#66272 12-28-2007 08:24 AM | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Jan 2007 Posts: 346 | Hello to all-
I have been working and not able to get on the site much anymore.But I do read and keep up with you all. Now I have a
dilema maybe some of you could help me with.
I decided myself to take multi vitamins and calcium supplements after my suregery to help get my strength back. Then I read an
email from Brian that he takes selenium and aleve and vit e. So I started to take those. I feel wonderful, by the way, with energy and stuff. Just still have pain in my gum and tooth area from constant rubbing.
I am gaining weight by leaps and bounds since my peg came out. I wonder if the vitamins are doing this? I don't really eat that much more than I did. I did quit smoking last year before my surgery.
The health food store told me today that I should take a body cleanser once a year to kill parasites. They told me about parasites and I about passed out right there. Help me yaull, is there any truth to this? I would like to think you could rinse yourself out of germs but this just sounds gross to have parasites!!
What do you all think of vitamins and supplements. MY doctor doesn't really say I need to take anything. That's odd too.
Healthy and peaceful new year to you all!
Debbie
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
| | | | | Joined: Jun 2007 Posts: 214 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 214 | This is a great question, I'm glad you asked it. I have been wondering what everyone has been taking for supplements after completing treatment. Re: parasites---I do take herbal supplements for candidiasis(yeast or thrush), which is considered a parasite. I had a problem with this even before treatment. I will tell you what else I take---multivitamin, iron supplement, biotin, MSM, Evening Primrose Oil, Fish oil. I also take astragalus and chinese mushrooms for immune system support. What does everyone else take, and what have they been told NOT to take?
Debbie, good luck getting your strength back!! Teresa
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Before I took anything I would ask the advice of my docs and I really doubt the benefit of clensing your body of parasites except the profit you're putting in a few peoples pockets. JMHO
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I agree with David on the lining their pockets. I was told to take a multi vitamin such as centrum silver.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 214 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 214 | I have to agree with David and Jim that you have to be skeptical of companies 'hawking' cleansers and detoxifiers. They can be quite expensive, and potentially harmful.
I am taking specific antifungal herbs that are not part of a 'system'. I have a problem with yeast overgrowth, so I can use a natural remedy, or take diflucan forever.
Is anybody taking antioxidants? I was told to stay away from them during treatment, and I am still staying away from them.
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | If you have parasites in your body - you need a doctor, not a vitamin/herb salesman. This person is full of BS.
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.
| | | | | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | I haven't heard much and I hate taking pills and alot of things upset my stomach... So I don't take anyhting.. The Gp probably would like to me to take a multi with iron.
As far as Vitamin E .. I think i read somewhere that it increases your risk for reccurance , has anyone else heard that ?
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | You are right. Since my earlier post I have stopped taking E. For most people a good multi each day will do the trick. The data behind most chemo-protective agents is thin. But if there are no toxic levels, and there are no known ill effects of taking it...if it makes you feel better (even a placebo effect), and you can afford it, likely no harm done.
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.
| | | | | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jan 2007 Posts: 346 | Thanks everybody,
I did hear that about Vitamin E. I am having a little bone loss after my jaw reconstruction failed from the drilling in the bones that they did so I take Calcium with D and try to get in the sun belive it or not.
I figured the parasite thing was a rip but it was horrible to think such things. My doc never does blood work so I don't know how I would know.
Is selenium still good? IN VA here, I read somewhere that there is a deficiency of it.
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I took 400 mg of vitamin E for years until one day a Dr in the eroom told me to to quit takng it. He said I might be causing more harm than good. The centrum has enough vitamin E in it. Therefore I a large bottle in the bathroom closet taking up space. Trash time if I ever think of it.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 214 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 214 | Which supplements are considered antioxidants, besides vitamin E?
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | There are a a ton of things that are anti-oxidants, but they are not all a problem like the one with E. Start with a good multi like Centrum, you are going to get most of the basics in the right proportions there. Key word here proportions. Mega dosing on one thing that inhibits the absorption of another, or taking something that only works in conjunction with another ( which you are not taking) is a science unto itself, and you can just be tossing your money away. You can add after that balanced multi-vitamin/mineral pill.
For the most part a lot of what the vitamin stores are selling, there is very weak data on the benefits of. The nutraceutical industry is VERY loosely regulated, and as long as they say they are not making any specific health claims on the bottle, they, for the most part, can sell it. I just finished a book that is on the NY Times best seller list that I thought was well balanced, it is called YOU staying young. The authors are two MD's Oz, and Roizen. It is an easy read - kinda like the "for dummies" books, but they really sorted through things that work and have evidence and things that do 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.
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Ditto to Brian's answer
More than once I have been told to stop Vitamin E and baby asprin a week prior to surgery or certain proceedures. Now that information has shown that vitamin E is not necessary and can be harmful, I have stopped taking it. On any vitamin or supplement check what % of daily dose is there. Even that is not always reliable as these products are so unregulated. Your pharmacist is good source of information on which vitamins, supplements, herbals, OTCs, ointments, etc. are suitable for you according to the medicines you take and your health conditions. Even different brands may be better or worse for you.
Another caution: Some medications for osteoporosis have an adverse affect on the jaw and some don't. Ask your doctor if your Rx should be changed.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
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Joined: Apr 2005 Posts: 2,219 | Malka,
In reference to osteoporosis drugs, as far as I know there has been no clincal data to show that oral bisphosphonates (like Fosamax) are causing any jaw bone problems. It is the IV bisphosphonates used during chemo for certain types of cancer, that are causing ONJ (osteonecrosis of the jaw).
ONJ is a newly recognignized problem and even before the facts had become apparent, several years ago one of my partners in my dental practice had developed this problem. He was on Zometa to strenghten his bones due to multiple myeloma. He had to have a tooth extracted due to bone loss and the area did not heal for a long time. We didn't know what was going on and it took quite awhile for the information to get out to the dental community. He has been off the drug for 2 years and recently had another tooth extracted with no problems.
Hope this is helpful.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Interesting! I'm due my monthly Zometa on Wednesday.
I've been on it for 6 months now and when I started it, looked up the problems--jaw-problems being listed.
As the onc. had said it was being prescribed FOR my jaw-bone thinning, (mega-problem, tumour had 'eaten it' and I have an exposed nerve) I queried this at my next appointment, but was told the benefits outweighed the risks!
I guess, in my case, it doesn't really matter that much at this stage!
Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
| | | | | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Of course ..now I am wondering .. For years when I was MUCH younger , I took Vit E for my skin ...could this have caused my cancer ?
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Shar, There is no data suggesting Vit. E causes cancer or anything close to that as far as I know. From what I remember, the data just show that people who have had oral cancer get recurrences sooner when they are taking Vit. E. As I recall there wasn't even any significant difference in survival overall which implies that the E may not cause so much as magnify what is already going on. Anyway, I wouldn't think taking Vit. E years ago would have an effect.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Jun 2007 Posts: 214 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 214 | Shar, I wondered the same thing about my cancer. Was thinking I had caused it by using soy products, because they are considered very controversial. I still use soy, but less now. I think I will ask my MO what he thinks.
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
| | | | | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | I guess I am still grasping at straws trying to figure out where it came from ..... Maybe almost a year later , I should let it go and chalk it up to ..it is what it is. and I will never know.
Just wonder that is all and with the new year aproaching ... I am thankful to be ending this last year of my life....But so fearful of what the nexxt will bring . This is just an all of a sudden thing for me .. I was fine . But the past few days I just have a Knot in my stomach over it .. Weird huh ?
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
| | | | | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jan 2007 Posts: 346 | NO shar you are not weird.
Everyone where I work says to me that they know I am glad this year will be over and next year will be better. I smile and shake my head and think to myself-Oh my gosh, I sure hope it is better,but I have no control over it. That is the thing. If we knew what vitamins or foods to eat or not to eat or what caused this so we will not ever do that again, then we could learn and live with it. But all of us cannot know and never will know. We must just learn to live with it. AT least we are cancer free today-and that really is a great reason to be happy for today!!
Debbie
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
| | | | | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jan 2007 Posts: 346 | Boy, I just read what I wrote and it doesn't show anywhere in there how really scared that I am. Just plain scared-I know you all must be sometimes too.
Sorry for that.
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
| | | | | Joined: Aug 2006 Posts: 199 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2006 Posts: 199 | I know I feel very scared sometimes, wondering if this will come back and when. I tell myself to be thankful that right now, I am healthy, happy, and have a good life, but sometimes it's just not enough to keep those feelings away... The other day I bought some little things on sale post Christmas for next Christmas's stockings, etc, and as I put them away I had a fleeting thought that I should tell my husband where they were in case I'm not here next Christmas. Morbid? Yes - but also realistic. I tell myself that NO ONE knows for sure if they'll be here tomorrow... but then again not everyone has to live with knowing that they have a 65% chance of their cancer recurring....and constantly looking in their mouth and feeling their neck and imagining new aches and pains....
I don't worry my husband or the rest of my family about these feelings - I know everyone here understands and has been there before. And I also feel deep sorrow for all the people who have lost this battle or are fighting new recurrences - and wish I could do more.
But in the meantime I will push those feelings aside for a while, go take my dogs for a walk with my wonderful husband, and we will cook an amazing New Year's Eve dinner tonight... I hope most of the rest of you can have a good start to the New Year!
Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
| | | | | Joined: Feb 2007 Posts: 34 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2007 Posts: 34 | I have gained a little weight too but I figure it was from the muscle that I lost not being able to do anything for so long. | | |
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