Breast Cancer Care Forum

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 ... View more

I will be happy to leave a review about CBD oil. I have been using it for a long time and it helps me cope with headaches very much. I work as a school teacher and headaches are common for me. I used to take pills in huge quantities. From this I began to hurt the kidneys and stomach. I was advised to try CBD oil. I tried it and the pain went away. She never came back. I take it in small doses. It doesn't affect my mind. I don't get Jolly or mad, I just get over the pain. I buy CBD oil here thehempire.com ... View more

Hi there would you mind recommending to me the herbalist from Edinburgh as I live in Scotland and it would be easy to travel to Edinburgh thank you Gina K. ... View more

Hi Kellie, I see that you've put quite a few posts on here and lots of links...we can all appreciate that diagnosis is overwhelming and it sounds like you could do with having a chat with your Clinical Nurse Specialist (CNS) or someone from Macmillan with regards to all of your questions. They can help answer some of those for you and hopefully put your mind at ease a bit. I have the same type of cancer as you and i'm also taking Palbo & Letrozole but haven't changed my diet. The Letrozole that you are taking will be working on reducing the  oestrogen. There seems to be an abundance of information on diets and foods with regards to lowering intake of oestrogen including cancer charity websites so you may find those useful. But as i said before, your CNS or Macmillan are a good resource or even a nutritionist. This website Breast Cancer Now actually has a page you may find useful even though it's targeted at those with recurrence  https://breastcancernow.org/information-support/facing-breast-cancer/living-beyond-breast-cancer/your-body/diet-lifestyle-breast-cancer-recurrence    With regards to all the links you were sending on trials etc it's probably best to speak to your oncologist. Normally with trials they are extremely specific with regards to eligibility criteria, but have a chat with your oncology team if it's something you would like to look into. Good luck with it all!! ... View more

It’s not a great op to be fair but my sternum mets are the only thing growing and my liver and lung are both stable. My onc doesn’t really want to take me off Kadcyla and not do I and sadly the radiologist at Marsden says the tumour is positioned in such a way, radiotherapy would be dangerous 😩 😩 😩 ... View more

Hi Gina, My primary has never been found, on any scan, but due to a biopsy of my lymph nodes my Oncologist was confident that I had breast cancer, which had already spread to my spine by the time I was diagnosed in 2015 with Er+ Pr+ Her2-ve...I’m thinking you must be Her2+ve as you mention Herceptin? I’d been going for routine mammograms for 14 years by this stage, all clear, as I had first presented with a lump in my axilla back then. A biopsy was attempted then but was unsuccessful, so it was decided to do the routine mammograms and observe. My Oncologist told me that while it isn’t common, not identitying the primary happens more than you might think. Like you I avoid all processed sugar, and eat a mainly organic whole food plant based diet, if I eat any meat it is organic and grass fed from a trusted farm, any fish is wild caught, not farmed, and I don’t drink alcohol...maybe a small glass at Christmas or birthday, but that’s more to keep everyone else happy, (I get migraine headaches so never drank much anyway because it was a trigger). Although my diet has been questioned from time to time, it suits me and I don’t feel deprived in any way, infact I wouldn’t want to change it. I am blessed to have an Oncologist who I get on with very well, infact she has been a tower of strength to me, she knows about my diet and supplements but says as my scans and bloods are good she can’t really argue. I did lose weight initially, down to what I used to be before the menopause, it then stabilised and sadly since I’ve put a few pounds back on, but now I do occasionally eat things like rye bread and white potatoes...so more carbs...than I did back then. I found medjoul dates and nuts were great, I had them every morning, (still do), both to curb my sweet tooth (which has now gone) and to help with calories. As has already been said, I believe my diet has helped with my treatment as I had very few side effects initially, and they have now subsided. I’ve bought many books over the past four and a half years, ‘How to Starve Cancer’ included, it is a very interesting read with some very successful results. My favourite book though is Radical Remission, I would recommend it to anyone with any illness. I understand your concerns as initially I kept wondering myself, what if it isn’t breast, but I knew I was having a scan in three months and reassured myself with that.  Take care, Kate x             ... View more

Thanks Mexico. So are you not on any treatment now? I'm doing cold cap so I'm hoping I don't lose my hair! Still feeling exhausted but my hb was low on Monday which won't help. Just waiting to see what it is next week before they decide whether to transfuse. Take care, Deb xx     ... View more

Hello! I'm so happy that I have found this blog because I also went to the Hallwang Clinic recently and I would like to meet more patients from there to share my and your experiences. My initial c contact to the Hallwang Clinic was the urgent need or a quick cyberknife therapy. Unfortunately, the offered appointment in the UK would have taken weeks before I would have eve had a chance to talk to the radiotherapist so I decided to take it in my own hands a look for cyberknife centers across Europe. My oncologist was also very open about my search for a sooner appointment and I finally had chance to perform a cyberknife just days after I contacted the Hallwang Clinic. The costs were acceptable for such a quality of care. I paid 10 TEUR for the cyberknife of my brain mets. Since my breast cancer is HER2 positive the oncology team in the UK wanted to start lapatinib plus capecitabine but they were also very happy about the idea of German oncology team that has been able to organize tucatinib instead, which was not available in the UK. I can just say that I'm really impressed by the Hallwang Clinic oncology team and in times of corona it furthermore shows that the German health system is one of the world´s best health systems. I'm really happy that I can still travel to the Hallwang Clinic and that they can provide a waiver document for beeing able to enter Germany in this difficult time of Covid-19. I would be happy to read more from patients who went to the Hallwang Clinic ! Really cool that I found you! ... View more

 Hi I have had the government food parcel delivered for the last 6 weeks despite changing my answer to the food question 3 times! I'm ok for supermarket delivery so don't need the parcel but the man delivers it so early in the day I cannot ask him not to leave it - will put a note on the door as you suggested Nicky. We have been giving it to an elderly neighbour on her own so it's being used. Hope everyone is coping ok & getting their treatment. Helen x ... View more

Hi Deanna, So far so good for you too! I had 2 treatment delays of one week before they took me down to 400mg for cycle 5. Apparently no evidence that the lower dose changes outcomes xxx ... View more

Yo! That's sound good! Best wishes! Do you know something about karma and numbers? Maybe it could help you and become your amulet? As for me, it gives me a kind of hope. Check the number 6666 meaning. It is a very good and significant number for all, who is ill. Good luck! ... View more

Hiya   i have just been diagnosed again  , I was  positive and now triple negative.  ... View more

Hi Lolabun, it sounds like you need someone to take this seriously. I would ask for a referral to a maxilofacial consultant. No one believed I had a problem until I got to that point. I understand the pain you’re experiencing, I had tramadol and this did help. Without antibiotics I fear you will keep on suffering. I had doxycycline as my consultant said the pain was caused by infection. Go back and make a fuss, tell them you can’t cope with the pain. I’m really sorry you’re in this situation and I hope you get some help soon xx ... View more

Could it be Letrozole? I was already on it when the ciclib’s were licensed so can’t have until I change treatment. Understand that feeling! Hopefully you’ll find some grapefruit soon...Kate x ... View more

Very interesting discussion. Thank you guys and learned a lot. ... View more

Hi I am 3 yrs into Letrozole and I had the same issues as you. I spent the first months going from brand to brand some better some I crawled upstairs on my hands and knees. I have a very supportive GP who believed me and understood my issues. I eventually had Femara the original version on a private prescription for 2months to see the difference, it really was like magic yes still some joint pains but such improvement. In our area my GP had to request from the local Medicine Management Committee if I could have Femara on the NHS which they agreed. So try all the different generic brands keep a list and symptoms with each brand if you find one that suits stick to it and ask for that brand all the time. Femara is much more expensive so persevere and don’t give up as we are on this a long time and it’s really important not to stop without a fight. Talk to your GP and get them onside. I have been a nurse for 40 years and always told patients the generic versions were the same not anymore the fillers they use can cause the side effects. So good luck and treat this as in a logical process of elimination of brands. ... View more

Hi there, thanks for getting in touch, Yes, the study is recruiting in Exeter, there's some more information about eligibility on the Cancer Research UK website (https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-study-looking-at-diet-and-exercise-during-chemotherapy-for-breast-cancer-that-has-spread-b-ahead-3#undefined), but please e-mail me on lifestyleresearch@nhs.net and I'll put you in touch with our recruiting team at the Royal Devon and Exeter Hospital. ... View more

Hey all ive always wondered this like community champion some hospital do bloods check yunour mskers nine are usually up snd down think they were on the rise last time however as my Co says they didn't reflect my scans my first scsn after diagnosis was November i goy diagnosed in june showed shrinkage im not seeing my oncologist till April first i was thinking surely she will then put me in dor scan late April early May xxxx ... View more

Hello, I would like to join in here too please and send love to everyone going through this. My primary was found in January 2017 after finding a lump in my left breast. I had a mastectomy and was prescribed Anastrozole. I was very unlucky to have a chest wall recurrence on the same side later the same year. After the lump was removed I then had five and a half weeks of radiotherapy during 2018.  Last year I had a chest x-ray as I'd had a cough for a few months and then after a Ct scan they discovered cancer in my lymph nodes and secondaries in my spine. I too was devastated to get this news and was unable to process it for quite a few weeks. I am taking Palbociclib, Exemestrane and have Denosumab injections every four weeks. My PET-CT scan in January showed the cancer in the lymph nodes have reduced by almost half and the spine mets are stable. The only side effects I have noticed has been loss of nose hair (!!) eyebrows and now my hair is thinning a lot. I have been able to continue working full-time and only feel tired on the fourth week of the cycle. I feel so lucky to have been able to have the Palbociclib and hope it gives me many more years! So glad that we all have each other on here for advice xx ... View more

I’ve sent you a private message xx ... View more