7 year remission is over.....

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Denny123
Denny123 Member Posts: 1,886
edited June 2014 in HER2+ (Positive) Breast Cancer

But fun while it lasted. 

Was Stage 4 from the get-go with liver mets.  Gemzar and Herceptin put me in remission 7 years ago and I have been on Herceptin every 3 weeks since.

Pet shows 2 cm lymph node behind sternum, impossible to biopsy.  CA 27-29 was 20, though.

Will start on Aromasin when pharmacy gets it in and have to make sure that Medicaid covers the high co-pay.

Onc wants me to start the WINS very low-fat diet because I am an easy 30 pounds overweight. I am kicking myself for letting myself go, and also for asking for scans only once a year instead of every 6 months.

So I am baaaaack!

Denise

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited July 2011

    Awe Denise don't you just hate that!   Sorry your good run has come to an end and good luck on the Aromasin.  There are plenty of us doing the hormonals and having good success with them but of course, like all meds, they do come with certain SE's hopefully the ones that visit you do just that.....just visit and leave.

    Love n hugs.  Chrissy

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  • Denny123
    Denny123 Member Posts: 1,886
    edited July 2011

    Thanks Chrissy,

    I volunteer counsel for Reach to Recovery for ACS for western PA, but have had no experience with hormonals.

    I have always said that I have had lots of experience with everything but lumpectomies, so here is my chance.

    Denise

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited July 2011

    The hormonals are pretty good but like everything we all react differently.  I have had Arimidex and I felt absolutely terrible but didn't understand how bad until I was changed to Femara.  I have found that Femara for me is a bit of a doddle (easy) and so far is working well.  These two I have mentioned do not have a steroid in them but one of the SE's is weight gain but the Aromasin does contain a steroid component so unfortunatey it's going to make your weight loss even more difficult.

    I haven't heard of the WINS diet, can you tell me a little about it as it may help me loose some of the excess that has gathered in all the wrong places.

    Love n hugs.  Chrissy

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  • Denny123
    Denny123 Member Posts: 1,886
    edited July 2011

    Hi Chrissy,

    With the WINS diet, you count fat grams.  Suprisingly, white bread is lower than whole wheat bread.  I have been avoiding bread all together, but with only 1 gram of fat-it is okay to eat.  Of course, I will opt for whole wheat. Pretzels are 0 grams.

    I am to stay under 33 grams of fat per day. 

    I saute my fresh veggies in olive oil but 1 tsp of olive oil is 4.5 grams of fat!!!

    But, of course, butter is also high.  I won't eat oleo because of the chemicals and I won't eat anything with artificial sweeteners either.

    So I find it to be a tricky balance now.  However, I can now see what I have been eating, which I thought was very healthy, was keeping my weight up.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited July 2011

    That diet sounds interesting but I don't think I could do it...lol....I like my butter too much but I don't eat many nuts not breads but I do like a piece of cake so I don't bake cake often because I have to eat it! 

    Is the diet written somewhere on the net do you know?  I think I'll go and have a look.

    Let me know how it goes for you.

    Love n hugs.  Chrissy

    I just did a search and came up with nothing.  Do you know what the letters stand for?

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  • Denny123
    Denny123 Member Posts: 1,886
    edited July 2011

    Hope this link works....

    http://www.aicr.org/site/News2?abbr=pub_&page=NewsArticle&id=8995

    It is Women's Intervention Nutrition Study.

    The link explains the study and it does make sense.

    I just bought a fat gram counting book on eBay for $5 total. 

    It is called "The Everything Fat Gram Mini Book". I can access the charts on my Droid cell or online, but I think a book would be easier to use to look up foods.

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  • Beesie
    Beesie Member Posts: 12,240
    edited July 2011

    Denise, I'd like to say that it's great to see you on the board again but it's not - not under these circumstances.  I so sorry to see hear that you are out of remission.  Crappity crap.  

    Let's hope that the Aromasin is just as effective for you as the Gemzar and Herceptin have been for the past 7 years.

    Sending you (((hugs))) and strength and lots of positive vibes.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited July 2011

    Thanks for the link Denise I'll definitely be checking that out.

    How are you doing today?  Hope you are giving yourself the time to enjoy your celebration weekend with family and friends.  Did the Pharmacy say how long it would take to get the Aromasin in?  Hopefully not too long and you can get the copay covered so you can start.  I think the waiting for things really sucks......I don't know about you but I'm a bit of a lets get it done type of person and I find having to twiddle my thumbs while waiting has a tendancy to make me a little impatient.

    Love n hugs.  Chrissy

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  • Denny123
    Denny123 Member Posts: 1,886
    edited July 2011

    Hi Chrissy,

    I am fine, thanks.  My daughters are both busy and I am fine being here by myself.  I have a store on ebay with over 700 items (mostly clothing) listed and it keeps me very busy.

    ebay has been a God-send for me because it keeps my mind off myself.

    The pharmacy should have the Aromasin in on Tuesday.

    Take care,

    Denise

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  • bbburns
    bbburns Member Posts: 4
    edited November 2011

    Denise, I am wondering how you are doing. I was diagnosed Sept 2009. I had a masectomy and 6 months of chemo with herceptin. I decided not to do the herceptin anylonger and did fine for 7 months. At that point the tumors returned. i took an additional 4 months of chemo and after being off for 6 months it came back again. The doctor is telling me that there is no cure for my cancer but they can manage it with chemo and once one drug quits working they can put me on another so forth and so on. I am feeling so lost as to what to do! I have had several people tell me to go for alternative treatments in Mexico however I can not find anyone with a long term testomonial of being cancer free. What is your doctor telling you now? Have you decided on any treatment or have any ideas of alternative treatment? Thanks for sharing.

    Barbara

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  • fightn4fam
    fightn4fam Member Posts: 48
    edited January 2012

    Barbara (bbburns),

    Your story touched me and so I had to respond as soon as I read it.   I have to tell you of a true story. So here it goes:

    My hubby's aunt was diagnosed with a very rare formof cancer, it was not a bc, but none the less a cancer.  She was in Florida and the doctor down there told her to go home and enjoy the next six monthsof her life.  There was nothing they could do.  Well, her family would not stand for that answer and brought her to Fox Chase.  They performed surgery and removed more than 100 little tumors, they treated her, although there was a tiny spot they recently removed in May 2011, she is doing well.  Recovering nicely.  This over five years after the doctor in Florida had only given her 6 months.  This taught me that although every case and every one is different, go for second opinions and travel if you must...because there is always hope. Wishing you the best.

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