chemo kicks off 20 May - any good buddies?

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901

I read that bananas may be OK for you Lily (and Nicky).

I think my Mum’s worried that it’s a whole 20 years too soon for me to be going menopausal. I think if I were in my 40’s I’d be less hesitant. There’s also a logic problem with them for me, debated on whether to share this thinking but you’re all intelligent women…

Correct me if I’m wrong but they work by removing the hormonal food source don’t they. Doesn’t this just keep a secondary in stasis so to speak? Does it actually help the body to kill the tumour (ie cause apoptosis)? If it just keeps it in stasis then it makes sense to me to use hormones once you know there is a secondary but as an adjuvant therapy I wonder because the younger you are the better your body copes with stuff like chemo so I’d rather know that it’s there and deal with it now than let it lurk silently for 5 years and then have to do chemo if there was something…

or am I missing something, do hormone therapies actually help the body to kill a tumour?

You can tell my onc is still hiding from me can’t you LOL.

Thanks for sharing that though nicky, it does help to get different perspectives on it.

Angie

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Hi everyone

Lily just read about your probs my temp staying around 34.5 even when iam having flushes so its not just you get the shivers alot and feeling the cold real easy was wondering if it was my age lol. As for eating have you tried bananas there good for loose. My craving is foe anythng salty ie eggs with salt cheese bacon but i put this down to the fact that ive been taking some steriods again and i was like this when i first started chemo and taking them also my appetite increases on them so giving them up again.

Joanne

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Hi, (the story of the night the dog nearly got it!!)
does anyone know exactly why we are taking the steroids. I know it is to support your system but not sure what the exact reason is and how they calculate the dose for each. Eg on tax you start it before the drugs, so must protect you in some way. My pharmacist told me about bananas too but couldn’t cope with them at the worst time either, will bring them in soon as it is settling. The really tricky thing as I’m sure Nicky is finding too, is when to react so that you then don’t end up bunged up! Who knows when silence is good or bad news in that dept, after the runs. Nicky really sorry to hear you are not getting the big really good run you deserve. totally c…p! I am not losing weight though, too many steroids each month. My muscles down the top front half have hibernated from bloat. Will take up swimming again when allowed to. Over to the story.

So last night, feeling not great and with a headache following no sugar for 2 days I thought I would just sink into bed and hope to be better in the morning. Decided to take no painkillers as they upset my tum too. I was really tired and for the first time in ages, I must have nodded off almost straight away. I woke up at 11.40 to the sound of continual tapping outside the bedroom door. The dog Max!! With all the old carpet taken up ready for the new one arriving, the hall, landing and stairs are now wooden floorboards. He was (I can’t believe it was not deliberate!!) marching up and down outside the door, forward and back non stop. It sounded like horses going past! Got my son to carry him downstairs, as Max was too scared to walk down with the gripper spikes all sticking up. All went back to rooms and then tap tap tap, the bu…r had come back up again!. LOL it was like the Billy Goats Gruff story tapping over the bridge! Went and woke my son again (hubby totally unconcious to all this having taken painkillers for his back) and he carried him down again and shut him in the lounge. Couple of hours later I am dreaming of wolves, no its him again howling for England right under our room!! So I went down and opened the door for him, with a few choice words and went back to sleep. 4 a.m. tap tap tap he’s back upstairs again doing drill patrol outside the door! Hubby goes on the milk train so he stirred and I said b… dog take him downstairs before you leave. Back to sleep hooray. 6.40 tap tap tap. - - - -!!! 7.40 the alarm went off so phoned hubby at work, the - - - dog. He said he didn’t seem to want to go downstairs!! So got up and carried him down myself and surprise surprise the dog has snoozed happily all day, while I have had a rotten headache. This was not helped by having the smell of the new carpet and being told they could not carry any rubbish away so I had to move it all. Final and possibly worst thing, when I came out to pay, one of the carpet fitters was coming out the loo without asking if I minded and also without flushing so I wouldn’t hear, so had to fumigate the toilet! I feel a song coming on ’ things can only get better, can only get better…’
ps the dog did survive and no animals were harmed in the filming of my bad day…

Angie I will read up about the hormones and get back to you if I find out anything interesting or useful. I should be starting to think about this stuff as I think you start tablets when you start rads.
My onc is now doing business with my husband so I hope that may help him to think of me as more than a patient number, not that I am aware he ever would, but nice to have friends in the right places.My neighbour works for a firm that imports all the chemo drugs, so I have already told him that on no account is he to change jobs in case I need him to nick a few one day if the NHS let me down! Joanne I was telling my research nurse that lots of us are cold, it has not been recorded as a problem apparently. She writes pages on my escapades and side effects every time I go. Nicky, how many of those horrible injections do you have to have and where do they stab you? I read that another option is radiation of the ovaries, which is permanent.Not sure how many it takes but I believe it is permanent. In the Jane Plant book she recommends that over the options so must have something in favour of it. Will read it again and post. I agree oestrogen is something to keep an eye on, might be worth switching to organic milk if not already as the cows in ordinary dairies get hormones. We should be past the latest trial results coming in, so there should be new stats on the aromatase inhibitors maybe. You could also look at the ‘susanlovefoundation’ site to see what USA are thinking about it. They are beyond the UK mostly.
Anyway headache has gone hooray so have typed myself into a better night. Hope you are all well and hoping for a better night’s sleep!
LIly x x

904

lily
you make me laugh
if i was you i would of set your dog on the carpet fitters. Lazy a**e holes. Have you thought about getting slippers for max.
hope you all better soon
Lee

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Hi Lily - the dog got lucky! Maybe he’s just a twinkle toes and wanted to tap dance on his new found floor boards. Next stop Britain’s got talent! Bet you’re glad of the new carpet even with the overpowering smell, please hang onto the old red one for when I visit :wink:
Back to hormone therapies and ovaries - what a lovely subject. I’ll share what I know and hope I don’t scare anyone in the process as I’m one of the secondaries ‘girls’ who, to be honest I wanted to avoid when I had primaries! This is mainly for Angie and Lily but also Lisa as she is definitely on the same path.
Hormone therapy doesn’t stop or make you post menopausal, it can stop your periods but at a younger age they’re unlikely not to come back. Tamoxifen is given for 5 years as this gets you past the 2 year post dx time when recurrencies are most likely and it’s been found to be the most effective length of time. I understand some women are now offered AI’s after this time as a continued treatment, but only for post-menopausal women - all of this for hormone positive BC only. Having the ovaries removed or ablated (with radiotherapy) makes you post menopausal and the concern my onc had 1st time round was with an early menopause you are at greater risk from osteoporosis, however Tam protects you for the 5 years anyway and as I now know there are other drugs (bisphosphonates) that can help with the bone. However I have a friend who had to have a hysterectomy in her mid 30’s for other reasons so it’s not unusual to be post-men at an early age and by exercise and diet you can build up your bone strength.
Now onto secondaries (sorry if you don’t want to read this). Obviously less women get 2ndaries than primaries - you can see this from this website alone and the majority (by a long way) won’t have a problem - remember that! My Mum for one, she’s 15 yrs post dx and no problems. For me tamoxifen stopped working and/or my BC mutated hence a microscopic bit went to my bone and for all I know has been there from the beginning as no scans would have shown it up until it was big enough. Tamoxifen blocks the receptors in the BC cell and the cell will die or not divide and grow. As Tam is given post op, when the BC has gone, it’s there to get rid of any microscopic BC and stop a recurrence. AI’s have the same effect but work in a slightly different way. Given as hormone therapy, as a treatment for secondaries, there will be further shrinkage of the tumour sites as it kills the cells and can get to a stage of NED - this is for both Tam and AI’s. If no further shrinkage occurs it can hold things at bay by stopping the existing cells dividing anymore. The problem with 2ndary bc is that it will never go away so even if there’s NED on the already known sites it can manifest itself somewhere else - and will usually do so over time. This can happen if a treatment stops working when your BC becomes resilient to it. However, chemos can be used again to knock it back.
Does this help? This is my understanding, without reading too heavy literature, and I’m quite happy to be corrected by anyone with more detailed knowledge. In terms of what you do after chemo for primaries I’d say it makes absolute sense to go onto hormone therapy, if you’re hormone positive, as it should get rid of anything that may be lurking whereas if you don’t have any follow on protection you could put yourself at risk of a recurrence. And the facts are if you get a recurrence, even if it’s local (as I also have) it’s most probable that the disease has gone systemic rather than stayed local.
End of today’s lesson! Must dash now as should be going to work. Good luck with everyone and take care.
Nicky xx

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Oh at work and just logged on phew missed a lot, havent had much time with the lovely trip to Carlilse each day and my lap topin work being fixed!!!

God, your info is good from all of you, I havent done any research Ive just taken the advice they given me as when first got BC I scared myself silly going on sites for info. Im going to have a good read of what you have all said later to see if I can get my head round it.

Angie - didnt realise the bloods bit for rads, I went into it so they mussed have used my last day 10 bloods, chemo nurses did try to get it out before rads but gave up, my arm is hopeless. Is your ONC same as mine, dyson? Seen him once and fine if dont again! Currently see his understudy H Roe.

Nicky & All - thanks for all the info re ovaries and menopause - awaiting my date to get them out. To all, I was told the choice was mine but due to my grandma dying when was 42 of ovarian and a few others further back in the family they did suggest it was the right way to go as being tested for BRAC1 gene, the injections will stop my ovarias working but wouldnt reduce the risk of ovarian cancer, if thats right. I must admit though I havent heard of many women on here where its spread to ovaries. Although dreading Op I would hope its sooner reather than later so I can get on tablets, dont think Im having tamoxafin, think its Arimidex and some bisps (cant spell), which has shown some better results (or so they tell me), maybe I should do more research myself instead of just accepting what they say.

Sometimes I cant believe we talk about things so frankly when at first I was so scared to come on here! Well another embarrasing question, can you take the over the counter stuff for thrush, think Ive got it but not 100% as never had it before, and wondering why now, wonder if anything to do with not having last period?!? Well dennis’s are coming back according to the rads nurses, but why do I have only 2 stray ones at end and a bush forming at the front!! Wish I could say the same for the hair, its sprouting at the side nearly out of the rat but the top must be about 2 mm long if that!!!

Rads update - well seen as my lovely car failed its MOT again! Im on lifts this week which is quite nice as get to catch up - someone emntioned to me that you cant be around kids too much when on rads - anyone know if this is true as my friend and babs (7 weeks) are taking me today!!! Well bless the lovely nurse, I have 8 tattoos, tiny but the one that was mainly visible was so small they keep loosing it, soooo I now have a “L” markes the spot right high up in the middle of my chest in marker with seethrough plasters on and this will continue - typical my first day out of cumbria this weekend and I have a lovely marker patter, scarfs a must I think! Not many side effects yet, slight burning sensation but not sure where and achy ribs but bliss compared to chemo (soz). Trying to get lots of water down but discovered the wine still nice will just probably be drunk on my night away, I’ll be a cheap round!!!

P.s. Lily hope you feeling a bit better now, I could always go to the toilet after eating but now I think I have circles on my legs where I rest my elbows as spend that much time in the loo!!! Hope the dog is okay bless him!! I walked passed one of the postman the other day and he said Hiya, its the phsyco dog!! Poor thing

Happy days (well as much as can be)
xxx

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p.s. soz for long post, got carried away!!!

908

Thanks Nicky, that makes a lot of sense. stuff that blocks receptors is quite acceptrable to me. A friend who was on Tam for many years (she’s been NED for a 10 now) said that she had horrible dryness in a very sensitive place (you all know the one I mean). I take it you didn’t suffer side effects too badly from it then?

It does sound like a good idea if that’s what they’re going to offer me.

I’ve just got the Rad planning appointment letter through. Next Thursday. Still no mention of an appointment with Dyson the onc though, still not going to make a fuss just going to see what happens on Thursday. It was said that they’re just planning on blasting my Right side as that was fairly close to the chest wall and won’t be blasting my left side despite the fact that there was a tumour there too, my records have no information on margins for that side which everyone has taken to mean margins were fine! I did tell them that I want conclusive evidence that that was the case as not having something written down isn’t the same thing… The days of this girl just going along with what she’s told are well and truly over, I’ll be nice though, just firm :wink:

Lily, you’ll have to practice the barbara woodhouse “Quiet” holler, my dog knows it well and also knows he’s going back to sleep as if he doesn’t do a good quiet the OH is sent down the stairs to do the whole “What, where’s the bad guy… nowhere… daft muppet” speech. This tends to result in a very sweet collie dog with his ears back presenting his belly as a sorry I got you up boss :slight_smile:

Lisa: The chemo nurse said I should take a diflucan tablet (the tablet in the canesten duo) when I aws over run, which I did but I warn you now that you should start trying to rebuild the friendly bacteria or it’ll just happen again. The chemo seems to kill the good and the bad bacteria but sods law seems to say the bad stuff recovers fastest.

Have some really good live yogurt if you like yogurt… or if you don’t go get some probiotics from a holland and barret kind of place, acidophilis at least.

This will rebuild the good stuff which will then keep that bad stuff in check.

The rads book I’m reading says it’s rubbish about needing to stay away from people, ie you don’t. Some form of rads (for the prostate mainly) involve leaving a piece of material in place to give a constant dose and in those cases people may need to. This is not that… you are not radioactive… nor will you become a super hero :frowning: Still ask the nurse as I have just finished chemo and who knows what I’ve already forgotten LOL.

Anyway back to work for me too.

Lots of love to you all.

Angie

PS Niki, I’m not bothered by people talking about secondaries at all, don’t want the myself of crouse but that’s a totally different thing… no results from the scan yet then?

909

Lisa forgot to mention about the whole BRCA thing… I believe it means that your at risk of getting ovarian cancer seperately rather than a spread of breast cancer to the ovaries. ie if we have that gene we’re at risk of both :frowning:

No news for me yet but it’s only been 2 months and she did say it can take up to 6 years. But I’ve been tracing my dads family tree and it seems the male side is OK so I now need to just rule out my dads mum’s line… fingers crossed.

910

Hi,
just a quick post for Lisa, go and buy Difflucan one which is a tablet to swallow. Tesco do their own version which is cheaper by a huge amount if one is near. I was told to take 8 so called one off treatments in a row after epi number 4. So if I can take 8 in the middle of chemo you will be fine with one. Also got rads books from hospital this week and they say no problem going near anyone when having rads. You say it die flew can one if you were wondering!!
Lily x

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Wow Nicky you cetainly know how it all works! I was told that I would have tamoxifen to block the oestrogen from my one remaining overy (had the other removed three years ago do to a tumour non canc.) and then after being on Tam for 2 to 3 years would have a blood test to check whether I am post menopausal (I am older being 53) and then I would be put on an aramotise inhibitor to block th oestrogen from my adrenal glands apparently that is where it comes from once the overies are no longer releasing it. So that all falls in line with what you have told us.

Regarding the shivers at night that some of you are experiencing I get that too and I also checked my temp when this happens and it too is low being 35. not sure why that happens unless it is caused by our bodies being low in suger or iron? anyway I have adopted the chicken soup regime so hopefully that may help and thanks for suggesting it.

Lee the Haven Trust is a good website to look at as it has loads of information sheets that can help I haven’t yet but intend to get their DVD on Lympodema. I have been exercising the arm regularly and this has helped. Just have to build up the exercises but it is the only way to deal with it or the arm (s) may become stiffer it is really hard as it hurts but suddenly there is a bit of a break through and a little more mobility returns. I have been told that swimming will help but obviously have to wait until all the treatment is over with. Good luck.

Lily it maybe worth you looking at the Haven Trust website information sheets (you have probably already done it !) but they suggest using Slippery Elm sprinkled over a yogurt to assist with digestive problems may be worth a go.

Angie maybe some aloe vera juice swished around in your mouth may help?

Hope you are all coping o.k. and thanks for the continued source of information and the funny little notes (Lily you should write a book! I’ll buy it!)

love to you all

Bev x

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Sadly Yougurts probably out for Lily like it was me… it’s got live bacteria… still your onc may be more informed about this stuff Lily so it’s really worth asking.

Didn’t think to swish the aloe around the mouth Bev, ta for that.

Is now a good time to point out the my BIL’s book comes out soon… It’s called “overheard” or in full “overheard conversations from the buses, bars and boardrooms of britain” it’s dead funny… you’re all in it… only joking, I wouldn’t do that besides it was already written. However they have an autistic child and we were talking about the stupid things some people say when you tell them stuff like I have cancer or he’s autistic so a couple of the things in the what not to say thread may end up in the sequel… rephrased to protect the innocent… my fave is still “Is it worth thinking about what to buy you for your birthday”… I mean classic!

So next time you’re shouting on the mobile beware someone might be writing it down :wink:

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not joking about the book though if you google for

Overheard-Mark-Love

You’ll find it at amazon :slight_smile: ideal bedtime reading for those sleepless nights and it’s under a tenner, you know you want to. yes I am shameless :slight_smile:

914

Hi,
better late than never, I have decided on my chemo song Angie, which appeals to my wierd sense of humour and fits in well with how I misbehave pretending I am not too old to head bang yet, like today.
I think it is by the Wombats and called ‘Kill the director’ and my dedicated line to chemo drugs goes like this, if anyone doesn’t know how to shout it.
’ I’ve got a friend who makes me feel seasick. What a skill to have. What a skill, So many skills that make her distinctive …’

( warning, do not read on if you own an estate car and like it. I will offend from here on, in a silly mood!)

Well that was brought on by my local Audi garage taking my TT in for a service and giving me a diesel estate car playing radio 2 for the day as a courtesy car!!! OMG OMG !!! It was almost as bad as the African land snail adventure, felt like I should eat currant buns and use a cup and saucer all day. The guy said can you drive a manual or an automatic, yes I said and thought it is going to be a fun car and then he drives up in half a lorry. I must have looked like a cardboard cutout being so short with 36 foot of car behind me. It would not park in any space I visited today or even get in the drive without hanging out over the path. I did ask him if he didn’t have any large families or people with dogs and fishing lines it would suit better and then he left me to get out of a tight parallel parked line of new cars reminding me that I had a £300 excess and would have to pay if I scuffed the tyres. I said well don’t worry I will be sure to drive down the middle of the road all day long. LOL. I got my own back by failing to replace any petrol as advised and road testing itsacceleration power at passing tank topped motorists out for an avoid the rush hour spin. I think he might actually have that exact model because when i got back, he said so how did you like the car? I said well I think if I was a family man who likes gadgets I shou;d have loved it but it doesn’t really meet my on chemotherapy mid life crisis car needs very well. Oh woops did I forget to say I was on chemo?
Roght I think I have got the mean streak that the second chemo gives me, out of my system and will try to be nice!
Lisa love the 2 stray Dennis’ and the bush at the front. Sorry I am chucklng here, you are going to start that whole H thing off again!!! LOL. Seriously though I hope you get through the rads ok. Hope you managed to get rid of the bird in the bush too (joke, think about it). Enjoy the vino, you deserve it and I will send you the dog if you feel sorry for him, he snores loudly too! Angie have you queried the lack of rads to one side, sounds strange. Nicky that was brilliantly explained and I will keep posting back to that as i getthrough to that stage. Thanks.Are you feeling any better yet and how is your hand now. It has been bad for quite a long time now. Do you need to see someone? I still haven’t read up on hormones or Haven site, I just forget it till I get back on here. CMF is making me a real pea brain. Bevy you keep going little and often with the exercises and siggo you need ot get your OH to do them gently and lots of times throughout the day, not just once or twice. it will be worth it. Bevy I have faced some adversity when it comes to medicines for my mouth but slippery elm!! Oh gosh what on earth is that, sounds like a jellied eel!! Not very new age at all so will need considerable encouragement to try something with a name like that. Thank you for thinking of me though.
Big hugs all round and I will hang my head in shame when you all come back on and tell me you drive diesel estates and like radio 2.
Lily x x

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Being rural folk we have a huge old volvo 240 which is longer than a bus it seems… we like to say does our bum look big in this… yep :wink:

But hey we have a dog and lug wood around and things like that, it is NOT a city car so I know where you’re coming from.

Slippery elm is a herbal supplement BTW :wink:

anyway gotta go stick a new drive in this little laptop so hopefully see you later

916

Angie,
hey don’t take this seriously, pure chemo rage I was offloading rather cynically. Had 3 volvo estates when the 4 children were tiny and drove round many places all stuffed in with another row in the back. Past that on silly middle age crisis now!1
Lily x

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Lily, seriously it made me laugh, especially the “meet my on chemotherapy mid life crisis car needs” classic. honest.

Hows the digestive system now? I went down pub last night for first time in ages and a nepalese friend who’s going back to nepal for a few months was having a leaving get together so much whisky was involved and as the night progressed and everyone got all open and chatty there were several people repeatadly telling me what an inspiration I’ve been coping with the chemo… seems they noticed that I refused to miss a walk with the dog and have kept working. I keep trying to tell them that we all do what we have to but it is nice that some people are less scared of the whole idea of cancer treatment now. Some good comes out of bad things doesn’t it?

Anyway, this whole upgrading of laptop is not going too great so had better crack on.

Angie

918

Hi lovely ladies (and gent)

Quick catch up.
I’ve only spent 4 hours at the hospital today as opposed to 6 last time. My results were good, shrinkage of lump (as mentioned before) and bone mets are showing healing, no other spread - hooray. Downside is the onc was concerned about my hand and I’ve got to see a plastic surgeon tomorrow morning! She (and I) thinks the chemo leaked last time - not surprised - so another problem to deal with ho hum. Also I’m on my menopause countdown as had Zoladex today. My bloods showed I was either peri menopausal or menopausal but not conclusive enough not to have further treatment. Am pushing for ablation but will have to see what Head Onc says tomorrow when they both have a chat, then let battle commence if she doesn’t agree!
Enough about me.
Lily - you little rascal! Mid life car and a quick put-you-down for the salesman - nice! Same views as you about diesel ‘tanks’ - sorry Angie (but understand why you need one). Bet you had a lovely day ‘cruising’ - at least I suppose it wasn’t sunny yesterday that would have been the pits - one of the few days this year to have the roof down! Did make me laugh though.
To everyone else, hope life is good (as it can be, at least), can’t believe it’s October already! Lisa - hope rads aren’t getting you down, hang in there and count them down.
Take care

Nicky xx

919

hi girls
you aint seen a bus till you,ve seen ours. Its more like a tank. 3.1 diesel turbo isuzu bighorn…go on laugh. It really is a monster. Bit of an old lady. 1996 i think, but it has 7 seats so serves its purpose. Will add and highly recommend though that i,ve also got a 600cc Honda CBR that i regular use and have taken it many times round Brands Hatch. Have some cool pics of me with knee down and also off the track with me head stuffed in sand arse in air and bike flying through air, but you cant beet it. Tis jills baby as she calls it. She wont let me sell it and we have had many fab times on it. Went out for blast one Sunday early. Took some hardened hairy arsed bikers with us and jill on pillion. When we got home lads said to jill that if she was a bloke she,d have balls of steel. Those were the days (pre johnny) There going to be back though. Be careful though, it can be bad for your health if you come off lol. Hope you all keeping your chins up. Jill got see onc (getting used to your abbreviations) on 13th but i,m hoping there’s not to much to fear there. Take care
Lee

920

Hey don’t apologise for picking on diesel tanks… ours runs on unleaded and if we see a nicy shiny unmuddy 4x4 in the middle of the road we don’t pull over to the edge to let them have the whole thing… oh no we take great pleasure in making them do it so it’s covered in mud by the time it’s past… I think it should be law big cars made for rural life must have mud on them or 10x the road tax. So if you have a chelsea tractor and you see an ancient (and slightly covered in moss) white volvo 240 you’d best tuck yourself in cause we ain’t.

I’m thinking of photographing their faces (they are usually doing 90 until they meet us too you see LOL)