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Summer60
Member
since
18-05-2014
16
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4
Hugs
27-08-2020
01:30
2 Hugs
Thanks, Pawsome. Wise words. I guess I was anxious that no-one had got back to me and assumed (stupidly), that since I had secondary breast cancer, that I wouldn't get forgotten about. I guess that is how the NHS is now. However, I'm a medical secretary in the NHS, for a less important strand of medicine than cancer, and we always make sure that no patient falls through the gaps - new patients are made their first few appointments in advance. Once they're in the system, it's harder to forget about them! There is a definite lack of organisation with my Oncology team (BCN is off sick, and no-one is picking up her emails), and it is very stressful. I'm really glad the Palbociclib has suited you into your 12th round. It makes me feel hopeful going forward.
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27-08-2020
11:20
I've just finished my first cycle of Palbociclib ok, bloods were ok, but I have a couple of mouth ulcers. I hadn't heard from the oncologist as to when I should start cycle 2, so phoned up to find that they had forgotten about me, and that it would be a few days before they were able to get the Palbociclib!! However on being told about the mouth ulcers, oncologist suggested I wait a week anyway, for them to go away. She forgot to do the prescription, so I managed to get my lovely GP to do it. However, he was sceptical (like me), that I should be taken off the Palbo for the whole of the second week. Has anyone had experience of this? Many thanks x
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27-07-2020
08:46
1 Hug
Hi Woodsbonsai and Pawsome Many thanks for your replies. My hair is very thick, so hopefully I will keep some of it. Can you still use hair colour, do you know? Hope all is going well for you.
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27-07-2020
12:22
Hi Susie As far as I'm aware, Jane McLelland's protocol was created to be used alongside cancer treatment and not instead of it. Have you spoken to your Oncologist about different treatment options? Some treatments are kinder than others. Best of luck to you whatever you decide to do.
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27-07-2020
12:14
Hello I have recently been diagnosed with SBC in ribs, hip and spine, with possible lung mets. I have been given Anastrozole and will be starting Palbociclib on Friday. One of the side-effects states hair loss. Do you lose all of your hair, or does it just get thinner? Would I need a wig? (Not a lot of time to get one)! Many thanks
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26-06-2020
05:15
Hi Gillyflower and Daylightdancer. Many thanks for your responses. It is true that I shouldn't worry until I get the results, but it's hard, isn't it? Pain is definitely not from osteoporosis as had a DEXA scan as well the other week and my bones are strong - apparently nearly 0% chance of breaking a hip in 10 years. I did wonder wryly to myself whether I would still be alive in 10 years time! The bone biopsy was to take a sample of a lesion that is between my lungs which is not giving me any trouble - it is my leg and ribs that are the problem . I had to lie on the CT scanner whilst they moved the needle in, avoiding my heart and arteries and then re-scanning quite a few timesto see if they had the right place. It is quite marvellous what they can do, isn't it? Results in 7-10 days. The consultant did mention radiotherapy for pain relief, and I've heard it works, but does it make the pain worse initially, as I have heard it can do? I will definitely try your ideas of acupuncture and hypnotherapy. Best of luck to you both xxx
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23-06-2020
11:54
1 Hug
Hello. I had breast cancer in 2011, Have been fine, but was rushed to hospital in great pain a month ago. After CT, bone scans and a colonoscopy they found a lot of hot spots in the ribs, (front and back), sternum (which apparently is in a mess), and right hip/leg. It's likely to be bone mets I guess. I have a bone biopsy tomorrow. I am on Fentanyl patches and paracetamol, but they don't work for long. The pain I am in overcomes my fear of the cancer returning. I was wondering if any ladies out there are on pain relief that works, and does the pain go away once treatment starts? Many thanks
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20-05-2015
09:25
I think it depends on each woman's personal dx and treatment. For me, I was told in 2011 that I would have 5 years of Tamoxifen followed by 2 years of Letrozole. As far as I'm aware that hasn't changed for me. There has been a lot of research and trials carried out in recent years that have shown that hormone treatment for some women is beneficial for longer than 5 years and that the benefits outweigh the risks. I feel that the treatment plan I was offered is the right one for me. You could ask your oncologist how she has come to that conclusion regarding your treatment, but at the end of the day it's your decision. Good luck!
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20-05-2015
08:52
It could be because Tamoxifen can rarely cause liver enzymes to rise, as is the case with me. It's not on the contraindications leaflet for some reason, but when I saw a liver specialist after the enzyme reading kept rising, he agreed that the Tamoxifen was probably to blame. However, he did say I could see out the treatment safely (I finish Tamoxifen in Autumn 2016 and will switch to Letrozole for a couple of years). I used to drink a glass of wine daily before dx, now I only have about one glass of wine about every other month, otherwise I get a bad stomach ache if I have much more. Now I don't really miss it. Our livers don't really like alcohol, but I think if you can tolerate the odd drink now and again then that's fine. After all, stress is the worst thing for us, and wine is incredibly relaxing! If you find you start getting stomach ache or discomfort on the right hand side just below the ribs, then see your GP who can run blood tests to check your liver function. As I said, it is a rare side effect of Tamoxifen, which is an excellent drug and has saved many lives. Cheers! (Lifting glass of fruit juice)!
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25-04-2015
11:02
Dear Ladies I finished 2 years of Zoladex in September 2013 and am still on Tamoxifen. I too had about 8% bone loss, although my bone density is still within the normal range. I found the Zoladex gave me dreadful joint pains, so I spent most of the two years on it hobbling about and feeling miserable. Taking painkillers upset my liver (as it doesn't like the Tamoxifen so subsequently my liver enzymes are high, although I have been assured that I can see the treatment out safely). When I stopped the injections, I slowly found my mobility became much better and can now run up and down the stairs with ease! I still have some side effects from the Tamoxifen - depression, and weight gain mainly, but a small dose of Venlafaxine helps with the depression, and I can lose weight if I put my mind to it. Sometimes my legs are very stiff if I sit for a long time, but that is getting better, and I don't get so many hot flushes now. My periods didn't return, so cannot answer that for you, although now at 54 I wouldn't expect them to. However, I had blood tests to check my hormone levels recently and they are not low enough to switch to Letrozole. So I guess I will be on Tamoxifen for another year at least. The original plan for me was two years Zoladex, five years Tamoxifen and two years Letrozole. I take it that all of you ladies had Zoladex instead of chemo? Yes, it has been tough going, but these treatments have been proven to work and I keep telling myself that it's not forever. Good luck to you all - I hope it isn't too tough for you.
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22-11-2014
06:17
Hi Dollie I had the same as you three years ago - 15 + 5 boosters. Yes, my immune system was knocked out for about a year. I got all sorts - colds and stomach upsets, and when I got shingles about 3 months later, I'd been feeling so under the weather that I didn't notice I had it for a couple of days!! I can't blame chemo for this, because I didn't have it, so it must have been the rads. Anyway, now I have to say that my immune system has never been better. It's just a matter of time, really. I hope you'll soon be feeling well.
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15-07-2014
09:28
Hi I've had trouble getting hold of Teva brand Tamoxifen as well. I contacted Teva and they said that they will start distributing their brand of Tamoxifen again in August. They didn't explain why they've temporarily stopped doing it. I have told my pharmacist and have asked them to try and get it in again next month. Meanwhile, I've found that Generics brand aren't too bad, but am looking forward to using Teva again.
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15-07-2014
09:25
Hi I've had trouble getting hold of Teva brand Tamoxifen as well. I contacted Teva and they said that they will start distributing their brand of Tamoxifen again in August. They didn't explain why they've temporarily stopped doing it. I have told my pharmacist and have asked them to try and get it in again next month. Meanwhile, I've found that Generics brand aren't too bad, but am looking forward to using Teva again.
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21-05-2014
11:41
Many thanks for your replies. I didn't have chemo or a wire put in either, so I guess the clips are multi-functional. I've had two mammograms since my WLE and nobody mentioned them, so I guess I was startled to see them mentioned on the CT scan report. Glad too to hear that they won't set off the airport scanners!
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21-05-2014
09:34
Many thanks for your replies. I didn't have chemo or a wire inserted either, so I guess the clips have multi uses. I've had two mammograms since the WLE and no-one has mentioned it, so I was just startled to see it on the CT scan report. It might explain why my breast is still a bit sore nearly 3 years later though!!
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20-05-2014
08:53
Hi. I had a CT scan recently as had been having stomach problems, which showed an inflamed liver (probably due to the Tamoxifen, although that's another story)!!! However, I was concerned to see that the scan had picked up 3 surgical clips in the breast in which I'd had the WLE in August 2011. Is this usual, does anyone know? Many thanks
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