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tnbc_husband View Drop Down
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    Posted: Dec 15 2012 at 2:26pm
sure don't want to be back here, especially on this forum. I browse once in a while but didn't plan on posting. 

My wife is 4 months out from radiation. We are scheduled to go to Hawaii for 2 weeks on Christmas day to celebrate our 5th anniversary and the end of a tough year. We have been looking forward to reconstruction in February. Now all that has suddenly changed. Two weeks ago itchy bumps, 40 or so, popped up over much of the radiation field. No sign of them the day before. She had seen the plastic surgeon and dermatologist the previous week. Both examined the skin and thought it looked great. When the bumps hadn't changed we went to the surgeon this past Wed. She wasn't concerned but look a biopsy of one just to rule out cancer. She called yesterday with the news that it is malignant. We will see the oncologist on Tuesday. I'm sure she will have scans to look for other mets. 

I've searched and found little on skin mets, especially coming so soon after treatment and so suddenly. Found an old post or two here. Can anyone share their experience? Any thoughts on likely treatment or clinical trials?

Thank you. 

Matt


Edited by tnbc_husband - Dec 17 2012 at 8:53am
Wife DX:12/11 age 55,IIIB, gr 3, 6x8cm+node, BRCA-, TX:DD neoadj chemo ACT, MX 5/12, 33 rads 6-8/12.

Skin mets 12/12; CMF 1/13; Xeloda/BKM120 4/13; colotectal/abdominal mets 6/13; Hospice 7/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Dec 15 2012 at 2:45pm
Hi Matt,

So sorry that you have to be back here, it is certainly where no one wants to be. I am sure that others can provide more informant than I, but what I would say is that it is imperative that they are sure that it is skin mets and NOT Inflamatory Breast Cancer. From what I have seen here, IBC often looks like skin mets and it is an entirely different animal and needs to be treated accordingly. Steve would be the one to speak with because he has helped many women with IBC and can give you many more specifics.

Best of luck to you both,
Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 15 2012 at 5:03pm
Hi Matt,

Deb is right about ruling out that it isn't IBC.  We've seen too many women have skin mets only to find out later on that it's actually IBC.  Steve can help you more on this subject.  He even started a couple of threads.  I don't want to scare you at all, and it most likely isn't IBC, but it's always best to rule it out as soon as possible.

http://forum.tnbcfoundation.org/inflammatory-breast-cancer_forum17.html

It might be a good idea to look at clinical trials and also get a second opinion from an NCCN facility.

I'm so sorry about this news and the postponement of your much anticipated vacation.  I hope this is just a delay and you'll get to reschedule that wonderful vacation.

Donna
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 Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 15 2012 at 5:42pm
Matt,

We're probably getting ahead of ourselves but here is an article on IBC:


Maybe more medical than you need but always a good thing to know at least some of the questions to ask.

I feel for you and your wife- your wife has the same timeline as I do. 

Hope you can still go on your Hawaii vacation - it's important to seize the day and enjoy life every day.

Lee


Edited by Lee21 - Dec 16 2012 at 10:06am
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 16 2012 at 7:53am
Dear Matt,

Thank you for writing. I am so sorry both of you are dealing with this right before such an important, special anniversary/vacation. 

Been up since 3 a.m. thinking about two TNBC friends we lost recently (one had Inflammatory Breast Cancer) and having trouble going back to sleep. I went to this site-my home away from home, and I found your thread. As others have already written (and I am so glad they did) you need to think about checking this out completely.

I have helped eight women over the last several years that had Inflammatory Breast Cancer (IBC). Most of the women were misdiagnosed with other conditions-primarily skin mets and mastitis-when in fact they had IBC.

IBC is mainly a clinical diagnosis and it is very difficult to do. It normally involves specialized scans and or diagnostic ultrasounds and a skin punch biopsy as well as a clinical exam. In my unprofessional view, it is imperative that your wife be seen by an IBC expert and seen quickly. The quickly part is due to the fact that IBC can be extremely aggressive/dangerous and needs to be treated immediately. 

Normally, because the disease is so aggressive, the two IBC Centers I work closely with normally see patients within a few days. The problem is that one of the physicians, Dr. Massimo Cristofanilli, is leaving for Italy for the holidays and will be back in the New Year. In my judgment that is too long to wait. 
I would suggest you consider going, as soon as possible, to MD Anderson's Inflammatory Breast Cancer Center in Houston, TX. 

Here is some information from them to read. MD Anderson is consistently ranked the number one cancer center in the U.S. 


Matt, I am going to send you my contact information now via our Private Message system. If you would like to talk can you please wait about three hours to call as my wife is asleep and our apartment is not that big and my voice carries.

I can walk you through how to register on-line to be a patient at MD Anderson's IBC Center and can hopefully help you get an appointment quickly. If all goes well and you have good insurance coverage and the ability to travel I believe your wife may be seen this week. I just don't know, for sure, if the holidays will affect that.

I know this is probably a very upsetting email for you to read and you don't know me. Further I am a volunteer patient advocate, not a medical professional and cannot and will not give you medical advice but I do have experience with helping women, and their loved ones, with IBC. I pray your wife does not have it but, in my judgment, you need to go to IBC experts who can give you a definitive diagnosis. Out of an abundance of caution I would err on the side of checking it out immediately even if it meant your vacation was postponed. 

Recently, I spoke as part of a patient advocate session representing The TNBC Foundation, at the 3rd International Inflammatory Breast Cancer Conference in Philadelphia. IBC is an extremely rare cancer and it is estimated that out of the 250,000 newly diagnosed breast cancer cases each year in the country 'only' 5000 are IBC. There were about 175 oncologists, physicians and other medical professionals at this conference compared to the 8000 or so who attended the San Antonio Breast Cancer Symposium the following week. I attended that conference as well and was saddened to see that although there were some research papers presented as posters there were no oral presentations on IBC, probably because it is so rare. I think that is very unfortunate because more physicians need to be aware that suspected IBC needs to be treated by experts.

The fact the IBC is extremely rare and the misdiagnoses so frequent, somehow particularly draws me to the women who have/may have it. Approximately 30-35% of all women with IBC have cancers that are also triple negative, making it even more challenging to treat.

Again, I pray your wife does not have IBC but I would strongly suggest you see a IBC specialist.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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p.s. here are links to two IBC specialists-

Dr. Vicente Valero


Dr.Naoto Ueno


From my experience, both oncologists are not only IBC experts but caring physicians, as well.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tnbc_husband Quote  Post ReplyReply Direct Link To This Post Posted: Dec 16 2012 at 2:19pm
Thank you for the posts. Steve, I will call you. I had found some info on IBC and some of Steve's posts expressing concern about skin mets being IBC so I was alert to that. 

I know that MDA in Houston is a key BC center including IBC. Does that expertise extend to MDA in Orlando? My sister and other family are in the Orlando area. We are actually there this weekend visiting and to attend the Trans-Siberian Orchestra concert tonight. I'm wondering if clinical trials or treatments developed in Houston are available in Orlando. No problem traveling to Houston but treatment in Orlando would be preferable since my wife would have a place to stay with loving care during treatment. 
Wife DX:12/11 age 55,IIIB, gr 3, 6x8cm+node, BRCA-, TX:DD neoadj chemo ACT, MX 5/12, 33 rads 6-8/12.

Skin mets 12/12; CMF 1/13; Xeloda/BKM120 4/13; colotectal/abdominal mets 6/13; Hospice 7/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 16 2012 at 2:37pm
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 16 2012 at 6:27pm
Dear Matt,

I would definitely go to Houston for the IBC evaluation. If the recommendation is for your wife to have standard of care treatment then family support can be critically important.

However, I think it is important to have your wife's overall condition assessed by the oncologists at MDACC to see what they recommend. 

Will give you some more thoughts privately.

I will try to find out if MDACC's IBC Center's clinical trials for IBC can be given in another MDACC facility e.g. Orlando. I will report back to all here on that question. It is a good one.

Matt, the other component to all of this is Supportive Care Services. 

http://www.mdanderson.org/education-and-research/departments-programs-and-labs/departments-and-divisions/palliative-care-and-rehabilitation-medicine/index.html

I know that MDACC in Houston has a wonderful supportive care unit. If you do go to Houston for a second opinion I would suggest requesting an appointment, from the MDACC oncologist, with the Supportive Care professionals. 

Once you are a patient in the supportive care unit you can call them and discuss whatever issues (e.g. pain management, fatigue, nausea, constipation, psycho-dsocial support, lymphedema, loss of appetite etc. etc..) are pertinent. It is a wonderful facility, staffed by dedicated professionals.

I am also going to try to find out if MDACC in Orlando has a similar unit.

Again, good luck whatever you decide.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lisalisa Quote  Post ReplyReply Direct Link To This Post Posted: Dec 30 2012 at 3:37pm
Hi Matt,
 
My sister's TNBC returned after about 6 months after she had double mestactomy and chemo, and radiation was all over.  She had bumps on her breast and the plastic surgeon didn't think much of it, but her regular surgeon biopsied them and sure enough it was back.  We were then told it was surgery she needed not chemo. So she had a huge major sugery...giving her a tummy tuck and using that skin and fat to make another "breast" and replace all the skin.  It was awful and took her so long recover.  But within 6 weeks of the biopsy results and surgery.....it had become bone mets and had spread to her back and hip...THAT QUICK!!!!!!!!!!  While waiting for her to heal and the pain from the bone mets and radiation she finally was able to start Gemzar....only to see that it not working and it has now spread to her liver.  That is all within 6 months.   BE VERY AGGRESSIVE, this cancer is terrible...my sister is only 31.  Keep on the doctors and don't let anyone ignore any of her pains....
mom diag. w/ bc @34, dies @37 in 1986. Little sister diagnosed @29 reoccurence @31,In 2010 TNBC stage 3A, lump.,4x AC 4x T, 38(?) radiation,double mast.,skin reoccurrence,bone mets 8/12, liver 12/12
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ChristineE Quote  Post ReplyReply Direct Link To This Post Posted: Jan 19 2013 at 10:38am
Hi
Haven't posted in years! 
I am TN with skin mets, for the past 4.5 years!!! 
Have been in active treatment the whole time.  Have taken almost every chemo that is out there.
My oncologist calls me an Outlier. 
Wondering if there are any other skin metsters out there?    Christine
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nelliepoo Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2013 at 2:01pm
Hi TNBC_Husband,
 
I was dx with TNBC 2/11, Stage 3A, Grade 3.  I had chemo, bi-lateral and radiation.  I had a local recurrence of skin mets on 2/12.  I did chemo and another mastectomy (huge hole in my chest) and used a wound vac to help heal faster.  I was just dx again 1/22/13 with another local recurrence of skin mets.  I had the PET Scan Wednesday and it seems to have spread to a lymph node under my left armpit and a lymph node on the left of my trachea.  My original cancer was on my right breast.

I did Carbo/Gemzar and it worked great on the skin mets last year.  I didn't have any side effects and my pathology came back completely clean.  The only problem I did have with the chemo was my white blook count....but that was to be expected.
 
I hope your wife gets on her treatment before it spreads...this is a crazy cancer!  I can't understand why mine won't stay away and comes back the same time of year?!?!?! 
 
Good luck and keep us updated!!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tnbc_husband Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2013 at 4:56pm
An update on my wife.  With Steve's help we were able to get an appointment with Lisa Carey at UNC on 1/9.  She recommended treamtment with CMF every 3 weeks, same as our local oncologist, but we decided to switch to her care and take treatments at UNC (about 6 hours round trip).  Since she has had a number of unusual situations during treatment we feel more comfortable knowing we are with one of the best and closer to leading edge in research.
 
Her skin looks better already.  She had nausea the first week but is much better this week.  Her scans came back without any clear areas of concern, a few areas to watch that are inconclusive so we believe this is still local.  My wife has great faith and is confident she will be healed of this evil.
 
I want to express our thanks to Steve for his help and guidance both in eliminating IBC as an issue and in smoothing the way to get us a quick appointment with Dr. Carey.  We have been very impressed with the comprehensive program at UNC, including the supportive care unit.  During our initial visit my wife was able to have a biopsy of one of the skin lesions for use in several ongoing gene research projects, one of which could help direct her own treatment.  Regardless, she loves being able to contribute to research.
 
Thank you to those who have posted with their experiences.  I hope others will continue to do so since the information I've been able to find on skin mets to date has been pretty scarce.  I will post updates on my wife's treatment in the hopes that it will help others who have this particular scare related to this horrible disease that brings us all together.
Wife DX:12/11 age 55,IIIB, gr 3, 6x8cm+node, BRCA-, TX:DD neoadj chemo ACT, MX 5/12, 33 rads 6-8/12.

Skin mets 12/12; CMF 1/13; Xeloda/BKM120 4/13; colotectal/abdominal mets 6/13; Hospice 7/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2013 at 5:07pm
Dear nelliepoo,

Suggest you try to say the folks at MD Anderson's Inflammatory Breast Cancer Center in Houston to definitively rule out Inflammatory Breast Cancer.

I am on a plane and landing soon. I will send you my contact details and try to write more tomorrow.

good luck to you..

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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p.s. Nelliepoo,

I have too many messages in my outbox so cant send you one...will take too long for me to clear them out so please send me your contact info if you wish and I will try to call you tomorrow to discuss.

thanks,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 31 2013 at 11:19am
Matt/TNBC husband,

So glad to hear of the good progress with your wife's skin mets!  I too believe that she can be healed, just as I am being healed (lung mets) right now.  It's so important to BELIEVE it and VISUALIZE and EXPECT a healthy body and to live each day with gratitude for what we can do.  I am currently working on a visualization of myself as a healthy 60 yr old (I am 49 now :-)  )

Christine, thanks so much for sharing your inspirational story.  How fabulous that you have been able to live with and control skin mets for 4.5 yrs and have not developed mets anywhere else (I assume from what you said).  So happy for you.  Sounds like you must have great medical care.  Is there anything else that you do to stay healthy that you would like to share with us?

LOve and peace,
Beth
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tnbc_husband Quote  Post ReplyReply Direct Link To This Post Posted: Apr 05 2013 at 2:31am
An update. After four cycles of CMF the skin mets responded quite well with the exception of a spot under the arm. However a CT scan on 3/13 revealed an increase in 2 lymph nodes recorded as suspicious in her December scan. These are located in the opposite underarm (left) from the original tumor (right) and were biopsied on 3/25. We received the results today. Positive for TNBC. So...no treatment today, just discussion of next steps. Her left breast still shows NED so very unlikely these are from a new primary. No point in continuing CMF since these lymph nodes are now definitely mets and are growing, despite positive results on the skin.

There is a trial at UNC for metastatic BC combining Xeloda with BKM120, a P13K inhibitor. This seems like a good fit and it looks like she can even start next week. Another possibility was a trial with pacitaxol but she did not tolerate taxol well and still has neuropathy from her AC/T regimen last year. Dr. Carey feels we aren't at a crisis yet since she has no organ mets so a trial with a known drug is a good choice versus completely experimental or standard care alone. Makes sense to us. She has high hopes for the P13K drugs.

My wife has no doubts that God will ultimately heal her. She has me believing now so I have taken this in stride much to my surprise.

God bless all of you.

Matt
Wife DX:12/11 age 55,IIIB, gr 3, 6x8cm+node, BRCA-, TX:DD neoadj chemo ACT, MX 5/12, 33 rads 6-8/12.

Skin mets 12/12; CMF 1/13; Xeloda/BKM120 4/13; colotectal/abdominal mets 6/13; Hospice 7/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 05 2013 at 4:00am
Hi Matt,

I know it's hard to see disease progression but its really good news there are no major organ mets. The trial you are considering sounds promising. I am doing well on a trial of the pi3k inhibitor BAY80-6946 in combo with taxol. Have been on it for 5 months now with mild side effects and it has shrunk my lung mets way down. I am stable now. Good luck to you and your dear wife and please keep us posted. Your wife's faith is a marvelous thing!
Beth
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sarah66 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 08 2013 at 2:09am
iam sorry to here about your wife matt and will pray for her, that things will go well.
 
steve
 this is sarah66 could you tell me who the two women we lost.
 
 steve
also have you heard of metiformin, its a anti-diabetic drug the has been trail for tnbc it kills cancer stem cell. i have been takinng metiformin 500mg. thru my family dr. i took the article written on metiformin written in cure mag. and he agreed at the time to put me on it. i know you have to be careful d/t low blood sugar. i take it since 2011. iam not a diabetic. do think this has help in anyway. take care sarah.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tnbc_husband Quote  Post ReplyReply Direct Link To This Post Posted: Jul 29 2013 at 1:15pm
Much has happened in the last few months.  The trial of Xeloda and BKM 120 had a dramatic impact on the skin mets but the next scan showed a lymph node that was pressing on her ureter and causing the kidney to swell.  She had a stent put in and had 16 radiation treatments during June.  During this time she also developed pleural effusion which was found to be malignant and consistent with BC.  She had the right lung drained twice and the left once.
 
She struggled through the month of June with terrible constipation and abdominal pain.  All the doctors thought her problems must be lingering effects from chemo as well as from the radiation since the radiation had to pass through the colon.  However, 4 weeks ago her gastroenterologist performed a Sigmoid colonoscopy as her constipation symptoms continued.  He found a tumor blocking her colon and two days later she had an emergency colostomy. She was too weak to try to remove the tumor but she did look around and took biopsies.  She saw considerable spread of disease through the abdominal lining.  As you probably know, BC spread to the GI tract is extremely rare.  After preliminary pathology we thought it might be a separate, unrelated rectal cancer.  However, tests showed that it was, in fact, the breast cancer.  In and of itself that was good news in that treating two separate cancers would have been very difficult as they respond to different chemo agents.  However, it was clear that she would have to get considerably stronger in order to be able to undergo chemo again.  The surgery really took a lot out of her physically.  Regardless, her faith in ultimate recovery was undeterred.  She spent 6 days in the hospital

 

Two weeks ago we went back to UNC for surgical follow up, to discuss the pathology results and a new treatment plan.  Her right leg had started swelling the previous Sunday.  The oncologist was concerned about a clot so we were sent to ultrasound where they found an 8 inch clot in her thigh.  They started her on once a day injections of Lovenox, blood thinner.  Two days later she was coughing and was short of breath.  An x-ray found the right lung full of fluid.  Due to the blood thinner, however, she could not have the lung drained as an outpatient.  She was admitted and had the lung drained over the next two days.  The procedures took a lot out of her, just as the surgery did.  She was finally discharged Tuesday last week.  After meeting with both the palliative care nurse and Hospice consultant, we asked to be referred to Hospice.  We had already been leaning in that direction and this episode underscored how complex her care has become.  Our oncologist told us during our last visit that further treatment would have limited benefit, trading quality of life for at best a few more months.

 

She is at peace with her decision as am I.  But her faith endures.  The way she explained it to me that she knew Hospice meant end of life care to most people but that she still believes that God will heal her and she didn’t see why she shouldn’t be comfortable until that happens.

 

We had the Hospice setup nurse come by Wednesday and received equipment and new medications.  She has been in significant pain since the surgery and this was key to our decision.  I can’t stand to see her suffering.  I have taken a leave of absence from work. It’s amazing how easily I let go of work and am now focused on her care.  She is very thin and very weak.  I had hoped that after the surgery her appetite would come back.  It hasn’t and sometimes eating makes her nauseous.  Instead of rallying and starting to regain her health, she is slipping with each crisis.  The Hospice nurse thinks her body is starting to shut down.  That is consistent with what I have seen in the last 3 weeks.  It certainly is not because she has given up or her faith has waned.  She is amazing and is the reason I can get through each day.

 
We continue to pray for a miracle.  I hope that her story helps someone else recognize symptoms and get the care they need.
Wife DX:12/11 age 55,IIIB, gr 3, 6x8cm+node, BRCA-, TX:DD neoadj chemo ACT, MX 5/12, 33 rads 6-8/12.

Skin mets 12/12; CMF 1/13; Xeloda/BKM120 4/13; colotectal/abdominal mets 6/13; Hospice 7/13
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