Breast Cancer Care Forum

Hi mini mad    My hair ‘before’ was very fine, very straight and had a couple of patches of grey. Now it’s wiry, wavy, and all shades of grey, with none of my original colour left...and without an appointment to have it cut in the foreseeable future it’s going to get out of control!  I used to pay to have a curly perm (a long time ago, but for many years!) so I’m not totally adverse to the waves, but these don’t lie flat and as they grow they get more out of control. I’ve never needed hair straighteners before..thinking I might have to invest!!  I’m 2 years from the start of regrowth so think I’m stuck with it. It really makes you question what damage the chemo did to our bodies, to have altered the hair follicles permanently (for me).  Take care, stay safe.  Butterfly xx ... View more

Hi Daffodil, good luck tomorrow.  I too didn’t wear anything other than a soft vest for a while and then Sainsburys crop top bras with a softee, but really only when I went out.  It took me over 12 months before I asked for a silicone prosthesis, and then found Nicola Jane a better fit for me than Amoena bras. Excellent online service (at the time) and exchanges and refunds were never a problem.  So I guess I’m just saying take it slowly, you’ll work out what you want to wear and when. Can I also just say about the exercises and radiotherapy..I really panicked when radiotherapy started as I didn’t think I’d have the range of movement they needed. However I was absolutely fine, so again just take it one day at a time.  All the best.  Butterfly  ... View more

Helena, so sorry to hear your sad news. Just to say I am thinking of you and sending you a hug.  Butterfly xx ... View more

Would be interested to hear from anyone who is on, or has tried this brand of Letrozole.  I have had Cipla for a year but pharmacist is having difficulty sourcing it 🥴 so thought I ought to try another type. I had Accord in the early days, but it caused terrible cramping and tummy upset so am a little worried about what I might expect this time with Sun Pharma. Cipla has been very kind to me, although I know it doesn’t suit others.  Any information gratefully received.  Butterfly x ... View more

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 ... View more

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 ... View more

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  ... View more

Hi Nicky, they really are crafty b*****s aren’t they? xx ... View more

Hi Plasem I hope you get the answer you need soon xx ... View more

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 ... View more

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 ... View more

Thank you Helena, you’re so kind. Xx ... View more

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 ... View more

Thanks Jay, congrats on finishing herceptin. Hope the echo gives you good news and you can reduce your meds soon. Xx ... View more

Thnaks Chaffinch, glad yours are holding up well. Xx ... View more

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 ... View more

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 ... View more