Details on the chemotherapy

I thought that some of you may be interested in the more technical details of Ali's treatment - but then again many of you may not.

I know I didn't know much at all about chemotherapy right up until last week. I still don't know much but I know a lot more than I did then. It seemed to be one of those things that would be interesting to learn more about if I had the time or could find the right person to ask. Anyway, here goes my version of how it all fits together.

How it works
Chemotherapy is considered a body-wide (systemic) treatment, it travels through the whole body. In Ali's case, this means the chemo drugs will work on the cancer in the breast and the liver.

The chemo targets cells that rapidly divide, such as cancer cells. Part of the problem here is that there are three other main areas in our bodies where there are rapidly dividing cells. The chemo can damage or kill cells in each of these areas resulting in side effects.

Blood
This is where the immuno-deficiencies may come into play. White blood cells have a life span of 13-20 days (red cells can go up to 120 days). By switching off production through chemo, the body can experience low counts of white blood cells which reduces our ability to fight infection. Any signs of infection will get us a fast ticket through the emergency room.

Hair
For Ali, her hair will fall out. I mentioned in an earlier post that she's looking at wigs already. She reckons they only cost about 2-3 hair cuts and argues that I'm getting a good deal as the wig should last much longer than that. She also tells me that she tried a blonde one on but it just didn't suit her complexion (there goes that idea!).

The hair should grow back once treatment stops.

Gastrointestinal tract
This can play games all through from the mouth right down to the other end. Rather than dig into the details on this, if you're interested, it's probably best you look this up yourself.

The Drugs
The two operative drugs that will be prescribed to Alison are:

• Doxorubicin
• Cyclophosphamide

Duxorubicin
This drug works to stop the process of duplication through affecting the DNA. We're told that the liquid that is injected is red in colour so it will be quite interesting to see. Also, I read somewhere that it costs nearly $1.1m per kg to make (not sure how true or recent this bit is).

See below for the chemical structure (just a little something I threw together).

Cyclophosphamide
This one scared me at first, I thought the doctor and nurse both said psychophosphamide. I didn't think Ali needed any 'psycho' drugs and in my mind there where all sorts of images of Ali on the rampage. Luckily, this is not the case and I'm OK with them using cyclophosphamide.

This drug works to slow the growth of the cancer and interestingly, is carcinogenic itself. It is manually injected rather than relying on a gravity fed drip feed or automated pump. The reason for this is that if the canula slips out of the vein, the drug can cause necrosis of the surrounding tissue (the nurse we were speaking to assured us that he had seen this only twice in well over 20 years of experience).

See below for the chemical structure.


The Process
Ali will turn up in the morning and been seen by her medical oncologist who will check her general health and the blood test results (most likely taken the Friday before), with a particular eye on white blood cell count. If all's good, the chemo proceeds.

This will begin by the nurse inserting a canula into her arm which will be used for administering all the drugs. First off the rank will be anti-nausea drugs. Two types of anti-nausea are provided through the drip feed. I'm not so sure on which ones are used but I think it is Ondansetron and Palonosetron. These work in various ways to trick the mind and body into believing that the chemo drugs are not harmful. This part takes about 30 min.

Next, the chemo drugs above will be administered. These will take probably another hour and a half to work through. So all up, Ali should be at the clinic for probably three hours.

When released, Ali will be sent home with a small cocktail kit of pills to help manage any further headaches or nausea.

It was interesting to hear that they use different types of anti-nausea drugs after 1-2 days as it will be different reactions causing the nausea once this period has passed.

Post treatment
Ali is most likely to be feeling nauseas and tired during that first week. Her white cell blood counts will probably be low during the latter part of the second week to the middle of the third week, and thus be most susceptible to infections during that stage.

Hair will probably go close to the time when she is due to go back for her second treatment.

After three weeks, we start all over again. It does sound like we're in for the full six-cycle treatment.


Hopefully this has been interesting, educational and useful to you all. At the very least, it should give you some idea of what will happen with the chemo and a very basic, but hopefully correct, understanding of what goes on.

How it all actually affects Alison, given that every person has their own tolerances and different reactions, is yet to be seen.

Some photos

Aha! At last I found a photo.

Ali is very sly and usually hides whenever a camera is around or if I do manage to catch her, she's got her eyes closed or a nasty scowl on her face (if you've ever been on the end of one of Ali's scowls, you'll understand why I won't be posting any of those shots).


She has promised that she'll smile for some new pics before the hair goes so keep an eye out.

In fact, while I'm at it, here is another of her with the kids, busy at one of her favourite activities, hehe. (She'll probably tear a limb off me for this but I don't think she knows how to edit the posts)

Induction session at the oncology treatment centre

We had our induction at the Zita Mary today. That is the oncology treatment centre at Calvary Hospital. It was all pretty uneventful really. The reading materials that we had been given earlier, combined with the consultation with the medical oncologist on Wednesday, had already told us pretty much everything we learnt today.

Still, it was good to see the place and meet some of the people that will be there. The staff were reassuring and stressed that chemotherapy isn't always as bad as the stories that go around. In fact, they said that even over the past five years there have been some significant advancements in management of the side effects and the drugs that are used. Most of the side effects can be treated, so long as we tell them what's going on. Everyone's response is different.

The other thing that happened today was we got the results from Ali's bone scan. It looks to be all clear although there was a small spot of interest in her vertebrae but the report stated it was remote that this could be a metastasis. It's more likely minor damage caused by earlier scoliosis. We'll take the scans to show the medical oncologist (whose name also happens to be Alison) on Monday just in case she wants to look at them.

For those that heard about the, ahem...let's call them frank discussions, that I had been having with our health insurer, they came through and confirmed that they would have covered costs for the mastectomy and reconstruction if we had gone through with it. It seemed that when pushed, they were prepared to accept that the breast reconstruction was not 'cosmetic' and that the fact we increased the level of our cover in April this year was an independent decision, not one based on some secret knowledge of a prior condition.

Some lessons we've learned from this:

• if you think you are right, be prepared to push back
• if you are not sure, find out somehow but don't just rely on the insurers
• where you have something serious to discuss and possibly contentious, talk to real live people, not mystery voices on the telephone hotlines (it's much easier to reach over the counter and grab someone in person)

Anyway, that's about it for today. I think Ali must be feeling OK as she's starting to nag at me for writing such long posts. The next big step will be on Monday with the first chemo treatment.

Bye for now and stay posted for more as we go.

Comments
Just a couple of quick things before I go... thanks for all the comments. Ali enjoys reading them all.

If anyone feels they are having problems with posting because their comments don't immediately show up in the blog, please be aware that all comments are moderated (by me). I've set it up this way because this is an open blog and you never know who or what may be posted.

The plan is that I'll only touch stuff that is clearly out of context or inappropriate, or where someone is posting duplicate comments for no apparent reason.

Also, if you want to leave a comment on a specific post, then simply scroll to the bottom of that post (not to the bottom of the page) and click on the small 'comments' hyperlink.

Meeting with the medical oncologist

Hi All

As we said earlier, we had the meeting with the medical oncologist this morning.

How did we go? Well, overall the news wasn't good.

The short version is that the doctors cannot cure the cancer, they can only treat it and try to slow down its progress. The long version follows...

The situation
For a breast cancer to metastasize to the liver this quickly is very uncommon. The focus is now on treating the cancer in her liver as the priority. Alison has several masses in her liver and the doctor showed these to us on the CT scan today. The size and location of the masses mean that surgery is not a viable option.

Another problem is that it is unlikely that the liver is the only place with cancer cells. At this stage there have been no signs of cancer elsewhere but it is likely that there are microscopic cells scattered in other parts of her body. It is most likely to show up in bones and lungs, and somewhat less likely in the brain. Ali had a bone scan this afternoon so we should know by some time tomorrow whether there is any cancer in her bones.

We are however, lucky that we've had diligent doctors. As it is so unlikely for breast cancers to metastasize to the liver, many doctors wouldn't notice or be looking there for any signs of further cancer. That we have caught it now rather than later is a small positive factor in our favour.

Next steps
Ali will start her chemotherapy at Calvary Hospital next Monday. For those who don't know where this is, it's only about a five minute drive from our house so, chalk another one up for small positives.

We have an appointment with the treatment centre tomorrow for an induction/learning session where they will tell us more about the treatment and more importantly, how it will affect Ali in the coming months.

What we do know from talking to the doctor this morning:

• treatments are administered intravenously
• they will take several hours for each treatment
• Ali is likely to feel nauseous for a few days afterwards, although this can be managed by the oncologist
• Ali may feel nauseous for longer
• Ali is likely to be tired
• the treatment will cause her hair to fall out (she's been looking at wigs earlier today)
  

Treatments at this stage will occur every three weeks, running for somewhere between two and six cycles. The timing will depend on how the cancer responds to the drugs. The longer they go, the more toxic they are to Ali's body, that's why they stop after six cycles.

After the treatment, the oncologist will consider whether hormone treatment is appropriate and either administer or not at that time. The cancer cells have shown up as positive to oestrogen and progesterone so there is a chance they will respond well to hormone treatment. The reason we cannot do this instead of the chemo, is that hormone treatment would take a couple of months before showing signs of whether it was working or not and the doctor did not want to waste that much time. We need to hit it with something a lot harder.

Throughout the treatment, the doctor will monitor Ali and she will have blood tests done before each cycle (this may time well with Harrison's blood test - the two of them are going for a joint pathology session tomorrow, Harrison said that mum can go first 'cause he thinks she's a bit of a scaredy cat).

At the end of the treatment, they will need to continue monitoring Ali. When the cancer shows signs of spreading/growing, more chemo will be needed.

The BIG question
How long? We don't know.

Excluding the cancer, Ali is strong and healthy. The doctor says she could have years ahead of her. Certainly, we're looking to set some new records here. I think she's one in a billion so that must put the odds in her favour at least a little.

It's all going to depend on how effective the chemo is and how aggressive the cancer is going to be. And we won't know the answer to that for a couple of months yet.

Keep your fingers crossed.

Ali's email

Hey all - it's me again. As promised, here is the email from Ali.

Hello there

Apologies for the generic email but it’s the easiest way to contact everyone at the moment. Some of you know more than others so I’ll give a quick rundown on what’s happened so far.

Most of you are aware that after only being back at work for 2 weeks after having 7 weeks off following my hysterectomy, I found a tiny lump in my left breast. Everybody (including the doctors and us) were saying how lucky I was to have found it so soon. An ultrasound indicated that it wasn’t anything to be concerned about, however the FNA (fine needle aspirate for you ‘non lab’ people) indicated it was malignant, which was confirmed by a core biopsy a couple of days later. The lump was high grade however due to the fact that it was the only lump visible on ultrasound, and it appeared to be contained within the duct, the plan at that stage was a lumpectomy (removing just the lump) followed up by some radiation therapy. I had an MRI before the surgery which showed that it may be more widespread but still within the tissue so the plan remained the same. The MRI also showed some lesions on my liver which were thought to be haemangiomas (birth marks), these would be followed up after my other treatment as they’re nothing to worry about.

I had the surgery on 23 June and all went well, I even managed to go home on the same day, although the surgeon found a couple of other small lumps during the surgery which he removed. Friday evening of the following week we went back to see Dr Barry (my awesome surgeon) who had the histo results back from the surgery (thanks Ange for all of your late night babysitting). The news wasn’t great and the cancer had spread. The plan now was for a mastectomy (plus reconstruction) and chemotherapy, the surgery was scheduled for 22 July, the chemo would start about 3 weeks after the surgery. During the school holidays there were several tests to get done, mostly so that I’d be ready to go after the surgery with ‘baselines’ for the oncologist. One of the tests was a CT scan which I had last week (Tues I think), which showed lesions on my liver. The doctors were saying that it would be very unusual for it to have spread there so quickly and thought it would probably turn out to be the haemangiomas, but required follow up sooner rather than later. Friday last week I had a FNA of my liver, not pleasant (think very long needles stuck in your liver and jiggled around). They didn’t say anything at the time of collection but the way the radiologist held my hands at the end and said good luck made me think things weren’t great. So after a very long and anxious wait over the weekend, this afternoon my surgeon called me (from his holiday destination somewhere) with the results, which show that it has in fact spread to my liver. Apparently I’m only his 4^th patient that this has happened to out of roughly 4000 breast cancer patients that he’s treated. Andrew always said I was special…..

So the plan from here is to put the surgery on hold or maybe cancelled altogether and just get started on the chemo ASAP. I have an appointment with the newest doctor to join my team, the oncologist, on Wednesday so will know more then, her name is Alison so I figure that’s a good sign. I also have a bone scan planned for Wed which will hopefully be clear.

As you can imagine it is pretty stressful at the moment and although we talk to the kids about what is happening, we want to try and keep things as normal as possible. There are many people that have offered to come and help out and stay with us but it’s actually more stressful having people to stay. We do appreciate the offers but at this stage it’s easier if we just muddle along as usual. The offers of picking kids up from school etc have been fantastic and it’s been really useful, it helped make my recovery after the lumpectomy much easier. I don’t know how I’m going to react to the chemo but hopefully I’ll still be more than capable of dropping the kids at school and picking them up. We’ve also had the offer of a cooking roster (you know who you are!) which will be great if I get sick, I don’t want the pikelets to live off pizza and McDonalds. It’s also going to be pretty important for me to eat well. In saying that, I am having a couple of glasses of wine tonight, only to help me sleep better of course. I figure my liver is buggered anyway so it can’t hurt too much. Don’t panic, tomorrow I start on my eating lots of veges and not drinking any alcohol regime.

Please feel free to email or text. I know it sounds terrible but I’m mostly letting phone calls go to the answering machine at the moment, depending on how I’m feeling. Sometimes the distraction of talking to people about normal day to day things is a good but at other times it drives me nuts and I don’t feel like being friendly to anyone or hearing about anything. I know I need to keep thinking positively which I have been doing up until now. I think I’ll probably have a few bad days now and then but hopefully the oncologist will give me a bit of hope and a reason to think positively once again.

People have asked if I mind them telling other people about what’s going on (work and school mainly). I certainly don’t mind and in a way I hope that by hearing my story if anyone (or their partner) finds a lump, they don’t just ignore it and get it followed up with and FNA not just an ultrasound.

Andrew has been absolutely amazing and I don’t know what I’d do without him, he knows what to say and more importantly what not to say. Perhaps the psychology degree is coming in handy after all. He recently got a promotion at work which means lots of extra pressure so in terms of timing I could have done better. So far he’s managing to keep it all together at both ends so hopefully once things settle down here and we have a plan he can start to concentrate on work a bit more. I feel pretty guilty dragging him away from the office so much over the last month. He’s going to set up a blog for those of you who are interested in keeping up to date with things, as this will probably be the easiest way for everyone to know what’s happening.

For those of you that I had arranged to catch up with this week (lunches, coffees, play times with kids etc), I’ll have to take a rain check and make it another time as I just need to sort out a few things over the next week.

Take care for now.

Ali

Start of the Blog

Hi All - you've probably found this place because of Alison's email. If not, then I intend to post the text from that email sometime soon so those of you that have joined in late or missed out can catch up on this history of this journey.

If you are viewing this blog, then it is probably because you know and care about Alison, and that's a good thing because she is definitely worth it. We've got a long and difficult road ahead of us at the moment and we're happy to have your help and thoughts along the way. However, to save us from repeating ourselves 30 times a day with updates etc., we thought that a blog would be a good way to keep everyone up to date on the latest news.

Now I know that the blog is only as good as the information that goes into it so I will try to keep it all up to date. I really will.

But...I make no promises. So, you have been warned.

Also a warning to all little kiddies that may be reading. I have no intention of holding back on this blog so if I'm having a bad day, you may well hear about it in full 7.1 Dolby, colour and 3D. Although I'm sure that those of you who know me realise that this will be done in context, be fully justified and have appropriate impact.

So - where are we at????

We know:

• Ali has been diagnosed with cancer in her left breast
• this is a high grade (III) cancer
• the cancer has appeared to have metastasized ('Google' it if you don't know) to her liver
• this is considered a bad thing

What next???
We have an appointment with the oncologist on Wednesday morning to find out more. That evening is likely to be the date of the next update because really, nothing much is going to happen between now and then.

What can you do???
Hard to say really. I don't want to sound lame but there is not much to do at this point. Don't worry, we will be pushing doctors etc. to their limit (insurance company already dislikes me, doctors' surgeries quiver when they see my number come up on their phones and I'm on first name basis with the hospital so believe me, we will push hard).

What's good - normal life stuff, talking about the kids, what's going on, yes you're interested in how things are but life in general still has to happen
What's not so good - "hang in there", "stay strong". If you plan on calling just for the sake of calling, then please, send an email (I realise this sounds harsh, but that's the way it is).

I think that's enough for this first post. I warn you all again, this blog is likely to be indulgent, personal, sometimes offensive and totally for our own interests.

You stay tuned at your own discretion.

Love to all and thank you