Breast Cancer Care Forum

HI Silverlining I also have intense pain in back and chest. I find sitting torture!! I recently had the same scans as you and I was told at the moment everything is very stable!! If this is true why all the dreadful pain??? I just feel no one understands and my Onco looks at me as though it's all in my head. I'm so reluctant to go on morphine as it makes me feel so sick and weird. I just have 10 mgs of amytriptyline when I go to bed and then paracetemol in the day. Have you found any meds that actually work?  I am trying to work but feel I will have to go off sick again soon. What a dreadful thing this is!!! Sorry to sound so gloomy. I am actually a very happy positive person most of the time!! ... View more

Hi Gina So pleased you are doing so well! Congratulation on the award! I know what you mean about being involved in someting you enjoy and all thoughts of cancer just disapear. I also think that we have now had time to come to terms with it so that we now enjoy each day. I have been back at work for 3 weeks and loving it. I only do 5 hours 4 days a week but just lovely to be involved with 'normal' life again despite the back playing up!. Do you have scans every 3 months? I was hoping he would say 6 months this time as I feel all the radiation cannot be good!! I still feel unwell at the end of my three weeks of tablets but yippee I now have week off and then onto 6th lot x ... View more

Hi Annmat Glad you to have dry mouth. I totally agree with you about not being able to taste salt. I have been so dry that I constantly drink water for my mouth and have now caused low sodium levels in my blood!! It's all such a joy. It's great to compare notes with others. I saw on another thread that you were asking about PET scan. I would also like one as all my aches and pains are always dismissed as nothing! Keep me posted about your progress ... View more

Hi Gina and Kisqali ladies I have been back at work for 1 week and finding it very hard!!! The main reason is my back is torture and sitting down doing admin work is very difficult! I'm also getting very stressed as I feel I am letting my colleagues down as working in a hospital is so manic. Have you thought about going back Gina? Ramade I do hope everything works out for you. Lulu -How are you getting on? The Kisqali makes me feel very weary and my mouth is sooo dry! Does anyone else feel like this? Gina you seem to be getting on very well with it. What were the results of your Consultant appointments in August? so many questions!! xx   ... View more

Hi Ramade How were your results today? I was thinking about you as it's such an ordeal. I had my latest results last Friday and got so worked up about them. Oncologist said that at the moment he feels I am in remission as long as the Kisqali and letrozole keep working . I had made up my mind to ask for specific information but chickened out!! I still feel rough all the time so my mind can't quite believe it. Do so hope your results were all positive.xxx ... View more

Hi Ramade That is dreadful that you were told the wrong results!! I must admit I have lost faith in the medical profession even though I have worked in NHS and now in private medicine all my life. Each Consultant I see has interpreted my scan results differently. I now just listen to the Oncologist and hope he is right!! I to will be having scan results very shortly. Awful waiting for them. Do let me know what yours are . Fingers well and truly crossed for both of us x ... View more

Hi Gina and Lulu I had been wondering how you were getting on in Greece. Sounds like a great success. So glad you enjoyed it. Obviously the sun was good for your aches and pains if you only used one stick!  I go back to work on 3rd September but have been in a couple of times and found I was exhausted after about 3 hours!!! Do either of you feel really tired on this drug? I have never experienced tiredness like it as I have always been fit and active and never been able to sit still!! I just hope it is normal as you tend to read all sorts of things into it! Hope the Physio goes well but that just isn't enough is it? I have been playing tennis again and although I really pay for it with pain after it's worth it to be outside with my friends feeling normal [if not breathless!] Do keep in touch and think of me next Friday when I go for my scan results! x ... View more

Hi Ramade I am told that is first line like palbociclib. So sorry to hear you are running out of options. I have had 4 courses of ribociclib and will find out next Friday if it is working or not. What a roller coaster we are all on. Life just seems to be worry from one scan to the next. Difficult to live in the moment as people who do not have this are so fond of saying!! What is your history so far if you don't mind me asking? All the best to you. ... View more

Hi AngelSam I to have this pain and have had it since last October! I am now on amitriptyline 20mgs every night. I think it is beginning to work. My left leg tingles when I stand up with pins and needles. I am told by my Oncologisr that is is nothing to do with my bone mets but seems a bit of a coincidence. I agree that it is awful we have to have constant pain and being offered opiates which seem to destroy your mind don't help. I don't know about you but I have a real problem with sitting or lying down so I stand up and walk a lot to relieve it. I was first diagnosed in 2011 and found I had secondaries last September. So good to talk to other ladies in the same position as it can be very lonely! ... View more

Hi Gina and Lulu Great to hear from you both.  Have a lovely time in Greece Gina. It will probably do you the world of good. I would love to go away but could not even sit in the car long enough to get to the airport!! You both seem to do well on the ribiocilib. I can't understand why more ladies are not on it??I am on day 10 of my 4th cycle now. I don't feel too good today as had bone scan today and lying down for ages is so painful! How is your physio going Lulu. I think it does help the spine a lot doing exercises for core strength. I'm going back to work tomorrow just for the morning to see how I get on. Not been in since January so will have forgotten everything! Have a lovely holiday Gina. Let us know how you got on when you are back x   ... View more

Hi Gina   Yes I am on denosumab plus adcal. Have injection every 4 weeks but it will be 6 weeks this time as kisqali was started late. I was not aware it helped with the pain! I will be keener to have it next time! I have decided that when I see my Onc. at end of month I will be brave and ask more questions! We have just been to coast for 3 nights and yesterday my bone pain was horrendous but today I feel great!! Even with the longish drive home. Don't understand this crazy disease! Hope you have your holiday in Greece coming up very soon. It's so good to be in touch with you! x ... View more

Hi Gina I have seen Orthopaedic Consultant and Pain Management Consultant and they have no answers as the pain is at the base of my spine and my bone cancer is in the thoracic spine. I read a report from an MRI I had a few months ago and it said that I had extensive mets. in pelvis. When I asked my Oncologist about this he said it was nothing!!! Just don't know who to believe so when I see him on 31st August after my bone scan and CT I will ask for him to tell me honestly! I'm scared to but feel I should. If all is still under control then I am returning to work 3rd September after 9 months off. Just want to feel a normal person again! I'm so pleased you are going to Greece. I'm afraid I have cancelled 3 holidays in Lanzarote as they told me the hospital would not be able to deal with any emergency like neutropenia so we think we will book Tenerife in November. So nice to have something to look forward to. I keep drinking!! I have a dry mouth all the time so it's no hardship. Have a lovely weekend x ... View more

Hi Gina. Great to hear from you. You sound as though you are doing really well. Had my results yesterday and neuts. were up to 3 so collected my tablets today. I am still on 400 mg. I am like you and can walk for miles but sitting is awful unless the chair is hard and even then I can only sit for about 10 minutes but I won't take opioids so suppose I will have to put up with it!! Do you take any painkillers? Your community garden sounds a lovely idea. Make the most of it while the weather is so good. Keep in touch as I really appreciate hearing from someone on the same medication. Can't find anyone locally that takes it so I presume we are lucky??? Enjoy your garden ... View more

Hi Gina How strange I was thinking about you and up you popped!! I have been off ribiocilib for 15 days now as neutrophils were under 1. Had 2 blood tests with no improvement and just had 3rd this afternoon. Waiting to hear if I can collect my tablets tomorrow. I don't feel any different when I don't take them which just goes to show what a big part your mind plays in all this!! Still have my horrible back pain. Have CT and bone scan at end of August so will be scared when I see Oncologist for results!! How are you gettiing on with it and when are your next scans etc. So comforting to know someone else on it. I love the fact it is cooler now but see heat is returning!  ... View more

Hi Lulu I was wondering how you are getting on? Have you seen anyone about your back pain yet and if so what can they do for it? I can't find any solution for mine but have now been booked for epidural at the end of August. I can walk for miles but sitting and lying down is incredibly painful so I am constantly exhausted. I can't tolerate opioids so have to put up with it. I have just finished my 3rd letrozole/kisqali treatment. Had bloods yesterday but was rung today and told that I had  to be off kisqali for 2 weeks as wbc 1 and neuts 1. How are you getting on with it? Iwas down to 2 tablets this time and it still had a bad result!. Do you take 3 tablets? Are you managing to put any weight on? It's so difficult. I force food down all day and in 9 months have only managed to put 1 pound on!! Hope you are enjoying the weather. Too hot for me! Hope to hear from you.  ... View more

Hi Gina Great that you didn't have any problems. This month I have been much better and I am beginning to think it is the letrozole that is causing my aches and pains. How were your bloods after the 3 weeks? I go next Tuesday for my bloods and my neuts are always about 1 which is quite worrying. Do keep in touch snd carry on enjoying your greenhouse!! ... View more

Hi Thanks for responding! I am going to try the silk scarf as that sounds logical. I like to do sport and play tennis but can't concentrate because of the friction!!!  Some new joy everyday with this condition! I have the M&S bras and they are better fitting than far more expensive ones I have bought from specialist companies. I will probably go down the road of trying one more implant before I give up as having problem accepting a hole in my chest with empty breast!! Thansk again x ... View more

Hi Gina Just wondering how you are getting on with the new drug? Were your blood results ok on Wednesday? I am now 6 days into my third lot and only taking 2 tablets. I tend to feel sick and strange about an hour after I take them but it passes. I have started to take them later in the day as I have been on the american site for ladies on this drug and a lot of them say to take it in the evening as you then sleep through the worst part! I was wondering if you know a reason why we are told to take them in the morning?? A lot of them are also complaining of hair loss but touch wood mine is still growing back well after my intravenous chemo which ended in Feb. Hope you are enjoying this beautiful weather. I walked for miles this morning as its the only thing that keeps my back from hurting! ... View more