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Looking for Insight...please.

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thginknodnarb View Drop Down
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    Posted: Jul 08 2016 at 2:40am
This is my first post on this forum and I'm just looking for insight as to whats next.

My wife. Age 33. Was diagnosed with Stage 3 TNBC in April of 2015. She had a grade 3 tumor, positive Axillary Lymph nodes, and BRCA2 positive. Her breast doubled in size in a matter of weeks.

-In May, June, and July 2015 she received Chemo. 
-In August 2015 she has a double mastectomy and lymph node dissection. Test results showed she had a complete response to Chemo.
-In November 2015 she had a preventative Hysterectomy because she was BRCA2+
-In December 2015 she had Radiation and we were given the all clear.
-In April 2016, one year to the day biopsy results showed my wife had skin mets. A PET scan showed there was no other metastasis. They considered it a local reoccurrence because they we located around the breast where the original cancer was.
-In May 2016, they did a radical surgery taking my wife's chest wall on that right side all the way down to the bone(I could see her ribs). She had a wound vac for 4 weeks while they watched closely for signs of more skin mets.
-In June 2016, everything looked good so they went ahead and did a latissimus flat and skin graft to cover the 20cm x 20cm hole in my wife's chest. 

Here we are in July, we have at least 3 months of recovery because part of her flap didn't take and died. And this week skin mets show up on the skin that was left from her other breast.

I'm not sure what I'm asking, but I just need insight into what to expect next. We have known from the beginning that her cancer was very aggressive and when it returned in 3 months the Dr's where even more concerned. Now this. Anyone have a similar experience? Do we need a different opinion on what to do? If you look at our timeline you really can't move much faster that her Dr's have moved. I'm just at a loss. We meet with her oncologist next week to discuss what's next.

Thanks.
Brandon.
 
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Tulips View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Jul 08 2016 at 7:53am
Oh Brandon, I'm so sorry.  What you two have gone through is just awful, of course.  I am sorry that I don't know much about skin mets myself, but just wanted to let you know that there will be support and hopefully some good advice coming your way.  
(I myself did not have a complete response to chemo...also initially diagnosed April 2015.  So after chemo, surgery, and radiation, I am taking an additional chemo treatment, Xeloda, hoping to prevent recurrence, but I am very high risk).  I am hopeful that your wife's complete response to the chemo that was seen at surgery time means that her spread is limited to the skin, and I pray they figure out how to eliminate it as easily as possible.
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Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 08 2016 at 8:15am
Brandon,

I'm so sorry for all you and your wife are going through and the frustration of this disease.  I'm not saying it is, but you might want to rule out Inflammatory Breast Cancer.  Sometimes skin mets are misdiagnosed and are actually IBC.  It's difficult to diagnose, but there are a few experts that you might want to consider for a second opinion.  I'll post some links you might want to look at and discuss with your medical team.




DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: Jul 08 2016 at 9:55am
Brandon,

I am so sorry to read what's happened to you and your wife. I honestly don't know what to say but do know that my thoughts and prayers will be with you. When you have a moment, please let us know what is happening, ok? Much strength.
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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thginknodnarb View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thginknodnarb Quote  Post ReplyReply Direct Link To This Post Posted: Jul 08 2016 at 11:30am
Thanks for your thoughts. I'm not sure on the Inflammatory Breast Cancer...her skin mets showed up like BB's under her skin. Some where red and others where her skin color all in a straight line. No pain associated with them. They literally show up over night.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beanie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2016 at 9:39am
Brandon, I am so sorry about your wife's diagnosis. My 25-year-old daughter has a similar story. She was diagnosed with TNBC, Stage III, BRCA 1+, in September 2015. Chemo for 20 weeks, A/C and Taxol, followed by double mastectomy. Only 3 weeks after surgery she developed skin mets. The rash was rapidly spreading and they scheduled her for surgery. We sought a second opinion (wondering about IBC which the specialist ruled out.) I would highly recommend seeing someone who is familiar with triple negative and with skin mets. Our original oncologist had no idea how to treat this. The PET scan showed she had regional spread of cancer (axillary lymph node as well as supraclavicular node involvement.) They haven't really given us a stage yet. My daughter is now doing chemo (cisplatin/gemzar) and will follow up with surgery. Skin mets are difficult because the skin has no boundaries. I have been assured that it can be stopped with the right treatment, though. Here is a link to another board where a member has put together a guide to Metastatic Breast Cancer-she has some really good info on treating skin mets and will email it to you free of charge. Also the Inspire site has some really knowledgeable gals that are glad to answer questions. Praying for your wife! https://www.inspire.com/groups/advanced-breast-cancer/discussion/free-mbc-guide-1/
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thginknodnarb Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2016 at 10:09am
We met with my wife's oncologist yesterday. Her biopsy came back positive for metastatic cancer again. Since her appointment the spots have spread to both sides of her chest wall. She is now considered Stage 4 and surgery again is no longer an option. Her oncologist was willing to try surgery once with the skin mets, we did, and it didn't work. We will immediately begin chemo again. We will find out today, but I believe she will be starting on a pill chemo first as they try to find a drug that will control it. This is the first time we have had the life expectancy talk with her oncologist. 

Thanks for your prayers and info.


Edited by thginknodnarb - Jul 13 2016 at 10:12am
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Tonya98 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tonya98 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2016 at 1:05pm
This is very similar to my story.  Dx at stage 3 and 3 months after treatment I had a red rash at the surgery site and it was spreading rapidly.  Put on chemo immediately which held it somewhat but other areas showed up. Was told we have a chance to stop it but when it started to wrap around my side and over to my back area and up to my neck, the doctors put me at stage 4. It was frightening seeing cancer on the skin. I had radiation the second time which left a big open wound on my chest for almost an entire year. The good news is Xeloda put a stop to the skin mets and I haven't seen them since.  I did get a chest wall met after surgery to close the wound but it has been stable for several years. No other mets. My skin mets showed up in 2008 and I have only had one other met since then. I believe it was because the doctors jumped on this and that I had a good response to chemo. The radiation doctor at UCSF was the first to offer me hope about skin mets. About the ability to contain them. I have been able to live a good life for over 8 years after getting skin mets. There is hope.  
2/1/07 -IDC 2.5cm node positive her2+ ACT&herceptin.

1/8/08 recurrence to skin -triple negative. 07/23/10 -chest wall. Parp trial 9/10 - present. Iniparib ending November 2015 Stable 9/19/2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2016 at 7:31pm
Thank you for posting Tanya, you inspire me   
Keeping you and your wife in my prayers Brandon. I think many here would agree with me that having a strong, supportive partner is the best cancer fighting tool we can have, you too inspire me.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2016 at 8:40pm
Absolutely, Kellyless!  Tonya, your story is so helpful and inspirational.  And Brandon, we are hoping for the best, and you clearly are doing an amazing supportive job!  I am so sorry about this new news.  If the pill form of chemo she's having is capecitabine/Xeloda, I hope I can put you at ease--I've been on that for 6 rounds already, and very,very minimal side effects.  I hope that's true for her, too.  Good luck, we are all praying for you two!
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote romnessprite2 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 29 2016 at 1:53am
Hi. I finished radiatoin june 2nd and now have a redish hot spot on my skin all along the surgery scar. There was a whole that a big scab and that still has not healed. My Dr. Today put me on an antibiotic hoping its an infection. He used the word cellulitis. I was just reading about inflamatory skin cancer and now Im really scared. Im hoping it goes away with antibiotics.
Stage 3A. TNBC Diagnosed 9/15/15 2cm grade3. 4AC & 12taxl .double mastectomy3/8/16. 25 rads finished6/2. xeloda started 7/7/16 stopped xeloda because of side effects7/14/16. BRCA+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beanie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 29 2016 at 6:33am
romnessprite2, I'm sorry for this new fear and I'm hoping that the antibiotic clears up the redness right away. Inflammatory skin cancer is extremely rare and it is fast growing. If the redness doesn't go away, I would just insist on a skin biopsy to rule it or skin mets out. Let us know how you're doing!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote romnessprite2 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 29 2016 at 2:35pm
Thank you Beanie. I will keep you posted. Tanya your story gives me hope too. Im glad the xeloda controlled the skin mets. I was taking xeloda but it made me so sick and Ive had a headache since the day I started it so the Dr. Said to stop for awhile to see if I feel better.Im just waiting to see what happens next.
Stage 3A. TNBC Diagnosed 9/15/15 2cm grade3. 4AC & 12taxl .double mastectomy3/8/16. 25 rads finished6/2. xeloda started 7/7/16 stopped xeloda because of side effects7/14/16. BRCA+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thginknodnarb Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2016 at 8:41pm
Hey guys,

My wife just finished her first round of Xeloda. She took 4000mg a day for 2 weeks. Besides hot flashes and a little fatigue she has had zero side effects. If you are going to get them do they normally hit you from the first round? Or can they come later?

Through out the first round her cancer has continued to spread on her skin. It is all the way across her chest and wraps under both arms. Some of it is small nodules under her skin, but most of it is her skin turning a reddish purple color and becoming very firm and and inflamed. It has actually begun to spread onto the flap from her back. For anyone who has been on Xeloda with skin mets how many rounds did it take to start to see changes in your mets?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote romnessprite2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2016 at 10:04pm
So sorry to hear it has spread. Some times they have to do radiation at the same time as xeloda to stop it. You can always ask about it. And second opinions are always worth it.
Stage 3A. TNBC Diagnosed 9/15/15 2cm grade3. 4AC & 12taxl .double mastectomy3/8/16. 25 rads finished6/2. xeloda started 7/7/16 stopped xeloda because of side effects7/14/16. BRCA+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beanie Quote  Post ReplyReply Direct Link To This Post Posted: Aug 06 2016 at 10:21pm
Brandon, are you near a comprehensive cancer center? I wanted to encourage you that my daughter is at Duke in NC and her TNBC specialist does NOT consider locoregional recurrence Stage IV, but still stage III. I wonder if you should go for a second opinion if possible. Skin mets are so hard to treat but can be treated successfully if you get the right chemo. Is the Xeloda working yet? Has she had a PET scan to rule out metastasis anywhere else? I pray that it is working, but I hope you'll seek out another opinion if it is not. I know you both are exhausted and discouraged, but hang on to hope!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thginknodnarb Quote  Post ReplyReply Direct Link To This Post Posted: Aug 06 2016 at 11:48pm
We start her second round of Xeloda on Monday after seeing her Onc. During the two weeks of her first round and this week off the skin metastasis has continued to spread. She had a PET scan back in May that showed no other distant mets. They are waiting to do another PET scan. They said that with all the surgery she had in the last 2 months the scan would not give clear results. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 06 2016 at 11:50pm
Brandon,

You might want to consider sending Steve a private message.  He knows many excellent TNBC doctors that you and your wife might want to consider for a second opinion.  

This is from another thread:


Originally posted by SagePatientAdvocates SagePatientAdvocates wrote:

Hi,

In my unprofessional view, it is ESSENTIAL that you see an IBC expert who can help determine whether you have IBC. A diagnosis of IBC is a clinical diagnosis. It is made by the IBC expert, most often a Breast Medical Oncologist. Often a skin-punch biopsy is performed. 

I work very closely with three IBC experts and have introduced many women to them over the last decade. 

I am going to send you a Private Message now with my contact information and would be happy to try and help you. I work as a volunteer Patient Advocate and there will be no charge.

Again, I am not a medical professional and will not give you medical advice but I can try to help you see an IBC expert. Because IBC is such an aggressive cancer, most of the time, the physicians I refer patients to, see them within one week. 

This morning I am accompanying a woman to a consult with a physician who is an IBC expert. If you can respond quickly, I can speak to him about your case, today. 

For reasons that still remain a mystery to me most physicians, from my experience, all-to-often do not correctly diagnose IBC. Perhaps because it is so rare. Perhaps, because it is not taught as a separate course in medical school. Whatever the reason I have seen a lot of missed diagnoses over the years. One woman I helped was on 8 different courses of antibiotics because she was told she had an "infection." This went on for seven months while the IBC continued to progress. This all happened prior to her meeting me. Finally, we went to an IBC expert who gave her the correct diagnosis. 

I also helped a woman who was told by a Breast Medical Oncologist "to the stars" in California that "if you walked into my office today...I would examine you and tell you that you have IBC but you have TNBC and women with TNBC do not have IBC." In fact, it is my understanding that maybe 60% of the time when a woman has IBC it is also TNBC.
It was an incredibly inaccurate statement and the woman suffered because of it.

Again, I can't tell anyone whether they have IBC or not and if they have received a diagnosis of IBC I can't tell them what their treatment should be but at least I can refer patients to an IBC expert and then each person must make a decision about their treatment plan and I often refer the woman to another IBC expert to get a second opinion.

I am a great believer in second and third opinions. The problem is that it is often expensive to travel to another city to get those opinions and insurance companies, at times, are not willing to pay for multiple opinions. Or it is difficult, for a lot of reasons, for the woman to travel and at times folks are simply not willing to travel. 

The mark of an excellent oncologist, to me, is one who embraces a second opinion and makes the patient feel comfortable getting one as long as s/he knows that the patient is going to a NCCN or NCI center. Other physicians, unfortunately, make the patient feel disloyal/guilty by seeking a second opinion. That is extremely unfortunate, in my view.

Some oncologists, in my view, are often arrogant about their abilities. Arrogance is, often, not warranted when it comes to IBC and/or TNBC. One of the top Breast Medical Oncologists in the country, formerly President of ASCO told me about 8 years ago. "I am humbled by cancer."

IBC is extremely difficult to treat. But I have seen several women live far longer than they would have if they had not been properly diagnosed. Others present with very advanced, often metastatic disease and treatment is often, unfortunately, very challenging. 

My attitude is that if IBC is suspected you should see an IBC expert, or even experts, so that it can be confirmed or ruled out. The other challenge is that if IBC is diagnosed a clinical trial may be suggested and often one institution's clinical trial may be proprietary and therefore may only be available at that institution, which may present very difficult logistical problems. It can all be very complex and challenging with, often, no easy answers and certainly no guarantees.

warmly,

Steve
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote thginknodnarb Quote  Post ReplyReply Direct Link To This Post Posted: Aug 19 2016 at 12:25am
Just an update. 

My wife just finished her second round of Xeloda(4000mg a day). She has continued to have progression on her skin and has yet to see anything moving in the right direction.

We went to our wound care appointment yesterday(she goes M/W/F) and were concerned because the flap from her back has begun bulging out a bit. The surgeon swung by(her office is right next door) to examine everything and was pretty concerned. She thinks cancer is growing behind it causing it to push out. She also has developed a spot where the cancer has surfaced and created a weeping wound on her chest.

She called our oncologist that afternoon. Our oncologist called us that evening from her cell phone around 8PM. We are moving on from Xeloda...wish it would have worked...it was so easy on her system....but it's time to move on. Tomorrow morning at 8:00AM we will find out what IV Chemo we are trying next and she will get the first round while we are there. Glad they are moving quick.

Her oncologist doesn't want to wait for a PET scan. Just wants to get going on something as soon as possible and schedule a PET scan for next week. Prayers welcome.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ssam Quote  Post ReplyReply Direct Link To This Post Posted: Aug 19 2016 at 5:19am
Thinking of you and your wife Brandon, and sending hope and strength to you both. x
Dx Dec 2015. Stage 1 Grade 2.
6mm tumour. No lymph nodes involved. No chemo. 20 rads. Age 50.
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