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Old 04-03-2012, 02:58 PM   #1
Kathleen09
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My sister

Hi everyone,
My sister was recently diagnosed with breast cancer - Stage 2, 2 tumors that are both <1 cm and we know it's in lymph node (only one that we know of for now...they nipped the node by accident in the biopsy so that's why we know that now). She is Her2+ and Triple receptor positive (sorry, still not sure what all the right terms are etc). Her surgery is April 10th - so that's when we really find out the details. Both of our parents are very ill - so the cycle of life has turned our roles as daughters more into parents to them. They don't know any of this yet. My sister is my best friend, my maternal figure (she is 13 years older than I am), she's my rock and my everything. We've been mistaken for twins at times and our brains operate as twins too which is amazing. Anyway, her diagnosis is devastating but she is being so amazing and so strong and I know I have to be strong for her. I've been reading, reading, reading all I can to know as much as I can - it's too hard for her yet to read what the web says. And any details I can take care of for her I am. We're going to look at wigs on Friday just so she can do that when she is strong both physically and mentally. I also have 2 very good friends that are breast cancer survivors so I've been talking to them a lot. I'm encouraging her to celebrate the small wins as we go and that they will be our pathway to true victory. If you have any suggestions on what I can do for her to support her the best way I can in every and any way I'd love the input. Until she has the surgery and we know exactly what is there, the "official staging" etc and she meets with the oncologist it's so scary - the unknown I mean. Also is it ever possible to not receive chemo when it's HER2 and in the node?
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Old 04-03-2012, 05:36 PM   #2
KDR
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Re: My sister

Hi, Kathleen09,
I can feel the love between you and your sister, and that's wonderful! Lucky people! There are many questions in your post that I can't answer, but I can tell you that you've come to the right place for questions, and you're joining people who understand.
Wishing you peace,
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower) 12 years and still just like yesterday;
Dxd: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Began dietary changes immediately.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Discontinue Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
June-October 2011: CEA in normal range. PET/CT stable; no new lesions.
November 2011: Progression in liver. Previous tumors remain eradicated.
Test Results on 09-093 Trial (scans every six weeks, bloodwork and infusions weekly):
December 2011: Begin trial: 09-093 Taxol, MCC-DM1 (T-DM1), Perjeta. Brain MRI: clear.
January 2012: NED. Liver mets: good riddance!
March 2012: NED. Taxol removed from regimen. Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June 2012: NED.
August 2012: NED.
September 2012: NED.
October 2012: NED.
November 2012: NED.
December 2012: 09-093 trial concluded; enter trial extension, 09-037. CT, Brain MRI, bone scan: clear. NED.
January 2013: NED.
March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: Met ablated, but major surgical mistake (major hemothorax: causing emergency thoracotomy, lung surgery, collapsed lung, chest tube, rib rearrangement, transfusion after 3.5 liter blood loss); plan to begin Navelbine/Herceptin later in month.
July 26, 2013: One dose Navelbine/Herceptin; too early after combined surgeries. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: Begin Protocol #10-005 A(11)-Temsirolimus plus Neratinib.
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Old 04-04-2012, 04:30 AM   #3
chekmark
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Re: My sister

Kathleen,
First I want to say that the bond you have with your sister and parents is amazing. May you always stay so connected. Her journey is just beginning but with your strong support and her positive outlook things will hopefully go well. Lets just hope that it was caught early as it sounds like it was. I think the standard of care is chemo with herceptin with Her2 but I think there are some on this board that have had herceptin only. I could be wrong. Chemo is doable and herceptin is a breeze. It is all so scary right now but it gets better. I cannot answer all of your questions but I hope that things go smooth for your sister. Someone her will chime in with answers for you. Her 2 is impatient and I think that is why they recommend chemo with herceptin. Please keep us posted. God bless. Darlene
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
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Old 04-04-2012, 10:00 AM   #4
snolan
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Re: My sister

Your sister is so lucky to have you there to help her. The one thing that seemed to help me get ready for the battle is when my Dr told me once I had surgery, the cancer is gone, everything we are going to do i.e. chemo/herceptin is to make sure it doesn't come back. Do everything you can do to make sure it doesn't come back, don't be scared of the unknown of chemo as we are all here to help her through it. The begining of this journey is the scariest but it does get better. Be wary of the web information as most of it does not contain results since herceptin was approved. Herceptin has changed to results so much for the positive. Let the Dr educate you on the whats and hows it is a much less stressful way. Good luck with your journey.
Suzanne
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dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 04-04-2012, 09:59 PM   #5
Paty
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Re: My sister

Dear Kathleen09,
You have come to the best board for her2 BC women. You are a great sister, I also have one sister I am very close to and I understand your worries and pain. It is very important that the tumors are small and once you have the final results after the operation, you will have more answer to what it is the right treatment that your sister needs to follow. her2 is supposed to be a form of very agressive cancer, but wait, dont read to much in the internet or you will be scary of all they say. Fortunately to us we have many treatments that keep us very well for a long long long time. Nowadays there is a drug called Herceptin (Trastuzumab) wich targets the Her2 and blocks it to keep acting. I am a 6 years survivor, my original tumor was 2.2 cm and I did receive chemo, radiawtion treatment and Hercepting for a year (every 3 weeks). So far I am doing fine and I am able to follow a new normal life. Feel free to ask any questions, there are so many of our survivors very well informed here that they will be able to answer your questions. God bless you and tell your sister that there e many treatments out there that re avIlable. I am sure her doctor will help her to find the best treatment for her according to the results.
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Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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Old 04-18-2012, 05:34 PM   #6
NanaJoni
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Re: My sister

Kathleen - checking in to see how your sister's surgery went. Hoping and praying for the best.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 05-04-2012, 10:40 AM   #7
Kathleen09
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Re: My sister

Hi Joni! What a nice surprise and how sweet you are to check in! I never got a notification that you wrote this message on 4/18. I have to tell I often think of you. Your first message to me in March I think it was... in particular gave me such strength that day when I was so scared and sad. I in turn was able to give that strength to her. I think of you every time I know she just needs to vent and I need to listen (following your wise advice) and I thought of you the first time I made her a healthy meal (another piece of wise advice)...I made her soup. She loves soup and loved the one I made. It's a lentil and swiss chard soup and its really delicious. If it sounds good to you I'm happy to send you the recipe.

Her surgery went well - although they determined the cancer was in 4 nodes and in one it came out of the casing slightly. But the good news is that her margins are clear and she recovered like a champ! We just went to her oncologist on May 1st - what a nice man. She will most likely start chemo at the end of this month.

When the pathology came back it was a dark day for her. She was so sad and it was the hardest day to date for her. The next day she told me that she woke up and wrote herself a note to Take the Bull by the Horns. And she did...she picked herself up and fought though her sadness. When she told me I was in awe of her. So I went on line and found a small bull stuffed animal...I wrapped him up and wrote her card saying how strong she was and how proud I was that day when she told me that she wrote herself that note and that this stuffed animal bull would be our mascot during this journey...so whenever she got scared or down and out he would be a reminder that we need to keep taking the bull by the horns and we'll beat this thing hands down and send it back where it came from.

Thank you again for checking in, Joni. I even told my sister about you. It's amazing how we all can impact each others lives even as complete strangers isn't it.

Talk soon,
Kathleen
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Old 05-04-2012, 12:18 PM   #8
NanaJoni
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Re: My sister

Kathleen - thanks so much for the update. Sounds like you and your sister are moving forward. This rollercoaster we ride can take us to a wonderful high or a terrible low in a matter of moments. The stuffed bull is a wonderful idea - having a tangible thing to hold onto is really helpful. I have a ring with the names and birthstones of my five grandchildren - when I was at my lowest I only had to look at it to get that little extra boost I needed to fight a little harder. While it may seem that these tough times will never be over, you'll be so surprised next year when you look back. So many of us here pray daily for each other - so draw on that energy when you need it. ( we may have a cosmic connection - my mother's name was Kathleen and one of my grandaughters is named for her, too).
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 05-06-2012, 05:41 PM   #9
Kathleen09
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Re: My sister

Hi Joni - Hope you enjoyed your weekend! Yes, we're moving forward. Your ring sounds so beautiful and I'm so glad it was able to give you such strength. Can I ask you a question?...I see in your stats you did TCH. Did you have any discussion with your Dr on TCH vs AC-TH? Reason I'm asking is my sister is deciding between the two and I know there's been some debate on the topic. I'd love any insights or information you have.
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Old 05-06-2012, 06:34 PM   #10
NanaJoni
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Re: My sister

Kathleen - my doctor didn't ever mention or consider the AC-TH. I was stage one and one of my small tumors was triple negative, the other was er-/pr-/HER2+++. With the double mastectomy and clear margins, TCH seemed to be the best option. I did follow up with the radiation because triple negative cancer doesn't respond to the hormone treatments like tamoxifen. I had a pretty rough time with each of the 4 treatments I did - potassium crashed on first one, infection, and then I threw 3 pulmonary emboli after the 4th. The blood clots were from all the multiple surgical procedures I had (3 for ports) and my onc decided I'd had enough. Some newer research shows that 4 TCH is as effective as the standard 6 so I'm okay with it. I know this all sounds terrible but at my age and with some other health issues I've had (autoimmunine-lupus, genetic clotting disease called Leyden mutation Factor V, etc) - I really think I did fine and have had a fantastic outcome. I've lost 40 lbs and now have lovely white hair. Your sister will lose her hair for sure on either regimen so start collecting scarves and/or baseball caps. I found out I look great in hats - I jokingly told my husband that I must have looked like hell before I had cancer because now people tell me I look wonderful. LOL You've had a lot of responses on another thread from folks who've had AC-TH and TCH so you should have some good info to digest. I agree that some of the pre-meds (especially the steroids) can be tough but they are necessary and make the treatments more tolerable. My cousin did the AC-TH and did very well - she's almost at the 5 year mark now and no recurrence or other problems. I had the TCH every three weeks with the Herceptin weekly. After the last TCH, I did herceptin for the next year. That's pretty standard. Herceptin is easy and is every three weeks for the 52. I had the runny nose side-effect and some thinning of my nails along with some mild fatigue during the few days after a treatment.
All that being said about treatment, you may also need to be sure your sister is staying healthy emotionally. That was a huge part of this journey for me. I did find a wonderful counselor who helped me deal with all the changes we were going through-physically, financially, spiritually. It's really hard to deal with so much and still be feeling your life is in the balance. She will surely never be the same - it changes you to face cancer. I feel I am a better, stronger, happier person now and get some pretty strange looks when I say how blessed I am to have had cancer. I've gone on way too long here so I'll finish now - you are both in my thoughts daily.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 05-08-2012, 10:38 AM   #11
Kathleen09
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Re: My sister

Hi Joni, So wonderful to hear how it changed you for the better. Thank you so much for all your insight. You have such a positive attitude. My sister does as well and I know that will help so much. She is doing extremely well emotionally all things considered. She hasn't missed a beat with work and is doing all she can to eat healthy so she is as strong as she can be during chemo. We already have 2 wigs and ton of accessories - sleeping caps, yoga caps, Baseball cap with hair....so she's all set and ready to go. She wanted to get all of that stuff done and out of the way before chemo started. We were laughing because the wig is actually the style we've been trying to get our hairdresser to do on both of us for 2 years! lol She also discovered a Wellness Center near us - she went to the open house over the weekend and LOVED IT! There's a nutritionist on site, a small work out room, everything they sell is natural and for disease prevention. We both got our antioxidant levels taken as well - her's was super low which isn't good, we need to get her higher before chemo starts. Mine was above average, but not where it should be. Which kind of surprised me because I eat VERY healthy and always try and eat a variety of fruits and veggies all the time to make sure my body is getting every vitamin it can. Have you ever had your levels checked - really was so interesting. I can send you the information if you like. The scanner was on Dr Oz once - there's video on You Tube all about it and how they help fight cancer. Here's the link if you'd like to see it: http://www.youtube.com/watch?v=QerPwoLVTIk.
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