Meds for Cramps

I talked to the nurse about the on again and off again cramps I’ve been experiencing over the past three weeks and she thinks its gas. In the past I’ve used Metoclopramide for relief from the effects of other chemos and that usually worked but I’m not having the same success this time with Brivanib.

So after three days with the trots, and then two days with no bm, I took two Senekot S and went to bed. Too late, I woke up around 11 with cramps and couldn’t sleep. So I got up and sat in a comfy chair and wrapped myself in blankets. This helped the cramping a little and I nodded off here and there. At 5 am I had the bm I’d been looking for. After that I found my way back into bed and had a couple of hours sleep before the alarm went off.

I’m going to give Metoclopramide one more try and take it exactly as prescribed, four times a day until I see the nurse in a few weeks. Otherwise, I’ll be looking for something else.

All Day at Clinic - How I metabolize the Chemo

Yesterday began a long day at the clinic; my Onc needs to see how I metabolize the chemo drug Brivanib over time. I was told not to take my chemo until I got there because they wanted to take my blood first. A nurse drew six vials through an IV in my wrist then took my bp and temp … both normal or near normal. Then I took my chemo. She repeated this twice over the next six hours.

As the day progressed, the trials nurse came by and I asked how my blood work was. She looked down and said where did your platelets go? My levels are 81 and should be at least 140. Platelets are the little guys that gather at a wound and clot blood. This not a big concern just yet.

We also discussed my high liver function numbers from two weeks ago and these tests show that they continue to go down, meaning the chemo is still working. Some numbers are now down to just being plain old high. Yahoo !!

My next blood work up is in two weeks, for just an hour.

Fluid in my Calves and Ankles

For about a week now, I’ve been having this thick feeling in my calves and ankles. I figure it’s a buildup of fluid also known as edema. It all feels tight … sort of like I’m wearing support hose when I am not and my legs feel stiff like boards.

Yesterday I noticed indentation marks around my ankles left from the elastic socks, tho my shoes still fit fine; I know it’s only a matter of time. When I was on Taxotere in 2008/09, my ankles became so swollen I had to cut the sides of my socks to allow for expansion. And my feet were so full of fluid that 99% of my shoes didn’t fit, they were just too tight. And when it got to that point, I wasn’t very steady on my feet anymore either.

It’s a side effect of Brivanib because when the Onc was first examining me before I was approved for the trials drug four weeks ago; he said … now let’s have a look at your ankles. I knew then it only meant one thing … I will be losing those beautiful thin ankles of mine. Darn it!

Tykerb - A Late Stage Cancer Drug

Tykerb is a late stage breast cancer drug prescribed for HER2-positive metastatic breast cancer patients who have exhausted all other treatment options.

The big problem is that it’s not covered under our Alberta Health Care Insurance Program, leaving the patient to bear the huge monthly cost. In an Edmonton Journal article, Kelly Mah with mets writes… “Both my husband and I have good jobs, but a cost of $3,500-$4,000 a month for the rest of my hopefully long life would be financially crippling. I became so stressed and depressed that I even contemplated forgoing the drug and letting nature take its course.”

About Tykerb from a Cross Cancer Centre Institute medical oncologist and U of A assistant professor Dr. Katia Tonkin says in the Edmonton Sun about Tykerb..."It really is a tremendous new class of drugs in breast cancer for what can be a very difficult group of patients to treat. I think it's very important to have it available," she said, adding it's "appalling" that anyone wanting to take the drug would have to spend tens of thousands of dollars a year.

Taking up the fight is fellow bc blogger Brenda from Brenda’s Breast Cancer Journey .. she has petitioned our politicians demanding that Tykerb be covered under our Alberta Health Care Insurance Program. Way to go girl !!

I hope that sharing this info about Tykerb will give us mets folks access to all treatment options. Treatment options are what keep us alive and kicking. So the next time you hear about the new drug Tykerb, you’ll know something about it.

My Newest Daily Routine

OK, I’ve officially been on Brivanib for three weeks now and I have to say, this last week was much better than the first two … and that’s for sure. And the really good news is that I’ve got all the side effects down to a dull roar.

My daily routine starts off with the alarm going off at 7:30 and I drag myself out of bed. After a few minutes, I take three bp readings, have my coffee and take four Brivanib pills. At 8:30 my cell phone alarm goes off to remind me to take my two bp meds, have some more coffee and some breakfast. After a bit it’s mid to late morning and I go over my blog and post it. Then I lay down for an hour snooze; I feel so refreshed afterwards.

I then get up for good, have a high protein ensure drink for lunch, shower and get dressed. If my energy is up I get out of the house and taking care of any stuff. If I’m not feeling so chipper, I wrap myself up in blankets in front of the TV, grab my laptop and surf.

Around 6: we have supper and D and I watch the evening news. When my cell alarm goes off at 7:30, I take three more bp readings and average them all in a spreadsheet for my Onc. By 9:00 I’m in bed and after a bit of TV, its lights out for the both of us.

I keep up this daily routine with the alarms and all to help me stay regular and on track with my meds. When you’re on chemo, you occasionally forget to do things. My memory is so bad these days … and between that and being so lazy, I’m afraid without some type of scheduling, some days could go by and I might not get anything done at all.

The Scar Project

According to the website, The SCAR Project is a series of large-scale portraits of young breast cancer survivors shot by fashion photographer David Jay.

The pictures are all of women between the ages 18 and 35. All the ladies are topless and bear the physical scars of breast cancer.

Warning this five minute video has nudity in it.

BP Check at the Clinic

This past Monday I got a call saying the trials nurse wanted to see me Wednesday. My first reaction was oh no … I hope there are no surprises in store. But it turns out all she wanted to do was check my bp. Because I wasn’t seeing her for eight days, she wanted to have a quick peak on what my bp levels were.

So the nurse proceeded to unravel a thigh cuff … I said, don’t you want to use my arm now? Oh I forgot, no more PICC eh? she just grabbed the thigh cuff out of habit. Then I said, I think we will be pleasantly surprised by the numbers and sure enough we were.

My first reading was 133/84 … yahoo! Wow that is really good she said. Prior to coming here, I said to D, I am going to take our home bp monitor with me to compare with the clinics monitor. So she alternated bp monitors, taking three more readings. They were all pretty well in line except, our home monitor appears to be five points higher on the systolic. That’s good to know and I will adjust for that.

Each morning I take three readings and average. This morning my bp is 122/85.

PICC Infection and BP Update

Thought I’d give you an update on how my old PICC line site is doing and how I’m feeling. First off, my PICC infection is doing better. It’s nowhere near as itchy as it was a few days ago; the redness and puffiness are down too … it all looks a whole lot better.

Next, my bp appears to be nearing normal levels using my drugstore bp monitor. I’ll have to get those verified by the nurse at the clinic tho. I’m thinking the bp medication takes a while to kick in because I’m not doing anything different.

I should be doing some walking now that my liver function has improved but I have lethargy kicking in from the chemo. Still, D says I should come with him and the dog when they go for their after supper walk. Even if we go just part way and turn around, that would be a good start.

New Metastatic Support Group

I am thrilled to say that the Cross Cancer Clinic is now offering a Metastatic Cancer Support Group for women. The focus of the group is to encourage dialogue among women with metastatic cancer. The launch of this program has been such a long time coming for all with mets.

The common ground that brings mets gals together is to help each other deal with the emotional realities when faced with living with mets. Each gal sharing their personal experience on treatment, how they cope and how they find hope.

I attended the very first two sessions and found that they’re so helpful to me. For example, last week we talked a bit about finding hope when hope is hard to find. I shared my experience to the group, sometimes when I’m low on hope, I create my own. I schedule a special event like go out to a dinner theater, maybe a mini vacation like a family visit in another city or just go out and buy a new outfit. 

For me, I find it always helps when you have something to look forward to and focus on. While this support group might not extend your life here, participating will give you a better quality of life while you are here.

So if you are in the Edmonton AB area and living with mets and would like to join, call the main reception number of the Psychosocial and Spiritual Resources Program at (780) 643 - 4303.