Chemo resistant tumors?

Misty4575

I was diagnosed with stage one (1.2 cm) tnbc in October with no evidence in lymph nodes. I did show a small percentage of ER as well. Maybe like 3%.

My doctor chose to do chemo first as opposed to doing surgery so we could see how the tumor responded.

I did six treatments of taxol but found that it didn't reduce the size of my tumor so we stopped and moved to AC. I've had two treatments of AC and we'll have a scan on the 21st to see if my tumor is shrinking.

Has anyone had the experience of no shrinkage with taxol but did see results with AC? Anyone find they were chemo resistant?

Just trying to figure out what my expectations should be because I feel like if taxol didn't work maybe AC won't work either.

Dixie02

I just had my fourth infusion of TC on Monday, and was told that I have to do four more infusions of Adriamycin and Cisplatin because the TC didn't work. It's depressing.

Misty4575

Did you do AC before? Or is this the first time?

mightlybird01

I don't have first hand experience as my tumor was removed prior to chemo, but I have read in some places, that it is not necessarily reliable that the tumor does not reduce in size, as long as the cells in it are dead, i.e. it can happen that the tumor is still visible on imaging and can be felt, but it does no longer contain viable tumor cells. This is not a very scientific way of saying things and I don't have a reference, but maybe something you could ask your Dr. about.

mightlybird01

To add to this, I have heard of people where the tumor could no longer be felt after the second AC, but they still continued the full treatment, i.e. 4 ACs and 12 Taxols (my impression is that most people do AC first, including me). To me it sounds unusual to stop Taxol after 6 infusions, just because the tumor is not shrinking.

santabarbarian

Probably the AC (red devil) will whack it. It seems different people respond very differently on different regimens. Hopefully in a few cycles you will see improvement! But in case you need more treatment besides AC, here are some ideas to read up on, or inquire about.

Look into testing (that may have been done) on your biopsy... was PD-L1 tested? Androgen Receptor (AR)? Or other things? Presence of these receptors points to other specific treatments. There may be other actionable things if you have the diagnostic tests. There may be clinical trials that would be open to you.

Xeloda is often given as a followup to TNBC people not responding completely to their initial chemo. Carboplatin can be very good against high grade TNBC also. I did Tacotere/Carboplatin as my chemo. There are lots of different chemos out there so if AC is a bust you still have many options. But hopefully it will be effective.

Is your tumor easy to feel? Can you get a very hot heating pad or hot water bottle on it? Look up "hyperthermia" for cancer. My tumor and lymph node were both very palpable and I used a lot of heat on them (to the point of superficial bright pink 'burns'). Heat of 108-109 for one hour will badly maim a cancer cell and will not harm healthy cells. The cancer then gives off "heat shock protein" which makes it identifiable to the immune system. I did heat 2-3 times per week and always during my chemo drip.

Studies indicate that a brief fast prior to chemo or a slightly longer 5 days of very low cal eating w chemo day in the middle can BOOST the results of chemo. the fast stresses cancer cells whereas healthy cells hunker down. Thus uptake of chemo is more in bad cells. Look up Fasting Mimicking, Dr Valter Longo.

Try to maintain your health habits, walking, eating nutitiously, and rest a lot! Keep us posted and good luck to annihilate that tumor. Stay strong!

Misty4575

Unfortunately/fortunately, I can't feel my tumor. And since so many stage 1 folks have surgery before chemo, not a great sample size of those who did Taxol first (like me) and then AC.

I'm at University of Chicago with one of the top researchers for triple negative breast cancer so I really trust her approach it just seems it's a bit different than the norm.

However if I find that I am chemo resistant, she has mentioned xeloda, immunotherapy and other options depending on what the pathology looks like and what my residual cancer burden is...

I'll know more on the 21st!

santabarbarian

Crossing fingers! The integrative Onc. I saw is in Chicago as well - Dr Keith Block in Skokie.

mightlybird01

Misty4575, definitely trust your oncologist at UofC! It may be unusual, but well worth it I am sure. I had most of my treatments at UofC, there is no doubt in my mind that you can trust your oncologist and btw, Dr. J is brilliant too.

Misty4575

Dr. J is my surgeon!

Dr. Nanda is my oncologist.

And thanks!!

mightlybird01

My TNBC friend had Dr. Nanda, I had Dr. Flemming, just because I had a personal relationship with her through some other friend, who works together on research projects with her. They all work together anyway. Dr. J did my mastectomy (no recon) and everything went very well. I think you are in very good hands and can relax :-) as much as this is possible with such a diagnosis. Does not mean that you don't always have to be your own advocate, which is what this group is for.

Dixie02

The four cycles of TC were my first. This past Monday was my fourth transfusion, and I start Adriamycin and Cisplatin on February 3.

I have heard that the tumor may die without shrinking away, which is what I thought may have been happening in my situation, but it now feels bigger.

What are the odds that the tumor metastasis during this time? It's not small. Could it get into new lymph nodes, for example?

Misty4575

Are they doing ultrasounds or MRIs? I would request one for peace of mind but I think it's unlikely to grow or metastasize that quickly while doing chemo.

JLG7808

I was diagnosed with stage 2 triple negative. Did 3 sessions out of 4 of AC every 2 weeks and saw no shrinkage. It actually grew a little. Went straight to a lumpectomy and will start 12 weeks of taxol this week. They were able to get everything out with clear margins and had not spread to the lymp nodes. 

santabarbarian

Are you getting the tumor tested for actionable targets? PDL1 or AR? I would do that if I was you as it might suggest sensible follow up care. To me it is extremely important to defeat TNBC as thoroughly as possible from the start and be aggressive. Ask your docs which subtype of TNBC they think you have as they all behave differently.

Secondarily there are dietary, exercise, & other practices with specific advantages to defeating TNBC. I believe in the multi prong assault, especially for high grade, aggressive TNBC. I think your doctors did the right thing to get it out asap. I hope the taxol is effective for you and the SEs stay reasonable.

Misty4575

I will confirm what tests she is going to do on the tumor but do know that Xeloda will most likely be part of my follow up care. She is also hoping to get me in an immunotherapy trial as well.

JLG7808 is going with Taxol. I did 6 treatments of that first and it didn't work either.

Misty4575

@ JLG7808 I guess with the tumor out, they can't "see" if it's working. Did they mention Xeloda or anything else?

mightlybird01

Misty, did you get results of your scan yet?

Misty4575

I did. Unfortunately, the tumor hasn't changed significantly. We are doing the lumpectomy on Feb 5, followed by 33 radiation treatments, followed by Xeloda and capped off with an immunotherapy trial if I can get in....

All this for 1cm of bad cells...crazy isn't it?

mightlybird01

Thanks for the info Misty. I totally agree, it is crazy. Unfortunately, we are right in the middle of major developments with TNBC (new drugs and new ways to classify the heterogeneous population of subtypes within TNBC, that would allow a more targeted approach). None of them have become standard yet and so we are left with whatever is considered best at this point in time. And on top of that, no treatment will ever be perfect, there will always be a balance between advantages and disadvantages of any given treatment.

You will get more info once your mass is removed. Keep us updated. And good luck with the surgery.