Breast Cancer Now Forum

Morning all   Thank yo for your lovely replies. You forget how supportive this forum is. I plan to sit down for an hour this afternoon and read back over the last few weeks to see how everyone's doing.   I just wondered what chemo treatment plans other ladies are on who had a high risk or high intermediate risk Oncotype score? I've decided to go ahead with the private oncologist appointment which will be in 2 weeks time as shes on leave. In the mean time I'm going to get all my paperwork and questions together (I'm going to get my £420 worth ). I'm also going to research what chemo other high scorers are on, so far it seems everyone has a taxane of some sort. I appreicate everyone's different and my oncologist took into account my mild peripheral neuropathy. But I find him very set in his ways ....very black or white...ie you either have 6 FEC or its 3 FEC and 3 Taxane and thats the only option. And as I wasn't suitable for 3 Fec & 3 T then it was 6 FEC. I may be wrong, and I'm hoping I am. But I feel thatover the long run,  the £420 spend on my credit card  will be money well spent if it gives me reasurrance or changes my treatment plan.....although I can think of nicer things to spend it on like a lovely holiday when the chemo and rads are over!!!   Dikat - sorry to hear you're also having problems with being neutropenic and its delaying your chemo. 0.2 seems really low. I hope you're feeling ok. x   Mai7 Thanks - I'll read your blog this afternoon x   Jayne1966 - jus from reading your last post it seems you're going through a lot. I hope you're doing ok. Yes I'll contact the local cancer suport centre as I believe they offer counselling. Thanks x ... View more

Hello all   Long time no see! I haven't been feeling great the last few weeks - more mentally than physically (although fatigue is progressively getting worse but can't complain compared to other far worse side effects that  some of you have suffered).    Even though it happened in December, I've been really struggling with the change in my diagnosis from low to high risk of recurrence. Mainly the fact that they didn't do the oncotype dx straightaway but only after I insisted which meant chemo didnt start to almost week 12 after surgery...which means that as I'm high risk it gave any rogue cancer cells more time to spread via blood stream and get settled in! That coupled with the fact that I'm on 6 x FEC as opposed to 3 FEC & 3 taxane which would be more effective but can't have due to already having peripheral neuropathy. And the 3rd thing that makes it worse is my chemo keeps being delayed due to being neutropenic each time even with 5 x filgrastrim each time (with the knowledge that chemo is given in 3 weekly cycles as its more effective then than the 4 weekly which I'm currently having). I was told my injections may go up from 5 but when I spoke to my oncologist he said no. I told him that others on this forum are having 7 or even 10 injections and he still point blank said no .....without giving any reason!!!     I then had my first appointment with psycho-oncology. At the end of the session the counsellor said my anxiety levels were way to high and that I'd be seen again within a few weeks to help me start coping better. I phoned after 3 weeks of not hearing to be told that I wouldn't be seen again for at least 3 months due to staff shortages. If I'd been told that on the day it would have been better than waiting for an imminent appointment which actually wasn't going to happen!!    I'm due to have FEC 4 on Monday...or it will be the following Monday if I'm neutropenic again. Today I phoned the local Spires hospital as I feel I would like the chance to have a proper detailed talk with a breast cancer specialist oncologist to see whether or not it would be worth risking having 2 or even 1 tax. The cost would be £420 for a 45 minute appointment. Its an awful lot of money but I'm thinking it may be worth it if it can put my mind at rest or even change my treatment plan (the oncologist i would be seeing also works at my NHS hospital and I would then change to her for the remainder of my treatment).   Anyway all that going on in my head coupled with other problems that life doesn't stop throwing at you just because you've got cancer. !!  I've now applied for counselling through my GP and also started working through some CBT self help stuff, which although I was a bit cynical is actually quite good.   I hope everyone's doing ok? I'll try and read back through all the posts and see how everyone's doing. Boy this is a long hard journey isn't it!   Anyhow its nice to be back  xxxxx ... View more

Hi all - reading through everyones posts it shows how many different forms and stages of breast cancer there are...we're all becoming medical experts!! I'm tired again...Made several calls to hospital yesterday and today to try to get to more information re still having low neutrophils even with the daily injections (I found out that theres been no plan to increase injections after chemo 3 ...the chemo nurse I spoke to just said I may have every chemo delayed..lovely). Finally got an appointment with oncologist for Friday...but why does everything have to be a battle!!   Hi Agate - I'm sorry to hear about your brother-in-law and that he now has CIPD. The pain from these conditions is indescribable when its at its worst. I hope his pain improves. But it can be a very long process. I had GBS 14 years ago and have been left with peripheral neuropathy in both legs, tinnitus and fatigue. I agree that it is really difficult when you have a rare illness that even most medical professionals haven't heard of. I had a terrible experience -  from GP's to the  hospital I eventually went to. I was left in a bed for over a week and was getting weaker each day ( I looked like I'd had a really bad stroke). By this stage I could feel my body shutting down and decided that if I made it through the night I was going to discharge myself. As no one was helping me I felt that the only decision I had left that I could take control over was where I would die ...and it wasn't going to be in that horrible ward. The next morning I told the senior nurse I was leaving (quite difficult as I could barely speak with paralysed face!!) and she got in touch with the senior neurologist at the sister hospital who came to see me the same day and took me back with him and I was finally treated. After all of that though I was lucky in that I wasn't ventilated and have made a very good recovery and although the neuropathy can be uncomfortable I'm not in pain.    But its sods law that all these years later GBS has influenced the treatment I can have for breast cancer! Re oncologists - I'm changing to a different one after my chemo 3 next week. Although the whole experience of GBS and the treatment I received left me with a lot of anxieties, it also taught me to fight to get the best...which is why I'm changing oncologists and why I fought for the Oncotype DX test. Without that I would never have known I needed chemo. So maybe the experience I went through does have a plus point too! I hope you are doing ok in your journey? xx ... View more

hi reddi - thank you xx yes thats right about GBS and the neuropathy- you have a good memory!  I know that ultimately they are trying to keep me safe by delaying. Its just getting your head around that when you have the chemo date on your calender and get yourself prepared. I think we're all having ups and downs but I know this will be over soon. I hope you're ok xx ... View more

Hi dikat - yes I keep getting told palpitations down to stress...it made me more stressed   I'm definately changing oncologists after FEC 3 next week. As my current oncologists day on the chemo suite is Monday I have to have bloodtests on the previous thursday. But if I swapped to an oncologist who's day was wednesday I would have blood tests on Monday like you. Thats an extra 48 hours for blood levels to recover. I'll do anything to try and stop it being delayed!! Are you getting used to your wig now? It looks great by the way, very natural. I had mine trimmed but think it needs a bit more off...although maybe I need to wear it for a while to get used to it xx       ... View more

Hi all   Been feeling so low since finding out on Friday that my chemo wasn't going ahead today. Just been through the weekends posts on here and it seems quite a lot of us are feeling down at the moment! Today has been awful - thinking I could be half way through but instead I've another week to wait. I also called and spoke with a nurse on the chemo suite today and she said theres a chance that all of my chemos will be postponed by a week. Which really wasn't what I wanted to hear.  That potentially  takes me into May to finish. Its so cold and I've just been moping around with my dressing gown on over my clothes all day!! I then get annoyed with myself for feeling like this. I know I'll bounce back but each knock back is just that bit harder at the moment.    Dikat - your photos are lovely. It must have felt liberating to post them. I'll do the same once I start wearing my wig. Hair still here but really hurting at the moment so don't think theres long to go...its stressful waiting for it to go but as I still have a fine but ok covering I don't want to shave it until I need to. I know what you mean when other people complain about little things. I find my patience level is really low at the moment. In a way when people complain about everyday problems it makes me feel even more isolated as I feel that I can't always say whats worrying me as its too much for other people to deal with sometimes I think.  Glad you got the go ahead for Wednesday. My neutrophils were 1.5 and white blood count was 2 and they decided not to go ahead. I can't recall....are you having the 5 x daily injections? xx Rapunzel - sorry you're feeling low too. Like you say I think the weather does play a part. I'm sure if I was having chemo in summer I would have been sitting out in the garden reading a book today rather than mopsing round in my dressing gown!! I had a heavy period after first FEC. I did a  lot of research on this and other forums and found that women who still had periods prior to chemo could have a period after their first 3 FEC's so hopefully its nothing to worry about but its a pain when you're already going through so much. xx   Marykamille - I hope today goes well. All of us have to be so brave through all of this process and I think wearing your wig out for the first time takes a lot of courage. I had a trial run and wore mine out when I went for a curry last week. I sat right in a corner and kept asking my ex (who has been my complete rock through all of this) if the wig looked ok...not a very relaxing experience for either of us!! xx   Jayne66 - glad today went ok. Enjoy your curry!! xx   Fluffysunshinepants - side effects wise from injections I had some bone pain around hips and lower back - but not too bad. I also felt more nauseous, had a heightned sense of smell and find that strong smells made me feel sick. I also had what I called 'heavy' palpitatiosn. It felt like my heart was thudding heavily nd slowly rather than the usual quicker palpitations. Hope you're ok xx   Lots of love to everyone on here xxxxxx     ... View more

Hi. I was in a very similar situation timewise. I had surgery (mastectomy and tissue expander) and at my follow up appointment 3 weeks later the plan was just radiotherapy followed by tamoxifen (they said I was low risk of recurrence and had no node involvement but I was concerned as I had 4 tumours even though the largest was only 10mm). Then there was an additional 2 week wait when oncology somehow didn't realise I'd had my follow up appointment with the surgeon - they only knew once I phoned them to find out about delay! When I saw oncologist I actually insisted on the oncotype test which added another 4 week wait whilst sample was sent off to Onccotype labs in USA. Then when I went back for results I was completely shocked as Oncotype had changed my risk of recurrence from low to high (my score was 31). So at that point chemo was recommended. By the time chemo started I was at 11 weeks post surgery. I really panicked as I read a lot of information and ideally chemo should start as soon as possible after surgery. But it is still proven to be effective within 12 weeks.    I do understand how you feel. When starting chemo I felt that I was going to go through this horrible treatment but the effect of it wouldn't be as good as if I'd started sooner. But I've had lots of reasurrances that within 12 weeks is fine and as some women have infections following their surgery they do start later than that. I've had 2 chemos so far. My second was delayed by a week due to low blood count. I then had 5 x filgrastim injections to boost blood count but my third chemo is now postponed (should have been this monday) due to still having low white blood count!! Again this got me fretting but it does happen alot that chemo gets delayed by a week.    The good thing is that Oncotype is one of the most advanced tests for recurrence and there is a chance that it'll come back low and you won't need chemo xxx ... View more

Just had call from hospital....white blood count and neutrophils too low again .....so chemo postponed by a week again   As I had the injections this time around it looks like they may be increased on next cycle....more needles woohoo!! This whole journey is so hard physically and mentally. You try to get yourself psyched up and mentally ready and you also get practical aspects in place ready for chemo on a set date and suddenly its not happening. So disapointed. luckily a friend is coming round shortly and we're finally going out for my birthday lunch - postponed from my birthday as it was the day before chemo started in December!   Good to hear from you Marykamille. Sorry you're still having mouth issues. Sounds like your oncologist is finally being more on the ball now though? xxx ... View more

sorry daffydilly - realised that you do get bad side effects from injections! Its hard to remember everything when replying to this feed as you can only see the actual post your replying to and when you're replying to several posts in one (with chemo brain) it gets confusing!! I hope you're not so bad with injections this time xxx ... View more

hi all   daffydilly - like you my side effects haven't been too bad but I'm absolutely dreading my third FEC on Monday. I also feel like a bit of wimp for being so scared but having chemo is massive and theres a big psychological impact with it as well. We never know how each cycle will effect us, theres the constant worry whether each ache or pain is chemo related and at this time of the year we're all trying to avoid getting the lurgy! For me its made a lot worse by my fear of canullas and I wish now I'd had a PICC line already. On my last chemo I started crying as soon as I reached the hospital grounds and cryed almost all the way through chemo and I have a feeling I'll be the same this time!!   dikat - glad you're feeling better and that the calf pain was nothing serious. It's best to check every ache and pain. I agree that the 'C' word seems to be everywhere at the moment...or was it always but we just didn't notice it before?? There do seem to be an awful lot of cancer related adverts on tv and nearly every book I've read since diagnosis seems to have some character or other with cancer even if its nothing to do with the plot aarghhh!!   drummerswidow - I hope you've been getting some rest and feeling a bit better xxx   I'm hoping to start some complementary therapies through a local cancer charity soon. As usual it seems everyone is told different things about what they can have especially re acupuncture. It would be good if the whole chemotherapy process was standardized across the country. We already go through enough anxiety without finding out that each hospital seems to have different approaches to almost everything!!   Hope everyone has a good weekend xxx ... View more

Hi Drummerswidow, sorry to hear you're feeling down at the moment. Dealing with the diagnosis and then the chemo is bad enough without  reacting so badly to the injections on top of everything else. It must feel like too much. Are yours for 5 days? The good thing is they will be over for this cycle soon but thats not much help when they're making you feel so bad. I read somewhere -  possible on this forum(!) - that there was a version of the injection that you could have for one day only but its more expensive. I wonder if you could push for that based on how ill they're making you feel?? Hope you get a good nights sleep and feel better in the morning xxx   Thanks everyone for feedback re PICC. It sounds like everyones doing well with it. My arm is still hurting along the vein which is stressing me for Monday!  Based on how well everyone's doing with PICC I've decided to have one ready for chemo 4. The thought of walking into chemo suite without having to deal with a canulla makes it feel much less traumatic than the first 2 were. xxx ... View more

hi gocat   Thanks for getting back to me re PICC line. I think I'll have to do it as, after yesterday, I'm already getting stressed about the cannula on Monday!    Re nausea - I had the 5 x daily injections for the first time after my last chemo. I got some slight back pain and I also felt more nauseous than after my first chemo and got a really bad aversion to various smells! Both have stopped now so I'm guessing it could have been down to the injections now you've mentioned it. Hope you start feeling better now injections over xxx ... View more

Hi all   Jayne & drummerswidow - hope you're both doing ok. I think we are all so fragile at the moment and we can quickly go from being positive and optimistic to a complete sobbing wreck in a matter of seconds!  I watched Cold Feet on Monday night (treated myself to a late night by staying up until 10pm rather than the usual 8.30-9pm!!). I ended up sobbing my heart out after Jen got her breast cancer diagnosis! It took me right back to when I got my diagnosis as it was very similar in that I was told on the day I had the ultrasound and cone biopsy taken that it was cancer. I think they're portrayed the shock of it really well but I would have preferred it if they weren't doing the cancer storyline ...I need escapism!!!   I had to call the emergency line yesterday and got told to go straight in. (This was just after I'd arrived home from the other hospital where I'd had a tissue expander fill. I was knackered, aching from the fill and it had just started sleeting outside!!) After the bad time with cannulas on chemo 2 Ive had a pain in my wrist - which I though was just bruising. But its slowly spread up to my elbow and now up to my shoulder. They think its 'tracking'? as in a vein is irritated by the E in FEC. They needed to check in case there were signs of a blood clot  - which thankfully there weren't. We discussed a PICC line again and I think I'll be having one the week after chemo 3 - which is Monday. The only problem is if my veins gets irritated as they start to administer the chemo or if they can't get a cannula in my chemo would be postponed by at least a week again whilst they organise a PICC line. Extra stress again for chemo day - lovely!!   Is everyone doing ok with their PICC lines? I'm scared because whenever a PICC line is mentioned they always include the potential for infection and bloodclots! But I think it may have to be the way forward for me now.   Hope everyone's ok xx ... View more

hi dikat - you must have posted as I was writing! Thats so crap for you. One thing just seems to lead to another sometimes with this process. Re heartburn ...I have previously been prescribed lansoprazole pre chemo for really bad heartburn. I started taking them again this week as I felt it come back and theyve worked well. I checked with GP yesteray and she said I was ok to keep taking them ...so I don't know if they are any different to what you've tried?? Really hope you get some good days beofre next chemo xx ... View more

Hi all   I finally feel like I have some energy returning today woohoo!! If I get away with only fatigue this time I count myself very lucky after reading what some of you are going through.   Dikat - sounds like you're having a really tough time. I hope you're starting to feel better. I know after my first chemo I felt like I didn't have a break from side effects and you really need at least a few days of feeling normal..ish! I start my Filgrastim on day 5 for 5 days. Due to my cowardly nature re needles I have district nurse round to do them. It would have been a pain waiting in but as I was just on sofa sleeping during those days it was ok.    kitkat18 - that must have been so scary to be told to call 999. There does seem to be quite a few of us having problems with palpitations etc. Its strange that this doesn't seem to be acknowledged as a side effect. It seems a lot of us have various  issues that aren't achnowledged as side effects yet have only happened since starting chemo!!   catlady37 - although I still have hair I wouldn't go out without a hat as it looks terrible. Last night I cut my hair into a wonky bob....I might trademark it ..a 'wonky bob' could be the look of 2019!! Like you I'm thinking about when to brave the shave as although I'm only losing strands I'm losing lots of them and the house and me seem to be covered. Plus I keep ending up with hair in my food...gross!!! From reading all the posts about it I think the build up to the shave makes it worse. Let us know how you go if you decide to do it tomorrow x   fluffysunshinepants - sorry it was uncomfortable when you had your first flush, like you say it should hopefully be better when you're not so sore. It does make it sound worth having when you say how quick blood test was...and no doubt how easy it will be for next chemo. My GP prescribed some Emla (I think its called) cream yesterday to numb my hand for next time. So I may give it one more try with canulla. Although I know I'll end up a blubbering wreck again!    Hope everyone's doing well on this dreary Saturday. If I have no more delays my last chemo should be 1st April so I just keep focusing on the fact that by Easter this part of the journey should be behind me...but sometimes Easter does still seem a very long way away!!! xxx ... View more

Thanks for tht article link marykamille. Its crazy to think you're in a situation where you worry because you have hair!! Glad you're back on track after the extraction.   Jayne1966 - so sorry to read you had further bad news. It so much to deal with when you think you've already had the worst news. I hope you're ok? I agree with you all about being told how well you're doing. I get annoyed when I'm told 'I couldn't cope as well as you'...almost as if I'm better suited to dealing with it... I just think 'well you'd bl**dy well have to deal with it'!! I know people don't know what to say for the best sometimes.   Dikat - sorry you've had such bad side effects. I hope you're doing ok. You posted regarding mastectomy/lumpectomy. I had no option but to have mastectomy. I had skin sparing mastectomy with tissue expander. I've only got small boobs anyhow and as they do a fill during the surgery my new superboob wasn't that much smaller than my old original! I have experienced discomfort with the expander, especially after 2nd fill but it does wear off. At this stage I'm happy with the result but there is a way to go and I'm not looking forward to having radiotherapy with the tissue expander but my surgeon does reassure me it 'should' be ok!!   Rapunzel - I had the 5 GCSF injections this time. I didn't feel hot after. But I did have a red face. I wasn't sure if it was from the steroids but it went on for a few days after I'd finished them so may have been the injections.   Fluffysunshinepants - glad to hear your PICC went ok. Due to my extreme aversion to canullas and the bad experience I had with the canulla on my 2nd chemo Im thinking about having one. My hand is still bruised and painful from the canulla and its almost 2 weeks since it was done...so I'm worrying that the 3rd chemo will be even worse. Although I'm also nervous of having a PICC line ....oh the wonderful choices we have to make!!   I'm also experiencing palpitations as several others are- well its like heavy thuds. I saw my GP today and she thinks its stress but she's booked me for a 24hr ECG to be safe.    I already suffer with fatigue from a previous illness so I'm guessing thats why it's hit me badly with chemo. But I'm thinking if it was this bad with the 2nd I don't know what I'll be like with the last few! Also I'm putting on weight as a few of you have mentioned as well. I've been just sleeping and eating though so its expected. xxx ... View more

Hi all   Ive not been on the forum since my 2nd chemo so not up to date with everyone - hoping eveyones doing ok. Going to read back through all the posts I've missed this evening. I'm doing ok. The only side effect I've had is really bad fatigue. I was asleep for most of last week. I started to pick up on Tuesday this week then over did it a bit which knocked me back again! But feeling a lot better now. Although fatigue is hard I do feel lucky compared to other side effects that can happen.   I still have hair! Is this the same for anyone else almost 2 weeks after their 2nd chemo (again I'll read back over whats been going on later as this may have been discussed already). Its thin and has been coming out in strands as opposed to clumps but I could still go out without a wig and just look like i've got crap hair!!. Of course I'm worrying now that it means the chemo isn't working...the things this process makes us worry about! xxx     ... View more

Hi Marykamille - if I recall correctly it was your extraction yesterday??? If so I hope it went well and you're feeling ok xxx ... View more

Hi DiKat   That great news that you're going ahead for wednesday - fingers crossed. Its extra stress and worry when its delayed. And its good news you were able to have a good conversation with your oncologist...and brilliant news that your lump is shrinking.   My chemo went ahead yesterday!! The on call registrar decided to do bloods first due to previous low blood count and as I was still on the stronger antibiotics. That meant an additional 2 hour wait but I didn't mind. Luckily all was ok and went ahead. I had an inexperienced nurse try to put in the cannula. It was awful. She didn't do it right, it was so painful. Due to my complete phobia of canullas I was incredibly upset and asked for the nurse I'd had previously to do it. It still took another 2 attempts though as veins withdraw after first attempt. They agreed that I should potentially have a PICC line due to how distressed I get with Canulla - but then I don't know how I'd feel with something permanently there. I'm maybe going to see how my hand/veins heal this week first. More good news is that I spoke with someone about changing oncologists and it seems very straightforward. We've agreed I'll call later in week to discuss this as with yesterday being my chemo I needed to focus on that.   Love to you all, I hope everyones getting on ok xxx  ... View more

Hi Rapunzel   Well done on being so brave today. Its a big deal. I'm really glad you're feeling happier now that your hairs cut and you've got your wig sorted. I think its a big step psychologically and like you say it gives you some control over this process. If my chemo goes ahead tomorrow I'm thinking of shaving my head on Tuesday or wednesday.   Thanks for the info re the level of care/monitoring your receiving. Like I said before it does seem that most people have someone within oncology to check in with on each chemo cycle. I really feel short changed! As well as asking to change oncologist I'm thinking of contacting the PALS (Ithink thats what its called!!) at my hosptial with my concerns. but its just an added stress when you're trying to get through chemo!   I've also been referrred to the psycho-oncology service and have my first appointment 18th Jan. I think this will help! I was referred by a breast care nurse after surgery when I was first insisting on the Oncotype DX test - which they all said I didn't need. I was told I was 'being silly' for insisting on it  (but in the end it showed I wasn't low risk as I'd been told but high risk..so not so silly after all!!). I have anxieties which go back to when I had Guillain Barre Syndrome. I was really ill before anyone medical would take it seriously and have a distrust of medical profession which has been exascerbated by the current situation!   Let me know how you get on re your chemo change   xxx ... View more