I tried Gone Girl but I couldn't get on with it....The Little Stranger, Sarah Waters I started it today...lovely, I'm drawn into it straight away. I have a room full of books. My bookshelves create a booky cavity wall insulation so I'm probably saving on the fuel bills.
Good for you for rocking at rounders Katie. x
Dawn - I hope everything went well today and you have got some answers. Thank you again for your advice. I have now written down my questions and I will ask to speak to the onc on my next visit. x
Doodlecat - I loved the ending of Gone Girl. Let me know what you think! I can picture it as a great film! I am now just reading a MC Beaton - Agatha Raisin book. They are very formuliac but an easy read. I am waiting for some books from Amazon to arrive - the new Jeffrey Deaver(Lincoln Rhyme series) eing one. I love new books - especially crime fiction. I have kindle and an ipad but I enjoy holding a book. If I had money I would have a library in my house. My hubby thinks books are clutter so even if I won the lottery I don't think I would get one.
Thanks Belinda for your words of wisdom - I won't tell a soul about the socks with crocs.:) It could be a game though couldn't it - a bit like Where's Wally, but spot the secondary lady on oral chemo!
Well I may have secondaries but I am not out - I amazed myself let alone my class of 7 year olds today when I scored 2 rounders! God knows how but I managed to wellie ( a Northern saying for hitting the ball hard!) the ball. To be honest it was the first time they had ever played and their fielding was shocking- so a fast walk got me round the bases. But still - I rock!!!!!!!
Katie sorry to come back at this again but do remember it is your body and you do have a say in what is being done to it! I think I have probably been a patient too long now and have been known at times to argue/disagree with the oncs!!!! You could try chatting to your nurse, although she might be wary of giving an opinion. Maybe even ask your onc if can delay going on the chemo until there is a more obvious reason for doing so, after all you are already on herceptin which is a good preventative. As I said in previous message it has kept mine which was very aggressive, reasonably stable for nearly 10 years! I wasn't sure whether to post this reply or not as obviously the way bc affects us all is so different. On your next clinic appointment could you ask to see the consultant instead of a registrar? I know at the Marsden where I am treated it is o.k. to do that.
Katie, I was fue to start Capecitabine last month after my tumour markers tripled and I had changes to my breast (primary tumourstill there). It was cancelled when I had to change Oncs. I read that thread Val mentioned and it would appear that a lot ofus can vope with it very well.
I am about two thirds of the way through Gone Girl and I am really enjoying it. Just hoping the ending doesn't disappoint. xx
Hope the scan goes smoothly and it helps to find out what's causing the problem Dawn.
Hi Katie, I had Capecitabine, for bone mets, for nearly 5 years. It was my first chemo but to be honest I never really treated it as a chemo. My bloods remained good all cycle through, I had no real tiredness. In some ways I found it easier than Arimidex. I kept all my hair and all my family would have the usual winter coughs, colds and I'd be fine. I did have some foot problems but recommend using creams daily and swapping them round often, I used Udderly and Eucerin creams. Because of the foot problems I lived in Crocs with Socks....but please don't tell anyone.
Hi Dawn - Good luck with your scan tomorrow. Let us know how you get on. I do hope they can sort you out!
The Registar seemed to be going back and forth to Onc today. The man himself didn't come and see me. I never really thought to ask if they thought the 'abnormality' was a real threat. At first I was told by registrar they would keep an eye on it and scan me in 3 months to give them a clearer picture. Then he went to Onc, came back and said Onc thought it wasn't cancer but gland damage or something and that due to my age saw no reason to scan for a year. He doesn't like to over scan. Then Registrar mentiioned going on Ibronic acid (I know I've spelt that wrong) as I finished my 6 shots of zometa (as per Christie policy). He went back to Onc came back and said they thought putting me on oral chemo would be the way forward as a preventative measure. The Ibronic acid wasn't mentioned again! I think I was just so taken aback I didn't know what to say. My nurse - who is a star - and is my regular at giving me herceptin said I had to go away thinking that both my bone and ct scan results were very good. I don't know what to think! I always go by myself for treatment now and with hindsight could've done with someone with me to ask the questions I don't think of at the time. Oh I did have radiotherapy on the side the tissue is showing but seemingly it was showing there on original scan.
I will write my questions down for next time though! Thank you for helping me to think things through. I just feel like I have got some normailty back in my life and then this comes along. Hey ho!
On a completely different note - I have just finished a brill book for those who like a good thriller - Gone Girl by Gillian Flynn. It was recommended in Good Housekeeping and was a cracking read!
Hello to all - sorry for not posting of late. Will try harder! xxx
Hi Katie :), Like Val says, it is nice to see you posting again too. I haven't been posting much because I find when I am not feeling too good it is hard to even find the effort to put words together :(. Everything I do seems to take so long. Have you asked your onc to explain clearly why he thinks it is necessary for you to go on a chemo at this stage. If Herceptin is working well for you it seems such a shame to use up another option. I think however well we cope with chemos they do take a toll on our bodies and I know I would want a very good explanation as to why. Do they think the 'damage' the CT scan has shown up again is a threat? Have you had rads to that area at your original primary diagnosis - and is it a possibility that has caused the damage. I know it can damage the lungs - and in the early days of my bc it frequently showed up on scans. Since I went on herceptin back at the beginning of 2004 I have been so fortunate in that I have not needed any chemo to control the cancer. (Dawn has fingers firmly crossed behind back! figuratively speaking - cos I'm not typing with my toes LOL) I have a CT scan coming up tomorrow - but this one has been requested by the London Hospital of Neurology as part of the investivation as to why I struggle to hold myself up straight now and what is happening to the muscles down my spine.
Hi Val - thank you for replying. The registrar said to think about going on it as preventative measure. He did also say that herceptin seemed to be working for me. I suppose with feeling ok I wasn't expecting him to suggest going on something else. My onc doesn't 'do tumour markers'! Or so I have been told. I am glad really they are trying to be pre-emptive (if that's the right word - my vocab has shrunk since all this began!) I will try it - anything to keep the uggers at bay. I will look up thread too - thanks. As for hair thinning - just getting used to having some. Have had it dyed blonde but yet to have more fun! Am putting weight on like I can't believe. I don't look anything like my original picture - I must get round to changing it.
Thanks again Val.
Did they ask you to choose to go on Capecitabine Katy? I was put on it as my TMs were rising and I wasn't feeling quite as good. . I had it for 6 months then had a break from the tablets for 18 months. I started again for 6/7 months and then had a break for over 2 years, Then when the markers started rising and I wasn't feeling quite so good I was put on it again. I found it an okay chemo. No loss of hair although it thinned a bit. I was recently on Taxol and I lost my hair and I found it much harder on that chemo regime. There is a good thread on here that I posted on. (Let me know if you cannot find it)
All in all I think you had really encoutaging results and I am glad you are enjoying being back at work. I have met other ladies in my hospital who contined to work on Capecitabine. Sometimes it can cause painful hands and feet and that happened to me. So they reduced the dose and after that things improved. But my feet were really painful. Not everyone seems to suffer from that though.
Glad to see you posting agaoin Katy. Have missed your posts but I know you have been a busy lady. Much love Val
Just got back from having my herceptin and just need to pick your brains please. I got my bone scan results 3 weeks ago and the Registrar was over the moon saying that my bone mets had reduced which he said was rare. The remaining mets in spine were stable. Today I got the results from my CT scan - again the good news was that my organs are clear. However there is an area between my heart and chest wall that showed up on last scan a year ago (which I wasn;t told about) which showed up again. Soft tissue density which has slightly increased. He went to speak to Onc and came back saying that the Onc thinks it isn't cancer but gland damage. Ok - I am going with Onc says as it suits me. The Registrar then says that I have to think about going on capecitabine. He will talk to me after my holiday in August and gave me some info. From what I can gather its a preventative measure.
I suppose I just wanted to know if any of you were on it for such reasons? How do you find it? The word 'chemo' scares me - I had EC and Tax and don't want to go thro that again. Can you carry on working on it?
This may sound daft ( and hopefully without tempting fate) I actually feel fine. Been keeping busy - enjoying being back at work.
I know I am very lucky at the moment and my thoughts are with those who aren't doing so well.
It was nice to see Val and Dawn posting again! Will be adding to gormless thread soon.
Thank you x
Glad to see you posting Val! I hope that holiday has done you a power of good. It has been such a difficult time over the past few weeks with Sarah's passing and lots of our friends going through very challenging times. There are times when the realities of this damned disease seem to knock us for six, but we must stay strong for each other, I am sure that Sarah would want that. It's easier said than done at times like this but hopefully we will prevail.
Lots of love to everyone and let's keep this magic thread going. It is a life line to so many people and Val, Dawn and others do so much to keep us positive.
Sending positive thoughts to Nina and her family ❤️
I have just seen a post on Facebook that Nina's (Broomsticklady)'s husband has submitted telling us that Nina is not well and has seen a new doctor. I don't want to say anymore than that but as her last post on here (2 pages back) explains she has not been well for quite some time. I am sorry to read that your sight has deteriorated Nina but hope that someone can read this out to you . I just wanted to tell you that we are all rooting for you and am sending all the strength I can muster through cyberspace. Huge hugs from us all, Val
Dawn I hope thet they can get soe answers to your recent problem shen you see the new doctors. I too have a stoop and was shocked when I saw my spine in the mirror when I was trying on my new swimsuit. I look as if I have been starving for months....not a pretty sight.
I am still reeeling from the shock of the sudden demise of lovely Sarah ( Cromercrab). I had no idea that things were so bad and really thought that she would be back home with her family once they got things sorted for her. I will miss her cheery posts and her sense of humour and common sense. Condolonces to her friends and family.
So glad to see a post from you Val. I had forgotten you were on holiday and was beginning to worry like Ramsfan. It does sound like you have been losing such a lot weight if the latest loss is 2.2kg! I too have gone down to a size 10 but nothing like the loss you have had. My weight had been slowly creeping up and went from around 8.7 up to 10.4!!! I had never been that heavy before and had certainly not been eating more than usual. I now have a choice of wardrobes depending on what size I am. Having been a 12 and going up to a 14 then back down to a 10 and hovering between 10 & 12 I now seem to have settled at a 10 and am waiting to see if they reduce my herceptin. It got increased when I hit the 10st.
I seem to have developed something they think may not be related to the bc! The Prof sent off my scans to the London Hospital of Neurology for an opinion on why I have developed quite a stoop over the past 6 months. The opinion came back within a week and said something about the muscles down my spine having atrophied and a possible myopathy (please no one googling that tell me what it is about - I started to then quickly decided not to go there!). At first I couldnt bear the thought of having to attend yet another hospital - and yet more driving for my poor OH. Then the onc said we were dealing with something possible quite unusual and it would be better to get an expert opinion on it. After discussion the Marsden agreed to do the scans the London Hospital want so I won't have to make unnecessary journeys up to London :). I know it is possible they won't be able to do anything to help but it is better now to find out in case there is something that can be done. I have found these wheelie things really helpful after the hospice loaned me one so am looking to buy one for myself. At least it will save me bumping into lamposts LOL.
It was so sad to read of Sarah's passing
Yes, Ramsfan I am still here!
I was away on holiday for three weeks and got back on Tuesday evening. We went to France and my daughter and her man came to visit us in the countryside and then we spent a few days with them in the city.
I had hoped to go swimming every day to improbe my muscles and to try to gain some strength after the chemo and other stuff going on. But I could no longer swim which came as quite a shock to me. I just am not strong enough. No muscles. So I just went into the pool and walked up and down and then help on to the side to exercise my legs. I managed a few strokes after the 3 weeks were up!
I had my Zolidronate on Thursday. I have lost a lot of weight but since I was at the hospitla in May I have lost another 2.2kilos and am now weighing about 8 stone 12 or 56 kilos. I am wearing size 10 trousers and it isn't a great look! So they are going to keep an eye on me and meanwhile I have to eat as much as I can including the stodgy cream cakes.
I am working hard on the red meat ( made a beef rRogan Gosh last night) and am back on the red wine again. My HB is also lowish and gone down to 9.4 so want to avoid another transfusion if I can. I am not breathless and feel better than I have for a long time. Making a curry from scratch is something I have not managed for many months so it feels great to be able to give my dear husband a rest from cooking all the meals. I even spent a little time in the garden today pulling up weeds!
However I did have a terrible upset tummy while I was away but now realise it may have been the result of being on anti-biotics for 4 weeks when I had that infection in my mouth ( necrosis of the jaw). I am now waiting for a CT Scan to be arranged for my face and another appointment to see my Consutant again. One of my TMs had gone down but sadly the other was rising. Hope I can stay off the chemo for the summer months. My hair is making an appearance. I went bare headed while on holiday but still put my short wig on when I go to the Bank or the shops. On Thursday the car park attendant at the hospital said he liked my new hairstyle ( well I have been going to the hops for 24 years now!) so I asked him if he would like to borrow it ( he had a very short haircut) . He siad he thought it was my own hair growing in! hee hee
Thanks everyone for all your support on this my favourite thread. Hugs to you all. Val
Suzanne, I had a similar pain but just in one leg. It started when I had to take a break from pilates (my intructor went travelling for three months) but happily disappeared when I restarted the exercises a few weeks ago. Of course in the meantime I had convinced myself it was something sinister.
Cromercrab (Sarah) had stopped contributing to this thread for a while. This is were I met came accross her. Her humour, upbeat attitude were amazing. she sadly passed away yesterday. Fly with the Angels Sarah. We will miss you.
Thanks Lucinda for your reply, I do hope that you can get those meds sorted soon. I went to my osteopath this morning and explained the pain I was suffering and she said that it was referred pain from my back (lumber) region that she has been treating me for. She then did some massaging of the back, hamstrings and front thighs. She told me to continue icing my back and keep pottering around to stay mobile. She also gave me some very light exercises to do. As soon as got up off that couch I felt so much better! Since then the pain in my groin has gone and although I still have some discomfort in my right hip, I am so much better and can walk!!
a good osteopath is worth looking for And paying for!!
I had the same sort of pain (plus pain down the leg) for over a year.They got so fed up of me complaining...the pain became so bad they sent me for x-ray in case there was a fracture.Also had bone/ct/mri but nothing looked untoward...oddly th opposite leg/pelvis has a lot of mtastaric activity showing but it had not bothered me (it has started giving me problems in the last few weeks).The problem was that I have as much arthritis in right hip as I do mets, but they eventually agreed to 5 blasts rads which I had a couple of months ago. The pain in the groin has gone but obviously the arthritis remains, and so do the walking problems and aches and pains. I really need to get my meds reassessed as my gp gave me gabapentin for the nerve pain, which I no longer have, and anti inflamatories the hospital gave me do seem to work better. Hope you get it sorted soon.
Thanks Belinda and Vercors, I am due to have CT and bone scans soon so hopefully they might shed some light on the problem. However I am also seeing my osteopath later this morning so will see what she has to say. thanks for your replies, it helps to know that others have had similar problems and that they have been resolved x
suzanne x x
I had something similar this time last year, the MRI showed no sign of anything suspicious. I went to see a sport physio, my pelvis was tilted, pushing a nerve too close to the muscle. It was rubbing against it.My pelvis is now straight and I am pain free.
Talk to your onc about it, to get some proper investigation done first.
xx take care
Hi, I had similar type of pains, I was ok walking but sitting still was really uncomfortable. An MRI showed nerves being pinched due to bone mets to the sacrum. I'd had the same area zapped years ago and had remained pain free until late last year. Thanks to the long gap between rads I was able to have a further 5 sessions of rads over the New Year which worked really quickly. But it may well be the gap you've had with Zometa has caused this sudden pain. I'm sure I have read here of other's having the same problem. Hope you feel better after your next Zometa.
Hi Bony ladies, i have been suffering with strange pain in the tops of my legs/groin area. Makes it difficult to walk. It doesn't feel like bone pain, more of a nerve pain or muscle pain. I am due my zometa which is two weeks late due to my recent holiday and this pain has developed over the last 3 or 4 days. i am taking naproxen and co-dydramol to quash the pain, but I can't think what could be causing this. Any ideas?
Hi Belinda, yes I had EC that finished in April 2011. After that I had a year on aromasin and then the last 10 months on tamoxifen. It is interesting to hear you talk about capecitabine and I have heard people who have said its doable. Just wondered which hormonal they might try with me next. Any ideas? Just hope to God that it hasn't moved to new organs!!
Hi Suzanne, I'm sorry to hear about your rising markers. Did you had any chemo before Aromasin and Tamoxifen? I went through hormonals first and then I started chemo. To be honest I thought having chemo would really impact on my quality of life but it has, so far, been doable. I had oral chemo, Capecitabine first and was kept on it until it stopped working. I had just over 4 and a half years with it. My second chemo will be finishing next week, Doxerubicin, 8 cycles. It's the first time I've lost my hair. I chose not to have the cold cap and I've been wearing Buffs instead. I haven't experienced any sickness or tummy troubles. Good Luck with your scans and I hope you don't have too long to wait for the results. x Edited to add there's still Arimidex, Megace and there may be more hormonals to try.
Thanks so much Belinda - I've just posted a looooong thread about the treatment I had in China in the Undergoing Treatment forum. Not sure if that is the right place for it - mods can you move it if it isn't? Thanks.
Hi everyone, just got back from Onc and he has told me to have CT and bone scan as my tumour markers are up. My last set were high and this set are higher! Hate the stress and my mind will be working overtime again now. So far I have had a year on aromasin which worked for about 10 months, then got progression, then 10 months on tamoxifen! What might be next if there is progression???
any advice would be appreciated. I am 8/8 ER+ and Her 2 neg .
Hi girls. Sorry to see that we have some 'newcomers' amongst us. Just wanted to answer a few queries that have cropped up. May be of help to some of you.
Denosumab - I was fine too on the first 4 - although I now have to have them iv with a cover of steroids/piriton due to allergic reaction and then observation for 6 hours- a whole day in hospital, no fun. But after the last injection I was feeling really sick, so will mention this before my next one. No flue feelings though , which were really bad on Zometa - so I am pleased about that. I also take Adcal tablets.
Scans: I see two consultants, not really by choice, but they rotate the clinic and are both nice and helpful. But one is very keen on 3-6 monthly CT scans, whilst the other one seems to think they are only necessary when new symptoms appear or b/t results change. So, take your pick. But I have 4 weekly b/t anyway, always before the Denosumab, so any new problems would be apparent I suppose. I have the CA153 once a year and the markers have stayed stable, i.e. not gone up since I started Letrozole.
Letrozole: yes, achy joint are VERY common, and I suffer with that too, as well as sore back and arms. Especially bad after sitting for any length of time when everything swells up and I can barely move. Take painkillers if/when required. But as the Letrozole shows signs that the secondaries are not progressing - last CT scan November - will ahve toput up with the side effects. I have also put on weight, although I am still quite active and not changed my eating habits, have hot flushes and generally 'menopausal' symptoms. But this drug seems to suit me better than Arimidex. Might be worth asking your consultant whether you can switch, sometimes one is better tolerated than the other.
Finty had a quick look that is very interesting. Look forward to hearing about your experience. I feel like I know you although you have not been about about as I have read this whole thread since I was diagnosed last October.
I haven't been on this forum for 2 years, and to be honest didn't really plan on checking in again, but I still have the link in my favourites and accidentally clicked on it! So here I am. So pleased to see this thread is still going and so many familiar names are still going strong - though sorry to see so many new ones have had to join it. I have to say I don't really like the redesign (sorry BCC) - seems much less user friendly than the old site.
My sincere apologies to all those that left messages for me that went unanswered - and to those that worried and feared the worst - I'm just now catching up with a few of them. I'm pleased to say I am very well indeed. It wasn't deliberate rudeness - I just stopped checking in one day and realised I enjoyed not being reminded of the cancer, so never came back. I've been able to spend long periods without thinking about it at all, which has been wonderful, and I've been so busy with other projects. Maybe I'll post an update in the secondaries inspiring stories - I do have some interesting information to share about a pretty amazing new treatment that I had in China - whole body photodynamic therapy (google NGPDT) which has completely changed the way I think about my cancer and the future. So more later.
Hi again Abbie, good to hear you're pain free! I usually have scans taken when I start a new treatment, they're then used as a baseline. I have tumour markers taken every 3 weeks, the CA15-3 markers, and my markers are usually a reliable indication of how well the treatment's working. I'm on tablet bisphophonates, Ibandronate and along with these the Onc prescribed Adcal D3 tablets. Good Luck with Tamoxifen.
Hi Belinda, thanks for your kind words. I was suffering lower back pain at the same time as I was referred for a mammogram after noticing thickening in my breast. Breast cancer diagnosis was therefore followed by a bone scan which confirmed mets in my spine - L1 vertebrae. Was waiting for oncologist appointment when severe muscle spasms in my lower back caused me to be admitted to hospital as GP was worried about spinal cord compression. Thankfully MRI showed no danger to cord. Had radiotherapy to L1 which within weeks reduced the pain I had been suffering and I am now pain free & on no pain relief. Have just finished taxotere chemotherapy, given with herceptin and zometa both of which I will remain on. Chemo has been very successful with bone met showing healing on last scan and breast tumour shrinking very well. Have lots of scans planned for next week and breast surgeon is keen to operate to remove breast tumour and armpit lymph nodes; final decision to be made next week. Looks like it will be a masectomy with reconstruction then radiotherapy. Also starting tamoxifen because as well as HER 2+, also ER +. Hoping all this works for a long time. Interested to know how regularly I should expect to have scans after all this, do you get them 6monthly, yearly or whenever you have new symptoms? Now that chemo is finished, as well as keeping my diet healthy with lots of juicing, I am keen to now consider supplements to help keep bone met at bay, do you or any other ladies have advice on this area? Loving all the support this site can offer and already so glad I have started to post myself. Hope in time to help others! Abbie
Hi bean bob and belinda. Thanks for responding, it is really helpful to know others have been through the same feelings on diagnosis and reassuring to know so many are living relatively normal lives. Will post again when I finally get a treatment plan. Thanks again, Marion
Hi Abbie, so sorry you have to join us, but you will find lots of support, friendship and a mine of information here. I was early 40's when I had my double whammy and didn't think for one minute that I would see my 50th but I did. I only have conventional treatments but I've seen new ones introduced since my diagnosis. What treatments are you having at the moment? Best Wishes. x
Hi again Mema 23, most of us feel a (little) better once we have a treatment plan. Hope you get more information and answers soon. x
Hi Mema23, I had 11 years between primary and secondary. I have now been 'here' a year, with bone mets in spine. My onc advises against biopsy. but I was ER+ then and I am responding to tamoxifen now. i am settled now but it was a massive shock after that time. all best wishes x
Hi ladies, I've been reading all your posts since my double (primary and secondary) diagnosis in February. Was in shock and denial for many months but your posts have really helped me understand this disease and the treatments available, hearing bone mets referred to as treatable is reassuring and posts from those of you doing well 10 yrs down the line give me much comfort. I'm 42 and have 2 small children so have a lot of living still to do. Thank you, Abbie
Hi Belinda, Thanks for replying. No idea on a treatment plan, it was a biopsy, but then surgeon said there was a risk of a pneumothorax so another wait for this weeks MDT meeting. Also still waiting for a ct on my brain, it's the waiting that's so hard. I feel that it's so long since my primary that information must be limited on my original tumours so would feel happier if I had open surgery on the rib which was also suggested might be an option. Whatever is ahead I just want to get started!
Hi Mema23, I'm sorry you have to join us but you will find lots of help and support here. I was diagnosed stage 4 from the very beginning so I expect others who have had the more usual gap between primary and secondaries will be more helpful. Do you have all the information from your primary biopsy? A lot of Oncs do seem reluctant to carry out biopsies and go ahead treating their patients on the information they have from their primary. But I know some here have had biopsies taken and changes have been found, eg a change to her2+. This must have been such a shock for you after all these years. What are your treatment plans so far? Best Wishes, Belinda.
Hope I'm posting this in the right place, all a bit new to me.
Hi all, mind if I join you? Looks more than likely I have bony mets on my rib and the back of my skull (unusual apparently). It’s 13 years since my primary, thought I was well and truly in the clear. Bit shell shocked really, nothing seems to be happening very quickly and found out yesterday the surgeon is not happy to do a bone biopsy on my rib as it is too close to my lung. Just wondering how on earth they will know how to treat me without doing a biopsy?
I'm really sorry to read your news Nina...I hope the treatments help in the best way possible and you are able to feel both comfortable and pain free during and beyond your next chemo. Far from sounding blunt I think you have explained your situation so clearly and eloquently. And as Ali has said there will be many of us here rooting for you. Take Care..x
Gosh what an awful time you have been having. So sorry to hear your news. Must feel so scary . Really hope that some of the treatments will slow it all down and give you some decent quality life for a bit. Hope you have got good support at home. This is the time to not worry at all about asking for help, both practical and emotional. Unaffected people feel so helpless it's good to give them something useful to do, like cooking meals etc. Plus there seem to lots of very supportive people on this forum, so I hope you will feel all of us out here rooting for you. Best wishes. Ali
Long time since an update from me - I seem to be mirroring Caron tho which makes me sad someone else is going thru what I am. I'll start with a new bit of text then for my eye sake will just copy in a bit of an email I send non cancereous frinds a but earlier so if this seems disjointed it is!!
About early May while inAlgarve I noticed long term nerve jangling in left side of fcae was getting worse and I couldn't see clearly in eye. Back to Uk Saturday, Tues at hosp for chemo check, blind in eye. Told to see optician which did - emergency referral to eye hopspital nex day. Eye man convinced new lesion in jaw bone where al 3 main facial nerves go thru, all wait CT scan. Ct scan supposedly OK so next request (10 days later - grr!) for MRI scan. This done in hurry last Monday.
Well, it’s never been said that I do anything in a conventional way. For most people with initial breast secondary bone cancer the path then is liver brain or lung secondary tumours, with them being treatable for a while and then either declaring themselves resistant or further tumours elsewhere developing requiring attention. For me it seems nothing will be normal. I am now blind in one eye, with that side of the face distorted as tho from a stroke, eating and speaking is hard without feeling there and a numb chin. About 4 days back the upper right eye socket went numb and is gradually creeping around with its non sensation. I had an MRI scan on my head on Monday to follow up the good results of my head CT scan earlier, and being a cynical moo I was concerned when they got the results but wouldn’t give them to me same day. All 3 oncs wanted to review them together on Tuesday. On Tuesday after review they wanted to take them to multi disciplinary team for further further review – see you in Clinic on Friday. Friday news is CT and MRI scans clear – Hoorah? Er No. This mean you have no actual tumours we can identify or treat, our most likely guess is cancer cells are in your meningeal fluid surrounding your brain and causing chaos with your nerves etc.
Due to ridiculous speed of left side deterioration, I pushed a bit that they bring forward the whole head radio therapy they were proposing for 3 weeks time just a tad, so if there was a chance of saving anything on the right side I could, and consequently I had my measure up, 2 new tattoos and first session of 4 rads on Friday. The hope is – no guarantees and not much evidence – just hope – that this delays at least progression from fluid into nerves and temporarily halts more damage. It’s a one off treatment – no second tries so we have to hope it works. Next in the onc’s shopping cart for me is a different version of the 2nd chemo I had during my primary treatment – it is a bit of a b*gger to tolerate, but this permutation apparently easier. I’ve said I’ll try it but I’m not going to kill myself with a chemo if I can’t take it – watch this space – it won’t be for about 3 weeks to give me chance to recover from rads - to go with them I get nice big doses of steroids to maleate the immediate side effects of the rads but gives me more to recover from.
Prognosis – not good. There is a form DS1500 used to fast track disability claims for people with likely less than 6 months to live – she offered to sign one of them. So it could be LT 6 months, which doesn’t mean it won’t be more, but it’s pretty unlikely to be double decades. Sorry if this is blunt – I kinda hoped you’d have got the picture from the preceding. Sometimes it’s impossible to package things prettily. Don’t know how many times I’ve said this but I’ve never meant it more – I am for once tongue tied so have absolutely no expectations of anyone else being otherwise. A few thoughts of us at the gates of hell might be appreciated and anyone who cares to join Jules in her lone Daily Masses for my lost soul will be appreciated if that’s your thing, as will any “just hurry up and get on with it”s.
If my other eye goes, David will have to go onto secretarill duty so any changes in style, quality of content etc please report.
Hi Ingrid, thanks. It sounds like a similar reaction.
4 treatment plans in 18 months! Sounds hard to cope with. I was on pamidronate and exemestane for about a year. The exemestane stopped working so now I'm on denosumab and letrozole. I'm a bit anxious that the letrozole might stop working, because I'm not sure where we will go from there. I've already had tamoxifen and arimodex.
I hope your present treatment plan works for a good long time! X
I've had 2 denosumab injections & about 48hrs after both of them I've had increased pain for about 7 days plus felt pretty rubbish. Then I'm relatively pain free & need a couple of doses of paracetamol only. I also have fulvestrant injections which is also meant to cause achey joints. So I'm not sure which injection is causing the increased pain in my bones. I'm just learning how I need to manage my recent change in treatment - 4th treatment plan in 18months!
Hi all and best wishes for you on this roller coaster, especially for those struggling with progressions and pain. I have been reading the thread regularly, although not posting, and feel for those who have had bad news.
Just a query for anyone who has been on denosumab for a while. I have been on it for about 3 months and haven't noticed any side effects until my most recent injection which was on Wednesday. Since the injection I have had increased pain and stiffness in my hip (where I have had a hip replacement and a couple of blasts of radiotherapy) and in my lower back where I know the vertebrae are 'pretty manky' to use the oncologists's technical term - I have had radiotherapy there as well. I have also felt achy all over in a sort of mild flu-like way and when I get up I just want to collapse back into bed. OK, so it's only been three days! What's bothering me is whether this is a side effect that will pass or something more sinister that needs looking into.
Anyone had experience of symptoms like this after a denosumab injection?