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Tamoxifen as support

Well had my 3 month check today and all is ok  my CA125 was 2.2 up .8 but within the variance.  I am going for another CTscan as the last one had a lymph node slightly enclarged. But the pet scan was clean so we let it be. Now I need to see that it hasn't changed anymor.

Thank you to all that told me to breath deeply and relax.

I am now going to take Tamoxifen as perventive therapy.  My tumor was Estrogen positive and instead of wanting for a change we are going to use it.  Also I am at high risk for breast cancer.  Has anyone had experience with Tamoxifen to let me know what I am in for.

Thanks
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Avatar universal
I think them banning them (pharm companies and oncologists) is simply a matter of lawsuits and money.  One you perform a very expensive FDA clinical trial and the last thing you want to do is yet another one to see if a supplement works or doesn't work with it.  Their goal is FDA approval and pretty much that's it...the sooner it gets to market and makes money, the sooner they can get back their investment money and make investors happy.

I can say for one supplement, Maitake D-Fraction, that is approved for use with all chemos by Memorial Sloan-Kettering Cancer Center...in-fact it's the only one they approve across the board.

Are their some chemos that shouldn't have certain supps with them? Sure, mom's Hexalen says no B6....well it doesn't exactly say that but it says that B6 helps with the neuropathy but the drug takes longer to work if it is taken.

I think the big thing is not to go overboard with supplements and very few cancer patients do.  The reason oncologists say 'no' is because they look at these lab studies...in vitro stuff or one's done on animals.  Both are impossible to do in vivo humans.  It's like that bad aftertaste from vomit in your mouth that lingers...that's what is happening.

The book, "How to prevent and treat cancer with natural medicines" by Dr. Michael Murray and endorsed by the Cancer Treatment Centers of America is a fantstically well laid out book that expains, based on research and trials, which supplements to take with what chemos and which cancer.  It also goes into nutritional stuff as well to give you this complete overview of complimentary therapy.  
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167426 tn?1254086235
have no proof  but since thry banned all supplements and vitamines for leslee during her trial and it progressed   what could have happened with them added.  if i ever find out the answer to that question !!!!!!   she took them during her first line chemo and felt good most days   we need to find out if it is the pharm co that are advocating not to take supplements  because they are afraid of losing revenue  there are too many questions about ovca that are not being addressed  by those involved in providing the treatments
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Avatar universal
I think the two links I put in my reply (C7) should answer some questions about antioxidants and chemo.  It all stems from an article from a not well constructed study years ago that everyone latched onto.  The dosage they gave in that study would almost be impossible to achieve in a human (super high dosages) and it was also given intravenously.  To top it off, it was given to lab animals...which are unreliable in determining the results in humans (why they still test on animals in the 21st century is beyond me...oh right...the lawyers like it).

Anyways there are more and more studies coming out (check out pubmed, etc.) where supplements are being studied alongside chemo.  The results are showing that there typically is no negative effect and in the control group, their life expectancy is tyically less than the group receiving supplements whom live longer and have fewer side effects.
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Avatar universal
You are on three drugs I know nothing about so I can't help.  But all drugs have a life time in which they are working.  Once that time is done and before you begin your next cycle why can't vitamins be used to suppliment you diet.  And off a couple days before you begin again. These drugs hurt all our cells and we need to build our bodies up again before the next treatment.  Again you drugs might have a long life in the body which might be a reason for staying away from suppliments.  Try to learn how the drugs work.

sorry not much more help
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167426 tn?1254086235
i guess we all would like the info about what proof is out there that vitamines and supplements interrupt the effectiveness of chemo drugs   there seems to be a wide spread disparity in the cause and effect , harmful or helpful.  since so few trials are done with supplements, how are we to know for sure that  what we read is fact or fiction.
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Avatar universal
I thought I would 'throw the cat into the canary cage' and ask for comments on what my Oncol. has told me regarding the chemo(s) that I'm presently taking.  I have been instructed definitely no vitamins, supplements or alcohol. I don't take any of these at anytime, (only some wine when off any chemo)..so it doesn't bother me, but I would be interested in hearing opinions on this. I am on CMF (Cyclophosphamide, Fluorouracil, Methotrexate) at the moment, and he has told me to eat lots of vegetables, and a healthy 'across the board' diet, taking in red meat, some dairy and anything that I like, but absolutely NO vitamins etc. as he says this would definitely interfere with the chemos.
Any thoughts on this would be appreciated... and thanks.
Hope everyone is doing well... especially your Mum, Alan.
Have a great weekend.....Helen...
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Avatar universal
CFK
Alan-thanks for your very informative reply. I have been looking at my CoQ10 tablets and each one is only 60mg and the recommended daily intake is one of these! So I am very confused and intend to look into it further.
Regards, Cath
PS - I am from Troon in Ayrshire, which is around 30 miles south west of Glasgow, by the sea. Edinburgh is on the opposite coast, around 80 miles away and a fascinating place to visit.
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Avatar universal
I just saw something in my latest edition of Life Extension magainze.  Page 82 talks about Melatonin and breast cancer and Tamoxifen.  Those who failed to respond to Tamoxifen were given melatonin supplements (20mg every morning).  They demonstrated an improved response to tamoxifen.  More than one quarter of the subjects-whose disease otherwise was expected to progress rapidly-begain responding to treatment.

Cool huh!?

Alan
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Avatar universal
I agree with Alan  Alot of new research shows antioxidants do not interfere with chemo. If necessary I will pull up some articles if any one wants to read about it  When I went thru my first line of meds I was caught between what I wanted and the doctors so I compremised  I took all my vitamins and minerals about 20 a day 5days after by Cysplatin and Taxetere to two days before my next treatment.The two drugs are only active about 3 days after they are in your system  My blood counts stayed steady and I never got sick.  During my treatment i toook a fair amount of Ginger because of its possitvie effect on Ovarian cancer in the lab.  Only time will tell if it helped but my CA went to a low 1.4 but now that i am going on Tamoxifen I will be taking Coenzyme Q 10  I have read enough that I will take it.  Sometimes I feel me the patient needs to have control and not the doctor and their angle on meds.  My doc is pretty good though and says he can't stay on top of everything and if it won't hurt me its ok. i spent the better part of today reading about Co Q10 in England and Europe and its effect on cancer.  Thanks to everyone with there input
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Avatar universal
What part of Scotland are you from?  My mom is from Edinburgh!  My brother lives out there too.

Anyways Doxil (as you know) can promote heart damage and there are lifetime dose limiting toxicity levels for Doxil.  So CoQ10 is used to prevent this damage.  Supposedly (from the research) cancer patients feature a lack of CoQ10 in their system already, and with that Doxil can be dangerous to the heart.

Your thoughts on antioxidants are common, but emerging research shows that this common belief no longer holds water like it used to:  http://www.alanpeto.com/ovarian_cancer/blogs/13/

While it may sound strange, some studies are showing that antioxidants protect the normal cells while either not effecting cancer cells or making cancer cells more sensitive to chemo.  It just goes to show how much we still don't understand about cancer treatment.  Heck *many* cancer drugs that are mainstream, their actions on cancer cells is still *unknown*...the pharm companies have no idea how it really works (it's actions) against cancer (beyond the basic belief of how it works).  It just all depends.  For example Hexalen (oral chemo) you can take vitamin B6 to help with the neurppathy but their studies show that it will slow hexalen's response.

Dr. Murray wrote a pretty brief but good rundown on why antioxidants are ok to take during chemo:  http://www.doctormurray.com/articles/Chemotherapy.htm

Now for CoQ10, while it is true it is considered an antioxidant, it's main mode of action seems to be with the heart.  Your body actually has CoQ10 stores in muscles (etc) just to be ready to support your heart (sorta like military reserves in a big war).  But CoQ10 can be depleted quickly, thus supplementation is important.

It is also believed that CoQ10 stimulates the immune system.

So what to do?  I would, in my unprofessional opinion, that taking CoQ10 with your Doxil is a smart move.  Most progressive oncologists would probablly agree.  The combined use of it with cancer treatment looks very promising, but like I said it's doubtful we'll see any major clinical trials because it's too common a supplement to make a buck off of (if the pharm companies were really smart they would see if it worked in conjunction with their drug to make it more effective!).

Talk with your oncologist and see what he thinks as well.  In the end it's your decision, so if you do decide to take it perhaps you want to start out small...for example taking about 150mg a  day, then working up towards the 390mg shown in trials.  There is nothing set on this beyond the studies out there (one oncologist said until he started giving CoQ10 to his cancer patients, he never saw such remarkable stabalization and responses in patients who should be dead).

Gives you goosebumps doesn't it?  I wish there was more of a worldwide combined effort to find treatments that work for cancer.

Good luck!

Alan
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Avatar universal
CFK
I've read your really interesting comments on CoQ10 - the amount of research you do is mind blowing! I am undergoing treatment in the UK (Scotland) and I am experiencing my first recurrence. I have just had my 3rd Caelyx (Doxil) treatment and am interested in your comments re use of CoQ10 with the Caelyx. I thought that as CoQ10 is an antioxidant which helps prevent cell damage it would be counter productive to use it while on chemo as the chemo has to damage the good cells while damaging the bad cells. It would therefore seem logical to assume that the CoQ10 could interfere with the effects of the chemo. I have stopped taking it for this reason - I have also stopped taking Essiac as I am worried about it interfering. I have asked the hospital pharmacist about this and he was unable to say one say one way or another. What do you think?
Best wishes and keep up the good work, Cath
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Avatar universal
Hi!  This is (CoQ10) is actually going to be the next article I'm going to write, but I'm busy taking care of mom right now.  

From what I can tell, it's one of those types of supplements that is probablly going to work with most if not all chemos.  However this study (a European one) is the only one regarding that particular type of chemo and cancer (breast cancer) so there is no comparison with Doxil unfortunatley.  

Here is the PDQ on it from the NCI:  http://www.cancer.gov/cancertopics/pdq/cam/coenzymeQ10

I believe the reasearch that will eventually come will show CoQ10 has a place in cancer threapy...either in helping to stop/prevent the cancer or more likely as a complimentary therapy to help with chemo.  There just isn't any interest (because no profit) to conduct clinical trials with it.  What we have are the lab research and some trials (that are not double blind, etc) and also individual results by patients themselves.

I quickly researched doxil and CoQ10 and found some things:

1) It may help with heart damage by doxil:  
- http://www.lef.org/magazine/mag2005/oct2005_report_coq10_01.htm
- www.citrinesun.com/Hearthealth.html+coq10+doxil&hl=en&ct=clnk&cd=2&gl=us
- http://72.14.253.104/search?q=cache:7SfkXeO7bNAJ:www.hystersisters.com/vb2/archive/index.php/t-264051.html+coq10+doxil&hl=en&ct=clnk&cd=3&gl=us

2) may prevent some of it's side effects
- http://www.level1diet.com/research/id/73362

3) prevents cancer from spreading
Univ of Miami researchers found that it had an effect on prostate cancer cells (70% within 48 hours in vitro) and they also researched breast cancer cells in the same manner with similar effects.  Because both of those are estrogen type cancers like ovarian, we can only assume the same may be true.

Hope that helps...talk with your oncologist on this one, I think CoQ10 is fairly well known and they should know about this one especially with Doxil.  Although it's cancer fighting properties are going to be 'unknown' until there is a well designed study(ies), it looks promising!

The dosage I see them always talking about are in the high 300's mg per day (like 390) that had a big impact.  The min was about 90mg per day that provided a general good response.  I notice that LEF (www.lef.org) has a version that is only 50mg but it's more bioavailable and works better than regular CoQ10 (their lab results in vivo look shocking compared to regular type).

Alan
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Avatar universal
alan  I thought I read alot you are unbelievable. I will on it first thing in the morning.  Again thanks to all.  Your messages always lift my heart.

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167426 tn?1254086235
would you combine coQ10 with doxil also
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Avatar universal
If you are going to take Tamoxifen, look into CoQ10 (Coenzyme Q10) with your oncologist.  I've seen research (this article lays it out pretty niceley:  http://www.lef.org/magazine/mag2006/feb2006_awsi_01.htm ) that shows that breast cancer patients that took CoQ10 at low doses with Tamoxifen had 100% survival rate.  Those who took the larger dosage of CoQ10 (which is the standard dosage it seems like everyone is looking at in regards to cancer) had impressive results.  There is no clinical trials yet in this country (probablly because this is a common supplement and no big money in it for the pharm companies).

Alan

------------
Ovarian Cancer Research Website
http://www.alanpeto.com/ovarian_cancer/
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Avatar universal
I have no experience with Tamoxofen but I do want to say congrats on making it through your check up without falling out of the roller-coaster.....what a ride this is!  It is up and down, round and round...jerking...falling.....terrifying like an old wooden roller coaster!  Sounds to me like you took your ride and you are once again on your own two feet!  Now  stay that way....again...congrats (and thanks for the smile you put on my face!).
Peace.
dian
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