Breast Cancer Now Forum

Hi everyone,   Sue, I'm also 3 weeks from my last chemo, although mine was Taxol. My hair is growing back - I have some fuzziness going on with a few longer wisps (about 1cm). However, as it is pure white, I still look bald to the unconcerned onlooker. Oddly, the very, very short bits of hair that remained on my head throughout don't appear to be getting any longer at all. My eyebrows and eyelashes are virtually non-existent. I still have hairy arms LOL!   The neuropathy in my fingers seems to be getting a little better (although the tips hurt if I spend too much time on the i-pad 😳 . My toes are a different matter altogether and the soles of my feet are still very sore. I don't feel as fatigued as I did, but I've been pushing myself to get out and do things, and I think this has been beneficial. I went to a cancer welfare day in the hospital on Monday, which was very informative and helpful.   I also attended a professional training course yesterday, which is the first time my brain has been required to perform since early September. After the initial shock and panic (I struggled to keep up with the first few power point slides), I realised that others were struggling with the same concepts as I was, and I really enjoyed it. I'm not ready for work yet, as I can't perform to the required standards for full days, and in any event, I have radiotherapy to get through, but I feel more optimistic about getting back to it in due course.   Thank you to those who have been supportive and have offered suggestions re my black moods. In fact, I am a bit brighter today, partly due to the course. Also, I have an appointment with a hospital counsellor on Monday and another with my surgeon on Friday. Hopefully, more of the puzzle pieces will fall into place.   I'm sorry that some of you have not had adequate support from the BCNs. I have to say that my experience has been much better. I am receiving treatment at a small cancer unit, which is a satellite of a much larger unit. I wonder if size makes the difference? I have found that there is a personal touch in my unit, whereas a friend who is receiving treatment at the larger hospital has said that she has felt it has been a bit impersonal at times.   Gracie x   ... View more

Thank you, Mary. Yes, the lack of control is very unnerving, isn't it. I suspect I'm never going to get sufficient control back, but perhaps that's the very nature of life.   Looks like Iike there is quite a wait for the Moving Forward courses in my area, but I'll have another look.   xx ... View more

Oh dear, I have quite a few repeat words in my last two posts - if if, work work. Am I finally going mad or is there a glitch in the system LOL. ... View more

Hi Jojo, no wasn't eligible as I had had breast cancer before. In any event, I'm satisfied that aspirin is beneficial, so I'm going to be taking a daily baby aspirin.    If if you get on a trial, you are kept under more supervision than otherwise, so it's worth doing, if you are happy with the prospect of getting a placebo.   good luck, whatever you decide.   Gracie xx ... View more

Hi everyone,   I haven't been here for quite a while. My last taxol was a fortnight ago and, although generally I had fared better with Taxol than with EC, I was hit quite hard by the last one. The bone pain lasted about 3 to 4 days as normal, but the fatigue was much worse and lasted longer. Also, I was hit with nausea, which had been a major feature of EC but not Taxol. I didn't feel anywhere near normal until last Thursday. In fact, I still feel quite nauseous.   If you haven't had your vitamin D levels checked, please do so. I asked for mine to be checked and discovered my levels are very low (15, when the recommended level when going through cancer treatment is 70-100). Studies show that low vitamin D levels are associated with higher recurrence and lower survival rates, as well as other issues such as fatigue, depression and bone pain. Low levels will also prevent the absorption of calcium, so you are in for a double whammy if you are going to be taking tamoxifen, Letrozole, etc. Goodness knows how much this has impacted on how I've felt throughout chemo.   I really sympathise with those of you who feel you are flapping about a bit in relation to work. I work part time, and some of it is teaching post-grads on professional courses. I enjoy that work but the days are full on and there is a three hour round trip commute, which means a very early start. I am pretty damn tired after a three day course, even when I'm feeling well.   My other work work is extremely demanding and the sort of work where there is a high expectation of competency and resilience. I was appointed just before my first diagnosis in 2015 and was so excited, as I thought I was past it at 55. After my treatment ended in December 2015, I worked like a demon to get my knowledge base up to scratch and I'll admit that my stress levels were way too high at times. I think I lived on adrenaline for 6 months or so. I was just starting to feel more confident in the role when I had my second diagnosis.   Now, I have no idea what I want. I have worked so hard to get to where I am, it would be madness to give it all up. However, I have TNBC, which has a high recurrence rate, and I believe stress is a factor. If this is going to hit me again, why not give myself time to do all the things on my bucket list? On the other hand, I have three kids (two still at school), who will need financial help for university etc. Also, will I get bored? I'm still only 57.    I am struggling with other sorts of decision making. We have been planning a house extension for many years, which we have been delaying due to the cancer. My husband is leaving it up to me whether we do it or not and I just can't make my mind up. I really want to do it, but it will cost quite a lot of money, which we might need if I have another recurrence or my family will need if the worst happens. I can't even think about booking the family holiday this year. It all seems so unimportant.    I dont really know know how to get past this. I have applied for counselling, but there is a waiting list.   Gracie xx       ... View more

OMG Angie, you really have had the most awful time throughout chemo. You've finished the infusions though now, haven't you? Obviously, you have a way to go to recover from all of this, so all my best wishes to you.   i really don't understand why portacaths aren't standard. I asked for one and my onc immediately agreed, but I had had a full auxiliary clearance on one side and the sentinel node removed on the other, so it was a no-brainer for me. The procedure itself was carried out under local anaesthetic and was remarkably quick. The alternatives cause so much pain for the patient and additional aggravation for everyone. It doesn't make any sense not to make this standard procedure.   The only thing I will say is that not many nurses know how to access the port. There was only one in my infusion suite. When someone else tried, she made a bit of a pigs ear of it and this meant I was slightly anxious on each occasion that the knowledgeable nurse was there to deal with me.    I had had my last Taxol on Wednesday and I'm waiting for the bone pains to kick in today. Overall, I have coped much, much better on Taxol than on EC, which was blooming awful. I have a slight amount of neuropathy in my fingers and a little bit more in my toes (but none on the tip of my tongue, Karen - I've not heard of that before).   I'm also struggling with insomnia, which is very unusual for me. I'm up for a couple of hours or so in the night, then I'm tired during the day. I think my main problem is that I can't get the cancer thing out of my head. The chances of it returning are much higher than I'd like and I'm worrying so much about the need to lose weight and what I should eat etc in order to prevent a recurrence. I don't want to put my family through any more of this. I'm waiting for an appointment with a counsellor, which I hope will help. Getting back to work will help too, but I have to get through rads first.   Anyone else struggling a bit emotionally now that chemo has ended/is coming to an end?   Gracie x ... View more

Sending all the positive vibes I can muster to you, Angie.    And hugs for everyone else, as it seems to be a tough time for us all. I'm having a pretty dire weekend - bone pain, headaches, nausea - but hopefully will be on the up tomorrow.   With regard to the radiotherapy, I thought virtually everyone had it. When I had treatment at the end of 2015 for a very small ER/PR positive / node negative BC, I had radiotherapy. This time, as I'm triple negative with one positive node, I thought I'd have it to the breast and the underarm area, but I'm not having it to the underarm area. My oncologist told me she would only recommend that if there were 4 or more positive nodes.    Gracie xx ... View more

Hi Lindieloo,    I'm not sure I can offer much help, as I had a lumpectomy and auxiliary clearance, but I didn't want to read and run.   I certainly have had pain around the surgery sites at various times during chemotherapy, and my experience has been that chemo seems to attack you at your weakest points. Sometimes, the pain has been quite sharp, but it hasn't been particularly long lasting and you seem to be suffering more than most, from what you have said.    Its sad sad that you haven't received a great deal of reassurance from the hospital staff. Could you ring your breast cancer nurse for some advice and support.   I'm unable to offer any help re the liver issue. Hopefully someone will come along soon with some advice.   Gracie x ... View more

That sound awful, Swampy, I really feel for you. At times like this, you just have to retreat and take care of yourself. On the plus side, it's the last one, so once you get over the next few days, it's upwards and onwards.   On the subject of finding someone to advise re nutrition and supplements etc, I think the Haven can offer some help. I'm after someone who can do blood tests so that I know Vit D levels etc are at the optimum level for me. Ideally, I would like an oncologist who buys into the complementary medicine side. There must be someone like that around. It's finding someone who isn't off with the faries or whose primary aim isn't to extract as much money as possible from you. As soon as someone mentions alkali / acidic duets, I switch off.   Perhaps the GP is the best place to start?   Gracie x    ... View more

Had my 3rd Taxol yesterday. So far, so good, although I'm expecting the bone pains to cut in tomorrow. So far, I haven't had the acid reflux I had with the first two. I also have a very bloodshot eye. What with that, the weight gain, the bald head and disappearing eyelashes and eyebrows, I'm starting to resemble something from a horror film.   I can't believe I've only got one more to go. My last one is on 8th February and the worst of the SEs should be over the following week. I'll then have 20 radiotherapy sessions. I can see 5he finishing line and I am starting to book work from May. My husband is on my case for not taking on too much, but I'm going stir crazy at the moment and I'm desperate to get back to normality.   Is anyone considering supplements once treatment is finished? I'm fairly certain I'll be taking aspirin, vitamin D, and Omega 3, but other things have been suggested and I'm afraid of taking things that clash with one another or are harmful. I'm considering finding an oncologist who also deals with complementary therapies, but it's difficult to sort out who to see. I want someone who will take blood tests, as I feel that's where the answers lie. This us occupying far too much of my (hole filled) brain at the moment.   Gracie x ... View more

I wouldn't feel too worried about the hormone therapy. I was put on Letrozole for my Hormone positive `BC. I was post penopausal but was still having hot flushes. It wasn't great for a couple of months, but then it settled down and I can't say I felt there were any side effects. Certainly, the hot flushes were decreasing gradually and have almost stopped completely now, although that might be due to the chemo.   Obviously, if you are pre-menopausal, then you are going to be pushed through the menopause and possibly some of the symptoms that go with it - hot flushes, stiffer joints, weight gain and a black hole where a brain used to be. That was my experience of menopause anyway, although many women I know had a better time of it. Happily the brain function came back, although I now have black holes again due to the chemo!   I know now that some ladies do suffer, but there are different brands and you shouldn't be afraid to push for the brand that suits you best. I feel fine on Accord.   In any event, its better than the alternative. All the studies show how successful it is in preventing recurrence. In fact, there are suggestions that 10 years is required rather than 5 years, as some women get a recurrence as soon as they have completed 5 years. I'm certainly going to be pushing for 10 years.   I wish there was a tablet to prevent recurrence for TNBC :(.   Gracie xx ... View more

Thank you Aine. My work is a little more complicated in that it is all on a daily fee paid basis, some of it self-employment, some of it employment. It's very well paid when I work, but a big fat zero when I don't. I'm very lucky in that finances are not a major concern (yet). I'm more concerned about confidence disappearing if I leave it too long. But yes, I agree that it's best not to rush things if you are able to control when you go back.   Congratulations, Swampy. I'm so jealous. I think this is a time when the blues might hit you, do take care.   Gracie x ... View more

Congratulations, Aine. One step closer to the end.   I understand everyone's concerns about work. I had just had a big career progression when I was hit by my first diagnosis in August 2015. I was so desperate to hold onto that and get back to work asap after treatment, I don't think I fully grasped the enormity of the diagnosis. I certainly never thought it could come back so quickly. I was just feeling comfortable in my new role when I had my second diagnosis last August. Now, I really don't know what I want any more. I feel stuck in the Doldrums.   My lovely husband, who has been so brilliant throughout everything, seems to think I just need to get back to work and all will be fine. He's seen me bounce back so many times. I'm just not so sure that I'll be able to do it this time.   I'm sure it's totally normal for us to feel this way. Obviously, it's more tricky if reorganisations are going on at work, but cancer is a disability under the Equality Act, so your employers need to watch their step!   Gracie x ... View more

Jo, I certainly do have sore feet, particularly on the soles and in the instep area. I also have slightly numb toes. However, I'm not suffering like you are. Have you tried Aveeno? It is brilliant for dry and cracked skin. I used it throughout radiotherapy last time and my skin stood up very well.   My fingertips look as if they have been soaked in water for hours.   Keep strong - nearly over!   xx ... View more

Hi Karen,   I was also ravenous on EC and had to eat carbs on a frequent basis due to that and also in a mostly pointless attempt to deal with the nausea. My last EC was simply awful and my first Taxol was postponed for a week as a result. I was also grateful for the break, particularly as the break came over the Christmas period.   Interestingly, I have made a new friend through the Look Good Feel Good course who is on the same accelerated procedure and her chemo was delayed at exactly the same stage. I think the cumulative effect of 4 ECs at two week intervals is very punishing (and hopefully bashing those cancer cells to a pulp). Her side effects on the Taxol are similar to mine.   For the two Taxol infusions, I was in the hospital from about 9.30am to 4.45pm on each occasion. On the first occasion, I had to see the oncologist first, as she wanted to check that I was fit enough to go ahead, and then she also ordered more blood tests, which meant a bit of a wait. I also had a heart monitor fitted (as my normal heart rate is very low). Hopefully, you won't have any of that. On my second Infusion, I had to wait about 90 mins before anything happened as they were so busy. Hopefully, you won't have that either!   Before the Infusion, I had a saline drip, which lasted about half an hour and then a further drip of piriton, a steroid, and an anti sickness medication (I think). That has to go through and then there is a wait before you can have the Taxol. The Taxol Infusion takes about three hours. My understanding is that they can't do it any quicker than that as it can cause quite bad side effects including severe shock - although that is very rare, so please don't panic. They will monitor you during the Infusion and for a short while afterwards before letting you go. I think there is another saline drip after the Taxol, but I'm not sure about that. In any event, the Taxol takes quite a lot longer than the EC.   Another plus point is that you only have 5 injections to take home, rather than 7!   Are you triple negative?   Gracie x           ... View more

Hi Ladies,   I haven't posted for a while. I'm sorry that so many of you are having terrible side effects with the T.   I'm on piclataxel (Taxol) for my last 4 sessions and I have 2 more to go. I suffered very badly during my first 4 EC sessions, particularly the last one, when I managed to get a bad cold on top of everything else. I'm doing much better on the Taxol. I spend almost the entire day getting through the Infusion, although the piriton knocks me out for some of that. Then I get a day and a half when I am tired, but not exhausted, before the bone pains kick in. I have three days when the pain is quite hard to deal with, but then I have a week or more of relative normality. I'm not having the awful nausea and taste changes that I had on EC.   Ok, I am rapidly losing my eyelashes and eyebrows, the soles of my feet are sore, there is a bit of numbness in the very tips of my fingers and toes and I have odd niggling bits and bobs, but it is a completely different world to the unmitigating awfulness of EC.    I don't know if anyone else on here is getting Taxol, but just in case anyone is wondering why they aren't getting Taxol instead of T, I think it's down to cost. Taxol is more expensive and I'm fairly sure I'm getting it because I'm on the accelerated procedure and am getting hit every fortnight. It wouldn't be possible to survive that on T. Anyway, in just under 3 weeks, I'll have completed my last 2 sessions. I'm not concerned about the radiotherapy. Ive had it before and the worst part about it for me was having to travel to the hospital every day, which meant I was unable to work. So I have gone from thinking, just before Christmas, that I wouldn't be able to get through the treatment, to feeling much more positive about it all.   The breathlessness some of you are experiencing may be due to low white blood cell counts. When my WBC count crashed before Christmas, I was completely exhausted and struggled to breathe. I have a few days of breathlessness around the half way point of each cycle, which tallies with the WBC dip, although this one hasnt been too bad at all.   The weight gain thing is very odd. During EC, I would put on as much as 5 pounds immediately after the transfusion, and some of that (unfortunately not all), would come off over the next few days. With the Taxol, I have a similar weight gain around the time the bone pain kicks in, and that also comes off over the next few days. I had felt quite desperate about the weight gain, but as I don't feel as nauseous or starving hungry on Taxol, I am able to eat more healthily and I'm starting to lose some of the weight I put on.    For me, the worst part of all this is dealing with the fear of recurrence. I have an extremely aggressive triple negative BC. Most of the reported deaths and recurrence stories in the press etc seem to relate to TN ladies and having had two separate diagnoses (first one being ER/PR positive) in a year makes me particularly anxious. When the chemo was making me feel very ill, I didn't have time to think about the long term implications. Now I'm feeling better, I'm struggling to get it out of my mind. I guess all of this is normal.   anyway, we are all nearing the end of the worst bit. Onwards and upwards. X ... View more

Just a quick post to wish everyone all the best for Christmas.    Jo, so sorry this is happening to you. I hope you are well enough to get home today.   oldDawn - great news about the scan.   Everyone else, I hope the SEs are few and far between for you all.   Gracie xx ... View more

Oh blimey, Angie, you really are being put through it. I was told that people tend to tolerate T better, but you seem to have gone through one lot of horrendous side effects to another. Do you like tonic water? Apparently it's good for bone pains due to the quinine. I have no idea whether that's true or not but I drink loads of it due to the taste and, following my first awful experience of the bone marrow injections, I have managed the pain really well with pain killers and clarityn, but perhaps the tonic water helped.   I saw my oncologist today and my first T, which was due to happen on Wednesday, has been put back a week, as she reckons I'm not well enough to tolerate it, especially as we have no idea how I'm going to react to it. (I'm probably going to be like you, Angie). I thought I would be upset about it but, instead, I'm really relieved. Although, generally, it's all gone very well and my bloods have been really good, it's been relentless as far as nausea is concerned and, more recently, fatigue. Getting a cold/chest infection on top has been utterly miserable. Now, my elderly parents who live away and who haven't seen how ill I can be, will see me at my best when they come to stay for Christmas.   Hmmmmm - chocolate tea? That sounds interesting.   All the best to those of you who are having chemo this week   Gracie xx ... View more

Well I should have persevered in trying yo get a GPS appointment for the cold. Last night, I felt terrible and my temperature went up to over 38, so my husband took me to A&E just before midnight. They were brilliant there, but we were there for three hours. I now have antibiotics, so I'm hoping I feel better before my first T on Wednesday. Ive lost my voice and Ive had 6o how out of a couple of social events today. I'm exhausted and I don't want to be passing the bug on.   I'm beyond fed up that the 4 almost normal days I have each cycle are being wiped out this cycle.   hope everyone else is managing to enjoy their weekend.   gracie xx ... View more

Hi everyone,   Thank you for the support. It looks as if most of us are having similar experiences. Sue F, my experience of EC is very similar to yours. The nausea is relentless, but improves on day 11. It's day 10 today, so I gave my fingers and toes crossed.   Angie I hope your first T went well today and that you feel well in the next few days. You should feel well for Christmas Day, even if a bit tired.   Livvy, you have had chest infections on each FEC? That sounds utterly miserable. You must feel exhausted. I have a nasty chesty cough at the moment and I'm hoping it sorts itself out before my first T next Wednesday. I tried to get an appointment with the GP but couldn't get through on the telephone. I also tried to speak to my medical team, but it was on answerphone. I then decided it would sort itself out. Thinking perhaps that wasn't the best idea now.   Jo and Truey, thanks for letting us know how you are getting on with the T. I hope it continues to be okay for you both. Swampy, those pains sound like the pulsating pains I had on my very first EC due to the injections. I think the key is to build up the pain killers in advance and then keep taking them. The pain is pretty vicious.   Angie, your post made me smile. I cannot imagine being 4 times more tired than I am now. I'm going to be virtually comatosed.   As for alcohol, well I'm partial to a glass of wine or two, but I think my future wellbeing requires me to pretty much give it up or restrict it to celebrations only. I have tried the odd sip and it tastes pretty vile, which is helpful. To be fair, almost all liquid, including water, tastes decidedly off. I'm surviving main;y on bitter lemon and tonic water. I have bought a bottle of baileys for Christmas though.   Wishing you all a good weekend and, for those of us with T infusions next week - all the best.   Gracie xx ... View more