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May 2017 chemo starters

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Re: May 2017 chemo starters

Oh Treehouse how have you got in with your tests and the work stuff my work stuff is happening now feeing really strange like the new kid on the block!!!!
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Re: May 2017 chemo starters

Treehouse πŸ’– thank you for your honesty i really appreciate it, i know i will have to have the test i owe it to myself as well as my daughter and him hopefully he will understand and respect this in time i really need to hear other peoples take on this as i felt like i was going mad all this conflict stuff going round in my head and yeah you can now have ovaries out as a prevention, they served you well when you needed them and gave you beautiful children but now because of the knowledge of the gene you can now keep yourself safe πŸ’–
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Re: May 2017 chemo starters

Also knowing I am brca 1 means I am having my ovaries removed so has directed my treatment and enabling me to take preventive measures. You may need to know just for you!!!

Sorry I will shut up now x
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Re: May 2017 chemo starters

Hi Mishy oh what a difficult situation. I understand your son is having a strong emotional reaction to this and how it may affect him in the future but I personally would get tested. That will enable you to make choices about your treatment and then give your daughter the chance to get tested if she chooses. Your son doesn’t have to get the test if he doesn’t want to . But if it saves your daughter from this horrible treatment I think it is fair for her to know if she is at increased risk. ( you can give her that choice before )
I am brca 1 and this meant my sister got tested and she is clear but at least had the chance to consider if she wanted preventative surgery.
Your son does not have the right to prevent your daughter from knowing her risk if you are willing to go ahead.
The risk to men although increased is still lower than for women.

Sorry but that would be my two pence worth. Good luck with whatever you decide.
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Re: May 2017 chemo starters

Yeah Mai thanks i think i will ask too as its quite important if we could benefit from this stuff maybe thats why you are having it Jencat?? All i really know about TN and ny own particular cancer is what i mentioned in my earlier post and it was an IDC which i think is quite common site for a tumor anyhow but the word basal like is kind of ringing a bell like i have heard it before!!!!
I have a family quandary ladies had genetic counselling meeting 2 weeks ago my app for testing should i wish to go ahead is 29th the quandary is my son doesn't want me to have it hes a doesn't want to spend his time worrying he could get cancer but my daughter does want to know as a woman and mother herself basically they both know that i may not have it anyway and there is no guarantee if i had either of them would have it anyway but he has point blank said no!!??? Advice on this one from you all would be really helpful or just an opinion πŸ€”πŸ€”πŸ€”πŸ˜¨πŸ˜¨πŸ˜¨
Community Champion

Re: May 2017 chemo starters

Mai - thank you for flagging it up - I'll be checking with my onc when I next see her in August (which should be my final one....!).  x

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Re: May 2017 chemo starters

Morning ladies just had a look at the article Mai The only thing i remember about my TN diagnosis tumor was described aa an ill defined mass grade 3 with high grade surrounding DCIS never offered the zolendric acid infusions didn't get my pathology report!!!
Community Champion

Re: May 2017 chemo starters

Jay and Jencat, I just read this article and I'm non the wiser about basal! πŸ˜‚ do we get to know if we are basal or is that a research only marker at present. May have to request histology report? https://bmcmedgenomics.biomedcentral.com/articles/10.1186/s12920-017-0250-9
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Re: May 2017 chemo starters

Hi Mai and Jay, I'm from the Oct thread and TN. I was given Zoldronic Acid every other chemo and then as a stand alone infusion in April and will do again in Oct and then six monthly for another couple of years. My oncologist told me that it was orginally given to protect the bones, but in fairly recent studies in the US it was shown to help prevent recurrances of bc. I've been told to make sure that I have regular dental check ups as it can affect the jaw x

Community Champion

Re: May 2017 chemo starters

Hi Mai - thank you sharing that interesting article.  Forgive me but is basel-like breast cancer the same as triple negative?  The lady I met during chemo - she's HER2+, but she's on this acid infusion twice a year - it's for bones - ie if you have arthitis in your family or your bone scans have shown a sign of it.  I didn't know they were using it like a targetted therapy - very interesting.  It does have side effects associated with it though - ie gum problems - making some dentistry a little complicated. 

 

The beautiful weather is slightly breaking down here with the odd rumble of thunder, ergh!  However, the birds are still chirping!

 

Community Champion

Re: May 2017 chemo starters

Hope everyone enjoyed the beautiful weather over the weekend. Life feels great when the sun is shining and the birds are chirping.

Heres an interesting article to read: http://www.canceractive.com/cancer-active-page-link.aspx?n=4081&Title=Basel-like%20breast%20cancer%2...
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Re: May 2017 chemo starters

I did Shi thanks πŸ’–looking like another lovely weekend we have coming up taking Ella to seaside so watching Royal Wedding on catch up 😊
Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Hi mishy I pmd you last night, did you get it? πŸ’•πŸ’•βœ¨βœ¨Shi xx
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Re: May 2017 chemo starters

Hi Jay i was advised if doing anything strenuous a full hoover through or gardening type strenuous to take an ibuprofen before hand!! also to not carry anything heavy on that side apparently a bad cold can worsen it oh and try to sleep on opposite side he explained that it can improve and all of a sudden come back some can have it indefinitely, tbh Jay in used to the aches and pains so im not bothered as you say i wake up every morning and thats good enough for me!!! Im just relieved it was nothing else and happy that the anxiety monster moved on and giving me a break hes been in my ear fkr a couple of weeks and was starting to do my head in😨😨😨😨 πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚ take care
Community Champion

Re: May 2017 chemo starters

Mai - I agree our May meet up was a truly amazing experience.

As you say, we came from a group of ladies who have been dealt one of life's terrible traumas. In those difficult, dire days we built a fantastic relationship on this forum - not really knowing who we were talking to - a bit like an imaginary friend that young children have - and not dissimilar to a guardian angel - always someone there to listen, offer advice and give support.

We then proceeded to our secret facebook page - where we all suddenly became real humans(!) - we got to know a little more about each other - sharing photos, etc.

Finally meeting each other in person was truly surreal - to hug each other - when I've already given and received so many virtual hugs from each of you ladies was truly amazing!

As you say, "we already had that special bond and then we met" - we could make a movie!!

That day in London will live with me forever - to 8 of my best friends, thank you xxxxxxxx
Community Champion

Re: May 2017 chemo starters

Oh Mishy - I'm delighted that you too have been reassured - it was the same for me, and it's really weird how the feeling of lead immediately comes off your shoulders isn't it?   

 

As Mai has said - isn't it strange that we can cope nowadays with any other diagnosis thrown at us - I think that's because we've all experienced the day the Breast Consultant using the word "cancer" in our diagnosis, we know almost nothing can ever be as soul destroying as that moment.  However, we've battled and we're still here to enjoy today.  At the end of the day, there's no denying, cancer really is a truly horrible disease and it affects not only those who have been diagnosed with it but all the people close to them.

 

I've read about chostondrities, following which, I'm sure a lot of us ladies who have had chemo and rads experience from, however, we all put it down to internal scarring and just carry on.  Was you given any medication or advice for dealing with this discomfort at all.

 

As you rightly say - all of these new diagnosis are a pain but a small price to pay for being able to wake up this morning - smile and be alive xxx

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Re: May 2017 chemo starters

Great to read about your good news Mishy, Jay and Daffodil x

Community Champion

Re: May 2017 chemo starters

Sorry I've been a bit quiet but just been really busy.  Our May meet up was fantastic and it was so lovely to meet everyone in person.  Kinda strange that we already have a special bond and then meet afterwards.  πŸ’—

 

That's great news Mishy.  Can you believe that we are now grateful to have anything wrong with us as long as it isn't cancer.  What a twisted world we live in! Xx

 

Jay, that's fab news, you must be feeling very relieved and perhaps celebratory. Xx

 

Dafodil, great news for you too. Such a beautiful word "benign". I would just be saying it repeatedly now if I were you! X

 

Treehouse, don't feel that your are putting on any of us if you need a rant, that's why we all came here in the first place! Hope things get better soon with your work and checkups.  Just think how far you have come, so don't let a few rocks get in the way when you've already moved a mountain. Xxx

 

Shi, hope you are doing well lovey and still sparkling. βœ¨βœ¨βœ¨πŸ’—πŸ’—xxx

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Re: May 2017 chemo starters

Treehouse πŸ’– yes you are true my friend hope your work meeting went well x
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Re: May 2017 chemo starters

Love you Mishy I think we all know that feeling but keep pushing it down. . Please not again ☹️.
Glad it is nothing nasty . I know lymphodema isn’t nice but as you say could be worse x x. Hugs
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Re: May 2017 chemo starters

Oh Jay just read your post fantastic news isn't it awful when our minds take us to worry land this seems to be the new normal for us bc ladies my surgeon did say to me that he was more pleased i went rather than sit at home making myself I'll in worry land or with a real problem festering away i have had the worst meltdowns ever since original diagnosis bit ashamed to say i was thinking the worst and was dreading doing all of this again so today i thank God i have lymphodema😨 πŸ’–
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Re: May 2017 chemo starters

Hi ladies thank you for your best wishes update is i have lymphodema of breast the orange peel pitting is through fluid swelling under the skin surface ito say i was so relieved was an understatement i could have had an ultrasound to reassure me but was happy with surgeons examination he explained that orange peel texture is usually a sign of infection or inflammation especially after extensive treatment for breast cancer, he is referring my to the lymphodema clinic and is satisfied that my mammo which is nearly due will be a sufficient, he also check me for lymph node swelling and has discovered that the pain i am in is also due to Chostondritis which is inflammation of ribs and sternum cartilage another side effect from rads but a small price to pay!!!!

Daffodil glad to hear there also for you was nothing sinister as they say and it can be sorted i just wanted to update you all x
Treehouse im sorry you too are experiencing boob problems i hope the scans will resove everything and you too get positive news, who would have thought i woukd be happy to have some lymphodema I'll take anything over a recrrance and Treehouse i have been suffering a bit wuth anxiety which can cause a whole host of symptoms including palpitations which can be scary i hope this settles soon πŸ’– love to all of you ladies and thank you for your support always πŸ‘
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Re: May 2017 chemo starters

Good luck for today Mishy x
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Re: May 2017 chemo starters

Time to share some GOOD news ladies - I went for my routine appointment with oncologist yesterday morning, I was in a "mess" - I'd suffered terribly from a panic/anxiety attack in the night previous and my head was seriously not in a great place.  However, bad quickly turned to good  - my red blood count is back to pre-chemo days and all is looking well, the great news is my recent echo scan shows my heart is back to 65% which is fantastic as it means my final two herceptin injections can go ahead with no delays - my final one being 14 June. The even better news.... my mono-mammogram result is all clear... HOORAY!   I had a concern over a small lymph node in my neck and the oncologist reassured me all is ok, it's really not unusual for lymphs to enlarge for all kinds of different reasons - the very fact it goes down shows there's nothing to be worrying about - the fact too that it is an extremely long way from the breast is also a positive - but she was pleased I mentioned it and I was so glad I did as I left feeling totally reassured me. My next appointment with her is 3 months time, where she is planning to be in a position to sign me off from the oncology department and handing me back in the care of the breast consultant for yearly check-up and mammogram - again, HOORAY!

 

I'm now preoccupied organising a big family/friend party for July to celebrate!!! xxx

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Re: May 2017 chemo starters

Thinking of you Mishy.

I had my follow up appointment with the BS. He confirmed that my swelling was not sinister but should be removed. As not sinister, he can do it, or the reconstruction surgeon can do it when and if I have a reconstruction in 9 months or so.  So all good. Will just wait to hear what they decide.

We all worry about lumps and bumps now so it is a relief when we get reassurance.

Saturday was fabulous and it was wonderful to meet the May Starter Wonder Women.

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Re: May 2017 chemo starters

Hope everything goes well tomorrow Mishy x

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Re: May 2017 chemo starters

Hi Mishy and Shi sorry had a busy day with MRI in the morning and GP this afternoon. Back to waiting for results. The scan was originally booked to check my implant wasn’t leaking but then last night I found another lump ( near my scars) so hopefully that will show up as nothing nasty. I will phone bcn tomorrow to let them know.
Gp was to discuss returning to work and fit note. Also mentioned my palpitations which he says is due to anxiety which is very common for cancer survivors trying to get back to normal. All in all a very stressful day.

I am going into work tomorrow to discuss in detail ready for Monday.

The Saturday meet up was overwhelming and very lovely. Feeling very connected to you all. ( also now I have met them I don’t want to worry them with my problems. It was much easier when you were just virtual)

Hope tomorrow’s appointment goes ok Mishy sending hugs x x x x
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Re: May 2017 chemo starters

Its tomorrow Shi 😨 yes they must have had a good one haha!!! πŸ’ƒπŸ’ƒπŸ’ƒπŸ’ƒπŸ’ƒπŸ’ƒπŸ‘
Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Mishy ❀️❀️Think the May ladies are still recovering from their meet up πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ•ΊπŸ•ΊπŸ•ΊπŸ’ƒπŸ»πŸ’ƒπŸ»πŸ’ƒπŸ»Hope your appointments gone well πŸ˜˜πŸ˜˜πŸ˜˜πŸ’•πŸ’•βœ¨βœ¨βœ¨Shi xx
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Re: May 2017 chemo starters

Hope you ladies all had a lovely time at the meet up sorry I couldn't come and meet you all but too far away!! I bet you had so much fun how lovely 😊
Yes i echo Shi thank you all May ladies for helping us later chemo ladies along with yoyr reassuring words when needed practical tips and for being so πŸ’ͺ and of course introducing us all the the πŸ’ƒπŸ’ƒπŸ’ƒπŸ’ƒ for the bloods haha enjoy being post BC everyone πŸ’–
Wolffee im there this Wed putting it out of my mind till then xxx
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Re: May 2017 chemo starters

Looks like you all had a smashing day xoxo
Shi Community Champion
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Re: May 2017 chemo starters

Jay, I’m glad you all had a great meet up 😘😘😘thank you mai7 and all the May thread and tatyana and mishy18 once again for taking me and the beautiful Oct thread under you wings we ❀️❀️You all and words can never let each of you know how much it’s meant to us all having your kindness and guidance with everything, you are an amazing bunch of ladies πŸ’ͺπŸ’ͺπŸ’ͺπŸ’ͺπŸ’•πŸ’•βœ¨βœ¨βœ¨Shi xx
Community Champion

Re: May 2017 chemo starters

Ah Shi sorry you couldn't make this meet up - maybe next time - your name came up in conversation a few times today - hope your ears weren't burning...!  x

MJK
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Re: May 2017 chemo starters

Sorry I won't get to meet you Shi. X
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Re: May 2017 chemo starters

Will miss you Shi your sparkles ✨ have meant a lot to me this year 😘😘
β€οΈπŸ§‘πŸ’›πŸ’š
Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Have a brilliant time everyone, sorry I’ve not been able to get this time ❀️❀️❀️❀️You all πŸ’•πŸ’•βœ¨βœ¨βœ¨Shi xx
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Re: May 2017 chemo starters

Can’t wait 2 see you all later. Xx
Mishy18 sorry 2 hear your having panics. What day is your check up? I had some funny lumps and had to wait a while it turned out my implant had problems thank god but I had spent a week or more convinced it was something else. The surgeon will put you at ease so many things other than our worse fear that it can be. 🀞
MJK
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Re: May 2017 chemo starters

I'm really looking forward to seeing everyone. Sorry I haven't been on for a while. I'm back to a full workload and my hubby is commuting into London so life's a bit frantic. I think it's really important to get concerns checked out even if it isn't a problem. We all need peace of mind. X
Community Champion

Re: May 2017 chemo starters

Whoop Whoop ladies - our meet up date is almost upon us.....!  Excited....! x

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Re: May 2017 chemo starters

Thanks ladies for your kind messages, yeah the old anxiety monster came back to me a couple of times this week and took me into worry land tbh i know im there on Wed and will get a thorough examination so i will know whats what so to speak then, Trisha you sound like you are going through it atm it does also reassure me to know someone else has the orange peel type thing and its being associated with lymphodema or fluid build up but i do hope you get it resolved soon, sleep deprivation and early bird chorus seems to be the new normal too doesn't it i find when im struggling a few drops of lavender and chamomile essentials oils on pillow help and my hot milk with cinnamon and honey help me nod off started this during chemo days haha!
Treehouse good to hear from you hope you are well you sound like your recovery is going well you are definitely fit!!
Annie hi thanks for the nudge sometimes i need one ti bring be back down to earth
Meeting the ladies from Maggies group for a cuppa and catch up in morning a lovely bunch of ladies they are
Have a lovely weekend everyone xxx
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Re: May 2017 chemo starters

Hi ladies looks like lots of early birds today. I too am struggling with sleep. I really hope they check you out soon and can give you some reassurance. We must check everything. We are survivors.
Today is my final cardiac rehab level 3.
I can continue to level 4 but have to pay.
These sessions have given me so much strength and stamina after months of just battling to survive. I still creak and ache but I’m here and grateful. Moving seems to be the best thing for me.
Just wish I could sleep πŸ’€
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Re: May 2017 chemo starters

Hi Mushy. My orange peel skin on the opposite side of breast to where they did lumpectomy and quite swollen. BC nurse said trying rush me thru to an appt with lymphodema nurse. And a CT scan been down because of pain. Cant stand up for more than a few mins and walking have to stop every few yards and try stretch my back out x
Community Champion

Re: May 2017 chemo starters

Ok, Mishy, you're being ridiculous! Come on....life can't be that sh**€! But...you are quite right to have it checked. Fingers crossed, and toes, for you! X

Shi Community Champion
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Re: May 2017 chemo starters

😘😘😘I know, you get told it’ll make things feel different but how do we know what normal different is and different different 😳😳😳like before, we don’t so I know us Oct lot are straight on anything now and the units would rather us be vigilant and get checked out. ❀️❀️❀️now where’s that famous Geordie πŸ–•you get that out and me and mai7 will be up with some πŸ₯ŠπŸ₯ŠπŸ₯ŠπŸ€ΊπŸ€ΊπŸ€ΊπŸ€Έβ€β™€οΈπŸ€Έβ€β™€οΈπŸ€Έβ€β™€οΈπŸ₯ŠπŸ₯ŠπŸ₯Štoo πŸ˜πŸ˜πŸ˜πŸ’•πŸ’•βœ¨βœ¨βœ¨Shi xx
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Re: May 2017 chemo starters

Yeah Shi it does help thanks 😚😚 its like Jay says about the scar tissue after rads someone suggested breast lymphodema but i got a call today from bc clinic to say i will be seeing my bc surgeon next week to get it looked at and it made me panic!!! Im sure once im there i will be given a good old examination and hopefully it will be down to bloody rads!!! I just wish they would tell you in more detail about the different things that can happen so we wouldn't worry as much xx
Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Mishy πŸ˜˜πŸ˜˜πŸ‘­πŸ‘­πŸ‘­it’s natural darling to be 😳😳till you know for sure, but you’ve not done all that chemo and rads for the πŸ’©to be back my lovely. You are doing right thing getting checked out, have a look at our Oct thread, we’ve all had a 😳😳😳these last few weeks and all been back to get checked over and been told it’s the rads that’s made things different. I hope that helps you a bit my beautiful πŸ’ͺπŸ’ͺπŸ’ͺamazing mishy πŸ’•πŸ’•πŸ’•βœ¨βœ¨βœ¨Shi xx
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Re: May 2017 chemo starters

Lovely to hear hear that you're problem was caused by scar tissue Daffodil what a relief ti hear jay you are right about the anxiety it causes im panicing like mad about my boob now my app is a week today and wish it was here its the orange peel area im worried about its the other side of breast not where the original tumor was i know it can be a symptom of bc so im πŸ’© no matter how much i try to reassure myself that surely it couldn't be so soon after completing an arsenal of bloody treatment tell me im being rediculous ladies 😨
Community Champion

Re: May 2017 chemo starters

Such a relief Daffodil - I think the scar tissue (which no one really warns you about before having the treatment) causes us quite a lot of anxiety!  Great news on the clear mammogram too.  Onwards and upwards! xx

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Re: May 2017 chemo starters

That's great news Daffodil x
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Re: May 2017 chemo starters

Good news. Ultrasound done on swelling near mastectomy site. Apparently likely scar tissue so nothing to worry about. Also mammogram of remaining breast clear.