Breast Cancer Now Forum

Hi all, I know it has been a long time and for that I am sorry. I have had a bit of a bad time (who hasn't!!) recently. A few weeks ago I had my first Zometa bone treatment. I had such a bad reaction that I ended up in hospital being pumped full of fluids. It was the first time since this had all started again that I felt so ill. Although I was taken into hospital on the Friday I was so ill on the Monday that I could not even turn over in bed to call for help. Anyway all is well now thank goodness. My onc wants to try me on another biphosphorate but I am extremely nervous in case I have the same reaction. Anyway tomorrow I restart my Capecitabine chemo cycle six. The dose has been well reduced as I did experience so many horrible side effects so hopefully they will be minimised this time. Anyway a girl can hope. Again my apologies for the delay in writing this thread. I know it is so important that we stick together and give support. I certainly appreciate everything I have got from this thread. Hope everyone is doing ok and I send my best to you all. Love Margaret xx ... View more

Hi all Well it has been a long time hasn't it. First Tina delighted with your news. I too had some good news and some not so good news. My good news is that the lymph nodes in my shoulders have shrunk so it seems that my chemo is also working. However the not so good news is that it had now spread to my bones. I have been having radiotherapy for the last three days and am having some more on Monday and Tuesday to try and relieve the back pain. I am hoping this will work. It is however really wiping me out and today when I saw my Oncologist he gave me a blood test to see whether I am anaemic and also whether the bladder problems I have been having are clearing up. My last scan also showed a tumour on one of my ovaries so I am having an ultra sound on the pelvic region. I am also starting Zometa (a bone bisphosorate) in a couple of weeks time. Does anyone know anything about this. Would appreciate any lowdown on this drug. My next rounds of chemo will start approximately two weeks later. At the moment I feel it is never ending albeit the good news of the shrinking nodes in my shoulder. Anyway hope everything is managing well and that you all enjoy your weekend. Love Margaret xx ... View more

Hi lemongrove - very interested to read your comments. I am in fact under an Oncologist at Mount Vernon Hospital and often see him there. It was he would told me who they are treating with Cyberknife because I especially asked him about me. I like you think it is better to treat this disease while the tumors are small but unless mine are too big to treat he did not think this treatment was appropriate for me. I am very mindful of this treatment and will continue to ask my Onc about it from time to time. At the moment he thinks it is more appropriate for me to have radiotherapy, bone strengthening treatment and more chemo. Thanks anyway for thinking of me. Love Margaret ... View more

Hi all Tina I'm keeping my fingers crossed for you. Good luck at The Royal Marsden. A wonderful hospital. I believe it is the cancer centre of the country. Saw my onc today. I am going to have some radiotherapy in a couple of weeks both on my neck lymph nodes and back as pallative treatment. I am also starting next rounds of capecitabine at the beginning of April as well as a Bisphosphoates (zoledronic acid - zometa) Has anyone had this treatment which apparently is given in infusion form once every three weeks? It further looks as though the cancer has spread to one of my ovaries. I could kick myself as I had a hysterectomy 25 years ago and I did not want my ovaries removed as they were healthy at the time. If only I had not been so stupid I would not have had this complication now. Anyway on the positive side, my scans otherwise showed my disease was stable. My Onc has said I can have another 4/6 week break once I have had another four or five cycles. At least this gives me something to look forward to. Anyway hope everyone is keeping their pecker up. Love Margaret xxx ... View more

Hi Just read recent threads. About Cyberknife. At the moment it is only being offered privately (disgraceful really). Also my onc tells me mainly for brain and lung secondaries. Apparently not suitable at present time for any other secondaries. However, they are making strides all the time. I am lucky that the hospital I attend is one of the few hospitals in the country to have one. I am seeing my Onc on Tuesday and will ask him about metformin. My sister and friend takes this drug but they are both diabetics. I will certainly look at the thread you are talking about. Thanks for the info. Thanks also for all the recipes - I am a great soup maker as it is nourishing and when your appetite goes you know at least you are getting something good inside you. I make butternut squash and sweet potato, tomato and good old fashioned vegetable which I do not liquidise as I like eating the veg in pieces. I grate cheese on top of this. Delicious especially when you don't really feel like eating. I recommend plenty of chocolate to follow!!! Diet certainly gone for a burton!. Keep smiling. Love Margaret xxx ... View more

Hi to everyone old and new. First I am so sorry that I have been absent from this thread for what seems like ages. I have been going through a bad patch (when is there a good patch with this illness - I hear you say!). Anyway I have just got results of latest scans and mri. Not very good news. Now spread to hips and spine. Am not dealing with this so well. I have however just started taking ante depressants which I had been putting off. Decided that I feel so yucky might as well try these to see if they make a difference. Have been experiencing a lot of pain and finding it difficult to get around. Am on a break of treatment at the present time but will have to start again in a few weeks time. I am desperate to get some quality of life back during this break but frankly have very little energy. Thankfully most of the family and friends are now feeling better after the awful last couple of months and are eager to give their support. Am still going to counsellor and have also enlisted the help of another organisation called Chai Cancer Care. Hate, hate, having to rely on others. Have always been so self reliant. Sorry for banging on for so long. I know one way and another you are all in the same boat. I do wish you all well. Love Margaret xx ... View more

Hi all Tina - hope your scans go well tomorrow and that you are able to get a preliminary report on them at least. Do keep us all posted. Josephine - welcome to the friendliest club in town (well thats what I have found anyway). You are really going through it at the moment - please don't worry about your anxious mood - we all feel this at sometime or other. Remember the purpose of this thread is to give support and encouragement to each other because who knows better what you are going through!! I have had a bad few days and had to stop my treatment on Sunday and Monday. Apparently if the side effects of Capecitabine are too severe if means the body is absorbing more than is needed and the treatment can be stopped for a time to let the body adjust. This in no way depletes the effacy of the treatment or so I am told. Anyway I am now back on it and have another five days to go to complete this cycle. Then only two more (I hope) before I can have some respite. This will of course be subject to the results of the next ct scan. I just wish I had some energy this for me has been the worst and the lack of energy is making me feel very low indeed. I cannot make any arrangements as I know I will end up having to cancel them. This disease really does suck!!! Anyway I hope everyone who I have not mentioned by name is doing ok. Love Margaret xx ... View more

Hi - first of all happy new year to all. My good news that my brain mri turned out fine = I knew it would be. Scaryfox - hope your cold goes soon. I live with a permanent cough every winter and yes it does make your chest sore - i think the persistent coughing pulls muscles. I also know what you mean about lack of energy - I try everyday to do something but most days just showering, getting dressed and making my bed (only a duvet) is enough. My life has completely gone on hold for some time now and that makes me feel very depressed. Tina - hope your flight home was not too strenuous and that your aches subside soon. How did your Onc appointment go. Well I hope. Sarah - yes Capecitabine is Xeloda. I will say no more unless you want to know how it has affected me. Do try and keep up with the arm exercises as this can be very beneficial in the long run. I too want to lose weight. Prior to my rediagnoses last August I had lost nearly four stone through Slimming World. Since then however I have been comfort eating sweets chocs cakes and the like and I am ashamed to say that I have put back at least two stone. Such a shame as I was looking and feeling much better. Now I feel like sh.. again!! Everyone tells me not to worry about the weight gain but it was so difficult to take off. I am hoping that once I have done my six cycles and I can have a break I will be able to get my brain once again round dieting. Time will tell. Anyway enough of my depression (sorry if it has rubbed off on anyone - not intended - but I do find this forum very good to vent how I feel. Love Margaret xx ... View more

Hi all, Kelly - I have been getting DLA since I was first diagnosed five years ago. In my area there is a Disability Advice Centre who helped with the forms which are mammouth. Suggest you definitely do not try to complete yourself. If you do not have an advice centre near you go to CAB or if your McMillan Nurse is happy to help avail yourself. I am on high mobility which also entitles me to get a car and medium care. I am sure I could ask for this element to be increased but frankly at the moment I can manage quite well. As to the Mobility part if you get high allowance (which I am sure you will) and you are under 65 then you would be entitled to a Motability Vehicle. You do not necessarily have to be a driver yourself so your other half could drive the vehicle. With the car comes free insurance, tax disc breakdown and new tyres battery etc. Look on the Motability Site it will give you all the info you need. You will also automatically get a blue badge which in itself is extremely useful. It also entitles you to other benefits which may be of help and use to you. Hope this helps. As to your new lumps how scary is that. Lets hope the investigations you have prove not to be as bad as you think. I am going through this myself at the moment as I am due to have my brain mri tomorrow and see my Onc Tueday for result. Went to hospital to collect my next cycle of drugs but as I am on the cusp of another infection was given an antibiotic instead and told to hold fire with cycle 4 until Monday but if I feel rotten to call hospital immediately. There is just so much ill health all around at the moment with the flu coughs and colds that probably the best place is to go to a desert island by oneself!! Apparently with the chemo that I am on my Onc says some people stay on it for years. Horror, Horror. Anyway I am hoping to have my next ct scan after the next three cycles making six cycles all in. I am also hopeful that if my lumps have not grown I can come off all treatment for a couple of months and perhaps get away on holiday. Time will tell. Hope everyone else is doing ok and I wish you all a good new years eve. I have been told I must live in the now! Love Margaret xx ... View more

Hi all - nearly 3 am and I am having one of my many sleepless nights. I should be feeling a little more settled. Saw Onc on Friday after my scan and he said everything stable. Suggested a brain mri to rule out any tumour as my eyesight has taken a nose dive through a cataract ripening much quicker than it should. Anyway I am sure there is nothing medically wrong with my brain - don't know about psychologically though!!! Am also having my meds reduced to 1500 mg twice a day. Onc thinks this will help with my side effects. Time will tell. I am starting cycle 4 on Thursday all being well and I am to have another CT scan after 6 - 8 cycles all together. Onc says if I am still stable at that point I can come off all chemo and have a further CT scan after two or three months. Keeping my fingers crossed for that. Christmas was great spent time with the family who came over from Holland and down from Chester. The thing that marred it however was that my sister had quite a serious accident and fell down her stairs at home. Lucky for her she has a couple of cracked ribs and a huge bump on her head but it did spoil things a bit. However she is bed bound and is in considerable pain. Anyway enough of me. Tina I am so sorry to read about the trouble you are having in Canada - this should have been your time and for your family to behave like that is outrageous. I can well believe you feel like coming home early. Perhaps you and your husband can go off for a couple of days by yourselves and try and forget everything else. It is really difficult waiting for scans and more particularly results. I will keep my fingers crossed for you. Anyway do try and enjoy the rest of your trip. Hope everyone else had a great Christmas without too much worry!! Lets hope 2011 is good to us all. Love Margaret xx ... View more

Hi all Have felt very guilty about letting thread lapse but have not been great. I have now just finished the third cycle of my capecitabine and am having my first scan tomorrow. Seeing Onc on Friday am to get result (am really nervous about it). I have been seeing Counsellor is has been great but when I leave her I feel like sh.. If mood does not improve after Christmas will definitely start on the a.d. The weather has not helped either as it has been too bad to go out and everyone around me seems to have had this dreaded virus. They have been too scared to visit and quite frankly I did not want them around with the chance that I could pick something up. Therefore have felt extremely isolated. Even my specialist subject - the tv has not helped a lot. Anyway it looks as though family will be here for Christmas - brother and family coming to London from Chester and niece and family coming from Holland. I just hope the extreme exhaustion abates for a while. Tina - I was so glad to read that your skin condition has improved and I will keep my fingers crossed that you have an incredible trip to Canada. Lets hope weather does not curtail your flight!! Keep us posted if you have the time and inclination and tell us about all the wonderful sights and people you meet. Claire - hope the Carboplatin and Gemcitabine does the trick. These treatments are really trial and error. However the alternative does not bear thinking about. We just have to give everything out there a try. Lets hope your lumps are not getting bigger. The trouble is your imagination can just go mad = I know mine does. Scaryfox so sorry to learn that you have been in so much pain = I really hope this improve very quickly and that you and everyone is able to enjoy Christmas. Keep warm and well everyone and I hope the coming season brings you all everything you wish for and deserve. Love Margaret xx ... View more

Hi all I hope the fact that there have been no threads for a few days means everyone is feeling brill and enjoying themselves! For my part I am still feeling a little low although I am on the my rest week at the moment. Cycle 3 starts Wednesday yippee ... I did get some a.d. and they are at the present in my cupboard - I am being a bit of a woose about taking them. I decided to see how I go when I start my next cycle. If my mood diary is still around 3/4 then I will give them a go. Although I have been exhausted I have felt like a rat in a trap recently not being able to get out. Thank goodness where I live we have seen the last of the snow for the time being at least. It vanished finally on Saturday and I went to my library and supermarket - well it was an outing!!! Spent all night Saturday up (couldn't sleep) felt like a zombie on Sunday - got into bed at 10 pm on Sunday slept soundly for one and half hours and that was it. Hence the reason I am writing this thread. Anyway enough about me - I do hope you all have had a warm and nice weekend and that the coming week is kind to you. Love Margaret xx ... View more

Hi all, Sandra - I was so upset to read your thread. How unfortunate not to have an Onc who is sympathetic to you and your needs. Surely it is not too late to ask for a second opinion. Could you perhaps speak to your GP who appears to be on your side. Anyway at least good news about the lumps. The fact that they stayed the same is the next best thing to them strinking. Hope your CT gives you some answers - do keep us posted - I am sure I speak for everyone in saying we are all here for you. As for me I have now finished cycle 2. I am on capecitabine tablets twice a day for 14 days and then 7 days of rest. I am not feeling great however as I am extremely tired and suffering a lot of nausea as well as insomnia. In fact last night at 5.00 am had to get out of bed for the upteenth time to take anti emetics. My mood is around the 5 mark but I am having counselling so I do at least have someone to talk my issues through with. I am hoping to have my scan after cycle 3 - am seeing Onc later in the month and will have a word with him. My cancer at the present time is in the lymph nodes on both sides of my neck under shoulder blade but I am having pain going up one side of my neck. My joints are also giving me a lot of gip. My liver is also looking suspicious so at the moment I feel I have a lot of anxiety - I am sure this is preventing me sleeping. Anyway I am going to have a nice shower (disgraceful that I am not even up yet at 1.30 pm ) unfortunately baths are out as I find it difficult getting out. What a sh....y disease this is! Hope everyone is well and keeping warm. Love Margaret xx ... View more

Hi all Tina - hope you enjoyed your night on the town in Manchester!! Rivka - Brilliant news on the scan results - is there anything they can do for your breathlessness. In this day and age I would have thought they would be able to alleviate any s.e. Poppet - hope you enjoy your reflexology. It is my favourite complimentary therapy - had six sessions first time round and am due to start this time round just as soon as I can muster up some energy. Kelly - Hope you enjoyed watching the switching on the lights. However, your upcoming weekend is making me feel exhausted just reading about it. I did a Dickens evening many years ago and thoroughly enjoyed it. So sorry to read about your Mum - it must be extremely difficult for you with everything else going on in your life. Sandra - thanks for the advice about the A.D. Have been considering this for a while now. Again I went on them for a short time when initially diagnosed but at that time knew I would be able to come off them once I was over my treatment and had been cured!!! This time round is of course different and I am a little scared about getting hooked. I am going to speak to my Chemo nurse tomorrow and if she thinks it would be a good idea I will arrange to see my GP. My Counsellor has advised me to start a "mood diary". One feeling very low and ten great. I have another two and half days to the end of this cycle of treatment and so far my mood diary has ranged between 3 and 5. I really do hope things improve as this is making me feel very depressed and that is not from the side effects which have not been too bad. The exhaustion is another thing however. The other night I was awake all night long and without sleep it is so difficult to cope. Anyway enough of me. Hope everyone has a good week. Love Margaret xx ... View more

Hi everyone Rivka - good luck with your results today - do keep us posted Kelly - thanks for the info on the red cell count - that would certainly explain a lot. I know the worse part is the horrible waiting game. I suppose we have to hang on to that well known platitude "no news is good news". I can't believe I am now coming out with platitudes. Tina - good for you booking the Canadian holiday. One place I have always wanted to visit. Please let us know how you get on. Try Bromley Insurance for a quote. Their phone number is 01282 416050. I remember reading on one of the thread that they gave someone a competitive quote. I am still feeling very low and am considering getting some anti depressants from my GP. I am however somewhat loathe to start on them. Very interesting what you said about the rads on the lymph nodes of the neck. I have both sides of my neck affected. I thought you could only had rads on one side. Anyway hope everyone has a peaceful and happy weekend. Love Margaret xx ... View more

Hi all Feeling a bit sorry for myself at the moment. I am completely wiped out with exhaustion. Sandra I know how you feel with the shopping. I also did some early christmas food shopping yesterday - too much really I should have known better. I managed to get the shopping in the car but getting it up the stairs (I live in a first floor flat) was another thing. I came in and sat down and cried with tiredness. I am also going through a spate of depression which is really unlike me. I am now into the second week only five and half more days to go. I am also starting to get quite anxious as to my first scan after some treatment. I am sure this is quite normal but it is really hard to cope with. I think I had better stop now otherwise you will all start crying. Anyway hope all is well with everyone. Margaret xx ... View more

Hi all Scareyfox - what a time you have had recently. I do hope your infections clear up soon. I have now developed a mouth ulcer. I am being very careful with what I eat and rinsing out frequently. I am also getting quite a lot of nausea although not actually being sick (this chemo is not meant to do that) and this morning I noticed a fair bit of my hair round the plughole of the shower (this chemo is not meant to do this either!!!) It seems to have its own idea of what se will be. Anyway Friday my brother came down to see me from Chester (I live in London). This is quite a big deal for him as he has ms (what a family eh) It was great seeing him and having some quality time together. Although different diseases we are in a similar boat and therefore can understand what the other is going through. Anyway hope everyone who I have not mentioned is doing ok and enjoying their weekend. Margaret xx ... View more

Hi all Great news started second cycle on Wednesday - still have cough but told Onc that if we wait till it goes it will be sometime next summer. He thought that was funny!!! Was very keen to resume as soon as possible. However, I have been just wiped out with tiredness and can confirm that my specialist subject on Mastermind will definitely be the tv. Sandra like me you seem to have a good GP. Frankly they are worth their weight in gold - not everyone is as lucky. Tina - sorry about your Sh'tty week but remember that is now behind you. Do know how you are feeling with the exhaustion though. Hope everyone else is coping ok and that you are able to have as good a weekend as you would hope. Love Margaret xx ... View more

Hi all Thanks for your continued support. My cough is still there but I feel it is getting better so I am sure I will be able to resume my treatment this coming week. Diane - great news Sadie - welcome to the friendliest club in town. Good luck with your op - I have heard of this before and I believe it is very successful. I will keep my fingers crossed that your good news continues. I do agree with Kelly however about counselling. I have had two sessions and I am releasing a lot of my pent up emotions. In the long run I think it will be extremely helpful. Kelly - one step at a time. Great that you can see your treatment coming to an end - try not to think past that marvellous news. Rivka - what can I say. I was so upset to read your posting my heart goes out to you. I too suffer from not sleeping and I often look at this site in the middle of the night. There are so many positive (and I hate that word) postings that hopefully you will get comfort from them. Have you thought about writing a diary about your emotions? I know there will be a lot of days when you are feeling good and on the days you don't you can look back. I found this very useful first time around. In the meantime try to keep your pecker up. Love to all and sorry if I have missed out anyone. Margaret xx ... View more

Hi all. Hope you are all doing well. Tina pleased your tummy bug has cleared up and that the boosters work. Scaryfox good luck today. Be thinking of you. Don't worry about your hair when it comes back I found mine was the best it can be. Claire hope your s.e. soon settle. I think these are worse that this awful disease. Unfortunately I still have my hacking cough - my chest and throat infection have cleared up - however my onc has delayed cycle 2 for yet another week. I am keeping my fingers crossed that I can resume next week. The problem is that if it keeps getting postponed it will mean that I will be in the middle of a cycle all over Christmas. My family are coming from far and wide and as guest of honour I want to be able to enjoy my time with them. Incidentally I tried to post last night but after I had typed my thread the site collapsed. Don't know what happened. Anyway hope everyone who I haven't mentioned are doing ok. Margaret xx ... View more