January 2012 chemo

Great news Annie!

Recuperating from #4 A/C - had my ECHO heart test today.  Hope and pray it comes out okay!

I asked my Oncologist about Neulasta and Taxol - he said no, you are done with it!  Hang in there everyone!!!!

 I tried getting an extra week out of my Oncologist before starting Taxol as well.  He said "no negotiations, but I can't fault you for trying."    DARN...

 Do you think we will ever feel "NORMAL" again???   Today I had a small glimpse of it. 

So.  I just learned today that my chemo drugs are considered "pharmacy" benefits under my insurance plan - and we are required to pay 20% of the treatment.  The first treatment will cost in excess of a thousand dollars - and I have 12 total treatments.  I can't afford this, honestly - there is no way to pay for it.  I'm trying not to freak out (I called the MO's office but they're closed for the day, of course - they never warned me about this) but I can't help it.  Has anyone else run into this kind of issue with their insurance company?

Nancy,

Did you look through your health insurance benefits? Many policies have an out-of pocket/copay maximum of a few thousand ($5000 often) per year. Once you reach that, everything after that will be covered at 100%. I reached my limit last year and my insurance ended up covering my OncoDX test at 100%, even though they had only covered 80% of my treatments prior.



Keeping my fingers crossed that you will end up having a low out-of-pocket maximum and won't need to worry about payment issues on top of everything else!!!

Congrats, Annie!!!

Everyone: I was wondering if anyone else has wobbly legs? This started for me 3 days ago (9 days after 3rd AC) and I have had 3 instances where it happend. There was pain in my lower legs each time, and then my legs went numb. I did not fall, but I was close to it....

Shera,



Janetanned and NancyHB did a great job explaining what I feel also.

My bc journey was similar to Nancy's. The sentinal nodes they removed showed no cancer involvement, my tumor was stage 1, and I had clear margins. However, my OncoDX test result changed my treatment from "only" radiation, to chemo AND rads.



Although my last chemo "treatment" has been horrible, the two treatments before were not too bad. But even after all the side effects I have to say that I am glad that I am doing this aggressive treatment after all - because I feel that I am throwing everything and the kitchen sink at this crappy disease. I feel that the more aggressive the treatment, the better the benefit will be - and the distant recurrance is lowered, and psychologically it lets me feel like I have done what could have been done. Thinking it will be "worth" all the SE in the end is helping me through the dark moments....



Best wishes, and good luck coming to a decision that will work for YOU!!!

Sleepless in Seattle and WOBBLY KNEES - I had this, too.  With #3 AC and #4 AC only.

Knees weren't so much numb as just weak and felt like they would give out at any moment.

One time going down the steps, they almost did.  But I did get numbness in feet with #4 AC.

It's all very STRANGE, isn't it? 

Thank you guys so much for all the input.  Needless to say I completely freaked out and fell apart.  I've been unemployed for two years and honestly, we live day to day in our home - which is fine, until something like this happens.  We have an out-of-pocket maximum of $3500 a year - ran that up within 24 hours with surgeries and the like.  I cleaned out what was left of my 401k to cover all of that and the damned copays every time I walk through the door.  I called the insurance company; we have a "five-tier prescription system" and chemo drugs fall under that fifth tier, so we have to pay 20%.  But she was kind (?) enough to point out that we have a maximum out-of-pocket of $4,800 a year.  I guess that helps. 

It's hard not to say "f*ck it" some days anyway, and then this.  However, my wonderful husband refuses to let me dwell on it tonight, and once I talk with the MO's office tomorrow, I'm hoping we'll work something out.  Worse case scenario - we set up payment plans and I get one HELL of a tax write-off next year.  :-)

Thanks for listening - love you all so very, very much.

Nancy - sorry to hear about your insurance woes. I can't imagine what developed country has a more complex and unsatisfying insurance system than ours. 

Sleepless in Seattle - thanks for the heads up about wobbly legs. Yet another 'after 3rd treatment' SE to watch out for. I think the cumulative effect factor is really coming into play.

I'm seriously steroid buzzed. Hope I sleep a wink tonight!

Annie 

Has anyone else tried for a copay relief grant?  My onc office was kind enough to point me in the direction of a number of foundations which help women with bc cover these ridiculous fees.  I applied to three foundations and got a grant from one, which covered my out-of-pocket expenses for 2012 (in other words, all the copays and coinsurances from 2 chemos and 2 neulastas in January  and now my insurance will cover 100% in-network for the rest of the year). Check with your onc office, ladies; there is help out there, especially if you are in financial need because you are not working!

shera:  I'm surprised no one has talked with you about the Oncotype test, or at least offered it as an option.  I understand that the test will certainly help determine the efficacy of chemo, but it also gives a chance of distant (or metastatic) recurrence.  I have yet to meet anyone on these boards who hasn't at least been offered the opportunity to have the test done.  My BS sent the tumor off to Genomic Health after the lumpectomy; I met with the MO a few days later and we mapped out the original chemo plan (4x TC).  He said, "This is what we'll do, unless the Oncotype comes back with something really different."  Like I said before I had "good" BC so this was standard protocol.  I remember vividly the phone call I got from the MO's office when the Oncotype test came back - seven days after they sent it out, and two days before Christmas.  The doctor said, "This is the highest score I've ever seen."  (She was excited about the result because it allowed me to participate in a clinical trial, but that's another story...)

But that test changed everything for me.  Had it not been done, I would have continued to assume I had a 5% recurrence (not metastatic) rate with my four rounds of TC and five years of Tamoxifen.  We also would have continued to assume my tumor was PR+, and that my ER status was very positive (and yes, I'll do the Tamoxifen because technically I am ER+, even if just barely - I'll do whatever I can to lower my recurrence rate).  

The test takes about two weeks to complete, and if your insurance company will pay for it (it's about a $4,500 test) I urge you to consider it.  It's one more piece of information in our decision-making process.  While I know we all want to start treatment as soon as possible, my MO pointed out that two weeks isn't going to make a difference - the cancer won't suddenly be "back" and growing in that time period.

Of course, this is just my experience.  Many women have the test and get very low scores, and it doesn't change their treatment plan.  I only know what it did for me - and I am grateful every day that my doctors trusted enough in the results to send off for the test.  For me, it likely changed my future.

Good luck, shera - I know this is a scary time when we're trying to make the absolute rightest and bestest treatment decisions so we can live long, healthy lives without recurrence.  I continue to say, information is power in that decision-making process.  Get as much info as you can.

I called the MOs office this morning; apparently they haven't seen the info from the insurance company because we get EOBs long before they get payment (not surprised!)  She assured me that the chemo drugs are considered medical, not pharmacy, and they'll take care of it.  In the meantime, my husband is geared up for his own fight, and has a list of people to start calling first thing this morning (he's like my cancer pitbull). 

Thanks again for your suggestions, and your support.  I keep thinking how lucky I am to even *have* insurance - so many women don't have half of what I have and are struggling even more.  Sometimes, it's all about perspective.  xoxo

Thanks Jenn, Hugs back to you. One more to go.

Sorry Nancy for the money insurance part. I am hoping all will work out.

Hugs to everyonr

bela 

I just came back from my weekly bloodwork and the billing person came looking for me to let me know that the maker of Herceptin is now offering a copay assistance program.  For those of you taking it or who will take it, check with your onc.

1 day post FEC#3 and I definitely feeling poisoned again.



Even without the cyclophosphamide this time (due to elevated LFTs) I have now got palmar plantar erythema (PPE - hand foot syndrome). I have a "hot spot" on my left heel and can't put weight on it. No treatment for this except frequent washing, using cream and ice-packs and wait.



Quite ironic since this is the most frequent side-effect that patients on one of my work trials get...(I'm a cancer clinical trial coordinator). My work trial is an adjuvant therapy trial and this side effect is the one that most frequently causes our patients to quit the treatment because it is so debilitating :-( Hopefully since this was my last FEC it will clear up quickly!



Jenn