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May Moonbeams

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Re: May Moonbeams

hi - have just found out that i will be having chemo probably in may.My first appointment with the onc is on the 30.4. Both me and my hubby are a little shocked as we thought that having had half of my breast of and being told that i would probably only need rads would mean that everything would be over by summer but on my last visit to the clinic we were informed i would need chemo further surgery rads and tamoxifan! So i have been a little dazed since then, and my biggest obsession is, at the mo "to wig or not to wig" The nausea i am expecting it to be bad as i always have a reaction to drugs but will cope (hopefully)
Any advise will be welcomed as i dont know anyone who has been through this and i am getting very confused with the terms!
Good luck to all x
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Re: May Moonbeams

Got my lovely wig it really does look great and feels almost normal. So came away feeling pleased. Also spoke to my nurse on the way out as the salon is in the hospital. See said they are trying to get my MRI asap as they still want to start my chemo next week. Spoke about the ultrasound results and she let slip that she thinks I have nothing to worry about. Its because I was dx with BC they need CLARIFICATION which is a word they keep using if I didn't have BC they would probably have left it at the ultra sound.So who knows what to think. Hopefully will get an appointment over the weekend. Am I correct in thinking that if your tumour is a grade 4 and nodes infected then you run the risk of the the cancer spreading or is that just a myth. I was a grade 3 4 out of 18 nodes infected with clear margins from the chest wall because I had an mx and node clearance.The doctors were sure that the scans would come back fine and I had nothing to worry about because the mx went well. I bought some Baches rescue remedy not sure its working yet will have to give it time.
Angela xxx
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Re: May Moonbeams

Hi Marie, Great news, you have your chemo date. Will be thinking of you and sending good vibes.
Just listening to I will survive by Gloria Gaynor. I think this should be our song.

Janet xx
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Re: May Moonbeams

Hi Deborah,

I'm also HER2 positive and on herceptin. As Pammy says Herceptin is only licenced in primary BC cases if used with chemo. I was shown my percentage chances of survival etc. My onco used the Adjuvant! website, which is not available to the general public.
I'm on TCH (as are 2 other ladies at my hospital with HER2 pos) on the grounds that Herceptin is hard on the heart and as FEC is also harsh on the heart, you can't have herceptin at the same time as FEC. It seems better all round to be honest because we all started the Herceptin on cycle 1 rather than waiting till cycle 4, therefore "saving" ourselves a couple of months of treatment. I suppose every oncologist has different methods.
Linda xx
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Re: May Moonbeams

Well ladies thats me sorted out start chemo thurs 2nd may so I'm sorted only EC because of other illnesses.
Elliedog you can never over react with this...
Redcap try not to get upset tho have said all the way through this that I'm not wasting energy on getting upset as I need all my energy to fight this evil thing!
Have a lovely weekend everyone
Marie xxxx
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Re: May Moonbeams

Thank you Angela, It's getting so close now and everything seems frightening until we actually start it.
You're right, we are having chemo for our benefit and to make us well. Positive thoughts caughtx
Have a great day. Janet x
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Re: May Moonbeams

Thanks Melrose15 and Redcap. I will certainly try that remedy. Redcap try not to get to down although I know where your coming from. I have been looking at the chemo as my security net it will help to stop it coming back. Try to be positive, giving positive thoughts right back at you. Angela x
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Re: May Moonbeams

Hi Elliedog, You have been through it lately, sending positive thoughts and hugs your way.
Melrose, I always have a bottle of Bachs Rescue Remedy in my bag, as do most of the girls in work. We have a laugh about it when we all pull the bottles out to recommend it to everyone.
Feeling fed up and tearful this morning with waiting for appointments (Onc on Tuesday) and the anticipation of chemo.
Hugs
Janet x
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Re: May Moonbeams

*has tried (whoops predicted text!)
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Re: May Moonbeams

Don't know if anyone else htrue dies Bach rescue remedy but its very good at calming and helping with the positive energy. I would recommend it. Give it a try Elliedog xx
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Re: May Moonbeams

Thanks Melrose. It certainly is distressing and I do know I am over reacting but part I me thinks you just never know. The nurse said the same that the trials demand a full picture and it is better to get the scans out of the way. She also said that if the consultant said it is indicating hemangiomas and in his opinion is doesn't think it is related to my BC then they don't very often put there necks on the line, if he thought it was cancer they usually just go quiet. So eneryone is reasuring me but I could do without this MRI. Got to go now the boys have got to go to school. I will keep you updated. Keep well. Angela xx
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Re: May Moonbeams

Morning Elliedog
They are really putting you through it aren't they? I found all the tests they did after my Dix distressing, I even passed out! So can understand how stressful it must be. I suppose there's so much going on in our bodies that we never become aware of. We just go through life, experience the odd ache and pain with no real explanation.
Try not read too much in to things a lot of thesties and are routine especially if you are going on a trail as they have to have a full picture of you before they start so they can compare it down he line. My dad has had cancer for 9 years and has been on numerous trails. He's on first name terms with all the staff in the scanningdepartments!!
Who are you going with to your wig fitting? Hopefully you're taking a friend and incorporating lunch. Imagine what fun you'll have. What colour and style have you in mind? I've always wondered what I'd look like blond 😉
Let us know how you get on xxx
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Re: May Moonbeams

Hi everyone. Got back from the hospital yesterday after an unexpected ultrasound on my liver. The consultant has found something that he believe to be in is opinion a Hemangiomas non cancerous usually go un detected and does not normally require treatment. In his report he said all its characteristisc were suggesting that is what it is. However because I have BC they have to 100% sure so he is sending me for a MRI. So I am now scare stiff even though they say it is not indicating cancer. But they could be wrong which to me is why I am having an MRI. Can't bare much more of this. Got a wig fitting this morning not sure if I can go.xx
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Re: May Moonbeams

Hi Deborah, good to see you again!! Xx
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Re: May Moonbeams

Just a bit of info I am her2 positive and chemotherapy is always given with herceptin as this is the licence agreement in this country .
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Re: May Moonbeams

Cazd-No not yet but they said not long. We're still working throught the MRI scan results-that tumour is starting to scatter and get bigger and there is a tiny lump on the other side whch might be nothing but needs to be biopsied, so that just strengthens the case for an early chemo- Bring it On, I say. I've had morning nausea (not actually vomited yet) on Letrozole which I see as a dress rehearsal! Just starting to knit a sleep cap, hope the pattern works out.
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Re: May Moonbeams

Hello Penny and Zuzy too (glad that you're finally on the way too). Your posts didn't show up for me until after I had posted.
x
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Re: May Moonbeams

Hello Moonbeams and welcome to Angela (I'm defo going to have to do myself a list to keep track of everyone).
I saw the Oncologist who was very no-nonsense. I didn't get the info on % benefit that I was expecting, she said that there aren't stats for HER2+. I was a bit surprised, but didn't push it, as she was very clearly recommending chemo anyway as I'm Grade 3 and positive lymph nodes. I must say that when I saw it all written out - Chemo, Herceptin, Rads, Tamoxifen, it was a bit daunting.
She wouldn't let me consent then and there, so I'm going back to sign forms first thing tomorrow. I got my bloods done, and they're going to do their best to get me started next week.
As I'm having Herceptin, I've got to have a MUGA test - which I think measures blood flow through the heart. Should be straightforward.
Oh, I'm having FEC-T. Anyone else on that?

I'm so relieved to be getting on with it that it has taken some of the anxiety away.

I also asked about a line or portacath, which she agreed to book in, but its unlikely to happen before my first cycle.

Deborah
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Re: May Moonbeams

Hi all, I'm another who was expecting to be in April but it turns out that i'll start on 1 May so hoping I can join you lovely ladies instead. I'm having 6 cycles of FEC-T. Was confirmed would need chemo on 5 April so have had loads of time to get prepared and now just want to get on with it! Looking forward to getting to know you all over the next few months. xx
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Re: May Moonbeams

Hi penny you are very welcome. full moon tonight ah that might explain my mentalness all day lol.
Have you got a date for your oncology appt yet xx caz
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Re: May Moonbeams

Here's another May moonbeam, I guess as I have to see oncologist to start chemo in next couple of weeks, so if they get it all together I will start next month...FYI the moon is full tonight. 😉
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Re: May Moonbeams

Marie

You have to do what you feel is best for you. The thought of rads scares me more than chemo, and I've more or less decided against it for me. My mx was on left side, and I know rads can leave you with a slightly higher chance of heart disease later on. Also, I have a lung disease (Bronchiectasis with psudomonas colonies) and I'm afraid rads might make that worse too. But then I'm a wuss, and admire all you brave ladies so much.

All the best
Kath xxx
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Re: May Moonbeams

Hi everyone,
Marie glad you are feeling bit better about it ,and hopefully if you can discuss it some more with the nurse you will feel better still ,hope you enjoy the chinese tonight nothing like a night out to take you away from it all for a few hrs
Deborah hope your appt went well for you today and no surprises
Elliedog welcome on board sorry you find yourself here but hopefully well all get through it together.Will your treatment follow the usual course once every 3 wks .That is interesting about the coldcap hadnt heard that before makes me feel even better now as our hosp doesnt offer it either
Got another brown letter through the door ,as soon as i hear that i can feel the anxiety ratch up a notch ,another scan date i will be radioactive at this rate then will panic until i get results .This journey really is a rollercoaster for us all xxx lots of love caz
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Re: May Moonbeams

HI all, the chemo nurse has rang and asked me to go in to see her in the morning to sort out my treatment as she heard what was going on. So hopefully I will feel a bit better again tomorrow . Off out tonight with the girls from work Chinese buffet may be the last one before treatment so make sure I enjoy it
Thanks everyone for kind words
bye for now
Mariexxxx
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Re: May Moonbeams

Good to have you on board Ellliedog, shame about the reason we are all on here but we'lll get through it.
Marie, what ever decision you make will be right for you. Big hugs coming your way.

Hugs to all
Janet x
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Re: May Moonbeams

Welcome Elliedog. I had my mx and ANC a week ago so am hoping I am a May Moonbeam. Like you just want to get started and move on. However definitely not fit enough yet. Have ap on 2nd so willfind out then. Seems like you will be one of the first Moonbeans so we'll be following your lead.
Lucy when did you have your mx?
Marie, glad you're feeling more positive today. You were put in a hardposition but I do believe we have to everything in our power to beat this bars***d. Keep strong.
Alex, what else is going in your Chemo prep bag?? Xx
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Re: May Moonbeams

Hi Everyone. I would really like to join the May moonbeams. Just come back from the hospital having lots of additional tests because I am joining a trial. Got to go back again this afternoon for my ultrasound on my leg because the ct scan wasn't clear (so after going into a mad panic phone my lovely nurse) I was then told that the problem was beniegn non cancerous and had nothing to worry about is just for the trials information. So onwards and upwards. I'm looking at starting treatment next Thursday or Friday. The hospital is being really good because I go to Scotland in May for a week so they are trying to time it around my break. I agree with everyone the sickness is really bothering me I am a big baby when I feel sick or be sick so any helpful tips are gratefully recieved. I thought I might try wearing a cold cap but my onc has said they do not allow them at the hospital because chemo treats the hole body including the head and their is the possibility that the cap will stop the chemo getting through. So tommorrow im of to have my wig fitting and hat and scarve shopping. Part of me can't wait to get started (is that wrong) because I just see this treatment as prevention, stopping the cancer coming back which is a good thing. I am 43, had a right breast mx about 5 weeks ago, the mx was my choice because I didn't want to take the chance of not getting clear margins (which was a good choice because they found 3 more non cancerous lumps). I hope I can be of some help through this next step in treatment although I am sure I will be asking for everyones advice lots and lots. I hope we can all stay positive as much as we can and at the end of September the chemo will be behind us.
Lots of Luck to everyone
Angela
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Re: May Moonbeams

Good luck ladies, I will be in the jumping June juliettes or jolly july jesters (yes I haven't slept much after my mx) but I wish you all the best for your sessions and hope you are all ok x
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Re: May Moonbeams

I had made my mind up but hubby spoke to his Dr at his works ( he works with chemicals so they have regular blood tests ) and he said if it was his wife he would advise her to have it so that's made me even more certain that I'm doing the right thing after all it is only 3 months.
i really feel that she glad not read my notes properly to not know about my adrenal problem that I have had been treated for for the latest 30 years at the same hospital says it to me but never mind onwards and upwards so they say...
Feel so much better today.
Marie
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Re: May Moonbeams

Hi moonbeams, been back to work for a whole day today, so catching up with you all again.
Marie, I really feel for you, it's a hard decision to make, but I think I'd go along with what you've decided, as you say you will have thrown everything you can at it. I was asked if I wanted to take part in a trial where some of us who might not necessarily need chemo aren't given it, but it would have delayed everthing by another four weeks whilst a computer decided my fate and as I had three affected lymph nodes I'm pretty sure they would have gone with the chemo anyway, so I declined and signed up for chemo.
My arms doing well re cording, it's just when i go for that extra stretch now when I feel it. Work again tomorrow and per assessment appointment on Fri morning. I've bought my thermometer, anti sickness bands so I'm all ready for neseethes day.

best wishes Alex.
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Re: May Moonbeams

Hello Marie, I know that BCC can sometimes put people in touch with women who've faced various decisions - not to tell you what to do but just to talk through and who knows what you're facing. Not sure how you go about it, but the helpline will know. I also had a very quick and helpful response from their email the nurse service. Just another option for chatting things through.

I'll be thinking of you. Let us know what you decide.

Deborah x
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Re: May Moonbeams

tonight....
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Re: May Moonbeams

Think il'l be tossing and turning to it 😞
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Re: May Moonbeams

Oh Marie I do feel for you as we have to fight this 100% and they are giving you decisions that are hard to make. If only we could see into the future. I think you should go with your gut as caz said. You'll be well looked after whatever decision you make.
Caz glad the cording has improved. I'm back Friday to have more fluid drained. Managed a continued 4 his sleep last night so things are improving!
Thanks ladies for checking in with the Moonbeams. All help and advice welcime xx
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Re: May Moonbeams

Hi Panacea,
Iknow but if I don't go for it there could be a lot of what ifs in years to come. I have till my appt to decide if I don't want it I am going to ring my BC nurses in the morning see if they can help?
Marie
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Re: May Moonbeams

Hello Moonbreams
Caz glad to hear the cording has improved, sounds a bit like mine which moved down arm and has now almost gone, so fingers crossed for you.

Marie, what a tough position to be put in. When do you have to decide? Do you have someone at home to talk it through with? Is your BCN being supportive?

Hello to everyone popping in, its great to hear that you're all hanging in there. Kath have you written any more poems? I haven't looked in on the AAAs lately.
Wishing everyone a restful night.

Deborah
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Re: May Moonbeams

Marie its sorted then thats your choice youll give it a go and then youll always know you threw everything at it
you go girl xx
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Re: May Moonbeams

marie there is a thread about early days of radiotherapy not far from our thread there is a lady on there jcj if u click on her she refused chemo after was offered 5% and had zoladex maybe you could send her a private message xx caz
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Re: May Moonbeams

To have chemo
Marie
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Re: May Moonbeams

Marie ,dont let your head explode you def wont have chemo then!!
What about starting a new thread about it?
i know there are some people on zoladex on here get some different opinions or would that just make it worse?
If the oncologist said marie you have to decide now what would your gut instinct be.
Will be thinking about you xx caz
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Re: May Moonbeams

Hi cazd,
hey are making me an appt for chemo if I decide not to have it I have to let them know but I'm like you I need to do everything to stop it spreading/ coming back....
she said if the first dose affected my other conditions they would then stop it and give me tamoxifen and zoladex to stop my ovaries working....
feel like my head is going to explode......
Marie
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Re: May Moonbeams

Thanks for popping in kath and gill we are all in the waiting room hope you are both well xx caz
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Re: May Moonbeams

Ah marie im so sorry that youve been left in this position its rubbish you just want to go and be told this is what we suggest do you agree to it.
All i can speak for is myself. i decided that if they offered it i was taking it .Iunderstand your circumstances are different and you will worry about damaging your adrenal glands or causing a flare up in the ulcerative colitis.
Is it possible to just take it step by step and try the first dose 2 see how you go they will be monitoring your bloods closely and you will know bowelwise if you can cope with it .
What about your hubby and family how do they feel about it all ?,when do you have to let onco know?
Marie im sorry you will have a rotten few days ahead of you i hope you get some sleep tonight and when you wake up in the morning hopefully you will have decided and made a choice you feel comfortable with, thinking about you xxx caz
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Re: May Moonbeams

Just popping in from February Valentines having noticed you've gone for "Moonbeams". Lovely name. May you all shine brightly.
Wishing you all the best.

Gill
x
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Re: May Moonbeams

Just to let you know, re time lapse between surgery results and chemo starting. I have no idea what the average is, but my mx was 12th December 2012 but didn't start chemo until 5th February. There were times when I thought it would never happen, but it did. Only two more left for me now, it flies by.
Kath xx
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Re: May Moonbeams

Hi ladies, just back from appt aams don't know what to do on the predict site that they use it is a 5.2% over 10 years which is borderline as to chemo and because i have Ulcerative colitis and congenital adrenal hyperplasia it will be EC over 3 mths but if I decide against it she won't push me to have it ....
Why can't it be black and white I am .2 over the cut off zone but the decision is mine ...
Do I want to think in a few years if it comes back what if?
sory needed to vent any advice there is a family history..
Marie
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Re: May Moonbeams

Hi everyone,hope you are all keeping well,
Marie hope you went ok with appt and no shocks or surprises just forward to the next step as soon as possible.
Saw the physio yesterday she did lot of poking and prodding which was really sore but worth it ,had the hosp towel jammed in my mouth to stifle the screams so hope it was a clean one lol
She felt a pop and has def released part of the cording , just sore from elbow to wrist now .she did say if it doesnt release completely at the time of my second surgery we can let the surgeon know and he often will remove it or release it so all good on that front.
I think my frustration now has come from the fact that so far things have run well on NHS diagnosis 12th march,op 27th march results 10 days later appt with oncologist following wk ,know my treatment plan and then suddenly slow down because the chemo unit is so busy. just annoying that i know its down to staffing levels .
However am settling down a bit and hopefully first FEC 14th may if not then may just have mini meltdown .
Good luck for thurs deborah will be thinking about you xx caz
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Re: May Moonbeams

Good Morning ladies,
Melrose 15
My Onc appointment will be 6 weeks after my op. I got the results of the op back 2 weeks later. Wasn't expecting to have chemo, so was a bit shocked.
Nanniereeree
Look forward to seeing how you get on. Hope you feel calm x
Group hug to all
Janet xxx
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Re: May Moonbeams

Melrose 15,
I had my op 4 weeks ago last Monday so I've waited 3 weeks since I got my results on the 7 th April
Marie x
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Re: May Moonbeams

Hello ladies,
Just popped I from February Valentines to wish you all a speedy recovery and tell you that you are all brave and wonderful and about to embark on a weird, sometimes frightening but dooable road trip.
Some of you have mentioned cording....... It seems to be something that gets overlooked but, after one of my surgeries, I developed a sinuous and very painful tendon-like cord from high up under my left breast to my bottom rib. I was advised to gently stretch and massage it daily. I did just that and one day it went ping! Felt like a rubber band snapping and all the pain went away. My phisio friend said this sometimes happens but even if they don't 'ping' stretching them is helpful.
Good luck and cyber hugs to you all.
MMM x