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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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Kellyless View Drop Down
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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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kati1983 View Drop Down
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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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kati1983 View Drop Down
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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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