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Taxotere and Carboplatin - Round 2

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kati1983 View Drop Down
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    Posted: Aug 14 2019 at 3:24pm
Hello,

This is my first post to this forum, but have been searching and reading posts over the last few months. Thank you to those who have been willing to share and help.

I am 35 y/o, diagnosed 9/2018 with Stage IIB ypT3 N0(i+)(sn) grade 2 triple negative invasive ductal carcinoma. Initial mass was 2.5 x 1.2 x 2.7 cm. Mammograph was on 9/6 and biopsy was on 9/17. Genetic test panel was all negative. I did one round of fertility and preserved 3 embryos during the month of Oct.

I am in the SF Bay area and was able to get into the ISPY trial at UCSF with Pembro (immunotherapy + Taxol). By the time I started this treatment on 11/1 an additional mass had formed where they had taken the core biopsy. The Pembro/Taxol combo did not work for me and overall extent of disease grew by the end. We switched to A/C for 5 rounds. First 2 rounds showed dramatic decrease of disease, but additional 3 rounds showed no reduction. I had a partial mastectomy (04/30) + re-incision (05/30). Final surgical sample was 6.6 x 2.4cm with 1 neurotic lymph and 1 lymph w/ trace.  I was supposed to start radiation immediately after, but had issues with the re-incision healing, which took 10 weeks. 

I was supposed to start radiation this Monday (8/12). On Friday I realized an area I thought was scar tissue was a lump. On Monday, a needle biopsy confirmed it was a tumor. 

My doctor is proposing 6 cycles of Carboplatin + Taxotere every three week. He is also offering Carboplatin + Gemcitabine as an alt. His guidance is to do CT because it is the most aggressive. I have been getting second opinions from Stanford where there are 2 TNBC specialist. They are both on vacation until this Monday. Ermm

I am so nervous to wait for them to weigh in, even if it is only a few days, because it seems to have gotten larger even in the last few days, but feel it is necessary to have a 2nd opinion + Stanford has several TNBC trials that I want to learn more about. 

I know chemo is very effective with TNBC but am also nervous about my tumor becoming chemo resistant or more aggressive with more chemo. 

How does everyone here feel about waiting those few extra days? Is it worth getting the second opinion? Getting a third opinion seems out of the question because I do not want to delay treatment like I did last time. 

AC sucked but was tolerable for me. I was able to counter balance the side effects with acupuncture, herbs, diet, mediation/yoga and walks in the woods. How does TC compare? Are there any long term side effects people have? Is there any other combos out there people have received after ACT that worked? Any other herbs/supplements/foods that have helped to make the chemo worked better? 

I want to cure this thing, but am wary of destroying my body and immune system, especially since everything up to this point did not seem to work. 

Any advice, guidance or reassurance would be beautiful. 

With Light,
Kati 
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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: Aug 14 2019 at 7:38pm
Kati,

Thank you for sharing your story.  Personally, I'd go with the second opinion.  If it's only until Monday, the wait won't be too long and it will help you make the best decision.  I think second opinions are golden and worth a short wait.

For some reason, some people's tumors actually grow while on a taxane (Taxol, Taxotere).   https://www.sciencedaily.com/releases/2019/01/190101094531.htm   Ask them if you could be one of them and if Caboplatin/Taxotere is the best choice?  I had Carboplatin and Gemcitabine with my recurrence and got to no evidence of disease after 2 cycles.  Ask about this combo.

Let us know what you decide to do.  It's such a hard decision as everyone is different and doesn't always respond to the same treatment. 

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 Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Aug 15 2019 at 2:13am
I'm with donna , get the second opinion. Have chemo scheduled to start the next day - you can change the drugs at the last minute if you want to do the Stanford offered chemo. I basically did this when I had a recurrence, I was scheduled to start chemo 2 days after my second opinion at MD Anderson. I went with the chemo recommended at MDA, was able to change drugs without moving my chemo start date.
I hope I'm not out of line saying this...But I'm a bit pissed on your behalf that your doctor didn't hit you, a 35 year old with a tumor this big, with A.C. Right off the bat. All studies say it's your best bet with TNBC, and they know the younger the patient the tougher the disease. Especially knowing you had to take the time for fertility! Clinical trials are important, but your stats make that decision seen far too risky IMO. 
I'm so very sorry you're having to go through this! What a tough, tough ride you've been on. Go to Stanford and see what they say, and please let us know what happens. 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 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 kati1983 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 15 2019 at 12:29pm
Dear Kellyless & 123Donna,

Thank you for your quick feedback and caring comments. I am scheduled to start on Tuesday, Stanford is weighing in on Monday. 

I am leaning towards the Taxotere because from what I can tell / am told it is more aggressive than Gem. When I asked my oncologist at UCSF about my resistance to Taxol, and Taxotere being the same family, he told me they were more like cousins and that people still respond to Taxotere even if they did not to Taxol. Any idea if there is data to support this?

Kellyless, not out of line at all! I've already passed through and processed my feelings of anger with all this, but I appreciate the reminder. Starting with A/C was my other option. I chose to do the trial because it is a phase 3 and their early data was showing 60% pcr rate. I was told the pcr rate with the standard of care was about 25% (not sure if that is the exact number, but it was a huge difference). Because of this, there was the chance that I would have gotten the immunotherapy and not had to do AC. Stanford agreed with the path as well. Looking back I too wish I had just done the standard of care route, but I can't change the past.

Would it be possible to share with me who you got you second opinion from at MD Anderson?

THANK YOU
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 15 2019 at 11:30pm
kati,

Ask the Stanford oncs about Gemcitabine vs Taxotere.  I can only share my experience.  I had Taxotere and Cytoxan as my first line of treatment.  A year later we found the recurrence to internal mammary nodes (now stage 3).  Taxotere didn't work for me.  My onc thought my tumor may have not responded to taxanes and wanted to try something else and hit it hard.  I got into a clinical trial with Carboplatin and Gemcitabine and the study drug.  There was no evidence of disease after 2 cycles, which was remarkable.  My recurrence couldn't be removed surgically so chemo and radiation was the only option I had. 
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 kati1983 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 22 2019 at 6:14pm
Hi All,

Just wanted to give an update. I was able to confer with one of the specialist at Stanford. He said either route was "reasonable" but that if I was his patient he would go with Gem.

That was on Monday. I also got the results from my PET/CT scan on Monday, which showed another area in my back "lit up", specifically on my iliac crest. The area is very small (1mm) and a very low SUV. MRI yesterday did not confirm or deny it is cancerous, only that it looks suspicious so I am waiting to have a biopsy of the area. 

I was in a car accident in 2017 and have had back back in that exact area since then. This was exactly a year before I was diagnosed with TNBC. The pain in my back was troublesome enough in 2018 that I was going to doctors and that is when I found the first lump. I had 2 PET scans between then and now and it never showed up. During my chemo treatments the pain basically went away, but came back about 3 months ago. I always assumed it was some type of damage from the accident, particularly because it never showed up in the previous scans and stretching/exercise/yoga seemed to help it.

Looking through some posts on this forum, there seems to be a trend where mets develop in areas of weakness or inflammation. 

I have the team at Stanford teed up and waiting to weigh in once I have the biopsy results. I have all my fingers and toes crossed that this is just something else - my UCSF oncologist said it could be a benign mass.

Contemplating a third opinion, but not sure where would be best given my location in the Bay Area. Feeling lost and lowest of the low, but refuse to not try everything I can 150%.

Thanks in advance,
kati 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2019 at 1:02am
if you can get a 3rd opinion someplace great, like MD Anderson then great do it. I wouldn't delay restarting chemo for a minute tho, I would start that at the first opportunity. Just my gut reaction, since Taxol didn't work for you, why do another taxane when you have the gem as an alternative? They are both taxanes that kill cancer the same way, so closer related than cousins I'd say. Taxotere is NOT stronger or more effective! The drug company marketed it as such, but studies proved that not true. The FDA stopped them from making that false claim. Ultimately Taxol over 12 weeks proved the stronger more effective drug by a bit. The big difference is what they're dissolved in to make them injectable, which only matters if your allergic to one of those things - but those things are not involved in the cancer killing properties. 
This time, while trying to figure out what treatment to do, while waiting on important test results is just an awful time. So much stress and anxiety! Do not hesitate to ask for anxiety drugs or sleep meds or whatever it takes to lessen your misery thru this awful, tough time. We are here for you! Let us know when you get some answers, you'll be in my thoughts. Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 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 kati1983 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 06 2019 at 8:14pm
So the lesion on my pelvis is cancer - same as breast but is HER2 0. (Primary tumor is HER +1). 
While I was waiting for the results I got a second (Stanford) and third (MD Anderson) opinion. All 3 of them plus my surgeon, agree that taking Sacituzumab is my best option - this is an immunccojugate that targets a very lethal chemo to the cancer cells only. 

UCSF has a trial that was closed, but I found out today that by some miracle (I think my surgeon making many many calls) were able to get me on to the trial. It is a random 1:1 trial though, which I did not know until today, which means I could get regular chemo (either Xeloda or Eribulan). If that happens I will most likely not do the trial because I could get those anywhere and wouldn't have to trek all the way up to SF. 

UCSF onco insists I need systemic treatment to extend my quality of life for "as long as possible". 

Stanford doctor agreed with sacituzumab as best option, BUT at the end basically said, if I was you I would just surgically removal the recurrence at your breast, rad the met on your bone and take Xeloda. He has a patient with mTNBC that did this and has had no recurrence for two years and her mets were in her brain. 

THEN when I met with MD Anderson yesterday, which by the way was AWESOME, we talked at length about how I am oligometastatic (only 1-3 mets) and how the theory is currently changing around how to treat it differently than reg met. There are studies currently running to see what best outcomes are. He agreed that saci was best option, but that surgery + rad + xeloda was a totally plausible path to take. He actually said best case would be to do saci to get the disease under control and possibly shrink it and then "remove myself from the trial" and have surgery and rad to "cure" myself. Especially since the trial is really targeting people with more mets and is just exploring PFS and OS. Cool This is the option I like best. 

SO I was so happy when my doctor called today to tell me they got me on the trial and then totally crushed when mentioned it was randomized - they never told me that!! When I told him about the option of rad + surgery he says he doesn't think it is a good idea because radiation should be saved for "later on". He also thinks trying to get a "complete response" at this point isn't worth it. I realize I need to switch oncologists, but I also do really think the trial drug is my best bet at the moment.

Lastly, because I had such an issue healing from my last surgery, my surgeon is very wary to operate on me again, at least so soon. The breast tumor is SO close to my skin that I don't think she could get clean margins so I would need rad even if I have a mast. which i think would limit my ability for reconstruction. But I did find this fascinating article which somewhat supports the gut feeling I have about getting as much disease out of my body as possible: https://academic.oup.com/jnci/article/102/7/456/900524

I will get randomized on Monday for the trial so I guess wish me luck! I feel like everything is a hot fiery mess and I've just made all the wrong choices. 

Sorry that was a lot. And yes, been taking some anxiety drugs to help me sleep - been a rough couple of weeks. Thank you for your support thoughts. Curious to hear what you have to say on the whole matter. 

Would you take the chance and try and "cure" yourself given my position? Or just get on the slow train of systematic drug treatment and hope something else comes along?  


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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2019 at 11:41am
Oh Kati, what a gut punch. Of course you feel like you're in the midst of a hot fiery mess! it must feel like you are living in the middle of a surreal nightmare that can't possibly be your life. And yet you are doing _everything_ right as far as I can tell. You've got both Stanford and my beloved MDA on your team - you couldn't do any better. And this bone met is very small, right? Of course you want to go with the trial and try for full remission! Not making it clear up front that it's a randomized study is an egregious error on the docs fault - shame on him. But you will be told up front, like immediately if you were not chosen for the study drug? Well thank God for that anyway. 
When/if you move on to breast surgery, are you saying you could go either mastectomy or lumpectomy? I'm a full believer in lumpectomy under the right circumstances, even with my recurrence. But having a recurrence meant that I and all my doctors thought I needed to get rid of as much breast tissue as possible. We don't know why I grow TNBC (yet? They're still scouring my genome for new mutations) but grow it I do, I lowered my chances of another brand new tumor considerably with my mastectomy (even with my pCR). On the other hand, healing issues with mastectomy are a much bigger issues than a lumpectomy, so if you need to heal before proceeding with other therapies, that could be a factor. And of course I'm also the poster child for failed reconstruction after radiation - it was bad. I'm an amazing healer - even during my months and months of wound care from that fiasco, I gashed the bejesus out of my hand and astounded my Rock Star wound care doctor at my healing ability. But not where I'd had radiation - that took 3 additional surgeries and 9 months of intense wound care. 
So that's the dead honest truth about all that breast surgical stuff and radiation stuff that I now know. I know you are much younger than I, so your perspective is different in many ways - but I have to say this: going flat is a much less dramatic choice than I ever thought. Its....simple. Effective. Dramatically anxiety lowering. And would've uncomplicated my life enormously - forever - if I'd done it at the outset. Your focus right now is a cure - saving your life so you can get back to living it. And there's certainly a chance, it is possible which is everything. My advice is focus on that, jump on every opportunity that your gut tells you is right. Any other superfluous Stuff that may be a thing in the future, that isn't about saving your life? File it in "future business" and get back to the Life Saving choices. That's where your energy goes, your focus. And you can do it! You've the best team (except that local doc that started you down the wrong path in the first place - def. Ditch that guy), and good sound options. We are with you! Please keep us updated, you'll be in my thoughts all the time. Kelly


Edited by Kellyless - Sep 08 2019 at 11:43am
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2019 at 12:19pm
Hi Kati,

Kelly has given you lots of good advice. 

Regarding your question:

"Would you take the chance and try and "cure" yourself given my position? Or just get on the slow train of systematic drug treatment and hope something else comes along?"

If it was me, I'd try everything for the "cure".  I've seen some metastatic TN women who defied the odds and are in remission/NED.  My recurrence was to an area that couldn't be surgically removed.  My onc said we are going to treat it as if it's curable and hit it hard with chemo and radiation.  That was nine years ago. 

Go with the option that you think will get you to a cure.  Your MDA oncologogist:
"He actually said best case would be to do saci to get the disease under control and possibly shrink it and then "remove myself from the trial" and have surgery and rad to "cure" myself. Especially since the trial is really targeting people with more mets and is just exploring PFS and OS."  If this is your best option, go for it. 


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 kati1983 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2019 at 6:48pm
Kelly & Donna,
Thank you again (and again!) for your sound advice. 

The GREAT news is I got randomized on Monday to the Sacituzumab!!! Even though it was a stressful couple of days, I had this feeling I was going to get it... I've been meditating a ton and it has really shifted so much for me and helped me deal with all of this.

Already had my first infusion and will have my second one this Tuesday - then a week off. My surgeon is going to put me on the schedule a few weeks out in the event we are not seeing any results.

Kelly, to answer some of your questions. Yes, the met is super small (18 x 13 mm). I spoke with my amazing radiation onco and she said it would take 3-4 sessions max to zap it. She agreed this was a great path to take. 

Thank you for sharing your story. Going flat seemed a little crazy to me before, but now I am totally down with what ever will work. Going flat honestly sounds better to me that doing recon. I told my surgeon that I was mentally planning for a mastectomy, no recon. She has already told me they do not recommend recon after rad. Technically we could try for recon before rad, but I just have a feeling in my gut that having recon would turn into a hot fiery mess (again). I know my surgeon is nervous about operating on me because I had issues healing last time, but I honestly think it is because they went back in a second time. Given I had a recur in the same exact spot like you it seems mastectomy would be the obvious choice, but I'm going to sit with it and see. At the moment, I have made peace with a single mastectomy, no recon - least amount of surgery + greater benefit. 

ONLY catch, is that because I got the trial drug I am sort of stuck with my onco (until I remove myself from it obviously!!). My husband told me he knew we would get the trial because we'd be stuck with him for a bit longer and that is how life works! 

Can't thank you both enough - I'll just be over here curing myself!!!! 
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