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OrangeGirl
Member
since
09-06-2014
59
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10
Hugs
16-09-2022
05:00
You didn’t answer my question from before…. I know all about balancing side effects and drug doses… BUT…the data sheet (and the Monarch trials) specifically say that a dose reduction does not impact the efficacy of the drug. So why don’t we start at a lower dose if it’s just as efficacious. Then SE will be less too.
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15-09-2022
05:56
If there is no detriment to progression free survival with a dose reduction of abemaciclib in response to adverse events, why do we not start on the lower dose rather than starting on the higher dose of 150mg BID and knowing you will get SE's?
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14-09-2022
09:45
1 Hug
Hi, I've been diagnosed with MBC 2 months ago (primary dx 2013). I thought your post a lovely positive reply. Thank you. I've started densoumab and abemaciclib today so here we go...onwards and upwards... Your words have helped today xxx
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14-09-2022
09:07
1 Hug
Hi my lovely, Don't suppose you're under Shrewsbury are you? It took 6 1/2 weeks for them to bother to see me...and that was after me threatening to throw myself off the cliffs at Whitby Abbey! It was a catalogue of incompetence with everyone thinking someone was doing something and no one was. Even the GP didn't bother to help initially. I understand the head running wild bit and I felt like I was being eaten alive from the inside out. They had 2 consultants on holiday at the same time for 3 weeks over the summer. It felt barbaric being left in limbo. I contacted pals who were lovely but impotent. My complaint has been escalated to the chief exec but that has a wait time of 2 months for a response...I didn't know if I would still be alive at that point! I've had to do so many phone calls, research, nagging to get my treatment on track as I had to have urgent spine stabilisation surgery first then no one seem to bother doing anything. I had to chase pathology results then found no one had bother to request them, oncology were refusing to see me until the results had come back but they hadn't even been requested! I was only dx with MBC at the beginning of July...no wonder my head is in a spin! Started my first cycle of densoumab and abemaciclib today so mixed feelings, glad it's all underway but now scared as to what's yet to come... Love to you and hope you're doing better xxx
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29-11-2016
02:24
I had 6 x FEC each dose at 100%, every 3 weeks so 100% on time. This is the maximum dose you are allowed with no delays for infections, low cell counts etc. I didn't have a line in, they just used my hand veins every time and it worked fine.
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28-11-2016
05:17
I find it upsetting when people tar all farming with the same brush. "Meat and dairy products full of hormones and antibiotics" Have any of you worked on a farm? I have. We have the highest welfare system in the world. The food industry is dedicated to lessening the use of medications. For the welfare of an animal, if they need treatment, then this is given. Antibiotics, pain relief, anti-inflammatories. For all of these products, there are recognised meat and milk withdrawal periods so that their milk or meat cannot enter the food chain in that time. That is expensive and wasteful so farmers will not be doing it on a whim. Hormones/growth promoters are not used in beef cattle, it is illegal in this country. I couldn't vouch for other countries eg South America, USA. (Can't vouch for the poultry industry either, I don't have experience of it.) Dairy products are also an invaluable source of vitamins, especially for us ladies needing extra calcium for bone health. Please don't demonise our whole farming industry. I have met some amazing, dedicated and caring farmers who are proud of their product. It's not a job but a vocation, a way of life. I personally don't think you can lay the 'blame' for cancer at any door. I was 39 at diagnosis, veggie for 25 years, 6-8 hours of exercise per week, moderate drinker, genetics negative. Cancer is a mutation, anything can cause mutations. I'm not going to beat myself up blaming something I've done/drunk/eaten. You'd drive yourself mad. Cancer is a consequence of life, we can't avoid that.
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25-11-2016
05:26
Target should be in under 14 days between GP urgent referral and appointment at the breast clinic. I would take it that your NHS area is being efficient, it's no indicator as the GP cannot tell but any lump should be referred as such. I had to wait 17 days for my breast clinic appointment.
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25-11-2016
04:15
Your fear is natural and you WILL get through it, you have no choice really. Sounds brutal but is true. I actually found once chemo was underway, I had a plan, a strategy, it felt like something was being done about it all. Much better than the waiting, that's the worst bit.
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25-11-2016
02:22
Hang on in there. It is all very scary but it is in hand now. Take someone with you to the breast clinic. Don't go on your own. I had a consultation, an ultrasound, mammograms and multiple biopsies. It was a long, hard, emotional day and as I didn't know it was a one stop shop, I went on my own. Bad idea. You'll need support whatever. If you have biopsies, you won't get results for usually 1-2 weeks. With me, they pretty much knew then and there it was cancer, they just needed the biopsies to confirm it and I got introduced to a breast cancer nurse at the end. That was a shock and I was on my own and then had to drive home............don't actually remember driving home. If the worst happens and it is cancer, don't forget, the survival rate for breast cancer is one of the best and you've got a ready made cheerleader - your little girl!
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25-11-2016
02:12
I had 6 x FEC and would be in the chemo unit for less than an hour. They just inject directly into your vein with a drip going, the drug isn't going through the drip. They'd usually come round with a cup of tea and a biscuit! If you suffer from bad travel sickness or had morning sickness whilst pregnant PLEASE FIGHT AS HARD AS YOU CAN to get EMEND prescribed right from your first treatment. Beg, lie, do whatever you need to do. I was very sick after session 1 with vomiting and they'll only prescribe it once you've been ill and not before (as it's an expensive drug) but the nurses told me they would reconsider if people suffered from other nausea inducing conditions. It transformed my experience after chemo, made such a difference. No vomiting on emend. They all know you'll need it for session 2 onwards but they can only prescribe it once you've been ill. Very mean. I found I had about 2 hours after chemo to go and have lunch/visit friends/do something nice and then I'd turn into a pumpkin! I'd have to get home to bed. Drink lots. Can always disappear to the loo! Good luck, ladies. You WILL get through it .............
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25-11-2016
10:33
Dear Pollyp, I think you are in a win-win situation. Take it and if all is well (which is just as likely as not) then - bonus. If all is not well then you can honestly say you tried (is that what we can all only hope for?) and not beat yourself up because the % change in survival statistic is minimal. What have you got to lose? Good luck. PS I can't tolerate Tamoxifen and stopped it after 10 months but because I managed my chemo as 100% doseage of FEC 100% on time at all 6 treatments, the difference in % survival Tamoxifen gives me on top of that is barely a 2% increase. Mostly FEC is reduced as treatment regimes continue so I feel I gave myself a bit of a headstart! (That's what I tell myself anyway!)
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25-11-2016
09:31
2 Hugs
I was dx in 2013 (mx, chemo, RT and 10 months Tamoxifen) aged 39. I've had a copper coil (no hormonal component) since 2010 with no problems until after chemo. Currently undergoing gynae investigations due to dysfunctional uterine bleeding and my consultant wants me to have a Mirena coil. I have absolutley point blank refused and she doesn't seem to comprehend my point of view. I am strongly oestrogen +ve with unknown progesterone status (in my area, once they find you are oestrogen +ve, they don't bother to test progesterone status at all). I think my problems are linked to ovarian damage due to chemo, my gynae consultant has poo-pooed me and said it's not. It doesn't give me the greatest confidence in her guidance at all. Apparently my sky high FSH value, dysfuntional bleeding, iron deficient anaemia and hot flushes are all completely normal for a woman of my age and has nothing to do with my breast cancer or it's treatment. REALLY? She wants my coil out but clever clogs consultant won't tell me what I should then do for birth control. Feeling not listened to.
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16-11-2016
12:24
Someone I know has bone mets from prostate cancer and also used to be a runner and now can't. He walks alot but also does road cycling. Don't know if that's an option?
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10-11-2016
02:50
I know this wasn't said and it's not really annoying, just funny. My Mum made these trifles as a food offering a few days after I'd had my mastectomy and I was left uni-boobed. My boyfriend and I cried with laughter, my Mum was mortified - she hadn't seen the significance! Just to make you smile!
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10-11-2016
02:32
I think so because if you start to feel better sooner, that will be a bonus rather than expecting to feel better sooner than is realsitic - that feels demoralising. Enjoy the naps!
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10-11-2016
11:42
Yep. I remember thinking, yay, done, now time to feel better. It takes time. I was very impatient. I was advised it takes as long to start feeling better as it took to go through chemo. In reality, I don't think my athletic ability was anywhere near what I was used to for just over a year after finishing. I still suffered fatigue for a couple of years and needed well-timed naps. It's 3 years on from starting chemo now and I still have some (mild) side effects. Be kind to yourself, it will get better.
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03-11-2016
01:44
Wow. You've had a really tough, **bleep**ty, f**cking journey. I don't think there's an awful lot I can say to make you feel better but thought I'd let you know that I've heard you, scream away, you're not on your own. Take care. (Can you feel a hug coming through?)
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03-11-2016
01:15
Constructive dismissal is unfortunately a very difficult thing to prove. I've used 'discrimination' due to my cancer (I hate being under the umbrella of disibility but if I can use it to my advantage then so be it)
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03-11-2016
12:38
Thanks, Janey2. ACAS have been less than useless. They keep re-iterating that they are not advisory and are just intermediaries (is that spelt correctly?!) CAB felt I didn't have a case strong enough to take to tribunal even though my ex boss has admitted to what they said. I walked out without serving notice as I was so stressed, over worked and exhausted. That comment, I think, just underlined what my boss (there's 3 of them, this is one in particular) must be thinking subconciously. He laughed it off and ACAS reported he'd apologised - he hasn't. I've worked there for 9 years, locumed there for 3 years previously......and that's it. Quite convenient but the wife of the boss who made the comment has now got my job......
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03-11-2016
10:10
I'm currenlty in the early conciliatory phase with ACAS and don't feel suported at all. I feel no-one is on my side and I'm out of a job due to my boss' attitude to me and my cancer and referring to my time off having treatment as my "cancer holiday"!! They even had the gall to come after me for the remaining balance of my cycle to work bike (which I know they're legally entitled to do but just seems very petty.) Again, it's a small private business (a veterinary practice) which are renouned for being poor people managers with no HR (I don't even have a signed contract and can't remember when my last appraisal was.) I'm so angry at the way they've treated me and they said to ACAS that they'd been fully supportive of me.......don't know who they were supporting as it wasn't me. I know life isn't fair (thanks Dad for always telling me that!) but this feels particularly unfair.
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