Breast Cancer Now Forum

Hi Gemini, very happy to share. My primary diagnosis was in 2008 aged 38, had spread to local lymph nodes only, so had lumpectomy, chemo (3 FEC and 3 taxotere) and 6 weeks of radiotherapy. ER and PR+, HER2- so, being pre-menopause, went on Tamoxifen. Suddenly had a period in 2010, so had ovaries removed then and went on Letrozole for 2 years then back to Tamoxifen until Nov 2018.  Swollen leg in July 2019 led to diagnosis in October 2019 with secondaries in my lymph nodes throughout my torso, down to my groin, including on the tubes that go into my lungs. Also mets in sternum. Before I started treatment, I suddenly felt very breathless so went to A+E when the PE was diagnosed. I was put on Clexane injections and the onc says to stay on these not go for the tablets because we secondary girls are more susceptible to blood clots. It took a good few months for the clots to dissipate, I struggled to walk more than a few steps without getting out of breath, but slowly this has improved, and I think I have gotten better at giving my self the jabs now as bruising isn’t as bad! I use 1 side of tummy for 4 weeks, then move to top of leg for 2 weeks, the top of other leg for 2 weeks, then other side of tummy for 4, this works for me. Hope that’s enough detail, but do come back to me if you have any queries, if I can help I will, that’s what’s good about this forum. All the best Kinden xx ... View more

Hi, Looking back (now on cycle 14) it was horrid the first cycle, but then I think partly I was still reeling from the shock of diagnosis. And I also had a diagnosis of pulmonary embolisms a few days after my secondary diagnosis, so quite a lot going on. With hindsight, I wish I had been easier on myself and taken some time off work, as it takes your body a while to get used to the drug. I only had 1 day off sick, and that was because I had spent the night in A+E. For me, I wanted to keep things as normal as poss for my kids then aged 13 and 15, and going to work was how I did that, but I should have thought of myself. I felt at the time that if I took time off it was me giving in to cancer, which I wanted to avoid. You will find what works for you  All the best, Kinden xx ... View more

Marvellous news xx ... View more

Hi Gemini I had blood clots in my lungs not leg, ie pulmonary embolisms. I have been injecting myself with Clexane every day for over a year and my onc wants me to carry on doing it for the rest of my days. It took a few months for me to be able to breathe properly again, but I can now and am even back to singing in my choir, which I love. All the best, Kinden ... View more

Hi  I was I initially advised to take Ribociclib in the morning (just over a year ago) but now the advice is to take it at the same time each day - I think a few hours either way is ok, as long as it is roughly the same time each day, so I take it in the evening now as I can feel a bit out of it s few hours after taking it, and obviously this is easier when I’m asleep rather than at work mid-morning. all the best, Kinden xx ... View more

Hi Dolly, you have had lots of wise words from people who get it and really understand. My primary diagnosis was 12 years ago aged 38, and secondaries last October. I felt like I had fallen into an abyss of unknown depth and width, but little by little I have become used to a new normal, a different me, and you will too xx i am responding particularly because of your breathlessness. I had quite severe breathlessness which developed pretty suddenly, after my secondary diagnosis but before I started treatment and went to A+E. It turned out that I had pulmonary embolisms, for which I was prescribed a daily injection, which I have to do for the rest of my days. We are more at risk of blood clots as I understand it, it might be worth raising this possibility with your team if the breathlessness is really bad. All the best and do come here when you need advice, we all do. Kinden xx ... View more

Great news Pawsome xx ... View more

I take Calceos which is prescribed by my onc team, I think it is calcium and vit D. Good to read about the positive effect of Vit D on Covid, didn’t know that Kinden x ... View more

Hi Liz Sending hugs from a fellow 51 year old.  My primary was 12 years ago, and secondaries diagnosed last October in my distant lymph nodes, which seems quite rare, was initially told I had lymphoma up biopsy showed bc. I also have it in my sternum. Less than 2 weeks after my secondaries diagnosis I was also diagnosed with a pulmonary embolism, so things seemed quite bleak for me last hallowe’en, but here I am to tell the tale, luckily responding well to treatment.  the waiting is awful, I really hope you get a plan soon and it’s a good one for you. take care and hugs kinden xx ... View more

Hi lommey  I just wanted to give you a hug and say that I hope you see someone soon and get answers to your questions - at least the delay has meant that you have time to process things a bit and get a list of questions ready.  I’m a little similar to you in that my primary diagnosis was 12 years ago, when I had surgery, 3 FEC, 3 taxotere and 6 weeks of rads. I was then on tamoxifen/letrozole for 10 years (as ER/PR +) then last year I got a lump in my groin which caused my leg to swell. Had CT scan and was told I had lymphoma, but the biopsy showed it is in fact stage 4 breast cancer, and it was everywhere throughout my torso and abdomen. I have been lucky in that all this has responded well to fulvestrant/ribociclib combo but I also now have mets in my sternum which seem to be a bit more stubborn 8 months on.  I hope that you get some answers soon and a chemo plan which helps you, I don’t know much about triple negative I’m afraid. take care and hugs  Kinden  ... View more

Hi girls, I have fulvestrant too, I’ve had 9 doses now and I think it hurts for longer each time, but it’s worth a few days’ discomfort for the good it does.  I also have to inject myself in the tummy every day (because I have/had a pulmonary embolism too) for the last 7 months, so it is covered in bruises, but again I think worth it! Good luck to you all. Kinden xx ... View more

I've never heard of that, but would like to know more as I have mets in my sternum. All the best, Kinden x ... View more

Hi Lynnie, You don't say what treatment you are on? I'm on Ribociclib, Fulvestrant and Denosumab, 7 cycles in. I do have some dark spots on my face, which developed in the first couple of cycles. They haven't got any bigger and my onc says nothing to worry about. I am white with really quite pale skin, and the spots are lightish brown. hope you're ok Kinden x ... View more

Hi Deebs, really good to hear that you're doing so well so so long, it so helps those of us in your slip-stream. I have been in this boat for 6 months and recent CT scan showed that tumours in far away lymph nodes have all shrunk away (1 was 3cm!) and bone mets are stable, so not growing. I'm on fulvestrant and denosumab as well. Hi Lynnie, my primary was 2008, had surgery, chemo, rads and tamoxifen for 10 years, and secondary came along a year later, so pretty similar to you in terms of disease.  Good luck both Kinden x ... View more

Thanks Rosie. Glad to hear your WBC has improved, this Ribociclib does seem to be good stuff Kinden xx ... View more

Hi mateface 67 (great name by the way) Yes, certainly. I am on Fulvestrant and Ribociclib, and Denosumab as I have some mets in my sternum too. Mine is ER+ and PR + HER-. I am carrying on on the same regime.  Good luck Kinden x ... View more

Hi Sal and Rosie, Hope your bloods are behaving better Rosie.  As for me, I had a phonecall last Thursday offering me a CT on Friday morning. I checked and the machine had not been used on Covid or Covid suspected patients, so I went for it. Hospital was virtually deserted and super clean, lots of PPE so I felt confident to have the scan. I now have the results and my lymph gland tumours can't be seen, they have shrunk away, so I just have the mets in my sternum active now, they are described as 'stable', so not growing, which is such great news and I feel so pleased. All the best to everyone Kinden x ... View more

Hi mateface, i googled it and it might not be cancer, but wait for your scan and advice obviously. i was very interested to read your post as my metastatic cancer is in my lymph nodes, the largest tumour was in the tubes which connect my lungs, (but everywhere in my abdomen, down to my groin, was diagnosed because one of those made my leg swell up), and I hadn't heard of it travelling just to the far away lymph glands.  My primary was in 2008, grade 3, 5/7 lymph nodes, so had surgery, chemo, rads then 10 years tamoxifen, then due to swelling in leg they thought I had lymphoma, which would have been bad enough, but in fact it is stage 4 bc. Anyhow, the purpose of my message is firstly to say I know it's hard not knowing what it is, but it might not be that bad, and if it is stage 4 I hope you get some comfort from the fact that 6 months on the tumours have all shrunk away. good luck and I hope you get your diagnosis and treatment soon Kinden x ... View more

Hi Sal, i'm ok, glad you seem to be too? Are you still getting your treatment during lockdown? i'm on the 6th cycle of Ribociclib, fulvestrant and denosumab. There is some doubt as to whether I am getting the denosumab next time but I think I will get the others. People seem to have different experiences depending on where they live, hope you get yours safely. Was due to have a CT scan ahead of my next onc appt, but haven't had a letter even about it. chased up and was told that I am in "vetting" with the radiology dept, to see whether they are going to offer it to me or not. This afternoon my onc appt, due to be next Monday, has been cancelled, and I got the shielding letter today too, so am having a cancer-centric day, which I try not to do between appointments. Am a bit freaked out by the shielding letter. It's a bit late now, and I have been normal with my teenagers and husband, not planning on changing now.  How are you doing? Kinden xx ... View more