WHY would I put myself through this?

Miss Grey,  hello.......

I guess I have to tend to agree with you about the so called way to treat BC.  My neighbor who was diagnosed back about 5 years ago had a relapse.  A growth on her chest wall.  Weekly treatment at Duke University.  For months and months now.  It hasn't grown but hasn't shrunk either.  Really?  Anyway, I haven't had a mammogram for 3 years.  49 years old.  I feel afraid.  Like I am going to be punished for my transgressions.  You know.  I know things don't really work that way but don't they?   Like the Karma Bus coming to visit?  Anyway, what I will say to you is that you are VERY hard on yourself.  I get that concept fully but you take it to a different level.  Please, please know that you are special and cool.  YOU ARE!!  Stop with the self debasing.  You are loved and respected.  Here and elsewhere.

Hi Eve

Sorry! Missed your post of a few days ago saying you are under the care of a cardiac specialist re the Herceptin. Pleased to hear you are seeing someone on Friday. I know you said you'd had heart problems before but I think you also had BC before too.

I'm doing the chemo, immunotherapy (Herceptin) and radiotherapy for preventative purposes too..or could it be that some cells have already escaped. It's a conundrum but I'm going for it!

Wishing you all the best for Friday.

Alice

Hello Eve and friends

Who would've guessed this?

The onc told me today that I have small pulmonary emboli (small clots in the lung) that may or may not have been caused by the chemo.

It is likely that it may have been caused by the previous chemo because I only started the Taxotere after my briefing from the onc. On a positive note, no reactions whatsoever to the Taxotere infusion when it was going in!!!

However, it could be that I have always had sticky blood (forms clots easily) but never knew about it.

The onc has put me on daily Tinzaparin injections until the end of chemo on August 31, followed by three months of Warfarin tablets. Then he will review and decide whether I can stop taking the tabs.

I am feeling a bit fed up about this development but forwarned is forearmed!!!

It could be that this info will help prevent clots developing and stop a stroke or heart attack happening. On the other hand, it may be that this would not happen anyway.

Swings and roundabouts, I guess!

Best wishes

Alice

Hi Eve

Great to hear from you.

If I haven't got sticky blood, the clots may go away after I have finished the chemo. Will have to wait and see!

I am pleased to be on daily Tinzaparin injections until August 31, when my chemo finishes, and the onc will start me on Warfarin tablets for three months and then review.

Interested to see what happens when I start Herceptin with the Taxotere on July 6 but I am feeling confident.

Will keep you posted! 

Best wishes

Alice

Yorkiemom, I don't think her signature includes her surgical path report where IDC was also discovered, and maybe then they found she was also es+

Thanks! That explains things. 

You don't have to be nuts or suicidal to say no to chemo and/or Herceptin.  You have to weigh all of the side effects and risks of any treatment against the risk that the cancer poses for you. 

For many women who are already at risk for cardiovascular events, the cardiac damage that can be caused by the chemo and Herceptin could shorten their lives.  Many chemo agents carry a risk of causing a second cancer that is nearly as high as the potential for preventing a recurrence of the cancer it is being used to treat. 

Each of us must take all of our comorbidities and pathology results, and risk factors into consideration when making this life changing decision.  There is no "one size fits all" approach. 

I made the right decision for me, which was to skip chemo and herceptin and take Tamoxifen starting months earlier than I would have been able to if I had to delay until after chemo.  Herceptin is not a magic bullet, and is not the right choice for everyone, anymore than Tamoxifen is.  Research, research, research and then listen to what your body is telling you.  Honor yourself, make the decision that is right for you, not one that placates anyone else. 

There is no one size fits all when it comes to treatment. I respect every ones decision to do or not to do chemo, Herceptin or tx. I declined chemo and tamoxifen or and Al's. I chose to do Herceptin because my oncologist said that most of her patients taking Herceptin do not have recurrences. She seems to be saying even doing Herceptin alone the odds are I won't have a recurrence and that's without chemo and the hormone suckers.

soltantio - I don't think you were being insensitive, just stating the facts as I see them. HER2+ve bc is extremely agressive and I don't think everyone always totally understands that. Temporary SE's of chemo/herceptin are a small price to pay and even if we do end up with mets, at least we know we did all we could - much better than looking back and regretting the decision to have forgone potentially life saving treatment.

So, I refuse herceptin, so when I get mets I can have it - not a very logical thought process. I would think trying to prevent mets in the first place would be more sensible.

I just had to add here...Russian roulette also happens when we choose treatment...as with me I now have heart issues due to Herceptin. I'm out of breath just walking up and down the stairs. I tire easy where before Hercetin, I was known as the energizer bunny. This happens for those who take chemo as well. Treatments can damage the body, and chemo can cause other cancers. Because my IV leaked, I asked if the Herceptin would hurt getting on her skin. She said no, but if it was chemo it could burn the skin. I said it's pretty powerful stuff to burn the skin. She said, chemo it's sorta like acid. My daughter was there as well and asked if it could burn the veins. She said not as likely because the blood moves it so it doesn't stay in one place or it would burn holes in the veins. Yikes. I read, and know of people who died due to treatment, not the disease. So, I wouldn't put a guilt trip on someone who chooses not to do treatment. No matter what we choose it's a gamble if it will work or not, or if the side effects will be worse than the disease.

Chachamom, no clincial evidence to support what? Unfortunately there not enough studies done on Herceptin alone. There's no study that I know of where there's a scientic cure for cancer. Some may do well on Herceptin and other will not. We don't know who will do well on treatment and who won't. Sometimes it's a hit and miss, which is why people try different chemo's and etc.

I was told according to the studies that Herceptin alone would be a breeze. I was told that most who do have side effects are because they do chemo. I wasn't taking chemo so I hoped Herceptin wouldn't be a problem. Not even 6 months of infusions, and I tire out just walking down the stairs. Sometimes I feel like I'm going to pass out. My EF dropped 20 pts. and I have constant heart palpitations. I think for all of us no matter what choice we make, it's russian roulette. None of us know for sure what our outcome is going to be or if even after treatment we'll get mets. We don't know...no scientic evidence to ensure us treatment will or won't work.

Now, I'm on a Herceptin break and doctor wants to put me on heart meds. Who knew?

Hi Chachamom,

I did chemo mostly out of ignorance at a time when trastuzumab was not yet approved, but given the choice today instead as an HR+ I would choose trastuzumab and ovarian ablation and possibly hormonal therapy. I don't subscribe to the belief that cell kill by chemo is as important for HR+'s as it is to shut down the hormonal influences.

What I think is missing with doing trastuzumab alone that I think is key for HR+'s and that one gets with either ovarian ablation (more complete effect) or chemotherapy (less complete effect) is the reduction of hormonal influence.

The younger one is, the less effective chemotherapy seems to be for achieving adequate hormonal reduction. With bc, what is such a bummer is that there seems to be no way to maintain the full youthfulness one has with stronger hormonal influence and still get protection from recurrence and mets. Women tend to favor not doing ovarian ablation and favor doing chemo instead in part because it doesn't have as devastating of effect on what youth they still have.

I don't know if anyone can have it both ways -- reduction in hormonal levels to prevent recurrence and mets, while keeping some reasonable levels to live a more normal hormonally sufficient life.

I have just joined, and have read this entire forum.  Lady Grey, I am 55 and my diagnosis is her2+++ stage 3 grade 3 with lymph node (at least 2) involvement.  I had an Mammogram (1st ever) and MRI, a needle biopsy on both the lump in my breast and my lymph node.  I also had a bone and CT scan ordered by the surgeon.  I have been told I need a mastectomy followed by chemo and herceptin at least.  I have also been told they probably won't do the herceptin alone.  My pre-op is in 2 weeks, and the surgery is scheduled for Aug 2nd.  I am pretty sure that I am not going to do any of this.  It goes against what I have always believed medically, and I feel like I was swooped up into an emotional tornado therefore making the bad decisions I have already made ie  the bone scan and CT scan.  I have an integrative medicine doctor who wants me to contact CTCA and see about working with them.  She also wants me to have the tumor marker tests for 15-3 and 27-9 I think.  These tests are very expensive and my insurance won't cover it.  She also has a cream substitute for Arimidex for me to buy...also quite expensive, and not covered.   Already, the pathology for my MRI, and the biopsies wasn't covered, and I will be getting a bill for more than 3000 before I even get the surgery or begin the treatment.  I am not sure whether the bone and CT scan are covered because I haven't recieved that info from the ins. co., but of course the lab that did them said they would both be covered as did the surgeon before she ordered them.  I would like to add that the Dr. who did the biopsies also assured me they would be covered before I let her do them.  The biopsies themselves were covered, just not the pathology...if that isn't messed up.  Needless to say, I plan a major fight with all of the above before they get a penny from me.  THIS IS ALL BEFORE ANYTHING REALLY MAJOR HAS BEEN DONE TO ME.  Can you imagine what I am in for in the future.  I have catastrophic insurance, and I think this would be considered a catastrophy, as do both of the DR.s I have seen so far.  My husband's hip replacement was covered, and he wasn't even dying.  Go figure.  Anyway, I digress.  I, at this moment, am planning to skip all the surgery and treatments, and take my chances.  The radiologist says that is suicide to which I replied..."Yes, but what if I get my breasts cut off, kill myself with chemicals, drain every last penny out of my paltry bank account, lose my house....AND THEN DIE ANYWAY like so many do....what is the point.  I would rather live what life I have left, and leave my children and husband with something when I go...not a memory of me vomitting etc etc. I can't talk myself into doing it, so I just go through and read all this stuff everyone posts.  Is there nowhere that you can read about someone who doesn't get the treatment, or we all just like cattle led to slaughter.   Tired from the emotion of posting.  Basically, I would like to know from you, Lady Grey, if you regret your decision.  Thanks.

' 

Nance - you haven't said how large your tumour is. The size, along with the positive nodes is crticial in determining your treatment. Do some reading on HER2+ve bc and you might change your mind.