triple negative breast cancer

Relay for life

It’s been a while and I’ve neglected the blog a little. To begin with, I’ve had a nasty hip problem keeping me awake at night. I don’t want to go on about aches and pains but I understand how concerning it is when a ‘new pain’ starts up and all the tests have to begin again. Over the past 3 weeks I’ve had bone scans, CT scans and many trips to the doctors. Monday I’m off to have an ultrasound. My GP is very sure that the left hip is bursitis and that is treatable with a shot of steroids. YAY! I’ve got bursitis! How exciting. Better than the alternative.

However… I also have a 4mm ‘spot’ on my right hip. This isn’t concerning me but I have to have another CT scan at the end of May to see if it’s grown. I can’t have an MRI because I have metal in the breast tissue expander. So on the 26th of May I find out the results. THIS IS THE DAY WE FLY TO EUROPE FOR 8 WEEKS. Doh! Seriously, I am not going to worry about every little ache and pain… or spot for the next 10 years.

Relay for life

Tonight I’m sharing my story to 2000ish people at the Greensborough ‘Relay for life’. It’s my 2nd public speaking engagement and not the last as I have another booking in May. My story seems so boring and not unusual as cancer touches so many. Hopefully I will be able to inspire people and help them to see that the big ‘C’ word can be life changing in a positive way.

I’ll upload my speil for you to read some day!

Strange Christmas gifts for me

All I want for Christmas is 3 tattoos and a breast inflation. Apparently that’s what I’m getting.

Yesterday I had an appointment with my new Radiotherapy specialist at Ringwood Private. He was more rapid firing than my Dr at Maroondah but seemed very thorough and in a rush to commence the program. I begin radiotherapy on the 29th of December. I was hoping to have a break and begin late January but at least I will get through the treatment sooner this way and spend some time recovering before we go to Europe in May.

On Christmas Eve I have my last ‘breast inflation’ appointment at Maroondah where Dr Grim (not his real name) will advance on me with the largest syringe on the Earth and inject 75ml into the tissue expander. That will be my last one yay! Later in the day I go to Ringwood Private to have 3 tattoos and a CT scan to prepare for the radiotherapy. I hope the tattoos are something cute. I rather fancy an owl or something. So Christmas Eve will be spent in hospitals and not preparing for Christmas day at my place!! Oops. At least I’ll have tattoos.

While they are there I could get this tattoo on the back of my head. You like? My hair is still falling out so I’m not expecting long locks for Christmas at this stage.

The doctor decided that I need 33 treatments rather than the original 25 as I have had a big gap between surgery and radiotherapy and I am high risk of the cancer spreading to the chest cavity. So that’s every day except weekends for 6 weeks or so. Ho hum. What’s a few more weeks in the scheme of things?

Oncology nurses are angels

I can’t thank the staff in the breast clinic and the oncology nurses at Maroondah enough. Having chemotherapy is frightening for many people but they made something which can be fraught with fear and anxiety, a supportive and caring place to be. They are always concerned and kind but they are also fun and friendly. They go over and above their call of duty and run their little legs off all day supporting people who can be at many stages of grief or anxiety.

I’ve heard many cancer patients find it difficult to move from this supportive environment to ‘being alone’ and I can understand why.  Having had chemo for 8-9 months now they have become a part of the family. The staff walking the journey at your side is really important and stepping away from that can be a little daunting for the patient and their partner.

To top it off, the MOTH has teased the daylights out of them for the past 8 months. Perhaps he will finance their self esteem building sessions.

Feeling unravelled

Screenshot 17:12:2014 8:53 pm

Please don’t ask me what goes on in my brain. Col says my brain scares him. This week I did a series of 4 greyhounds who are looking rather ‘unravelled’. I sold 3 of them before they were finished. I can identify with them in that I am tired, I have various aches and pains but I’m still running towards the finish line. I am not skinny though!!! Stupid breast cancer chemo all has ‘weight gain’ as a side effect. Not to mention all the eating I’ve been doing but let’s blame the chemo.

Actually I think I am less tired but with all the Christmas celebrations I don’t feel it. This morning I actually did some RUNNING on the athletics track. It wasn’t much but enough to start getting my fitness back. Hopefully I’ll be able to get out of bed tomorrow without the resulting sore muscles.

I’ve been asked many times where people can see my artwork. At the risk of seeming self promotional…

Facebook page https://www.facebook.com/jennywoodart

Website http://jennywoodart.com/

It’s just a flesh wound

My guest blogger seems to have upstaged me so I’m taking over again! Thanks Sophie for your lovely contribution I love you heaps.

Today is ‘verdict day’ so it’s an odd day to update the blog but it’s a good time to share my past week and clear my mind in doing so.

T10636229_10152421456294506_7077982170405306639_nhis beast of a cancer is determined to make a fashion model out of me. Now that I am hairless, one breasted and having to carry two drainage tubes around in a floral bag the picture is perfect.  I had a few additions in hospital such as the long white socks and the bandage over the cannula. Apparently it’s all for the good.

If I could be so vain as to say my best attributes have gone, I would say it but perhaps it’s that my vices have been stripped from me and that can be a good thing. It forces me to live life for the right reasons. Besides, who needs a breast when it’s trying to kill you? Who needs hair when you have to keep washing it and cutting it. Apparently it will grow back. I already have stumpy little eye lashes and eyebrows growing.

images-1The surgery wasn’t so bad. I took panadol and off I went, showering myself the morning after surgery and feeling pretty good overall. My underarm is giving me the most grief as it has a strange crater in it. I seem to have a lot of weird sensations, including pain, under there but I guess it will subside.  I also have numbness, intermittent coldness and a feeling that a mouse is running up the inside of my arm. Maybe I should remove the cheese from my armpit (mouse… cheese… never mind).

I’m so pleased that I kept up my exercise as I am still feeling so very fit and have very little fatigue. I can’t do any for 4 weeks now so that’s disappointing but at least I have a good starting point.

They put 100 ml of saline into the expander, which isn’t anything to write home about but in 2 weeks time they will add more and keep doing that until I am ‘balanced’.  Sorry… no photos. I draw the line there and I’m sure you’re pleased about that. Sophie couldn’t wait to see the war zone but not everyone has her warped curiosity.

I had a huge room of my own in the hospital for 5 nights and the nurses were calling me the queen. Given that my arm exercises include a ‘Queen like wave’ I showed them just how right they were. Although they were all lovely and I was very well treated (apart from the food!!!) I am very happy to be at home. There’s no place like home.

I would have been home after 2 days but the drainage from the wounds was (and still is) flowing a little too much. Hopefully the drainage tubes will come out soon as I am not fond of dragging them around with me. Yesterday was my dear MOTH’s birthday and after waiting all day for the district nurse to arrive we went to the movies and out to dinner. I had my drainage tubes in a bag under my coat, my wig and makeup back on and off we went. A tiring but fun day to celebrate  his birthday and the ignorance which could be called bliss. Today is ‘verdict day’.

 Verdict day

The surgeons and doctors had a forum to discuss my ‘special case’ yesterday. They have told me on a regular basis that I am ‘unusual’. Given that the 1st tumour shrunk with the first chemo (Paclitaxol ) but the 2nd tumour grew on it. If, in fact, it WAS a tumour. Both tumours grew on the 2nd chemo (AC). I’ve no idea when the lymph glands became malignant or how many (yet). I don’t know if there is any spread or if I need more chemo and radiotherapy. Surely 6 months of chemo is enough but if it’s necessary I’ll be guided by them. I’ve no idea how they will decide which type of chemo to give me.

So today is the day the doctors will decide how to continue with treatment, given the limited options of Triple Negative Breast cancer and this will be discussed with Colin and I this afternoon. I don’t know if I should hope for chemo and radiotherapy or not. Part of me just wants to get on with my life and the other part says ‘give me what I need to get rid of this thing’. I have faith in the surgeons, although mine is away this week so I will see a registrar.

Watch this space…

Last but not least

A big thank you to everyone for your prayers, well wishes, cards, flowers etc. We both feel really blessed to have such wonderful friends and family surrounding us with love and support. I know I haven’t personally thanked people for the cards etc but I really have appreciated your sentiments. It boosts me no end. I personally want to give a big hug to the MOTH and my 3 kids for being such troupers. Shan has been in NY but has been phoning and messaging me daily. I can’t wait to see him!

 

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!

Chemo #1 over… 24 weeks to go!

Screenshot 2:04:14 7:54 AMHooray I got through the first chemo session with no adverse reactions so I’m good to go for another 24 weeks! I’ve been randomly selected into the ‘comparative’ group of the clinical trial, which means I’ll be on Paclitaxel (taxol ®)  rather than the new drug Abraxane. Even though I missed out on the Abraxane, the use of Paclitaxel prior to surgery is still a new concept. It’s a highly toxic bomb blast so that ought to do the trick. Unfortunately it is necessary for me to also have cortisone, which wouldn’t have been necessary with the Abraxane drug. Abraxane is also safer, allows higher dosing with shorter infusion duration, and produces higher tumour drug concentration.

No matter! There has been some good success with Abraxane and it’s going to work. I have 16 weekly shots of that and then 8 of the ‘usual’ chemo that everyone else has. THEN surgery and THEN radio therapy. Whew. There’s a long road ahead.

A big thank-you!

I’ve had literally hundreds of emails, Instagram, Facebook, Twitter and blog messages and I’m so grateful to have you all praying and/or cheering me along. It really makes a huge difference and I don’t want you to think I don’t appreciate you if I don’t respond to the comments. Thank God I’ve been feeling calm and balanced with a high level of hope and faith that all will be well but I have you all to thank for much of that.

News flash: The MOTH (Man Of The House) sat for 6 hours

We were at Maroondah for 6 hours and he survived the day without going stir crazy!! Hoorah for the MOTH. He is such a tower of strength right now and I don’t know how I would battle along without him by my side.

The 6 hours wasn’t all waiting so that sounds way more miraculous than it really is. He had the mandatory ‘moving of the car to another 2 hour spot’ and we had several appointments before the actual chemo began. The MOTH also exited very quickly when they put the IV into my arm. Big Brave Fireman. It gave all the nurses and other chemo patients a laugh.

The team at the chemo clinic are lovely and very informative. I was sitting opposite a Swinburne staff member who talked her little head off the whole time. WHAT IS IT WITH SWINBURNE and breast cancer??? There are so many of us with it right now or had it recently it’s ridiculous.  She was on her last treatment so that is great for her and I hope she bounces back from it soon.

So… the MOTH was ‘out talked’ by this person sitting opposite us. Miracle! He found someone who could talk under water more than him LOL.

Toilet cleaning duty

Who would have ever thunk it? The LIST of do’s and don’ts with chemo is scary enough but toilet cleaning? Yeesh. Apparently I have to double flush the loo with the lid down and disinfect the toilet bowl every time I use it so that nobody gets infected by chemo drugs. If I’d known I’d have to clean the loo all day I’D HAVE NEVER AGREED TO IT!!! Yeesh.

As well as that, I am not to:

  • go shopping in crowded shops (almost impossible)
  • go to gym when it’s crowded (almost impossible)
  • go in spas (semi difficult)

I have to:

  • take my temperature every morning and call an ambulance if it goes over 38
  • rinse my mouth with salt water 4 times a day
  • Double bag vomit
  • Stay away from people with bugs (almost impossible)

… the list is a mile long and I’m sure you already know it. I’m sure I’ll figure it all out. Hopefully my white cell count won’t go down too much and I can be my usual wild thing self.

Guess what I woke up to yesterday!

So the drama is all happening in the Wood Hood. I was laying in bed yesterday, my big 1st chemo day, thinking ‘it’s strange that I didn’t hear how the boys went on their 4WD trip’. I opened my iPad and saw this photo!!!

Screenshot 2:04:14 7:54 AM 2

My two sons went on their first 4WD trip with a bunch of mates and their girlfriend and wife. Blake was in the passenger seat of this one. Both he and the driver (who I have known since he was 12 and is a good friend of my 30yo son) got out unscathed. It’s actually very typical of Blake to laugh in the face of danger. He is my super hero. and lands on his feet at the worse possible scenarios of which most of us would never get ourselves into in the first place.

I need some of that right now!!!

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 #6- One week to chemo!

Screenshot 18:03:14 2:11 PMYou don’t know what to say to me. I don’t know what to say to you. Check mate.  It’s all rather awkward. I’m so blessed to have a sense of humour which I put into action at those silent moments when people struggle to find their words. If they don’t think I’m funny at least I amuse myself.

Yesterday I had the ultimate awkward experience. A guy, who I have met only twice (briefly) totally lost it. I thought he knew I had cancer but soon realised he didn’t. When I told him he became overwrought and took me in his arms and began sobbing into my hair.

It was then I got a whiff of alcohol on his breath.

I attempted to remove him from my personal space but it just didn’t work. My daughter, daughter in law and son’s girlfriend all skulked away (laughing). I was left rubbing his back and telling him it was ok. ‘Have you had a bad experience with cancer?’ I asked? ‘It’s not about ME, it’s about YOU’ he wailed.

OK… so it went on for 5 minutes and I managed to peel myself off him and say ‘it’s time for me to go now’. I walked briskly, with him slung around my shoulders, to where the girls were. The guy was saying ‘You’re poor daughter she must be so upset’ and then hugging and wailing again. I looked up to see  Sophie trying to hide her laughter behind her wallet. The ‘very upset daughter’ and the other 2 girls escaped up the street laughing and left me there. Yeesh. You know who your friends are.

Eventually he told me he loved me and kissed me on the cheek and I bolted up the street like lightening and jumped into the car. It caused hysterical laughter all the way home so it was all worth it… almost.

SO… now I’m equipped to handle any reaction. Bring it on!

Medical news

I had all my tests today and the results will all be analysed and sent to central base. Then my name will be sent to Italy and I will be ‘randomised’ into a group. Then I will be totally random. Yay!

So all going well… I begin chemo next Tuesday, April 1st. Yes April fools day. I’m more than ready for it as it feels like nothing much is happening right now. I’m still feeling calm and positive but have a need to take action as well.

IMG_1513I’ve begun a diet as well as taking supplements which were suggested to me by a pharmacist who went to a conference where the author of ‘Five to thrive’ was speaking. My friend works at the pharmacy and the pharmacist knew about me so she wrote a list especially for me.

So as well as the cancer killing diet, I’m all plumped up with these little babies! It makes me feel like I’m doing something active, other than drinking coffee with friends.

Hairy head

I ‘ve started making hats with matching scarfs out of stretch fabric. I can get a hat and scarf out of 50cm of fabric. Today I cut up an old poncho and made a hat and scarf from it. This will catch on in Paris for sure. My life has been reduced to domestic bliss and hat happiness. I can cook up a mean broccoli sprout in the thermomix.

I’m so blessed to have the chemo in Winter where wearing beanies etc is OK and my head won’t get too hot wearing a wig. I also have some clever family doing some knitting and I can’t wait to see what they come up with.

This morning I went armed with Sophie to the wig shop in Ringwood and bought two synthetic ones from the Rachel Welsh range. The MOTH always fancied Rachel so that might add some spark to the marriage! The wigs are surprisingly realistic and I’m almost looking forward to the low maintenance hairdo.

My art expo

SInce Paul has been so lovely and extended my exhibition dates, please go and check out his new business. Have a lovely coffee and lunch at Forest Edge Stone in Kallista, they have extended my art exhibition until May 1st.  Ignore the ‘April the 10th’ end date on the website: http://www.forestedgestone.com.au/