triple negative

Don’t call me sweety

10997206_10152768772784506_432502217_nI’ve decided to shun the wig. It was like wearing a woolly hat on those hot days and I almost drowned in my own perspiration. Maybe I’ll wear one on special occassions. So far two people (men) have said ‘Why aren’t you wearing your wig?’. The women all call me ‘sweety’ and pat me sympathetically on the hand. It’s quite funny to see the reactions of people I know. My Dad didn’t recognise me! The best of all was my friends son (who I have known since he was a child) who said ‘wow, I love the way you’ve cut your hair’. I was cheerfully dancing at that comment because he didn’t realize I had chemo hair. He may be a hippy but he made my day. Actually, I have to confess I’d always wanted to cut my hair really short (being an ex hippy myself) but I was worried that it would look bad and I would regret it and cry into my pillow for 100 years. So I’m trying to embrace it and so far so good. Just don’t call me sweety and pat me on the hand or I’ll have to show you just how sweet I am and get violent ha ha.

Mammagard

I’ve been struggling with nasty hip pain over the last 2 weeks. They tell breast cancer patients to get all new pain checked out but I have arthritis so I’d be wearing a track to the hospital if I did that. This is new hip pain is on the left side which is new, so I went to have a bone scan this week. I’m getting very little sleep from the pain. Arggh. I was all excited about bouncing around like a rabbit from here on. The problem with it is that I can’t get a massage or go to my usual chiropractor because laying on my stomach is uncomfortable with the breast tissue expander. My friend has invested in an Australian made product called ‘Mammagard‘ and I had the honour of meeting the ‘inventor’ who is an osteopath. He is selling his kits like hot cakes in the US and I feel privileged to have the use of one. I got to sleep on my stomach last night and that was awesome! So I’m hoping to get a massage and treated by my chiro/myotherapist next week. He said I can use it for my Body Balance class also but I’m not sure if I’m that co-ordinated. Soon I’ll be bouncing around like a rabbit for sure:) http://mammagard.com/

If you find laying flat uncomfortable for whatever reason (breast related) let your Physio/chiro etc know about it because they can buy a kit.

Burns

I know I’m starting to sound like a walking advertisement for products but I swear it’s just that I feel so enthusiastic when I find something great. Do you know my radiotherapy burns went from horrid, purple, infected and very very painful to remarkable healing almost overnight. I’ve been piling on the Moo Goo (also an Australian product) and it’s beginning to look better than my other skin! I told the plastic surgeon yesterday and he could hardly believe me when I said what a state I was in just 2 weeks ago. He said he would have cried if he saw it. They are very sensitive these plastic surgeons. BTW he told me I have not got enough stomach (still) to do a TRAM flap so he might have to use butt or thigh tissue. I am devastated. I’ll leave it to you to decide if I’m kidding or not.

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Another story about the shrinking egg.

This morning, after a one week break from treatment, I had the shrinking egg measured prior to my chemo session in the ‘Turban factory’. The Doctor was amazed and excited as she struggled to find it so that she could do the measurements! After only 3 treatments this is very fast shrinkage, especially considering it was a very aggressive tumour. Unfortunately they measure the width rather than the height. Prior to treatment, it was as high as a small egg and now it is a flat marble size. The width today measured as 2cm whereas it was 4cm before. The Dr found it a bit difficult to take the measurements as it is so flat now. I wonder where it will be at next time it’s measured in 4 weeks time. Having only had 3 chemo sessions, that’s pretty exciting yes? Thank God for fast response to prayer for someone who is impatient by nature. It certainly helps me to have faith, hope and a positive outlook.

10287830_10152147511869506_1343794248_oTaking part in the clinical trial means I will need to complete all of the treatment regardless of the outcome. I’m happy to do this because it contributes to research. Besides, it’s not only about shrinking tumours, it’s about killing the little beasties which are floating around in my body looking for a place to land.

The other exciting news is that my blood tests were ‘amazing’ according to the nurses. I heard them raving about them to themselves so I asked if it was my results they were discussing and they said ‘yes, your blood is incredible’. The doctor said I have  a good baseline because I am physically fit and my diet was good. Woo hoo!

So it’s looking like the Fun Run for the breast cancer research on Mother’s day is going ahead at this rate. Our team has raised over $1000 and individuals in our team have also raised money so that’s really awesome and I thank everyone who has supported the run.

You can contribute to our team fund raising here

I ALSO managed to persuade the doctor to give me permission to use the Peninsula Hot Springs. They require a written consent form before they will let me use them. Usually us chemo patients aren’t allowed in spas but the Hot Springs are fee flowing, rather than a hot puddle of germs and chlorine like the usual gym spas. I’m going away for the weekend with my 3 sisters soon so this will be part of our weekend. I’m so excited as it’s the 1st time ever I’ve spent a weekend just with my sisters!

Hairless happenings

I have totally spooked the poor waiter at Lower Deck Cafe with my ‘bald head and baseball cap’ appearance (after sport), wig variations and hat creations. They don’t like to ask but I see the question burning on their lips. What is their question though and who would ask it? I think I’ll keep them guessing.

10154535_10152134565794506_4193136607193693537_nThe same goes for my gym. I did my workout in my criminal cap and then did my ‘wig routine’ in the change rooms. I managed to do the headgear swap in 3.5 seconds while nobody was in there. I feel like a Mrs Doubtfire double with all my appendages. Reading glasses, hearing aides and wigs. It’s all a balancing act.

Hats are an issue with my hearing as they muffle the sound. If I wear hearing aides with a hat they squeal. I sound like a cot case don’t I? Actually I feel great! So glad we can get props for all our failing bits and pieces nowadays:)

I’ve taken to wearing wigs mostly but even then I am not terribly elegant about it…

Thank God for daughters

Last Saturday, while shopping at Eastland, my daughter said ‘MUM… you’re making very un-natural gestures with your wig’. You can always trust a daughter to tell you when you look ridiculous. I realised then that I have a habit of treating the wigs like a hat. I pat the top down if it feels like it’s sticking up, adjust the position of it on my head and pull the back down when it’s creeping up. Sometimes I itch my head under the wig and the arms of my sun glasses tend to go under the wig and around my ears instead of over. So what’s wrong with that?

I’m a class act really.

 

The story of the shrinking egg

Watch this space

Last week I told the doctor the tumour is shrinking and she said ‘it won’t be shrinking yet it’s too early’. Well watch this space doctor!! I can now lay on my stomach for the first time in months (the lump was very large and uncomfortable before) and the tumour is now back to golf ball size from the previous egg size.  It’s the benefit of breast cancer over some other types of cancer that I can SEE the tumour and watch it shrink.

Whether you believe it’s prayer, diet (cutting out sugar and carbs etc), chemo or a combination of everything… I’m claiming it!! So yes. Watch this space.

Taking advise from others

It’s always good to have helpful advise from people and I appreciate it very much but it’s also important that I research my game plan and feel positive about it. My health plan isn’t ‘random’, it’s been discussed with my doctors, clinical trial specialists and I’ve read many medical journals, books and discussed options with health experts.

Whether my choices are the best in other peoples eyes can’t be a focus for me. In order to feel ‘positive’ I need to be confident that it will work and it gives me a way to contribute to my health, along with prayer and support from friends.

So please don’t think I don’t appreciate what you suggest as a lot of it has been very helpful and I know it is well intended.

As for exercise. No, I’m not over doing it and yes it is the best thing to do when you are on chemo, according to research. I’m under no illusions as to how long I have to keep it up and how my white blood cells vanishing will make me tired. By nature I’m a fighter. I’m not going to sit on the couch and lose all of my energy by being inactive. Energy doesn’t ‘save’. It depletes when you don’t maintain your fitness.

Doctors used to advise people to rest as much as possible during treatment, but this has changed. We now know that too much rest results in loss of muscle strength and leaves you with low energy levels. Read more here

Here are the benefits of exercising during chemo:

-reduces side effects of the chemo
-reduces tiredness (fatigue)
-reduce stress and anxiety
-helps look after your bones
-helps look after your heart
-helps reduce your risk of getting a blood clot
-helps keep your weight healthy

If you’re on chemo and you don’t have an exercise routine, start very slowly. It’s not the time to get into hard core fitness now!It’s best to find an approach which suits you as it’s not for everyone. I’m 53 years old and had started a running routine about 5 months before I began chemo. I also go to pilates, body balance and workout in the gym. All of this I did prior to getting cancer so my body is used to it.

There are many hundreds of sites supporting exercise during fitness, both medical journals and personal cases. Of course it’s important not to over do it and to listen to your body when it needs rest.

Here is an example of someone who rode her bike to and from her chemotherapy sessions

Mothers day classic

We’ve started a Mothers day classic team called ‘The Wood Hood’ team. We’ve raised $135 so far Woo hoo! I hope I’ll feel up to it when the time comes but it’s given me a goal.

So if you can afford to support our team or join it, here is the link.

 

 

Facing another tiger

10151853_10152099808549506_1894207290_nAs you can see, cancer isn’t the first tiger I’ve had to face! Cancer seems to have paws and teeth greater than the Tiger in Thailand but I intend to strangle it instead of holding it tentatively.

Good news: We found a 4 HOUR CAR PARK AT MAROONDAH HOSPITAL today for my chemo session. Whoot! Plus… we were only there for 3.5 hours so we had 30 minutes to spare. I hope we donated those 30 minutes to somebody who needed them. The MOTH sat semi patiently through the chemo session, even though he didn’t have the ‘move the car’ breaks every 2 hours. What a man:)

I should be finished by February 2015.

Whee! February 2015. That’s providing I don’t have any low blood cells and need a break from chemo. I was advised today that I’ve actually got 26 more weeks of chemo to go before I have surgery and radiotherapy as it’s a 7 month chemo program. From this angle that seems like a long haul and I have to admit that it often feels overwhelming. I am usually very active with art projects, work, uni etc but right now it seems I am just concentrating on getting well. It’s pretty boring and self centred but I can’t seem to think outside this little world I’m in. It’s not that I have nothing to do, it’s more that I can’t find any focus. I have a listlessness that is foreign to me. I don’t think the ‘chemo fog’ in my brain helps! Each week I am in a completely different state of mind so perhaps it’s a phase. Hooray for moving to the next phase!

A massive week of shenanigans

Last week was pretty huge. The chemo side effects weren’t too bad, just lots of small things and general tiredness. Of course if you look at what happened during the week it’s any wonder I wasn’t exhausted…

  • I went to Daylesford on the weekend before chemo with my sister
  • My son crawled out unscathed from a 4WD accident where the car had flipped onto it’s roof (see last post) and gave me a heart attack
  • I started chemo!!
  • I kept up my exercise routine as per usual
  • I went to Ballarat overnight with Colin mid week
  • My daughter is going through a tough time right now. Us mothers feel our daughters pain with them.

It’s all happening at the Wood hood. I managed to walk 10+km at Ballarat, run 3.5 km around the athletics track and another 3km on a treadmill plus 3 gym/pilates classes and I’ve been out galavanting, socialising and entertaining visitors as well.

The doctor said today that I am on the highest end of the scale for my ability to exercise during chemo and that it will help to overcome the effects and the efficiency of the drug. That and all my little prayer warriors have certainly done the trick.

They removed one of the 3 anti-nausea drugs I was on because it is playing havoc with my digestive system and it seems I’m not getting nausea. Hooray for that! I came out of chemo today with flying colours and after a little nap I’m ready to tackle the world from my chemo foggy brain. Woo hoo!

Breast cancer post #7

A week feels like a year!

Treatment begins next Tuesday (April Fools day) but it feels like it’s been a year in the waiting. Mostly I’ve been feeling calm with the odd ‘meltdown’. It’s not necessary to always be positive. It’s about balance. It’s OK to have bad days as long as you have more good ones. So the one bad day I had is OK considering it’s been 11 weeks since I found the lump. It’s been a LONG wait for treatment.

This blog is helpful for me as far as explaining to people where I’m at without having to verbally tell me story frequently. I also hope it will be an inspiration to other sufferers and their families some day.

I’ve been asked lots of questions about the treatment and been given lots of helpful advise but sometimes people find it difficult to understand why I’m having chemo 1st and surgery 2nd. Others suggest that I try natural remedies or healing. As I’ll explain here… I only have one chance. So if I don’t take the most aggressive option it’s too late to change my mind. The tumour is large and has invaded breast tissue but I’m very glad that there is no evidence of it invading other places!

I’ve condensed my diagnosis and treatment story to help people to understand why I have chosen to go down the ‘clinical trial path’.

Facts about Triple Negative Breast Cancer (TNBC)

Most people are under the belief that there is only one type of breast cancer. In fact there are many. There are also different grades and different stages. so one treatment cannot be applied to all breast cancer types.

Typical breast cancer types: Seventy to 80% of all breast cancers are positive for estrogene (ER) or progesterone receptors (PgR). In contrast, the (HER2) protein overexpression and/or HER2 gene are overexpressed , in approximately 15–20%. Both of these cancer types respond to targeted treatment (either hormones or Herceptin).

The type I have: The remaining 10–15% of breast cancers is negative for all of the above cancer types. These are defined as triple negative breast cancer (TNBC).3

  • Among all the breast cancer subtypes, TNBC is associated with a worse prognosis. It has a characteristic recurrence pattern with the peak risk of recurrence and the majority of deaths occurring in the first 3 and 5 years after the initial treatment, respectively.
  • TNBC is less likely to be discovered on a mammogram than other types of breast cancer.
  • Anyone can get TNBC. However, it tends to strike younger women, women with BRCA1 mutations, and women of African, Latina, or Caribbean descent. Asian and non-Hispanic white women are less likely to develop TNBC, according to BreastCancer.org.

Read more: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3423721/
http://www.care2.com/greenliving/6-things-to-know-about-triple-negative-breast-cancer-infographic.html#ixzz2xEPTvB2C

 The clinical trial I’ll be taking part in

A small, early study (in 2010) found that 66% of locally advanced, triple-negative breast cancers treated before surgery with a combination of carboplatin (brand name: Paraplatin) and Taxotere (chemical name: docetaxel) had no living cancer cells in the tumour when it was removed.

In this study, 14 women diagnosed with locally advanced, triple-negative breast cancer were neoadjuvantly treated with a combination of two chemotherapy medicines: carboplatin and Taxotere. The women received six courses of the chemotherapy combination before surgery in three-week cycles. All of the women completed the entire chemotherapy course. After chemotherapy, the women had surgery to remove the breast cancer. A pathologist examined the removed tissue to see if there were signs of cancer cell activity.

Nine of the 14 women had a pathologic complete response to the chemotherapy given before surgery. This is notable because pathologic complete response to treatment usually indicates improved survival without the cancer growing.

http://www.breastcancer.org/research-news/20101005-3

The trial I’m taking part in is the phase before it is implemented. There are 600+ women on the trial across the world. United sisters!

 I’m no hero

Participating in a clinical trial feels good as it helps women in the future, but I’m no hero, it’s just that the outlook isn’t great otherwise. Without being a drama queen… this trial is my life line. I’m so blessed to be living in an age where this kind of treatment is possible.

I’m taking an array of supplements (carefully chosen by an qualified specialist) to boost my immunity, energy and kill cancer cells. I’m also on a strict diet plan. No sugar, low fat, plenty of fruit and veges and a good balance of more Omega 3 than Omega 6. It makes me feel like I’m doing something! Who knows if it makes a difference but it feels good to be doing something active.

Roll on Tuesday. I’m getting over it!

I’m going away with one of my three sisters on the weekend to relax in the lap of luxury. YAY!

Breast cancer post #5- bald is beautiful?

eabca4f446b033e81f4508e10378242e

There is no doubt that having breast cancer makes me question what’s important. I’ve always lived life to the fullest, perhaps because both of my parents died young (biological father- 23 and mother- 54). Perhaps it’s just my personality. Having cancer takes my focus a step further however. It is probably a phase I’m going through but I have little interest in the usual life pleasures right now. I’m finding it more important to connect with people. You should see my diary!

Are split ends important? A broken finger nail? Work? Home decorations? Shopping? Well no. I’m sure it’s a temporary state of mind. In saying that, I have to say yes… losing my hair does mean something. Call me vain but I’m not sure that it’s all about vanity.

It’s very confronting to go to a wig shop and try on wigs (which made me look like a supermodel I have to say LOL). It’s even worse to have your hair tucked away and a ‘chemo hat’ planted on your head. I didn’t look like me. I looked like a cancer patient. I know hair isn’t everything it’s just on the outside but it confronted me with my illness in a very powerful way. It’s just as well the lovely lady in the shop was prattling away in my ear and distracting me from the sight.

This week I had my hair chopped to shoulder length. Perhaps I’ll get 1cm cut every day for the next 3 weeks! In the meantime, I’m designing my own hats so watch this space. I’ve never been a hat person (they don’t stay on my head) so that will be a new fashion statement. Sophie and I went looking at hats (and other stuff) last night. I didn’t buy any but tried on a few… You like?

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Breast cancer post #4

Woo hoo I’ve finally found some information on the clinical trial I’ll be taking part in that isn’t written in gobbleldy gook!

If you’re interested, have a read. It’s actually quite ground breaking treatment for a type of cancer which previously had little hope. The article is referring to the ‘guinea pig’ phase, which is different to what I am doing as I am on a trial phase. The trial phase is the last step before they implement this strategy as a standard treatment for people with Triple Negative Breast Cancer (TNBC). http://www.breastcancer.org/research-news/20101005-3

This article on Triple Negative breast cancer is also informative but written in plain speak: http://www.breastcancer.org/symptoms/diagnosis/trip_neg/behavior

I begin treatment on Tuesday the April 1st (April Fools day), providing all the tests are done and the paperwork sorted in Italy (!) by then. In the meantime I’ll be doing more tests. Yay! Not. So I will be put into a randomized group and get one of two Nab-paclitaxel type drugs. So group A uses one Nab-paclitaxel drug and group B uses the other. I will know which group I’m in but I can’t choose. Then after that treatment I will begin standard chemo treatment and then surgery and radio therapy.

Sounds like a plan?

Keeping positive

People keep telling me to keep positive but how am I supposed to do that when I have Triple Negative breast cancer? That means I need to be triple positive just to be neutral so that’s a lot to ask LOL.

Actually… I am feeling ridiculously positive. Not that I’m in denial, it’s just that I have absolutely no doubt I’m going to kick it. That could be the power of prayer and being surrounded by such amazing friends and family and whatever other reasons we can come up with but it just isn’t in my radar not to kick it.

My Mum was my age when she got cancer (53) and died at 54 a few months later, so that’s a bit scary but I will not let that take over me.

It might be called Triple Negative but I’m feeling triple positive.

Screenshot 19:03:14 9:51 PM-2

I finished this artwork yesterday. It was started in the middle of the night about 5 days ago and reflected how I felt at the time. The dead of night does that to you. Although it isn’t a reflection of where I’m at right now, it does highlight that first couple of days where I wanted to curl up in a ball. When I look at it now I remember the feeling but it isn’t something I can identify with (today).

I’m sure that as I go along I’ll meet an array of different feelings. Maybe my positive hype will wane a little when I’m in the middle of Winter (urgh), chemo and the long haul is still ahead.

My brain is already in a kind of fog. It feels like the world is rushing by me and I’m here in my foggy place. To top it off I have to come off HRT which is a bit nasty and bound to make the fog worse. Has anyone got an anti fog machine?

Todays funny MOTH story

Sorry MOTH… but you do keep me (and everyone) entertained. As a typical MFB firefighter, he is used to getting a ribbing. It’s all part of the culture. So I’m sure he can take it and he knows I love him dearly. Now on with the story…

You know he doesn’t like sitting still right? Well hospital appointments are our new worst nightmare. I’m about to make him an activity pack for our waiting times. Colouring books, pencils, snacks and Valium. Oops… sorry I didn’t mean Valium that just slipped in there.

This week, he was sitting on a bench seat in the radiology waiting room and a woman came up to him and said ‘could you please sit still as your jiggling is making it hard for me to send a text message’. 

Some people just need a perfect world LOL.