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Challenges with precision medicine

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    Posted: Jun 13 2015 at 7:18am
I have not posted on this forum for a while. I thought that I would wait until I have some good news to share, but things are not going so well. At the end of April, in a routine PET scan (my doctor likes to scan), mets were found in both of my lungs and the lymph nodes between them. At that time, the biggest nodules were around 1cm. It took my doctor one week to think of a plan and then I had biopsy, and ended up in the hospital for two weeks because of pneumothorax and infection. Once I got out of the hospital, a scan showed that all my tumors have already grew several mms in the short three weeks. Two new ones popped up. My doctor put me on Xtandi because the biopsy shows that the tumor that they did the biopsy was 60% androgen+. I have been on Xtandi for over a month, and several nodules grew but no new ones popped up. My doctor thinks Xtandi is effective, although he does not think a single agent could control my tumor because I have quite a few mutations which might be drivers of my cancer. My doctor had my primary tumor tested by Foundation One and found several actionable mutations, so he added palbociclib last week because I have CCND3 mutation. He also added bicalutamide to further control my androgen level. We soon found out that there is interaction between Xtandi and palbociclib. Yesterday, he asked me to stop all my medications because he needs to rethink about my treatment plan. I am so worried that my tumors will be out of control. They grow extremely fast. I got into touch with Dr. O'shaunessy in Dallas. She agrees to see me but and her assistant is still checking my insurance. I hope I can get a second opinion from Dr. O'shaunessy. I love my current oncologist. He is very caring and not a standard of care type of guy. He believes in personalized medicine based on tumors’ proteins and gene mutations, but then he had to make a lot of decisions and combine drugs that have not been combined before. It is scary. I hate to switch doctor right now, because he needs to build up the program by adding one drug at a time to see which targeted drugs really work me. In the mean time, I am searching for trials that I could go as backups. I believe that check point inhibitors like PD1 are really the future, but these trial are not open. Another option is Immu-132. I have been doing a lot research on trials. Please let me know if you come across any new immunotherapy trials.

Rebecca
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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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 13 2015 at 9:55am
Dear Rebecca,
I am so sorry you are in such a difficult place right now. I can understand your need to seek a second opinion and I personally believe you should go forward with it. (I do believe it is a travesty how insurance companies hold patients hostage sometimes... I'm praying that it is not your experience)... I will be praying for you Rebecca to find yourself in the correct treatment place. Also, for a good treatment regime to be found.
Please don't stay away from the site for fear of upsetting any of us. All of us here are waiting to offer you Support and Love.

Love and God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 13 2015 at 12:11pm
HI Rebecca,

I'm so sorry you are battling this again.  I hope you can get in to Dr. O'Shaunnessy quickly and find the right therapy/clinical trial to halt those tumors.  Please keep us posted - we worry about you when we don't hear from you.  I've battled insurance companies and they are no fun!  Hope they give you a quick approval.

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 mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2015 at 4:17pm
Hi Rebecca, two thoughts come to mind (after I picked myself up off the floor from reading your news); one is that sometimes the mixing of two drugs that create harsh side effects but are effective can be workable if the doseage is halved.

Second, have you looked into Turkey Tail? It's undergone clinical trial and proved effective in adding to the immune system for someone undergoing chemo. You might take a look at it http://www.bastyr.edu/news/general-news/2012/11/fda-approves-bastyr-turkey-tail-trial-cancer-patients   as it's got a good history.

I'm impressed with your current onc's decisions and it sounds like he's a keeper. Getting in to see Dr. O is still a good thing. Please check with Komen to see if they can give you a scholarship to help offset costs. Also, through Oprah there is a group of corporate jets who will fly cancer patients to needed clinics. You pretty much hitch a ride on a corporate jet already headed that way, no charge.

Please please do stay in close contact, we've all got broad shoulders and I can't think of anything I'd like to do more than to help a family member here.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote positive_attitude Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2015 at 10:04pm

 Thank you all for your support. I finally calmed down a little from my drug interaction scare. It turns out that Xtandi reduces the absorption of Palbocilclib by 85%. Xtandi also prevents some other drugs like Afinitor to be absorbed, so my oncologist decides to hold Xtandi and wait for a few days until Xtandi is out of my system to give me Palbocilclib again. My oncologist is giving me one target medicine at a time to see side effects and also how well it works to figure out what the drives are. I am getting impatient because my tumors have been growing since the end of April. Dr. D said that this is the only way to survive the disease. I asked him why he would not give me any chemo, he said that I might have a response but it will not last. I am also PD1 and PDL1 positive, so I asked him about adding Keytruda because from what I read, combining Keytruda with target medicines or chemo is the way to go for a cure. He is interested, but Keytruda is too expensive and there is no patient assistance program for that.

I have been pretty depressed in the last couple of days. I finally convinced myself that I am getting more option than many other people, so I should do my part of the work to take good care of myself and have a good attitude. Dr. D. called me twice on Saturday to talk about his thoughts. He is very dedicated and positive!

Mainsailset, I have been taking turkey tail since last November. It was recommended by my integrative doctor. Thank you for the information about Komen and the jets. I will look into them. I did find Dr. O'shaunessy on my insurance website on Friday and called her assistant. They will check and get back with me tomorrow. My oncologist is not a breast cancer specialist, so I hope Dr. O'shaunes would provide her view on my treatment, since she does research on future treatment of TNBC.



Edited by positive_attitude - Jun 14 2015 at 10:06pm
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 positive_attitude Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2015 at 12:08pm
For several days, I had trouble sleeping. I have a lot of anger toward my oncologist. At the end of the last year, I drove 6 and a half hours to see him because a few ladies on breastcancer.org recommended him. I needed someone to give me hope. Dr. D did give me the hope I needed. He promised me a long-term survival. At that time, I was unhappy with standard of care and I had a lot of fear. He definitely knows how to take advantage of that. He offered to give me personalized treatments that target my mutations and the proteins on my tumor. He ordered Caris and Foundation reports for me. Then he gave me a lot of chemos after my mastectomy. All these treatments did not prevent my recurrence this April. My recurrence in the lungs came when I was on chemo.

Since my recurrence, I became increasingly suspicious of his ability and integrity to treat triple negative breast cancer. He does not seem to know the latest research on TNBC. I did a lot of research on this disease. Every time when I mentioned something to him, such as immunotherapy. He would say something like that he tried immunotherapy when he was at MD Anderson years ago. It was very dangerous; patients died immediately under the needle. When I brought papers on anti-PD1 treatments, he would say things as if he already knew about these treatments. Then, he kept making decisions on the fly that scared me. For example, he gave me both Xtandi and Ibrance at the same time. I googled and found that the two drugs had life threatening interactions. Obviously he did not do much research before giving me that combination.

I started to ask for second opinions from other doctors and looked up trials. He was very uncomfortable about that and he tried to push me to add more drugs to my current regiments so that he can test to see whether his approach would work. This Thursday, he said that he would put me on me on total parenteral nutrition (TPN) so that I can get stronger faster and he would give me more combination of targeted drugs after a week. When I told him that I would think about it, he got very upset and he said, "You look like a skeleton". He kept telling me that his treatment is the only way to get long-term survival. He definitely knows how to take advantage of someone's fear to make that person surrender to his decision. After I left his office on Thursday, I called another doctor and found that TPN is a dangerous procedure and it is not justified unless someone loses a lot of weight and cannot get enough nutrition by eating.  Dr. D. said that I could do TPN myself at home and he did not mention any side effects. I was very surprised that he made this decision without even checking my weight. I know that I am very thin, but I have not been losing weight lately. I finally decided that I will move on to other doctors. I know that my decision to leave him is partly because of my anger toward him. I would warn anyone to be cautious if someone offers you "personalized or precision medicine". I think "personalized or precision medicine" will be the future, but we are not there yet.


Edited by positive_attitude - Jul 11 2015 at 12:11pm
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 Annie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2015 at 1:54pm



    Dear Positive_Attitude,   I am SO SORRY that you are going through this very frustrating and confusing ordeal. It is upsetting to read let alone go through.

                             I can understand your anger also. I am not quite sure what onc. you are going to now. Have you had the consultation yet and another opinion or is that coming?

                             All I can say is try and stay calm. Can you get something to help you sleep better from your family Dr. for now. Have you tried the Ensure and other high protein drinks to help with your weight. You seem like an intelligent lady and I am sure you are doing all you can at the moment.

                             I agree personal and precision medicine is not here yet and it may never come fully until a cure is found. We are still walking around somewhat shrouded in darkness with this disease.

                             Please do not be hard on yourself. We care about what happens next so please let us know how things go with the new Onc.   How are you proceeding and who with.

                             My heart goes out to you for all that you have suffered and are suffering and I will keep you in my prayers. Please take care.   
                             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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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2015 at 2:15pm
Rebecca,

I'm so sorry for all you've gone through with your previous onc.  I hope you can find a new onc who's knowledgeable with triple negative breast cancer and in tune with new research and clinical trials.  Please try not to be too hard on yourself.  We all have our "we wish we would have . . ." moments when looking back, but you made the best choices you could at the time with the information you had.  TNBC is still a mystery.  Please keep us posted.

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 Fats1976 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2015 at 4:12pm
Rebecca, Please send Steve a private message. His profile name is Sage Patient Advocates now,perhaps a phone call will bring a world of advice and connections to the correct people. He and all the ladies here are keen on second, third or even fourth opinions. Whatever it takes.
God Bless
Mom Dx 9/12
Stage 1c No Nodes involved.
Lump clear margins 10/12. Started 6 months of cmf chemo 11/12. Ended 4/13. RADS 28 tx 7 boosts ended 7/13. 02/14 Scans NED. 10/14 Scans NED. 6/15 Scans NED.

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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 12:26pm
Hi Rebecca,

I just now read about you problems over the past few months.  I so hope that you are doing ok now.  I just wrote on my thread "CT Scan This Morning" about my very positive experiences at the BLock Center for Integrative Oncology in the Chicago area.  Even if you are already seeing another oncologist, I think it could be very useful to go for a consultation there and have all the blood tests run that they do, which hardly anyone else does, to find out what are the problems in the terrain of your body that is allowing cancer to grow.  I have also had FOundation One tumor gene profiling and previous oncologist didn't see any actionable mutations, but Dr. Block is going to take a deeper dive into the data to see what he can find.

Do you have another treatment plan in place yet?  I had a good experience with an anti-PD1 - I would think there would be combination trials available at MD Anderson, which wouldn't be too far from you, right?  Have you investigated that? 

I urge you to stay calm.  My lung mets seemed to be growing fast when they first popped up too (and I do have some in nearby lymph nodes as well), and I know that it is really scary.  But lung mets are not a death sentence!  You do have some control!  I have been living with lung mets now since about July 2012 and there has been no spread yet outside lungs and nearby lymph nodes.  I think my whole anti-cancer diet and lifestyle have been the key to preventing further metastasis.    The largest one is now 5.5cm and there is another about 4.8 cm and multiple others, but my lungs function fine!  I can exercise and I feel great (because I am not on any chemo) and my only problem is the lung mets cause irritation and mucus production that leads to a pesky persistent cough.   I take cough syrup and suck on cough drops, which helps.

Please send me a PM if you want to talk in more detail about the lung mets, treatment options, etc. 

Peace and healing to you,
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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