New Diagnosis+TN+Heart Failure

Susan8

Hi everyone!  I'm 56 and recently diagnosed with BC.  Offered lumpectomy but went for mastectomy - thought they should take the lot.  Can choose at a later date to take the other breast if I want.  Don't quite understand the import of being a TN and would love to read any and all responses.  I have read some of the 260+ pages and am overwhelmed by how many of us there are, all over the world.

Was invited to participate in a trial, looking at the occurrence of heart problems years after BC.  Tests (MRI +echocardiogram) done last week were discussed with me today by my oncologist, who immediately referred me to a cardiac specialist.  I was meant to start chemo today FEC (Fluorouracil/Epirubicin/Cyclophosphamide) for 3 cycles, followed by D (Docetaxel-aka Taxotere)for 3 cycles but that has now changed.  I had intended to talk to the onc. about a further 3 weeks of FEC instead of the D because of its potential for permanent nerve damage in my hands and feet.  (This was one of the options originally discussed with me.)

Oncologist now pushing me to do TC (Taxotere+Cyclophosphamide) but I am extremely reluctant, given the real possibility of nerve damage.  Was then offered CMF (Cyclophosphamide/Methotrexate/Fluorouracil) which apparently is considered an older and less-effective regime than TC.

Enter the heart problems - have today been given three new drugs for heart failure, one of which shouldn't be taken with Methotrexate.  I will be getting back to my cardiac guy about that, but right now my head is reeling.  Apparently the heart failure (left bundle branch block), in light of my family history and personal physical situation (non-smoker, non-drinker, not diabetic but overweight, low likelihood of arterial blockage, dada dada (brain overload right now) is likely to be genetic.

I bring all this up because, from a very light scan so far of this thread, there seems to be one path of trying to minimise or avoid the chemo drugs, and another path of embracing them, riding out the good and bad side effects, and hopefully coming out the other end ready to live life to the full.  Rhetorical question (because I know it's my decision), but is it so wrong to insist on the older regime of CMF rather than the very new TC that the 'expert' says is preferable?  There is heaps out there in threads on CMF, dating back 20 years of use, and all I have been able to read so far on the Taxotere is scary scary scary, thus supporting my wish to avoid it. 

And then I see this triple-negative thread.  What does it mean?  Am I more likely to get a recurrence of BC because I am TN?  So many thoughts, so many questions... please forgive the length of this post.  I would love to hear what you are thinking.

Morgan513

Welcome and I'm sorry you have to be on this journey.

I had four rounds of TC three years ago and I can assure you that it was very doable.  I had very mild side-effects.  From what I recall, TC is more effective than AC or the older chemotherapies.  I do think you have to put some trust in your doctors.  I don't think they would steer you wrong.  Also, if I were you, I would get a second opinion.  Another set of eyes can be very enlightening.

Good luck!

Lorrie 

Susan8

Thank you Morgan513 - it's good to hear positive stuff about TC.  I am told that 5% of people get permanent damage and in other threads I see that lots of people suffer the neuropathy in the short term but that it disappears over time.  Contemplating the possibility that I would be one of those is certainly something I need to do seriously.  Again, thank you.

Luah

Susan8: Sorry you have to be here. Neuropathy is a risk with taxotere... but remember you may be hearing about it disprortionately on these boards because women come here looking for help and advice. Others who got through the regimen without problems may not be visiting here so much. (My sister had a lot of body aches, but was fine afterwards, for example.) 

Taxotere is a taxane and this class of drug has been shown to be particularly effective for TNs. Some of us do taxol, and find 12 weekly doses pretty easy to tolerate. You may want to discuss various options with your onc.

A (in AC) and E (in  FEC) has also been shown to be effective for most women, and is considered aggressive treatment - often used with high-grade, larger and node-involved tumours. However, it can be hard on your heart which is probably why your docs are considering TC as an alternative.

It is so confusing when you are first starting out. Ask lots of questions... including what would your onc do if you begin suffering extreme neuropathy? With TN, you do want to hit it as hard as you can without putting yourself at undue risk. This is because we don't have the benefit of other systemic treatments like hormone therapy. So one kick at the can....

Sugar77

Hi Susan8 - just wanted to pop in to let you know I did TC and had no neuropathy problems at all. My side effects were very mild and tolerable but everyone is different. Good luck!

Susan8

Dear Luah and Sugar77

Thank you both so much for your input.  It's good to hear from others who have done well with Taxotere.  I think my biggest fear is losing my ability to do textile art.  It means a great deal to me and I have watched two others in my family who have lost feeling in their finger tips - unable to pick up their knife and fork, things slipping out of their hands, having to watch where they put their feet.  It's distressing for them, and for me.  To lose my ability to do my craft is worrying.  But, for most people it goes away.  Well, I will look for a second opinion, and I will have more talks with my onc.  I also get the point that there are many others who have been through this and they have not chosen to share their stories online.

Lynn18

Susan:  Sorry you are going through so much right now.  You may want to check out the Triple Negative Breast Cancer Foundation website--there is a lot of helpful information there.  Yes, Triple Negative is more likely to recur than other types of breast cancer--it's more aggressive.  But the upside is that we benefit more from chemotherapy than those with less aggressive breast cancer.

I did taxol instead of taxotere, and have not had much neuropathy.  Good luck to you, I hope you get all the help you need to make your decision.

jezza

Hi Susan...There is also an Aussie forum with lots of triple negs posting. You might like to chat there with people in your area.I will PM you the address. Not sure if others on the site have been asked to participate in that trial.

jezza

 

KayP

What I have learned about my journey because of breast cancer - triple negative, etc.  I did 4 rounds of Taxotere and Cytoxan.  I will admit that I was scared - very scared.  Neuropathy was a small problem for me - hands and feet.  However, that was 3+ years ago.  The only recognizable residual is that I have a hard time shuffling cards.  After my second treatment I went to the hospital for 7 days dues to my white count plunging.,  After the 3rd, my red count lowered.  There are shots for these problems - not easy.  Now that I am past all the treatment, I can honestly say that it was very, very hard - but it was doable - and with a positive attitude and grit - it can be done.  My first oncologist told me that I would not make it past two chemo treatments - basically that I would not live.  Here I am -- ALIVE!!!  And, I now have an absolutely fabulous oncologist. 

 From what I have read, TN's who make it past the 3 year mark without recurrence have a greater decline regarding the cancer coming back than those without TN.  And, I celebrate that I have made this marker. 

 I just saw a genetic counselor yesterday and was told that I have a high probability of having BRCA 1 or BRCA 2 - that triple negatives have a higher risk of having this mutation.  I will be having the test done as soon as my insurance okays it.  If they do not okay it, the genetist will order that I am a high risk and that I need an MRI every year and a mam every year - those 6 months apart (alternating).  The cost for the test is $3,000 and is only done in Utah. 

Honestly, overall since chemo and rads, I have not felt like I have fully gained my strength back - the me I once was,  But, with that said, my mother died 11/09, my dad died 5/10, my dtr's husband left her a few days before my dad died, and 3/11, my father in law died.  So, I know that these things have a bearing on how I feel as well.  But, somehow, I just don't think that I will ever be me again -- cancer is always on my mind even when I don't think it is -- and I am older now   ... bummer!   

 Any other TN survivors 3+ years?

 Blessings,

K

Mouse6

Hey Susan. I too, did 4 rounds of taxotere finishing in April last year. I have to tell you that I had very bad nerve pain and neuropathy starting about the third day after my treatments, that lasted about 3-4 days acutely, and then just mild tingles, numbness and pins and needles for the remaining days in the cycle. I thought based on my side effects that I was going to have permanent damage for sure, but I am happy to say I do not have a trace of permanent damage. So, be aware that you may experience some pain so you can be prepared with a script for pain relief if you need it. Nobody warned me that it could be so severe and my first treatment was on a thursday. By Sunday I had to go to the hospital to get pain relief. After I was equipped with percocet, I managed the next few times just fine. So don't let that happen to you. You don't have to fill the prescription, but it's good to have it just in case. I don't tell you this to scare you but just want you to get the best care. All the best!

Susan8

Thank you for all your informative and helpful posts - they have certainly given me food for thought, plus a better grasp of what may happen to me if I take Taxotere.  I'm struck by the difference between the realities you have all experienced and the original statement by the BC surgeon/consultant who said "Chemotherapy is just an insurance policy really.  We took away all the cancer during the mastectomy operation but just in case there might be the odd renegade cancer cell in your bone marrow, or somewhere else in your body, we do recommend chemotherapy."  He made it sound almost unnecessary.  The TN aspect was completely downplayed.  I shall follow this up with the onc.

Thank you also Jezza for the other website.

IllinoisNative

Susan, I'm not triple negative but my BS said the same thing...chemo is an insurance policy.  My tumor actually died.  They removed it, I had clear margins, and it wasn't in my lymph nodes.  However, my cancer, like yours, is invasive.  It has the potential to spread...ie, the odd renegade cell.  I also have a high grade like you...which is good because chemo is more effective against fast growing cells.  My doctor also said that my body knows how to mutate now so I'm more at risk for other cancers.  Of course, I'm BRCA 2 positive so didn't it know how to mutate all along?  LOL!

Good luck!

TifJ

Susan8- I too had TC x 4 and no nueropathy issues. I had one toenail that part of it turned black, but it never hurt and didn't fall off. Six months later it has completely grown out. My heart rate was elevated during chemo, but my onc wasn't convinced it was due to the TC, but to my extreme anxiety. I started taking Ativan at night (still do) to help me get to sleep. My onc also does not see being TN worse than being ER+- just different. I did not have a Nuelasta shot after my first TC and developed nuetropenic fever and had to have IV antibiotics (through my port) for 5 days. I got the shot after each following treatment!

Best wishes!!

yellowdoglady

Susan8,

I am TN and was offered only the Taxotare and Cytoxin because the other stuff would be too hard on my heart.  It was an inherited thing that just took that option out of the package because that particular chemical loves to eat weak heart valves.  I did SIX rounds of Taxotare and Cytoxin and had no side effects except the usual of feeling like crap toward the end.  I worked throughout, so it was not enough to send me to bed for weeks or months.

I took all I could to get well and did exceptionally well on the things offered to me, and am well now years later without any side effects.  Good luck to you.

   

Meggy

I don't really know enough about the chemos you are discussing but I did do Taxol by itsself (very doable...easiest drug I did) and then taxotere with carboplatin.  Taxotere seemed a little tougher but maybe it was the carbo...not really sure.  Time passed quickly though and then it was done.  I really don't have neuropathy...sometimes just the slightest feeling of it...nothing to really complain about. 

I think that you dont get a real feel of how many people get neuropathy on here.....we don't really represent the whole pool of sisters taking the Taxanes....we are just the ones on line. 

I am so sorry to hear about your heart problems.  I wish I had some real advice but I just don't know enough about this.  Sending possitive thoughts your way sister.