Breast Cancer Now Forum

Hello all. I've been following this discussion on Letrozole brand as I was prescribed it 5 months ago after switching from Tamoxifen. (Now confirmed post menopausal after surgery, chemotherapy , radiation and two years Tamoxifen) To be honest I was a little sceptical that brand made a difference, however after starting off on Teva brand (cheap I believe) I started with the aching joints nausea and slight flushes. After doing a bit of research I asked my chemist to supply the Sandoz brand of which he had a couple of packets in stock. Managed about three months on that and I found it much easier on the body. The chemist then explained he couldn't obtain Sandoz any more and offered me the Accord brand (told him I definitely didn't want Teva!) Having read this forum people seem to find the Accord brand easier to take but guess what five days into taking this brand I've started with dry eyes, nausea in the morning, aching hips, shoulders and rigid fingers in the morning!! Feeling like I've done three rounds with Mike Tyson!!! So yes it looks like brands DO make a difference. I am going to contact chemist today and ask how I go about sourcing the Sandoz brand again. I've read that Sandoz is the most similar to the original Femara but it is more expensive than Teva,Accord etc.  Wish me luck!!! I can see I've a battle on my hands. 😟    ... View more

Hi again. I remember that stage well and the hair falling out was by far the worse part for me. I decided what was left didn't bare any resemblance to my hair or me.  Once I'd decided to clipper off I found it much easier to get on with treatment and one less thing to worry about. I think FEC is tough on hair. I switched my attention to my diet and eating really well and nourishing my body through all the horrid treatment. That helped me and your hair WILL come back. The thing is to get on with treatment and get better. The hair issue becomes less important. People are kind and will support you through this. Go shopping with a friend and get some nice hats and scarves. I got the wig but hardly wore it. Just wasn't me. Treat yourself to some lovely skin and makeup and hair products. I switched to plant based products and avoided anything with strong chemicals.  Dig in you will come through this. Best wishes. X ... View more

Hi Mishy Just to say I am nearly two years on from Diagnosis now. Stage 3 advanced to nodes. have had a full mastectomy and received high dose FEC and radiation. I used the Paxman system (we live near where the company is based) I managed two cycles of FEC using the cold cap. I found it really tough and after the second cycle my hair came out in huge clumps. as I had masses of hair before it was very noticeable and distressing. At that point I decided to clipper off what was left (with my hairdresser- she was marvellous) and do scarves with funky hats. I was lucky as this was through the winter and I love wearing hats. It was the best thing I did and felt totally liberated. I completed the third cycle of FEC without using the cap. My hair is now fully grown back. Thick and wavy as it used to be and I have it in a shoulder length bob. I use an organic wash in hair dye that is very gentle and have the ends regularly trimmed. It started to grow back straight away so I was never really completely bald. I'm convinced it was the cold capping that helped even though I had a lot of hair loss and only managed two cycles. I'm sure it helped protect the hair folicles and root growth area. So keep persevering and dont worry if you don't manage all cycles with the cold cap. It will have helped. Best wishes xx ... View more

Hi Sue. That's good to hear you are coping with Letrozole so far. And reassuring to hear we won't all just shrivel up on it!! I guess they were avoiding Tamoxifen because of your womb issue and risks of cancers of the womb with T. It's a minefield isn't it! I was fine on Tamoxifen so there may always be an option of switching back to that. I really wish you all the best news for your mammogram and hope they don't keep you waiting too long for the results xx ... View more

Hi sueH-S. that is interesting to read your history. I too was diagnosed with lobular invasive positive nodes and highly oestrogen receptive ER8.  I had mx chemo and rads  2015/16 as the mass was quite advanced. Then put on TMoxifen as hadn't yet been through the menopause. Chemo certainly brought that forward though! just a couple of months ago during routine screening ( they were very thorough) the MRI scan showed a suspicious area of calcification. Biopsies confirmed this as a 2.5cm area of DCIS. Have just had a second mastectomy and thankfully all removed with SNB clear. So good news and no further rads or chemo. Obviously my risk is now greatly reduced as no breast tissue left but my Onc has switched me from Tamoxifen to Letrozole as now menopausal to prevent any distant mastises. I think their thinking was because this area of DCIS was there even though on Tamoxifen.although they are not sure it could have been there before and shrunk and just not shown up on the previous scans. As my first cancer wasn't clear on the mammogram or ultrasound. It's a sneaky thing this lobular cancer! It was only my thorough oncologist who called me up for an MRI  and thankfully found it in time.  I'm feeling very unsure about the Letrozole so it is good to hear everyone's experiences on this forum.  Im hoping my mood will lift soon. Treating myself to some Reiki next week and a trip to London! And looking forward to getting back into my Yoga gently! Xx ... View more

Hi Corrina. I've just started on Letrozole 3 days into it. I'm finding myself a bit emotional and gloomy! Not sure if it's the tablets! I have felt quite positive all through the treatment and now feel a bit down. I guess it's bound to happen at some point! I find the Best thing is to get on with things you enjoy. Hopefully it's just an adjustment period. I'm sure your forgetfulness is something similar. It can be a symptom of menopause.  Lets hope it passes! X ... View more

Hi Sue again! Ive just picked up some of your previous postings (sorry new to this thread) and sounds like you had a very similar experience to me,  I was diagnosed initially with 2-3 cm lobular cancer in right breast which didn't show clearly on mammogram and ultrasound and we all had a shock post surgery to be told the mass amounted to over 10cm! I am quite petite with dense breast tissue so mastectomy was inevitable anyway.  Positive lymph node so chemo and radiotherapy all done. Have just had second mastectomy after VERY thorough screening over the last year and after a couple of false alarms they finally found a small area of DCIS in my left breast after an MRI scan. Mastectomy recommended again because of my size and risk. Nodes all clear phew! So no further treatment. Feels better now it's all gone! So just Letrozole to get on with! Xx ... View more

Hi Sue. Thankyou for your feedback. I've been weighing up the pros and cons and decided as I'm in the 'at high risk group' I need to give it a go! I managed ok on Tamoxifen so fingers crossed! I guess I'm worried with it completely blocking oestrogen I'll suddenly age quickly! Hair thinning dry skin , mood swings etc etc. That's me being vain! However it probably can't be much worse than some of my friends who are going through menopause naturally and having a hard time! i have the DEXA scan next week. I already take vit D and omega 3s and work at keeping to a healthy diet. I am dairy free though so may need the calcium supplements? Though I take calcium in lots of different foods. Day 3 of tablets so I'm committed to it now and like you say may not feel much of a change for a few weeks. let me know how you get on further down the line. How long have you been prescribed the Letrozole for? Ros xx     ... View more

Hi. I am sat looking at my box of Letrozole Teva brand just collected from pharmacist! I have been switched from tamoxifen as now post menopausal ( double mastectomy, course of FEC and rads to right side)  i was then on tamoxifen for 15 months and had very few side effects. No weight gain ( I am careful with my diet) and hot flushes were more like warm moments so not bad at all.  Lost all my hair after chemo ( even with cold capping) but it has grown back thick healthy and curly. Worried about hair loss on letrozole but hoping a good diet will help with side effects. I've been taking vit d supplements and have my bone density scan next week.  Well ive decided I need to try the letrozole so wish me luck!! It would be good to hear from any ladies who have had a positive experience with Letrozole!   ... View more

Hi all. its great to hear news of successes with cold capping but I just wanted to say for all the ladies reading this forum who are finding it hard that it didn't work for me and it's ok to stop whenever you want!! I was on FEC started in October and did 3 doses. I cold capped twice but masses of hair fell out after second FEC which I found very stressful and upsetting. Although I still had quite a bit of hair left over 50% I decided to clipper off as hated the hair falling out everywhere and it didn't look like my hair anymore! Just a word of encouragement I finished the three FEC end November wearing mostly scarves and hats and occasional wig and hair is starting to grow back now. You think it will never come back but it does!! You have to do what is right for you and everyone is different. It just didn't work for me. Good luck everyone xx ... View more

Hi red robin I had lots of brown long curly hair. I did 3x FEC 100 dose. Used paxman cooling system. Had no hair loss after FEC 1 but felt a bit of tingling in scalp but thought this was too good to be true and it was. Cold capped for 2nd FEC and hair started falling out 2 days after. Used gentle organic shampoos minimised combing etc but capping didn't work for me. Came out in handfuls in shower and then decided to clipper off to a no1. I had a wig ready but couldn't match my curly hair so chose one that was different but suited me. Only wear the wig occasionally in evenings going out as prefer scarves and hats in daytime. I really think the cold capping must depend on drug regime you are given. I've been told the epirubicin is the killer for hair follicles. As long as its doing its job elsewhere!!! Good luck with it all. Once you've made the decision and moved forward it does become easier. Rosarty xx ... View more

Hi dotty. I found the cold cap hard too. I used it for my first two doses of FEC. Yep 3 hours plus. No you don't change it during that time I used the Paxman cooling system. Unfortunately it didn't work for me. 😞 ... View more

I was the same. I used really gentle shampoos and products. Did everything to the book. Unfortunately didn't work for me. I found once I knew the outcome and made my decision to cut it all off it was a huge relief. And one less thing to worry about. You'll know what's the best thing to do when the time comes. Fingers crossed for you but I think you will know pretty quickly after the second cycle. I didn't lose any hair after first. I changed my focus to my diet rather than my hair and it has really helped me. I'm loosely following the professor jane plant programme for diet. There's an excellent recipe book and easy to follow advice. Try not to worry too much about hair. It's really hard but a temporary phase. Xx ... View more

Hi baby pink. Yes the wigs aren't the most comfortable of things! But I ordered a bamboo wig liner from Wigs4u which feels really soft against my scalp. Better than the normal nylon things you get. It's alot thicker and breathable. I have a bit of fluff on my scalp so not completely bald and I think my hair is actually growing! You can never be sure what will happen next with this treatment! ... View more

Hi baby pink. Hope you are coming round now from your first chemo.  I was pretty rough for a few days then started to pick up. Then had a dip on my day 9/10 mid cycle then OK in third week.  So far re the hair or lack of I've managed well with scarves tied in nice bows at the bacK with trendy Hats on top. Thank goodness its winter! Wore my wig for first time this sat. But still wore my hat! Felt OK And my husband and daughters liked it. Think it will be kept for hi days and holidays as is very warm and a bit itchy after a few  hours! To be honest when you're bundled Up in coats scarves and hats no one notices hair!  Good luck with second cycle. You'll soon know after that if the cold cap has worked. Fingers crossed. But my advice is get some nice hats and accessories in ready. Scarves earrings etc  xxx ... View more

Hi babypink. The hair falling out in chunks and the bald patches were far more stressful for me than the shave. My approach was it didn't bare any resemblance to my original hair so what was I trying to save! I had to wear hats all the time and cover it up anyway! I just look at it now as the new me. My hairdresser is looking forward to trying out lots of new pixie hairstyles when it starts growing again! Good luck with the cold cap. You have to give it at least two goes before you'll know if it's worth it. Xxx ... View more

Hi. Awil. Well done you finishing chemo!! I'm hoping the docetoxyl will be a bit easier but I'm guessing there will be a whole new boat load of side effects!! Sounds like the hair loss slows down through this. Has yours started growing back now? Xx ... View more

@Rosielea wrote: Unlike most here, I didn't continue with cold cap after 1st round of chemo. (I finished round 6 28/10/15 and haven't gone bald, just thinned a lot. So it does seem to be luck as much as anything.   The fit of the cap is crucial, must be tight all over. The better the contact between the hat and head, the more likely it is to work. Long thick hair will have poorest fit but then will probably still will have plenty even if they do thin. I had a shoulder length bob and fine hair.   I was warned that the coldness could give headaches, make you feel cold etc but I coped fine with that side of things, yes it was cold for the first 15 mins or so but I just found it made thewhole experience much worse. The tightness of the cap and the chin strap just made me so clostorphobic/paniky that I think I just felt very moment of that 3 hour session and I vowed if I lost any hair after round 1 I wouldn't bother with cold cap on round 2. Day 17 I started losing lots, needles to say I didn't have it round 2.   How much more I have lost has varied with each cycle, round 2 I lost lots and that's when I cut my hair short, then clippered it to a no1. Round 4 I didn't have a sore head at all so guess I didn't lose much that round. In fact I think it was round 1-3 where I lost most but I have not gone bald yet!    As as for eyebrows, they seem to be the last to go, I have v.short stubby ones with nothing at the out edges and eyelashes have been done since about round 3/4. This is v.annoying as bits get in your eyes all the time. Had lovely smooth legs for a while, been growing again for a while now. Facial hair lessened but didn't go. Lady garden went gradually, but not completely.  Good luck whichever way you decide to go.   I'm on 3x FEC and 3x Docetoxyl programme. Had my second FEC last Tuesday. Think I'm on quite high dose epirubicin at 100mg I cold capped (paxman system) for these first two doses  Found capping Very hard. Headache all way through 3 hrs and felt nauseous as soon as it went on!  Had my long wavy hair cut to a Bob before. Nothing happened after first cycle And kept all my hair. Persevered with capping for second cycle with help from a sedative the night before!  Rinsed hair gently under Shower second day after cycle and it came out in clumps. Persevered thinking this was just a shedding but hair falling out continuously over next few days leaving bald patches. . By day 5 after second cycle I was so distressed with this I decided to shave off completely. Was a huge relief to be honest and far less distressing than the hair just falling out everywhere.  My husband and children said I had a lovely shaped head and actually said I looked good!!  I am relieved not to have to cold cap again but was glad I gave it a go. I'm sure its success has a lot to do with drugs and doseage you are on.  My advice still would be to give it a go. I guess there's a 50/50 chance of it working. We are all different and it seems some find it a lot easier than others. Its been really helpful reading peoples honest experiences on this forum.   ... View more

  I'm on 3x FEC and 3x Docetoxyl programme. Had my second FEC last Tuesday. Think I'm on quite high dose epirubicin at 100mg I cold capped (paxman system) for these first two doses  Found capping Very hard. Headache all way through 3 hrs and felt nauseous as soon as it went on!  Had my long wavy hair cut to a Bob before. Nothing happened after first cycle And kept all my hair. Persevered with capping for second cycle with help from a sedative the night before!  Rinsed hair gently under Shower second day after cycle and it came out in clumps. Persevered thinking this was just a shedding but hair falling out continuously over next few days leaving bald patches. . By day 5 after second cycle I was so distressed with this I decided to shave off completely. Was a huge relief to be honest and far less distressing than the hair just falling out everywhere.  My husband and children said I had a lovely shaped head and actually said I looked good!!  I am relieved not to have to cold cap again but was glad I gave it a go. I'm sure its success has a lot to do with drugs and doseage you are on.  My advice still would be to give it a go. I guess there's a 50/50 chance of it working. We are all different and it seems some find it a lot easier than others. Its been really helpful reading peoples honest experiences on this forum.   ... View more