In this case, it's actually spelt nktr as in NKTR-102. That's the name of the trial drug I am currently taking. The name comes from the sponsor's name: Nektar Therapeutics in San Francisco. The study itself goes by the moniker BEACON (BrEAst Cancer Outcomes with NKTR-102). This is a Phase 3 open-label, randomized, multi-center study of NKTR-102 versus treatment of physician's choice (in my case it would have been paclitaxel) in patients with locally recurrent or metastatic breast cancer previously treated with an anthracycline, a taxane, and capecitabine.
NKTR-102 slowly releases a chemotherapy drug called irinotecan into the body, thereby allowing it to stay in the body much longer. NKTR-102 was designed to eliminate some fo the side effects of irinotecan while improving its efficiency through modifying the distribution of the agent within the body. The study will look at how my cancer responds to the study treatment and how long people treated with this drug survive. It will also examine the side effects of the study drug and see how long it stays in my blood. About 840 women from up to 25 countries, ages 18 and older, with advanced breast cancer are expected to be in this study.
I will receive NKTR-102 on Day 1 of each cycle. One cycle is 3 weeks, or 21 days, long. The drug will be given intravenously over a 90-minute period. The day before each cycle starts, I will have blood tests and see my oncologist. All this will be done at the BC Cancer Agency in Vancouver. I'll also have a CT scan every 8 weeks - this helps monitor disease progression/regression.
Although the study is slated to complete in 38 months, I will continue to receive the study drug as long as it is helping stabilize my cancer, the side effects are acceptable, and I wish to continue even after the study has ended.
The most commonly reported side effects during other research studies of NKTR-102 include: diarrhea, nausea/vomiting, fatigue,decreased appetite, low red and/or white blood cells, hair loss, and blurred vision. If any of these side effects - or any others listed or not listed - become unbearable, I have the right to withdraw from the study even if subsequent CT scans and other tests prove that it is having the desired effect. Quality of life continue to be paramount.
So, there you have it. That's what I'll be doing for the foreseeable future.
Aside from temporary vision changes, common (for me) fatigue, and slightly decreased appetite, I'm fairing pretty well so far. Of course, most side effects tend to be cumulative, in my experience. I read somewhere in the literature that diarrhea is most noticeable after two or three cycles so suspect more drama in the future. As for the hair loss thing, no biggie in my view. Once again I'll save a bundle on grooming costs! And with winter coming on, I'll have more excuse to wear some stunning toppers. Heck, even found a pattern for a hat that looks like knitted hair. Should I be a blonde? red-head? or go all out with a Gaga pink number? Hmmmm.
Monday, August 20, 2012
Friday, August 17, 2012
Guinea Pig Diaries
Title of this post could be a new name for the blog. Yup, I'm being given the trial drug. Too tired to give details now. No bad side effects yet but suspect they will appear soon enough. Many thanks to Donna, Roz, and Penny for support and potential medical assistance before I made it safely back home. Back to bed now. Will write more later.
Friday, August 10, 2012
Study prep
Spent a couple of days this past week in Vancouver undergoing a series of tests - CT scan, bone scan, various blood tests - in prep for the drug trial I'm slated to join. Test results will be available when I go back in this coming week.
Had a very cool experience when undergoing the bone scan at VGH. The scan was given on a new piece of equipment that can perform a number of different tests without having the patient move off the machine let alone to another room. First I had the bone scan: I lay flat on the bed portion of the machine. The machine slowly passed over my body, taking photos every 30 seconds or so. Since I have been having trouble with my right hip/pelvis/upper leg area, the tech then performed another scan. I didn't move from my previous position other than to raise my arms over my head (for the bone scan arms are at my sides). For this procedure, the machine moved in a arch across my body while I laid still on the bed. Then, again due to the area of concern, I was given a CT scan of the pelvic region (the CT scan I had the day before at the Cancer Agency focuses on my chest and abdomen, and didn't include the pelvic region at all). Only discomfort came from having my arms over my head for the duration of the pelvic scan and the CT scan. Oh yes, and my lower back complained bitterly when I had a coughing fit after first laying down.
Had an odd phone call yesterday. The study nurse asked me to go to St Mary's for another blood test. This after giving up at least 10 viles of blood over the course of two day in Vancouver! Seems one of the samples underwent some sort of agglutination (my but I'm learning a lot of new words!) prior to undergoing whatever test needed to be performed. So off to St Mary's for another blood test today.
Is it any wonder my right inner arm is a tad sore and bruised? Too bad lack of lymph nodes makes my left arm unusable for blood tests, blood pressure readings, injections or IVs of any kind ...
Had a very cool experience when undergoing the bone scan at VGH. The scan was given on a new piece of equipment that can perform a number of different tests without having the patient move off the machine let alone to another room. First I had the bone scan: I lay flat on the bed portion of the machine. The machine slowly passed over my body, taking photos every 30 seconds or so. Since I have been having trouble with my right hip/pelvis/upper leg area, the tech then performed another scan. I didn't move from my previous position other than to raise my arms over my head (for the bone scan arms are at my sides). For this procedure, the machine moved in a arch across my body while I laid still on the bed. Then, again due to the area of concern, I was given a CT scan of the pelvic region (the CT scan I had the day before at the Cancer Agency focuses on my chest and abdomen, and didn't include the pelvic region at all). Only discomfort came from having my arms over my head for the duration of the pelvic scan and the CT scan. Oh yes, and my lower back complained bitterly when I had a coughing fit after first laying down.
Had an odd phone call yesterday. The study nurse asked me to go to St Mary's for another blood test. This after giving up at least 10 viles of blood over the course of two day in Vancouver! Seems one of the samples underwent some sort of agglutination (my but I'm learning a lot of new words!) prior to undergoing whatever test needed to be performed. So off to St Mary's for another blood test today.
Is it any wonder my right inner arm is a tad sore and bruised? Too bad lack of lymph nodes makes my left arm unusable for blood tests, blood pressure readings, injections or IVs of any kind ...
Fabulous Fibre - with photos
Finally got around to photographing some of the stuff I produced during the short course I took at Cap U. Before I do the show-and-tell thing, I would like to say a few things about how the course altered the way I view textiles in general (more "shake me up, Judy stuff"). Remember, I haven't altered much cloth before so seemed to have a number of "ah ha" moments as things went along. Am sure some of my fibre friends will understand what I mean.
When I first learned to weave back in the days before the Earth cooled, I would find myself deconstructing the weave structure of the jacket worn by the man in front of me in the post office queue or the colour sequence of the fabric on the chairs in a restaurant. Now every shape is morphing into negative as well as positive form. Every textile is imagined in another context - as a stamp, screened image, or rubbing on cloth. I wonder about the dye recipe required to reproduce a colour that draws my attention. And I try to imagine the interplay of various patterns, textures and colours in new ways. In other words, I'm trying to push my creative side beyond its comfort zone. Perhaps that's why little of what I've created in the class really appeals. Have yet to produce much that inspires me to reproduce it as yardage let alone a garment or other finished item. That said, I've had a lot of fun throwing dye and paint around while exploring some new-to-me techniques.
Since the course ended, it seems my mind has been working overtime. Have plans to try working with various medical images (using my own CT scans, bone scans, etc) as well as general cancer-related stuff. But NOT that stupid it's-all-about-business-and-not-about-raising-money-for-research-or-otherwise-helping-those-who-need-help ubiquitous ribbon!!!! (So, Janet, tell me how you honestly feel about the Pink Ribbon Campaign.) Have some technical difficulties to overcome, but that might also push me to explore less obvious means of producing what my brain seems bent on creating. Stay tuned for further developments.
In the meantime, here are images of some of the cloth produced while at Cap U:
Above are some of the sample swatches made using stamps I made. The bottom ones were produced by gluing thin cork sheeting to blocks of wood. The basic stamp design is best seen at bottom right. I wasn't very keen on the larger block, especially when I rotated it as at bottom left - looks too much like an ethnic print from a culture that is not my own. Much prefer the smaller block at the bottom of each of the two lower swatches. Of all the blocks I made, I was happiest with the one used for the two upper swatches. Due to the fact that the lines weren't drawn to produce a bulls-eye, the resulting images often incorporated intersecting and overlapping lines that could be used as water, rain, maze, or labyrinth motifs, among other things. However, given the stamp (which was carved from a rubber-based block that is essentially an oversized eraser - much easier to carve than lino) is only two inches by three inches and about half an inch deep, it was awkward to hold and print without adding fingerprints to the design. And would take more time than I was willing to put into the effort to produce yardage.
My solution to the two latter issues was to make a larger version of the lined stamp. Unfortunately, I didn't draw the lines exactly as in the smaller version and the effect wasn't quite as nice. I did, however, enjoy playing with various fruit and veg as stamps.
This sample was a tad difficult to photograph. It's the result of mopping up G&S's pigment system process blue, yellow and magenta medium that I splattered on the plastic sheet that protected the work table. Like the interplay of colours as well as the range of colour shifts where more than one process colour hits the cloth.
This cloth started with a more saturated application of the G&S colours. Unlike the previous samples, this one is done on 100% linen. LOVE how the texture of the fabric works with the colour and the white pigment that was subsequently stamped over the colourful base. This stamp was produced by wrapping very hairy string around a block of styrofoam. The almost-square bits are where the styrofoam occasionally touched the cloth. What I like most about this piece is how the hairs on the string add to the randomness of the pattern.
Next up, screen printing. Years ago I did a bit of screen printing on paper and really enjoyed the process. Not sure why I didn't keep at it. In any case, here the screen was used to produce stand-alone images as well as layered images on some of the cloth that was previously printed and/or dyed. This is the image I used just after I drew it on the silk prior to adding the emulsion. The 8x10 inch screen didn't leave a lot of room for the squeegee, so I ended up using a wide plastic putty knife. This proved a bit of a problem re getting even pressure when pulling the ink over the image. Having so many little and fine lines didn't help. A good learning experience all 'round. (FYI, the decision to draw a crab came from the fact that the background cloth I was going to print on reminded me of water. It has absolutely not a reference to my medical condition. Confess I didn't even think about that until the instructor got teary-eyed after seeing what I drew. That said, I may use it as a cancer reference sometime in the future.)
I used this sample to create a montage of the various images and techniques I was experimenting with throughout the course. The background was made using that larger rubber stamped with curved lines, while the smaller cork stamp was used to make the "seaweed" near the crabs. The crabs were silk screened. I was disappointed with the result of stippling pigment directly onto the cloth using the tip of a stencil brush (lower right corner) but think a bit of machine embroidery will help it look more like coral than it does at present. The fish was created by painting freehand directly onto the cloth using several colours. The thought was to free-motion machine embroider over that area, highlighting the painted lines. Here are some detail shots of the cloth:
Really liked the way the background colour and stamp looked on that saturated piece of linen above, so wanted to trying messing about with a larger piece using the silk screen technique. Started off with a remnant of cloth that I bought at IKEA to use as the reverse side of my duvet cover. The fabric came in a pre-cut length. The background was a lovely natural grey-brown and the white spots were printed/painted on at the manufacturer's. The irregular edge of the irregular-sized white spots seemed to call out for use in a fibre project of some sort. The spots reminded me somewhat of the moon, so here's what I did:
No doubt it sounds a bit odd, given what I said above re the crab image and the fact that I'm a Pisces to boot, but actually gave this cloth a name (the only cloth given a name of any sort): Cancer Rising. As in the constellation Cancer - remember what I said about the spots reminding me of the moon? Plan to hand embroider the constellation over the piece. Here's a close-up of the printing (yes it's blurry and the cloth needs ironing):
That's all I've done so far. Hope whatever drug the study throws my way doesn't upset my hands too much so I can do some more work on these as well as other pieces that are currently taking up so much brain space.
On another fibre note, I whipped up a couple of knitted garlic bulbs for Jon to take to the Garlic Festival in Pender Harbour tomorrow. Just something fun to add to all that edible stuff.
When I first learned to weave back in the days before the Earth cooled, I would find myself deconstructing the weave structure of the jacket worn by the man in front of me in the post office queue or the colour sequence of the fabric on the chairs in a restaurant. Now every shape is morphing into negative as well as positive form. Every textile is imagined in another context - as a stamp, screened image, or rubbing on cloth. I wonder about the dye recipe required to reproduce a colour that draws my attention. And I try to imagine the interplay of various patterns, textures and colours in new ways. In other words, I'm trying to push my creative side beyond its comfort zone. Perhaps that's why little of what I've created in the class really appeals. Have yet to produce much that inspires me to reproduce it as yardage let alone a garment or other finished item. That said, I've had a lot of fun throwing dye and paint around while exploring some new-to-me techniques.
Since the course ended, it seems my mind has been working overtime. Have plans to try working with various medical images (using my own CT scans, bone scans, etc) as well as general cancer-related stuff. But NOT that stupid it's-all-about-business-and-not-about-raising-money-for-research-or-otherwise-helping-those-who-need-help ubiquitous ribbon!!!! (So, Janet, tell me how you honestly feel about the Pink Ribbon Campaign.) Have some technical difficulties to overcome, but that might also push me to explore less obvious means of producing what my brain seems bent on creating. Stay tuned for further developments.
In the meantime, here are images of some of the cloth produced while at Cap U:
On another fibre note, I whipped up a couple of knitted garlic bulbs for Jon to take to the Garlic Festival in Pender Harbour tomorrow. Just something fun to add to all that edible stuff.
 |
| Dang focus! Card reads "HMO* Garlic. High fibre content. *handmade object, 100% wood, poly stuffing" |
Last Olympic Post
Am getting an idea re how hard athletes train for the Olympics.
This week Google has been posting interactive doodles (those nifty graphics you see that make up the word "Google" when you first login to make a search) around various sports themes. Depending on the doodle, you either use the forward and backward arrow keys, the space bar, or both. I totally suck at this! Guess I just can't move my digits fast enough. Have never made it to the three-star level. Ever. Obtained two stars in hurdles and in soccer - after several attempts (some games are a bit hard to figure out at first, at least for non-gamer me). Produced rather large cracks on the front of the kayak during the obstacle course, and left the athletes looking more than a bit dejected on several occasions, e.g. when the runner knocked down every huddle. In any case, it was a lot of fun playing these games. And it clearly brought out my more competitive side.
This week Google has been posting interactive doodles (those nifty graphics you see that make up the word "Google" when you first login to make a search) around various sports themes. Depending on the doodle, you either use the forward and backward arrow keys, the space bar, or both. I totally suck at this! Guess I just can't move my digits fast enough. Have never made it to the three-star level. Ever. Obtained two stars in hurdles and in soccer - after several attempts (some games are a bit hard to figure out at first, at least for non-gamer me). Produced rather large cracks on the front of the kayak during the obstacle course, and left the athletes looking more than a bit dejected on several occasions, e.g. when the runner knocked down every huddle. In any case, it was a lot of fun playing these games. And it clearly brought out my more competitive side.
Wednesday, August 1, 2012
being a guinea pig ...
just might include the chance at an Olympic medal! Check out this newspaper article about some of the competition. Yup, Ian Miller and other champions of the past have much to worry about ...
http://www.dailymail.co.uk/news/article-2177688/London-2012-Olympics-Company-designs-Guinea-Pig-Olympics-calendar.html
Of course, I could also be a super hero solving major crimes such as, um, lettuce theft:
http://www.dailymail.co.uk/news/article-2177688/London-2012-Olympics-Company-designs-Guinea-Pig-Olympics-calendar.html
Of course, I could also be a super hero solving major crimes such as, um, lettuce theft:
Random Thoughts
Well, the Cancer Agency doesn't waste any time! Have my treatment schedule for August now, and it looks like things will be rather busy for the next couple of weeks.
On Aug 7 I report to the Agency for "baseline" blood work followed by a "baseline" CT scan. This will help the study team determine if I am, in fact, able to be on the drug trial mentioned in the last posting. Given my current lower back and hip issues, a bone scan may also be in the offing.
The following week, once all those test results are back, I'll be randomized into either the trial drug group or the control group - assuming I meet all the study criteria.
On Aug 15, I will begin Day 1 of the first treatment cycle. This means more blood work and a follow-up meeting with the oncologist. At that time, the dosage of whatever drug I'll be taking will be determined. The first dose will be administered the following day.
All of this will take place in Vancouver. Treatment is scheduled for every three weeks (no matter which drug I'll be taking). Ongoing testing and regular progress meetings will also be done at the Cancer Agency in town.
Fingers crossed I get the trial drug. It will be my first exposure to an investigative medication - I've always been in the control group. Perhaps I will get a guinea pig-style haircut to celebrate. Question: Which style best says "me"?
On Aug 7 I report to the Agency for "baseline" blood work followed by a "baseline" CT scan. This will help the study team determine if I am, in fact, able to be on the drug trial mentioned in the last posting. Given my current lower back and hip issues, a bone scan may also be in the offing.
The following week, once all those test results are back, I'll be randomized into either the trial drug group or the control group - assuming I meet all the study criteria.
On Aug 15, I will begin Day 1 of the first treatment cycle. This means more blood work and a follow-up meeting with the oncologist. At that time, the dosage of whatever drug I'll be taking will be determined. The first dose will be administered the following day.
All of this will take place in Vancouver. Treatment is scheduled for every three weeks (no matter which drug I'll be taking). Ongoing testing and regular progress meetings will also be done at the Cancer Agency in town.
Fingers crossed I get the trial drug. It will be my first exposure to an investigative medication - I've always been in the control group. Perhaps I will get a guinea pig-style haircut to celebrate. Question: Which style best says "me"?
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