Figuring out the path forward

AnacortesGirl

Saw the trial onc yesterday for a consult.  Will see reg onc on Monday and that's when the real decisions will get made.

She is concerned and wants me to do some more chemo during rads.  She says my chances of reoccurring are 50% or maybe higher over the next 5 years.  Those are "real time" odds and not based on old history that we know is circulating out there.

So her first recommendation is xeloda with rads.  She didn't talk dosage.  I know a few of you had this.  Does it cause hair loss?  I would hate to loose these lovely locks that are about half an inch long. 

She mentioned that the platinum chemos (carboplatin, cisplatin) are also options.  From a cancer killing perspective she feels they would be more effective.  But she says the SEs are much more severe.  Worse than the AC and T chemos.

Still on track with a normal rad schedule so I expect 6 weeks.

After rads she'd like to see me on AIs for 10 years.  We didn't talk specific types.  She did say that AIs can lead to cell death of the cancer cells but they just aren't as effective as good ol' chemo.

I asked about PARP Inhibitors and she said she'd love to get me on those since they look so promising with the BRCA mutations.  But unfortunately they are only available in trials and the trials are Phase I/II accepting advanced cancer patients.  No stage III.

Also would like to see me get Zometa every 6 months.  She said the results of 30-35% reduction in re-occurrence is in the early stage gals but she figures even if the odds are reduced it will still help.  She said the SWOG (S0307) trial is still 3 years away from reporting any results (this comes from Dr. Gralow who is a co-worker).

So no surprises and no silver bullets.   

Any advice before Monday's appt?

KerryMac

Well, I would be happy that she is recommending more Chemo. It sucks, I know, but maybe going through a bit more now (and I know, hair loss again, eek) will give you an advantage in the long run. I have no experience of any of the drugs you mentioned, but I am sure they will come up with a good plan for you. The important thing is there are still options.

As  daunting as a 50% statistic is, remember, it still gives you a 50% chance of no reoccurance. And, there are several women that post here, who had many positive nodes as well, who are still doing well. There is still hope!

I would also ask your Onc what you can do to increase your odds of falling on the 'right' side of that line. Things like Zometa. Also exercise, keeping a lower body weight, etc, all help, and will give you more of a feeling of control.

I know that none of this is fun, and you still have a long road ahead of you. But stay strong, and get yourself in fighting mode again. We are all behind you. 

helena67

Platins are supposed to be good with BRCA mutations although I am not sure if that would be only BRCA1. In any case it is a powerful class of chemo drugs. I am sorry you would loose your hair again with the chemo. But you know, it's for a good cause...Have a good long talk with your regular Onc too. You can maybe also check the clinicaltrials.gov website (or ask your Onc) and see if there are suitable trials.

I was also thinking of Avastin. Would that be an option?

Best, Helena.

Anonymous

Christy,  I'm  glad your team is coming up with a plan for you and you will be starting on the path of hope again.

Barb

bejuce

Hi Christy,

I took Xeloda during rads and didn't have any side effects.  My hair was growing at that time already so no concerns there, you'll do just fine.  Not sure about the platinum chemos though.

As for AIs, my oncologist also plans to have me on hormonal therapy for 10 years.  I'm currently on Tamoxifen as I'm pre-menopausal, but will switch to an AI at some point.

Keep plowing through and have faith that it'll all work out.  Also think about it this way - those of us with huge tumors but without mets have to believe that our tumors were growing happy where they were and had no intention of leaving their nest.  Our lymph nodes were doing the job and chemo/surgery took all the cells out.  

Good luck!!! 

helena67

Hi bejuce,

I noticed you had asked about those with ER+/PR-/HER2+ who are 5 years out. Just wanted to say hi and say I am only 6 months ahead of you! Also aiming for the 5 year line, then on to 10!

Best to you

Helena.

diana50

Christy

i just want to add my support to you; it really sounds like you have a super wonderful onc team working with you and offering plans.  trust that the docs know what they are doing....and whatever you decide...it will be the right plan for you. hang in there...."fists up"

diana

littletower

OK-dumb question here...what is ALS?

SpunkyGirl

AIs+aromatase inhibitors

YATCOMW

christy....

I worked with an oncologist in Dallas TX----- he used to be the head of the breast center at MD Anderson but left with several of the head of depts to start a major practice in northern TX.  He came highly recommended by Nancy Brinker from Susan G. Komen.

He was brilliant......and way ahead of his time.  He believed in cisplatin.  He was doing it 20 years ago.....it is just now getting into mainstream.  I did TAC X 6 and then FUMEP which was cisplatin and a couple of other drugs.  It really wasnt bad..... I had trouble with high blood pressure which gave me terrible headaches but other than that it really wasn't bad.

My feeling from the beginning is that you have one chance to get this right......you don't want it to come back.  I was for throwing the kitchen sink at it ONCE.....so I would never have to do this again. (with God's blessing).  

Just wanted to let you know it really wasn't bad.

Jacqueline 

AnacortesGirl

Jacqueline -

Thanks for letting me know about your experience with cisplatin.  It really scares the heck out me right now because I'm really am beatten done from the chemo and the surgery.  But I also think about the one chance to get it right.

How long was the FUMEP regimen for you?

All -

Thanks for the comments and info.  I'm off to my appointment to see what onc 2 has to say.

Claire_in_Seattle

Dear Christy,

Good luck with second opinion as that was what I was going to recommend.  So sorry you will most likely need more kick-butt treatment, but as KerryMac says, it will significantly boost the odds in your favor.

Then once you are on AIs (which BTW I am doing just fine with) the other boring stuff........

1. Exercise
2. Keep weight down to BMI of 25 or less (still working on this one)
3. Aspirin therapy (Michelle Holmes study)

These are interconnected.  Exercise helps you keep your weight down, and those of us who exercise usually have something hurting so no problem remembering to take an aspirin at night!

On top of this, exercise makes you feel just fab otherwise.

But so sorry you have such a long slog ahead of you, and so glad you are exploring all your options.  In your shoes, I would not hesitate to get a third opinion, and remember that Seattle is one of the lead-edge places in the country for diagnosis and treatment.

Good luck with everything. - Claire

AnacortesGirl

Got back from the visit and he has a different twist on things.  His first priority is to "make sure there is nothing else going on".  (How many times do we get to hear that phrase??)  Since I had some findings on my last PET at the beginning of April he wants to send me in for another PET/CT (the others were just PETs). 

If I'm clear, then he is leaning toward the idea we aren't seeing anything else so let's move forward without any more chemo and do the rads, AI and Zometa.  His reasoning is that we don't know if there are any cancer cells elsewhere and, if there are, we still don't know the right chemo that will affect/kill them.

The AC/T was very limited in it's response (probably just the taxol worked).  So he's not sure that putting me through the additional stress is going to buy us anything.  And I did go down a long road with the original chemo.  It was 26 weeks and I had a lot of SEs.  The idea of facing more SEs with me already beaten down is rather daunting.  And without a tumor to measure the effectiveness of the chemo we'd be shooting in the dark on the type or length of treatment.  It could be all for naught again.

But on the other hand.  If I knew there was a chemo that I could take now and not ever face this cancer again then I'd do it.  I don't want to regret things in the future.  But what if I choose the wrong chemo type??  Or we don't have a long enough treatment plan? 

I don't think a third opinion is going to gain anything on this dilemma.  Because this is going outside "standard of care" there is no good data or studies that we can refer to.  And there are so darn many different genes that make up the whole cancer environment.  It would be great if we could have something like the OncoType test which would spit out the most effective chemo for our cancer's and body's biology. 

So it's more waiting until I get the last drain out and get the next PET/CT scan.  I have more time to think about it and to get stronger.

Helena - I already had Sutent as part of my neoadjuvant chemo.  Sutent is very similar to Avastin.  One of my questions to the trial onc was if they measured my VEGF expression (which would indicate how well I would respond to Sutent or Avastin) and she said they did but that the data was still in the accrual stage so she didn't know if it how much expression I had.  You would have thought they would want to know that up front.  I sure would of if I knew about it back then.

Claire - I gotta laugh at how the aspirin is interconnected!  It used to be standard fare for me when I was doing more gardening.  Nothing like 4-6 hours in the yard then a couple of aspirin before bed!  Good news is that I don't have a problem on the BMI -- it's 21.  They gave me a good "weight gene" and then they gave me a lousy BRCA gene to make it even!

Claire_in_Seattle

Hi Christy.....

Sorry that the AC didn't help more.  I remember well how much you suffered with chemo.  So delighted you will most likely not be going down that road again.

I am glad they are waiting until you are a bit more recovered from surgery and feeling stronger overall.   I haven't had Zometa, but the rest is do-able.  And a piece of cake after AC!!!

So glad you have a plan in place....or at least know your options.

I am also sorry we can't do gene testing and do customized treatments.  I think this will be coming w/i the next 5 years.  It is already available with some other types of cancer.

You must be feeling tons better.  So glad you went for this.... - Claire

KerryMac

Chrisry - well, I think your Onc does have a good point. If you are showing up NED on your scans, what are they trying to kill with more random chemo? And the AI/Zometa combo is still pretty powerful. Still, lots to think about.

Anyhow, you should just concentrate now on your recovery and in getting stronger. No rush with decisions.

Take care. 

Kristian

Hey Christy,

Not sure if you already have your treatment plan in place.  I had a recurrence of breast cancer in my chest wall after a bilateral mastectomy. My first round of chemo last year was FECT (6 cycles).  I did not do too badly with the side effects, mostly mouth issues.  This time around, my oncologist has me on cisplatin and gemcitabine.  My cancer is triple negative, and the chemo I had before obviously was not effective at kiiling these cells that were waiting to grow.  My side effects have not been too bad so far.  I have a miracle pill for the nausea (it is called Emend) and the worst side effect is fatigue, which really is not too bad because I don't have much trouble sleeping at night.  I am taking neupogen shots to keep my blood cell count up and not risk infection.  I have also had a rash and ringing in my ears.  I am also on a very high dose, so, so far so good.  Had my second cycle yesterday.  I am only doing 4 cycles, then hopefully the tumour will shrink enough to have surgery, then radiation.

Good luck with you and your treatments.  I know everyone reacts differently to the zillions of treatments out there, sounds like you had a tough and long round last time.  Sending you positive energy!!

Take Care.

Kristi

AnacortesGirl

Kristi -

I am so sorry that you had a recurrence.  But you sound like a positive person and the chemo you're on can be very effective!

I think I've made up my mind.  I'm going with my regular onc's plan.  I'm scheduled for a PET/CT next Friday and we'll make sure I don't have anything in the chest wall and lung.  Unfortunately, because of Memorial Day, I won't get the results until the following Wednesday's appointment.  So it's a long time to wait.  But I'm going to assume that all is clear.

Once we see a clear scan then I'm just going to move to rads and not do any more chemo.  I just need to get my life back and not be chasing invisible cancer cells.  I'm already nervous about the thought of returning to work.  If I added chemo to my radiation then I am sure I would have to go on long term disability (my short term is up in July) and I'm afraid I would never get back to work and a semi-normal life.

I used to be a healthy, high energy person and passionate about my job.  But my confidence got hit pretty hard through all this.  I think getting my energy, passion and confidence back will make a difference in how I live the rest of my life.

On the other hand, if we find something, then we'll pick the chemo cocktail and this time we're going to watch it very, very closely to make sure it's responding.

YoYo44

Hi Christy,

 I have not been in for a while-rads is going well (17 of 31 done) but sucks up all my time-still at work.

A lot has happened since I was last on and I just want to send you some positive energy and hugs.  I cannot comment on the added treatments, especially with ILC it seems to be a crap shoot.  For me the Taxol did some but had the surgery before the FEC so not sure what it did so I understand your dilemma.

I think one of the most important things to do to beat this is to remember to smell the roses.  A year ago I never imagined I would spend so much time worrying about so many things and just trying to rein in my mind and fears.  Good luck with the docs and your decisions!

Hugs,

Yo

AnacortesGirl

Thank you for all the responses.  Spent a lot of time thinking about this and the input from all you ladies really helped.

Had the visit with my onc on Wed to go over my scan results and make the decision on chemo.  Scan looked good except the PET side showed a completely different area of uptake (in the cecum which is in the large intestine) but the CT side didn't show a mass.  So it seems every PET I have shows different areas of uptakes and none of them have been consistent.  Since no mass was shown we are probably moving on.  Unless he decides I need a colonoscopy.  Oh joy.

So overall the scan was good news. Yes!!!

Then the chemo discussion.  I got to say that I've been feeling stronger now that it's 6 weeks out from my bilat.  I've been contemplating the favorable vs the unfavorable prognosis indicators and the scale keeps weighing heavier on the unfavorable side.  Turns out the onc had been thinking and researching also.  He likes the promise that they have seen using the platinum chemo against BRCA cancers.  And after I gave him my list of unfavorable indicators he felt the BRCA was the one we needed to focus on.  So I'm just thinking I gotta say the words "more chemo" and then he speaks up and says "if you were my sister then I would want you to do more chemo".  So that clinched it and I said let's go for it.

At next week's visit I find out if insurance will pay for it.  He's going to do further research on the regimen that has been used for carboplatin in adjuvant situations.  If insurance pays then I start weekly caroplatin while doing rads.  Six weeks of rads and who knows how many of chemo.

Still waiting to hear when they'll have the physics and QA done on my rad simulation.  Should be any day now.  So rads will probably start next week.

In the meantime I'm going to go back in to work next week and give it a whirl.  With any luck (or bullheadedness) I'll be able to get 4 weeks of consecutive days of work so I can re-instate my full 6 months of short term disability.  I only have about a month left.  I'm sure I'm going to need some more time off if I'm doing both chemo and rads once I get a month or so in to it. 

Gave my mom the news yesterday.  She took it OK but she was disappointed to her that I wasn't going to be done.  I hadn't told her about the path report -- I was waiting until this decision had been made.  Once she started thinking about it then she was glad that the onc is looking for a permanent solution rather than waiting for mets to take further action.

DH is all for it.  He was even trying to ask about the cost of the chemo.  So that told me he was considering paying for it if it's rejected by insurance.  I love that guy!

KerryMac

You know, I am all for throwing as much as you can at the Beast. I think, in your heart, you will feel that you "have done everything" if you do more Chemo. It sucks, but then does so much else about this disease.

I think you are making the right decision, I hope your insurance thinks so too.

Keep us posted.

Frankie_

Hi Christy,

I just stumbled upon this thread. Sounds like your Onc has taken the time and done his research-he's treating you aggressively! I agree with Kerry-you are doing EVERYTHING possible, and just knowing that will get you trough your treatments! Like you, I have had some scans that have been inconsistent in regards to the results...it's been very frightening and frustrating! I too continue with future scans because of these inconsistencies. Hopefully the insurance works out! Can you claim the chemo on your income tax should it not be covered? Will the drug company subsidy some of the cost?

Gitane

Christy,   Sounds like getting a platinum chemo makes sense.   Be very good to yourself, and give your body all the care it needs.  Hugs,  G.

Flamin_nora

was just reading the thread---don't have any specific advice for you, but wanted to give you a big hug

 Now go out there fighting!!!b

Claire_in_Seattle

Hi Christy,

I think this is all good news.  I would do the chemo as well in your situation.

I am glad you are going back to work for a month.  It will help you mentally on top of the additional disability time.  One important thing is making sure you stay current, and this time at work will keep you connected.

You realize that your going back to work will mean that the sun will finally come out!  I will never know if I had "radiation fatigue" as it's been weather where sleeping was the best course of action.  I took a short nap yesterday, then paid my rent later.  Person who took my check could hardly keep her eyes open.

One way around the insurance is to see if you can get in the right trial.  Or sometimes you can appeal directly to the provider of the med.  Most have these sorts of programs.  I think your oncologist can help here if you bring it up.

Again, this is good news.  No, not a fun time, but good news.  Good luck with everything. - Claire