You’re definitely one step closer. I hope the side effects settle down for you. How long have you been on it for?
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Hi guys
Skin lesion on chest successfully removed and now I have a large white dressing poking out attractively from the top of my shirt. I was actually thinking, my poor bloody chest. It’s had that many operations that it probably wonders what it did wrong to take such a hammering! Off that goes to pathology now. Apparently it’s either an angioma, a basal cell carcinoma or it could be something that can suddenly pop up as a result of radiotherapy. If this is the case then I thought it definitely worth sharing on here. I’ll let you all know the results although I’m not worrying about it. Thanks for all your good wishes.
@cass2 Yes this is the patch that first appeared overnight about 2 months ago, I think. I went for a gong bath at a local yoga centre that a friend took me along to. It definitely was very relaxing and almost resets you. At least, that was my experience and I slept very soundly that night. It was a lovely experience actually. So they haven’t given you filgrastim injections then. This is disappointing to hear. It will ultimately cost more if you are hospitalised than it would to give you these. Can you ask outright again today? I thought everybody was given these. I’m so sorry to hear this, Cass.
Hi lovely @carrie5 - Knowing you, I somehow imagine you will be off for a sound bath very soon. 
I’m fine thanks. I have been told not to stretch my arms out for a few days. Luckily I’ve worked out this involves hanging out washing, hoovering (but not dog-walking, I’ve decided!). Sorry to hear you are battling the Letrozole SEs but you’re over halfway with the Herceptin. 
@bellbert - I do remember lying on the sofa after my first Filgrastim with pain in my lower back and pelvic area but fortunately that was just the first one. Sorry to hear yours has been so bad that you’ve suffered sleep deprivation. That’s torture in itself. The worst is almost behind you. Keep going.
I’ve decided to go and spend my birthday money after work tonight. No more Mrs Thrifty. Now I’m all about ‘spend it and enjoy it’. I’ll never be stupid with money but breast cancer has changed my attitude to enjoying it NOW rather than saving it all for the future.
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@salbert hi, wishing you well for your op recovery, and just to say, I had 3 basal cell carcinoma’s removed before I had breast cancer, all have healed well and apart from the little scars I have not been troubled by them post op (touch wood), as you say, just something else to deal with! Xx
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This is my state of mind right now
How much of this s__t I can take in.
am trying my best to have my life back
Awaiting for my radiotherapy appt, I finally had the strength to have a dentist appt , so after an xray, the dentist was concerned LL6 tooth was loose/moving she told me she will ask her consultant colleague to look at it. But she did not informed me she was gonna send a referral until a hospital head and neck dept called me to book an appt, so I’m shocked and it’s a 2WW referral.Then they sent my referral to a different hospital that is so far where I leave and of course I would want to be seen on the same hospital am
Having my cancer treatments so that every information they will be able to see.
So after repeating myself to the dental reception few times my referral was finally sent to my preferred hospital.
And today I went and see the same dentist that saw me and I’ve asked her why did you sent a 2WW referral and she said because I’m a cancer patient and she doesn’t know the reason why I have a loose tooth.
So I’m really annoyed and scared that my cancer has spread.
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Hi @sassy3 and thanks for sharing that you had 3 basal cell carcinomas removed. It really does pay to be hyper-vigilant and get everything checked. It’s really good to know that they are gone and trouble you no more. I feel I have done the right thing by heading straight to Marsden the instant this lesion appeared.
@jaa2019 this is a prime example of people not communicating properly. Because there is every likelihood that this will just be a loose tooth but due to you having had to find out in the way you have, it has made you feel frightened. The difference between the way my first consultant communicated with me (who used to strike the fear of God into me at every meeting) compared to the warm and reassuring way that the consultant I switched to communicates, were so different as to be polar opposites. My mental health was restored to me on the day that I met her and changed hospitals. It is way more likely that the treatment you are having may have caused your tooth to become wobbly but nobody has communicated this to you properly and left you fearing the worst. Push for answers and try to remember that you are probably just fine. Perhaps ring our BCN nurses to appraise them of the situation so they can put your mind at rest a little over the weekend. Here is the number - 0808 800 6000. I’m so sorry you are feeling this way.
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@jaa2019 good advice as always from @salbert, my sense of how other non cancer related health professionals deal with folk with a cancer diagnosis is to panic and be reluctant to get involved and pack you off elsewhere. Hopefully you’ll get a proper explanation soon if you’re on 2ww and the correct hospital and hopefully it will not be anything scary.
Totally other subject, I noted ‘wear it pink’ day for bcn (next Friday) with a few friends and family and said I’d do a bcn donation for any who gave me evidence of wearing pink. A number of them have said they’ve remembered so I’m slightly panicky about what it will cost me! But hey, a very good cause. Anyone else on the thread going pink next Friday?
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So pleased your show went well as did your hospital trip. It’s really important that you mention your experience as the leaflets I was given ( and probably everyone else) just say to look for skin changes. It would be nice if they were more specific or there was a website you could look up pictures.
@carrie5 great news about Herceptin no 10. I sympathise with Letrozole side effects nd eventually swapped to Exemestane some months after finishing Herceptin. My team said some of the side effects could be either drug so needed to finished Herceptin and give it a few months to see if they settle. Exemestane is less achy joints ( worse in the morning but does ease with movement) but the hot flushes/surges and night sweats are worse.
I’m going to a Sound Bath/Therapy on Friday 24 September and will be wearing pink. It’s at a cancer charity.
@jaa2019 sorry about how you have been treated at the dentist. I hope you find out more and your mind is put at rest. Remember to write down any questions you have.
Just popped on for the first time again in weeks! And i dont think i can catch up with how everyone is but this is the 1st thing i saw and im hoping its just a benign lesion for you but if it is something else just know its still very treatable and you have acted as soon as you have noticed it! I have quite a lot of moles so i am always aware and checking.
@jaa2019 Hello, i just wanted to put your mind at ease! I also had to have denstist checks and mine was also 2 week wait… its not because they think its cancer its because you are a cancer patient and chemo etc can effect our oral health so they make you priority. Also a friend of mine lost a tooth due to chemo and everything else… hers was the same with sounds. I hope you feel a little better, i know what its like though to spiral as i do it all the time now! Life is tough after cancer and any aches and pains i would not have batted an eye lid but now i always panic a little with things.
Hope everyone is hanging in there, like i said its been a while, for me mentally i am finding it better to only pop on now and again. I think i am trying to push cancer out of mind as soon as i can and for me cancer is not my whole person i am so much more so i been avoiding this app and other things lately. You are all brilliant though! Could not get where i am now without anyone at all so i dont mean to sound ungrateful… i guess everyone handles it differently and this is defo one of my safety nets to turn to… but i am finding it better for me just to check in now and again… it only takes one comment i think sometimes to send you wappy again… well me it does 
loads of positives and you read that one negative and it just sticks in your mind. I will always be a part of this amazing group 
i will just pop up now and again. A lot of life things have happened with my Lil one starting nursery to another holiday and just life its self running a house etc.
Ps just a bit of a laugh i had a dream other night my nipples grew back it was bloody scary 
don’t want them! Glad it was a dream hahs. Jemma i also have some impressive hair growth. Lots of massages and pure organic rosemary oil! X
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So lovely to hear from you @jeml don’t ever apologise for not being on the thread you have to do what is right for you.
Wow you little one starting nursery, that’s such a big thing but now you have all the time to do the housework😜. That’s all I ended up doing, when I had hoped to do things for myself. I also found myself clock watching to make sure I was on time to pick them up! Being a mum isn’t an easy job and adding cancer into the mix is even harder. You are amazing and so is your hair growth.
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Thank you so much for lovely words as always! @naughty_boob i hope you are well and enjoying your weekend.
She goes for 3 hours in the morning but it goes by so quickly haha i set an alarm when its time to go pick her up. She started in September and this is the third lerg already! Just glad i have finished treatment just in time. She is at my mums tonight so i am having a relaxing saturday x
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This is very random but do you know how long Phesgo stays in your system for? I meant to ask my Oncologist but i forgot last time i spoke to her. X
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Your hair looks fab! How long did it take to get to this length? Xx
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Thank you. I had my last chemo in November so its nearly been a year now x
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If I remember rightly I was told it took about 3/6 months for it to leaveyour system.
Found this on the NHS (Herceptin 6 months) probably the same for Phesgo. Couldn’t find Pertuzumab/Perjeta on the NHS, the other active ingredient in Phesgo.
Hope you have a lovely evening.
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@naughty_boob that’s useful information about Letrozole/ exemestane etc and also the reminder of combined effects of herceptin. My joint pain has improved a bit, stiffness hasn’t but I just keep moving. Worst is horrible bitter taste, a constant feeling as if I’ve drunk a load of liquid too fast and need to burp, and latest a persistent cough. Since chemo killed most of my taste buds eating isn’t much fun. I’m maybe far enough post menopausal that hot flushes aren’t bad. Last discussion with consultant was maybe swap to temoxofen which I was surprised at as I didn’t think it was as effective for oestrogen + cancer. I am wondering if between chemo and AI 's some of the taste stuff is acid reflux. I will ask next time as that might be possible to manage better if I know what it is and then stick with the AI’s for a bit longer. Other consideration is my dexa scan came back in ‘osteopenic’ category and AIs can worsen that. Think I will try to gather info for now. I assume I get discharged after last herceptin I don’t know then how you get advice/ changes in medication after that and how much gp’s know.
Enough of that, @jeml I love the hair and quite understand you managing your fears by being careful and not checking the thread so regularly. I think its here for however we need to use it and great if you feel like it, to know how you are. Love to all.
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…and a ps to clarify: AI’s vs temoxofen- I thought choice of what’s best was age/ menopause related
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When I swapped from Letrozole, I was offered Anastrazole, Exemestane or Tamoxifen. Tamoxifen was a no if I had a history of blood clots and is predominantly offered to perimenopausal and AIS for menopausal it from my discussion it’s what works better for you. I was always told Letrozole was the ‘gold standard’ but also heard from Dr Liz O’Riordan that hospitals have their preferred drug. I even had an oncologist tell me Exemestane didn’t cause high cholesterol but it’s on BCN and Cancer Research website that it does. I’ve also read of others saying it had affected their levels.
As far as AIs affecting bone density, I believe it does, so I was automatically offered Zoledronic acid/Zometa infusions 6 monthly for 3 years to help prevent oestoporosis. I was refused a dexa scan, even for baseline, as I was being given the treatment for it. Think it was more on costs than anything else. Do you have any medications such as alendronic acid for your bones in tablet form?
My oncology team haven’t signed me off yet and I finished Herceptin September 2024 as I was still having issues with AIs. They keep pushing to sign me off and I refuse as GP is useless.
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@jeml you look fabulous, hair growing great x
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Many thanks @naughty_boob . I was told I don’t meet the criteria for needing zolendronic acid although it was on my original plan.
Just got calcium/ vit D supplement now and a follow up dexa scan 2 years on. I think you’re right that they’re after cutting costs wherever possible. This post chemo/ post radiotherapy time is a weird phase somehow!
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I also have vitamin d and calcium supplements, always forget about them.
It’s hard to understand the criteria sometimes and when your team put it in your original plan then changed it. Did they explain why?
I have to say you’re not the only one to feel ‘left in the dark’ or ‘feel sidelined’ ‘fell abandoned’ ‘ stepped off ferris wheel of treatment, now what?’ post chemo/radiotherapy. I’ve heard so many say the same, not being in ‘active’ hospital treatment, although for yourself still being on Herceptin, I would say you still are and should still be monitored. I continued to have bloods before every Herceptin, they would only call if there was a problem and my injections were outsourced to a private provider who also monitored everything.
Personally, I think as long as you are taking any medication to prevent breast cancer you should be monitored and have access to oncology/ clinical nurse specialist (CNS), breast nurse and breast surgeon for support. My GP always refers me back to them as they don’t like making a decision without their say so.
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