surgery and in the past nine years of my life and have been prescribed & taken Naprosyn...I will not take it again, my preference is not for brand name NSAIDS but for ibuprofen 400 mg.
This may be of interest to you & members of the forum as it covers effects of Radiation in the head & neck area on not only the Thyroid gland but the parathyroids also....I studied long & hard from this website
http://www.endocrineweb.com/capap
as to why I am having excarberated symptoms of depression, mood swings, fatigue, muscle cramps, bone pain & kidney stones since my RX of oral SCC & more specifically since finding a follicular tumor on my thyroid gland. Yesterday I presented the info I had looked up on Hypoparathyroidism (underlined as a link in the section on Follicular cancer of the thyroid-P3.) to my H & N surgeon & was told much to my chagrin that was NOT what my tumor was doing to me..but it seemed perfect!It explained the "hormonal" changes, the bone pain that awakens me each night at 4 am, the absolute sadness, the leg cramps during the night, the "nap attacks" I feel coming on all day, the occassional 4-6mm kidney stone I end up getting pain relief for at the local hospital-all this & more on the premise that the diseased parathyroid gland gives the body incorrect info as to what amounts of calcium it needs & thus takes it from the bones & affects hormones etc according to raised or lowered levels of Calcium - unfortunately this was not the reason for my ailments as my tumor is IN the right thyroid lobe not in the parathyroid gland located just behind it and I have cancer, not parathyroidism.
Point being that although it didn't help much with my RX at this time it was a most informative & helpful site regarding IMRT to H & N areas.
Take care,
Maria


01/04 SCC of tongue base, T1N0M0
03/04 Partial glossectomy
04/04 Rad
12/04 Throidectomy(follicular cancer)
#53607 10-28-2004 10:43 AM
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Maria,

Just curious if you have had the Hep C test? The liver can cause all of whay you mention except the kidney stones.

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
#53608 10-29-2004 06:53 AM
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Ed
I know that my liver is fine; having had numerous tests over the years: before oral cancer I had RA(Rheumatoid Arthritis), before RA I had cervical cancer. I just think my body doesn't absorb calcium well at this point in my life.
Maria


01/04 SCC of tongue base, T1N0M0
03/04 Partial glossectomy
04/04 Rad
12/04 Throidectomy(follicular cancer)
#53609 11-01-2004 06:44 AM
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Brian
Since the recent removal of Vioxx, a Cox-2 inhibitor from the market, would you still encourage the use of Celebrex? And does Celebrex have a different chemical make-up?
I do realise that all such decisions are personal and you are just sharing with us what you personally are doing but, I would appreciate your thoughts on the subject.
Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
#53610 11-01-2004 01:47 PM
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With each method of COX -2 inhibition there are slightly different courses of action. Hence the two unique patents on Vioxx and Celebrex. Do they both cause problems? The manufacturer of Celebrex says that their studies did not show the adverse effects of the Vioxx group, but they are undertaking a separate set of studies (not required of them) to establish this for sure. That to me is the mark of a company that not only is covering their financial ass, but is perhaps also genuinely concerned with more than the bottom line. The FDA has not asked them to do this at a significant expense. (On the other hand some risk management consultant probably told them that it was the prudent thing to do.) I have been taking very low doses of Celebrex. I see a cardiologist for other issues that were of interest to me, not related to clinical cardiac need or cancer. He reminded me that while there have been issues with some individuals and cox-2 inhibitors (Vioxx), the issue in the news is a reflection of legal/financial defense and to pay attention to the small numbers of individuals (out of millions that took the drug) who were impacted negatively by it. The data that revealed the problem has not identified what those who had a negative reaction to it had in common. So essentially while those impacted were a small number, even one is too many if you DO NOT NEED the medication. When it comes to chemoprevention, the argument could be easily made that we do not need the medication and therefore it is not worth the unknown level of risk. So I began looking at alternative cox-2 inhibitors. Certainly the naproxen avenue which is over the counter as Aleve is one option that has an extremely low adverse reaction rate, (low enough for the FDA to move it from a Rx drug to and over-the-counter drug), and then there are herbal cox-2 inhibitors as well. A trip to any health food store will allow you to locate a variety of herbal combination supplements (some with 8 or more herbal ingredients) that have some of the same cox-2 reduction effects. For those with any concerns, these would seem the most appropriate, though their strength will be significantly reduced. But there is not an established level of inhibition which has been determined to be effective in recurrence prevention (and published as such), so perhaps these would offer enough from a chemoprevention standpoint, and even enough to alternate with the Aleve that I take for my many back problems, (and inflammatory pain), from falling out of the sky in helicopters too often. This doesn't answer your question with a finite answer, but it is the best I can offer.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#53611 11-02-2004 04:20 AM
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Brian
You explain things so succinctly...thank you, I appreciate your taking the time to do so.
Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
#53612 11-06-2004 09:23 AM
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Isn't COX2 over-expression a component of active disease? Meaning if you don't have active disease a COX2 inhibitor provides no benefit from a chemo-prevention stand point. Is this not the case?

-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.
#53613 11-06-2004 01:19 PM
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As far as the hard science is concerned, this is a chicken or the egg kind of situation which has been defined in general terms at this point in time. Most of the researchers that I have spoken with believe that it is a precursor event, and not a by-product event. Yes it is a component of active diseases many times, but the appearance of it often precedes the symptomatic disease. So the question is, is it a facilitator and promoter or not?


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#53614 06-24-2005 04:26 PM
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Seems to me that Gendicine falls into the same "Chicken or the Egg" paradox.

Reading their claims it sounds very promissing.

I have all but bought tickets to Beijing. :-)

Without exception; every one of the 26 Dr's I've seen since Dx (some of them of Chinese disent) have dismissed Gendicine as rediculous.

http://www.sibiono.com/sites/admin/enmain.jsp?catalogID=58

Of course, that's what the establishment thought of Pasteur too.

Maybe the best vector to consider is AAV2 based on the recent announcement from Penn State.

http://live.psu.edu/story/12505

Hope. Is this what it feels like?


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#53615 07-02-2005 09:02 AM
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Brian, Thanks for the information and the article link. Since my husband's BOT cancer diagnosis in January, I've spent a great deal of time researching H&N cancer, treatments - traditional and complementary. Regarding the COX-2 inhibitor, are you familiar with an herbal product called Zyflamend -often recommended by Dr. Andrew Weil on his website, as a substitute for a prescription COX-2. A few of its key ingredients are turmeric (with turmerones and curcuminoids), ginger, and green tea, among others. I would be concerned about my husband using prescription COX-2 drugs since he has had liver problems in the past (although his liver tests have all been normal for six years now). Also, my husband is just 7 weeks post radiation. He never had to use the peg except to get extra water. He still has it. Would there be any issues with using the peg for green tea consumption? I'm most interested in anything that would prevent recurrence especially since he was just told there is a possibility he may have a tiny one in the exact spot that they did the surgery and then radiated. Tests are in progress. I, also, would love to see more on this topic.


Wife of Jerry - Dx. Jan '05. SCC BOT T1N2BM0 + Uvula T0N0M0. Stg IV, Surg on BOT and Uvula + Mod Rad Neck Diss.(15 rmvd, 4 w/cancer), IMRT 33x. Cmpltd 5/9/05.
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