Tuesday, July 27, 2010

Declining tamoxifen

When I was told that my breast cancer was homrone-receptive and I would have to go on tamoxifen, I didn't hesitate. If it was going to help prevent the cancer from returning, that is what I wanted to be on.
I have heard that some people decline it, or other start it and then stop taking it and in another post I wrote based on a New York Times article, a reader responded that it turned her into a monster, but when I queried what she meant, she didn't answer - maybe she never read it.
Nevertheless, was rather surprised when a friend of mine - who had a lumpectomy and then radiation - sent me a message saying: "I was also supposed to go on tamoxifen but decided not to. I am now taking a natural remedy called Green Vibrance which is suppose to work wonders, builds up your immune system and many other things".
I am still waiting for her response as to why she has declined to take it - the side effects/someone talked her out of it? but I cannot stop thinking about it.
Look, I am fed up about the weight gain. At the moment 6kg up from my pre-diagnosed (is there such a word?)weight, ie, from my weight before I was diagnosed with cancer last January. Most of the weight I have gained in the last two months. Well the final 2kg which have just thrown me over the edge, as it were. Oh there are other niggly effects, but wouldn't consider not taking tamoxifen. Don't want the cancer back.

Monday, July 26, 2010

my arm is up

Saw The Lymph Lady today and my arm is up - 0.5cm on the upper arm, and 0.5cm in the middle of my upper arm.
Not a crisis, she says, but not ideal. Says if it's not down on my next visit scheduled for two weeks' time, then will need to up visits (I asked her if needed to come more frequently).
Asked her about her other patient who is also high risk for lymphedema but does not have it, and she says that the other patient no longer comes regulary although she did see her about a week ago for a check-up. Essentially that other patient's arm settled down, did not budge for months, so she was managing it on her own.
I intend to get to that point although not sure how daily manual lymph drainage massage and wishful thinking is going to get me there. But I can try, can't I?
Meanwhile, my arm is still sore but it appears to be skin/muscle changes following the radiation. The Tango Man said this could last up to 1 and a half years; The Lymph Lady says 6-7 years...... and she said that it's bullshit what the gynae told me: that the swelling goes down after a while.
The Lymph Lady said she was asked to give a talk at a conference in Cape Town in December re what is being done for lymphedema in South Africa. She ssaid that is an easy talk - the answer? In the public service, absolutely nnothing. The bandaging is too pricey, for starters, she said. I hope never to get to that stage, not because of the money but because I hope to ffend off lymphedema.
Otherwise, am well. Just the damn weight......everyone seems to think it's ccrazy that I want to see a dietician again, but it's not working on my own, so going to go.

Wednesday, July 21, 2010

maybe it's best to get a second opinion

Just read this interesting article from the New York Times about wrong diagnosis of ductal carcinoma in situ, the earliest form of breast cancer. What I found most haunting - besides women being told they had cancer when they didn't, and the need for a second opinion - is that the abnormal cells in ductal carcinoma, which is diagnosed in more than 50 000 women a year in the US alone, are "removed before they develop into invasive cancer. There are estimates that if left untreated, it will turn into invasive cancer 30 percent of the time, though it could take decades in some cases."
So one wonders about that too. About the need for surgery in such cases.

Tuesday, July 20, 2010

herceptin and "flu-like symptoms"

Had my last herceptin about two weeks ago but again, as with the second late treatment, I got ill. To all attempts and purposes, it seemed like flu - runny nose, blocked nose (those two symptoms sound like a contradiction), and a bit of a croaky voice and a cough. Yet both times I did not feel ill: I just couldn't go to gym which was pretty annoying. Pretty much better now. Each time it started a few days after treatment and lasted about five days. Well, cannot be certain but I am pretty sure that both times it was what they call "flu-like symptoms" which herceptin can cause. Hope that's over now.
Oh got the test results back from the gynaecological tests. All fine. Relieved.
Kinda apprehensive now about the big tests happening on August 10. But otherwise well. Very well. It's after midnight and I am still up. And flew to Cape Town for the weekend and people were saying 'that's exhausting" but did not find it one bit so. And they were not saying it cos I had cancer. They just though flying to Cape Town for a night was a bit much. I loved it and as soon as have some spare cash, gonna book another weekend trip to Cape Town.
Oh. My weight is up again. 0.2kg less than last time, but still up. Damnit. Frustrating and disheartening. And getting heartburn. Well, think that's what that burny feeling is. Think that's from the tamoxifen. Not sure. Trying to pinpoint if it's after certain foods but cannot see a pattern yet so will ask The Tango Man when I see him next. For example had pineapple today, and that set it off. Acid maybe? Oh dear, love the fresh taste of pineapple and eat it a lot.But it's not serious.

Tuesday, July 13, 2010

tamoxifen, thyroid and weight

My weight has been creeping up badly since I started taking tamoxifen. This was to be expected. The Tango Man had told me I would gain 5% of my body weight which for me amounted to about 3-4kg. When I asked if I would eat more (cortisone does that, for eg, and you don't even realise it at first cos you just feel hungry and are responding to a need), or just gain weight, he replied: "Just gain weight". Ok, fine. So when I gained the first kilogram or maybe it was two, I wasted no time and went to see a dietician I was told had dealt with this kind of problem before.
I didn't like her but then that's no big deal. I have never met a dietician I did like although I did meet one whose diet worked - but she had a baby and stopped working. Anyway, what was a big deal was that this one didn't weigh me although I saw her a few times, and she also had the distinction of being the most expensive dietician I have ever been - think about R750 or so for an hour session. The medical aid covers about half but that's another story - for Friday's appointment at the gynae they are paying back R409.40 of the R1440 I paid. But generally they've been great.
Anyway,this dietician, let's call her The Anal Waif, told me to eat a plate of raw foods ie veggies and salad stuff, and she was not hassled about carbs such as carb vegetables like beetroot and butternut which I love, and I could eat fruit too, another natural carb which I love. But I had to eat minimal protein. So none of this large piece of fish stuff, with salad on the side. No, no. Rather a salad with a little piece of fish on the side.
Ok, fine. I kinda kept to it - well, I was aware of it even if it was not always possible to stick to it religiously - when the weight crept up.
I gained 4kg. That is, I went up 4kg from my pre-diagnosis weight. All fine. That was the prediction.
Then, very recently, I gained 2kg. I became uncomfortable and my clothes were getting tight. Tried to think back to what the dietician said. Tried to up my water intake. Then this weekend I lost just over a kg. Whew! Felt amazing.
But was concerned. Until this weekend's loss, my weight had been the same every day for week, done to the gram. That is very typical - well, for me - of a thyroid problem, the thyroid gland controlling one's metabolism. Plus my eyes started getting sore and I remember the thyroid doctor saying if my thyroid ever went out of kilter again, I would probably recognise it from my eyes - I had thyroid eye disease when I had an over-active thyroid (hyperthyroidism).
So I went in for a blood test on Monday. Won't go into detail of how the nurse struggled to take blood from me as my veins are so damaged from chemo and my left hand cannot be used because it is at risk of developing lymphedema. Got the results today. Negative. Thyroid is fine. Am using lots and lots and lots of Tears Natural so my eye - especially the slightly bulging left eye from the thyroid - so much happier there and maybe can be spared some money from going to the opthalmologist.
Oy vey. Written too much again.

Friday, July 9, 2010

The Z Sampler and other horrors

Damn it all. I want a cancer manager, someone like a life coach or a personal manager who can explain this whole cancer thing to me because I feel I am being cheated of information.
Today I went to see my gyncaecologist. Routine annual check. A week ago my one sister went to see her gynae and he said, because of her age, she needed a special kind of pap smear test. She said it was so awful that she treated herself to a chocolate afterwards as consolation/comfort eating.
Anyway, there I arrive and lo and behold, once he hears I am on tamoxifen (I wasn't the last time I saw him), he tells me that it can cause thickening of the endometrium and therefore endometrial cancer or various pre-cancer stages. So I need this test which is inserted right into the uterus.
Now my sister and I are still trying to work out if we had the same thing, as my doctor seemed incredulous that she would need such a test if she was not on tamoxifen. Whatever. Mine was called a Z-sampler although I am battling to find info on it on the Net. Essentially it is an endometrial biopsy. 'Cos that is what it says on my medical aid invoice.
And essentially it was agony. Ok, only about 4 isolated seconds of agony, but agony nevertheless. And for quite a while afterwards, I felt quite overwhelmed by it all. Now that sounds dramatic but really, when I arrived back at the office, the office manager asked if I was ok. I didn't feel it.
Something I read about it on the Net, cannot remember where, said that 5% of women find it very painful. Like period pain, said the gynae. Like period pain, said the doctor too. But I have never really had period pain so it's not a good comparison for me. And for a while afterwards - as in an hour or so - the area around my tummy felt funny, but that is just my being hypersensitive cos that feeling was more of an awareness than pain.
Now I had read that tamoxifen can cause endometrial cancer. But had no idea I had to endure this agonising procedure, which I have to repeat in six months, although an article I read on www.cancer.org the american cancer association site said repeat testing is not necessary.
What I did also find on the Net was this horrifying article on the side-effects of tamoxifen on the american cancer association site. Why did nobody explain all this to me? Is it because I did not ask?

Monday, July 5, 2010

Oh my God

Just reading through my mails and a friend of mine has just been diagnosed, again, with breast cancer. She declined herceptin and tamoxifen, the things which help prevent it from coming back, and now she has it back - in the same breast, in almost exactly the same place. Says she is having surgery on the 16th. Think she had a lympectomy before, this must be a mastectomy. Writing this before I phone her.

this is a very important day for me

Had my final herceptin treatment today. And it wasn't too bad. Got a vein which worked after only one abortive attempt (veins are messed, always been bad and now post chemo which burns your veins it's even worse and, with the threat of lymphedema in my left hand, can only use my right hand).

Anyway.....had the day off work cos worked the late shift on Saturday so said I would come in early. So arrived at 12. Bought cakes - little ones - for the nurses and other staff at the oncology centre, but had thought of waiting for all my tests. But then decided it was worth celebrating every milestone. And finally reaching July 4 2010, the day of my 17th and last herceptin, the preventative treatment.

Now just have to pray that it worked, that, as The Yoga Man said today, "Let's hope it all becomes a distant memory".

On August 10, I am scheduled to have a chest and abdominal scan, a muga scan , which is done in nuclear medicine and tests the rate at which the heart emits and is being done to see if the herceptin has affected my heart. The other scans are to see if it has affected my lungs, and if it has affected my abdominal area, ie, if it has spread. And I need to have blood tests.

I am amazed to say that I thought I had not had an abdominal scan prior to starting treatment. Well, I had. The receptionist today showed me the results of my tests - everything was clear. I remember reading that but didn't register that it was the abdominal area. That was on January 21 2009.

Anyway, then on August 11 I see The Tango Man. At 14.45pm. Then, although I will have opened all the envelopes to read the results, I will find out if I am ok.

PS: The nurses said one client was so excited to have finished her herceptin treatment that she sang the national anthem. I guess it is a prayer, the anthem, God Bless Africa.

Thursday, July 1, 2010

a taste like a leaking filling

Scheduled to have my last of 17 herceptin treatments on Monday, so it's nearly three weeks since I had the previous one, yet got that yucky taste in my mouth last night. Not as intense as in the past but tasted like I would imagine a leaking filling would taste like, if there were such a thing. A metal taste. Enough to lead to my eating too many Chinese ginger chewy sweets but I always feel desperate to get rid of the taste.

Anyway, all gone by morning.

Like what Julie Goodale had to say in her latest blog posting,Fitness for survivors:"We didn't control whether we got cancer; we can't control how our treatments affect our bodies. But we can control what we eat and if we go for a walk, or ride a bike, or run, or lift weights, or dance...."

Here's to dancing, and having fun!