View Full Version : suggestions for treatments that have worked

11-10-2006, 01:10 PM
Looking for suggestions of treatments that have worked for a friend with IBC.

About my friend: IBC, HER2+++, ER/PR-, recent CA 15,3 was 50, (it’s been much higher at different times and I think 30 was the lowest at one point) still on Herceptin, done taxotere, Gemzar, cisplatin, navelbine, Caelyx, and may have done some others also. Trying to get into a Tykerb trial but they do monthly biopsies and think her tumors are too hard and dangerous to biopsy – however her oncologist, who is also a radiologist and head of a cancer hospital, thinks they are easy to biopsy???? But the trial people are the only ones who can do the biopsy so now not sure she’ll be taken.

Does anyone know of trials that check progression by scans instead of biopsies or do they all use biopsies for Tykerb? How can I contact the makers of Tykerb?

Any suggestions for me to help my friend?

<o>From what I understand, she has tumors over her lungs. </o>

What follows is the last scan for her which I have badly translated from French to English:

Oncologist/radiologist summary:
From thorax scan: progression at the parenchymatous level of nodular lesions bilaterales invading different lobes the largest is on the right 14x11.5 on right superior lobe. The left has 10 formations on the superior lobe the largest is 14x12mm plus a lesion in the gutter (gouttiere) costo vertebrale of 18x13x31mm<o></o>
radiologist Dr. Dubruque who did the scan:

conclusion: numerical and volumetric progression of parenchymatous lesions pulmonary bilaterales.



11-10-2006, 03:08 PM
You can obtain information about Tykerb and its trials by contacting teh National Organization for Rare Disorders, Inc (NORD). Call 1-888-489-5372 and tell them you are interested in receving information about the Expanded Access Program. They will then send you a complete packet of information. I called and had my packet within a few days.

11-11-2006, 03:22 AM
Thanks Kate for this info. Hopefully I can call a toll free number from France, if not I may write again to ask someone to call and get me a non-toll free number.
thanks again,

laura v
11-18-2006, 11:43 AM
Hi. I have a sister that had stage 4 Her2 + Estrogen - IBC that had also spread to her lymph nodes and liver. She followed her doctor's protocol of taxol and herceptin, but also found out that ground flax seeds and turmeric have been shown to cure cancer in some people. Since her doctor gave her very little hope and made her feel she should get her "affairs in order", she thought she had nothing to lose. She started adding 4 tbls. of freshly ground golden flax seeds (you have to grind in a coffee grinder and use within 15 minutes) to a smoothie (yoghurt, fruit, orange juice), and started taking turmeric supplements twice a day. In 2 months, her cancer had shrunk by half, and now, 6 months later, she is completely cancer-free. She found out that there is probably a synergy between flax seeds and herceptin that made this miracle possible. She doesn't know if the turmeric helped or not. Her doctor can't believe it. He said he's never seen anything like this happen. She hasn't told him yet about the flax seeds, but is going to very soon. She now doesn't have to have any surgery, and is on an every 3 week herceptin treatment. No more chemo. needed. Hope this helps. By the way, GOLDEN flaxseeds have been the only type to be effective. Regular flax seeds are not nearly as potent.

11-18-2006, 01:13 PM
thanks. I'll let her know

11-21-2006, 10:28 PM
The link below takes you to an article written by Dr. (Dr. in Immunology) Steve of Grouppe Kurosawa explaining why golden flaxseed helps to fight cancer.


Laura, is Linda mentioned in this aritcle your sister?


11-26-2006, 02:19 PM
My daughter who has pretty much run the gamut of treatments, was given this drug (which not much has been written about) and her scans last week were AWESOME. All the liver and lung tumors from the original IBC have shrunk.
This is the first time in a year anything has even touched the progressively growing tumors.
Look up HALICHONDRIN on Google. It is fascinating what mother nature brings to our needy table.

11-27-2006, 10:31 AM
Thanks I'll tell my friend abou this. she sees her oncologist tomorrow so it's perfect timing.
I wish your daughter continued good health and you strength.
many thanks

11-29-2006, 10:22 PM
I just wanted to comment on the tumeric again. My oncologist told me that have are doing research on tumeric at MD Anderson and that it is showing promising results. She told me it would be fine for me to take it. My results have been good. I don't know for sure if the turmeric has helped or not, but I am going to continue to take it. I will probably now add golden flax seeds.

12-03-2006, 05:09 PM
Hi Atee,

So happy to read your great news on your daughter. I looked up Halichondrin
on google as you mentioned. I have a question, is your daughter in a trial,
or has she been given the drug off label?

Wishing you continued good health.