Stage IV - Herceptin break cuz I wanted it

StephN · 04-20-2007, 11:58 AM

Good morning everyone -

Just wanted to report in after my 3-month Herceptin break that I took "just because." It worked for me! All my scans and lab work from last week were "just great" in the words of my med onc. My team was thrilled with my results, expecially since I am hormone neg/neg.

My onc left it up to me whether to resume at this time or extend my break. Keep in mind that this break was taken after being on Herceptin for FIVE solid years with no new measurable tumor activity apart from the two in my brain in 2003/04.

My life has been turned upside down with my father STILL in the cardiac ICU after almost 8 weeks. His staph infection is improving and they are trying to get him off the ventilator and breathing on his own after the infection moved into his lungs. Because of all this agonizing stress and heartbreak I have asked to resume my Herceptin and will have a loading dose next Wed. My team thinks this is wise under the circumstances, if only for prophylactic reasons.

My Dexa bone density scan showed good results and med onc sees no need to have any Zometa or other bone builder for while. My spine score is 118% of age matched normal values, but my hips and femoral necks are the 90's and 80's precentiles respectively. Need that vitamin D if I can ever get out of the hospital corridors! Thought you would like to know this is a better outcome than the Dexa scan I had just after completing Adriamycin, Taxotere and rads 6 years ago, when I was reading at 79% of age matched normal. Went on Fosamax after that.

I WILL have a colonoscopy done soon as they are now doing them at my cancer center. Had one 5 years ago and this one will be for the reason that people with one cancer are a greater risk for another cancer. Better safe than sorry.

On the subject of BREAST MRI's, and my cancer center was a leader in the research in which I participated, it is still not recommended in general and I will stick to the other new digital imaging they have.

TROVAX vaccine trial at the U of W is getting back on track and should start enrolling in the near future. I will be contacted at that time

Vi Schorpp · 04-20-2007, 12:16 PM

Great news Steph for you personally...I've been wondering about your dad, but since I didn't read anything I didn't want to ask. At least things are improving there also. Please take care of you and yours!

Kim in CA · 04-20-2007, 02:23 PM

Dear Steph,

I'm sorry to hear your Dad is still in ICU. Sure hope they can get him off the ventilator soon.

I have been wondering about your Herceptin break, so was very glad to read your post. I have been wanting to take a break myself, but I'm CHICKEN! I have been on Herceptin for over 5 years too with the only recurrence being the brain met in 2005.

We check my tumor markers(CA 15-3) every time I get Herceptin and have run the Her2 Serum test 3 different times now (which has always been in the normal range). Because my markers have always been in the high normal range (at least for the last couple of years) we have been hesitant to take a break.

My range over the last couple years seems to be in the mid to high twenties, with 31.3 of course being the cutoff. We only recently did a full body CT/PET scan because I had been having pain in my shoulder, but that came back clear. That was the first scan I had in over two years because I have been trying to decrease my exposure to radiation and felt that running the tumor markers and Her2 Serum would be better.

So, I just keep on with my Herceptin and am thankful to still be NED, but would love to take a break. I am due for a brain MRI and a MUGA , so will be scheduling them soon. Thanks for the reminder about colonoscopies (never had one of those, Oh Joy!)

Anyway, just glad you were able to take a little break and that it went well. Maybe I'll work up the nerve to try it too!

Love Kim

Adriana Mangus · 04-20-2007, 05:02 PM

Thanks for letting us know about your break from Herceptin. I think is smart to go back to Herceptin at this point, just in case, we all know that stress is our number 1 enemy under this circumstances. Hope all's well with your father now.

Take care, and as usual, I enjoy your postings.

tousled1 · 04-20-2007, 05:16 PM

Steph,

Sorry to hear your father is still in ICU but very happy to hear that you're doing so great after taking a Herceptin break. I think it does the body good to have a little vacation from infusions. Hoping your father will soon be better. I'll keep you both in my prayers.

sabpri · 04-21-2007, 12:10 AM

First - I am so sorry to see you having to go through those struggles with your dad. It is already hard enough handling our own health issues.

I am glad to see there may be a resurectin of the Trovax vaccine. I have been waiting and waiting and waiting for it.

I also wanted to just give you my two cents regarding a Herceptin break. Now mind you, at this time, I am still waiting on my HER test results. Long story short, I had 2 major tumors at diagnosis, completely and totally different characteristics. One was ER/PR+, Her2-, The Other was this weird crazy unexplainable (which is always me) tumor that was triple negative, but had a small subpopulation of less than 10% of the total tumor that contained a very strong Her2+ expression. My Onc saw it as a triple negative tumor with a weird wacky possibly Her2 minor componant, so she put me on Herceptin for the standard protocal for one year. I went off Herceptin in October 06, and in January 07 my Tumor markers went up slightly above where they were hovering for the past year after completing treatment. To me it was a Red Flag, but everyone told me I was paranoid and it was a normal fluctuation of 6 points (from 15 - 21) and not to worry. At my next Apointment 4/4, my Tumor Marker was up to 32 and I freaked, even though it ws still below the cut off at 38 for CA27.29. My Onc said we would draw blood again and schedule a PET, but reminded me that I was being overly anxious about a normal flucation and I would call her telling her I told her so. I told her I had HOPED she was right and not me. Long story short, my Pet showed innumerable bone mets and one spot on my Plural lining. Luckily the bone mets showed lots of uptake in activity on the scan, but not any lesions or breaks in my bones yet. Everyone was shocked but me. Now I am waiting on the Pathology. I got back the hormone receptor status one and it was negative, so we know it is going to come down to the almighty truth of Triple Neg or HER2+. I am really praying for her to be wrong and it is Her2+. I did so well staying in remission for over a year, and find it questionable that after being pulled off it in October, my numbers did a blip 4 months later, then 6 months later it may be back. Just wanted to make sure you heard my side as you are conteplating your decision, and if you do decide to go off, make sure you are being heavily monitored.
Love,
Natalie
38 year old Mom to 3 year old twins and 5 year old daugther

Margerie · 04-21-2007, 08:03 AM

Steph,

Good to hear from you. As always, you and your dad are not far from my thoughts. I hope you can both celebrate at least a small victory soon.

I am glad your herceptin break has been a success. I have heard about people having "maintenance" herceptin, and I believe the dose is once every 3 months. That wouldn't be too bad.

Good luck with the TroVax! I hope this study gets underway soon. I completed my DNA plasmid series and feel better that I have another tool in my tool belt.

Lolly · 04-21-2007, 08:08 AM

Dear Steph, I am as always awed by your courage, and you continue to inspire me and all of us. Your dad and you are in my thoughts and prayers as he continues to recover and you resume Herceptin...sending you hugs,
<3 Lolly

Cathya · 04-21-2007, 09:23 AM

Steph;

I am glad you are doing so well and can certainly understand wanting to take a break from the herceptin. I would suggest that you consider having the Serum Her2 test done every couple of months just to monitor things.

Cathy

anne2 · 04-21-2007, 12:39 PM

Hi StephN,
I am happy to hear your news and am keeping my fingers (and toes) crossed for you.
Best of health,
Anne

StephN · 04-21-2007, 12:56 PM

To answer some of your questions and concerns. First of all, Dad turned a small corner yesterday so we are more hopeful.

In my case markers have always been a good indicator of my disease path. They draw both the CA27-29 and CEA each 3 weeks and they have been well into normal range and steady as a rock for years now.
The 27-29 may move a point one way, but then is back the next time. CEA is unchanging and very low.

The HER2 serum has been run on me twice and with good result. I will have it again in a month or so. We did it just prior to my break along with a PET/CT. Based on literally YEARS of data on me, my decision was made with med onc's blessing.

I noticed in another post that Dr. Slamon is now saying that a 6-7 years remission or complete response on Herceptin may be considered a CURE! Manna from heaven - those words! This is the idea/direction that I and my med onc are perhaps toying with at this point.
Go for it Ginger Empy and Christine who are past that time frame! And Kim and a few others of us stage IV long remission types getting there.

mamacze · 04-21-2007, 08:08 PM

Dear Steph,
I logged on tonight, hoping to get an update on just how you are doing and, oh my; what a run you have had with your dad! This is a hard time for you; the emotional turmoil and questions of what to do are so difficult. And then to read, 5 years on Herceptin...you are an incredible warrior to be brave enough to voluntarily take a 3 month break...how relieved I am to read that you are still in the "well-zone". I am kicking up my heels for you! I am so heartened as well, to hear your comments on Dr. Slamons latest musings; I hope and pray he is right, for all of us.
It sounds like, all things considered, then that you are ok.
I too, am ok. Still, at this point, NED. Struggling, with salmon, flax and daily exercise to keep my MUGA within acceptable limits. Other than this pesky Stage 4 diagnosis, I am healthier than I have ever been!
So God-speed my dear soul sister; stay calm and well in the storm of your dads ups and downs... and lets stay tuned to D. Slamon's good words!
Love Kim from CT
ps In the not too distant past, I had stints as a nurse and nsg home administrator...if I can offer any help with your dad, feel free to email me.

Joy · 04-22-2007, 09:18 AM

Thank you so much for the updates and very helpful informaiton. I will remain hopeful for your father as he turns a corner and pulls out of all he's been through (all that all of you have been through). I'm so happy the you are so rock solid and got a break and can make great decisions with good people! How great would that be if you could hear the other "C" word, huh? Thinkijng of you and your family and Cures!