Kiri's first chemo treatment

kirismum

The big day finally arrived. And I think I'll let Kiri's facebook status update speak for itself:

First day went really well! I got to sit in a nice, comfy bed for 2 hours, eat free yummy food, watch trashy daytime TV about crazy people, and play iPod games with Justin. It's like a mini-vacation, minus the IV of chemicals in my arm thing -- which is not that hard to ignore and made me feel nice and loopy after! Score. Chemo=pretty damn okay.

I hardly need to do anything in these emails at this point except act as transcriber.

I was hugely relieved to find out that she'd been randomized into the Taxol/Lapatinib arm of the clinical trial at Dana-Farber. Given the blood/brain barrier issue, I couldn't have asked for a better choice. When I read that up to 30-40% of women with HER2+ tumors suffer metastases to the brain within 5 years, my entire bloodstream froze.[ Edited to add: I was entirely wet on this and neglected to read the term "metastatic", as in "30-40% of women with metastatic HER2+ tumors suffer metastases to the brain within 5 years." Mea culpa! ] Fortunately this included my tongue and fingers so I was able to prevent myself from passing on the information to Kiri. It looks like, unlike Herceptin, Lapatinib crosses the b/b barrier, so that puts that little paranoia of mine to rest.

The other two branches of the trial are Taxol/ Herceptin Taxol/Herceptin/Lapatinib.  Maybe the third combination, with both antibodies, would have been ideal, but it wasn't what I was hoping for. As part of her  treatment, Kiri will get Herceptin after her surgery for a year anyway. I figured it was better to limit the side effects if one drug could do the job of two.  Also, it avoids the possibility of her heart ejection fraction being lowered. She scored pretty high on the MUGA test - 71% - but that  won't be so relevant now that she's taking the Lapatinib. Later on it will be useful as a baseline measurement.

So, things may actually calm down a bit now, as she is "on the conveyer belt." :-) I just spoke to her on the phone and she's feeling fine, perfectly normal, about to eat dinner. No nausea, no reaction to the Taxol or the Decadron that they gave her before the treatment. They gave her Benadryl as well, so I reminded her about her paradoxical reaction to Benadryl that I discovered when she was three and being treated for a bad ear infection. She stopped sleeping. Completely. On a hunch, after two nightmarish weeks, I finally pulled her off it, and  she slept for three days . So I told her that when she found herself wide awake at three a.m. tonight, playing with her blocks, she would know why.

For myself, I'll take that nice glass of Cabernet now, garçon, and please bring me the rest of the bottle while you're at it.

CoolBreeze

Um, I had not heard the statistic that 30-40 percent of HER2+ women suffer mets to the brain in five years.  I think maybe you misunderstood something there.  Can you cite that source  please?  Thanks.

kirismum

Cool Breeze, here's the reference. I found it in quite a few places, but this is the first one that came up when I went to look again. Fourth paragraph. I don't know about the time frame, but I thought I read somewhere it was 5 years. I'll try to look further:

http://her2support.org/metastasis/brain-cns/brain-metastasis

septembersong

So glad to hear the day went smoothly! What a relief.

They can probably adjust the dosage of her Benadryl if it's causing her problems. They did with mine.

Where did you read that "...up to 30-40% of women with HER2+ tumors suffer metastases to the brain within 5 years"? That sounds counter to what I've read and what I've been told. (I ask for your peace of mind and for that of other women reading this thread, including me!)

In any case, I hope you and your husband sleep well tonight.

CoolBreeze

Okay, I think I found it and you are way off.  It's 30% of her2 women with METASTATIC breast cancer end up with brain mets.

I don't think your daughter is stage IV, right?  Did I miss a post?

kirismum

No, she's not Stage IV, Cool Breeze, thank God. I hope you're right and I am way off. I'll look further, but the reference I quoted does seem to be about metastatic breast cancer. The sentence that threw me was this:

"Unfortunately, the blood-brain barrier also prevents most breast cancer treatments (and other drugs) from penetrating into the brain. This results in HER2 positive patients having a higher incidence of brain tumors. Statistics are showing that about 30 percent to 40 percent of women who are Her2neu-positive and are treated with Herceptin develop brain mets. "

 Also, I think I read the same statistics elsewhere. But like I said, I sure hope I did misinterpret and you are right! And I'm still hugely relieved that she's on the Lapatinib, which covers her bets.

CoolBreeze

Kiri's mom, that article is written about metastatic women.  Thank you for finding it but one thing I found is when we are upset, we are very quick to find the worst.  Most of use who are HER2 and who have herceptin will not end up with mets, or brain cancer.  And, 70% who do end up with mets will NOT have it in their brain.

Enjoy your wine.  Mom to mom, I know you are upset.  But, stuff like that spreads like wildfire on this board and we don't want to scare women  more than they already are.

By the way, benedryl also made me hyper.  Unless I got it IV.  Then I found it very sedating. 

kirismum

CoolBreeze, you are absolutely right. I am embarrassed. I did somehow skip over that critical word "metastatic." Here's another reference I found in an article that I downloaded that supports your findings:

“It is true that treatments for MBC have improved dramatically over the past 10 to 15 years,” says Dr. Eric Winer, Director of the Breast Oncology Center at the Dana Farber Cancer Institute in Boston. Previously, MBC patients were not often surviving long enough to develop brain tumors. Now we know that a significant percentage of MBC patients will be faced with a brain metastasis.The risk is even greater for the HER2-positive patient population. By general estimates, 25 to 40 percent of HER2-positive patients will develop brain metastases in the first two years after they are diagnosed with metastatic disease, Dr.Winer says."

I added the italics. I am so sorry if I upset any of you, and I'll certainly try to read more carefully in the future.

 I must be catching chemo brain from my daughter or something. 

CoolBreeze

If you had chemo brain, you wouldn't even remember making your post. 

It's okay, we all know you are upset.   Now, you enjoy your wine and your husband.  Your daughter is going to be just fine.

lago

CoolBreeze is correct, they are talking about those with folks with stage IV (metastases ). With treatment my onc said I have an 84% chance of being alive and NED in 10 years. Not 60-70%

Glad to see Kiri is getting treatment. I know f I was back home I would be going to the Dana-Farbertoo.

CoolBreeze

Oh, and chemo brain means saying "enjoy your wine" several times in a few minutes and thinking its new each time.  lol

kirismum

Oh, and chemo brain means saying "enjoy your wine" several times in a few minutes and thinking its new each time.

 Works for me.