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Tumor not shrinking after 6 Taxol infusions

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annao View Drop Down
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    Posted: Aug 26 2017 at 7:45am
Hi All,

I am Anna and I am here for my mother.

She was diagnosed with stage 2 TNBC in March this year. We have had four infusions of EC (the red devil) every three weeks followed by weekly Paclitaxel (or Taxol) infusions. We have had 6 of the latter so far and it showed that the tumor has not shrunk at all since the last EC.

For full story, my mother's tumor was 2.6cm when it was diagnosed and it shrunk to 0.77x0.44cm after the fourth treatment of EC. Since then the size has been unchanged. The doctors say that as long as it is not growing it means taxol is working and there is no need to worry but I am wondering if anyone else has had a similar experience?

We will be adding Carboplatin to taxol starting this Tuesday the 30th as they said that a new study suggests that it helps further shrink the tumor in combination with Taxol.

I would love to hear from you. We are getting treatment in Munich as this is the best cancer treatment for us outside of US. I trust our doctors but we are feeling very lonely in our battle. There are days that I feel absolutely helpless and overcome with fear.

I lost my father to cancer two months ago due to metastatic bladder cancer. As my mom was going through treatment I was the primary caregiver of my father and saw the agony he went through. I don't think I will survive if I have to go through it again and am praying for my mother's survival.

Thank you. I wish health to everyone who is going through cancer treatment.

Anna
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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 26 2017 at 12:56pm
I had a recurrence last year and had similar results on Carboplatin and taxol. Half way thru I had significant reduction. At the end it scanned on ultrasound about the same size as your moms. I was.... Distraught. I was given the option of more chemo or just doing the mastectomy. I was extremely sick on chemo this time, my local oncologists agreed with what my gut was saying - it was time to stop chemo. My amazing brilliant MD Anderson oncologist leaned toward more chemo. One of my hardest decisions yet, but I went with my (extremely sick) gut. And I had a PCR - what showed up on the scans was the tumor bed, the remains of my dead tumor. So I think the question to ask is, is it possible what they see is NOT tumor anymore?

Edited by Kellyless - Aug 26 2017 at 12:56pm
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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 annao Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2017 at 7:28pm
Kellyless,

Thank you very much for your response. We are seeing another oncologist this week and I will ask him that question.

When we met with the current oncologist this past week she did mention that TNBC 'does not really like Taxol' i.e. doesn't respond well when administered on its own. To my question on why it wasn't given with carboplatin to start with she said that they don't usually combine the two when the tumor is not too big (I guess 2.6cm is not too big although it seems very big to me!) unless they see that it does not respond well to Taxol alone. I am praying that it is what you said it is: the remains of the dead tumor. We'll see.

Apologies if I am asking the obvious but what is PCR? I am not that good with acronyms in English as all our medical records have been in German so far.

Thank you again. I wish you all the very best in your recovery!

Anna
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2017 at 7:30pm
Anna- your mother's treatment sounds about like she would have here, in USA.

My wife's tumor was reduced by 75% with chemo BEFORE surgery

It's not unusual to have residual tumor not responding to the chemo, this is called a "partial response" not a pCR (pathological Complete Response), a complete response(pCR) happens about 20% of the time, on that, maybe it's 15-25% not sure about latest data on this.

The fact that her tumor reduced in size, initially, and then flat-lined is not unusual. In my talks with radiologists, and ultrasound techs, usually the tumor becomes more liquid ("cystic") which shows the chemo is working, then it's hard to tell, until the tumor is removed, and the pathologist is the ultimate expert giving the report.

My wife had Carboplatin also, as neoadjuvant chemotherapy (before masectomy surgery) 

Not sure if your mother is having surgery?

 


Edited by gordon15 - Aug 28 2017 at 9:41am
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2017 at 7:37pm
I'm not sure why an oncologist would say TNBC is not killed by Taxol, my wife has (2) oncologists (one specializing in BC and one (from India) specializing in all cancers) and they mandated her to have Taxol after her surgery, they said it was urgent to mop-up any stray TNBC/metaplastic w. squamous cancer cells (aggressive form of TNBC)
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote annao Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2017 at 7:39pm
Gordon,

Thank you! This makes me happy that we are on the right track.

Yes, she will have surgery in October, we have 6 more weeks of Taxol-Carboplatin infusions, then two-week break followed by surgery and radiation.

One opinion here was not to give her Carboplatin now in case there is recurrence. I was explained that in the case of recurrence Taxol would not work and they would use Carboplatin instead. Now we have to decide whether we want to be aggressive and hope for the best or leave some dry powder in case of recurrence.

Thank you for your response.

Anna
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Post Options Post Options   Thanks (0) Thanks(0)   Quote annao Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2017 at 7:42pm
That surprised me as well. I am hoping the other oncologist we are seeing has a better explanation.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2017 at 7:49pm
My wife had Carboplatin-Gemzar chemotherapy before surgery (neoadjuvant chemo) then single mastectomy, then Taxol AFTER she healed from surgery, usually the docs want to do it in 30-45 days, to kill any stray cancer cells.

I'm not familiar with Carboplatin-Taxol cocktail , but it's best to go with the doctor's recommendations, especially if your mother is already started on a therapy-regimen, oncologists usually are reluctant to get emotional,  and change course, unless a tumor is growing.

As far as recurrence goes, it's best not to "second-guess" the current drug therapy based on the unknown future. The genetic testing and discovery drugs are happening every day, and the future (6 months) can open up new possibilities.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2017 at 4:21pm
I'm not sure why she'd say that about Taxol either.  I had the traditional Dose Dense AC (same as your EC) the first time round, 4x every 2 weeks, then followed Dose Dense Taxol on the same schedule (they've moved that to smaller doses weekly these days to avoid neuropathy with the Taxol) and it obviously worked quite well, considering I had over 7 years disease free after.  The reason I did Carboplatin this time is the 'red devil" isn't recommended a 2nd time, unless nothing else is working or you're stage 4 because of the risk of  permanent damage like heart issues.  

I'm sorry about the acronyms - Gordon is correct, pcr is when the pathology done from the mastectomy showed I was disease free. I never really had any hope of that because of the likelihood percentages they give that Gordon quoted, I was fully expecting to start another chemo regimen post surgery for 6-8 months (Zeloda I think?) especially after it showed up as large as it did on the final scans.  My oncologist tells me now that this is the case most of the time - with a tumor over 1 cm to begin with, there will probably be "something" showing on the scans even if you've achieved a Pathological Complete Response. 

Here's a question I don't have an answer to - why don't they do an MRI with contrast to see if there is cancer lighting up, or to measure the actual size of the residual Cancer and not the tumor bed?  It didn't matter in my case - I had such terrible side effects this time I was DONE regardless of what further testing would've shown.  Perhaps someone here will know the answer to that.

And NED is No Evidence of Disease - after you've completed treatment, that's the term the doctor uses on your ongoing follow up appointments, when they can find no signs of cancer :) I just had my first quarterly follow up with my oncologists, getting the NED stamp is always a gift. 

Just an FYI on the Carboplatin - it's possible she'll need to change up the anti-nausea meds with the change in chemo.  That was one thing that did make a difference, when I got off the Zofran that had worked well the first go round, and changed to Emend.  (the other thing was marijuana, something I hadn't done since high school and never liked, but it helped the most of anything I tried this time!)

Your mom is blessed having such an involved and caring daughter!  As a mom I can tell you that the support of my kids thru this is just the greatest gift I'll always be grateful for. 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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 annao Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 2017 at 9:19am
Kelly,

Thank you very much for explaining everything in such detail. I have been doing research on my own in the past few months but it has not been easy to make sense of everything and fight my fears every time I hear doctors say something new.

We had the first cocktail of Taxol and Carboplatin today, mom is feeling very tired and achy but no nausea so far. The doctor said that they would remove the tumor plus 1cm of surrounding tissue as well as the main lymph node. When my mom was diagnosed there were no affected lymph nodes and ultrasound has shown no lymph node involvement since but the doctor said that it is done as a precaution. They will also check other lymph nodes during surgery with a contrast liquid to see if there or others to remove.

If I may ask one more question Kelly: do doctors in the US prescribe any post treatment/surgery protocol to help remission and keep recurrence at bay? Here in Germany they don't say anything about it apart from strongly encouraging to do sports at least 3x a week. I am now reading a book called 'Life over Cancer', that describes the Block Center program. Curious to see if there are any other sources I should be reading regularly to keep informed?

I am very happy to hear that you got your NED stamp. I wish you to receive many more of them in the coming years. And I am happy for your children too. Having a parent fight cancer and seeing them go through such grueling treatment is by far the most difficult experience. For as long as parents are healthy and around we can allow ourselves to be children:).

All the very best to you.
Anna
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Post Options Post Options   Thanks (0) Thanks(0)   Quote annao Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 2017 at 9:38am
Gordon,

Thank you for sharing your wife's treatment stages with me. Helps me ask the right questions.

We got the first infusion of Taxol/Carboplatin today. Five more to go. I asked the doctor whether we would have further chemo after surgery and she said no. Only five weeks of radiation would follow. Still waiting to see another professor whose are of expertise is immunology/oncology. I'll see what he says about post-op chemo.

In your response you mentioned that one of your doctors is in India. Are the two doctors protocols complementary? Asking because as mentioned in my response to Kelly I am looking for sources to educate myself on different research/studies that are going on as well as post treatment care. One of the doctors we have seen told my mom that TNBC tends to return more often than hormone-positive type of BC. No doubt she was discouraged to hear that so I am trying to get as much information as possible on care during remission.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 2017 at 1:07pm
Everyone is different on their chemo reactions.  The majority of folks I've seen here tolerated Carboplatin quite well - my reaction was extreme.  The oncologists leaned toward it being my second go round with high dose chemotherapy playing a roll in my reaction.  My best advice for treating any side effects is to report them.  Stay on top of them.  Be it pain, nausea, constipation, diarrhea, extreme exhaustion, inability to sleep, inability to eat, neuropathy, etc.  I once again did "ice baths" on my hands and feet during the Taxol infusions and once again the neuropathy was minimal.  One treatment the nurse did a poor job of creating the ice packs they used this time, especially on my feet.  Sure enough, after that treatment I had the worst neuropathy I've ever had afterwards.  Neuropathy can be permanent, so it's worth a try. 
My lymph node involvement the first time was minimal - it did not show up on any scans.  My sentinal lymph node just had cancerous cells on it, the node itself was not swollen or changed in any way, so the sentinel node biopsy is _vital_ in my opinion.  My surgeon last time said he felt he got EVERY lymph node on the affected side (they don't do that anymore), but this time they expressed great doubt about that saying it's very hard to find every lymph node.  But scan after scan here and at MD Anderson found no nodes.  At my mastectomy surgery this time I once again did the sentinel node biopsy, this time on both sides. There were no nodes on my left side, so she did a sentinel node biopsy on the healthy right side - the reason being, if cancer were to be found in my post surgical pathology in that breast we'd have no way of going back and knowing where the sentinel node was because my breasts were gone.  It turned out that the injection showed my left (twice cancerous) breast had rerouted it's lymph system to using my right side - both breasts were using my right lymph nodes :) Ain't the body an amazing thing?

Recurrence is more common for TNBC patients in the first two years after treatment than for hormone positive bc patients.  BUT - they're not talking about recurrence in the previously cancerous, fully treated breast.  This is something I sure as hell didn't fully understand until I had this recurrence!  Once I became convinced my cancer was back I started looking online for treatment protocols for my situation.  I could find NOTHING.  I hunted down folks that I thought would know to contact and ask - nothing.  When I was finally diagnosed and had my biopsy confirming that it was back my doctor confirmed that this is exceedingly rare unless the patient is BRCA positive - she's never personally seen it without a genetic predisposition.  It's so rare that there are no studies because there's not enough patients to study.  That means no protocols - no scientific percentages of survival for different treatment options - we just had to make it up.  All of that to say - it is quite true that your recurrence and survival chances are indeed the same with mastectomy vs lumpectomy with clear margins and radiation - I'm a fluke.  Two research institutions are poring over my genome to see if I have some unknown genetic predisposition  (my grandmothers died in 1928 & 1940 of "female issues", I have no female cousins, no blood related aunts and my mother died of hormone positive breast cancer at the age of 81).
Since your mother is doing ALL of the usual chemo's prior to surgery, I'm not surprised they're saying no chemo will be needed post surgery and radiation.  The only reason to do more chemo would be if she had an unusually large residual tumor, or residual lymph node involvement.  Highly unlikely in her case.  I would've done more chemo if I hadn't achieved pCR because I've had this TWICE, and no one know's what that means to my long term survival.  Under normal circumstances long term studies show more chemo post successful treatment is not warranted. 

No, there are no ongoing treatment protocols following chemo/surgery/radiation for TNBC patients.  Most folks have heard of the amazing "breast cancer pill" that most patients take for 5-10 years post treatment that greatly reduces the chance of recurrence.  Those would be the estrogen receptor modulators, aromatase inhibitors and the like, but since our tumors are negative for hormone receptors they are useless to us.  A healthy diet and exercise routine is the best we can do for now. 

You mentioned she'd be doing "only 5 weeks of radiation" post treatment.  Know that 5 weeks is a LOT of radiation, the lifetime maximum radiation you can have on that part of your body.  I was lucky, my skin never got worse that a sunburn and healed beautifully.  The radiated skin just had a bit of a perma-tan. BUT - when they went in for my mastectomy they found a lot of radiation damage, especially to my pectoral muscle.  I've had serious healing problems post surgery because of it - 2 revision surgeries, 2 months on a wound vac, a total of 8 1/2 months of wound care. All that to say - it's not "only" 5 weeks of radiation, 5 weeks of radiation is a powerful cancer fighting tool.  To us it just _feels_ like so much less, since our chemo regimens are so dreadful. Radiation can feel like a walk in the park after A, C, T & Carb! (my interior radiation damage would've remained a mystery to me, and not been an issue at all if I'd not had this recurrence and surgery - FYI).

It sounds to me like your mom is getting great care.  Whenever she can she should eat foods high in iron for the anemia, and keep up her protein intake.  Especially in the weeks prior to her upcoming surgery - upping her protein intake will help in healing.  Don't be surprised if her platelets start dwindling, it's a common Carboplatin side effect.  My last treatment I was barely over the platelet count that would've delayed treatment.  And so anemic!  I pictured the blood in my veins as this thin, watery pink stuff with lonely platelets wandering around alone, "HELLO??? Where did everybody go?" LOL.  Both things bounced back enough that I could have surgery 4 weeks after chemo ended. 
If your mom starts having complications with her Carb & Taxol chemo do not hesitate to contact me, I'd be happy to chat,  kellyless13 at gmail dot com (no spaces, at=@ dot = . )
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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 annao Quote  Post ReplyReply Direct Link To This Post Posted: Sep 03 2017 at 6:07pm
Kelly,

Thank you for this wealth of information! Apologies for the delay in getting back to you: I have been down with a cold past week and trying desperately not to give it to mom. Thank you for sharing your email address with me. I will get in touch if we have any complications with the new cocktail. first week was ok, ashiness was the main side effect that mom experienced.

Neuropathy is a real problem, yes. She is given the ice packs but it does not help much. The doctors also prescribed Neuro Strada (vitamin B complex). Mom was also prescribed Helixor (Mistel Therapy) shots three times a week. It is supposed to help with the chemo side effects and also boost her immune system. She will be getting the shots for the next two years.

Noted re: radiation. I guess the positive effect of it overweighs the damage it causes.

I have also read a lot about reishi mushrooms as a good immune booster and cancer cell fighter. It is featured on Sloan Kettering website as well. I am still reading about it and need to consult doctors, if I find enough support for it I will get them from Japan for mom. In this battle anything helps.

We have five more weeks to go. MRI and mammogram to follow. Fingers crossed.

In good health,

Anna
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