Xeloda and Tykerb for my Brain Metastases

A week ago my long awaited Xeloda and Tykerb arrived in the mail, so I could start my new regimen. I have had some friends have some great responses to Xeloda recently (most aren’t also on Tykerb), so I am super hopeful and nervous that I am hopeful. Hope gets you out of bed in the morning on some days – and I have needed some of that.

The brain metastases and winter threw me into a depression. This isn’t abnormal for me, but it isn’t a lot of fun for everyone around me. I am luckily starting to hike up the hill, getting back into a bit more normal Mandi.

I know when I throw drug names out that people with stage IV breast cancer that read my breast cancer blog are “in the know” – but I forget sometimes to explain what they are to other people (I have some friends and family that are curious in what the heck these medications do, and why I am changing them – except for fun, because side effect BINGO keeps me entertained nonstop!). I will explain these meds a little bit (I am not a doctor, I feel like I study enough to be one some days, but always talk to a medical professional before taking breast cancer blogger Mandi to be the end resource on anything regarding your health – I am only in charge of mine – and we see how swimmingly THAT is going).

A reminder course, breast cancer has 3 main “types” when we talk about it (3 main types that impact how they are treated, there is ductal, lobular and other starting points – but the types influence what drugs your oncologist prescribes):

Estrogen Positive Breast Cancer

(ER, hormone positive) – There is also a progesterone receptor that can be positive. When a tumor is estrogen positive there are a lot of medications that target this “weakness” in the cell. It uses estrogen to grow, so you can use lack of estrogen, or the ways that it consumes estrogen to attack it.


HER2+ Breast Cancer

This is one of the fastest growing kinds. It uses a HER2 protein to eat and replicate. All cells have a certain amount of these, but these tumors have a lot more. This can also be used against it (until Herceptin was invented, there wasn’t a direct therapy for the HER2+ variety and it was faster at killing women with stage IV breast cancer).

Source: http://roberthornungphilanthropy.com

Source: http://roberthornungphilanthropy.com

I did not have HER2+ breast cancer when I was initially diagnosed with breast cancer, SOME of my breast cancer cells became HER2+ after I became stage IV. Breast cancer cells are mutant cells. They change.

Triple Negative Breast Cancer

All three receptors mentioned above are negative. It does not have targeted therapies as we know them at the moment (there are different weaknesses being studied and immunology is spending energy trying to find a way to “break in” and kill these cells). The primary treatment is chemo.


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This image is from http://ajp.amjpathol.org/article/S0002-9440(13)00526-9/fulltext

I keep a page on my blog that lists the therapies I have had and when I had them. Mostly because I hope that this information is helpful to readers and maybe someday researchers (plus I have a natural curiosity on how and when people change treatments, so sharing it openly helps the me’s of the world).

Recently was on Perjeta/Herceptin which target HER2+ and Aromasin which targets the Estrogen receptor. I started Affinitor which is an MTOR inhibitor in the diagram above, but I wasn’t on it long enough to see an impact. These are all what we call targeted therapies. Which means I keep my hair, side effects aren’t quite like chemo, but not always “easy.” Only the estrogen therapies reached my brain, and the rate of growth of the tumors in my brain recommends that they are HER2+ – so…

We switched to Xeloda (which is what everyone is familiar with as an actual chemotherapy – but it is 6 pills I take a day rather than sit in an infusion chair). There are many ways it is prescribed, I am 2 weeks on and 1 week off (I take it for 2 weeks and 1 week I don’t take it). I take 1,500mg each go – so 3,000mg a day. I will keep my hair, and so far, Xeloda isn’t causing me too many issues. The tougher side effects come out later if I get them (it is called hand-foot syndrome, where your hands and feet can get red, blistery, cracked and miserable). So I have to baby my hands and feet. I worry that this will impact my ability to cook and exercise, but I need to not work and live live live! Darn it!

I have a shoe fairy. She is awesome - and sent me some very soft boots to protect my feet.

I have a shoe fairy. She is awesome – she sent me some very soft boots to protect my feet. <3

The other medication in my regimen is Tykerb – this impacts the growth of the tumor cell by interrupting the HER2+ cell growth process. It has the nausea, vomiting, fatigue type of side effects.

I started them last week and I got super sick (this is not normal to have a strong nausea reaction, just me being me – keeping my crown o’ side effects). I couldn’t keep food in my body and just felt wretched. My oncologist had me stop both medications and we would start them back up separately. When they said this I realized if I didn’t take the Tykerb I felt mostly ok, so I kept taking the Xeloda. They are going to have me start the Tykerb on my off week of Xeloda and see how that goes (and how getting it back in my regimen works out). It is 5 pills. So the regimen is 11 pills, no wonder my tummy was pissed! Part of me wants to try and start it back up sooner (I will restart at 4 pills) – I don’t want to be that sick again though. Boo!

Both of these medications should be able to reach the tumor cells in my brain! Yay! Along with my body. I am hoping to gut punch the Bob, Frank and Lloyd’s in my brain and slow down their wee little friends floating around thinking they may want to take up residence. The fear on switching was that the Perjeta and Herceptin were so effective against my tumors and were keeping my body stable – that if the new drugs don’t keep my body stable, we could end up in a world of hurt. As my brain isn’t the only place this sh** can kill me.

At the moment I am personally worried about the tumor growth in my brain – although my markers started to show more stability after radiation (which is a great sign!). Now hopefully we will see them go down or remain stable. My brain has always been a prized possession of mine, chemo has already beaten her up a bit.

That there is your “Mandi’s in depth explanation of what the heck is going on.” Long live the shoe fairy! <3

My bedhead messy hair. My lap is never empty at our house! :)

My bed head messy hair. My lap is never empty at our house! 🙂


Author: Mandi

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