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All TopicsForum: IBC (Inflammatory Breast Cancer) → Topic: IBC lounge: roll call, support and just a good place to hang out

Topic: IBC lounge: roll call, support and just a good place to hang out

Forum: IBC (Inflammatory Breast Cancer) —

Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.

Posted on: Mar 31, 2016 05:23PM

PurpleMinion wrote:

Hey all, I am starting this thread to give us a place to meet up and check in. We all know this "ain't Facebook" and since some of us have left the boards recently let's have a roll call and start fresh here. Some of the "IBC ladies" and other threads have gone a bit untended so let's see who we are:

I'll go first: dx June 2015 TN IBC, not NED but hoping to get there.

IBC is such a different diagnosis than so many of the other types of BC I think it is really important for us to talk and share and learn from each other.

I am taking a "board break" mid June 2016, I will be back but mentally exhausted right now. Peace be with all of you. Diagnosed at 46 triple negative IBC. Mets to skin, lungs, bones. Dx 6/29/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2- Chemotherapy 7/22/2015 Carboplatin (Paraplatin), Taxol (paclitaxel) Chemotherapy 10/22/2015 CEF Dx 1/7/2016, IBC, Right, Stage IV, metastasized to other, Grade 3, ER-/PR-, HER2- Targeted Therapy 2/4/2016 Dx 5/6/2016, Stage IV, metastasized to bone Chemotherapy 5/9/2016 Carboplatin (Paraplatin), Gemzar (gemcitabine) Dx Stage IV, metastasized to lungs
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Posts 721 - 750 (794 total)

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Jun 15, 2017 12:10AM positivenegative wrote:

hi there IBC sisters I haven't been here for a long time. Thanks purple minion for this forum. Well I just recently passed my 4 year cancerversary! Wow not bad for a lady who was supposed to be dead before 6 months from dx. Over 60 cycles of H&P every 3 wks and doing great with it. It's been a long and crazy ride.

Peace

Dx 6/5/2013, IDC, Left, 6cm+, Stage IIIC, Grade 3, 16/17 nodes, ER+/PR-, HER2+ (IHC) Dx 9/24/2013, IBC, Stage IV, metastasized to bone/lungs, Grade 3, mets, ER+/PR-, HER2+ (IHC)
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Jun 15, 2017 05:31AM Traveltext wrote:

Welcome positivenegative and congrats on your fourth cancerversary. Unfortunately PurpleMinion passed away last year after a one-year battle with TNBC, but there's a supportive small group here that would welcome your input. And I'm the resident IBC brother! Keep us posted on your treatment successes.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Jun 15, 2017 02:11PM Valstim52 wrote:

congrats to positivenegative. Hello Meadow so glad you are better. Ofcourse sending gentle waves to Traveltext and all others.

I am doing well. Stroke therapy is getting me to a good place with my mobility. So far so good on the cancer front. Hope all is well with my other fellow IBC' friends.

Val

The glass is half full. Do not live life looking in the rear view mirror. Can't go forward that way Dx 11/24/2015, IDC/IBC, Left, 6cm+, Stage IIIB, Grade 1, 2/19 nodes, ER-/PR-, HER2- Chemotherapy 1/11/2016 AC + T (Taxol) Surgery 5/24/2016 Mastectomy: Left, Right Radiation Therapy 6/21/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
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Jun 15, 2017 03:55PM - edited Jun 15, 2017 03:55PM by Hoy234

is ibc commonly mistaken for ringworm

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Jun 15, 2017 04:04PM Traveltext wrote:

Worriedmom, IBC would most likely present as far more aggressive inflammation than ringworm. Of course, a visit to your doctor would be advised for your peace of mind.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Jun 15, 2017 04:11PM Kicks wrote:

There is no way my IBC could have been thought of as 'ringworm'.

The IBC Forum is for those who are of is who are " Just Diagnosed, In Treatment, or Finished Treatmentt for IBC.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes
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Jun 16, 2017 05:36PM MoreShoes wrote:

Hello everyone. Good to read that things are going well.

Last year around this time, I had BMX and was going up and down to Amsterdam to have hyperthermia and radiation. This year, I've finished a course and yesterday I had exams. I'm now officially an interior designer. I don't care about the paper, I did it for me, I've learned a lot and it helped me concentrate on something else and not on cancer.

Doubted for a long time, but I bought protheses, wear them in the morning and forget about the matter. Slowly but surely I'm getting out of the dark place I was back in February. So thankful that I'm still around.

Dx 4/9/2008, IDC, Left, 2/16 nodes, ER-/PR-, HER2- Dx 6/21/2012, IDC, Right, 0/1 nodes, ER-/PR-, HER2- Dx 10/30/2015, IBC, Left, ER-/PR-, HER2-
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Jun 16, 2017 05:42PM Traveltext wrote:

Great that you have reported in here MoreShoes and so pleased to hear things are going well for you, both with the disease and your life in general. Both are important, I reckon.

I know you are an inspiration for the TN's here, so how about telling us about any treatments you are having?


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Jun 18, 2017 09:05PM Bravenurse13 wrote:

Just finished my 33 radiation treatments.   Thank goodness!!!

My skin is holding up really well, and my PS thinks I can do the exchange surgery in 4 weeks.

I have developed stage 1 lymphedema in my right arm, which is noticeable in my knuckles, but by wearing a  

Tribute Night time garment at night and sleeve and glove when doing any repetitive tasks, is working quite well.

It's Never Easy! Dx 9/25/2016, IDC/IBC, Right, 3cm, Stage IIIB, Grade 3, ER+, HER2+ Chemotherapy 9/29/2016 AC + T (Taxol) Hormonal Therapy 11/27/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/11/2017 3DCRT: Lymph nodes, Chest wall Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jun 19, 2017 01:37AM Traveltext wrote:

Great result with the rads Bravenurse, and well worth the effort. When was/is your surgery? Can't see this in your sig.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Jun 19, 2017 09:11PM - edited Jun 19, 2017 09:18PM by Meadow

Hoy234, I just saw your post, if you are still checking here, this is my response to your question...IBC is often mistaken for a lot of things! It is rare, and most Doctors have never seen it before, so it can be misdiagnosed at first, as many finds of conditions. But it advances rapidly, and does not just sit around long unchanged. There will be some classic IBC symptoms soon, maybe in even a couple of days. Hoping this answers helps.

Moreshoes and Bravenurse, so glad things are going well.

Positive, so glad to see you!

Val, hugs to you!

Traveltext, How are you, how is the family? how is the Australian winter? Many questions today! Summer here is heating up.

Kicks, Hello dear old friend. I am excited to tell you the Spouse and I had an little vintage camper restored, and within the next year or two I really want to take her north, to see Mt Rushmore and all the sights. I have never been there and must do this!

Dx 8/15/2013, IBC, ER-/PR-, HER2- Chemotherapy 8/26/2013 AC + T (Taxol) Radiation Therapy 2/11/2014 Breast, Lymph nodes Surgery 1/15/2017 Reconstruction (left)
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Jun 20, 2017 02:06AM Traveltext wrote:

Meadow. Life is good thanks. Recent scans have just confirmed my NED status for the two cancers. And the part of Australia I'm in is experiencing a fake winter, so can't even complain about the weather right now! You go for it with that camper! Can we see a pic of it?


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Jun 20, 2017 09:03AM Meadow wrote:

Sure! Pictures coming!

Dx 8/15/2013, IBC, ER-/PR-, HER2- Chemotherapy 8/26/2013 AC + T (Taxol) Radiation Therapy 2/11/2014 Breast, Lymph nodes Surgery 1/15/2017 Reconstruction (left)
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Jun 30, 2017 05:21AM minimoocher wrote:

Hello all,

Just got back from Lanzarote. This was a holiday that we had to cancel last year because of all the treatment I was going through. Boy was it worth the wait! Had a fantastic time. My resting naps were just as siesta times so I really made the most of everyday.

I had special assistance at the airports so didn't have to stand in queues which was great as I struggle with that.

Straight back to chemo, number 14 Kadcyla, on Tuesday. Resting up now and looking forward to our next adventure away, much nearer to home, in Wales.

Hugs to all, Mini

Dx 2/25/2016, IBC, Right, Stage IIIC, 15/20 nodes, ER-/PR-, HER2+ Chemotherapy 3/8/2016 Taxotere (docetaxel) Targeted Therapy 3/8/2016 Perjeta (pertuzumab) Targeted Therapy 3/8/2016 Herceptin (trastuzumab) Surgery 7/20/2016 Lymph node removal: Right; Mastectomy: Right Targeted Therapy 8/2/2016 Herceptin (trastuzumab) Targeted Therapy 8/2/2016 Perjeta (pertuzumab) Dx 8/30/2016, IBC, Right, Stage IV, metastasized to other, 15/20 nodes, ER-/PR-, HER2+ Targeted Therapy 9/20/2016 Kadcyla (T-DM1, ado-trastuzumab)
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Jun 30, 2017 04:46PM Traveltext wrote:

Welcome back Mini. Love the siesta concept. I'm sure it's much used by folk here!

So is it holiday, Kadcyla, holiday, Kadcyla? If so, go for it.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Jul 1, 2017 10:33AM Valstim52 wrote:

Hello Mini

So glad you got to go on holiday. Glad you posted. Hello to all. It's getting hot here in North Carolina. I'm enjoying each day. Feeling a bit stronger these days. Trying not to look back in my rear view mirror too much. Looking forward.

The glass is half full. Do not live life looking in the rear view mirror. Can't go forward that way Dx 11/24/2015, IDC/IBC, Left, 6cm+, Stage IIIB, Grade 1, 2/19 nodes, ER-/PR-, HER2- Chemotherapy 1/11/2016 AC + T (Taxol) Surgery 5/24/2016 Mastectomy: Left, Right Radiation Therapy 6/21/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
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Jul 2, 2017 03:36AM Traveltext wrote:

Good news Valstim. Looking forward is really important when you consider all we've been through.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Jul 2, 2017 04:48AM minimoocher wrote:

Ah Traveltext you guessed it exactly. Kadcyla, holiday, repeat.. I used to always be saving for the rainy day and waiting to do things but not anymore. My rainy day is here well and truly so like Valstim no looking back. Focus firmly forward. This forum is so good cause I know you understand exactly what it's like.

Mini x

Dx 2/25/2016, IBC, Right, Stage IIIC, 15/20 nodes, ER-/PR-, HER2+ Chemotherapy 3/8/2016 Taxotere (docetaxel) Targeted Therapy 3/8/2016 Perjeta (pertuzumab) Targeted Therapy 3/8/2016 Herceptin (trastuzumab) Surgery 7/20/2016 Lymph node removal: Right; Mastectomy: Right Targeted Therapy 8/2/2016 Herceptin (trastuzumab) Targeted Therapy 8/2/2016 Perjeta (pertuzumab) Dx 8/30/2016, IBC, Right, Stage IV, metastasized to other, 15/20 nodes, ER-/PR-, HER2+ Targeted Therapy 9/20/2016 Kadcyla (T-DM1, ado-trastuzumab)
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Jul 2, 2017 04:56AM Traveltext wrote:

Mini, I only know what it's like because of your inspiring posts and the antics of my mets pal Rob. He is exactly like you with the travel, test, treat, rinse, repeat cycle. Like him, I hope you've got some treatments in reserve. We live in an amazing medical era.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Jul 17, 2017 03:48PM MoreShoes wrote:

Hi,

I'm fine. Busy at work and can't believe that it's one year since the treatments. Life is back to "normal" and people are forgetting what I've been through.

One question for the American members. We go for vacation to US in August, in which shop should I look for prosthesis bras? Here they're very expensive.

Have a great vacation, enjoy yourselves as much as possible!

Dx 4/9/2008, IDC, Left, 2/16 nodes, ER-/PR-, HER2- Dx 6/21/2012, IDC, Right, 0/1 nodes, ER-/PR-, HER2- Dx 10/30/2015, IBC, Left, ER-/PR-, HER2-
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Jul 17, 2017 06:34PM Scwilly wrote:

Where are you? Marks and Spencers (a well known British store) do great Mastectomy (they call them post-surgery) bras.

Here's a link to their US page. http://www.marksandspencerlondon.com/us/l/lingerie...

If you are in Canada you can change the country (flag in top right hand side) and they seem to work for there too (Well they quote their prices in CA $) : http://www.marksandspencerlondon.com/ca/l/lingerie...:1

Previously, I've ordered clothing from the UK site - and it had free delivery (but didn't refund the VAT (value added tax) ) I've bought a number of their bras and found them great.

They have also got swimsuits: http://www.marksandspencerlondon.com/ca/search?q=p...:1

Enjoy and well done on reaching your 1 year mark.

Sarah



Dx 11/4/2013, IBC, Left, 2cm, Stage IIIB, Grade 2, 0/3 nodes, ER-/PR-, HER2- Chemotherapy 11/14/2013 AC Chemotherapy 1/14/2014 Taxol (paclitaxel) Surgery 4/29/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 6/24/2014 Whole-breast: Breast, Lymph nodes, Chest wall Dx 2/16/2015, DCIS, Right, 2cm, Stage 0, Grade 2, 0/6 nodes, ER+/PR-, HER2- Surgery 4/6/2015 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 3/23/2016 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Dx 11/15/2016, Stage IV, metastasized to liver, ER+ Hormonal Therapy 11/15/2016 Arimidex (anastrozole) Targeted Therapy 2/17/2017 Ibrance (palbociclib) Chemotherapy 8/31/2017 Xeloda (capecitabine)
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Jul 17, 2017 07:21PM Traveltext wrote:

MoreShoes, It's great that you've marked a year post treatment. What a good feeling! Are you able to work using your interior design qualifications?

Scwilly, How's your targeted treatment coming along?

I'm pushing forward with my MaleBC mission and just had another article published HERE.

Best wishes to all Loungers.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Jul 17, 2017 07:33PM - edited Jul 17, 2017 08:21PM by Traveltext

On a sad note, It's now just one year since PurpleMinion (Julie) passed. She's missed here, for sure, but hopefully not forgotten.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Jul 17, 2017 07:34PM - edited Jul 17, 2017 07:34PM by Scwilly

I'm dong really well on Ibrance. Ive been on it for 6 months, and I've had one scan which has shown spots shrinking and some necrosis. Prob due and one in a months time after I see my MO in August. The main side effect is being super tired. I looked at my WBC levels the other day and realised they are at same level as they were for ACT chemo so no wonder. However, I do feel I can tolerate Ibrance well. I'm taking it alongside Anastozole - which I feel is what is giving me my stiff joints. Trying to do some exercise - swimming specifically which helps. Thank you for asking.

Dx 11/4/2013, IBC, Left, 2cm, Stage IIIB, Grade 2, 0/3 nodes, ER-/PR-, HER2- Chemotherapy 11/14/2013 AC Chemotherapy 1/14/2014 Taxol (paclitaxel) Surgery 4/29/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 6/24/2014 Whole-breast: Breast, Lymph nodes, Chest wall Dx 2/16/2015, DCIS, Right, 2cm, Stage 0, Grade 2, 0/6 nodes, ER+/PR-, HER2- Surgery 4/6/2015 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 3/23/2016 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Dx 11/15/2016, Stage IV, metastasized to liver, ER+ Hormonal Therapy 11/15/2016 Arimidex (anastrozole) Targeted Therapy 2/17/2017 Ibrance (palbociclib) Chemotherapy 8/31/2017 Xeloda (capecitabine)
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Jul 17, 2017 07:58PM Traveltext wrote:

Scwilly, Exercise makes cancer drugs more effective according to recent research, and swimming is the perfect exercise; aerobic and low resistance on your joints. Do try to keep at it, even if it means finding a heated pool out of season.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Jul 18, 2017 10:25AM MoreShoes wrote:

TT, what a great article! Keep on educating people!

Yes, I also thought of Purple Minion when I wrote about the one year from treatment comment. We had the same diagnosis and of course I was rooting for her.

I'm not working as an interior designer, I've done this course for me, just for the fun of it. It took me 10 years and three times cancer but I finally realized that there's no "later". So I've bought the car, we're going for an expensive vacation to the US, I'm eating the chocolate.

Dx 4/9/2008, IDC, Left, 2/16 nodes, ER-/PR-, HER2- Dx 6/21/2012, IDC, Right, 0/1 nodes, ER-/PR-, HER2- Dx 10/30/2015, IBC, Left, ER-/PR-, HER2-
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Jul 18, 2017 10:31AM MoreShoes wrote:

Scwilly, thanks for the tip, I hadn't thought of Marks and Spencers. Good news that Ibrance is working. Swimming is always nice. I'm doing yoga, don't dare to go to the pool yet with BMX, another hurdle to pass.

Dx 4/9/2008, IDC, Left, 2/16 nodes, ER-/PR-, HER2- Dx 6/21/2012, IDC, Right, 0/1 nodes, ER-/PR-, HER2- Dx 10/30/2015, IBC, Left, ER-/PR-, HER2-
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Jul 19, 2017 05:38AM Traveltext wrote:

Good on you MoreShoes. When does your vacation begin? Plus, I hope you post some pics here of some of the whacky things you see.



Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Jul 27, 2017 03:43AM minimoocher wrote:

A special day in our home. My youngest daughter, 17, is off to Lourdes on volunteering Pilgrimage. When signing up last August I had just found out about recurrence and was not sure what 2017 would bring and July 27th certainly seemed a very, very long time away. Thankfully, by now I have had 15 cycles of Kadcyla and it's great to be able to see her off on her big adventure. I am so grateful to have access to this targeted chemo. It's a very clever drug.

Purple Minion is often in my thoughts.

Best wishes to all,

Mini x

Dx 2/25/2016, IBC, Right, Stage IIIC, 15/20 nodes, ER-/PR-, HER2+ Chemotherapy 3/8/2016 Taxotere (docetaxel) Targeted Therapy 3/8/2016 Perjeta (pertuzumab) Targeted Therapy 3/8/2016 Herceptin (trastuzumab) Surgery 7/20/2016 Lymph node removal: Right; Mastectomy: Right Targeted Therapy 8/2/2016 Herceptin (trastuzumab) Targeted Therapy 8/2/2016 Perjeta (pertuzumab) Dx 8/30/2016, IBC, Right, Stage IV, metastasized to other, 15/20 nodes, ER-/PR-, HER2+ Targeted Therapy 9/20/2016 Kadcyla (T-DM1, ado-trastuzumab)
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Jul 27, 2017 06:02AM - edited Jul 27, 2017 06:03AM by Traveltext

That's fabulous news Mini and what a great experience for your daughter. Do you get to tag along? I've heard many positive reports about Kadcyla and how good is it that you are going well on it coming up for one year now.

Valstim, are you still looking in a forward direction?

Bravenurse, how's the LE going?

Meadow, don't forget yo post a pic!

I'm way too well and was asked to write a piece for The Underbelly: https://theunderbelly.org/2017/07/male-breast-canc...

Best wishes to all.



Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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