We went to our first appointment with Dr Fran Boyle, my oncologist for chemo, this morning. She is brilliant, I am so lucky to be seeing her. I really liked the fact that she is not only is she right at the forefront of the field, but she is such a nice person, easy to talk to. Top chick. She is interested to get to know more about us, who we are and what we do, not just the clinical conditions. That really fits in with how I see things - I am still me, I still do what I do, I just happen to have a few diseased cells that we are getting rid of. My disease is not me, I don't want it to take over.
Dr Boyle explained things so clearly. I probably won't be quite so clear, but here goes. My particular type of cancer is 'her2 positive'. This means that it responds to a drug called herceptin which I'll receive after a first set of chemo treatments. It is caused by a fault in the genes, but not an inherited one. No one knows yet what starts it, but we do know that this type of cancer is not hormone receptive ie nothing to do with the pill. One gene to do with epidermal growth suddenly decides to start reproducing itself and causing trouble. Her2 knocks that one the head. Only 15% of breast cancers are her2 positive, so I'm feeling special! It's good news, because it's something very effective that can be done to stop this coming back.
There is also another drug called lapatinib currently being trialled across the world which stops the rogue gene in a different way, cutting off how it communicates from the inside of the cell. I'm going to try to get on the trial, and so I'm having a heart test at some point soon to check that I'm all good to go.
How amazing, don't you think? All these brilliant minds and incredible research, all to get the best outcome for little people like me. Apparently some countries don't fund herceptin (and at $60,000 for a year, you can see why) so I'm pretty happy to be living where I'm living, with all these top specialists and facilities just down the street. I love where we live, but I never thought it would bless me like this.
So, the plan is this: if further surgery needed (ie another 5 star trip to the Mater - however will I cope?! ;-)) Dr Boyle recommends doing that first. Then we start on a first round of chemo, with a session every 3 weeks for 12 weeks. Then I start on a second round of chemo, with 12 weekly sessions with smaller doses, for 12 weeks. That's when I will be truly grateful to be living and working 2 minutes away from 'chemo cottage' I think. That is also when the herceptin starts. After the second set of chemo, hercpetin carries on through radio therapy auntil 12 months. Also the trial, if I'm lucky enough to get on it, will involve tablets at this time.
I am VERY keen to get on with it. A little impatient, but perfectly happy for everyone to be completely sure they are getting this right before we start. Watch this space!
xxx Kathy
Sunday, November 29, 2009
Thursday, November 26, 2009
Some more good news today
Had my post-op appointment with the brilliant Dr Kylie Snook today.
We were hoping to find out whether margins around bit they chopped out were clear, which will determine whether or not further surgery needed. However, pathology still working, so nothing finalised, and we won't know until next week. Two key margins are clear (hooray), still looking at the last one (almost there, still don't know).
The reports all go to a meeting next Weds, and we meet again with Kylie (the surgeon vs the singer) on Friday to determine whether surgery + chemo + radio needed, or just chemo + radio.
Great news is that only two lymph nodes were affected, rest all clear. And apparently I do still have some lymph nodes as well, so that's nice then. My rings still fit my finger - very happy about that.
Still no pain, and mobility normal in shoulder area. Now that I've dared to look, can also confirm that new boob looks better than old one - nice work Kylie!!
We were hoping to find out whether margins around bit they chopped out were clear, which will determine whether or not further surgery needed. However, pathology still working, so nothing finalised, and we won't know until next week. Two key margins are clear (hooray), still looking at the last one (almost there, still don't know).
The reports all go to a meeting next Weds, and we meet again with Kylie (the surgeon vs the singer) on Friday to determine whether surgery + chemo + radio needed, or just chemo + radio.
Great news is that only two lymph nodes were affected, rest all clear. And apparently I do still have some lymph nodes as well, so that's nice then. My rings still fit my finger - very happy about that.
Still no pain, and mobility normal in shoulder area. Now that I've dared to look, can also confirm that new boob looks better than old one - nice work Kylie!!
Wednesday, November 25, 2009
Home again
I came home from the wonderful Mater hospital yesterday evening with my three beautiful boys. I feel I have a very good testimonial for private health insurance in me right now! I can't believe how lucky I am to have had that amazing care and such fabulous facilities, right at the end of the street. So good to be home and back to some sort of normality again.
I am also feeling so grateful to my surgeon, Dr Kylie Snook, who has left me in so much better shape than I imagined possible. I am experiencing no pain and seem to have full mobility in my left arm and shoulder. I will keep taking my panadol (yes, that's really all) and doing my physio exercises to make sure nothing changes, but just can't believe how good I feel after such major surgery.
I have to carry a post-op drain around in a custom-made little black shoulder bag for a few days. No big deal, everything made as simple and as comfortable as possible.
Busy morning, with visits from Apac nurse, physio, Susie Cummins and Mim looking after Henry
Bear. Great to have so much support, but I'm also enjoying a little quiet time before the Bear gets back.
I am also feeling so grateful to my surgeon, Dr Kylie Snook, who has left me in so much better shape than I imagined possible. I am experiencing no pain and seem to have full mobility in my left arm and shoulder. I will keep taking my panadol (yes, that's really all) and doing my physio exercises to make sure nothing changes, but just can't believe how good I feel after such major surgery.
I have to carry a post-op drain around in a custom-made little black shoulder bag for a few days. No big deal, everything made as simple and as comfortable as possible.
Busy morning, with visits from Apac nurse, physio, Susie Cummins and Mim looking after Henry
Bear. Great to have so much support, but I'm also enjoying a little quiet time before the Bear gets back.
Tuesday, November 24, 2009
The story so far...
I've decided to set up this blog because I am so blessed with support from friends and family but I'm struggling to keep everyone up to date with how I'm doing day to day. So, log on whenever you like and I'll do my best to keep it current.
As I'm sure you already know, on Monday I had a small but mean lump removed from my left breast and will be starting chemo and radio therapy soon, when it’s all healed. I’ve caught this thing early and prognosis is very good. I am in good spirits, very positive and keen to get on with the work I’ll have to do over the next few months and looking forward to coming out the other side with a clean bill of health. I’m aiming to be skiing next year!
This is not the hand of cards that anyone would want to be dealt, but these are the cards I have, and now it's up to me to play my best game with them. I plan to return to wellness and normal life as quickly and completely as possible, with optimism, strength, humour and love.
No pain at all from the surgery, which seems strange, but I'm not complaining! I also seem to have full mobility in my arm and shoulder, despite having my lymph nodes removed. Who needs them anyway?! I'm very glad that it's my left arm, makes life a lot easier. I have a 'drain' from the surgery, which means carrying a small bottle around in a little black shoulder bag for a few days. Hoping to go home when Mike finishes work tonight.
Mind you, it's a lovely day out there and I'm tempted to do a runner. Better not.
Bill and Henry know that I have had an operation to have the lump removed, and then I’m going to have lots of strong medicine that will make me feel a bit sick and tired for a couple of days after each time I have it. They know the medicine is going to make my hair fall out and so I’ll be wearing wigs etc but it will soon grow back. They know life will carry on as usual as much as possible, but that things will be different for a few months. I haven’t used the word 'cancer’ yet, but think Bill has worked it out. Bill thinks that it would be pretty cool for me to go around bald and thinks that I'm going to grow a beard.
Dr Henry came in with Mike last night and charmed the ward, funny little man.
Mike is being amazing, 100% the person you would want to have by your side when tackling something like this. When a real challenge comes along, that's when you see how someone steps up. And he has really stepped up. How wonderful that after almost ten year's of marriage you can have the opportunity to really see what your husband is made of. Darling, I love you so much.
This journey, I think, will be very enriching in terms of the important relationships I have.
As I'm sure you already know, on Monday I had a small but mean lump removed from my left breast and will be starting chemo and radio therapy soon, when it’s all healed. I’ve caught this thing early and prognosis is very good. I am in good spirits, very positive and keen to get on with the work I’ll have to do over the next few months and looking forward to coming out the other side with a clean bill of health. I’m aiming to be skiing next year!
This is not the hand of cards that anyone would want to be dealt, but these are the cards I have, and now it's up to me to play my best game with them. I plan to return to wellness and normal life as quickly and completely as possible, with optimism, strength, humour and love.
No pain at all from the surgery, which seems strange, but I'm not complaining! I also seem to have full mobility in my arm and shoulder, despite having my lymph nodes removed. Who needs them anyway?! I'm very glad that it's my left arm, makes life a lot easier. I have a 'drain' from the surgery, which means carrying a small bottle around in a little black shoulder bag for a few days. Hoping to go home when Mike finishes work tonight.
Mind you, it's a lovely day out there and I'm tempted to do a runner. Better not.
Bill and Henry know that I have had an operation to have the lump removed, and then I’m going to have lots of strong medicine that will make me feel a bit sick and tired for a couple of days after each time I have it. They know the medicine is going to make my hair fall out and so I’ll be wearing wigs etc but it will soon grow back. They know life will carry on as usual as much as possible, but that things will be different for a few months. I haven’t used the word 'cancer’ yet, but think Bill has worked it out. Bill thinks that it would be pretty cool for me to go around bald and thinks that I'm going to grow a beard.
Dr Henry came in with Mike last night and charmed the ward, funny little man.
Mike is being amazing, 100% the person you would want to have by your side when tackling something like this. When a real challenge comes along, that's when you see how someone steps up. And he has really stepped up. How wonderful that after almost ten year's of marriage you can have the opportunity to really see what your husband is made of. Darling, I love you so much.
This journey, I think, will be very enriching in terms of the important relationships I have.
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