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Question Following the CancerCare Teleconference

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Bunnysmama View Drop Down
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    Posted: Jun 04 2008 at 11:24am
Hi everyone,
 
Did anyone have a chance to listen in on the CancerCare teleconference on TNBC earlier today?  It was excellent and it gave me so much hope that progress is being made in ways to manage TNBC.
 
During the Q&A period at the end, someone asked a question about a specific low fat diet plan that she heard was a way to help prevent recurrence.  I didn't catch the name of the diet and I'd love to look into it a bit more.  Does anyone know what it was?  If so, do you have any thoughts about it?
 
Thanks so much!
Dx 11/06 @ age 37
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2008 at 11:51am
Bunnysmama was't it the WINS study?
Someone correct me please if I am wrong.
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Bunnysmama View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bunnysmama Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2008 at 11:56am
Pam, you're awesome!  That's exactly it!  And I think that's where I was getting confused.  WINS is the name of a study?  I thought the person asking the question was referring to the name of a diet, but maybe that's a part of the study?  My head was swimming with all the information being shared at that point....
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2008 at 12:22pm
Hey ya'll.  I've had a horrific post-treatment headache and just couldn't join the teleconference today.  Do you know if it will be posted on a website somewhere?
 
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2008 at 12:22pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2008 at 12:24pm
Caryn I'm really sorry to hear about the headache.  I don't remember them saying if a transcript will be posted but we'll keep a eye open for ya.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Christie1 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2008 at 5:23pm
Hi everyone,
I also missed the teleconference today as I had to work.  I am really interested to hear what was said.  Does anyone remember the jist of the main points?  If so, please share them with us.  Hopefully, they will post it.
Thanks,
Christie
DX 4/05 WHILE PREGNANT AT AGE 34, 1.9 CM IDC, TN, GRADE 3, BRCA1+, 21 NEG LYMPH NODES, B/L MAST W/ RECONST., 4 CYCLES AC CHEMO, PROPHYLACTIC SALPINGOOPHRECTOMY, MARRIED 11 YRS W/ 3 BOYS, 9, 5, AND 2.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bunnysmama Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2008 at 5:37pm

Pam, thanks for the link.  That's just what I wanted to know.

For Caryn and Christie (and anyone else who's interested), I just posted a message for Haley asking her if there will be a replay made available anywhere.  I'm sure she'll let us know as soon as she can.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Beth Anne Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2008 at 6:36pm
Bunnysmama,
The study and the diet were the same name.... or thats how I heard it.
 
I didn't find the confance had that much new information... Lots of talk about this trial and that, and then a lot of basic information most of us understand already.
 
Beth AnneSmile
Dx 5/07 DCIS Stage3 gr9 A/C x 6, Abrax x 16 Bi-Mass 2/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cookie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2008 at 10:04pm

Where would we find this "specific" diet that is a way to help prevent recurrence? Any info would be helpful.

 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sadie Rose Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2008 at 4:55am
Hi Everyone,
 
Here's some information about the diet.
Reduced Levels of Fat in the Diet May Decrease the Risk of Breast ...
Dec 19, 2006 ... WINS was the first large-scale randomized trial to show that a change in diet can improve breast cancer outcomes in women who are receiving ...
www.nih.gov/news/pr/dec2006/nci-19.htm - 13k - Cached - Similar pages
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sister4ever Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2008 at 9:34am
Does anyone remember the class of drugs the one doctor mentioned that are being tested to reduce recurrence?  Something like Bisofomates (which I know isn't right).  LOL
 
Thanks.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bunnysmama Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2008 at 9:39am
Was it bisphosphonates?  Someone can correct me if I'm wrong, but I thought that was something that's being tested for cancer that has metastacized to the bone.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Adrea Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2008 at 10:20pm
Bisphosphonates are bone strengthening medications. It has been proven that they are effective in fighting bone mets. (That is why we are seeing so many Evista ads) Many women who post here are on them. I do not have bone mets but I am in a clinical trial and taking Zometa. They are looking to see if it prevents bone mets.

We can only hope that this works!!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ruth Quote  Post ReplyReply Direct Link To This Post Posted: Jun 07 2008 at 3:46am
At The Bennett Center in Stamford, Ct. They have done a study of a low fat and high exercise  regime and have found that it helps to prevent the reoccurrence of Triple Negative cancer.  My oncologist is all for this and was very happy when I mentioned that on June 4th this was brought up.
 
Everytime I see him, he is also happy that I have not put on any weight.  So all of you, do try this, it cannot hurt. 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote billie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 07 2008 at 8:35am
Hi Adrea and ladies,  I feel that I have to mention this.
  When my sister and I went to her first oncology visit to discuss her treatment,he went over the meds that she was taking.He came to the part where she had been on evista for the last 4 years,and his remark was this.I want you to stop evista right now and get on something else(like fosamax or something like that)
 If I remember correctly,it was because of it contains hormons.We both are pretty sure that  that is what we understood him to say.
  So she immediatly stopped and when she called her primary dr. for a different prescription for her bones,her primary said  to her.I will not prescrib a new prescription at this time,come see me when you finish your chemo.We feel almost sure that that may be due to fear of a law suit just in case something should go wrong.
  And then ,in our research on the internet one day we happen to read that,under no circumstances is a person receiving chemo to stop their taking of prescriptions for their bones.That, it is essential that they continue because of bone loss due to chemo.After we read that,my sister called her chemo Dr. and guess what.He was infuriated with the other Dr.for not giving her a new prescription.He called him himself.So she is now on the 1 a week fosamax.This is a prime example as to why these ladies say on almost all of their posting.You have to take some responsibility for yourselves and research,research,research.
  What I am suggesting in this post is that if you are on evista,you might ask your onc. again about taking it and what my sisters onc. may have meant by his remark and suggesting that she stop evista. And by no means do not stop until you are at least given a new prescription of something for the bones.   Lots of HuGGGGGS Billie posting for my sister Betty.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote billie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 07 2008 at 8:39am
Hi sister4ever,Please let me know if anyone should post on drugs being tested for recurrence.Thanks  HuGGGGGGGs Billie for my sister betty
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Joan2844 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 18 2008 at 6:12am
I agree with the comment that little new information was shared on the conference. I am glad trip-neg are receiving so much research attention, but I thought the conference was a mini info-mercial for clinical trials.

Still, I did learn somethings. I've read a lot about p53, and have been frustrated that no one tests for that in pathology. But, the researchers implied that even once it is found, no one knows how to treat it. That was new news to me.

The conference did not mention a new drug that I've heard about for trip-neg -- it is called Ixempra (ix-em-pra). Google the drug -- combined with Xeloda, it has had success against triple negative.

The other new news (June 2008) is about a bone building drug called Zometa. Again, google this (use Google "News") and you'll find new research that Zometa can help reduce bone mets by 33%. The study was done on women who had hormone based breast cancers, but my onc thinks it could benefit all women in terms of protection against recurrence.

Thanks for the link about WINS -- I plan to look that up next and start doing my best to stick to it.

And, I didn't realize that chemo could cause bone loss -- that really scares me b/c I haven't done much to protect my bones and I've already been on lots of chemos. Sounds like there could be a strong connection there -- drugs they give us to fight the primary cancer make our bodies (bones, liver, kidneys) weaker for errant cells looking for a place to grow.

Keep yourselves healthy ladies -- our bodies are assaulted first by the disease and second by the meds. We need the meds, but we cannot become lazy or complacent.   
9/06 Stage2B. Pos Nodes; Neg BRAC; TAC/Lumpectomy/Rads/Xeloda.
4/08 Local Recurrence; Mast w/ Latissimus Flap;Taxol/Gemzar/Carbo. Zometa.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Flasparr Quote  Post ReplyReply Direct Link To This Post Posted: Oct 27 2008 at 12:56pm
I was initially staged 3B, but the "spots" on L1 they saw and interpreted as age degeneration and trauma insult from a scooter collision when my husband tried to teach me to ride the damn thing.  AFTER my surgery, 6 tx of ACT and radiation twice a day M-F for 6 weeks, my ONC did a restaging PET.  The "spots" were glowing brightly and larger than the initial one in 9/07.  MRI was done to confirm and indeed, it is metastasis.  We did 4weeks of radiation, and then started Zometa every 4 weeks.  It is a bisphosphonate that inhibits osteoclasts (bone destroying cells) and osteoblasts (bone creating cells) so the cancer cells don't develop (angiogenesis, or blood supply to a tumor,  is inhibited).
 
I have had nothing but trouble since I started the Zometa.  I have symptoms of calcium deficiency, despite taking a calcium supplement and vit D plus a multivit.  I am going through increased back pain because the tumor that radiation killed is no longer supporting the vertebra and I have lost 1 inch in ht.  The periosteum of L1 is now bulging when there is standing or sitting upright, inducing the pain.
 
I am dizzy, have double vision, poor balance, fatigue, sleeplessness, funky tastes in my mouth, a sore tongue, as sensation that I have popcorn nulls sticking in my gums, increased blood pressure, strange tasting food, a burning tongue and other not so fun problems.  I have had two doses.  I am not an early stage cancer, where the literature recommend it.  I am going to tell my onc next week that I don't want to take any more...the side effects just start to diminish a little, and it's time for another dose.  No chemo caused near the problems this does, and it's not considered chemo!  I am going to ask him about CISPLATIN, that I didn't have, and is now recommended for triple negatives. I might investigate an oral bisphosphonate like Boniva and see if that is less caustic to my system.  My scans have shown NED since I finished the radiation on L1.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 27 2008 at 2:23pm
Hi Flasparr,
 
My goodness you have had a horrible time with the Zometa.  I feel so bad for you.  I would like to congratulate you on having Ned with your scans, that is fabulous!
 
I wish you luck in trying the Cisplatin, certainly your Onc would understand?
 
Let us know what you find out and hope you are feeling better now.
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