Breast Cancer Care Forum

Hi snoopy fan and welcome to the forum. One of the big problems with dexamethasone (or should I say two big problems) is the munchies, and the overstimulation of the brain which creates havoc with sleep. May I ask what dose you are on? Over the years I have had to take dex with some of the chemos I was on and I found I could hardly sleep for a whole week at a time! If I did manage to sleep it was filled with very psychedelic dreams. Each occasion I only had to take dex for 3 days - 2mg tabs x 3 a day. You need to make sure the last dose of the day is taken before 5.30 pm - if you still aren't sleeping bring it forward even earlier. Fingers crossed you don't have to stay on them too long.   Dawn xx ... View more

Hi Wendy, I am only just a catching up with posts and wanted to respond to yours. How are you doing? I wondered if you had any results yet as to whether it is bone mets or not. I know it is so hard waiting to find out what you are facing, especially with Christmas rapidly approaching. My initial diagnosis was a long time ago now - back in 1990 I had my first primary bc and over the next 12 years I had several recurrences, finally losing both breasts. In 2002 I developed really painful sciatica and couldnt put my weight on my left leg. Hospital were very good and same me quickly - no messing about with GPs! - and secondary bc was dx extensively thru my bones. Why am I telling you this? cos I have lived with 2ndaries now for 14 years. Most of them I kept fairly active and did quite a bit of travelling. It is only the last 3 years that life has been a bit of a struggle so far as mobility goes. I haven't had to cope with chemos over the secondary years as my bc is her2 positive so for 10yrs I was on herceptin and bone drug zometa. I think there are quite few of us who have had bone mets for several years. Treatments have improved so much since my bc was first diagnosed.   I do hope that your news has been good - but we are all here to keep you company if it isn't. Do come and let us know. Dawn xx ... View more

Hi tournesol, I wonder if you are like me - keep falling asleep throughout the day. I sleep really well at night and am away as soon as my head hits the pillow. But as soon as I have had my brekkie - sitting in my armchair, I fall asleelp again. I thing it's what they call fatigue, and I have found this a problem for years now. One of my oncs way back suggested I could give dexamphetamine a try. I don't take it regularly but there are times when I really do need to be awake and alert. Hubby and I run our own business from home and although I don't do very much these days I did look after our accounts, now I have a bookkeeper, but I still need to get stuff ready for her. On those days I will take just one pill and it really does help. It just gives me a break sometimes when I get fed up with sleeping so much. When I told my  GP I worried about taking this sort of pill - she laughed and said it was prescribed for kids with adhd at a much higher dose than I was taking!   When I discussed the sleep problem with one of my hospice nurses she suggested having set times when I lie down on my bed and sleep - set the alarm to wake up say after one hour and teach your body to form a habit. I don't know if this will work 'cos I haven't tried it yet but pass it on for what it's worth. ... View more

I havent been around for a while as I went through a few weeks of some of the worst pain I have ever experienced and it left me exhausted. Nothing wonderful or amazing about that! But I thought it might have completely spoiled something I was looking forward to and that is what I want to share with you all. My lovely hubs & I celebrated our Golden wedding anniversary on 30 July. We actually got married at kick off time when England won the World Cup (footie) before many of you were born. The pain stopped 5 days before the planned celebrations and we were able to really enjoy the day with over 70 guests. I have to rely on a scooter or wheelchair now and everyone was amazed that I lasted the whole 5 hours without needing to rest/sleep.   I never thought when I was diagnosed 26 years ago that I would live to see this milestone. I have 'known' my OH since I was 14 when I was at school. In those days - no internet - just pen & paper and I had many penfriends including my husband to be :). We met when I was 18 and after 4 years of corresponding had developed quite a bond which just went on growing when we met. 3 years later we got married amidst quite a bit of criticism and people saying it would never last. Yes, there was a lot of prejudice around back then but we proved them wrong.   I'm still free from that awful pain (just the usual pain now that I can keep on top of) and was able to cancel the ct planning & rads with the approval of the hospital. They have said just call them if it returns and they will put it all in place again.   Dawn xx ... View more

Like you Waffles, I too have extensive mets in my spine plus pelvis, hips (all round that lower area in fact) and a soft tissue tumour on the spine has wrapped itself around the bundle of nerves that exits the spine at L2. The amount of pain, particularly nerve pain, from that is horrendous. I have struggled to get that pain under control for years. Gabapentin (Neurontin) and then Pregabalin have certainly gone a long way to help control my nerve pain. Some say that Pregabalin is better - one of the reasons being that it is available in many different strengths so a lower dose is going to have fewer side effects. Pregabalin starts at 25mg up to 300mg (with 6 other strengths in between). You might not need such a high dose as the1800mg a day Gabapentin (the lowest dose they do). I think the main reason Gabapentin is prescribed is to do with cost. The side-effects are quite scary but I think it pays to refresh your awareness of them from time to time. Sometimes it is hard to know if the symptoms we experience are side effects of the drug or of our cancer! For instance I struggle with tiredness (fatigue) really badly and that is one of the side effects of pregabalin/gabapentin, but it could be the cancer (tumour load) as my pain consultant puts it) It might also be because I am on quite a lot of morphine as well!!!   It does sound like you have had a very good response to Gabapentin and very quickly too. What dose did your GP start you on Waffles?   Dawn xx ... View more

hi bumpkin, how did you get on yesterday? Did you tell your onc about the hip pain? It was so long ago that I was diagnosed that things have changed a lot since then and I can't remember if it is normal to scan at this stage. Have you had any such as CT or bonescan. Don't feel bad that you didn't think to mention the hip pain before. When you have just been diagnosed all these odd pains pail into insignificance when you hear the word cancer. But you have realised very quickly that they are important. I hope that it has nothing to do with your diagnosis but better safe than sorry. I hope your onc has arranged for you to have some scans and I hope you will come back and let us know how you got on.   Dawn xx ... View more

I was a bit surprised when I realised my last post to this thread (just 3 down) was in 2009!! At least it shows we can still resurrect threads from a few years back and they are still relevant. My tumour markers still continue to be done regularly each time I go for treatment for extensive bone mets, although that treatment has changed since that last post to the thread. After 10 years on herceptin and pamidronate/zometa I am now on kadcyla plus zometa. I get the results of those CA15-3 tms along with the other blood tests on the same day. As for the tms they haven't really changed that much but my onc seemed to think there was some significance in the fact that prior to changing chemo in 2014 the markers were around 22-27 but after the change went down to between 16-20! I found that interesting as all my blood tests for this tm are in the range of normal but for me that slight shift did indicate changes. They can be a useful tool but can't be relied on alone.   Dawn xx ... View more

Apologies - I have just spotted that I hadn't come back on this thread. Thank you Carolyn & Marirose for your responses. The hospital did redeem itself - secretary of consultant got back to me that morning to apologise - the lady whose voicemail box I had left message in was sick and this one was standing in for her an worked part-time. I was asked if I would like to come into the trauma clinic that afternoon but bring a book lol! but I really wasn't kept waiting at all and the doctor I saw was very thorough. Had another OPG (x-ray that goes right round your head taking an image of your face with all the teeth, jaw & soft tissue. My suspicions were right and I had another infection so I'm back on the antibiotics for 2wks. I had to almost laugh at pharmacist when I was waiting for the prescription to be processed. She said " oh is this right? You must have a very deepseated infection to need such strong abs and such a high dose". At least they do seem to get to work very quickly and within a couple of days the pain stopped. The doctor said the consultant wanted to see me in 2-3wks - and then said she had best come with me to make sure the receptionists didn't say Can't be done! which was brilliant - I didn't have to do battle and they couldn't have been more helpful. I think if (probably when) this happens again I will need to call them as soon as pain starts niggling because it always seems to lead to full-blown infection. Trouble is no sooner dp you get rid of one problem than another one starts up :(. I've had a very sore elbow for many weeks and put it down to the fact that I have to use a rollator for support at home and it puts a lot of pressure on elbows & shoulders. But the last few days the pain has spread along my upper arm with pain in shoulder and lot of pins & needles in upper arm. This coming week is my week for chemo/zometa so on Tuesday I have to go for bloods and clinic and I will have another moan about this. Apart from doing an xray a few weeks ago and telling me maybe to see my GP about it I'm not getting anywhere. I need to be very sure that it is not cancer related before seeing my gp.   Blanna what news of yourself - has your pain got any easier? Sorry if you have posted somewhere else about this cos I could easily have missed it.   Sending hugs to all you lovely ladies xxxxx   Dawn   ... View more

I have to confess that I am taking ibuprofen just now!! (case of do as I say not as I do LOL) Besides all the prescription pain meds I take for the bone mets I am struggling with pain from ONJ so am taking paracetamol and if that doesn't keep the pain at bay long enough I then take ibuprofen, trying to limit them to just 2 doses a day. What I hadn't realised is that the dose on the info sheet states no more than 3 doses in 24 hrs so it always pays to read the info even when you think you know what it says. I'm feeling quite grumpy about the whole pain thing just now. The consultant at the max fax unit told me last time I saw him that if I had problems to ask to see him urgently. I was cheeky enough to ask him how difficult that was in his hospital (not my usual one), He said I should tell bookings that he (Mr.D.C) had said they were to give me urgent appt. It didn't work - she is off sick so I am told - her voice mail box is full and I just keep getting sent round in a loop. Finally today they put me through to one of their team leaders - after speaking to her the line went dead (sound familiar to anyone) I called back via main appointments no. and after about 10mins got put through to same team leader again who apologised and said the on-call max fax doc was in the middle of something urgent and had asked her to get my phone no. so he could call me back. Did he? Nope. By then too late so I will be trying again tomorrow morning if they havent got back to me. If I don't get anywhere what do you think I should do (answers on a postcard.......) I think we will just turn up at the hospital and make a noise. My poor OH is recovering from having a G.A. and biopsies of his prostate but is willing to drive me to the hospital (going to tape his catheter bag to his leg so he doesn't have to worry about finding a loo). I'm wondering if it is all the dope I am on that is making me quite laid back about all of this.   Dawn xx ... View more

Hi ladies, sorry to be a bit late coming to your thread. I wondered how you were all getting on, especially Pippie. Do you have a PALS ( Patient Advice and Liaison Service ) in your hospital - I think many of them do have. You might find it helps to go and have a chat with them - ask if it would be right for you to request a 2nd opinion. They will tell you the best way to proceed with the problems you are having with your onc. At the start of my 2ndary dx back in 2002 (maybe a bit before that even) I started to get a lot of swollen nodes around my collarbone and down the sides of my neck. I had other symptoms too - Horner's syndrome which affected one of my eyes where the pupil does not dilate at the same rate as the opposite eye. I also had started to have my vocal cords affected and sounded quite hoarse at times. My onc didn't seem too concerned about these symptoms but hey I was under the Royal Marsden and trusted them. When the lymph nodes just under my jaw near the ears started getting bigger as well they tried to do a biopsy with ultrasound but just weren't able to get a hold on it! I was put on chemo and the nodes all responded well but when I finished the course they came back again. It is hard to remember the sequence of things now but I know I developed pretty severe sciatica after hopping up and down on a stool moving things around. I suspected something wasn't right and I think my onc did too when I called them. They had me in very quickly for a bone scan and found I had very extensive disease in my bones. Often a lot of lymph node activity can indicate things are going on which is why I think you need to press for that 2nd opinion and get things checked out. There is no way your lymph nodes are enlarging due to an infection etc. not with the other symptoms you have. Pippie I hope I haven't been mixing you up with one of the other ladies posting here - as I can't get back into the rest of the posts here to check. I just think you need to know for your own peace of mind what is going on and I think PALS might be the way forward for you.   Sending love & hugs Dawn xx ... View more

Hi syers,   I think you have really done the right thing to press for that mri. No one should be in pain for that long without getting answers and I think that once you have got those answers you will find it easier to cope with whatever it throws up. It is the uncertainty and not knowing that drives us mad at times. Do stick with us and let us know how it goes on Friday and then when you get results because there is so much experience here from those dealing with pain issues and bone mets. I have posted elsewhere about my own experience with this diagnosis so I won't keep banging on about it too much. Just to say that I have had bc for 26 years now and 14 of them with extensive bone mets where all my spine is damaged, particularly where there are soft tissue tumours that have caused nerve root compression. But once diagnosed it is usual to be put on one of the bisphosphonate drugs which are very successful in helping to heal the damaged areas.  Mine are also in my skull and those responed very rapidly to treatment, as were those in my ribs and collarbone. I have quite a lot of damage to my hips & pelvis.   Mari rose I was interested to read that you refused rads. I have done that on number of occasions when told I could have it help with the pain. My concern was that they don't often revisit an area that has been treated and each time I didnt feel the amount of pain I had warranted rads at that time. What is so hard in making that sort of decision is that none of us knows how long we have got. If it's not long then it makes sense to have the treatment sooner rather than leave it. I would never ask how long I had though because quite honestly I don't think they know. I have had my lower spine treated twice now with a 2 year gap between each rads. The skin over quite a large area is quite burnt!   stresshead I'm sorry to read that you have  been dx with bone mets now. Have you started on denosmab yet? If not do remember it is very important to get any invasive dental treatment out of the way before you start and make sure your dentist knows you are being treated with it.   Dawn xx ... View more

i debbie - coming to your thread a couple of days late but wanted to say welcome. How I wish the internet & forums had been around when I was first diagnosed in 1990 but through years of frequent episodes of recurrences and new primaries I felt very much on my own. You have done the best thing coming here and talking to others who will understand what you are going through and in time you will be helping others to come to terms with what they are going through :). I didn't have to cope with the double whammy that you have had to cope with as my secondary diagnosis came 12 years on from my first primary and it was then that I was dx with extensive bone mets - they seem to have gone everywhere without my being aware until I got severe sciatica. I hope that you will find some encouragement when I tell you that I have been living with the bone mets for 14 years now. My cancer has never been hormonal so the range of treatment available for er+/pr+ has not been any use to me but after my 2ndary dx they discovered I was her2 pos so I was able to have herceptin along with zometa - another one of the bone drugs.   Grrr.... I started this reply very late last night and am trying to finish it this morning but am running into problems getting it to post on the forum so I will stop at this point before I lose it all. (remembering to copy and paste before I hit the post button again!)   Dawn xx ... View more

Hi Blanna, I have been reading your posts here and feel so sorry that you are having such a bad time with pain. It really can make you so miserable :). Did you get a chance to talk to anyone on Friday? I wonder what your oncologist has done to explore the cause of your pain and if he/she has tried other pain meds for you. I know my consultant (pain clinic) does not like patients taking ibuprofen because of the risk of stomach ulcers. Has your hospital got a pain clinic and have you been referred to your local hospice. They really are the experts on pain management and are trying so hard to drop the image of only caring for the dying. They do so much more than that including pain management, helping sort out benefits, liaising between gp & hospital, plus therapies like acupuncture, reiki, massage etc. I know a lot of my pain is caused by nerve damage and gabapentin or pregabalin are good for that type of pain.  Also if you are being given oramorph for breakthrough pain they should be assessing how much you need so that  you can be prescribed MST which is slow release morphine taken 12-hourly. If you don't get on with morphine it is worth asking to try oxycodone which like morphine has a breakthrough version and slow release. Some get on better with this which I think is a synthetic version of morphine. The only problem with most of these drugs is that they do make you quite drowsy but that is more bearable than being in constant pain. Can they pinpoint where the pain is coming from and can the area be treated with radiotherapy. If you had contact with a hospice/macmillan nurses they could help you work out what questions to put to your oncologist. I do hope you can get some answers & treatment to help - don't put up with pain.   Dawn xx ... View more

I joined the first of these themed live chats today but half-way in at about 1.30 I thought conversation was lagging a bit - no one seemed to have anything to say. 5 mins on and I realised the names of those present weren't showing! Yes - I had lost my connection to the chat room - but I have tried several times to log back in without success. Has anyone else had a problem with their connexion? ... View more

Carolyn - don't feel bad - I found it quite funny :). Hope your appointments go o.k. today and you aren't left a quivering wreck. Strangely I have come to feel the Sutton Marsden is a 2nd home - I have spent so much of my life there! and am greeted by so many staff each time I go - although very few that have been there as long as I have lol. I am there both today and tomorrow. Today is blood day & clinic - seeing onc and if my platelets are o.k. then back for kadcyla and zometa tomorrow. I always feel a bit on edge now though because I know one day I am going to be told I can't continue on kadcyla. Those platelets get lower each time. I can't have kadcyla on the 3-week regime any more as it takes about  6-weeks for my platelet count to be o.k. They don't even bother to check at 3 weeks any more so at least I do get a good break between appointments. I am a bit concerned that my pain has returned to the uncomfortable level it was at before I started on kadcyla soI do wonder if it means 6-weekly isn't enough and the tumour is growing again....I must stop trying to 2nd guess what oncy is going to say! I recently had a MUGA scan and was certain that was going to be at an all time low and my bp was up every time, my legs were swollen etc.etc. but no - it was the highest it has ever been :).   If any of you are at the Sutton Marsden today or tomorrow I am easily spotted on my little black 'luggie' scooter to come and say hi  - or run & hide. I am there for 1.30 bloods & 3 p.m. clinic today and if all is well treatment tomorrow at 2.30 in the MDU. Dawn xx ... View more

I hope you can all hack it for as long as I have too. btw Julie - it is 26 years now!!!! I was dx in 1990 with my first primary then the next 5 yrs was the longest break I got without more primaries. If herceptin had been available earlier for her2+ primary dx perhaps I wouldn't even have got 2ndaries because I didnt get herceptin until 2yrs into 2ndary dx when bone mets had spread extensively. At least then everything calmed down for a few years but the bu**er had already done too much damage for that to last. But these new drugs are making a difference I am sure - although primaries may not realise just how much that year of herceptin might be doing for them.  It is quite fun if you have the time and inclination to read through some of the long threads on the site - and inspiring too.  Love to all my boney pals and the others that joined us 'cos we are such a great bunch 🙂 lol. Carolyn I really had to laugh at your encouragement to others to "do a dawn".   Dawn xx ... View more

I had quite a chuckle when I saw the title to this thread. 2 years ago we added an extension to our house. One of the rooms was to be a new bedroom for me, just off the main lounge. Obviously should I need to spend more time in bed I would be in close contact with what was going on around me. The builders were then moving on to do work on the room I had been occupying so we had to pack up everything including wardrobe contents. I have to confess that 2 years on and most of my things are still packed up. I don't have the energy to sort it all out now and most of my clothes don't fit as I have lost a lot of weight. It is also quite hard to 'let go' of a lot of these things. So I have the problem of the memories that make it hard, the energy or lack of, and the problem all of us have as we get older we acquire even more if we haven't been disciplined in the way we deal with clutter generally.  I do wonder what our poor kids will do when we are both gone and they have to sort everything out.   I think if it you are losing sleep over it then it is a good idea to start clearing some of the clutter. It will probably give you quite a lot of satisfaction to make a start. ... View more

Hi Chris, like you I would be very apprehensive at stopping a drug that had kept me alive for 10 years. And like you I was on herceptin for 10 years! although my bone mets were very extensive. I believe too that I am still here today because of that drug. I had been on several chemotherapies from 1990 to 2004 but none of them had held back the spread of breast cancer at the primary stage. It was early days for herceptin in the UK and my onc must have been delighted when he thought of checking my her2 status and found it was +++. At that stage I had a lot of lymph node activity around the chest and neck area and at the start of herceptin they all shrunk and have never given problems since. My situation does differ though because my onc felt that although it was very slight there was some progression and if that was to get any worse I would be heading for nerve root compression and with a lumbar spine in quite a mess surgical intervention wasn't really an option. The one thing that really bothered me and still does is that it would be highly unlikely that I would be allowed to go back on herceptin although my Consultant has said he would appeal if it came to that. I have been on Kadcyla, which is part herceptin, for 15 months now but am struggling with low platelets so can only have it every 6 weeks . So do check if NICE would allow you to go back on herceptin if you needed to. Hopefully he is just testing if you would like to stop treatment - so if you are not happy with that make sure he knows.   Dawn xx ... View more

I have not been following this thread because I felt I had nothing to contribute as cutaneous mets was outside of my experience with breast cancer. It's funny how the passing of years can dull the memory - or has  'chemo-brain' got something to do with that lol! But when I was looking at it yesterday it suddenly struck me that I have been incredibly fortunate to have escaped the awful time that some of you have experienced with this. Back in 1998 (I think) I had an appointment with my breast surgeon for a check up after my first mastectomy. He seemed to be unduly concerned about a few of what I thought were flea bites (yuk). I had a couple of persian cats and we live in the country and these were an inevitable part of what 'goes with the territory'. If he had not acted so quickly and what I thought was very drastically with the situation my story would be quite different. He immediately did biopsies on 3 of them and sent the tissue off the be analysed. It came back as cancerous and my next appointment was with himself and a plastic surgeon. The op they did was a VRAM which is similar to a TRAM but vertical instead of horizontal cut. He had to remove a huge area over my chest wall down to the ribs - thought he might have to remove some of the ribs if it had got into them so you can see why I thought it all sounded quite drastic. I hadn't realised the implications back then. I suppose there wasn't so much information available and we didn't scour the internet as we do today (was it around then?). It had happened because my first experience with bc was quite a large tumour in the breast in 1990 which had responded so well to chemo & rads that it wasn't visible any more so I did not have any surgery then. When it recurred in 1997 I kept getting told it was just hardening of the breast from the rads but I was convinced the bc was back and by the time I convinced them it had spread throughout the breast tissue  and I had a mastectomy but there were still some cells left in the skin around the mastectomy scar. Those 'flea-bites' were the first sign of skin mets starting up and I am so thankful for my quick-acting breast surgeon. Sadly he has been lost to us as he too became a victim to cancer.   Obviously from your posts they can present in different ways but anything appearing around the breast area needs investigating, and fast. Redridinghood posted wise words when she said GPs know nothing and to insist on seeing a breast cancer specialist.   I am struggling to keep my eyes open now so will say goodnight. I hope for all of you that the treatments you are on will bring good results. Dawn xx ... View more