Breast Cancer Now Forum

Hi, sorry to hear you're both suffering from the side effects. I had similar problems on letrozole and ended up having 3 lots of surgery on my hands to correct it - so some things can be fixed. I had carpal tunnel syndrome and both thumbs had trigger thumb. Apparently these are rare side effects but I know how you feel as I had almost lost use of both hands at one point. I have now been tamoxifen about a year and while my hands are fine, the pain in my feet is excruciating first thing in the morning. Since I was 8/8 positive I'm going to persevere but it's an individual choice. I think that if you want to keep with hormone treatment you have to find the least debilitating product. Not easy. Hope you find a solution x ... View more

Sorry to hear of your failed implant Rosie14. I had a similar experience with my expander implants due to radiotherapy leaving me with a poor blood supply. Luckily they could drain the implant and treat me. I was in hospital for 9 days on antibiotics as a big patch of skin had gone black. It took 6 months to fully heal. They would like to replace my implants with silicone ones but are worried that I'll get an infection - like you - and then I'll be unable to have any implants. I've recently had some lipofilling to deal with the lopsided effect and so far it looks good. Could your surgeon offer you that to make the smaller side bigger? It is surgery but it's no where near as invasive as recon. If you want to chat pm me x ... View more

I was on letrozole for 9 months after finishing chemo. I really struggled to get my hair to grow and I had no body hair, eyebrows and sparse lashes ( despite eyebrows and lashes surviving chemo). I changed to tamoxifen due to some debilitating side effects and now have lots of hair! It may be worth speaking to your onc to see if you can change to alternative hormone therapy. I know tamoxifen and letrozole work in different ways but ultimately the reduce hormone levels. Hope you get it sorted soon. ... View more

Hi hazel, I have had ANC on both sides (2003 and 2023). I have mild lymphodema in hand and arm on the most recent side. However, I exercise regularly at the gym and do 'body pump' 2-3 times a week. I find it helps. My lymphodema nurse has echoed the advice about exercise being good to assist drainage but it's a balance in building it up and what your body has done before . ... View more

Hi newey, I had bilat mx and immediate recon with strattice and implant in oct 13. I wasn't expecting to have chemo or rads either but had 3/15 nodes so they threw it all at me. I couldn't have FEC as I had that in 2003 so I had docetaxol and carboplatin but could only manage 4/6 sessions. Had 15 rads. My implants are fine and weren't affected but i know there is a risk. I have been told that if the implants change I won't be able to have them replaced as the rads have given me a poor blood supply to the skin and I suffered a post op infection from rad damage before. I think it's just a lottery if your implants are affected or not. I took letrazole for 6 months but the SEs were intolerable and I've had 3 ops on my hands for the damage it's caused but I think I'm an anomaly! I'm now on tamoxifen and doing ok, just very hot with night sweats. Good luck with your treatment. Xx ... View more

Hi suzidel, I have a Hickman line as I have I had ANC on both sides so they can't risk large volumes of chemo in my veins. I was a gym bunny before all this but have had to stop for now, mainly due to chemo making me so breathless. I only walk now, and that's snail pace! I don't have experience if the PICC line. The one drawback of the Hickman is that it's very visible. Mine has come out mid chest and I have to wear high tops/scarves to disguise it. It has to be kept away from direct water so splashy showers and submerged baths are out. I did see somewhere that you can get covers for swimming but swimming and chemo don't go anyway! I did see one lucky man with his line in his shoulder and that looked less obvious, especially as the removal will leave a mark. I know haven't answered your question but hopefully the shared experience has helped. Pm if you want to know more. Good luck with the rest of your treatment. Mel x ... View more

Petal, I think you're right about the se's kicking in earlier each time. I'm sure the effects are cumulative. Makes you wonder how long it will take it take to get all this out of our systems. Good to hear you're getting that extra blood test on Monday. Think it's so easy to get neutropenic on this regime. The oncologist admitted my dose was too high and reduced it on Wednesday, so fingers crossed for an easier ( if that's possible) weekend. It normally completely floors me on days 3-5, which is apparently a bit early in the treatment. Hope all the angels are doing well. We are getting there ladies xx Mel x ... View more

Sue, I just moisturise round my cuticle when I put on hand cream. You can't paint on greasy nails so best to do it regularly after painting and the days in between. Your skin might get really dry as mine does on the middle week. I get through tonnes of body lotion ( aqueous cream is good and v cheap or if you have kind friends they might treat you) and lip balm! Don't worry you'll be fine, it's just different to fec xx ... View more

Hi h, I'm 44 and a bilateral mastectomy with implants in October. I've not regretted this at all but things haven't really gone to plan for me either. I chose the bilateral as I'd already bc in my other breast 10 years ago. Totally different to the one I had in October. So just because you've had one type of bc doesn't mean you can't have another - and I don't want to scare anyone as it doesn't happen that often. But it can happen. My reasoning for the implants was that the op wasn't as hard as having recon using my own fat. It's not easy to have it all one go. I have a friend who had natural recon, then opted for implants with great results. My surgeon has always said I can have them replaced for natural at a later date if I want. I honestly don't think I could have coped with natural recon at the time of the mastectomy. Good luck with whatever you choose. Melx ... View more

Hi loulou, I had an infection in my lumpectomy ( 10 years ago). They had to reopen the stitch line and I effectively had a hole. They packed it with some seaweed derived material and it healed up slowly from the inside. Recently had a mastectomy and had a similar healing problem. They used the seaweed stuff again with some silver in it. It kept infection at bay ANC helped it heal. It does take a few weeks to heal so there no magic cure. Maybe you could ask your bcn about the seaweed silver stuff. It was really good. Hope it heals quick Mel x ... View more

Petal, I've had lymph nodes removed on both sides. I've only experienced some problems with more recent side but I'm hoping it will settle ( cording and mild lymphodema ). You might need help with heavy stuff in the short term but the latest advice on avoiding lymphodema is that you can move weight as long as you work your way up and go straight in with heavy stuff. I did a lot of gym work with weights up until my recent second occurrence and never had a problem. It's about being sensible and body aware. I mow my own lawn etc but it's been gradual. Take care and I hope the veins improve. I still have a burn from epirubicin leakage more than 10 years ago. Mel x ... View more

Hi Lisa, I was in a similar position to you when I finished chemo 10 years ago. I opted for the very short ( almost action man!) hair. No one has ever mentioned it and I was looking forward to finally ditching it this Easter when it expires. I always found it a reminder of something I'd managed to put to the back of mind ( yes it can be done). Sadly I'm back here again and need to renew my passport. I'm going to wear toy wig this time. Enjoy your well deserved holiday! Mel x ... View more

Petal, hope the antibiotics work soon, I've just finished mine. I was borderline anaemic so I got away without any transfusion this time. It really sounds like we have experienced similar side effects but yours are worse than mine. I don't need any scans as I'm having this post surgery. I had a bilateral mastectomy with implant recon ( they didn't think I'd need chemo but I had 3 +ve nodes). Hope your scan shows a real improvement and that will spur you on through the last 3. #4 on the 19th so I'm a day behind you! Might be worth investigating a line like SJB says. I have a Hickman line and it makes things so much easier for bloods and treatment. Good luck Mel x ... View more

Petal, I've been having similar problems to you. We are both on the same chemo ? Docetaxel and carboplatin). I've just spent 3 nights in hospital with neutropenia too. This was after my third cycle but I think I was probably neutropenic after the first 2 but stubbornly carried on. The thrush is a nightmare but my hospital have put me permanently on a high dose of fluconazole. It really has helped. Hoping they reduce my dose next time. Petal I hope they sort things out for you too, I'm sure with the right dose and some good meds it'll be easier for the last few. Mel x ... View more

Maz, sort to hear you are feeling down about things. It is hard on the first week after treatment. I often have a little cry about it all - feeling unfeminine and out of control. I've had CMF about 10 years ago and compared to epirubicin it's not bad. Your hair might even start to grow back and the se's aren't too bad - it's not as bad on your veins. Although you've got 1 or 2 more sessions than most of us, you're getting good treatment. And all us angels will be here to spur you on. You're doing great 🙂 x Mel x ... View more

Hi, I do them myself. Really easy and not painful, just pinch an inch and off you go. No one showed me, they just gave me a leaflet. A few of us December angels 2013 have them and do them ourselves. Melx ... View more