The wait is frustrating and worrying. And so many questions!
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Had my oncology appointment this afternoon. We talked about the gene testing, way too expensive for me, ridiculous actually! Anyway, we decided to go ahead with chemo, only 4 cycles, starting Monday. Now it feels like this shit is real! Thought I was being super calm and positive after the initial shock. Felt like my body was shutting down after leaving the appointment. Wasn't a good idea to go get my bloods taken then, veins had gone into hiding...
Time to kick this C in the arse!
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Oh and it turns out my oncologist and GP are brother and sister!
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@katwat Good heavens! My breast surgeon says he's often assisted by his sister. She has the same initial as him and their mail gets mixed up sometimes!
Are you having TC chemo? That's Docetaxel and Cyclophosphamide. I'm having four cycles of that at the moment. If it is that cocktail, feel free to ask me any questions.
And great attitude about the arse kicking! Best wishes for Monday. K xox0 -
@kmakm Yes I'm having the same treatment. How are you going with it? Have you experienced any of the side effects? They have given me the option to use the cold-cap to reduce hair loss. Did you try it? I don't really like the idea of being in the Cancer Unit any longer than necessary. I'm thinking I might just cut my hair short anyway.0
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@KatWat I won't pretend it's a walk in the park but I have not had anything too severe happen yet. Except perhaps the fatigue, which my oncologist says I seem to get at the severe end of the normal scale.
I've had a number of side effects. I can detail what I've experienced if you'd really like me to, but we're all different and have such varied reactions, so I'm not sure how useful that would be.
If you have things happen along the way let me know and we can swap notes and whinge!
I tried the cold cap but it didn't work for me. It does for many people though. I was trying to minimise the visual impact for my kids and don't regret trying. When I realised it was futile I went to the local hipster barber & got them to buzz it all off. It was confronting but not upsetting for me. Turns out my head is a good shape, people tell me I look great. It feels amazing in the shower! I've gone with those small close fitting hats (lots of different colours - wardrobe options!) & small bandana type things.
My pubes have mostly disappeared and I barely need to shave my legs or armpits. Done it once this year I think. Eyelashes & eyebrows are thinning but hanging in so far.
Having the cold cap meant I was in hospital for six hours. Now it's three. It's your call, a very personal decision. I look forward to hearing what you choose!
Good luck on Monday. Try not to be too scared or nervous. It is what it is and you're giving yourself the best chance of ridding your body of this wetched disease.
Oh and if someone says 'how can I help?' ask them to give you one of these:
http://kitforcancer.com
A friend gave one to me and it's been great. Kate xox1 -
@katwat I'm on slight different chemo regime - Doxyrubicin and Cyclophosmamide but similar effects (then I go onto Paclytaxol. I was given the option of cold caps (and boy, are they cold). I had some thinning at the very end of the first cycle but at this stage, not enough to warrant stopping, so continued with it for my second treatment yesterday. I too am doing it for the kids but they are now on board with me stopping the caps if it doesn't look like working (I've charged my girls with learning how to tie great scarves if I go bald) For me, the actual treatment is about 4 hours with the caps (the cap adds about 1 3/4 hours to it). They set it up and get it working, then start the pre-meds, administer the chemo drugs, then leave the cap on for another 1 1/2 hours once I've been disconnected from the drip. Of course, there's time spent there prior having bloods taken and meeting with the onc.
First treatment was definitely the worst as I suffered a lot from nausea and severe fatigue. I was pretty unwell for the first 7 days. Day 8 was the turning point for me - not perfect but I could rejoin the living. The onc has already tweaked the premeds and given me better take home drugs so, so far I'm feeling better than I was last time and hoping that continues. And I'm not worried about ringing up anytime and saying that I need something stronger/different.
Try to do some light exercise such as go for a short walk, even if it's the last thing you feel like doing. It helps the body recover (and I believe push the chemo drugs out quicker). As you build up the exercise to moderately/high, there is evidence that you help protect your heart from the drugs. But don't overdue things and I would suggest if it's anything other than walking, you get the okay from your onc.
Good luck on Monday!1 -
@KatWat I had a different regime first being FEC also known as the red devil, there are other combinations like this TC may be the same. 5 fluorouracil (also known as 5FU) epirubicin. cyclophosphamide, that was for 4 infusions 3 weekly and a very hard hitting drug, I didnt cope with it and was in hospital for infusion 2-4 for 2 days to try help. I have Paclitaxel which is Taxol and you're having Docetaxel which is equivalent but different. Generally on your 1st regime cold capping is not successful if you ask majority of people, it depends on your chemo combo. My Oncologist did not suggest it on FEC he said it wouldnt work. If I were having just Taxol he said it may be somewhat. I was too sick turned out to even bother. The other thing is too, if you search here on BCNA on docetaxel there are some threads on this particularly.
Everyone is so different, there are heaps of women who worked through the whole thing with minimum side effects. I went into it all geared up and planned my work etc., and unfortunately went pear shape but the end of FEC I had to cease work for 3 months. I work in Education. So always to be open minded of you wont be in control, once I let go and just gave myself time to deal with it without the pressure of work I could cope ok. I couldnt afford it, I lost thousands upon thousands of dollars in lost income and my own savings. I did have income protection however backdated and was on it for 2yrs but I went back immediately 3 days and they paid 75% of the 2 days but taxed heavily uuugh. Financially has ruined me as Im a single parent and need to work. I cannot recoup what I have lost.
Having said that, its been a long road to recovery and I had to learn to walk again, I spent a year with an exercise physiologist which was imperative. I am back at work 5 days this year in a new School and it is incredibly hard I admit, my Oncologist said Id never be able to work full time but I have no choice. Im 2.5 years post treatment but the pain and fatigue are still tough but I manage most days without panadol osteo now.
All the best, I think you'll blitz it! and no such thing as be positive as a Psychologist at rehab explained, its about handling what comes the same way you handle every challenge in your life, changing who you are doesnt help and only adds stress putting on a constant happy face for others. Im quite positive anyway, but admit chemo was tough for me so I learnt me first....for the first time in my life.
Nurture you along the way thats all that matters...nothing and nobody else!
xx M1 -
Oh my lord, ladies! such different experiences. I guess I need to go in with no expectations.
Off for a walk now...
And thank you
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Have come back from mine. Got a bit of a fright in the dark with this big bloke coming towards me all dressed in black - my husband decided to come along too!2
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First treatment has gone well. I couldn’t tolerate the cold cap. Lasted 45mins but felt like I was going to have a panic attack, it was awful. Feeling good today and am at work. Thank you to everyone for your ongoing support. ❤️0
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Woww! at work!1
