list of alternative clinics-do you know them?

VIVO which list are you referring to?

I don't have experience with any on the list, but I can recommend the Block Center in Evanston, Illinois.  They are an integrative oncology practice.  They are medical doctors and my visit and testing there was covered by my health insurance.  But they are also very focused on diet, supplementation and lifestyle.  If you want to go to a medical oncologist who will also recommend alternative treatments I think they are an excellent place for that.

For example for me, I have some arm swelling, and they recommended that I could try a supplement called Diosmin, and also could try a treatment called Acuscope.  I think both of those are things you wouldn't hear from a completely mainstream doctor. 

They also told me about several places outside the U.S. that offer alternative treatments that they find promising for advanced cancers, so they could also point you in a good direction on that. 

Dr. Keith Block who founded the practice has a book out called Life Over Cancer that you can order from Amazon, and that can give you a great idea of where they're coming from.

Good luck!

Editing to say that upon checking back with the Block Center they told me that they recommended the Acuscope treatment for fibrosis and scarring, but not for lymphedema.

Vivo-

I am so sorry that you are feeling depressed. It is a terrible, hopeless feeling.

I wanted to tell you that I went on a holistic cruise last March. It is called www.atasteofhealth.org and there is another one coming up in March that you might be interested in. You will learn a lot. One of the lecturers is Dr. T. Colin Campbell. He wrote "The China Study". Dr. Neal Barnard will be there too. There is also a survivor group where 10 or so people tell what they have been doing for their late stage disease. The food is vegan and macrobiotic. There is yoga, meditation classes, cooking classes, and animal rights information. It was excellent and I would recommend it. I bet you could find out a lot if info there.

I don't have any personal experience but I believe that if I would find myself in need of treatment, I would consider going to the Gerson Institute in Mexico. There are 2 movies that you could probably find on line. They are: "The Beautiful Truth" and "Dying to have known". There is a member on the board MJ6266 that wrote that she was going to Gerson but I don't think she has been back on the board since Oct 23 so I don't know how she did.

I don't know if any of this helps you at all but I just wanted to let you know about it. Good luck to you and I wish you the best.

I have this website saved in my favorites. I has a testimonial about Gerson Therapy which I thought was interesting. I don't know if it will be helpful to you or not. It is www.healingcancernaturally.com .

Good luck to you. If I think of anything else, I will post again.

I too would recommend the Block Center.  They would not push chemo on you if that was not your choice.  I found their information to be up to date, well though out and timely.  Their supplement were comparable in price to the Life Extension Foundation which is where I buy some of my supplements.  They also did not push those on me, I chose to buy a couple because they were formulated by Dr. Block and are not available anywhere else.  Dr. Block's book, Life Over Cancer might be something worth buying to decide if this clinic is worthwhile for you.  I have met several women who were happy with their visits there. Good luck with your decision,

 Natada

Julia: I believe you wrote somewhere that you cannot believe it when you see women enduring terrible side-effects from Tamoxifen and AIs, but who just keep on taking it......Wonder if you had even seen this:

I have been on a combo of Tykerb and Herceptin - Herceptin for 15 months and both of them for 3 months now.

While I think it is much easier to tolerate than many other drugs (like taxoterrible!), there are some side effects which are still bothersome and sometimes it helps to know others have the same experience and share how we deal with them.  This is a list of the side effects I have...I know the list is long, but I don't usually have all of them at the same time :>  If you have a different SE or remedy I'd love to hear them!    

Diarrhea:  I got this on the day of my herceptin infusion (once every three weeks).  Once tykerb (1250mg daily) was thrown into the mix....boy did that change.  If I take Imodium, my diarrhea is reduced to 5-10 times a day.  Without one Imodium I can count on 10 to 20 a day....usually closer to 20 :<   I was given an Rx for this problem, but it doesn't work as well as Imodium.  Diet doesn't seem to have any impact on the situation either.  Brat diet didn't do poop for me...LOL!!!  My onc just told me to start Metamucil, so we'll see how that works....</em>

Rash:  This is a SE of the tykerb for sure and boy is it yucky!  I get folliculitis (big huge painful whiteheads) all over my scalp, face, neck, ears and arms.  I found clindamycin gel really helps keep my face under control.  I no longer have to name the largest of my tykerb zits - I am definitely glad to have lost that conversation piece!

I get a different kind of rash on my legs.  Currently, the back of both thighs is absolutely covered with this rash.  Big, painful, swollen red things.  No head, just swollen.  It's been 7 days and they seem to be calming down a bit.  It hurts to walk, sit...etc.  I tried the clindamycin gel, rx strength hydrocortisone, Benadryl, etc.  Nothing has an impact. 

Uvulitis:  I think this is tied into my Imodium use.  If I exceed one pill a day, I can almost always expect painful uvulitis the next am, which lasts for a day or two.  Very sore throat, swollen tongue, tonsils, and my uvula is 5-6 times its normal size.  When I say ahhhhhh, it is so big it flops up onto my tongue.  It makes people recoil when they see it, so I like to torture everyone and make them look :>  It hits my gag reflex which is not fun.  To combat this: ice cream, vicodin and lots of fluid.  I read this happens to people who go on a big bender the night before and get dehydrated - nothing about a tykerb bender...LOL!!! 

Runny nose:  I bend over to pick something up, the nose faucet runs.  I keep tissues on me at all times. 

Wrinkled fingers:  My fingers are red on the tips and are really wrinkled.  Most days they look like I have been in the pool for hours.  I keep my hands greased at all times with jergens shea butter lotion and keep as hydrated as possible.  Some days this doesn't help, but usually does.  I read this is caused by dehydration, too.  If I drink anymore fluids I could float away! 

The tips of my fingers are also a little numb - I think it might be the neuropathy caused by taxotere\carboplatin I was on in 2008?

Bladder:  Burning after urination, or feeling frequent urge.  I have had tons of urinalysis tests done and do not have a bladder infection, but if I do not keep super hydrated I can plan on these SE.  I try to keep myself flooded so I don't experience this problem.

Nails:  Toenails and fingernails now love to break off below the quick.  Whole sides of my toenails fall off and when they grow back I get ingrown toenails.  My doctor said I should cut them straight across......seriously - I know that!  The darned things are breaking off - I don't even need to cut them.  I have also had an ingrown fingernail - I never heard of such a thing!  I got an RX for clobetasol (strong hydrocortisone) which I put on the area to help swelling.  I also put my clindamycin gel on there to help with any infections. 

Finger and heel skin splits: Tykerb likes to make really painful splits on your fingers and heels.  I have a bottle of super glue with me at all times so I can glue those shut - boy does that help!  

Slow hair and nail growth:  The hair on my head has grown about 2 inches in the last year.  Slow indeed :>  My eyebrows are finally almost all back in, but my eyelashes are very short and stubby and have fallen out twice since my chemo.  I have been using an RX for latisse for the last month and hoping it will spark some growth for me.  It's amazing how much stuff eyelashes keep out of your eyes!  

Muscle spasms:  I get awful muscle spasms.  Sometimes when I yawn, I get a big one in my neck.  They happen in my legs, hands, feet, etc.  My onc suggested I take calcium and magnesium supplements - that has helped relieve the problem a great deal. 

Swollen ankles:  This is a problem off and on, especially when I travel.  If I am in a car or plane for any length of time, my ankles blow up.  Rest and elevation are the only thing that seems to help. 

Blood in nose:  I don't have bloody noses, but I do have blood in my nose every day and it is on my tissue sometimes when my nose runs.  I put Vaseline in with a Q-tip or spray in saline and that seems to help a bit.

Yazmin: For the fingers and feet, give aloe vera gel a try. You really have to work it in, but in a month or so you should even see improvement in the nails. Get the fragrance-free clear gel in a tube, I find it at CVS near the suntan creams.

My dad had success with this gel years ago for his Shingles rash and I'd suggest that you try it on your thigh rash. It is hard to find a "fragrance free" aloe gel but check carefully at CVS and Rite Aid and make sure that Aloe is the first ingredient.

"Free and Clear" detergent only for the laundry, and 1/2 cup Distilled White Vinegar for your softener. Bounce and Downy etc will aggravate any rash, but the vinegar will actually help. Some rashes I apply vinegar directly, blotting....but "dry" rashes do best with the Aloe Vera.