Breast Cancer Now Forum

Hi, everyone sorry to butt in. Saw the post on spots. I had last tax at end of August after a really bad time (hand/foot syndrome, neutropenic - IV antibiotics etc), onc cancelled last planned treatment as said likely to lead to permanent damage. Neutrophils on their slow journey to recovery climbing from 0.0 to now 1.5. Handy having bloods done before herceptin as wouldn't know. I had itchy spots (on face, chest and back) with both FEC and Tax. Eventually diagnosed as folliculitus (spelling?) and responded well to oral antibiotics. It took ages for anyone to really know what it was as I asked everyone on the back of other contact/treatment - GP, A&E doctors, doctors on cancer ward. It came back every cycle and only went when new onc in clinic prescribed antibiotics. None of my chemo buddies had it. Might be completely different type of spots though, but I didn't look very pretty... Alice x ... View more

Hi everyone, I had my last tax at end of August, but have been eyebrow and eyelash free mostly since June from first FEC. Tax finished off my eyelashes, but I've retained a few scant hairs on eyebrows. The LGFB session was really helpful as putting a bit of eyeliner on upper eyelid helps give some sort of definition. I did try some false eyelashes in a department store but asked them to take them off as they looked really, really fake. I found Benefit's browzings really brilliant though for my eyebrows and most people don't even know that I've lost most of them. You get a little kit (comes in a few colours, counter staff will help you find the right colour), with wax and powder and 2 different brushes. It looks really natural. Not sure what it would look like if you have no eyebrow hair at all, but might be worth going to a Benefit counter to see. I have about 1 mm re-growth on my head, but just started arimidex and bit worried about s/e as one of them is hair loss/patchy growth. Oh well, just have to wait and see. Love Alice x ... View more

Hi everyone, don't forget prescriptions are free and your GP can prescribe aqueous cream - big tubs of it! Also rads staff provided tubes and said to ask for more whenever I needed it. Found it handy to keep small tube in my bag in case itchy moment on route somewhere. Day 24/25 for me tomorrow, finish on friday. So relieved it's not been like chemo, and has raced by. Spoke to someone today about the whole feeling fine thing, now I've finished chemo and rads (still have herceptin until July and tamoxifen starting soon). She said to look at it as feeling better (emotionally and physically), but not yet feeling well. Long road, small steps. Love to all. Alice x ... View more

Hi Lisa, that sounds terrible and really frustrating. I'm really not sure this is the same thing, as there are different types of nerve damage. I was taken off docetaxel (last dose end of August) and not given the last planned dose. I had severe hand/foot syndrome and have peripheral nerve damage to my fingers and toes. Apparently it should go in 2 months or longer..., they stopped treatment to avoid permanent damage. I also have a strange nerve feeling (like tin foil on teeth fillings/fingernails on glass) mostly in my legs and feet, and I get this throughout the day. My arm is going through all sorts of funny sensations, but for me I think that it is a combination of the effects from chemo and 3 field rads. One of the doctors that I saw in clinic didn't seem very interested in any of the s/e I reported, but said it is likely to stop soon. Decided to take a bit of control back, as like you feel irritated with ongoing s/e, so went to see a homeopath today. Have been given some homeopathic remedies and it was good to let off some steam with my homeopath - she was much more interested/supportive than the registrar! Sorry, wish I had some answers/practical suggestions. Take care. Alice xxx ... View more

Hi ot2walk, I'm sorry to hear what an awful time you've had, I just want to sympathise really, I don't have loads of advice as I had really similar side effects to you. I was neutropenic on the first 2 doses - 9 days in hospital on IV antibiotics and 5 days for the second dose. I had severe hand/foot syndrome a week after the first dose and it got much worse with the second. Apparently I was told 5% of people can be neutropenic after tax who have used precautionary granocyte. Wish you loads of luck and hope your next one is better with dose reduction, or bearable. Take care Love Alice ... View more

Hi all, music for today's zapping - "I wish I was a punk rocker with flowers in my hair" - I don't know about the punk rocker thing, but looking forward to putting flowers in my hair (1mm growth this week!). I'm half-way through - 12 to go. Not sure what to make of my arm though, has anyone else had any trouble? It feels like just after surgery. I had full clearance and having rads under my arm. Radiotherapist said it was normal, but they would keep an eye on it. Some swelling at the top as well - 1/2 cm, first time I've noticed it. By the way no picture on the ceiling - just a cross carved into the ceiling tiles... Love Alice xxx ... View more

Hi, hope you don't mind me joining in. Have had 10 rads so far (3 field), and skin is starting to go red, itchy and sore right up above what once upon a time was my cleavage. I didn't know that they zapped in the middle and have strayed a bit on my right side. They have given me diprobase cream now instead of acq cream (can't spell it either), and said really common to have sore skin at this stage - great 15 to go, so and going to look and feel really good by the time I finish. How much cream is too much cream? Is it when you put it on, rather than how much is the problem. Love Alice xxx ... View more

Hi everyone, I work in HR. The Disability Discrimination Act (DDA)was amended to include employees with cancer a few years ago. You no longer have to demonstrate that cancer has an effect on your ability to carry out normal day-to-day activities. You are protected against unfair treatment in the workplace, from the moment of diagnosis. The DDA also covers employees who have been diagnosed with cancer in the past, even if they haven't had treatment or symptoms for years. If an employer is a two tick employer (positive about disabled people - you usually see this on job adverts) if you declare that you are disabled and meet minimum criteria on person specification you should be invited to interview. A lot of employers/managers don't realise that cancer is covered by the DDA, but there have been cases where employees have made and won claims. Things like the charter are helpful as they can be really practical. Also "Access to Work" funding can be applied for if you need any adaptations/equipment to do your job http://www.direct.gov.uk/en/DisabledPeople/Employmentsupport/WorkSchemesAndProgrammes/DG_4000347, although to be honest most of the time no equipment is needed just lots of common sense, and willingness to make things work. Love Alice x ... View more

Hi Pineapple, I'm interested to know that the drug companies are supposed to keep data on side effects. I asked at clinic whether they reported side effects in any way and the registrar said no. I will check with the consultant when I see him. My last tax was 6 weeks ago but I wasn't allowed to continue with the final cycle as onc said side effects were in danger of becoming permanent (severe hand/foot syndrome/nerve damage, lost finger prints etc - too early to say whether it has affected hair growth). Registrar said that lost finger prints had not been reported with tax - well it's no wonder if they're not recording and reporting! A colleague of my husband had tax - only 2 cycles and has had very patch re-growth, but she said that her hair had started to thin before chemo. Good luck with everything. Alice x ... View more

Hi all, great post. I was diagnosed in April (so very recent) and had really tough time on chemo, now started rads. Have been seeing a herbalist and nutritionist recently. They've said the same about dairy and soya. Nutritionist said apply 80/20 rule (20% "treats, lapses are ok)so don't beat yourself up about not being "good" all the time. I've got a hand blender which I used for weaning my toddler, from Braun. Great for fruit juicing to make smoothies, and really easy to clean. Recommended high GI breakfast - Apple/pear/banana plus medium oatmeal, flax seed, almond and sunflower and oat milk - not half as bad as it seems and now not skipping meals or feeling hungry. Also recommended to use a lot of tumeric in cooking to help with all the effects of the heat from rads and infections. Mushrooms great for immune system. Have started using oat milk in tea, again not as bad as I thought. Not tried it yet but nutritionist recommended following raw juice especially mid moring: half cucumer, 2 sticks of celery, bunch of watercress, brocolli and apple (every other day beetroot, twice a week add 2 carrots). And Green smoothie - handful of spinach and watercress, 1/2 avocado, 1/2 cucumber, 1/2 cup water, handful of berries. Think adding fruit probably helps. Avocados great for restoring lost oils from treatment. Have a tiny city garden but brother-in-law put in a raised veg bed for me in May, now have a great supply of organic beetroot and tomatoes - not really grown anything like that before so really pleased - every little thing helps. I've definitely done a big rethink on my diet, as I was eating a lot of dairy and soya. Alice x ... View more

Hi just thought I'd add that Aviva paid out quickly (grade 2 invasive bc) after consultant's report received. Had read lots of stories about insurers making it very difficult. Aviva contacted me every 2 weeks to let me know about progress of claim. Pay out has meant we are mortgage free, which is one big thing to not worry about. Alice x ... View more

Hi, my hair started to fall out at the end of first FEC, and then lost most of body hair gradually 2nd to 3rd FEC. Eyelashes went 1st tax, and eyebrows thinned. Someone suggested Benefit browzings and it's fantastic (although a bit expensive), hardly anyone thinks that I've lost most of my eyebrows! Tax stopped early because of side effects (neutropenia and nerve damage) 6 weeks ago, but no sign of hair re-growth yet. Eye watering a massive problem and didn't realise how important nose hair is! But very small price to pay. Love Alice x ... View more

Hi, I had mx and full clearance in April, all nodes were affected. Am starting radiotherapy to chest, above collar bone and under arm on Thursday. My onc said don't normally give radiotherapy to under arm area much these days, reason given was cancer starting to spread out of the lymphs, funny that it has taken 4 months for that information to get to me! I was told 30% chance of getting lymphodema with under arm radiotherapy, and all of this was put on consent form. Tatoo has already caused a bit of swelling so not sure what will happen after 23 zaps. Love Alice ... View more

Hi all and hi Lisa sounds like you've had a terrible time, hope you feel better soon. Start tax and herceptin tomorrow, saw consultant oncologist today. Apparently might not have too many side effects with tax ... so he says, but there is always hope! Skin is all dry and have skin rash coming back apparently all normal, as is being sick a week later - as a delayed reaction to FEC. Have booked workshop for two weeks time, and also Haven in September - not sure if anyone is in or near London (2 other centres as well), but women with BC can have upto 6 hours free treatment/therapies - like yoga, reiki (onc recommended). Good luck and warm wishes love Alice x ... View more

Hi Ginny, I start taxotere and herceptin on Tuesday. I'm having 3 taxotere (I have just finished 3 FEC). Herceptin is via IV drip I think, definitely IV. They will keep you in for about 6 hours after the first herceptin to make sure that you have no side effects - that's what I've been told. After that it is all quite quick, my onc said an hour. Good luck, hope this helps. Best wishes Alice ... View more

Hi, I've not been around for ages, start taxotere on Tuesday after 3 FECs. I had a bit of numbness at night but nothing like you are describing Pauline. Good to catch up on everyone's news. FEC 1 and 2 were really bad for me and was in hospital for both of them with temps and infections. Apparently I'm really sensitive to Epirubicin which kept knocking WBC and giving lots of funny side effects. Delayed FEC 3 for a week even before they got the blood test results because they didn't like the look of me! - make up didn't do the trick. FEC 3 has been much better - apart from first 8 days or so. Start taxotere and herceptin on the same day next week, so keeping my fingers crossed. Sending lots of warm wishes to you all. Alice x ... View more