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Diagnosed February 15, 2011
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monab53 posted:
This is my first time posting. I have read several of the post and have not found any of the women mention something similar to my diagnosis. If anyone reads this and have experienced the type cancer & treatment I would really like to hear from you.
February 4th I had a lumpectomy. The lump was 1.8cm, and was malignant [invasive ductal carcinoma, stage one, grade 3>. On February 14th I had what they called a partial mastectomy where they removed more tissue from lump location and also took four lymph nodes. My doctor called to tell me that there was cancer cells in one node.
Met with the oncologist this past Monday and she said I have triple negative cancer which is not estrogen or hormone related. Therefore the breast cancer drugs, such as, Herceptin, could not be used. I start my first IV chemo Wednesday, the 16th. I am going to have four treatments of Epirubicyn & cyboxan and then four of Taxol. This will be followed by radiation.
I am extremely nervous about starting chemo so I would appreciate any information.
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judyfams responded:
I'm so sorry to hear about your diagnosis. Your kind of cancer is known as triple negative breast cancer. I too had invasive ductal carcinoma -stage 1, but mine was hormone positive. Had a lumpectomy with 6 nodes removed, one pre-cancerous, had chemo and 33 rounds of external beam radiation. My chemo was 6 rounds of taxotere and cytoxan.

For the chemo I made sure to change my eating habits. During chemo I ate many small meals 5 or 6 times a day. The meals had lean protein like greek yogurt, chicken, eggs, turkey, beef and fish. I also ate organic fruits and veggies and drank lots of water. I also ate soups. I stayed away from fast food, greasy, fried or food high in salt and preservatives. On those days when I did not feel like eating I kept Ensure in the fridge and drank it to keep up my nutrition. I also tried to rest when I felt tired and did not make plans for the 3 days after chemo to give my body time to recuperate. The chemo was not a problem for me - other than feeling tired. I am 67 yrs. old and tolerated the chemo very well. I think I did so well because of the nutrition regimen I followed as well as taking the time I needed to rest.

Just remember to take care to listen to your body during the chemo - and try not to push yorself. If you can, take time off from work when you feel tired - just rest when you need to and you will do fine.

I wish you mch good luck and know you can do it - you are strong and think positively. Think of chemo as not being a punishment - but being the way to beat the cancer! You can do it!!!!!!!

Let us know how you are doing.

Judy
 
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rachael67 responded:
Mona, if you put "triple negative" into the search box for this community (not the main one at the top, but the one just above and to the right), it will bring up other posts discussing this diagnosis. I hope that might help.

Know that you will be in our thoughts. And let us know how you are doing.

Blessings.
Rachael
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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cindy12345678 responded:
Hi , I'm also sorry to hear your diagnosis. I had two different types of cancer. One was invasive plemoric lobular carcinoma and one was infiltrating ductal carcinoma. The lobular was hormone positive and the ductal was Her2positive.I had 12 weekly treatments of Taxol and herceptin. I didn't find the taxol bad. Just made me a little tired sometimes. Then I went to adrimycin and cytoxan. Four rounds of that.
I agree with everything Judy has said. I couldn't eat pizza or things that were peppery.But I think the thing to remember is that chemo is not forever. Remember to communicate any sideeffects to your doctor, they will help with that. I found with the taxol exercise helped with the fatigue. I was really scared of chemo too, but I promised my husband and family that I would get treatment .Now I am newly on the survivor side and glad that I did it! I know you can too!
 
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bcsurvivordona responded:
Hi monab53-In April 2010, I too was diagnosed with triple
negative invasive ductal carcinoma, stage one, grade 3 cancer. My husband and I took a long vacation in May 2010 and in June 2010 I had a bi-mastectomy with reconstruction instead of a lumpectomy. The reason for the bi-mastectomy is I had three tumors (a high chance of recurrence), a family history of breast cancer on both sides and did not want to go through this again. After the pathology report came back I was told that I would need chemo treatments but no radiation. Nine months after my diagnoses, on Jan 17, 2011 I finished 16 weeks of chemo. I received the breast cancer chemo treatment known as ACT. The first eight weeks of 4 treatments every two weeks (AC) was a combination of Adriamycin (red devil-it turns your urine pink) with Cytoxin followed by eight weeks of 4 treatments every two weeks of (T) Taxol. I won't lie; chemo is no walk in the park. 24 hours after the AC treatment I received a Neulasta shot to increase the bone marrow. After four treatments my oncologist stopped these shots because my blood work was good and the shots caused so much joint pain. I had a lot of pain and fatigue during the AC treatments. Taxol brought on a whole new set of side effects. Fatigue was not as much as on the AC but now I have neuropathy (nerve damage) of the hands, fingers, feet, toes and left leg. I am told with time this will subside. However, at my last support group gathering I met a survivor who is three years out of treatment and still has numb feet from the neuropathy. Taxol also damages the nail beds so it is very important to keep the nails cut short and use Hard-as-nails on them to help strengthen them. So far I have not lost any nails! While on AC I lost all taste for food and had to force myself to eat. Since Boost and Ensure were too sweet, my oncologist recommended I eat Instant Breakfast with a scoop of ice cream to make sure I was getting enough nutrition. The chemo diet is not the best say to lose weight (I lost 30 pounds) but I can no longer eat sugary foods —another chemo side effect/blessing in disguise. Chemo was the toughest thing I have ever done but I am definitely glad I got it. Now I know why God makes women lose their hair while on (AC) Adriamycin/Cytoxin; some days I had to lie down after my shower and was just too tired to blow dry any hair. After I finished chemo I had a PET scan that came back clean and showed no signs of cancer. My next step in recovery is to have my
final reconstruction surgery on March 31, completing my breast reconstruction. I would not have chosen the past ten months but I am proud to say I have completed
the passage from breast cancer patient to breast cancer survivor. Being diagnosed with breast cancer is the scariest event possible, but having fought the disease and won is the best feeling ever! I was a strong woman before diagnosis; however, I have grown even stronger for fighting for my life, taking control and putting me first for the first time ever. You need to know that there is light at the end of the tunnel, but to get there you have to move through the journey. I pass my strength on to you and my prayers are with you. This time is ALL ABOUT YOU. Don't be afraid to ask questions, ask for help or just ask for alone time. Keep your supporters close-you will need them. Stay strong, stay focused and take care of yourself. Sign up at www.caringbridge.com to keep a journal and send the link to family and friends to keep them updated on your progress. This will keep from having to send out tons of emails or calls-trust me there may be days when just typing an email uses up all your energy. remember to make the right decisions for you and only you. My last advice is once you are done with chemo and/or radiation, request a PETScan. I wish the very best for you and I pray for your strength, health and quick
recovery. Take care and remember to LET GO-LET GOD, he is with you. All my best for your speedy recovery-Dona[b
 
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monab53 responded:
I appreciate the replies to my post, especially the honesty!! I start chemo at nine in the morning [16th>, I'm ready. I have accepted that I have to go through this to be totally clear of the cancer and have faith that God will see me through. I also realize through your statements and advice from others that I have got to change some eating habits. I'm a southern girl & southern cook, biscuits, gravy, fried foods, pies, etc. but luckily my husband is a one who loves veggies and lean meats. He has been doing a lot of the cooking now days and I'm enjoying the new experience [most of the time>. I'll do whatever I have to do to make sure I'm here for him, my kids, & grandchildren.
One of the things that I have done to keep a positive attitude not only for myself but my family, friends, & my students was to dye my hair dark pink underneath with bright blond on top with pink highlights. When I arrived at school on Monday all of the female instructors had pink streaks in their hair in my support. That was a tremendous boost for me to have them show that they were behind me through this. I have a lot of people to support me.
This is a great website and I appreciate all of you and being able to read your experiences and those of others on the site.
I will report in after chemo!! God bless you all!!
 
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eliza500 replied to monab53's response:
Hello. I am so sorry you are dealing with this tough diagnosis. My daughter has finished surgery, radiation, and chemo, and is currently NED (no evidence of disease.) You have a rough year ahead....but it is worth the struggle. A few suggestions:

1. Look up the Triple Negative Breast Cancer Foundation. They have a forum, and also have a special service where you can find out about clinical trials specifically for this rare cancer. Clkinical trials let you contribute to research and improvements in treatment...and also can give you a chance at tomorrow's medicine today.

2. See a radiation oncologist. Recent research has shown that radiation in addition to chemo can have a significant effect on survivcal time for triple negative women.

3. Consider getting genetic testing. A comparatively high oercentage of women carry one of two genes for breast cancer (BRCA1 or 2.) If you are positive, the knowledge may help you to make better medical decisions for yourself.

Fewewl free to contact me if I can be of help.

Elizabeth Bennett
eliza500@aol.com
 
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MarMarg responded:
Dear Monab53:
In July of 2009 I was diagnosed with a triple negative, 2 cm, invasive ductal carcinoma, stage 2a, grade 3 tumor. I have completed my cheom - 4 doses of adriamycin and cytoxin, and because I was able to get into a study I received 4 doses of a drug called ixempra. I made sure I took my pre-chemo drug of Emend for nausea and I was not sick at all. I followed up with my steroids and drank a lot of water. One of the worst things for me was taste - nothing tasted good for about 7-10 days after my treatment. I came through my chemo pretty well - I really don't think I can complain. Don't let this consume your life, try to stay as active and involved as you can. I did lose my hair (it started to fall out pretty bad two weeks after my first treatment) which was upsetting as first - then I shaved my head and never looked back. My hair started to grow back during the second half of my treatments. I bought a nice wig, but rarely wore it, I wore a lot of different hats, but at home I never wore anything. My 17 year old recently told me that I looked strange in a picture with hair. I am 7 treatments in to my 37 radiation treatments. This is definately the easiest part. Try to stay as positive as you possibly can through this. You will have bad days but try not to let the bad overshadow the good. I live in Pittsburgh and the American Cancer Society offers a "look good feel good" program, where you go free of charge and receive a makeover and get a lot of good free stuff. If you have a program like this - do it. It puts you in contract with women in similar situations and really does make you feel good. I hope this helps, but to be honest, even down to my last treatment I always got a little anxious about having to go. I hope you are as lucky as me and have the best support of family and friends someone could possibly have. Good luck with your treatments. I will pray for God to give you the strength to make it through. God bless you.
 
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sundaysunrise responded:
Hi Mona,I had 7 tumors removed with a lumpectomy.I had a bilateral masectomy with no lymphnode involvement.Then had chemo for 4 months 2x a month.My breast cancer was the negative type.after a 2 year clearance I had one more on my rib in the skeletal muscle removed then had 33 days radiation treatment.I would encourage getting a PET scan to make sure you are all clear my PET scan showed a lymphnode behind my chestwall behind my sternum.So now I am waiting to see how it can be removed and chemo again.I always dressed nice but comfortable for chemo I wore make up with eyeliner and had a few different wigs to make me happy and feel normal.I was fine halfway through chemo but got weak towards the end of chemo.I also walked a lot I would walk for an hour or so for exercise and I believe it made me stronger and helped me to meditate/pray and listen to music helped me alot.I always would remember to be thankful for the medical help and all the wonderful doctors helping on the road to recovery.I too am heading back to surgery chemo .Good luck on your journey I'll be walking with you doing the same thing.Be strong and have a positive attitude it goes a long way in recovery.
 
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southerndell responded:
I am a 4 yr IDC survivor. I think I was more nervous about chemo than having cancer! Had cytoxan/adriamycin every 2 weeks for 2 months then Abraxane (Taxol) for 2 months. The best advice was given to me by an oncology nurse - keep something in your tummy all the time. So I nibbled - crackers, ginger snaps, yogurt. I ate on small plates but my husband made sure I ate a balanced little meal. Before my hair fell out I had it shaved. I was helped a great deal by the American Cancer Society's "Look Good Feel Better" program - even learned to draw eyebrows there. They also have a program called "Reach to Recovery" where you are paired with a breast cancer mentor to help with support and advice.
 
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catgerry responded:
Sounds close to my diagnosis 20 years ago. I had a lumpectomy, radiation and node dissection. My nodes were negative (only had a sample tested), my stage was between 1 and two because my tumor was l.5 in. It was node negative, which meant not responsive to estrogen, so I was not a candidate for hormone therapy and had to take 6 months of chemo; methotextrate, cytoxin, and flor??
I too, was afraid of the chemo and for me, it did turn out to be the rough part. Rememer, however, that many of the newer anti-nausea drugs were not available then. It did help, however, to have my slides tested, to see if my cancer cells really was agressive enough to warrant chemo. They were, which was not good news, but it did make me know for sure, that I needed to go through the chemo. I have since learned the doctors can tell you what percentage of survival can be increased by taking chemo, so you could also get an idea that way, of how important it would be for you to go through it.
I know this is scary for you, I was scared to death, and continued to be so, for a long time, but here I am, twenty years later. And the past twenty have been my best, as the cancer experience certainly changed what I thought was important in life.
I would be willing to continue to communicate with you, if you thought it might help. People who have gone through this can give you insights no one else can. God bless.
 
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Janey108 responded:
Just saw your post and hope you have some answers by now. I, too, needed chemo...4 cycles of AC and 12 of Taxol. Yes, it was scary, but I got through it. It is 2 years this month that I had my first chemo. I am healthy, happy, and enjoying my family and friends. I have even taken up walking which I never did before! You'll get through it! Make sure you have a support group, even if it is only family. If you need answers, go to Breastcancer.org, a terrific site! Jane
 
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dalelouk responded:
In Oct. of this year, I had a similar diagnosis, stage 1 grade 3. I had a lumpectomy, no involvement in the lymph nodes or surrounding tissues. But since it was triple negative, I had to go the chemo route. I have had three treatments, and have only one to go, four in all. Then I will also have radiation treatments. I have found that the chemo treatments are not as bad as I expected. It is time comsuming, I have mine three weeks apart, but only four in all. I receive a shot, Evisten I believe, the day following chemo. I always feel bad after that for about a week to 10 days, Very achy in my bones, and just feel like I am coming down with the flue, but they give me anti naseau pills, so have not had that problem! Good luck to you. B.L.
 
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cissy614 replied to dalelouk's response:
I had 21 weeks,and the shot the next day newlasta(spelled wrong)and the flu like systomes.My doc put me in a study of Aleve,B6 vitamin,and regular Claratin and bed rest for the first 3 day after.You start to feel better the week before your next treatment.
 
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msgrtom responded:
I had chemo for 6 months for 3rd stage colon cancer, with cancer in 3 of 5 lymph nodes-- after surgery and resection of the colon. I know how scary it is as you start.
After you get started it will become part of your routine and not so scary. Maybe unpleasant, but no longer scary. I would say too that attitude is a big part of this battle. If you go in thinking and believing that you will beat this thing, you will do much better. Prayer works! Trust God and put yourself in his hands and trust! He loves you. I have never had any recurrence since 1998!
You will make a new set of chemo friends from the waiting room! You will also have 'chemo-brain' so don't make any big decisions during treatment. Main thing is go into this with a positive attitude! God bless you.


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