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May Moonbeams

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Re: May Moonbeams

Hello, just been to see foalie, no name yet, but big and beautiful.

I had been feeling a bitter better today but a 20 minute landrover journey and half an hour of my feet as exhausted me and made me feel very sick again. When will this end, it is really crap.
barbara2013
Member

Re: May Moonbeams

Dodo/Jo I wasn't offered a choice because of where my cancer was (behind the nipple) and not having big breasts would have had a dug out volcano with no nipple! But as it turned out more than the one cancer in there and pre-cancer too so mx was inevitable. I did feel relieved to have the whole breast off because I thought it would mean no recurrence and no radio but in fact not the case- still have to have radio to recon breat, axilla and chest wall(?). So it's difficult to say whether advantage or not in your case- I generally tend to go with the docs- not just because they see so much but also stress of choosing....
Dodo14
Member

Re: May Moonbeams

I ordered a lovely sun hat cum bandana from Bohemia headgear (courtesy of Rachel). It arrived today and is great. It has a visor and completely covers so you can't quite tell. Think it will become a favourite - and I can also wear it on top of my wig for an even more natural look.
Aly - take the benefits of no shaving/waxing as a positive - mine are still growing. 😞 My eyebrows and eyelashes seem to be holding in there too which I amvery happy about. Long may it continue.
Barbara - I find myself thinking about surgery all the time. I am havong chemo first in the hope it will shrink making it a lunpectomy rather than a mx but part of me thinks just take it all off so it can't come back. Did anyone opt for an mx or double mx even though this wasn't deemed necessary? I know some people do...
namaste
Member

Re: May Moonbeams

Afternoon moonies....Teresa, I don't feel so lonely now, I didn't realise you're TN too. Not that its' something to be pleased about of course but I do fret sometimes knowing this treatment is 'it' so to speak. I'm in Sussex so being treated at the Sussex County in Brighton.... weekly paclitaxol for 12 weeks 😞 (on a trial)
Anyway, congrats Ann for the new arrival.. yes, we need a name (moonbeam has a ring to it). Glad you're feeling better Karen. Hopefully things will go better from now on now they know your reactions to the treatment.
Hope everyone's managing and enjoying the sunshine if you have any. I'm optimistically waiting for a delivery of sun hats 🙂 xx
barbara2013
Member

Re: May Moonbeams

Hi everyone- hope the new arrival is doing well Ann and welcome back to Karen- sounds like a really long haul in hospital. teresa- I am sure we all feel nervous at different times about different things- does anyone else find themselves getting unhelpfully obsessed with the side-efffects or potential problems of the next stages- raiotherapy, drugs etc as if those of chemo weren't enough to be going on with? In connection with this Aly I listened to Woman's Hour and of course got anxious about the SE's of tamoxifen and the possibility of having to live with them for 10 yers now! It feels like tamoxifen will turn me into something else again that I don't want to be. Yet again it is impossible to predict if you will be one of the poor folk who have trouble with it. I also wind forward to further breast surgery altho that's a way off too. Has anyone else had a reconstructrion? I had LD flap not anticipating rads or chemo so hope the recon survives the rads. But it will definately need work as it is not the right size/shape- Do others shift from one worry to the next or have a way of dealing with it?
On the other hand- beautiful June day here and I def. prefer being able to wear a sunhat on my nearly bald head. Can't face my wig somehow and scarves make me feel much more 'cancer patient' so keep the sun shining!
Love to all
Barbara
Aly1971
Member

Re: May Moonbeams

Ann congratulations - so pleased it all went ok.
Teresa and Zuzy - Im East London so an easy (ish) trip / train ride to Surrey or South London?
No news to report other than by the look of the shower plughole this morning I won't be needing a razor or waxing for a while 😉
Also womens hour this morning had a discussion on the latest news about Tamoxifen for those of you who are going to be taking it post treatment - you should be able to download it on BBC i-player - I haven't listened to it yet but sure it'll be interesting.
Hope anyone have treatment this week is doing ok.
Aly x
Penny47
Member

Re: May Moonbeams

Ann congratulations! Sounds beautiful. Name?
Dodo14
Member

Re: May Moonbeams

Congratulations Ann and glad you are feeling better now.
Thanks for explaining triple -ve Zuzy - what hormone is yours receptive to?
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Re: May Moonbeams

hiya world - I am back on pc !!
Congratulations Ann on being a grandmother, do we have a name ?
I too have lost track with everyone - so apologies if I dont ask everyone specifics at this point I still need to catch up, having a mobile to use while in hospital isnt the easiest (or cheapest!) way of trying to read, I basically posted and read the last message or too
I think everyone one of us are wonderful, we are kicking cancers ****
I think my injection must have been a long lasting one as there has been no further mention of daily doses etc, my lower back was so so painful that night so I knew it was working overtime and so pleased the count had gone from 0.27 to 5 overnight
I am sort of taking it easy today, just pottering around and typically its dull, not venture outside yet as last night I made the decision to get oH to remove the last remaining strands of hair, he said I could cry as much as I needed at the time but be proud from now, I dont have Eleanor Wigby until Friday so having to use scarves etc, which I really do feel that everyone must be staring at me, not dared venture out as yet. As someone put it before I really do now feel like a cancer patient
I will catch up reading all the posts very soon
take care everyone and huuuuugggggeeeee hugs to all
Karen
x
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Re: May Moonbeams

FEC 1 day 6, and time to celebrate with me.

I am a grandmother. 5 days over due, but at 2am a huge bay colt arrived. Sadly I could not be with her but my best friend who is is also my vet held a hoof throughout.
God bless lactulose. - sorry but had to share !!!
Feeling better today. Days 3/4/5 have been rotten.

Good luck to everyone at it today.
Ann xx
Zuzy
Member

Re: May Moonbeams

Teresa, I live in Sutton, just down the road (sort of!) Perhaps we should try to meet up sometime? Although i'm not triple neg I understand your nervousness, you're doing everything you can though and the chemo will be destroying the little blighters!
Dodo, Triple negative tends to be more aggressive than other types, it's very responsive to chemo but not responsive to hormone therapy or herceptin so after surgery/chemo/rads no further treatment available.
Ann, any foal news?
Good luck anyone having treatment today, I really have lost track of everyone!
Xx
Dodo14
Member

Re: May Moonbeams

Karen there are different types of injection and there is a long lasting one so that must be what you had. I have to have 7 days worth of injections days 4-10. By day 9 and 10 I have terrible pain in my thighs, arms and lower back. It does clear with ibuprofen and only lasts a couple of days. They said it is the bone marrow releasing the wbc in a burst.
Rachel thaks for the tip about hats. I have bought a rather nice sunhat which is like a bandana at the back. I may wear it to the concert on Sunday.
Teresa I don't really understand what triple negative means - why does that make you nervous? I like in Hertfordshire so fairly close.
marleypop
Member

Re: May Moonbeams

Glad to see your home Karen, nothing beats being in your own bed x
Jo and Penny, very similar except I'm a triple negative sub-type, which makes me pretty nervous, but I will be here to pass the 5 year mark and many more.. . . .
Anyone of you ladies live in Surrey, I'm being treated at East Surrey Hospital.
Teresa x x
mills1
Member

Re: May Moonbeams

Thanks Rara, will have a look. Glad your home Karen, you must be sooo pleased. think i'll go hat shopping at the weekend, any sugestions? will try clair's and accessorise. Take care all x
Penny47
Member

Re: May Moonbeams

Karen welcome home now keep those feet UP! As for Jessie, my kids always used to ignore me after I had been away. Even when they were in their teens!
Zuzy
Member

Re: May Moonbeams

Karen, i got pain in my bum and thighs after the first one, was agony! Took nurofen and it went away, apparently it shows it's working, just wish they had warned me!
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Re: May Moonbeams

I've only had the one butgot the impression it was a long lasting one, chemo delayed a week, lower dose also
Did you get awful back pain with the injection? My lower back was v painful last night
Karen
X
Dodo14
Member

Re: May Moonbeams

Glad you are back home Karen. Are you getting the injections now?
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Re: May Moonbeams

I'm back home - yeaaaahhh , knotted sheets and spades were not necessary! Blood levels back in normal range!
I totally understand the hair bit, past couple of days I've left trail of hair everywhere, not much left but its so sore , gonna fetch the clippers out later and take control again
Jessie dog despite her escape is sulking and preferring grandma and grandad :(. Oh well I must smell of hospitals
I will write a longer post later
Keep smilingmoonbeams
Karen
C
Dodo14
Member

Re: May Moonbeams

Penny - I was told I would have an ultrasound at half way point by CS but the onc says only when they think sufficient shrinkage. It is a worrying time.
Penny47
Member

Re: May Moonbeams

Jo and Teresa same here for treatment plan. Only I'm ER+ which is why I've been on Letrozole for 6 months before the Chemo. Didn't appreciate the SE's of Letrozole as they creeped up on me...just appreciating them now I'm off it "for the duration". Less joint pain, more energy (must be the steroids), but more migraine (every cloud with a silver lining usually means a little rain must fall...). Oh yes and today I notice my eyelashes are going. That's odd as my hair is still on, as they say. I am dreading going back into the waiting room (for USS and probably also MRI) between cycles 3 and 4 which is what the CS wants to happen. I will feel more secure about it than I did before I started Chemo but am thinking about saving some distracting events or projects for then.
Teresa! Yoghurt Magnums! (or should it be Magna? My husband used to teach classics...) Failed to find them at the Co-op, instead we had lush meringue et fruits rouges flavour and I was really pleased that my Francophone grandchildren could read the wrappers. Things usually taste better in French. The red fruits seemed to be cherries and strawberries and they were real. So I got some of my 5 a day....Glad I'm getting my taste back a bit.
Aly-I had a look at the cost of music festivals and decided to give it a miss. I will listen to clips from WOMAD on Radio 3 outdoors and pretend I'm there. Next year maybe. Meanwhile, we have put up a tent on the field next door and my grandchildren and parents will be camping there tomorrow for the rest of the week! As for me I am deeply engrossed in sorting out all my mother's old photograph collection and having a laugh at it. Very distracting and fun.
Rara
Member

Re: May Moonbeams

Hi Sarah,
bohemia headwear do baker boy hats. I have ordered some stuff from them and its all good so far but I havent tried bb hats yet!
Glad some of us are up to exercise today Dodo! good for you. I hardly slept a wink last night as remaining hair seems determined to make its departure as irritatingly as possible.....it's like I can feel every strand falling Out! I want to shave it but as only day 6 I am not sure using clippers today?!
Have a good day and hope all moonbeams enjoy some sunshine.
x
Dodo14
Member

Re: May Moonbeams

FEC T 2/6 Day 14
Teresa - We are on very similar treatment plans. I too have grade 3 ductal and am having chemoto try and shrink it and avoid a mx. I was initially very nervous about that order of things but have relaxed more now. It seemed to me best to get rid asap as it hadn't spread but I understand their reasons. I too will then have suregry followed by radiotherapy, but I also need herceptin now as am HER2 +. That will start with treatment 4 or 5 apparently and last for about a year! Also I notice we are both 42 and have a daughter so very similar indeed!
Zuzy - Great news about wig. I have worn mine a few times out now but still feel very conscious about it.
Penny - Ouch that doesn't sound pleasant at all.
Feeling pretty good today - am going to attempt half hour of exercise now....wish me luck.
mills1
Member

Re: May Moonbeams

Sand paper? try a bunch a grapes lol all you ladies are doing really well. im having a crisis about my hair. thoought i would be fine with it but look like a skinhead and know it will be worse when bald. i can't seem to find anything i like to cover head without looking like an extra from pirates of C, fortune teller or carmen maranda. anyone know where i could try and find some baker boy hats? All the best to all of you and i will read threads better and catch up later, Sarah x
Rara
Member

Re: May Moonbeams

Sorry I missed lots of posts whilst writing mine!
zuzy, so glad for you re wiggy.
tereasa, I am grade 3 aggressive too but had ops first? Weird how differently hospitals treat us!
penny I hate to ask re sandpaper! Hope it eases.
and poor Marie, I hated the diarrhoea but think you can take Imodium
xx
Rara
Member

Re: May Moonbeams

Hi ladies, FEC -T 2/6 day 5
( tired and grumpy and can't be bothered with chores! )
Namaste i am sorry you are one the weekly thing. It sounds tough. I am sending you a cybe hug! Wish I could help. I don't actually understand triple negative myself but I believe there is an active topic about it on here some where?
Tereasa, great news!
Karen I have 7 days gsf after each cycle. Its easier then you think. Boosts your white blood cells I believe.
Dodo and Aly, its great to have something to look forward to. Have lots of fun!
Marie, I am almost bald now. . . I shall post photo when it's all gone. We will look like sisters! Hope you are ok?
love to all
Rachel x
marleypop
Member

Re: May Moonbeams

Ps. . Penny
Try yogurt fresh Magnums, absolute heaven x x
marleypop
Member

Re: May Moonbeams

Hi Jo
Similar treatment plan as you, for grade 3 FEC T chemo first in the hope to shrink as much as possible.
Followed by lumpectomy, with clearance of the nodes. . . .then followed by radiotherapy. Taking each step as it comes. . .monitoring it as it goes. What's your treatment plan?
Zuzy, well done you...must of been a bit nervous wearing your wig to work for the first time.
Very pleased thank you Penny....love your expression 'sandpaper in the knickers feeling.'
Teresa x
nanniereeree
Member

Re: May Moonbeams

Oh penny not had the sandpaper feeling! today I've welcomed the runs hope it's the antibiotics or the fruit I've eaten, and not my colitis playing up.
Marie
Penny47
Member

Re: May Moonbeams

Teresa Sounds like good news- I hope you are pleased. We have enough on our plates without having to sweat out test results.
Jo and Karen - I expect we are all going to want some of that G-CSF before we are through!
FEC-T 1/6 Day (ummm...)13- Tomorrow I am going shopping for the first time since my treatment. I've been doing the on-line ordering from Tesco and sending people with baskets out to run errands for me but tomorrow it is Retail Therapy time, With ED who's here with brood. Might buy us a round of Magnums. (chocolate not bubbly- the children are all under eight). Latest SE is the sandpaper in the knickers feeling. Not nice, but Zinc and Castor oil cream is working really well on that.
Zuzy
Member

Re: May Moonbeams

evening moonbeams, wore wig to work for the first time today and got lots of nice comments (and not just from people who know!) so feeling more confident about it now!
karen, , I'm having these too, I had 2 before my 2nd chemo as bloods were low then had them days 6-10 after no 2 to hopefully make sure they are ok for no 3. They are not painful, I had them in my stomach, they did want me to do them myself but hate needles so district nurse came every day to do them!
Theresa, great news
Anne, any sign of the goal yet?!
xxx
Dodo14
Member

Re: May Moonbeams

Great news Teresa. It is a worrying wait but such a relief when they confirm no spread. x
I notice you were diagnosed 1st May - do I take it that you are having chemo before surgery like me?
marleypop
Member

Re: May Moonbeams

Hi ladies,
Never have I been so anxious...Been getting myself all hot and bothered..
The results have come back as no spread from the scans, feeling very relieved, thank you for asking Jo x
Ladies have a good evening, who's due another dose this week?
Teresa x x
namaste
Member

Re: May Moonbeams

Evening moonies
Paclitaxol - 2/12 day 7
Coping ok with the side effects... still have my hair 🙂 But struggling a bit with the whole weekly thing. Probably because its another dose in the morning? I don't know, it's good that the doses are lower but weekly seems like a lot right now. Guess I'm very tired.
Taken multi vitamins this week but I think they'll take a while to kick in (if they make any difference atall). I've put on weight and just feeling a bit bleurghhhh tbh 😞
Sometimes the whole triple negative thing gets to me, seems a bit isolating in some ways..
Anyway, hope you're feeling better Anne and you're not missing the sun too much whilst confined Karen....
Will be back tomorrow after dose number 3 xx
Dodo14
Member

Re: May Moonbeams

Hi Karen
Yes the filigrastin injecgtions I have days 4-10 are G-CSF. They help produce wbc's. Seem to work well.
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Re: May Moonbeams

Just a quicky - anyone had that G-CSF or something like that ?
Karen
Dodo14
Member

Re: May Moonbeams

Teresa how did your hospital appointment go today?
Dodo14
Member

Re: May Moonbeams

Thanks for your encouragement Aly and Mills - As long as I feel ok and it is not pouring with rain I think I will go for it. Be shattered on Monday morning though and hospital appointment at 10am!
nanniereeree
Member

Re: May Moonbeams

Ann, days 5 6 7 were my bad days ths time no energy whatsoever but now I'm feeling good but have put weight on so hip is hurting 😞
Marie
Aly1971
Member

Re: May Moonbeams

Hi Dodo / Jo - i would definitely go if your feeling up to it - mine is also an outside gig in Finsbury Park, I will be on day 16, the forecast is good so I'm going to take it easy - lay out a picnic blanket and not get too close to the front - I've been taking public transport throughout my first cylcle, just using LOTS of anitbac hand gel and not getting near to anyone whose coughing so I figure its just the same. I will be taking some anitbac wipes and avoiding the loos!!
My second event which will fall 2 days before my next dose is a festival - I'm only going for one night, have got a wristband for posh loo's that get cleaned after every go and am camping in a very posh 'tent' with its own bed & electricity (I believe they call it glamping!!)
I spoke to my onc about both of the above and she was all for it as long as I was extra careful about hygene and didn't go if it was pouring down with rain. She said as long as we use our common sense and of course don't go if feeling at all unwell why not - it can only lift the spirits.
xx
mills1
Member

Re: May Moonbeams

Hi dodo14 AKA Jo , RE that concert: if it was me,I'd GO GO GO xx good luck
Dodo14
Member

Re: May Moonbeams

Ann - I find I am at my most tired between days 6-9 as that is when red blood cells are at their lowest point. From day 10 I tend to pick up but I am more tired than usual pretty much most of the cycle. You may not be the same of course but don't worry if the energy levels don't come back too soon.
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Re: May Moonbeams

Thank you Marie, the mind is willing but the body does not keep up. I wondered what fatigue actually meant and I think I am finding out. Does it pass as I get past day 5/6 ? When do the drugs actually leave our bodies ?
Ann
nanniereeree
Member

Re: May Moonbeams

Ann glad you are feeling better this morning. Hope that foal soon makes an appearance lol
Marie
Dodo14
Member

Re: May Moonbeams

FECT- T 2/6 Day 13
Teresa - I have had a runny nose and possible sore throat around days 5-8 in both cycles but no eye wateringor cough. I think mine was Se and not a cold but who knows? The onc told me last time I saw her that they are not worried about colds which are viral, more the bacterial deep rooted infections. As long as temperature ok and feel alright think should be fine but always check.
I hate this constant is it/isn't it state that I appear to be in , looking out for problems and being scared of every single twinge too. Can't wait for it to end.
Aly - really interested in your concert/gig plans. I too have tickets for an outdoor concert this Sunday - will be day 19 of cycle - and am wondering whether to go or not. Lots of people but it is outside and bloods on day 20 of last cycle were normal. Advice anyne?
Ann - Glad you are feeling a bit better today. Hope it lasts.
Have a good week everyone.
Jo
x
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Re: May Moonbeams

Thank you Aly, I have taken two this morning and will continue, prevention better than cure I think. Woken this morning feeling a lot better thank goodness. A little exercise could be possible today.
Hope others are feeling better today as well.
marleypop
Member

Re: May Moonbeams

Thanks Penny will do.
Lucky temp is fine, no concerns there. . .going to hospital tomorrow for scan results, will check with BNC nurse.
Looking forward to days without this worrying about the slightest thing rubbish. . .and freaking out if I twitch where I've never twitched before.
Teresa x
Penny47
Member

Re: May Moonbeams

Teresa When I rang the helpline with raised temp the first thing the nurse asked me was "are you coldy"? I must have sounded coldy with my running nose. I don't know if it could be a side effect but when in doubt ring your helpline. And keep taking your temp. Regularly.
marleypop
Member

Re: May Moonbeams

Ok ladies, need some info....suffering from the most awful cold. Nose and eyes streaming, sore throat and cough...is it just a cold or S E.
Just wanted to ask has anyone else suffered and would it be ok to take some night nurse or cough medicine. Don't want it to upset the chemo.
Heading off for early night to try and get some sleep, hate colds at the best of times, but could well do without right now.
Thank you
Teresa x
Aly1971
Member

Re: May Moonbeams

Hi Ann I finished my steriods the same time as you and was told to expect a 'crash' for the following couple of days - tiredness, emotional and maybe a little depressed, I definitely felt very tired on days 5&6 but didn't really get any of the other symptons but we are all different and don't be worried / thrown by it if you do feel low. I felt nauseous right up till day 8 but it got a little better each day and the Metrocolpromide definitely helped - you can tailor it to your needs taking either 1 or 2 tablets depending on how bad you feel, I found I needed 2 in the morning and then dropped to 1 at lunch and 1 in the evening. My Dr said to keep taking them as long as needed which for me was around day 6.
x