Breast Cancer Care Forum

Hi Dot, my heart goes out to both of you. You don’t say what dosage your partner is on but I’m on 75 mcgms, 2 weeks on and 2 weeks off. It took a year to get the right dosage and rest periods for me. I had an occlusion in my right lung with the first dose and spent two weeks in hospital on oxygen so I know where you’re coming from. Fortunately my other organs weren’t affected. Have you asked about the newer drugs Ribociclib and Aminociclib(?) which are apparently kinder? You don’t say where you are based, but can I suggest that you look for a centre of excellence for cancer and get a second opinion, or just a second opinion in a different hospital. There are always good doctors and great doctors aren’t there? I believe that Letrozole was the go to drug for bc and there have been good success stories.  As for descending into despair I can understand that. Through my Onco I accessed help from the psychological services as my body was so exhausted I wanted to stop the meds. I also attend my local Maggies centre which has nurses and psychologists on tap as well as yoga and TaiChi tutors. I also attended sleep workshops and a meditation course. All of this helped to build up physical strength and mental resilience. Macmillan also offer help and advice and these can be accessed online initially. Massages are offered in my hospital although there is a bit of a waiting list. I’ve found them to be very relaxing and energising. I know the nurses here would be a very good source of support and information for you. I hope that you and your partner find some way forward. Wishing you all the very best.  X ... View more

Hi Lucy, I think things have to go at your pace, and I’m hugely disappointed for you. To have three sessions cancelled is , I think, unbelievable as well as unacceptable. No one can put a number on how long it will take people like us to benefit from treatment. As another forum member says there are good therapists and not so good. Remember that coming through this treatment shows that you are both stronger than you look and braver than you feel. You have shown yourself to be an articulate and balanced person and I am sure that things will improve for you. I’m sending hugs and positive thoughts, and to you too, Mexico. Keep going. X ... View more

Hi Cheffy, I go swimming do aqua and TaiChi. I have lymphodaema as well as a stiff shoulder and my nurse is very happy that I swim. I found the exercises utterly utterly boring 😝 Heat soothes my shoulder and I have a heat pad which works wonders. Good luck 🍀 ... View more

Hi Lucy, I accessed help through my Onco as I was having a tough time tolerating meds and got really down. Before my first session I was asked to fill in a questionnaire which my allocated psychotherapist read and then understood my anxieties before we met. At the first session she asked me what I wanted from them and I burst into tears and said I no longer recognised who I was and needed to like who I was now after all my treatments and being diagnosed with mets. Like your sessions it all seemed a bit chatty but it was very purposeful and I was given little homework’s to do so I could reclaim my life. I initially saw her every week then two weeks then monthly. She talked about ending the sessions but when I was anxious she added another couple. I was never told I had a certain number of sessions so I’ve been very fortunate. I attended sessions for just over seven months and knew when I was independent and it was time to stop.  I did score highly on anxiety levels but not on depression. I grieved for the person I was, and once I accepted she was gone I began to look at who and what I now was. So I suppose acceptance was the key to moving forward. I discovered I was a lot stronger than I thought .Without Rachaels’ help I would have given up on my meds as I was in hospital monthly as I was not tolerating them. Bless the NHS 😇  ... View more

Cuttlefish, the best advice my Onco ever gave me was that Google is not a doctor, and the Daily Mail is not a medical journal! Just stay away from Mr. G as it is years out of date and always fatal 😱  My advice is to ring up your BC nurse, I’m assuming you have one and get in to have the breast checked. No point waiting and worrying yourself sick about the situation. There are lots of pdf files on here which are useful but I think you need a look see from a professional. X ... View more

Paris, good luck with the neuts. I was in and out of hospital monthly due to mine crashing and I’m afraid I’ve found nothing to help. There wasn’t much the hospital could do either, but when I was in a bad way ( neuts of .05) they gave me gsf injections for a few days and I did pick up. I take Manuka honey daily for sore throat and ulcers and find it quite magical. It took a year to get me stable but I’m doing great. I’m on 75mcgs, 2 weeks on and 2 off. Unfortunately some supplements do interfere with both Palbociclib and Letrozole so I would check with your Onco. Keep in mind there is no research to provide evidence that they work but just lots of anecdotal evidence by vulnerable people like us who are willing to give anything a go. 🤫 I started off by buying loads of stuff but then have adjusted my diet so I include loads of natural herbal ingredients  in it. The Royal Marsden cook book is a great source of information. Best wishes with your treatment. My mets haven’t grown in three years. X ... View more

Hi ladies, interesting piece on BBC news re supplements. My Onco is not averse to my taking supplements but likes to check what I take in case of contra indications with my cancer meds. C ... View more

Hi Rachel, sending a big hug. I’m sure someone will be along shortly to support you. Just wanted to acknowledge your post and wish you good luck with any treatments. X ... View more

Hi Mia, thank you for your very long and rather involved response. It took some wading through, I can tell you. Although I appreciate the sentiments behind the campaign I’m with Walsh on this. Im very surprised such a small number of people was surveyed to extrapolate such a huge a media campaign. Surprised and , yes, horrified that SBC people would actually approve of this title. Still hate the name, still turned off by it, will not, I repeat, will not identify with this name. Shi, thank you for reinforcing the expertise and professionalism available from the forum community. Let’s hope it’s used in the future. Annie x ... View more

Hi ladies, just dipping in and out and found you. Not in the same boat but can relate to platelets story as my neuts kept crashing on Palbociclib. At one point I was .05 instead of a minimum 2.2. After a  hospital stay to get rid of a lung occlusion which the Palbociclib caused I started on it again. I have had a couple of rest periods , or holidays as I like to think of it. A bit of r& r for my poor old body! So as Fiona says, why not think of it like a rest period ? Wishing you all the very best. Annie. X ... View more

I used them throughout rads. Not too strong a dose. Used Aveeno spray oil after bathing and showering. No need to rub in when you’re knackered . Just spray and leave, like an oven ready turkey. 🤪. X ... View more

Super news. It would seem you are well looked after  💐. X ... View more

Thank you Saskia. It’s been a real body blow as we in the NE were all so proud she was going to be a pioneer for new BC treatments, then the brain mets just made it impossible. I believe her family would welcome your input as they are reeling from this. Totally unexpected.  ... View more

Thanks for this , Andy. Very informative and easy to understand. Love your warnings too. I do worry that very vulnerable people will latch onto CBD  without due care.  I’ve done a screen shot, too. I’m so sick and tired of people talking about CBD as a cure for cancer. I’m sure the NHS would prefer it to the expensive meds we do get. We could all be cured from cancer and happy so very cheaply! Unlike one of the posts, I have tried legal CBD oil and found it ineffective for my joint pain. If I’m asked about it in future I’ll point them to my screen shot of your post. Oh, while I’m on here, can I just say that reading is not research . Research is funded, has a hypothesis, a trial and an outcome. Google does not have a medical doctorate and is years out of date😡 Right, rant over.  ... View more

Lots of warm baths with Epsom salts, ibroprufin gel or tiger balm, massages, hot water bottles or heated gel pads BUT the very best advice..,,,TaiChi and Aqua aerobics!!!!!! TaiChi exercises muscles and releases natural pain killers,👍 and aqua in the warm water is LUSH 🤪   Onwards and upwards, Jubelu.  ... View more

Hi Fluffball,  I’m pleased I read your second post as your first one read so negatively I was a bit, very, concerned. So , basically A&E is rubbish so why go there? It’s full of sick people!!!! I have an alert card to carry from my hospital and as soon as my temp hits 37.5 I’m admitted. I’m afraid it does tend to zoom up alarmingly, but I haven’t been there for five months so that’s great. I was thinking of naming a ward after me as even a little scratch when rock pooling saw me in hospital with sepsis 😱 I think you’ve had an incredible array of health issues and can only say how pleased I am that you have confidence in your Onco , always a plus. I’m sure that your very sensible questions will be answered and you can make a reasoned decision. Also please take on board what people are saying, that the chemo myth does frighten people off. I was on FEC-T so know about mouth issues, or rather, I don’t as at the first sign I took manuka honey which sorted it for me! A miracle complementary bit of goodness. Wishing you all the best for your next meeting. X ... View more

Hi At, just wanted to acknowledge your post and your anxiety. I’m sure members with similar experiences will be along soon. If you want some medical facts why not post on the nurses section? They are such a support and so knowledgable. X   ... View more