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May 2017 chemo starters

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Re: May 2017 chemo starters

Mai my periods come back regular now roughly every 21 days (until this one?) I had irregular periods since maybe January but then lengthier more normal and regular since May or June. They haven’t mentioned checking my levels but I’m assuming that because of my periods and that I haven’t really had any hot flushes since January I maybe producing eastrogen and stuff even though on tamoxafen?
I am scared of how my life will be after and if I’m able to cope with the side affects and no HRT but I’m also terrified not to so I will do it no backing out.
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Re: May 2017 chemo starters

Thanks Ladies im bloody over the moon it wasn't mets as i know some are not as lucky i have an app with a neuro surgeon on 2nd Oct to discuss surgery so i have a bit of time to get my head round it!! It has put a massive spanner in the works re my plans for looking for a new job i just want to not be a patient πŸ˜” but i will do it don't want to end up with mobility problems which without intervention is the result of this type of thing
Jay back to the GP i bet this feels weird i wonder why some trusts do this but at the same time they will never neglet any concerns you have my trust used to have regular onc apps for 10 years now we see them yearly for 5
If you are comfortable with no recon jay don't have one its a very personal thing for you
Community Champion

Re: May 2017 chemo starters

Mishy - I repeat what others have already said - thank goodness no spine mets but sad to hear you've more surgery ahead of you.

 

Wolfee - so sorry for the decisions you're having to make.  Whatever you decide and whatever happens you know us May Warriors are right behind you - supporting you all the way my lovely x

 

Mai - interesting.  Do you have an appointment to see surgeon to discuss recon?  I'm not seeing my surgeon until March and then he's going to refer me to a recon specialist depending on my thoughts.  Have you made any decisions yet?  I'm still unsure whether to have any recon.  Most of the time I'm happy as I am - but every now and again I wish I could just put on any bra or bra top and not have to spend time adjusting myself (if you know what I mean) - also I do find the implant heavy and I'm sure that makes me achey at times especially after a long walk!  

 

I'm currently in the big wide world with very little support harness and I'm not quite sure how I feel about it all!  I'm just under the GP now and it feels......strange.....!

 

 

Community Champion

Re: May 2017 chemo starters

Mishy, glad it's not spine mets but not nice that you have to go through more treatment to fix it.  Glad you don't have to try juggling a job around all of this as well.  Xxx

 

Wolfee, my ovaries are staying in at the moment as they are monitoring my menopausal status for now,  I haven't had a period since June 2017 and if they don't reappear by June 2019 then they consider me post menopausal and therefore ovaries inactive anyway so no point in removing them.  I had  blood tests to check menopausal status and it confirmed menopausal stats,  Have you had all of these checks and discussions with a gynocologist?? Xxx

 

My recontruction leaflet arrived a couple of days ago and I've got to read it before seeing surgeon so I'm fully aware of all options.  On scanning it it's looks like implants only = 2 lots of surgery 3 months apart due to expander but diep flap = 2 lots of surgery in a 5 hour session for tissue transfer.  

 

Hi Shi, I look forward to seeing you later today!  πŸ’— πŸ’—πŸ˜πŸ˜˜πŸ˜

Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Wolfee hope you’ve been able to discuss your questions with team β€οΈβ€οΈπŸ’•πŸ’•βœ¨βœ¨Shi xx
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Re: May 2017 chemo starters

Wolfee re the ovaries have a good think and maybe arrange an appointment to have a chat to discuss all your concerns its a big thing fir you don't apologise for your rant i was a right okd mess earlier today then i thought howay man mishy you did the worst thing ever already you did bc you can def do this i hope you come to tge right decision for you πŸ’–
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Re: May 2017 chemo starters

Thanks Shi Wolfee not going to lie i cried with relief to hear it wasn't mets and i know the other stuff as painful as it is will be rectified with an op just need to be extra careful in the meantime can't lift anything carry shopping bags and no jumping around or jerky neck movements in the meantime haha you are totally right this would have been the end of the world to me before bc but now its like oh well 😨 and yeah the redundancy was a blessing in disguise wolfee i hope your back is ok too im really taken back by my results wasn't expecting it so I hope yours aee good i literally can't understand how its happened i hope chemo and rads hasnt weekend my bones 😨 im thinking of asking about the bone strengthening stuff some people are getting to prevent mets as my bones are clearly not very strong!!!!
Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Wolfee 😘😘if you are having 2nd thoughts about op, speak to your team to say you are unsure and would it be possible to delay? It’s a massive decision you are make by and one you have to be a million % happy to make. There is the someone like me option in here that you’ll could try, might help you. Sending you big β€οΈβ€οΈβ€οΈπŸ’•πŸ’•βœ¨βœ¨βœ¨shi xx
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Re: May 2017 chemo starters

Mishy18 god what a mess the spine stuff sounds but I suppose something that would have once sounded awful and to most people sounds ok 2 is now because as long as it isn’t the C back it’s good news πŸ‘ but what a **bleep** 2 deal with after everything else. You can do this and yeah sounds like the redundancy was a blessing.

I’m off to see the oncologist later today 4pm as part of my assessments on the add aspirin trial. It was after my last appointment 3 months ago that I was sent for the bone scan on my back. I’ve not had any results as such but a phone call saying it wasn’t mets so that’s good I’ll ask for any update on why my back is so painful.

I’m getting cold feet about my overies and hysterectomy in two weeks time. I know I have to do it I’m scared not 2 but I’m so worried about the consequences of doing this before 40. Apparently your bones, heart and memory can really suffer especially because no hrt allowed. Also I’m worried I’ll become even more short tempered and moody and end up with no friends (or job) I think also being single I’m wondering with all that lot gone and both breasts will I ever have the confidence 2 meet anyone or do I even want 2?? Oh and it being so final noW that I won’t ever have children. Not that I probably would have because again I’d have been to worried to come off the tamoxifen for a pregnancy anyway and in 10 years I’ll be 48 to old for children anyway. That’s all assuming that the chemo hasn’t ruined that anyway.
Gosh that all sounds doom and gloom but in actual fact I’ve been feeling quite well recently it’s just all of a sudden I’m not sure if I’m doing the right thing with these overies or not?????
Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Mishy πŸ‘πŸ‘πŸ‘πŸ˜˜πŸ˜˜πŸ˜˜fantastic news it’s not mets really 😁😁😁for you darling, I know it’s not all brilliant news but at least it’s not mets which is a massive relief β€οΈβ€οΈβ€οΈπŸ˜˜πŸ˜˜πŸ’•πŸ’•βœ¨βœ¨shi xx
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Re: May 2017 chemo starters

Hi ladies got my results in not spine mets thank Goodness but back to being a patient have got two mild spinal cord compressions and significant scarring of the sheath surrounding it not what i wanted to hear now a neuro patient looking like spinal fusion surgery is on the cards as doc say i have myelopathy symptoms which will progressively get worse it can worse case scenario cause permanent paralysis if left but is also dibiltating not what i want at 47 hence why I was red flag.. the symptoms are the same as mets in c spine 😨 i thanked the gp for his swift action on this i have been told i can't work whilst this is going on and if and when i have surgery i will be unable for at least 6 months afterwards i know this from my previous surgery in 2005 so maybe my redundancy happened for a reason to keep me safe so to speak im fed up i have made such a great mental recovery as well as physical from bc not relishing becoming a patient again 😨 sorry for offloading ladies πŸ’–
Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Jay πŸ‘πŸ‘πŸ‘πŸŽ‰πŸŽ‰πŸŽ‰wonderful news thanks for sharing 😘😘😘really happy for you πŸ’ͺπŸ’ͺπŸ’ͺπŸ’ͺmay warrior. Mishy πŸ€žπŸ€žπŸ€žπŸ€žπŸ‘­πŸ‘­πŸ‘­for your results ❀️❀️❀️ And sorry to hear you are now redundant, you could have a go at something you’ve always fancied trying now and what about takes bag up on any of those free training courses to help you get back into work the government are always banging on about, make good use of all the free stuff you can get your hands on and are entitled to darling πŸ’•πŸ’•πŸ’•βœ¨βœ¨βœ¨shi xx
Member

Re: May 2017 chemo starters

Well done Jay how great to hesr no more onclogy for you!! I have to see mine once a year now as surveillance so to speak but not in a meds capacity
Im currently now officially jobless made redundant on the 1st August had to go and empty my cupboard hand my badge fob passwords etc in got some redundancy which was ok not great but not bad either will tide me over till i can figure iut what the hell im doing next!!! Physically things are good apart from chronic pain i seem to have in spine had mri results back tomorrow not cancer related fingers crossed it can be managed with painkillers!!
Hope everyone is well and enjoying life as we should any suggestions for a new direction on the job front?!!! πŸ‘
Community Champion

Re: May 2017 chemo starters

Hey ladies,

 

Just returned from my "FIANL" oncology appointment!  She's happy with everything, I'm happy with everything so that's it no more oncology....  

 

The final echo heart scan I had done a week ago has shown my heart to be functioning well and the percentage has gone back up to 60% - so I can now stop taking the Ramipril with immediate effect!  

 

Hooray - no more meds!

 

I've been recommended to have blood tests for thyroid and diabetes - just precautionary as all the meds I've been on can cause these problems - so to nip any problems in the bud it's best to get them checked.

 

It sure feels good to know - no more oncology - hopefully forever....! xx

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Re: May 2017 chemo starters

Thanks, ladies. I will go to the BRA group in early September to see how other ladies are coping and then chat to the surgeon again. As I have that scar tissue that needs removing, the plan was for it to be done at reconstruction. I may also wait until about March as I have to go to Leicester Hospital for the DIEP reconstruction and then have to have recovery time so more time off work and dealing with post surgery issues. 

Jay, maybe we can do this bit together too before our May get together! 

Hope everyone else is enjoying the holidays.

Community Champion

Re: May 2017 chemo starters

Hi Daffodil - I'm in the same position too - and I really can't decide what to do!  One day I think without question I'll go for reconstruction - next day or even that same day - I'll think no way do I want any op's etc and quite possibly the thought of it going wrong!  

 

When my time comes to discuss with the surgeon which is ages away - next March(!) - I'll listen to all he has to say but won't make any rash decisions - it's something that can happen anytime - maybe I'll wait until my 5 year anniversary is up and celebrate with a new boob!!  

 

I'm interested to hear what you decide to do.  I know Heather is happy with her decision of staying mono and yet others are happy with the recon they've had - no decision is easy!

 

Hope all is well and you're enjoying the summer weather! x

Member

Re: May 2017 chemo starters

Thanks Mai and good luck Jay and all you wonderfully brave ladies xx
Community Champion

Re: May 2017 chemo starters

Daffodil, im going to be facing the same soon also. I'll be guided by the surgeon, I think! At the moment I'm thinking of having a reduction on my good side to make it easier so the skin doesn't have to stretch so much on the other side of which I shall not speak! Xx
Community Champion

Re: May 2017 chemo starters

Trisha, I too get aches and pains in knees, thighs, lower back and hips. If I keep moving regular it helps but sitting for prolonged periods makes it worse. Hope you enjoy Amsterdam. I love it, such a pretty place. Xxx
Community Champion

Re: May 2017 chemo starters

Jay, hope all goes well for you and your heart holds out ok. It's all very worrisome. Look after yourself and don't push too hard on exercise. Sending hugs. Xxxx
Member

Re: May 2017 chemo starters

Good luck, Jay. Trisha, hope your pains disappear soon.

I am still trying to make a sensible decision about reconstruction before my next appointment with reconstruction surgeon at the end of September.

Any advice from those who have either had, or thinking of, having.

Enjoy the rest of summer. x

Member

Re: May 2017 chemo starters

Hi ladies. Sorry just been getting too much to be reading posts on here and Facebook. Please.dont anyone take offence. Am ok. Look really well apparently.
Don't always feel that I do but my pains although still they are better than a few months back. Stopping Anastrazole made no difference but I think since Herceptin am in less pain in the legs. It's my hips and back now but MRI scan for my back and CT habe shown Arthitis in my spine. Physio die to start and am hoping to swim soon. In the meantime August will be a busy month with friends and family visits. Hope the weather holds ;-) and off to The Netherlands end of the month see my brother whom havent seem for 3 1/2 years. Had lovely time visiting my Step Dad in South of France too 3 weeks ago. Just need more of my family to live in warmer climates! Do have a cousin in Aussie land but that's a dream. Love to all. Trisha xx
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Re: May 2017 chemo starters

So wish me luck as I'm off this afternoon for what could be my final echo scan - finished herceptin on 14th June - been on rampiril since February as the heart was starting to show signs of failure.  Won't know until August 14th when I see the oncologist, which again may well be my final meeting with her...  Fingers crossed x

Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Wolfe not heard of that, have you tried it yet? ❀️❀️❀️To everyone πŸ’•πŸ’•βœ¨βœ¨shi xx
Community Champion

Re: May 2017 chemo starters

Hey ladies, a little BCC reunion! Mishy, hope you are doing well. Our Facebook group is a closed group so only us on there if you want to join us. Xx
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Re: May 2017 chemo starters

Hi ya, just wondering have any of you ever heard of it tried mountain blood it’s some kind of suplimemt also called Shilajit ??? Xx
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Re: May 2017 chemo starters

Well done Jay lovely to hear from you and Trisha Daffodil how you getting on???
Treehouse mai Andi Heather hope you are all enjoying life xx
Im going to be joining whats app soon is there a page on there where everyone is?!
Don't do Facebook or anything like that im like Shi but the girls from ny where now maggies group have a closed group and im the annoying one that doesn't have it so probably going to join them soon
πŸ’– to you all its a year today had my 1st chemo how surreal!!!
Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Jay 😘😘😘great news you’ve finished treatments and fabulous news on raising all that money, you are amazing and thank you for everything on the his journey πŸ’•πŸ’•βœ¨βœ¨βœ¨shi xx
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Re: May 2017 chemo starters

Well done Jay xx
ktk
Member

Re: May 2017 chemo starters

Fab Jay! Well done to you and congratulations on getting through all the treatment. Xx
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Re: May 2017 chemo starters

Jay, what a wonderful idea, and what a great result! Well done!
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Re: May 2017 chemo starters

Well done, amazing lady. 

Community Champion

Re: May 2017 chemo starters

Hello ladies - long time no post - but I feel I simply must put on here the news that last night I held my celebration party - to celebrate end of treatment - after chemo, surgery, radiotherapy and 18 herceptin treatments - I'm the other side.  In order to pay something back to this amazing charity Breat Cancer Care - I had donation pots strategically placed around the room.  I did a speech in which I praised this charity - saying without it, my "journey" would have been significantly more difficult - I met a wonderful group of ladies - we shared some amazing experiences together and we found support, hope and love from one another - accordingly, I wanted to pay something back - I'm proud to say at the end of the evening we emptied the pots - a total of Β£269 was raised - I am totally amazed! x

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Re: May 2017 chemo starters

All good here. Busy too with visitors and part time work. Trying to get back to normality and enjoying the good weather.

Enjoy hearing how the rest of you are getting on. Proud of the walkers and runners doing it for charity. Well done. 

Take care and keep strong!

Daffodil x

Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Treehouse ❀️❀️❀️Well done amazing πŸ’ͺπŸ’ͺπŸ’ͺlady for being back at work and doing well, you are our treehouse storm trooper 😁😁hope cardiologist and rehab apps and next weeks apps go well πŸ‘jay great news you’ll be finishing active treatment and have family get together to look forward to πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ•ΊπŸ•ΊπŸ’ƒπŸ»πŸ’ƒπŸ»πŸ’ƒπŸ»And very well done raising all that money too πŸ‘πŸ‘πŸ‘mishy, hope mamma went well today darling, please let me know all ok 😘😘I’ve been back at work too πŸ€ͺπŸ€ͺπŸ€ͺ, not a fb or anything like that type of gal as mai7 knows, so sorry always sending my ❀️❀️❀️And thanks to you all and if you get time just to drop a quick update you are ok on here that’d be lovely πŸ’•πŸ’•πŸ’•βœ¨βœ¨βœ¨Shi xx
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Re: May 2017 chemo starters

Well done Jay so happy for you no more treatment πŸ’– enjoy the family celebrations you deserve it yeah "normal life' is pretty tiring aftrr everything isnt it, but also a good feeling too, so don't work too hard everyone but enjoy not being a patient too after all this stuff im finding i want to do mire things that make me happy and enjoying the new work/life balance fitting in good times and just enjoying the little things instead of always stressing about everything xxx
Treehouse i think you too have came so far in terms of getting back to 'normal' your a proper trouper !!! In fact a big pat on the back for everyone getting through it all and getting back πŸ’ͺ strong πŸ’–May ladies xx
Community Champion

Re: May 2017 chemo starters

Hi Shi and Mishy - yes all doing OK - I guess as most of us have returned to work and our "normal" lives, we're too tired to report on here!  We are in touch on facebook more regularly - why not join us over there?  I do try and come on here at least once a week!  I'm sorry to hear your boob is still playing you up Mishy - and good luck with your 1st mammo today - eeks - I had mine just before Easter - it was strangely nerve-racking - even more so waiting for the results.....  well done on having the genetics test (fingers crossed for you).  

 

I've got my final Herceptin injection a week today....!  Yippeee - end of active treatment for me!  (Just got to get my heart back on track and off the Ramipril!)   I'm really busy and absorbed in organising a huge family/friend celebration party for 14 July - I'm so excited and so is everyone around me!  I can't believe I've made it to the end of active treatment! 

 

I also did a 5K Race for Life "walk" last Sunday - raised an amazing Β£770 (plus Β£90 gift aid) for Cancer Research UK - it all felt so surreal whilst I was taking part - truly fantastic!

 

Love to all x

Member

Re: May 2017 chemo starters

Hi Mishy we have all been a bit busy by the looks of things. Glad you are doing well. So you decided to have the test, how did your son react? It’s a long wait for this one. I still hadn’t heard after 7 weeks so I phoned them. They called me back with my result a few hours later. I wasn’t surprised with my Mum’s history.
This is my second week back at work. I spent the whole day in yesterday. It’s going ok. Cardiologist and rehab this week. Herceptin and blood test next week. I still feel like I’m in the system.
Take care x x x
Member

Re: May 2017 chemo starters

Hey ladies hope you are doing well and enjoying life, things are going well with me my boob is still playing up a bit but not letting it get me down its my 1st mammo tomorrow 😨 had the genetics test ladies just waiting on results will keep you posted
πŸ’–πŸ’–πŸ’– to you all x
Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Just posting ❀️❀️❀️❀️To May ladies, hope you are all ok πŸ˜˜πŸ˜˜πŸ˜˜πŸ’•πŸ’•βœ¨βœ¨βœ¨Shi xx
Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Mai, great attachment thank you 😘😘😘love you and hope everyone has a lovely bank holiday/half term week β€οΈβ€οΈβ€οΈπŸ’•πŸ’•βœ¨βœ¨Shi xx
Community Champion

Re: May 2017 chemo starters

Here's an interesting article about BRACA mutations. WolfEE, this shows there are other known mutations which are not tested for and you must be in one of those categories: https://glennsabin.com/consumer-direct-genetic-testing-consumer-power-or-grief-ahead/
Community Champion

Re: May 2017 chemo starters

Yes Treehouse - two more days and then YIPPEE it's half term - I can't wait. I'm sure he will take you - Ha Ha! That sounds a perfect present - might have to get my hubby one of those! Enjoy!
xx
Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Treehouse, I love your humour beautiful 😁😁😁That break you’ve got your husband sounds lovely, hope you have amazing time. Mai thanks for article, I know some of the tns are already getting this but our once not mentioned it to me, so i’ll Be getting my little note book out when I have my app. And asking about it too. Hope everyone has been enjoying the 🌞🌞🌞🌞 mishy, I’ve answered you on Oct thread my blue titty friend, I still πŸ€£πŸ˜‚πŸ€£πŸ˜‚about that, love you πŸ˜˜πŸ˜˜πŸ˜˜πŸ’•πŸ’•πŸ’•βœ¨βœ¨βœ¨Shi xx
Member

Re: May 2017 chemo starters

Thanks Jay I’m fine I promise. I’m looking forward to half term. I got hubby a night away ( for 2) in a country house for his birthday he deserves a bit of spoiling 😁 - just hope he takes me πŸ˜‚
Community Champion

Re: May 2017 chemo starters

Treehouse - oh I  feel for you I really do, it's so horrid having to wait but personally, I take it as it can't be anything too bad or else you'd be seen urgently.  Not great and I know it's difficult but try and put it to the back of your mind - easily said, I know how I felt very recently but really try not to worry my lovely xx

 

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Re: May 2017 chemo starters

Hmmm just phoned surgeon’s secretary and she said clinic is busy and surgeon will be away for next 2 weeks so will have to wait for an appointment πŸ™
Not sure how I feel about this. Back to waiting again ☹️
Member

Re: May 2017 chemo starters

Thanks Mai i appreciate your opinion x hope today Is good for everyone don't work to hard and look forward to the heatwave coming!!
Community Champion

Re: May 2017 chemo starters

Mishy, I agree with everything Treehouse said. You're in a difficult divided position but your daughter needs to know for her own peace of mind. X

Tree house, hope the outcome of your scans is good. It's hard to not worry about everything now, living in a body you can't trust any more! Try and keep your mind busy and focussed on good things. X
Member

Re: May 2017 chemo starters

Work is going well only doing an hour a day this week and I am loving the part time thing.
I had an MRI last Tuesday ( it was to check right implant as it feels a bit squishy) and am still waiting for results. I did notice another lump ( about an inch away from original tumour about the size of a pea) while having a feel the night before scan. I phoned my surgeon secretary on Wednesday but have not heard anything back so will chase up tomorrow. Trying not to worry. If it is our old enemy back for a second try it is tiny and I will kick it’s arse again.
I still get shoulder pain in right arm and when I lie on my back I can’t put my hand on the floor but I’m not sure who to tell?!?!