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6 years Stage IV-5 years NED chemo holday

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hydeskate View Drop Down
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    Posted: Oct 10 2014 at 3:29am
October 2009 is when I had my last chemo, following 3 consecutive NED scans I was granted a chemo holiday that was 5 years ago  My first NED scan was at the end of 2008 after completing the Red Devil as a stand only chemo before that I had only taken Abraxane.  

I was told it would be a short lived vacation and I would be checked every 3 months, well those 3 months have changed to 6 months. Shortly after the holiday started we were certain it was back but test after test should no cancer, thank-fully my oncologist wasn't just a breast oncologist she was multidisciplinary. 

She was able to narrow down the issue as auto immune and called up the Rheumatogy department, after reviewing my case he had it narrowed down to lupus and sjogren's before I even stepped in the office. Test were run and by summer 2010 I was dx with yet another chronic disease Primary Sjogren's.  My immune system is attacking healthy organs in my body particularly ones that make moisture.  For example, eyes, glands in mouth, lungs, kidneys, etc. 

It seems after looking at my entire medical history I have had Sjogren's since I was a baby, back then it was my ears and nose that was getting attacks.  The attacks would come and go as a child but started getting more prevalent went I moved from the country to city for college.  Then after cancer it took off like a wildfire.

My oncologist believes that the Sjogren's is somehow helping to keep the cancer NED, but Sjogren's overall has been far worse on my body overall than the cancer.   I have been limited to just Methoxtrate and Plaquenil to treat the Sjogren's plus several other drugs to treat other effects caused by the attacks  Methoxrate funny enough is an older chemo for breast cancer, I am only taking low doses once a week.  

My current drug regiment is not working, it seems as soon as we get one thing under control another issue pops up.   It is frustrating cause I have not one but TWO chronic diseases neither have a cure and both involve treating things as they FLARE.  Add onto that the fact the doctors believe one is keeping the other in check making the doctor's more hesitant to change things.  

Right now my eyes are taken a big hit, I never would have thought light could be so painful.  My  next CT scan is this November and tough decision will have to be made since the eye surgery hasn't relieved the eye issues instead they are actually getting worse.  

If the cancer is back than the decision is easy back on Chemo if it is NED we have to figure out the next drug to suppress my immune system that quite frankly may cause the cancer to come back with a vengeance.  Damned if you do and Damned if you don't. 
IDC, 1cm, Stage IV, Grade 3, 2/20 nodes, mets, ER-/PR-, HER-
Mets Liver & Lungs
Sjogren's Syndrome
http://heidiy13.blogspot.com/
http://heidyplayscalediorama.blogspot.com/
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Oct 10 2014 at 5:35pm
Your case is one of the most interesting and rare I've ever heard of. I am sorry to hear about how this has affected your quality of life so. Neither cancer or Sjogren's is easy to deal with, but having to worry about BOTH at the same time is mind boggling. I am happy you are NED and have been for quite some time; I do hope for your sake that there is some kind of treatment on the horizon that might mitigate the effects of the Sjogrens disease for you while keeping your cancer at bay. 

Best Wishes for you Hydeskate,
Lisa
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Adnerb Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2014 at 8:26pm
Wow, Hydeskate, I agree with Lisa.  Your case is very interesting.  Although I'm glad that the cancer beast is not bugging you, I didn't know how awful Sjogren's can be!  I have a friend whose RA is keeping her BC in check, or so it seems.  Another one has MS and BC.  The MS seems to be winning, but that's not even anything to celebrate.  So I am going to stop wishing I had an auto-immune disorder, and I am wishing you the best in your attempt to control both diseases.  Please keep us posted!
'05 Stg1 TNBC Lump, SNB, A/C, 33 rads
'09 Stg2 ER-, PR+, Her2-, Bil.Mast., T/C, Arimidex.
'13 Stg4 Lung mets, ER+, PR-, Her2-, Carbo/Gemzar, Letrozole.
'14 Abraxane in July
'15 Abraxane in March
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 13 2014 at 9:04pm
Hydeskate,

Congrats with still being NED!  I've always thought researchers should study people like you that have a condition that might be keeping the cancer in remission.  Why is it happening and how can they use this information for better treatment of metastatic disease?  I saw this article in the NY Times and thought about you and others that responded to treatment or trials.

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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hydeskate View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hydeskate Quote  Post ReplyReply Direct Link To This Post Posted: Jan 12 2015 at 3:32am
Scan's this past November came back NED once more, my next appointment is this February.  My doctors decided to increase my Methotrexate to hopefully get my Sjogren's under-control, my Oncologist is crossing her fingers that the increase will not inadvertently cause the cancer to explode once more.  We also added Gabapentin for my fibro.   I am kind of nervous at the moment since there are new pains and soreness hoping it is just the sjogren's.

My eye doctor finally got my insurance company to sign off on Restasis hoping this will help my severe dry eyes.  He also put me on some antibiotic that is suppose to help with the inflammation of my lower eyelids that is apparently caused from my Rosacea.  The only other thing I have found that keeps my inflammation under-control and allows me to go outside with out sunglasses is predisnoe but my Rheumatologist will not give it to me long term even though my entire family had been taken it for decades.  I talked him in a month's worth for December instead of the standard 2 weeks, it was the best Christmas ever felt like I was back to normal.  Sadly that is over but not for long since my partoid glands are flaring which means he will give me at least 2 weeks worth. 

 

IDC, 1cm, Stage IV, Grade 3, 2/20 nodes, mets, ER-/PR-, HER-
Mets Liver & Lungs
Sjogren's Syndrome
http://heidiy13.blogspot.com/
http://heidyplayscalediorama.blogspot.com/
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2015 at 7:37pm
Hydeskate,

Congrats on being NED and enjoying some holiday time.  I hope they can still figure out how to manage the NED and your Sjorgren's so that you have a good quality of life.  You give an inspiration to many and maybe a clue to researchers of your TNBC with Sjorgren's and how it may be keeping the cancer at bay. Hoping your February appointment goes well and you continue to receive good news.

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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