I completely agree with lucylump and silverpixie, it's really helped me to be able to read your stories and start the journey together.
Wish you all a merry christmas and better 2020 xx
Hi Lucylump and all you lovely July ladies,
Happy Christmas to you too and I echo Lucy’s sentiments, when I say that having you there, has made such a difference to this journey, that none of us wanted to be on . It’s been so often reassuring , and sometimes humorous 😂 to have you there at the end of a keyboard !
let’s hope that next year is better for us!
love and hugs
Hi Lovely Ladies, just wanted to wish you all a Happy Christmastime. Christmas seemed such a long way away when we all started this. Thank you all for being there too. It has made the world of difference having you all with me on this journey. Sending love and hugs to you all. Xx
Nothing happening with my hair too.
I have had my 1st cycle of Herceptin and pertuzumah, no side effects yet.
Oh Flower your 7 year old little boy is such a star and all the children you support must love you to bits too. My hair sounds a bit like yours Silverpixie. No eye lashes or eyebrows yet but a soft partial covering of downy hair seems to be appearing - mainly white so probably looks worse than it is. Thank you everyone for all your support over all these months. It has been great having you all there. Lots of Love. Xx
My hair is starting to come back , like a soft covering ! But no eyelashes or eyebrows yet! I miss my eyelashes because I wear specs and they were the one thing I relied on to perk me up 😂
It’s still grey though and a wee bit crinkly 😂 my OH was hoping for a redhead! Ha!
Yes, we have done well these last six months and especially your little boy Flower79 .. bless him .
Don't think we would’ve got through without our family and friends support and this wonderful forum of course !
Don’t be discouraged, it can get better overnight. At least this is how it was with me. I started to have some hair towards my last ‘tough’ chemo, and then it just started to go all of a sudden and went from a patchy one to a full head of hair in 2-3 weeks. It slowed down again for 2 weeks and the past week it was growing again. How about your eyebrows and eyelashes? I was so excited to see my eyelashes coming back. They are still only half of the length compared to how they were before but slowly getting there. My hair came back much darker and I have some grey hair now. Actually I am thinking of leaving it short for a while. I always loved short hair but was too scared to cut it THAT short. I have straight hair and I was excited for the chance of having a curly one for a while but it didn’t happen.
I do learning support from pre-K to G3, and all of my students loved/loves to pet my head as it fulfills their sensory needs.
I am having a same as you, Herceptin+Perjeta for another 12cycles. I have done two and my third one is due on Thursday. I am also having radiation, I have 4 more weeks to go. Had 33 lymph nodes removed but only two of them had cancer, one on each side. ( I had bilateral BC.)
I was so relieved that the side effects for the last two times were mild to none. The only uncomfortable thing that I have is the join pain here and there but it completely bearable.
So happy to hear that both of your and Louise’s seromas are getting smaller.
I have just looked back where we were in July, it seems like a lifetime ago. We should all be very proud of ourselves and grateful for all of the people who helped us on our journey and fought with us. I certainly am. And maybe the most proud of my 7 year old boy. He handled these last 6months like a champ.
Have a wonderful Christmas everyone!!!
Hi Bod, I am pretty sure my seroma is shrinking too. It is getting softer and a bit more comfortable at night. It is good you have started the herceptin and perjeta. I have had no side effects from the herceptin alone. My daughter really wants to go to Stirling. It's really beautiful there and a safe place so that is good with me . Xx
We all seem to have slightly different treatment but I’m sure they know what they are doing. I had my first of 12 post op treatments today. Much better than docetaxol.
My seroma is starting to shrink but still quite huge. Seeing Physiotherapist on Tues for help with cording. How are you getting on.
Has your daughter decided on her preferred uni. She’s done really well. You must be so proud
Take care all x
Hi Bod, I am having Herceptin but not Perjeta. I am a bit confused as to why I am not getting Perjeta but my oncologist said there wasn't any evidence to suggest it would help me. From everything I have read though it looks like Perjeta is really great. My oncologist did though mention a new drug coming out in March 2020. All I can remember though is that it begins with C. Really wish I knew what it was! Great you don't need radiotherapy Bod. Xx
Hi Lucy good luck with the radiotherapy and anyone else who is having it.
I was told yesterday that I don’t need radiotherapy. I’ve had 29 nodes removed and a full mastectomy. I am having 12 more sessions of Herceptin and Perjeta.
Anyone else having similar?
Good luck to everyone used almost finished active treatment.
Hi Silver Pixie, I am sorry you have had to stop the herceptin and hope you will be able to have it again soon. My nails have started peeling now too and I also still have the yucky docetaxel taste. Good news though is that I can now eat chocolate again so taste buds are definitely recovering. I had to have a second operation again this week as the first one didn't get clear margins and that has delayed my radiotherapy. I will be thinking of you on Monday. Hope you get on ok. From what I have read radiotherapy is easy in comparison to chemo. Fingers crossed. Xx
Nice to hear from you ! No more chemo but I’ve been stopped having my Herceptin until my heart can be checked again :-(
I start radiotherapy on Monday , so hope that’s an easier row to hoe than chemo was.
I still have nails peeling and swollen ankles ... how long does that yucky mouth taste last? I had appointment with the hygienist today hoping to zing but no such luck!
hope you are getting on ok and the wound is improving ... we’ve done well to get this far haven’t we ?
Hi, hope you are all ok. Just wondered if anyone has more chemo to go? Hoping not but if you are am thinking of you. Xx
Hi Everyone, hope you are ok. I am so pleased you have finished all your treatment Helly. I had my follow-up from surgery appointment today. My surgeon was able to tell me that only one of the twelve lymph nodes they took out was affected so I was really happy with that. Unfortunately though the margins were not clear so I am back in for more surgery on Monday. Thankfully this time only as a day patient. I asked him about the seroma and cording Bod. Like you were told he advised to leave the seroma to minimise infection risk. He also said to continue with the exercises and that the cording should settle down. Overall it has been a really good day. I was most worried about the lymph nodes so very pleased with that bit. My daughter also got 2 unconditional offers from universities today as well so it is a happy house up here. Thinking of you all. We have all come so far on this journey. Xx
How are you all doing? Sorry to hear you are having some fluid build ups Louise and BOD, I hope it settles for you both soon.
Just wanted to say thank you to all you 'forum friends' for your support over the last few months, I got to ring the bell today as I have finished my active treatment, surgery done, chemo done and rads done!
I will still be popping in to follow how you are all doing
Thinking of you all
Hi Bod, glad you felt happier after your appointment. I am sure I am in same position as you. I am seeing my breast surgeon tomorrow. I am certainly keen to avoid any risk of infection so won't be encouraging them to drain it again. Will let you know how it goes. Best wishes Louise Xx
Saw breast Care Nurse who confirmed I had large seroma and cording. All very natural response by the body following surgery. The Doctor checked me too but decided against aspirating as it was likely to fill up again almost immediately. Also it could increase the risk of infection They will see me next week when my results are back. I am to go back if it gets hot and inflamed.
I have been advised to continue massaging and doing the exercises to encourage the fluid to dissipate.
Sure hope it starts going down soon.
I felt it was well worth getting them to look at it and I feel much happier now.
Best wishes xx
I had exercises to do and saw physiotherapist 7 days after op. I was discharged as I found the exercises very easy to do. Not now though as I too have swelling spread to lymph area, back and upper arm.
The community nurse (phone conversation) advised me to massage to encourage the fluid to reabsorb. I am also using a cut off ankle sock as a makeshift compression bandage on my upper arm.
Best wishes x
Hi Bod, my surgery was on the 18th and I too feel like I may be getting cording. I am seeing my breast surgeon on Wednesday and will let you know what he says. Did you get exercises to do? I got a booklet and am doing them but it doesn't feel like enough. My swelling is not actually on the wound site but further round the side towards my back. Honestly does look like an extra boob in the wrong place! I guess swelling just occurs where the fluid gathers. Hope you have a good meeting with your breast care nurses tomorrow. Louise Xx
I had my surgery on 19th November and have the same problem as you. My surgery wound is so swollen it’s larger than my other breast. I also think that I may have the beginning of cording. I am seeing the breast care nurses tomorrow but I would be interested in any information that you get about swelling on wound site.
Good luck and Best Wishes BOD
Can I ask did any of you who have had surgery have any problems with seroma? I have a build up of fluid that looks like an extra boob. I had it drained on Friday but I think it filled up again pretty much as I walked across the car park to go home! The nurses didn't seem that bothered about it but just thought I would ask. I don't want to get it drained unless necessary because I read somewhere that if you get it drained too often it prevents your body from 'learning' to absorb the fluid itself. Any advice gratefully received. Hope everyone is managing ok.
Love Louise Xx
Thanks for reply mini mad . I’ve only been offered IV Zolendronic acid, so perhaps that’s just as well with heartburn, as a poss side effect from tabs !
Will let you know how it goes ...
i am also having iv Zoladronic Acid, every 6 months for nxt 2 years.
i have my second dose in January next year.
i tried the tablets first but the heartburn was horrendous.
i finished all my chemo treatment 3 months ago so am on the road to recovery 👍
good luck ladies... one day at a time ...... mini mad xx 💖💖
Morning everyone, thank you so much for all the good wishes regarding my surgery. I saw the breast care nurse yesterday who was happy with the wound so all is good. I have been out of action for a couple of days with a nasty cold which my daughter kindly gave me on my return from hospital (this was slightly better than the large brown rat left at the back door by my dog! - thankfully dog has never done this before and hopefully this is a one off!). Flower I was relieved I didn't have the fluid drained. I couldn't possibly look. A couple of years ago I took my daughter to A&E with a broken knee cap. She was totally fine. I ended up fainting when they put a needle in to her and lying on the floor on their busiest day in 6 years. Silverpixie I will ask about the zolondronic acid when I see my oncologist next week. My nails are all ridged and a couple have horizontal cracks across them but they are still attached. Well done all of you who have started rads. I am guessing mine will start in 5 weeks or so - maybe just after Christmas. Love to you all, Louise Xx
Glad to hear that your op went well Louise and that you are recovering . Good to hear to Helly that the rads are flying in and are manageable !
Going for my radiotherapy plan and mark up tomorrow and then hopefully start mid December . I’m also getting an IV Zolendronic acid twice yearly for 3 years with the Herceptin next time . Anyone else having this ?
sorry to hear about your nails Kaytee .. mine are all marked as well and my toenails are discoloured too. Taste buds coming back slowly and I’ve still no hair regrowth.. my OH and I joke about who has got least hair .. at the mo I’m winning😂
best wishes to you all .. we’ve made it through the chemo... onwards and upwards!
So pleased to hear you are recovering so well Louise
Kaytee sorry to hear about your nails! Did you keep them painted during treatment? I took my nail varnish off today and they are so discoloulored, I can see a line for each chemo. Does any one know how long we should paint them for after chemo finishes?
Good luck with your rads tomorrow Flower79, you will be fine and once you know the routine the next few weeks will whizz by, I have had 13 out of 20 now and this bit has been easy!!
Thinking of you all
So happy to hear that you have a speedy recovering from your surgery. I had some fluid as well, probably they will extract it when you go for a check-up. For me, it was the weirdest experience ever, as you see the needle going in to extract the fluid (if you want to look, I always do ) but you don't feel a thing. It is quite funny.
About Perjeta, yes, it very much can be because of the licensing. It is great that you were able to make an appointment!
I am starting my radiation tomorrow, I hope my skin will handle it well.
Hugs for everyone!
Hi louise (nolucylump)
Glad to hear you are recovering well from your op. I am impressed you are driving already. I haven't driven since June lol, more personal preference than medical, I hate driving so very lucky that my husband has been able to chauffeur me around. Am doing daily radiotherapy at the moment so have a lot of different family members kindly taking me. Extremely grateful to them :-)
My taste buds are back to normal but like you my hair is slowly coming through. My nails have died though, lost one completely, think at least 2 more will come off yet :-(
I am also planning on returning to work in January. Going to work a few hours a day to start and see how it goes.
Best wishes everyone xx
Hi Virag, how wonderful to hear you are cancer free. I am so happy for you. Also incredibly impressed that you managed to keep working. I am looking forward to going back to work in January. I emailed my oncologist to ask about Perjeta. This was a bit cheeky but I had not seen her since July and I was not sure how to get in touch with her. My email resulted in an appointment being arranged for 4 December and I will ask her then. I suspect that it may be due to the licensing of Perjeta in Scotland. I opted for Neo-adjunctive chemo mainly because it meant I could get the 3 Perjeta then along with the Docetaxel. If I had had the operation first I would have not been able to get any at all. I am recovering amazingly well from the op. Have been out and about driving already. The only thing odd I have noticed is that if I press the top of my boob I sound like a hot water bottle!!! I can hear all the fluid scooshing about inside. It doesn't feel like a problem but I am back on Monday anyway so they will check everything then.
Hope everyone is getting on ok. My taste buds are slowly coming back too (yay). Hair is a bit slower (trying to be patient on that one). My user name Lucylump was the name I gave the lump that got evicted on Monday. So now I am nolucylump. I tried to change my user name today but couldn't work out how to do it!
Louise (no longer living with Lucylump).
Huge congrats to getting your surgery out of the way and getting back to work soonish! Usually, they start radiation 4-6 weeks after your surgery, depending on how fast the scars heal.
I have found it quite helpful to work throughout the treatment. It kept me going and helped me to focus less on it. Since my last TCHP, I had received my first solo Herceptin+Perjeta 2 weeks ago, and it was a breeze with very mild side effects. I am now back full time working, and I love it. (Before between the chemo sessions, I was at home for a week and worked for two weeks.)
I also got my first big check-up and (after a false alarm that a biopsy confirmed...) I was thrilled to hear that I am cancer-free for now. Radiation starts next Tuesday, and they did the prep and the marking yesterday. I also started my five years of hormone therapy (Tamoxifen). These should be the easy part now but will see.
As per getting Perjeta and Herceptin, I am sure your oncologist has a reason why he/she would/wouldn't recommend it. Did you ask him/her?
How are you all doing? I can't believe that it has been 5-6 months since we started this journey. Back then, I would have given a lot to jump straight to December, and here we are now.
Thinking of everyone,
Thank you so much Helly. That's really helpful. I am not sure when my rads will be starting but hope to get them out of the way before going back to work. If I end up going back before though I will be in the same hospital anyway just down the corridor. I would quite like to go back to do easy things like sorting out post before doing anything more complex. Xx
So pleased your op went to plan, you must be so relieved.
Are you having your rads before returning to work?
I'm self employed so can organise my own return to work when I feel ready but I have had a phased return in the past for other reasons.
Occy health will support you, usually return to work plans last 4 weeks and you increase your hours week on week, with a weekly review with your line manager, they should also consider making any reasonable adjustments to ensure that you are able to do your job and so you are not discriminated against because of your illness/disability. This could be simple things like having extra breaks, or flexible start and finish times, depending on what your job entails, and as long as you can carry out the main requirements of the job.
Another things to consider that may not come up is whether you need extra help to do your job from Access to Work, some elements are government funded and some are employer funded. https://www.gov.uk/access-to-work you have to refer yourself, I have used them in the past and found it really helpful.
For example if you find it difficult to get to work they may pay for your taxi transport - its worth having a look as it is designed to enable people with disabilities to remain in employment, even if this is only short term support.
Love Helly xx
Hello Lovely Ladies,
Hope you are all doing ok. I had my operation at 11am Monday (lumpectomy plus axillary node clearance) and it all went to plan. Was back home by 11am Tuesday. Couldn't believe how straight forward it was. Surgeon obviously did great job. No painkillers needed either. So pleased to have got that out of the way. Still seems like a full time job attending appointments though - 3 next week and 2 the week after. Then more for radiotherapy. Can I ask is anyone else looking at a phased return to work? I am thinking I need to go back sometime in January and wondered what sort of phased returns people are looking at. I work for the NHS so think I will contact Occupational Health and see what they say. I definitely don't want to do too much too quickly.
Sending love and hugs to you all. Xx
Thank you Flower79 for your response, I mostly worried about the intravenous application because they are always having problems getting a vein so I was hoping to be done with that part but as it is perjeta can only be given intravenously and I was hoping to avoid the picc line.
I just feel down knowing this now.
Glad to hear you are doing good and managing well and thanks for your response once again, I really appreciate.
Kip: Thank you for looking after us July Chemo starters, your advice is very reassuring!!
Aww, Flower79 and Lucy Lump: I hope your ongoing treatment is going well, I'm not having the same treatment as you as my tumour was HER negative so just the initial lumpectomy, EC-T chemo which is all done, radiotherapy (6 down 14 to go) and then on to tamoxifen for 10 years for me!
Im doing ok apart from the lack of energy and strength and the night sweats, and my poor nails, I uncovered them earlier today and they have gone very thick, are bruised on the nail beds and I can see lines on them from each of the chemo's, so I have policshed them up again, no one needs to see that!
On a positive note I went to a 'Look Good Feel Better' session yesterday, I hadn't felt ready to before but Im really not a make up wearer, for my wedding it was just mascara and a bit of lippy so I wasn't sure what to expect. But I highly recommend it if you havent been already. You get given a make up back full of high end products that have been donated, and then you get shown how to actually use each product and leave looking like a normal person again, biggest thing for me was learning how to draw eyebrows without looking like Aunt Sally! You can find info here https://www.lookgoodfeelbetter.co.uk/support-advice/group-session/ about sessions local to you, and you just ring up and ask to book on the next session - you dont need to be referred.
Love Helly xx
I’m only getting Herceptin as well, as haven’t had Perjeta at all . But next Herceptin I’m having Zoledronic acid IV twice a year for 3 years to help prevent reoccurence in bones .
Had my last Docetaxel yesterday with Herceptin so feeling a bit ropey today :-) still last one so another target reached .
Radiotherapy starts in mid Dec plus hormonal tabs for 5 years . I really feel they are covering all bases and have been well looked after . Speak to your team and see what advice they have . Mine have quite happily answered all my questions , however daft they might have seemed at the time 😊
hugs to all you ladies still on this rollercoaster but we are getting there one way or another 😊👍🏻👏👏👏
Hi, I am really worried because I am not being offered Perjeta other than the 3 initial doses which went in with the last three chemo sessions. I am only being offered 12 addition lots of herceptin. I don't know if this is because I live in Scotland. Xx
Good to see you back! I had my surgery in June, and I am Her+ as well. I got Carboplatin+Taxotere+Herceptin+Perjeta for 6 cycles that I finished mid October. Now I am on Herceptin+Perjeta for another 12 cycles in every 3 weeks. They call Perjeta the ‘ golden drug’, and it is a game changer for us HER+ ladies regarding the reoccurrence. My cousin is an oncologist, and she said it is very important to get. These two drugs can be hard on the heart but your oncologist should check your heart function regularly.
I got my first Herceptin+Perjeta a week ago, and there were VERY mild side effects. The combo that they gave me before knocked me out for 10 days (I was still able to work nearly 2 weeks between chemo sessions), but with this one I didn’t have to take a sick day. I was just tired, I had slightly upset stomach for a day or two and some mild headache for two days. My muscle and joint pain got worse, but it is absolutely bearable and doesn’t effect my sleep at all.
This is the easiest part of my treatment so far. Starting radiation and hormone therapy in a week or two and I am pretty worried about them. :/
Congrats to get the hard part done!!!
How are we all doing, I am having my last Chemo today, thank God!
You see i am her2+, DCIS with micro invasion which had 1 lymph node involvement out of 14 removed for test.
Already had my suggery in May.
Had FEC for 3 cycles, then T for 4 cycle, last cycle today.
But I just been told by nurse I will continue with pertuzumah (perjerta) and Herceptin for another 18 cycle meanwhile I was only told previously about continuing only Herceptin for 1 year, I intend to discuss this with my oncologist, but wanted to know if anyone has the same treatment plan as I.
Waiting anxiously for you response. Thank you
Hello everyone, just been reading your woes after reaching the end of chemo. I remember them well. I think we are so looking forward to reaching the end of treatment that we expect the side effects to go as quickly as they came, unfortunately we have to be patient. The baldness, puffy face, no eyelashes look goes with a little time, once the steroids are out of your system that puffy face goes. I never realised how strange I looked until I look back at photos and see myself, I thought I didn't look any different! But I am just about 1 year post end of treatment, have a huge head of hair, almost jaw length, full eyelashes and eyebrows. The energy levels take a while, but build up slowly, your body has taken a big hit...I took up walking, just small to begin with and now do about 3 miles a day quite easily. I do still suffer with stiff joints but my nurse thinks that the menopause which Tamoxifen has brought on. Its not unbearable as long as I don't sit for too long. I swim and do yoga too. I gained weight over the treatment too, I am still a little overweight but its coming off and I feel much more like the old me. I found the mental side quite tough once treatment was over but I attended a Hope course from Macmillan with other people who had finished treatment. Just helps you to deal with the scariness of being back in the real world again.
My fingernails took about 6 months to grow out fully and become normal looking, toenails a bit longer but they are all ok now. I had watery eyes too, they quickly stopped once the eyelashes returned. I haven't noticed a problem with hearing but my eyesight is worse now - could be just age anyway.
Be patient ladies, rest up and allow your bodies to recover slowly.. and take some vitamins or supplements if you can (always check with your ONC team though in case they do not mix with the treatment).. I was advised to take zinc and calcium and glucosamine and choidritin for my joints. Now started swigging cod liver oil... OMG that is disgusting!
I am lucky that my nails have been ok at least so far but I do relate to nearly all the other things you are describing. My last chemo was three weeks ago last Friday. I have been surprised how tired I still am and also shocked at how unfit I have become. Walking up even gentle slopes is a real effort. I was also shocked when I looked at myself in the mirror with my glasses on! I am not liking the no hair, no eyelashes and no eyebrows look and puffy face. Today I started the move more class at the local leisure centre. Most of the others there had finished there treatments I think several months ago and they looked great so there is definitely hope for us too. I enjoyed meeting the other people there. I had terrible watering eyes last week but the lady in Boots suggested Visctears or something like that and that has pretty much sorted it out so I would definitely recommend going in to ask or getting something similar from GP. The other odd thing I have noticed is that my hearing is much worse. It wasn't great anyway but now TV sound has gone up from 50 to 60. I am sure these things will sort themselves out. Sometimes I do read previous months groups for reassurance on this and that helps too. Hope you feel better soon. Xx
How are you all doing?
For those of you who have had their last chemo's what are you main problems and how are you coping?
My main issues are:
Watery eyes which I'm dabbing with a cotton hankie
Weakness and stiffness in my legs which are seriously limiting my ability to exercise
Breathlessness when I walk more than 20 meters
Numbness in my finger tips and discomfort in my nails if I knock them
Weight gain even though Ive not had ANY choc's, sweets, crisps, biscuits or cake in the last week!!
I also feel very up and down emotionally over the last few days, feeling very worried that I might be stuck with side effects and remain looking bald and dumpy forever......................... sorry for the doom and gloom, no one else understands these dilemmas.
Hi Flower, thank you. My surgeon also said that lumpectomy plus radiation leads to the same outcome as a mastectomy. It is really helpful to know you researched this too. I am getting another 12 lots of Herceptin as well. Good luck with your radiation. We are definitely getting there! Even beginning (not exactly willingly yet though) to think about the 'back to work' issue. On half pay from tomorrow.
Love to everyone. Xx
I am was glad to read about your scan result. Fantastic! My eyes were dry to. I used Visine eye drop that worked like a dream.
About your surgery. I asked for a bilateral mastectomy as I too thought it is safer than a lumpectomy. I did tons of research after my doc said it is not and he was right. After the lumpectomy there is always a radiation and it gives the same result as having mastectomy. They did axillary node clearance on both sides for me and they cut our quite a bit from my breast on the left side. As Katy said, the drainage is weird but super useful, for me it was in for 6 days or so.
As for me, I am starting radiation at the end of November after my check up is done. My CTs, MRI etc. are scheduled in the next two weeks, and I will start hormone therapy as well while continuing Perjeta and Herceptin for 12 rounds more. Slowly getting there.
Take care, everyone!