Cry for help from the Netherlands!

nathalie_terol

I am looking for ANY information on treatment of metastases through Breastcancer. This is my first attempt outside of Europe. I hope somebody can point me in the right direction.

My mother (54 years) was diagnosed with breastcancer in february 2000 after she had discovered a small lump in on of her breasts. Within 3 weeks she had an operation to remove the lump, her lymph glands in her armpit were ok. In the summer of 2000 she had radiotherapy on her breast (36 treatments) to be on the safe side. She had regular check-ups since (every 3 months) and seemed to be doing wel. In May 2003 she was suffering from severe stomach pains, an ultrasound was made but nothing was found, the stomach pain occured every 6-8 weeks. In May 2004 she consulted her docter again, still suffering from the stomach pains, this time the ultrasound showed bad news. After several MRI, scans and a biopsy she was diagnosed with metastases in her liver and lymphatic system. Non curable, and a life-expectancy of several months up to five years.

She was instantly given Femara-tablets (hormones) to slow down the process of spreading. This seemed to help for appr. 8 moths. In March 2005 she started to loose weight rapidly and her condition was getting worse by the day. At the end of April 2005 she started chemotherapy (F.E.C. treatment) throught a drip every two weeks untill the end of August. Eventhougt she felt poorly throughout, the chemo did its job and here condition improved very much. She regained weight and was in good condition. After this treatment she was put on Tamoxifen. This again helped her for 9-10 months, but then had to stop as Tamoxifen didn't do much for her anymore, her tumor-markers went up and her belly started swelling up from the lymph glands again. In august this year she started with Faslodex injections, once every four weeks. She has had two, but after her check-up last week, she was told the Faslodex is not helping her in anyway. And that is it...there is no other treatment for her anymore, or at least, not available in the Netherlands or Europe, apart from chemotherapy which will only be done when she starts deteriorating badly, just to give her a few extra months. She is now not given any medication anymore.

At the moment she feels ok and actually is in great condition, still able to do whatever she wants and has no pain and leeds a pretty active life. It is therefor that we are looking for any information abroad on medication or treatment/therapy that not yet available in Europe. In Europe, the US are known as the pioneers in medicines and treatments. Many medicines have been used succesfully for years in the US, before finally making it to Europe. This has something to do with European Law (basically, the US is testing new medicines carefully for years and than, instead of trusting the US testing, European Law requires testing for years again, but now under European Law....)

Since the Dutch Cancer Institute is not giving any information on medication used abroad we are seeking help. We are looking for any information or experiences from people in the US who have the same form of cancer metastases. My mother had breastcancer before her menopause and her most recent scan of her bones (august 2006) showed they were clear. She has 3 tumors in her liver (which are operable, but doctors here do not want to do that because of the metastases in her lymphatic system). She is not in any pain, just very tired.

Maybe somebody can help us to get some information or names of medication (other than the ones she has already had) or anything? We would be very, very gratefull for any help. We are very aware that there is no cure for her, but are just looking for something to slow down the process and give her a few more good years for the spend with us and especially my two young kids, who adore her! If you need more information, please do not hesitate to email me at: nathalie_terol@zonnet.nl

Thank you very much!
Nathalie Terol(30)

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 700 Location: UK

Hello Nathalie - try posting this information on BreastCancer.org 's forum for Recurrence and metastatic Disease, and also on bcmets.org - both are active and knowledgable.

It is difficult to say what might work for your mother. It looks as if her cancer is hormone positive, but it would help to know for sure; and also if she is HER2+ or not.

As to other means of helping, Switzerland is very advanced in the use of Iscador to build up the immune system - http://www.iscador.com/ for more information (there is a Dutch practitioner given on their website)

Also, look into supplementation such as Coenzyme Q10.

Hope you get other responses soon.

Cindy · Senior User Joined: 01 Dec 2004 Posts: 156

Sorry to hear that your mum is having these issues. I don't know of all of the chemos that are being used, today, as they come out with new meds all of the time. I finished my treatment over three years ago.

Some meds they do use here, with good results are:

Adriamycin and Cytoxin (AC)
Taxotere
Taxol
Abraxane
Avastin

Some natural things you may look into is Celle Forte IP6 with Inositol Hexaphosphate.

Change her diet to lo-fat intake and complex carbs (veggies, but no corn or potatoes or carrots...or any veggies that are full of sugar). No fruit that contains a lot of sugar, such as bananas, watermelon, cantelope, grapes, etc. She can have strawberries. She will lose weight on this diet but what you are trying to do is to eliminate EXCESS/UNECESSARY amounts of glucose and arachidonic acid in the body, which is cancer's fuel. There has been some research using 3-bromopyruvate, which blocks glucose from entering cancer cells. Once the glucose was blocked, the cells began to die, immediately and the tumors died out. I would eliminate meat and have her eat only fish, for the omega 3. Cold water salmon would be perfect.

Other natural things to try is to eliminate excess inflammation from the body: ginger, curcumin, garlic, omega 3's, bromelain, etc.

Go to my webpage: www.bcsisters.org/forum and scroll down to "Your Research Info". Open it and scroll down to "My research findings, Part 1 and Part 2". There is a whole write up on inflammation in the body and cancer. It is very long, but it may be useful to you.

Do as much research as you can to find out what you can do to help your mum. I would definitely look into the IP6. Google Dr. Shamsuddin and read about his research. Not saying that all this stuff is going to do anything, but I can just put forth the things I have found during research and hope they may help.

I wish you and your mum well. Sending prayers your way.
_________________
Where is the cure???
www.truefacesofbreastcancer.org
www.diepbreastreconstruction.org
www.bcsisters.org/forum
www.mybreastcancerstore.com

cjago · Regular Joined: 14 Jan 2006 Posts: 42

I'm being treated for metastatic breast cancer in the UK, until recently at the Royal Marsden which you may know is the top cancer centre in this country and one of the top world-wide.

I don't think it's that likely that there is any very successful drug licensed in the US but not in the Netherlands. I don't know much about the Netherlands' drug regime, but certainly there is nothing non-experimental (ie mainstream) in the US which is not being done in the UK.

Apart from that I can only mention things from my own experience that you could follow up. Firstly, I have had radio-frequency ablation of a liver metastasis. This is a much less invasive alternative to liver resection (surgery); a needle is inserted through a very small incision, guided by CT, and the tip heated to kill the tumour, all under general anesthetic. It is normally only done for peeople who have single or anyway few liver mets and perhaps those are growing quite fast, and no other disease currently causing serious symptoms. Anyhow, it only takes a short while to recover (perhaps a week? mainly from the general anaesthetic, as long as the patinet is in reasonably good condition.

The other point is, are you sure chemotherapy is really being saved up just for the last few months? There are a number of other chemo regimes which could be tried and which might produce more than "a few months" gain, but it is sensible not to use them until the patient has symptoms which affect their lifestyle (and perhaps life). There is nothing to be gained from doing chemo whilst one is still feeling reasonably well. Several of the drugs mentioned by Cindy are chemotherapy drugs; I would be very surprised if, for instance, the taxanes (Taxol and Taxotere) are not routinely used in the Netherlands). I am in the middle of 6 cycles of weekly Taxol (paclitaxel) at the moment; I was NOT given it (by the Marsden) until I developed kidney complications from a pelvic mass (and subsequently was found also to have a pancreatic met). It isn't (so far) too onerous, unlike the epirubicin/cisplatin/capecitabine I had a few years ago - but it isn't as good as not having chemo at all!

BTW, if you wanted a second opinion, the Royal Marsden (in London) is a lot closer than the US and (IMHO) would be just as good.
_________________
adenocarcinoma of the breast, now widely metastatic (stomach, liver, pelvis, pancreas, bones, skin)
survived 11 years so far

NH4life · New User Joined: 15 Apr 2007 Posts: 7

Hi Nathalie, hows your Mom now? for whatever this is worth, i'm sahring with you this website on the body's own immune system and its capacities to prevent illnesses and diseases including those that we dread, or help the body recover from infections of these diseases already. i hope you find something helpful from this site
http://www.natureheals4life.bravehost.com/TFandCANCER.html
I am a believer in nature's own ways of preventing diseases or allowing the body to recover from them. it can comfort me to think i could not be susceptible to later discoveries that this drug or that has been found to cause another disease and has been ordered recalled from the shelves!

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