Thanks very much for all the info Peta. Some studies find the enzyme does matter and others that it doesn't. My unit avoids prescribing sertraline for flushes if you are on tam, suggesting that whatever the studies suggest my unit is working on the premise that the enzyme does/might matter. I guess its another "jury is out" situation.
I sometimes think the more you know, the more you worry, but then I wouldn't want to not know either! As we are going to look at risk/benefit of changing to an AI at my appt in July I will ask my Prof which side of the research fence he sits on.
That's a good article PETA and has given me food for thought... which is dangerous 😉
Yes, OH and Betty completed the 8.2ml circuit in just over 2 hours - and B had a game of ball too - and we are all relaxing now. OH heading out for his first 26+ml walk of this year next weekend, so a useful leg stretch. It's my ma & pa's van and it is very comfy and quite cosy (we've had the heating on since we got here yesterday...I'm such a big girls blouse 😉). Watching rugby waiting for a miracle! lolol
Hi PETA, thanks for indulging my total noseiness! lol
I get it and just maybe the lower but longer zapping period will work in your favour and you will have minimal soreness and fatigue 😀 I do hope so and then you can relax and enjoy some 'time out' from all the travelling. xx
I had read about what I called "the 15% thing" but not looked into it much. A bit more research today tells me I was off with the %. Basically, that an enzyme that the body uses to metabolise tamoxifen is poorly metabolised by something like 5-10% of caucasian populations, and then metabolised a bit better but not perfectly by another something%. This means that if (genetically) you are in those groups you won't metabolise the tam so well and so it won't be as effective. I believe there is a relatively simple blood test but whether it is proven enough to be available on the NHS I don't know. I know some research docs who do pharmacogenetics and will probably pick their brains once I am back at work. And then I'll demand that test from my onc in due course! I guess it's just another thing to bug us when we are in worry-mode but something that is outwith our control really. I didn't mean to worry anyone, I just wondered if anyone had already read up or knew anything on the topic.
Bettypoppit - glad to hear you've got away for a wee break. Never mind about the walks, there'll be plenty of time to catch up on those soon enough
Debtex, really hope the meds help with your painful feet. Parking seems to be an issue at most hospitals, but that is very jobsworth of someone to ticket you....you must be sooo pi***d off with that...can you appeal against the fine? I blooming well hope so. I also wondered if you are at UHNS (that was) as they keep shutting off the cancer unit car park there, due to building works?
Morning Posse 😀. I'm also very seriously considering the option of not going back to the tedious and costly monthly routine of having my hair coloured and living with the grey...if....it comes through all over grey and that's a big 'if'! I usually just have badger stripes at my temples (OH's endearing description! :/)
PETA, linzz, Jingo...you seem ahead of the game in terms of research findings. I'm on Tamoxifen, so would be interested in the '15%' issue. I've had a 'hate', 'hate' relationship with my oestrogen forever...had a miserable time of it until I was introduced to "Merina". When I was diagnosed oestrogen positive, I was not in the least bit surprised and it gave me another reason to hate my oestrogens lolol. No scientific reasoning going on you understand, but it has been useful to hang my hate and anger on though 😁.
Sat on my lonesome in the caravan, waiting for OH and Betty to get back from their walk around Carsington Water....feeling left out, but so far enjoying the break away. (Resisted the lure of camping and caravanning for 50 years, even though both sisters and parents have been into it, but now really enjoy it and no idea why!).
Lovely to hear from you Murphy and I hope you aren't overdoing it. It's still early days, as the general wisdom seems to be 6+ months for recovery. LainieG, I hope you are still feeling OK today and not overdoing it either.
PETA, because I'm very nosey (and of course please don't feel obliged to answer and tell me to butt out) but I was wondering why you were having to slog in and out for 5 weeks of rads, as 3 weeks seems the usual? I hope you are also resting up if and when you need to.
Hoping all the Posse are OK this weekend xx
P.s. Junash, Zelda, Riversidedawn, enzobenzo and I'm sure others whose names I regret escape me...how are you all doing?
Lovewine - thanks for posting about hair dye. Great name by the way Interested to see the one you've used is paraben and ammonia free. I have been thinking about taking the plunge and staying gray. I'm "only" 45 but as it is now all gray this is perhaps the opportuntity to be done with the major pain of continually doing my roots. Part of my reasoning is also to avoid the chemicals associated with hair dye - although no studies have indicated causation of any type, I am firmly in the "no chemicals, no food additives" stage of getting my head round moving on. I may well colour my hair using non-permanent products sometimes though (e.g. just before I go back to work next month so as not to scare my colleagues too much). I fear I will look like Servalan though. And yes, I know that most of the Posse ARE old enough to remember who that was!!!
Peta, thank you for mentioning the coffee/tam study. I had not come across it previously. I don't much like coffee and had cut out caffeine altogether as this is a trigger for hot flushes. After a quick google I can't see any correlation between caffeine and risk of recurrence, so this is probably a safe way to try to affect outcome. Please remind me of this when I am pulling faces from the taste and sweating away afterwards LOL. Have you come across anything about the 15% of people who don't metabolise tam properly? This is something I keep meaning to look into and will be asking about next time I see an onc. My onc is talking about moving me onto an AI in a few months and he plans to look at the risk if I stay on tam as opposed to an AI. Tam seems to be suiting me, so I plan to ask for a blood test to see if I am part of the 15% or not. Not sure if this will be available. To be honest I'd pay for it if need be.
At one point I was spending a lot of time on the internet researching various things. But lately I have been doing a lot of work from home, and letting the worries of work and elderly, unwell parents take over from my obsession with all thing bc related. Hearing about this study has reminded me not to take my eye off the ball too much.
ah disappointing about the placebo group Peta - but yes I would want to choose which group I am in so probably not a good candidate either. My husband takes low dose aspirin every day and I am going to put it to my onc when I next see her - sadly the research I have read suggested that low dose doesnt have much effect, but I wouldn't mind trying!
Bettypoppit - this role is very new at my hospital and I had to ask to be referred having discovered that this person had joined the hospital. The remit is to incorporate effective, proven and cost-efficient complementary therapies for patients and staff at the hospital so not just associated with oncology. Your onc may be able to refer you on to someone locally even if its not at the same hospital. I only found out there was one in my area by googling - BCN didnt know about it.
Jingo, that sounds very interesting. I don't believe that there is anything like this offered in my area, which is a shame. I hope you get some useful insights and tools and I would be interested to hear more about it xx
Hi Posse, great to hear that you are home LainieG - FAB-U-LOUS 😀. As you seem to be fit and in the mood for cleaning, any chance you could nip round to mine....it's a bit of a tip still! lolol. Peta, getting your rads done sounds a complete drag with such a long journey. It seems a chunk of time to go still, BUT, you will be finished pretty soon...grit those teeth, head down and keep at it. We're waiting for you on the podium 🐧🐧🐧😀.
Jingo, is your integrative therapy, like investigating a fully holistic approach to life ...all aspects of the physical and spiritual being? I'm intrigued. PETA, you have mentioned so many things too, that just haven't come into my orbit. I'm wondering what I need to be considering.. I've not been enlightened during the treatment as to why I got bc so I don't know what - if anything - to do differently now. I just don't get it. Muddled and distracted by it.
With regards post rads fatigue, i was pretty wiped out for 12 days, very stiff achy legs and getting up from sofa and up staires was quite
an effort, but i do feel like that it is now improving. Certainly my legs and general mobility is more normal. However, had to bother the gp on Thursday as my 'burned' skin was really bothering me. On antibiotics plus codeine & paracetamol now but thankfully much more comfortable. I can see that my skin is beginning to heal. Phew! In the meantime, as i'm so sore and currently bra-less (which is hideously uncomfortable at anytime) I cannot even walk Betty again - I seem to have gone backwards 😞 We've come away in the caravan today - 1st trip since last summer and OH is going to have to do the walks on his own....such a disappointment. However, I seriously need to 'suck it up' as the kids say and stop feeling so sorry for myself! lolol
Here's hoping that we can all find something nice to enjoy over the weekend. It's been a very long haul, but we ARE getting 'there' 😀😀
Glad to hear you're out LainieG and getting ship shape before going back to work. Sorry to hear about your feet Debtex, mine are still numb but no pain - it must be very debilitating to be in so much pain.
Keep it up Peta, tick off the days and you will soon get through it. My own tiredness improved in a matter of days after rads finished. but my skin has been incredibly sore this week which only started after a few days break. Now using aloe, aqueous and calendual cream but have a bit of a rash going on too which is very itchy!
Had two evenings out this week and discovered a disappointing side effect - when I drink a glass of wine I have a very long hot flush, followed by profuse sweating. Very embarassing - I hope that one fades with time!
I had my meeting with the Integrative Medicine doctor - we talked about the supplements I am taking and the changes in diet which she generally approved of - I did ask if any of them might interfere with Tamoxifen and she said it isnt possible to tell because there are no concrete studies, but I take everything with breakfast so thinking maybe I need to split them up a bit. I did ask about sleeping in the dark with Tamoxifen as I read a report about melatonin (and our bedroom is never full dark), but we got side tracked with something else and I didn't get an answer. Hadn't heard about coffee!
I am not very spiritual or mind-body so I asked a lot about what I could be doing and she talked about the 'limbic cycle' and brain networks and she explained to me why feeling gratitude, compassion, empathy, acceptance etc are all important in controlling the busy mind and stress/cortisol production. Plus of course mindfulness. I will be meeting her again so hope to learn more and have more questions answered. I also asked if I could join the Add Aspirin trial as I am interested in the effects of aspirin on cancers.
Had my first session of manual lymphatic drainage this week for the lymphodema - that seems to have helped with swelling but is very expensive. Going to try the Bowen technique next week too. How is your arm Peta? Did anyone look at it for you? I hate my sleeve but I am glad I got one when I did.
Bettypoppit - how is your skin today? settling down I hope
love to all the Posse xx
Hi Madam, big hugs. The smallest task can take the biggest effort and still prove elusive...I'm giving myself a pat on the back if I manage to cook supper - even when it's nothing more than oven fish & chips! You are still only a few weeks finished from the dreadful poisoning and I'm sure it will still be messing with your mind and mood. Crying has been a feature of this process for us all at times but we are getting through this. Hold on in there. xxx
My onc said 6-9 months after the end of the last chemo cycle to feel "normal" - whatever that is! But of course in that you possibly have an operation and definitely rads which take it out of you some more.
I feel ok mentally and think I can do stuff but when I try and do them I am exhausted!
Hope everyone feels better soon
Hi Madam, I think the fatigue thing can only be answered by 'how long is a piece of string'! My onc says that some take 6-12 months to recover fully :(. With regard the sore and tingling extremities, I am finding the pyridoxine seems to have given a 50%+ relief in the 10 days that I have been taking it and i think others have reported the same, so it might be worth trying. With regards sunshine, I know that post radiotherapy you need to factor 30+ and cover up, but not sure otherwise. I hope you are getting over your cold xx.
Hi geeG, day 12 since last rads...still red raw under my breast - the pain has just had me weeping in the shower .....I am a total woosie mind. Just over 24hrs with the flamazine cream so still hoping that it will work. If not, I'm going to have to trudge back to the drs and actually hang around to see one of them...not a thought I relish. xx
LainieG, hope you are still OK and not gone round the twist and up the walls yet! xx
I've had a minor surge of energy and activity this afternoon. Hoping that I won't be paying for it tomorrow and that maybe, this represents
a little **bleep** of light at the end of fatigue tunnel 😃. I do hope so, I've got so many ordinary things I want to get on with and I sooooo need to get on with some proper walking too.
I'm sorry, but I've mostly lost track of where posse members are on the roundabout of treatments....so hoping all are doing OK and not being too battered. PETA, after tomorrows zap you are over halfway through 😃.
Hi LainieG, I hope you are feeling ok and crawling up the walls as I know I would be!
Nicnac, I know precisely what you mean about end dates, my original thought was that I would be finished by end of March but then I was told mid-April and today I got my rad dates through and I will (hopefully) finish at the end of April! I feel like I can't plan anything....
Peta, you were spot on with the eyebrows - on inspection this morning I found a lot of very fine eyebrow hairs had surfaced, still a long way to go and no eyelashes either but still a step in the right direction.
I hope everyone else is feeling well and starting to get more energy back