Oh PooP...Herceptin Holiday Over!

Kim in CA · 08-02-2012, 10:07 PM

First of all, appologies for not being more active on this board as of late. Hubby and I are in the process of selling our home of the last 23 years, and it has been very stressful.

Anyway, just wanted to update you on my Herceptin Holiday. After stopping the Herceptin last year, my markers started to climb again in June of this year. The Her2 Serum was the first to go up, followed by the CA 15-3. My labs drawn last week showed Her2 serum at 26 and CA 15-3 at 49. Since my markers have always been a pretty reliable indicator for me, we decided I should go back on Herceptin ASAP.

I am really frustrated though because the soonest I can get an appointment to get my infusion is in two weeks, and I just remember how fast my cancer spread the last time I had a recurrence to my liver in 2001. I've asked to be notified if there are any cancelations so I can get my infusion sooner, but they've made so many cutbacks in staff at my Oncology center, I'm sure it won't happen.

So, it has been a nice holiday, but I hope I've not opened a can of worms that is going to come back to bite me big time! I know I've been very lucky in my fight with this disease, but if I'd known it would take so long to get back on Herceptin when I need it, I'd have probably never stopped it in the first place.

Sorry for the rant......just makes me so frustrated.

chrisy · 08-02-2012, 10:21 PM

Hi kim,
Sorry other your holiday has to be cut short. I was hoping for a permanent vacay for you. But now you know.

You have been very diligent in monitoring the status of things, you are on top of it and the 2 weeks, if needed, will pass quickly.

Don't forget to breathe

Ellie F · 08-03-2012, 02:15 AM

Good luck Kim,I hope you get a cancellation as waiting is so frustrating. Will your onc now do scans just to check things out or have you already had these?
Hugs
Ellie

StephN · 08-03-2012, 11:19 AM

Dear Kim -
Sorry to see your body LOVES Herceptin THAT much!
Breaking up was hard to do, huh?

Wondered what other tests you have had? What scans to look for any sites of mets?
You did not mention any, and I know before I took any treatment I would want to know what I was dealing with.
For instance you may want to try Tykerb with Herceptin or some other combo depending on what is causing the elevation in markers.

Hope the new home will be near a good place to ride your horse.

tricia keegan · 08-03-2012, 11:55 AM

Kim sorry your vacation was stopped but of course its better than the alternative and the two weeks will pass quickly, hope you're happy in your new home too.

Pray · 08-03-2012, 02:39 PM

Can't you take your infusion from a different cancer site? Though my Dad did not have herceptin he did go to another center for just one infusion of chemo. Just a thought.

Your in my prayers,

Peace,

Nancy

'lizbeth · 08-04-2012, 06:09 AM

Ah Poop. I hate waiting too.

Don't kick yourself. You will likely be just fine with the Herceptin holiday.

In fact, the cancer cells will likely say "Oh crap! It's that H stuff again, we're toast!"

Kim in CA · 08-04-2012, 11:28 AM

I'm feeling a little less frustrated today.

I have my docs cell phone number, and hate to use it, but I phoned him yesterday to tell him that I was not happy about having to wait two weeks to get my Herceptin. He was actually at the hospital seeing patients, and sounded a little annoyed by my call. When I told him the scheduling dept. had me coming in on the 15th despite the fact he had written "ASAP" on my orders, he got more involved. I got a call late yesterday from scheduling saying they were changing my appt. to this Monday. Yeah!

I had already tried to see if I could get an appt. at another location, to no avail.

I will also be getting a PET/CT scan as well, to see what might be brewing inside me. I suspect it's in my abdomen though, cause a couple of weeks ago I started noticeing an unusual feeling of fullness whenever I eat anything. At least for now, I will be getting my Herceptin, and then we will add to it when we know what's going on.

I have become a very "squeaky wheel" when I know something isn't right, after my experience in 2001. I was so naive back then. When my tumor markers first became elevated in June of 2001, we waited a month and then rechecked them. I figured if anything was up they would give me a call.

Well somehow I slipped through the cracks, and by the time they called me to order further testing, and got the results of the scans and ultra sound, my liver was riddled with tumors. My CA15-3 had been at 48 in June, and by the time I started on my Herceptin and Taxotere at the end of September, they were over 1000 and it was getting difficult to button up my jeans!

I made my Doc promise he would never let this happen again, but sometimes I think he gets complacent because I've done so well for so long. You just can't ever let your guard down when it comes to this disease!

Also want to mention, that my doc didn't have much faith in the Her2 Serum test, but he is now rethinking that position. His experience with me is teaching him, that yes, some tests are very accurate, for certain people.

Thanks to this board I started requesting that test a few years ago, and it was the first marker to go up in my case. My Her2 Serum results have never been low, even when I was on Herceptin (usually between 11 and 15) so going off the Herceptin might not have been the best strategy. I really did enjoy the break though. My energy level seemed to really increase, and my finger nails have even gotten noticeably thicker!

Unfortunately, I've always said, when I'm feeling really good, I think my cancer starts to feel good too. At least I've always been able lead a pretty normal life while on the Herceptin and Femara. I will miss the extra energy I've had, the last year, but it's not going to stop me from staying active.

I'm still hoping to get my new young horse out on the trail soon, and maybe into some limited distance endurance rides at some point! :-)

Jackie07 · 08-04-2012, 12:49 PM

Yes!

Glad your assertiveness helped get things moving!

StephN · 08-04-2012, 02:47 PM

Thanks, Kim, for the complete update.

You have things WELL in hand now that you got your nerve up to use the onc's cell number. That is why you have it - to use when you need him!

All the best for the scans to show a minimum of mets that you slap right back down.

Lori R · 08-05-2012, 06:59 AM

Kim,
While the reason for your recent post isn't the best of situations, I was glad to hear from you and of course view that beautiful picture of you and your horse. When I joined the board 5 years ago, your picture was an inspiration that someone with cancer COULD remain active and lead life filled with the things they love to do.

You were SO right to be the squeaky wheel. As you know, being passive with this disease is not a winning strategy. The herceptin has been so effective in the past, I am sure it will get back to the business of killing those cancer cells.

Here's to a speedy herceptin infusion....please keep us posted.

Lori

Ellie F · 08-05-2012, 10:04 AM

Kim
Glad you got this resolved quickly. After all it's your life not your oncs here. Let us know how your scans go. Hoping there will be nothing sinister to report.
Ellie

Andrea Barnett Budin · 08-05-2012, 10:33 AM

Hello Kim,

I too am glad to hear from you, though wish you weren't in this spot.

Like Steph, I'd definitely want to know what CT scans say. (Believe it or not, my fav onc doesn't believe in PETs and I've never had one.)

A few yrs ago, while off Herceptin for 2 yrs my tumor markers -- CA 27.29 -- that's the one we check started to go up. Scary. I couldn't wait the 3 mnths till the next bld test, so we tested in a mnth. Fav onc acquiesced as I was a mess.

My number was even higher. Same deal. Next mnth tested and was getting pretty frantic, as you can well imagine. (It was ME who found my metastasis throughout my liver requesting a sono when liver enzymes came back slightly, very very slightly elevated -- 3 x...) so I do stay on top of all my numbers. Gather every report. Compare every report w/previous reports. Study them. Who cares more about me than me. Docs are busy...

Talk abut run on sentences! I don't think that was a sentence. Anyway, 3rd CA 27.29 tumor marker test came back w/me -- out of normal range! Utter panic.

My fav onc said, In situations like this one of us must remain calm. We'll wait and try 1 more mnth. Other onc in NY said, What are you waiting for???!!!! You're trending upwards. Get back on the Herceptin, Andrea! My thoughts exactly.

Well, next test showed that my number had plummeted. Gone way way down. Mid normal.

In retrospect, I had been sick for 3 mnths w/a weird flu. My body was messed up. And that was reflected in my CA 27.29. I healed and got myself back to normal apparently. They tested that last number twice, cause they couldn't believe it! Came back the same.

Sharing my story to give you a little perspective, Kim. Hopefully all the stress you've been under (w/the selling of your 20 something yr old home) is the culprit. Not the return of cancer. Which is our first thought, once we've been through all we've been through. Learned a lot.

I too was so naive back in the day. Go riding. Live life. Breathe. Please keep us all updated. We're all in this with you now.

PS -- I am now 4 yrs off of H. It's there if I need it, but so far, I remain stable. So say my CTs and my blood work. I wish just that for you, Kim.

With love,
Andi

Kim in CA · 08-17-2012, 04:15 PM

Just an update on my PET scan and return to Herceptin.

First of all, big relief.....PET scan didn't show anything abnormal!

Now, spoiler alert, I'm gonna rant a bit!

After my Onc got the scheduling dept. to move my first Herceptin infusion to Aug. 6th, I had more hoops to jump through.

When I arrived at my appt. I was told they couldn't give me the infusion because they didn't have authorization from my insurance yet.

Now, I have been told by my insurance (Blue Shield) that no authorization is required for metastatic Her2 positive breast cancer. I have told this to the scheduling & authorizations dept. many times, but they insist that they still have to request it, and then wait for the letter that says I don't need authorization. Blue shield has told me that all the doctor's authorization person has to do is call the Blue Shield Medical Management Dept, and they can get authorization over the phone, but this wasn't good enough for them I guess, cause they just weren't cooperating. They said if you will just come back in a few days, we should have authorization by then.

I ended up telling them I would "self pay" just so I could get my Herceptin! Thank goodness my Visa card wasn't maxed out!

I'm still fuming at the the whole scenario! Anyway, all I can say is that I'm glad to be back on Herceptin, as my CA15-3 had gone from 49.3 on July 23rd to 76 on August 6th, and my Her2 Serum had gone from 26.8 to 49! That's a bigger jump than it made back in 2001 right before it spread like wildfire.

I just hate to get so mad (cause it's so not me) but our medical system is so dysfunctional. My husband and I pay a King's ransome ( over $30,0000 a year and one of the reasons we're selling our home) to have good medical insurance, and then we still have to go through garbage like this.

OK.....feel better now to have let off steam, thanks for listening!