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Too tired.....
As I said after my last Herceptin....I'M
KNACKERED! Thank you to all the other Herceptin recipients who e-mailed me to say that I'm not abnormal. I seem to spend most evenings dozing off and feel washed out during the day.
On a happier note, my eyelashes are starting to grow back in again but I am aware they may fall out again. Joy. God, I'm feeling a bit sorry for my self today. Can it be the thought of Herceptin tomorrow? Or just longing for a
European vacation? Bit of both perhaps.
Sorry to be less than cheerful. :-(
just joking :-)
Labels: about-marjory, breast-cancer-symptoms, chemotherapy, living-with-cancer
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Herceptin side effects
The last time I spoke about
Herceptin and it's side effects I proudly said I didn't seem to be experiencing anything other than a running nose. Spoke too soon!!
I had my tenth
Herceptin last week and just after the nurse left I wondered why I felt so tired? That
fatigued feeling got a whole lot worse and by evening it felt like chemo all over again. Thankfully it had mostly worn off the next day but it did give me a bit of a surprise. I had been told this could happen but was pretty sure I'd managed to avoid it after ten treatments. I have seven more treatments to go so it will be little me off to bed after the nurse leaves 'til well into the next day. Actually when put like that it sounds quite nice!
The other alarming thing that has happened is that my eyelashes have started to fall out again. The air was blue when i noticed. Now, what I want to know and nobody seems to have the answer, is this a side effect of
herceptin or a side effect of chemo? My eyelashes did grow back in much longer and thicker than before and I thought
aaah a nice reward for months of feeling crap. Again, spoke too soon!! Joking aside I am more than a little concerned that I'll wake up to find them all gone. I found it distressing the first time ( shallow I know when you're
receiving life saving treatment) and if it happens again I don't suppose I'll be over the moon. I just love putting on mascara and seeing LASHES. If anyone out there has experienced this let me know. I also want exact timescale of regrowth. Only joking....
As a note at the bottom( Ha Ha) I also seem to have
diarrhoea rather a lot and I know this can be a side effect with
Herceptin. God, serves me right for being so confident!! Ah well it could be worse, I might have the aching joints or a
frozen shoulder as well. Now that I think of it......
Marjory
Labels: a-lump-in-the-breast, breast-cancer-symptoms, cancer-support, chemotherapy, herceptin, living-with-cancer, mammogram, symptoms-of-breast-cancer, what-is-a-mammogram
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And now for the science bit.....
Thought I would write a bit about my ongoing treatments now that the chemo is over. People keep saying to me ' so glad you're treatments over' and mostly I just smile and agree but it's far from over.
For the next five years, or more, I will take Arimidex daily. Arimidex belongs to a group of drugs called aromatase inhibitors which interfere with the action of aromatase which is an enzyme that affects the level of the hormone oestrogen. As my cancer was oestrogen sensitive the plan is now to have as little, or no oestrogen in my system.
I don't seem to get any side effects from Arimidex but I believe it can cause aching joints and muscles.
The chemo seemed to bring on the menopause with my oestrogen levels at rock bottom, which was a good thing. Didn't last though! My last blood test showed a sharp rise in oestrogen levels which basically means my ovaries have recovered from chemo. So what do we do now?!
I have two choices. First is a monthly injection of Zoladex which would keep oestrogen levels down. Second is an oophorectomy. This is surgical removal of the ovaries, which I think is the option I will choose. If you're going to do something do it properly!!
I also have Herceptin at three weekly intervals.
This is given the same way chemo is given through an intravenous infusion that lasts approx two hours. Healthcare at home are a group of nurses who do this for patients at home. Again not much in the way of side effects. I tend to feel exremely cold for the rest of that day then have diffuse joint pain for a couple of days following treatment. I thought I had hayfever with a constantly dripping nose but the nurse has told me this a very common side effect of Herceptin-how odd!
You can read more about
herceptin treatment by following the links on the right column of this site.
Labels: arimidex, chemotherapy, herceptin, zoladex
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It's Over - Well, Almost !!
It's over! Had my last dose of poison on Wednesday and I simply can't believe the horrors of chemo are over. Only 15 more herceptin to go, but who can complain, they're given at home and so far so good - no side effects.
Have spent the day doing normal 'Mum' stuff and just enjoyed lovely meal with Gordon (which I thought he deserved) - a few glasses of wine and I have to say feel pretty good. Am struggling against steriod come down but am aware it's last time so much easier to deal with. I'm afraid blogging over Christmas was always going to be a struggle.
Organising Christmas for eight children was fun but tiring and I did dinner for the family. I can honestly say it was the best Christmas ever, fun and laughter ( with me snoozing in corner) is what we will all remember-fantastic. Hogmany is a big thing in Scotland and I can honestly say I have never had a quiet one.......until this new year.
Somehow the opportunity arose about 8pm that we could be on our own and we took it! It was fantastic.....until of course when the bells sounded and I missed the whole thing, kids, neighbours, mess, etc, etc. Would I do it again....god, yes! Well .... maybe not. I can honestly say to anyone out there reading this and about to start their journey, for some of us it's really not too bad. I've managed to keep on with my normal life without too much disruption and I think what I want to say is that life goes on.
I'm aware that may sound very smug since I'm through the worst but it's not meant to. It's not been nearly as bad as I first imagined and I'm no super woman, just a normal woman and mother. I think the best advice, and I hate giving it, is be yourself and ask for help when it's needed. But you know something? I can't wait to get back to being ME again. I've been on hold for eight monthes now.......take cover!!
Marjory xx
Labels: about-marjory, chemotherapy, herceptin
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Strange Brain
Not really sure what to blame but something has scrambled my brain. Now, I hear you all .... middle aged woman going thro enforced menopause ..... of course you have a scrambled brain.
Now while that may be the answer, I personally am blaming the steroids.
God, they're horrible!
On the day of the poisoning by taxotere I feel ok. Next day my body feels strange and tired. The answer should be wee nap in the afternoon, but NO. My mind is so wired and agitated I found myself planning next years Christmas dinner - not this years. This goes on for two or three days then WHAM, I'm the most depressing person to be around.
I read an article about adrenal fatigue and "brain fog" and I'm pretty sure I know what they mean!
Must be very confusing for my poor family. It really takes a whole week of strange behaviour to be anything approaching normal.
Think of it a strange cross between being senile, a drug addict and premenstrual all at once.
Some may say " and the difference from before is ..... ?"
Fair point ( minus the drugs of course) !
Labels: chemotherapy
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folks are strange
Well I'm well on the way to the finishing line now. First dose of taxotere was last week and, touch wood, all seems to be well. It does give you strange aching muscles and joints, not the usual 'i've overdone the exercise kind' but bizarre pains in joints and muscles that don't actually exist. Three or four days of tiredness and now I'm back to fighting fit......Well, you know what I mean.
The fab news is I have a head of hair to rival Kylie! All be it mine is a revolting mousy brown with rather a lot of grey in it, but who cares, it's hair.I refuse to acknowledge it may fall out again but if it does it will be the bald look for me. No more wigs or scarves, ever. I try to convince myself I look elfin but I must be the only 40 something grey haired elf ever to have lived. It is lovely to have eyelashes and eyebrows again, it's amazing how excited I get about these things!
I was just thinking the other day how peoples reaction to the dreaded C diagnosis is far from predictable. People I thought would run a mile, only to say 'see you when you're better' have been absolutely amazing-helping with kids and work and generally being amazing human beings and friends. On the other hand there are the people who I would have bet money on about being supportive who have disappeared from the horizon only to phone once in a while and say their terribly sorry but they have a lot on their plates! I'm guessing it's fear of something so horrible touching their lives but if this has taught me anything it's to never to ignore someone who is going through something difficult or awkward . This may all sound very dramatic but a few kind words always make a difference.
A friend of mine lost a child some time ago and yes you,ve guessed it, she has been one of my main sources of support and above all laughter. She has a way of cutting through all the crap and just asking the right questions at the right time. It's so refreshing to be asked all the questions nobody else dares! She really is a star and she cheers my days with her straight forward approach to the dreaded cancer.
Now on the subject of the Christmas party dress. My idea this year was something that would cover me from neck to toe-not very sexy but there is nothing more off putting than a slipped or indeed missing prosthesis. And lets face it after a few festive tipples tht could the scenario! Help is at hand. On a shopping trip to Edinburgh I found myself in a shop called Hobbs where a very charming shop assistant persuaded me to try on a rather daring wrap dress. Now bear in mind I am the wrong side of forty, vertically challenged and have had too many children ever to call myself svelte but WOW! AMAZING! This dress (with cami underneath obviously!) made me feel something approaching sexy. So of course being a woman I bought two! Roll on Christmas- one problem solved! Marjory
Labels: cancer-support, chemotherapy, hair-loss
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half way there
Well that's me half way there. Ten treatments of radiotherapy gone and ten to go. Four treatments of FEC over and four treatments of taxotere ahead of me.
Radiotherapy is strange.I had made my mind up that it would be a breeze-no sickness and less tiredness. Well I was wrong!!I've felt sick since the start and although this is uncommon in radiotherapy of the chest wall I'm told by my onc. that it does happen. Sods law really. I also feel SO tired. Maybe a build up effect, who knows?
The good news is that my hair has started to grow back(not however my eyelashes or eyebrows!)I'm sure it will all go again with the next round of chemo but it does feel nice. I keep a close look out for grey or curly ones-my biggest nightmare. Only joking.
I've invested in false eyelashes and they are great fun. They give a whole new look to my face. It's hard work going to bed-there are so many false bits to take off that I wonder if Gordon recognizes me!It's an amazing thing-6 months ago all of this would have horrified me but it quickly becomes 'normal'. The one thing that shocks me, no that's too strong a word,surprises me is my reflection in the mirror. I don't think I'll ever get used to my bald head. I don't think I look too bad but I still get a shock when I catch sight of myself.
AAARGH-WHO IS THAT WOMAN!!
Along with the dreaded fear that cancer brings along with it I have to admit to feeling bloody angry. Angry with healthy people, angry with beautiful people, angry with pretty much everyone. I hate this,it's not the nice dignified way I hoped to deal with it all.
Being with other people has become a bit of a struggle not to explode and shout out things like 'stop bloody moaning about trivial things and enjoy being healthy'. I should maybe try it, it might make me feel better. Would then be 'Marjory nae pals' so maybe not. I think people would be shocked if they knew just how much fear and resentment this disease brings with it.
Sorry to be less than cheery but, hey, cancers not fun.
Marjory
Labels: chemotherapy, radiotherapy
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Thank FEC it's over !
Well - thats's me finished with FEC and relatively unscathed. Mild nausea and tiredness but nothing to grumble about.
My hair never did fall out completely so Gordon helped me shave the remnants last night and I now have a beautiful smooth head - no more jaggy stubble - hurray !!
My eyelashes and eyebrows have only thinned a bit and not fallen out so I can cope with that but it did give me a good excuse to spend lots of money on posh makeup today - which cheered me up no end.
My next appointment at hospital is for a "simulator" which - despite sounding like something I would refuse to go at Alton Towers theme park - I'm assured has something to do with lining up the radiotherapy beams and ... wait for it ... tatoos !
So - four weeks of radiotherapy and four sessions of taxotere and then I'm done (a year of herceptin excluded of course)! Roll on - doesn't time fly when you're having fun !!!
Marjory
Labels: chemotherapy, epirubicin, hair-loss, radiotherapy
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All change.....
Well it's all change this year! Instead of rushing four children back to school this week its one to nursery, one to new school in Edinburgh, one to college and one to university. Boy the whole thing makes me feel old-how did it happen that I'm old enough to have a child at university?!
Anyway, I've been not too bad at all this time after FEC, maybe slightly more tired but all in all nothing to grumble about. I get my last dose of the awful stuff this Wednesday and can't wait to get it over and done with.
My month of radiotherapy seems quite attractive at the moment. A whole four weeks of peace and quiet driving myself to Edinburgh, 5 minutes in a machine then home again! What a sad life I must have if I find that something to look forward to. I really must get out more......
After radiotherapy I start my 4 sessions of Taxotere and Herceptin. I seem to have it in my head that Taxotere won't be as bad as FEC-less sickness, tiredness, etc. I'm I just being hopeful? Let me know anyone out there who's had it and how it affected you. Can't believe I'm just about half way thro' my chemo bit of treatment and I'm so grateful I've felt relatively well most of the time.
I have to say I'm finding it harder than I thought to stick to the dairy free diet. Feeling tired and sick some of the time just makes me want to cook and eat things I'm familiar with-real comfort food in other words! Since trying to stick to the diet I have a ridiculous craving for chocolate milk shakes-I didn't even like them before all this!
I suppose it's all about balance in everything.
Gordon and I have our wedding anniversary coming up and have booked a fantastic night away at a luxury hotel-I CAN'T WAIT. Normally I wouldn't have minded no summer holiday but this year I have minded....a lot. Can feel myself scowling at anyone enthusing about their fortnight in some sunny place. Not very charitable I know but I do hide it well (so far) Heaven help anyone who tells me they had a terrible holiday.
Wish me luck on Wednesday and here's hoping my bloods aren't too low to get the wicked stuff.
Marjory
Labels: cancer-diet, chemotherapy, herceptin, radiotherapy
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3rd time around.
Well, I'm fast approaching my third FEC chemo treatment. Slightly apprehensive as I've heard of the accumulative effect of chemo and as I've been feeling great I really dread the thought of that being compromised.
Also slightly worried about my poor old
veins with epirubicin. My veins in my left arm feel bruised and pretty uncomfortable because of the epirubicin being pumped in and I'm kind of suspicious there might be an accumulative effect here as well - lets hope not!
My two eldest children are taking me for my drip-drip this week as poor Gordon has run out of holidays.
Ally(19) and Amy(17) are very interested to see what goes on. I guess like most people they thought the whole chemotherapy treatment was very scary involving beds and sick buckets. When I explained what really happens they looked very unimpressed-what no drama? Just you and a drip stand? How dull. If only they knew!!
One of the nice side effects of chemo I was promised, was my periods stopping-well they lied! I've had two now and really wish they would stop. I'm considering asking for total hysterectomy when I have my left mastectomy next year. Get rid of it all then no more worries!
MarjoryLabels: chemotherapy, epirubicin
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Too busy to blog.......
Well it's been a while since I posted a blog which is bad, but good as the reason is I've been too busy. Sounds lame I know but it's true!
I've now had my second dose of FEC and will have the third next Wednesday. I've just about lost all my hair but not quite. I thought I would wear my wig all the time but since we seem to be living in tropical conditions (yes...Scotland!) I have taken to wearing much cooler, and I think quite fetching, bandanas.
The first two treatments have gone pretty well I think. I start to feel tired and sick about six hours after 'the hit' and just go to bed to sleep it off. The next day I feel a bit better then better still the next day, and by day 3 or 4 back to normal. I've not had any side effects so far (fingers crossed!) apart from a slightly sore arm from the epirubicin.
The one thing that did happen was that my pre chemo bloods came back with a very low-0.97-neutraphil count. This panicked me but the nurse on the phone reassured me and said just to come in slightly early the next day and they would recheck it. By the next morning it had risen to 1.72, boy was I relieved as the cut off for chemo is 1.00, so the chemo went ahead as planned. At least I'm prepared if it happens again.
My eye lashes are thinning.........NO!!!! Can cope with the rest but really want to keep them, or maybe it's just I know I'll be useless at the false eyelash thing.
Talking about eyelashes that reminds me of the most recent Kylie interview.
Now, i ask you? Yes she's had breast cancer, yes she's had chemo and yes it's horrible but not once did she acknowledge how hard it must be for all the other women out there who have money worries, or who need to work full time, or who have kids who need looked after.
Or come to think of it have a team of Chanel stylists to stick on their false eyelashes! I still think that Kylie is great but as a fellow breast cancer sufferer the interview left me saying
' come on Kylie, get a grip' - ( sorry to any die hard Kylie fans! )
One of the positive things to come out of this is that Gordon and I have decided to change our diets. We've cut out dairy products and are increasing natural soya products and are now eating mostly unrefined foods. We decided to do this after reading material about the low incedence of breast cancer in China and the thoery being that they eat no dairy but a large amount of soya.
Gordon has had problems with high blood pressure for years and it has fallen dramatically since starting this diet hey - Fab or what! So
he wont have a stroke and
I wont get breast cancer again.....well thats the theory. It does make me feel I'm doing something positive though.
Anyway, life goes on as normal. My daughter passed her driving test today and believe me, I've had a lot to worry about recently but none of that compares to the worry of your child hurtling around the country side in a metal box! Still, does mean somebody else can do the shopping run.
Labels: about-marjory, chemotherapy, epirubicin, hair-loss
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CEF Chemotherapy Side EffectsWell, who'd have thought it....chemo wasn't that bad after all. Have waited to post this blog cos I thought the dreaded
chemo fatigue would hit me but it hasn't - fantastic!
Had chemo last Wednesday (21st June) and having it was very nice actually, a seat for an hour or so chatting to a lovely nurse and Gordon, then cup of tea and home.
Felt slightly nauseous about 6 hours later then sick a couple of hours after that. I really felt quite panicked as I didn't know how long it was going to last - an hour? a day? the whole three weeks?!! Lucky old me it only lasted for three hours followed by 12 hours sleep and I have felt fantastic ever since. Gordon keeps scratching his head and wonders if I got a placebo instead....lets hope not.
The only side effect I can honestly own up to is a metallic taste in my mouth, but it's not putting me off food (or wine!) so not much to moan about there.
To feel this good is SUCH a relief. I'm not totally daft tho' and do realise it probably won't all be plain sailing but 1 down, 7 to go!
If anyone is reading this and about to start chemo, don't listen to anything anybody has to say that's negative. Just wait and see how YOU cope with it.
I was determined to not be a 'lie on the couch' type of patient and as it happens I feel amazing and full of normal energy levels. So, keep positive and sing a song very loudly when someone says ' oh no not chemo, my second cousins great aunt just felt so awful.........!'
MarjoryRead more about
chemotherapy side effects on our chemotherapy thoughts archive page
Labels: chemotherapy
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Surviving radiotherapy treatmentMarjory won't start radiotherapy until the four sessions of CEF chemotherapy (FEC chemotherapy in the UK) are over but we've already begun chatting about how she'll cope with phase two of her
breast cancer treatment program - radiotherapy to the chest wall and to the supraclavicular lymph node area.
Where better to look for advice than to someone who has already been there, done that ... got the T shirt. Jacki Donaldson has a great
post about surviving radiotherapy on the Cancer Blog.
Check it out - it's very well written and gives some great tips for dealing with radiotherapy side effects.
Labels: cancer-sites, chemotherapy, radiotherapy
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Sleeping With The Light On
Breast Cancer, Sleep and Keeping the Lights On At NightWhen I first read about this study it all sounded a bit to far fetched to be true - but the evidence does seem to support the claim that
sleeping with the light on can increase breast cancer risk.
The study was certainly done by reputable scientists at the National Cancer Institute and National Institute of Environmental Health Sciences in the United States. The authors believe that it might partly explain why breast cancer risks are rising in rich countries - but don't seem to be in the developing world.
Now - it seems clear that some of this increased breast cancer risk in the Western world relates to issues known to be linked to breast cancer like family history, smoking, drinking alcohol, diet, medicines, and such reproductive factors as childlessness and having children late.
But evidence has been building up that using electric light during the hours of darkness may also increase breast cancer risk.
Other research in the past shows that night shift workers are much more likely to develop breast cancer and that women who are in the habit of frequently staying up late are also at increased risk. Some studies also show that totally blind women are less at risk from breast cancer.
The link seems related to melatonin - a substance naturally produced by our body when in darkness. Melatonin is known to impair the growth of cancer cells and improve the immune system.
Now - like all these studies, they're only a small part of a bigger picture - but, as I type this, Marjory is reminding me that she doesn't like the dark and has slept with a light on nearby for most of her life! We'll be changing that from now on!
As for me, I'm trying cider vinegar for insomnia - I'll let you know how it goes !
Gordon
Labels: chemotherapy, insomnia, living-with-cancer
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Herceptin - UK breast cancer patients win battleThe National Institute for Clinical Excellence (NICE) in the UK have finally given the go ahead for all suitable women with early stage breast cancer to receive
Herceptin Treatment.
This means that a woman with HER2 positive breast cancer with our without lymph nodes can be offered herceptin as part of her treatment plan. The final decision about giving herceptin will be taken by the oncologist in charge of the case.
This sees the end of a long battle for breast cancer pressure groups and breast cancer sufferers.
Herceptin in the UK was previously reserved for women with widespread breast cancer disease or with several positive lymph nodes.
This means that the NHS system will now fully fund herceptin treatment for those UK women who can benefit from it.
Read
more in the press here
Read my previous postings
about herceptin treatment, about
herceptin UK, about
Tykerb and about
new drugs for breast cancer.
GordonWhen to use herceptin remains an issue for many patients with breast cancer - read more about it in our herceptin treatment archive page
Labels: breast-cancer-symptoms, cancer-support, chemotherapy, herceptin, living-with-cancer
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