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type of treatment --capecitabine

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    Posted: Aug 06 2009 at 12:51pm

Summary of my situation: (and QUESTION at the end)

 July 1996 -grade 3 tumor..estrogen negative..right masectomy/chemo of 3 drugs =adriamyacin--five f-u--cyclo.../radiation/ tamoxifen due to some lymph node involvement and oncologist's decision
blood tumor marker went from 60 down to 17
2006 --blood CA 15-3 keeps rising each year...fullness/swelling  gradually develops around pectoral muscle on masectomy site...thought to be lymphodema-- like right arm
Jan. 2008/ Feb. 2009 -- diagnosis of infraclavicular recurrence of those microscopic cells from probably 1996 or earlier --triple negative
March 2008 --chemo of Docetaxol......then Sept-Oct. =radiation
CA 15-3 goes from 60 to about 26
June 2009...CA 15-3==53/ now 60 -July 31
CT shows some increase of cells
**still probably inoperable due to location --close to collar bone/pectoral muscle/rib/arteries -BUT will keep consulting breast and thoracic Drs.
 
**TREATMENT of oral capecitabine....and monitor.....
HAS anyone done this?
very knowledgable oncologist...but I'm in CANADA!!...so.....
  
 
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Antitumor Activity in Breast Cancer

Capecitabine in Previously Treated Patients—The efficacy of capecitabine was evaluated in a multicenter, phase II study of 162 patients with paclitaxel-resistant metastatic breast cancer.[29] The majority of patients (91%) had been treated previously with an anthracycline. The study was nonblinded and noncomparative.

Patients were treated with oral capecitabine at 2,510 mg/m²/d divided into two doses for 2 weeks of each 3-week cycle. The dosage was adjusted for adverse events, and the duration of treatment was dependent on disease progression. Patients with an objective response continued treatment until disease progression. The primary end point was an objective (complete plus partial) response. Additional end points included duration of response, time to disease progression, survival, and clinical benefits (ie, Karnofsky performance status, pain intensity, analgesic consumption).

A total of 135 patients had measurable disease and could be assessed for a response.[29] Of these, three (2.2%) achieved a complete response, 24 (17.8%) achieved a partial response, 54 (40%) had stable disease, and 46 (34%) had disease progression within the first 6 weeks of treatment. The median duration of response was 241 days. A retrospectively identified subgroup of 42 patients (31%), who were resistant to both paclitaxel and doxorubicin, had a response rate of 29%. When results from all 162 patients (measurable disease plus assessable but not measurable disease) were combined, the median time to disease progression was 93 days. The median survival was 384 days.

The clinical benefits of capecitabine were assessed in 147 patients. Of these patients, 29 (20%) showed improvement in at least one clinical parameter, with stability in the other two. The clinical parameters were stable in 44 of 147 patients (30%) and deteriorated in 74 of 147 patients (50%). These results formed the basis for the Food and Drug Administration’s approval of capecitabine for the treatment of women with metastatic breast cancer resistant to paclitaxel and/or an anthracycline.

Capecitabine has been compared to paclitaxel in 44 patients with metastatic breast cancer resistant to anthracyclines.[30] In a randomized phase II trial, patients were treated with either capecitabine (2,510 mg/m²/d in two doses on days 1 to 14 every 3 weeks) or paclitaxel (175 mg/m² on day 1 every 3 weeks). The response rate to oral capecitabine was higher than the response to paclitaxel (36% vs 21%); the median time to disease progression was similar (92 vs 95 days).

Dear Janinvan, if you decide to go with Xeloda - ask for the week on week off regimen - I understand it is easier to tolerate......and has your oncologist considered Carboplatin?

 
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote janinvan Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2009 at 12:50pm
Connie...thanks!...I may add to this later. Do you live in Western...eastern,..or central Canada? I take approx. 1650 mg.each a.m. and p.m. with food...(10 -12 hours apart)
my regime is 14 days "on"...and 7 days "off"
Janice
Do you kinow anyone with this 'soft tissue" infraclavicular type?
Is Canada worse off for treatment options/knowledge?
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Dear Janice,
 
British Columbia has the best breast cancer care in Canada
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Cancer care in Canada needs overhaul, report says

Last Updated: Tuesday, February 12, 2008 | 4:44 PM ET

CBC News

The way Canada deals with cancer is haphazard, outdated and needs to be overhauled, says a report Tuesday by the Cancer Advocacy Coalition of Canada (CACC).

The%20report%20finds%20that%20more%20money%20needs%20to%20be%20spent%20on%20the%20prevention%20of%20cancer,%20with%20only%20six%20per%20cent%20of%20research%20funds%20currently%20going%20toward%20this%20initiative.%20The report finds that more money needs to be spent on the prevention of cancer, with only six per cent of research funds currently going toward this initiative.
(CBC)

The 10th Report Card on Cancer in Canada finds that cancer care is inconsistent, with disease outcomes hinging on where a patient lives.

"Tell me your postal code and I will tell you your chances of surviving cancer," said Dr. William Hryniuk, past chair of CACC, in a release.

The report focuses on the lack of funding for the prevention of the disease, the need to streamline how clinical trials are run, the need for increased nursing, and better use of technological advances in treating cancer.

'Tell me your postal code and I will tell you your chances of surviving cancer.'—Dr. William Hryniuk

What Canadians pay for cancer has increased across the provinces, the report finds, with Ontario and Quebec residents picking up a greater proportion of drug costs. In Ontario, the cost of cancer drugs borne by the private sector increased to 40 per cent in 2006 from 31 per cent in 2002. And in Quebec, that figure rose to 39 per cent in 2006 from 28 per cent in 2002.

At the same time, provincial coverage of key cancer drugs is spotty, with some provinces covering the medications and others refusing to do so. For example, Ontario funds the lowest number of the 42 cancer drugs studied in the report, while B.C. funds the greatest number.

"Only a minority of these drugs are actually available to cancer patients who need them," Dr. Kong Khoo, an oncologist based in British Columbia, told CBC News on Tuesday. "A major problem is the cost of these drugs."

The authors recommend a national catastrophic drug strategy and drug plan be established, as well as Canada-wide guidelines to speed access to these medications.

"I think we are making progress," says Khoo. But unless we change how we do business and change how we deliver cancer care, we're not going to change the outcomes of the patients who are going to get it."

Research changes required

The report finds that more money needs to be spent on the prevention of cancer, with only six per cent of research funds currently going towards this initiative. Conversely, 16 per cent of funds are allocated for treatment.

It also states that although Canadian cancer research associations are sharply focused on solving clinical problems, there is a further need to ensure that researchers' priorities are aligned with societal needs when it comes to cancer research.

"Given the results of the present survey of research-dollar allocation, and the one undertaken three years ago, it would appear that the factors driving research continue to be predominantly those of the researcher themselves," the authors say.

Specifically with breast cancer research, the authors of the study feel that if more research findings on late-stage cancers were applied to early-stage cancers, the time it takes for new drugs to become available could be shortened, saving thousands of lives.

"At present, it takes a minimum of 10 to 15 years for a new agent to reach the clinic from the laboratory bench, in many cases 15 to 20 years to become fully characterized, because a sequence of at least four, and usually five types of trials are required for each new drug," reads the report.

"With suggested reforms calling for enhanced efficiency, the time period of testing could be reduced from the present 10 to 15 to less than five years."

Young need more resources

The report finds that young people between the ages of 15 and 39 have a disproportionately high death rate due to cancer, which the authors feel needs to be better addressed by the health-care system.

According to the report, 6,500 young adults are diagnosed each year in Canada with some form of cancer. But between 1975 and 1997, cancer patients between 15 and 39 have seen the smallest gains — and in some cases declines — in five-year survival rates.

The authors say this is caused by a lack of research into the behaviour of cancerous tumours in younger people. They believe the problem is compounded by a lack of support for the unique issues experienced by this demographic, such as a lack of peer support and fertility concerns.

"A combination of factors may be conspiring against this patient group to tip the scales against their odds of survival," reads the report. "Inadequate participation in trials, lack of age-specific protocols, a different physiologic milieu, reduced treatment dose intensity, delays in diagnosis, and treatment inappropriate for their particular malignancies may all be operating."

The Cancer Advocacy Coalition of Canada is a non-profit organization that focuses on citizen advocacy.

 

.
"There's a west-east gradient in cancer mortality," said coalition spokesperson Dr. William Hryniuk.

"B.C. has the best results, spends the most money per capita on cancer control. And the Eastern provinces have the worst mortality and spend the least amount of money on cancer control."

Kelowna oncologist Dr. Khong Khoo, who contributed to the study, says one of the reasons for B.C.'s success is access to new drugs.

"We studied 24 individual separate drugs, and of those drugs that we looked at, 21 of those 24 drugs were available, paid for and provided through the B.C. Cancer Agency."

It's up to each province to decide whether to pay for new drugs approved by Health Canada.

I live in Ontario.....if I were to go on Xeloda -  I would have to pay for it.   Ontario finally agreed to pay for PET scans by their criteria 170 requests were
made and 67 were approved.  I paid for mine in 2007 when I was first diagnosed (Ontario was still 'studying' them to see if they were effective). 
 
Connie
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Hi Connie: I am from Nova Scotia and just started my chemo for TNBC last Thursday. TC x 4 for me and I did have allergic reaction at first.  I am still feeling like I am someone else (today not as bad) but totally out of body experiences. I was never one for taking medications and these are certainly potent. On CT scan they saw two more spots under both pits L 2.3 and R 2.7cm.  We have opted for PET Scan to keep an eye on them and continue chemo for now.  It is so uncertain to have this "Triple Negative" diag. - and I am not at all sure where it came from? Any clues? Helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2009 at 5:09pm
Dear Helen,
 
The breast cancer experience is almost like an out of body experience....the medications that they usually given as premedications so that you do not have a reaction to the chemotherapy (possibly the dexamethasone or Decadron) are steroids and they can make you feel 'spaced-out', they can energize you, make you restless and all sorts of things.  This will all be a distant memory when you are finished treatment.  Be kind to yourself, rest, keep very well hydrated to flush the chemotherapy through your body.
 
If you have time - read through the polls and surveys.
 
Actually, if they are lymph nodes and they shrink - that is news that the chemotherapy is working and killing the cancer cells.
 
Now that you have found this forum, you will never be alone with your side effects or your questions.....you will never find a more informed, kinder group of sister advocates than on this site.
 
Helen, researchers are very interested in our TNBC.....much focus is directed at finding out ways to shut it down. 
 
I am the only case of breast cancer in my entire family (both sides - going back generations).  I never took any hormone pills.  I am not a candidate for breast cancer....and yet I have it. 
 
Do you have surgery or did you have the chemotherapy first?
 
I had a 3-cm left breast tumor and 3 positive nodes in May 2007, followed by mastectomy, dose dense chemotherapy (every 2 weeks) - 4 of AC and 4 of Taxol, then 25 radiation treatments.
 
Connie
 
 
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Thanks for your note and encouragement Connie!  I did have surgery for Left 2.5 cm Quadrectomy with 0/3 nodes in May followed by chemo Taxotere & Cyclophosphamide (Cytoxan) IV every three weeks, then 3.5 weeks radiation.  The two spots they found on CT scan are deep into the pits on both sides so the surgeon could not do biopsy in office would have to have surgery again, I opted to take the chemo first followed by PET scans to check for malignancy on new spots then surgically remove after chemo to radiation on both sides after.  I hope we made the right decision.  I find I am so tired.  Too much to have more surgery right now.  Thanks for asking and being there.  So glad you are doing well!  Helen
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Helen,
 
I had one 'area of interest' in the left axilla (home of the 3 positive nodes) found on PET scan.  I went ahead with the chemotherapy - rather than delay treatment and the oncologist said it goes away with the chemotherapy - BONUS - and if it is stilll there - radiation - and then observation.  Sometimes thinks light up on PET scan that are malignancy. They can biopsy after radiation if they are still there.
 
Since you are on the east coast - oysters/clams - the highest iron containing foods! 
 
After chemotherapy my hemoglobin was 99 - with no iron supplements - just my seafood supplements - I was up to 131 in no time.
 
We have all sorts of tricks to help you.
 
Love,
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote janinvan Quote  Post ReplyReply Direct Link To This Post Posted: Aug 09 2009 at 12:36pm
Connie,....thanks for your info/reply!
 AGAIN.....are you in B.C.?  ( it's a riot re anonymity)
I wonder WHY...when I asked a similar question on the triple negative section of  breastcancer.org --didn't any of the mostly American women answer?
I usually don't go "on-line" with this!
Janice
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Aug 09 2009 at 6:28pm
Jan,
 
I posted I live in Ontario in the last reply, ....I just read all the studies that the government posts regarding healthcare, wait times for surgery, radiation, specialist waits.  I go to Sunnybrook in Toronto and I have the privilege of being a patient of Dr. Rebecca Dent. I am suspecting you may be a patient of Dr. Karen Gelmon.
 
I hope you will forgive my directness but they (on the other site) are probably too afraid to venture an opinion....There are a few ostriches on the site - who never ask any questions of their oncologist, there are a couple of 'let's be positive' groupies that are practicing their cheers (don't want to talk scientific discoveries). There is a moderator over at the other site that bans people for expressing opinions without rhyme or reason. 
 
Also, Jan, on this site we are not segregated according to citizenship....the generosity of spirit and information extended to me over the past few years from my American sisters/brothers has been unbelievable.  The support and caring on this forum comes from all over the world, Americans, Canadians, British, Aussies, Japanese, and others too numerous to mention.
 
Connie
 
 
 
 
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Connie,
 
I am new to this and I am learning to navigate. I am in the middle of my treatment right now. I completed #9 of my 12 weekly taxol on Monday. I will then do 4 of some other kind of chemo at the end of the 12 weekly taxol. I want to say it is FEC. I will do them once every 3 weeks. After the completion of chemo then it is of to radiation. I was dx 4/28/2009 with TNBC. I had a double mastectomy on 5/21/2009 and began chemo on 6/15/2009. I am so afraid of this dreadful disease..... I had a 4.7 cm tumor with 3/13 nodes. I guess I am writing just to get some insight to know IF ANYONE SURVIVES THIS????? I have been lurking on these post and I read ALOT....It seems that you are so knowledgable about all of this. I am 36 years old with ABSOLUTELY no family history and I did the BRCA test and that came back NEGATIVE.....I dont really even understatnd what that means. Does that mean BRCA negative is easier to treat?? I have 3 kiddos and this has just been sooooooo hard..
 
May God Bless Us All
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Aug 12 2009 at 9:11am
Hello Diane1234,

I can feel and hear your fear. I think all of us who have gotten the "cancer" diagnosis can understand your "fear".....

Yes, yes, yes, we do survive. We have our surgeries, our treatments and go on with our lives.

We will never be the same physically or mentally, but other circumstances in our lives (other than cancer) have changed us physically and mentally forever also. We learn to adapt and keep on trucking.... A lot of the ladies on this site have lived for years in spite of recurrence.

It just the stigma attached to cancer.. Just the sound of the word... Just the image of bald heads and other unpleasant things that scare us. It's the fear of wondering how others will accept us, especially our husbands.... The fear of recurrence...

I have been encouraged by the posts of so many women and men on this site.

Keep us updated on your progress and know that you are not alone..

Love in Christ,

Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
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Lillie,
 
Thank you SOOO much for your response. As I lay here in bed and it is 1:31 pm trying to gather strenghth to get up. Unsure if it is fatigue from the chemo or the whole MENTAL thing that goes along with this. My Dr. has not given me any prognosis. She doesnt talk percents. She just tells me that she has (several) TN  patients that had more nodes than I did and they still come see her seven years later. She said I say seven years because that is how long I have been seeing patients here. She tells me Science can tell you one thing but there is this WHOLE other side of things that Science CANNOT explain. I would love to know what my long time survival rate is. I know my BS told me after surgery it was 70%. She gave me that percent over the phone I believe BEFORE the pathology came in and said TRIPLE NEGATIVE!!!!! Atleast that is what I thought. Does anyone know the LONG TIME SURVIVAL?
 
MAY GOD BLESS US ALL


Edited by diane1234 - Aug 12 2009 at 9:32am
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Dear Diane,
 
I have absolutely no breast cancer in my family on either side going back generations! Just me with 1 tumor, 3 positive nodes, 1 mastectomy, chemotherapy, radiation......and in between all of that - I had to figure out where my breast cancer came from and the best treatment available. 
 
It is an aggressive breast cancer and I think you know more than you realize - look how aggressively you have approached your condition.  You hit it hard and spared no mercy - double mastectomy weekly Taxol...and a combination chemotherapy that they are doing trials of at M.D. Anderson (the E is Epirubicin and the A is Adriamycin).  The E in FEC protocol is supposedly easier on the heart.  The A in the FAC protocol is harder on the heart.
 
I can only imagine how difficult it has been for you at times with three children - but I also know how those three children inspire you to keep going. 
 
Being BRCA negative is a good thing - because then you will have less concern about your ovaries and it is not a genetic aspect of your breast cancer.  They tested because you are so young and it is triple negative. I personally think they should test everyone regarding of age if they are triple negative. 
 
 
I do not believe you could have done anything more than you have to treat the TNBC.
 
Now, get yourself on a low-fat diet (apparently for us - eating around 30 g of fat a day - lessens are chance of recurrence). 
 
I cannot imagine a mother of 3 children not running around and getting her workouts (even picking up toys), etc. but 30 minutes of walking a day would help built your strength back after chemotherapy.  (I had to start at 10 minutes and add 5 minutes until I got up to 1 hour a day). 
 
Be kind to yoursel, try to rest,  laugh and enjoy the antics of the cihldren this summer - and when you are tired or not feeling well sitting and spending time with the children - even coloring or watching a video is quality time - so do not feel guilty about not running around to theme parks..... and know you will have your life back once again sooner than you think.
 
Just remember we are always here to offer support.
 
Love,
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote diane1234 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 12 2009 at 9:52am

Connie,

Thank you... Thank you.... I am so fortunate to have this site...I have heard something about the low fat diet.....I will start that. I really have been trying to WATCH what I eat. I just try to eat what I can stand during treatment. I have also heard about getting in that excersise. Although prior to cancer I was VERY active. I have never been a sedatary type person. It does drive you crazy trying to figure out WHERE it came from....I am gonna get out of this bed....and get some things accomplished. I am so sick of CANCER stealing my time...although when you feel crappy it is hard to not let it....LOL.....THANKS TO ALL OF YOU!!!!!!
 
GOD BLESS


Edited by diane1234 - Aug 12 2009 at 9:53am
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Dear Diane,

 
There are some really easy, positive things you can do for yourself...drinking green tea, eating those blueberries, broccosprouts, each day take 2 tablespoons of fresh ground flaxseed (store the seeds in the fridge). Make sure you have your vitamin D3 level checked.  Apparently women with low vitamin D levels need to take the more vitamin D3 to keep the breast cancer cells away.
 
Please know there are women who ate organic, vegans, athletes, nonsmokers, nondrinkers, everything healthy - and they got the same breast cancer!
 
The great news is that TNBC is a huge focus and research is directed at finding out where it is coming from and how to shut it down.
 
One thing you should ask about is taking vitamin B6 while on the Taxol (also it is great for central nervous system keeping us calmer.
 
Make certain you keep well hydrated....push that chemotherapy through your body...the more hydrated with water the better you will feel.
 
Love,
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote diane1234 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 13 2009 at 6:56am
Connie,
 
Thank you so much for this information. When I first started chemo which was on 6/15/2009 I had ordered this product called vemma.....I dont know much about it. I just know I was told a shot of it was pure nutrients. I was also taking extra vitamin C so I would heal faster from the double mastectomy. I was told by my Onc. to stop the vitamin C and do not take anything with antioxidants. She said that all that seems to rebuild cells. She said there is no proof that it will not also rebuild cancer cells. I took that as ok I am suppose to eat crappy??? Just take a standard daily vitamin. I do drink lots of water. Did your onc. ever tell you this? I know that vemma stuff was suppose to have lots of antioxidants. So I DID NOT use it. I do still try to eat well. Again thanks for all your help.
 
May God Bless Us All,
 
Diane


Edited by diane1234 - Aug 13 2009 at 6:59am
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Dear Diane,
 
There is a lot of controversy about the antioxidants during chemotherapy other than from food sources.  I never took anything 2-3 days before or 3 days after my chemotherapy (I wanted that liquid gold to course through my veins and find its targets!).
 
I think we all hold hands and try to find our way out of the dark, scary, dangerous place called breast cancer diagnosis and treatment.  Many times we stumble, someone picks us up, sometimes we see the way when we get lost or frightened because a calming voice directs us to get back on track. We are just like elephants when one of them is sick or injured the rest surround and support her until she is strong again.
 
Eat fresh fruit, vegetables, whole grains, low-fat, more fish than red meats...just the whole alphabet of healthy eating.
 
A - Apple - quercitin, B - Broccoli - SDG (huge breast cancer fighter).  Engage your children into the eating for health game.
 
Do not take anything without talking to your oncologist first.
 
Love,
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote diane1234 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 13 2009 at 1:11pm
Connie,
 
Yes that is what I am gonna do. EAT EAT EAT healthy and get my butt on that treadmill. I am not taking any supplements at this time. I am doing the weekly taxol. I do #10 on Monday. Then I will have 2 more after that. Then I will be off to the FEC.
 
I was lurking on breastcancer.org and I came across a long time triple negative survivor with positive nodes who wrote she drinks a juice every morning. She stated it is hand pressed kale, carrots, parsley, cabbage, and apples.
 
I did some research and those are (cruciferous vegetables) which from what I am learning are good cancer fighters.
 
I am working hard on educating myself. Yes you are right about the elephants. I am learning that this is not a club we CHOOSE to join but once in there sure is alot of support.
 
Engaging the kids in the health game seems like a great idea.
They start back to school on the 19th. Man I am gonna miss them being here with me. Funny how BEFORE the C word I enjoyed the break. Now I simply CANNOT get enough of them.....
 
God Bless,
 
Diane
 
 


Edited by diane1234 - Aug 13 2009 at 1:12pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Aug 13 2009 at 2:50pm
Diane,
 
There are some 'juice/mixtures/concoctions' that I have tried and my husband has made for me....and I cannot quite get down.  Finally he asked if he had made them wrong....? No, I tell him, I don't think I want to get that healthy! Some of those 'green weeds' do not whip up into something delicious. 
 
I was walking my dog and I stopped on the sidewalk and a young mother saw me and said "I am sorry for the noise and splashing"....I told her those were the most beautiful sounds of summer....I had just stopped to hear their laughter and squeals of delight.  She said she was going to remember that the next time she told them to be quiet and stop splashing.
 
Love,
Connie
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