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CT scan this morning

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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: Mar 26 2015 at 7:32am
Hi Beth,

I pray that you receive guidance for your next step.  Have you talked to your other oncs about options?  This probably isn't an option with your tumor burden, but is surgery a possibility?  My friend who is stage 4 peritonneal cancer has had several debulking surgeries.  The last one was in January where she had a similar situation with a tumor in a lymph node encasing the a vein going to the heart.  The onc was against surgery (she's had about 4 of them), but her surgeon at SCC said he could do it.  They did the surgery and was able to remove all the known tumors at this time.  

Hugs dear friend as you consider your options.

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 stream Quote  Post ReplyReply Direct Link To This Post Posted: Mar 27 2015 at 1:51am
Quote Have you talked to your other oncs about options?  This probably isn't an option with your tumor burden

I agree with Donna.

Quote So now I am trying to decide whether to start on eribulin (Halaven), or to just focus on all of my natural, alternative and complementary medicine approaches for a while

Natural medicine for me is not for late stages of cancer in the meaning of "single agents". They alone will not stop cancer in most cases.

Well. What I think you could consider is resensitising. There are perhaps natural products wich help sometimes that e.g. Taxol works again.
The only natural product from wich I read helping in a late stage of a heavily preatreated patient is Graviola.

Patient with Metastatic Breast Cancer Achieves Stable Disease for 5 Years on Graviola and Xeloda after Progressing on Multiple Lines of Therapy

But this will be a special case of a tumor mass wich relies on glycolysis. [as a result of many chemo-therapies and "selection".... survival of the fittest] And Graviola would be not without side effects in long term usage wich are to consider first.


So - donīt give up! Perhaps surgery is a way, perhaps priming the tumor mass and looking if a hm... acceptable chemo like paclitaxel weekly will start to work again.

[Uh.... and sorry for my bad english - normally I read only english papers ^ ^]
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Post Options Post Options   Thanks (0) Thanks(0)   Quote positive_attitude Quote  Post ReplyReply Direct Link To This Post Posted: Mar 27 2015 at 6:50am
Beth,

I have not communicated with you before, but I have been following your postings and learned a lot from your experience. I am wondering whether it is time for you to consider doctors who do not follow the standard of care.

I would recommend that you consult with Dr. Mark Rosenberg (http://www.newhopeforcancer.org/), an integrated oncologist. He does chemo sensitive testing, metronomic low dose chemo in addition to a variety of alternative treatments including copper depletion. I consulted with Dr. Rosenberg on Skype a couple of times and I really like him. He is on the cutting edge of cancer research and is extremely caring. For example, he uses latest technologist such as circulating tumor cell test in addition to tumor marker to monitor his patients. His online consultation is not expensive either.

Another doctor that I would recommend is Dr. Karel Dicke at Arlington Cancer Center (http://www.arlingtoncancercenter.com/meet-your-cancer-doctors/karel-dicke/). I have been seeing Dr. Dicke since Nov. Dr. Dicke is a fighter. He does not give up on any of his patients. He does not follow the standard of care. He monitors his patients very closely and I have met many late stage cancer patients of his who have lived a long time. You could PM me if you need more details about these two doctors. After seeing them, I feel confident that I could survive this disease.

Best,

Rebecca






Edited by positive_attitude - Mar 28 2015 at 9:47pm
DX IDC TNBC May, 2014, 4.7cm, 5.8cm on Taxol. Taxol 4 weeks, AC 6. double mastectomy OCT 2014. 1.8cm residual in breast and 3mm a lymph node. BRCA-. 11/17 Abraxane,5FU.11/20, rads, 1/19 FUMEPx2
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Post Options Post Options   Thanks (0) Thanks(0)   Quote btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 28 2015 at 1:57pm
Hi all,

Thanks so much for your positive thoughts and ideas!

I have asked repeatedly about surgery, and 5 different oncologists at MGH, Siteman Cancer Center (Wash U Med School in St Louis) and University of Chicago over the past 1.5 years have said it's not a good idea.  Too many tumors.  We couldn't safely remove very many of them, and while I would have to be off chemo pre and post surgery, it would give the others more of a chance to grow.

I have scheduled treatment with eribulin for Monday April 6, but if my coughing is better by then or if my intuition is telling me not to do it, then I will postpone it.  I had a pranic healing treatment yesterday and did yoga this morning and am juicing lots of vegetables and fruits  and am taking my various supplements and am feeling peaceful and well :)

Rebecca, I have definitely been thinking about see an integrative oncologist, so thank you very much for your recommendations!  ANd I wish you the best in your healing!

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 TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Apr 02 2015 at 5:25pm
Hi Beth,

I hope you are feeling better and the cough is gone (fingers crossed!). I see that you have a scheduled chemo treatment for this coming Monday. I wanted to wish you good luck with this chemo, assuming you go through with it. I know you have been through so many different chemos, so I really hope this one works for you.

I'll be praying for you. I hope you have a lovely Easter!

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 btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 07 2015 at 9:18am
Hi all,

Thanks for the good wishes Lisa!

I did start on eribulin yesterday afternoon and it was a breeze!  I had no anticipatory nausea and I feel really hopeful that this drug can shrink the lung mets and get rid of my cough.  I was only at the cancer center under 3 hours from start to finish yesterday and I feel absolutely fine so far.  And I am excited to be trying a brand new delivery form of Neulasta called an On Body injector !  Because of my history of chemo knocking down my WBCs, my onc agreed to proactively treat with Neulasta even though I am starting with a total WBC count of 8 and neutrophils at 5.  The Neulasta will be delivered automatically this evening from a small plastic device attached to the back of my arm yesterday after I received the chemo drug.  After it's finish, I just take it off and throw away.  How easy is that?

Peace and hope,
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 TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Apr 07 2015 at 12:41pm
Beth,

Is that a transdermal patch delivering the Neulasta? 

Good to hear the eribulin was a breeze. How quickly are the doctors going to assess its effectiveness? 

Best wishes,
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 btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 07 2015 at 1:04pm
Hi Lisa,

No, it's not a patch.  Much clunkier than that, but still better than making another trip to the hospital for an injection.  It's a small plastic device (maybe about 2x2 inches wide and 1/2 inch tall) that is attached with adhesive.  When it's attached, it get activated and a small needle and tiny cannula actually pops through the skin.  It stays there for 27 hours at which point the Neulasta is infused over a 45 minute period.  

I will probably have a CT scan in 8 weeks to check on the size of the lung masses and enlarged LNs in the lung area.

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 Adnerb Quote  Post ReplyReply Direct Link To This Post Posted: Apr 07 2015 at 3:55pm
I am hoping that the eribulin is working.  When the cough goes it's a good sign that something is working.  Before I went back on the Abraxane my left hemisphere hurt every time I coughed, sneezed or laughed.  After just one infusion these symptoms started going away.  Today I can laugh, sneeze and cough as hard as I want.
'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 debB Quote  Post ReplyReply Direct Link To This Post Posted: Jul 02 2015 at 4:11pm
Hi Beth,

Haven't seen anything posted from you in ages. Hope you are doing well and enjoying your summer with your girls. Been thinking of you and just wanted you to know...

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 btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 25 2015 at 12:05pm
Dear Friends,

Sorry it's been a while!  

Here's the update.   Eribulin didn't help at all unfortunately.  We did a CT scan in early June after 8 weeks and some of the lung mets had increased in size.  At that point, I decided to finally go to the Block Center for Integrative Cancer Treatment in Chicago for a consultation, and I also decided that I am not doing any more toxic chemotherapy for the time being.  The only problem that I have from the cancer is a persistent cough, but the chemo drugs cause me lots of problems, including anemia and knocking low WBCs, which of course must prevent my immune system from fighting the cancer as well as it could.  I feel like the last 3 chemo regimens I have been on have hurt me more than they helped, so I am finally listening to my intuition and stopping it.

I LOVE the Block Center and Drs. Keith Block and Dr. Kahn, and the nutritionist/dieticians and the bio-behavioralist that I met with there.  I went once in late June and again 2 weeks later to get all my test results.  They ran a large panel of blood tests to determine what can be improved in the terrain of my body in order to optimize my health and fight the cancer.  They have recommendations for supplements and foods to eat, and lifestyle modifications to address every analyte or assay that is out of whack. For example they found that I am low in Vit C (despite my huge intake of vegetables and 3 fruits/day) and low in Zinc and CoQ10.  My VIt B12 was high (because I was taking a supplement in a misguided effort to help the anemia.)  I didn't know that Vit B12 can help fuel some cancers!  So of course I dropped that immediately.  Fibrinogen (involved in blood clotting) was too high (High Quality Fish Oil from Nordic Naturals has already fixed that).  Some indicators of inflammation were high and my natural killer cell activity was low.   THey provided me with an individualized supplement program (with specifics on what brands to buy, and you can also buy them all there are from their sister nutraceutical company to make it easy and to ensure you are getting high quality.  Many of the supplements have been custom designed by Dr. Block for cancer patients.  THey also provide very specific dietary, exercise, and stress reduction recommendations.

They also recommended Doxil + Avastin as chemotherapy, and they dose in novel ways, together with glutathione and IV Vitamin C on the day following in order to minimize side effects.  I declined that option for now.  And the people at the Block Center are respectful of my choice.   I wanted to see how I do by focusing all my health care energy on serious adherence to the anti-cancer diet (you can find it in the book Life Over Cancer and discussed in the book Radical Remission also) and green juicing, Reiki and Pranic healing, meditation, prayer, exercise, etc.  I also tell my immune system multiple times per day to dissolve the tumors in my lungs and rid my body of all cancer cells.  I would have thought this sounded crazy at one time, but I have read about many patients with chronic illnesses who believe that this kind of specific self-talk helped heal them from disease.

And so far, so good.   I had my last chemotherapy dose about 2 months ago, and now I feel better than I have in a long time.  The cough is not worse, and my energy level has improved tremendously, and my hair is growing back, and my RBC and WBC counts (including lymphocyte and neutrophil populations) are all normal (without any help on the WBCs from neupogen, thank you very much!)   I am working full time, traveling, gardening and raising my kids and enjoying my family and friends, and am so so grateful for this time of just being able to live normally.  

Rebecca, thank you for encouraging me to try the integrative oncologist approach.  I did look up the doctors that you recommended, and they look good too!  Chicago is driving distance for me and I have friends who have gone to the BLock Center and I admire Dr. Block's book so much that I felt I should go there.

And just for the record, I am open to trying new immunotherapy drug options in the future if they have very low toxicity profiles.  I am tracking all the anti-PD1 and anti-PD-L1 combination trials and also new drugs that target 4-1BB and some others.   As I have discussed before, the anti-PD1 trial that I was on was keeping me stable and I had no side effects (the drug now named Keytruda) but unfortunately I got disqualified from the trial because of a 1mm increase in the size of one mass after achieving stability.  I think that immunotherapy is the key to curing most cancers and in 20 years we will look back at all of the standard non-targeted chemotherapy in use now as the dark ages!

Peace and love,
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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2015 at 11:38pm
Hi Beth,

It's so good to hear from you! I like how you approach things and make informed choices. It sounds like the Block Center was a good choice for you. Will they be monitoring you with scans? sounds like you are feeling better and enjoying life and family.

Take care,

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 denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 27 2015 at 12:07am
Beth,
So happy you are feeling better and the BLOCK CENTER defientely an excellent choice!
Here for you....
Denise
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Jul 27 2015 at 12:35pm
Hi Beth,

From what you describe, it sounds like you have made the best choice for your overall well-being. I look forward to reading your updates as you continue along this path. Your experience and wisdom on how to create an alternative healing approach to cancer is so important and could really benefit many people. 

Best wishes to you :)
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 btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 05 2015 at 1:17pm
Hi all!

I appreciate all you positive wishes and prayers so much.  I was feeling well all summer (except for the coughing) and got to do a lot of traveling and work is going very well.  Then about 3 weeks ago, shortly after I returned from San Diego for a wonderful visit with my daughters to see my brother and his family, the coughing increased and I started feeling more tired and it kept getting a little worse each week.

So I decided I should look at trying to get into another immunotherapy trial or pursue one of the options that were recommended for me by the doctors at the Block Center. Just as I was starting to make phone calls to get the ball rolling, I got a call from my oncology nurse at the Siteman Cancer Center here in St Louis, and she said that my insurance had agreed to pay for Keytruda!  Dr. Ma (my onc here in St Louis) had recommended that we try to get me back on Keytruda (Merck's anti-PD1 immunotherapy drug). 

I took Keytruda (then call MK-3475)previously in a clinical study at Univ of Chicago in late 2013/early 2014 and it was keeping me almost completely stable, with no side effects, but when I hAD a 1 mm increase in the largest lung met at 5 months into the treatment, it disqualified me from the trial.  Keytruda is now FDA approved for treatment of metastatic melanoma but not for TNBC, so I didn't dream my insurance would cover it but we were trying to get Merck to provide it for free or reduced cost under a program they have.  ANyway, hallelujah!

I had the first dose this past Monday, and I also had a CT scan to establish a baseline as I begin this treatment.  In the CT scan, they found what looked like an area of infection in my right lower lung.  So of course this is scary, but I was also relieved, because if we can clear this up with an antibiotic (which I started yesterday), then I should feel better very soon!  Perhaps the lung infection is the cause of the increased coughing and low energy level, rather than the cancer.  The cancer is still, miraculously, confined to just the lungs and nearby lymph nodes.

So I feel like I am on the right track now!  I will report more good news soon :)

Peace and love and strength to you Dear Friends,
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 anndooleyallison Quote  Post ReplyReply Direct Link To This Post Posted: Sep 05 2015 at 8:14pm
Do you have to have a specific marker for Keytruda to be successful?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote megarita Quote  Post ReplyReply Direct Link To This Post Posted: Sep 06 2015 at 10:40pm
So glad to hear your great news Beth, do keep us posted!

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Post Options Post Options   Thanks (0) Thanks(0)   Quote btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 07 2015 at 12:52pm
Dear Friends,

It has been over 3 months since I started back on Keytruda, and I am cautiously optimistic that it is helping to get the cancer under control.  I had a bad patch about 6 weeks ago when I had a lung filling with fluid and a partial collapse of the lower lobe of the right lung.  It became pretty difficult to breathe.  But I had a thoracentesis (draining the fluid from the lung) and then some palliative radiation to shrink the lung mets that were causing the collapse.  

The fluid draining helped a lot (I was literally drowning - they pulled 1.4L of fluid off!), and since the 10-day course of rads was completed over 3 weeks ago, I have had continuing gradual improvement.  I cough less, and don't have shortness of breath very often.  My energy level is still pretty low, but gradually improving, I think.  I have anemia (docs say it is caused by Fe-dysregulation, induced by the chronic inflammatory condition - cancer - and there is really nothing to be done about it), which probably accounts for the fatigue.  I am still able to work part-time from home, which really help me to feel normal and keeps me sane!

So anyway, I am much better than I was 6 weeks ago, and am very grateful that it looks like I will be able to enjoy yet another Christmas - yay!!!!  My family and friends have certainly pulled me through these past 2 years.  I have been very blessed.

Happy holidays to all!

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 megarita Quote  Post ReplyReply Direct Link To This Post Posted: Dec 07 2015 at 2:09pm
So glad to hear the great news! The lung fluid is very scary & I'm glad to hear they were able to fix it with radiation. Sounds like the Keytruda is helping. Have a very Happy Holiday! Megan
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Dec 07 2015 at 2:38pm



   Dear Beth,   You have been through so much!     I am sorry that you had to go through this with your lung. I am so glad that you are feeling better every day. You are so inspiring.

              I wish you a Wonderful Christmas!
              Keeping you in my prayers.


              Love, Annie
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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