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Butterflyflyfre
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since
31-07-2017
284
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Tuesday
1 Hug
Can I firstly thank you Caz for starting this thread. Your timing was so right for me. I’ve had a very difficult 2 years since initial de novo diagnosis. I’m currently stable, with no active cells and on Denusomab and Letrozole. I thought mentally that I’d dealt with everything that I had gone through and had thrown at me, but I realise these past few days that I haven’t even started 🙄 I was already on anti-depressants for PTSD and to be fair they have got me this far, but having read this thread, plus others on similar topics, I have decided that they are not enough and I need more help. I went to the GP yesterday and asked for a change in medication. So today I start to taper off my existing one, and start the new one. Scary but it seems very controlled and I’ll have a review in 3 weeks to see how I’m doing. I had 9 months of counselling, finishing earlier this year but I’m not sure I want to revisit it again at the moment. However this remains an option as I can self refer. Not sure why I’m posting! But guess what I’m saying is how amazing this forum is, how relevant, how magical that sometimes posts just appear at the right time, and make us realise we are not alone. So thank you to everyone who has contributed because you have helped me. Xx
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07-09-2019
10:45
The 2 companies I have had success with recently, as in provided a sensible quote, are Boots, and Insurance With. InsurePink were in the game, but seem to have dropped travel insurance from their list. Hope you get a quote you are happy with and have a great time away. Xx
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18-03-2019
10:16
Hi Chee Sorry to hear you are having problems with the dressings used for your PiCc line. I too had the same problem, and tried every kind of dressing they had. Surely they need to allow your skin to heal before applying another sticky dressing, it must be so uncomfortable. I had got to the point where the nurses were considering daily flushes and just using gauze and tape each day. So that might be worth a try if not too much hassle. Otherwise have they mentioned a Port? I had to have my PICC line removed urgently as I had a blood clot, and then went on to have a Port inserted. No weekly flushing and no dressing changes. Under the skin so no hassle with showering. The best thing for my skin certainly. I still have to be careful with dressings when they access my Port, but as long as they don’t stay on too long I’m fine. Hope that might give you something to work with. Good luck. Xx
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12-01-2019
10:53
Hi PinziA Your honesty and realism has really struck a chord with me, and highlights many of the fears I have when considering treatment after 1st and 2nd line treatment has failed. Thank you for putting it into words. The thing that really resonates with me is your comment about finding the balance between prolonging life, and the quality of life that is being lived. The doctors are there to keep us living, but they are not living with the effects of the treatments that they offer. I too have been referred to my hospice, and have met my palliative care nurse. Their focus is very much on helping us live the best life we can, and are completely supportive of any decisions that we make, which is so reassuring. I hope you continue to find peace and comfort. Xx
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06-01-2019
11:23
Has anyone had their secondary BC re-biopsied after treatment failure? I was originally triple positive (July 17) and now after Herceptin & Pertuzamab (after 11 months) and Kadcyla (after 2 cycles) have stopped working, with progression in lymph nodes and bones, I am waiting for an appointment for a biopsy to re-evaluate my status. The question is; am I still positive and have become resistant to the HER2+ treatments, or have I gone negative? Was told this on 11 December, and after 2 unsuccessful biopsy attempts, I’m waiting for a 3rd appointment. All the while I have a party going on inside me, which scares me. Keep trying to remind myself that progression was spotted early, and as I’m not in any real discomfort, I should be enjoying not having any treatment (only Zometa) but it’s not that easy. Would be be interested to know whether anyone has changed from positive - negative, or vice versa? Xx
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14-12-2018
06:14
Hi Nicky, thanks - although they couldn’t easily access the lymph nodes today so no biopsy was taken 🙄 doctor has referred back to the team and I wait to find out what they propose next. This cancer doesn’t give the doctors a chance when it changes its spots along the way. I too was triple positive, so on hormone tablets until the Kadcyla started, but as I had progression before they stopped, and then the Kadcyla didn’t work, I’m guessing, that like you, everything has gone negative. I’m glad you’ve had a stable year, and hope the scan continues to show good results in the new year. Xx
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13-12-2018
06:08
Hi Nicky, I have ended up only having 2 cycles of Kadcyla and in a repeat scan found it’s made no difference at all, and in fact have new sites of progression. So, similarly, I am having a biopsy to check receptors as the doctors are wondering if mets are now HER2- rather than + as my primary was. Everything back up in the air again, and a new plan needed. Trying to take one day at a time to stop me overthinking. Xx
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25-10-2018
05:22
1 Hug
Thank you Helena, you’re so kind. Xx
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25-10-2018
09:21
Hi Leigh, have seen your story and wish you all the best in continuing the treatment that’s working. It’s a interesting one re surgery. I chose to have a mx, as against lx, for my peace of mind and my pathological report showed no cancer cells at all in removed tissue. But with lymph node involvement at the outset, and a lesion on the sternum the chance of recurrence was always going to be high 🙈 a shock that it has happened so quickly for me though. Take care xx
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24-10-2018
10:52
3 Hugs
Had felt a bit of a fraud earlier in the year posting on the SBC threads having a solitary sternal lesion (diagnosed simultaneously to primary IDC and lymph node involvement Oct 2017) that reacted well to chemo. But sadly I now have properly joined the club. Follow up PET/CT scan October 2018 has shown multiple bony lesions in pelvis and collarbone, and widespread lymph nodal lesions. I hadn’t even completed 12m of Herceptin and Pertuzamab. 4x EC, 4x Docetaxol, Mx, SNB, 15x radiotherapy, Letrozole and 16 H&P. I am gutted, and having spent the past 2 weeks telling all who needed to know, am now feeling completely overwhelmed. I start TDM1 (Kadcyla) tomorrow, 3 weekly with Zometa. This forum was a lifeline to me last time going through treatment, but I am wary of posting on the chemo thread this time for fear of upsetting any of the new primary ladies, so thought this was a better place to start. Thank you for listening.
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23-10-2018
10:45
Hi, unfortunately I’ve been told I’ve got progression even before I’d finished treatment for my primary. I start chemotherapy again this week and am gutted. Last time I found it really helpful being in touch with ladies on the forum having treatment at the same time as me, and would like to find that same support again. But I’m not sure where the best place is, for fear of upsetting newly diagnosed ladies. Would you be able to point me in the right direction please? I’m having Kadcyla (TDM1) and will be rescanned after 2 cycles to check what affect it has had. Thank you.
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27-06-2018
09:26
Thanks Jay, congrats on finishing herceptin. Hope the echo gives you good news and you can reduce your meds soon. Xx
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13-06-2018
09:20
Hi can I ask has anyone experienced a reduced LVEF? I’ve been on Herceptin and Pertuzumab since October and so far had 11 cycles. Had my 3rd echo today - first and second one 60%, today 50% Doctor has said I can have the next 3 cycles, but will then have a repeat echo and be seen in clinic. Xx
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20-05-2018
09:39
Hi Anne, glad you have good support. Funny you should say about not thinking about cancer every minute, as I’ve thought that the last couple of days. Nice feeling isn’t it? Hope your blood count is good to go tomorrow. My secondary is also in my bones, it was on my sternum that a lesion reacted to the chemo to show up on a repeat ct scan. I’m hoping that as I’m HER2+ they will agree to keep me on Herceptin and Pertuzumab for as long as it is working - I see the Doctors at the end of the month when I hope to be given the 👍 Also having Zometa every 6m for 2 years initially. Had the first one in March. And have Letrozole daily. Had a lovely day thank you, and the sun was shining which makes the countryside look so beautiful. Xx
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20-05-2018
09:15
Hi Anne, fab wedding yesterday they so made it their own, and seemed to enjoy it all as did the rest of us! I am doing ok, general aches but manageable and fatigue but again I’m working out what i can and can’t do, so still learning! Got another 10 days until I see the doctors, when I hope to have my treatment plan agreed, so for the momemt I’m feeling calm and even have times when I don’t think about cancer at all. That’s certainly progress! Still waiting for my first counselling appointment. I hope you are doing ok and managing the side effects of your treatment. Do you have good support? I am off to see my daughter today, can’t wait! Have a lovely day everyone. Xx
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12-05-2018
08:17
Thank you Nicky and Anne. It’s good to know there are treatments that are working. Gives us all hope. Xx
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11-05-2018
06:29
Hi Anne, having a good day today. Was signed off from consultant radiographer yesterday, which has made me realise that all of the primary treatment has now finished. Which is good. Now the emphasis is on keeping any rogue escapee cancer cells away, for as long as I can, by continuing with Herceptin, Pertuzumab and Letrozole. Walking in the woods seeing the fading bluebells, and returning across a field with cowslips was my beauty for the day. Shame it’s turned nippy again though, have had to dig my hats back out again. Still not got enough hair to keep my head warm! Have a a lovely weekend. Xx
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