Thanks @wizzer I’m finding it so helpful to hear about others surgery experiences and choices. For me I can make clear arguments in both directions at this point in time ! Trying to give myself a break from thinking about it until I emerge post chemo side effects hopefully this week as I think it’s clouding my judgement a little.
I was on a similar regime to you, but also with Carboplatin every three weeks, it’s hard at the beginning not quite knowing what to expect, but the nurses will look after you really well on the day.
Hi everyone! I’ve not been on the forum for a good while and if looks like so much has been going on since then!
I have been on Kadcyla since March and just about to have cycle 9. I have also been taking Letrozole for the same length of time.
I am getting pain in every joint which I assumed was due to the Letrozole but I only seem to get it for week 2 and 3 after Kadcyla. Then the week after Kadcyla I am completely pain free.
Im not sure if the Kadcyla causes the pain….or makes Letrozole pain go away!
What I was wondering is if any of you ladies on the same treatment get anything similar?
@rhombusrhombus it sounds like that extra carboplatin does make things worse It’s good that you’re close to finishing
My sister advised me to write out a table of will / maybe /won’t regarding whether to have chemo or not and it really helped in getting to my gut decision about what was right for me! Maybe doing something similar might help when your heads a bit clearer??
If it all goes smoothly a lot of women seem really happy with reconstruction, but I’ve also heard stories of multiple lumpectomies, or not feeling happy with the results of reconstruction or having problems I havent heard any women regretting going flat but there’s probably some out there! You really need a crystal ball with all these decisions
@rhombusrhombus Even more extraordinary for your friend to have been there when he walked off the stage. Poor man. It must have been horrendous. Congrats on finishing chemo. That’s a bench slap. (We slap benches on this forum if we don’t have bells!) Ah, decisions, decisions. So much easier when they don’t give us the choice. I have discovered we cannot post pics of body parts on these forums so alas, I cannot share pics of my fabulous tattoo publicly. However, if you want to see what my reconstruction looks like, we can DM. I’m happy with it. In fact, it looks a damn sight better than my real one now!
@wizzer I was super nervous about starting chemo but got given a lorazepam and drifted away into a hazy and very pleasant state so that I didn’t give a damn. I then realised for the next chemo that I didn’t need to worry, so I didn’t bother taking it from then on. Did you see the fabulous Dr Liz O’Riordan walking the catwalk in New York this weekend covered in glitter and sparkles with her single mastectomy on display? She was raising awareness and funds for metastatic breast cancer and I love the woman even more now. She looked awesome.
Hello @cheche - So good to hear from you. We have had so many Kadcyla girls on here that I really hope that you get some responses soon on this.
We went back into the studio on Saturday for our first rehearsal for our Winter Wonderland Christmas show. Instant happiness. I was so happy to see all my students again. As you can see, I am jumping for joy!
@cheche I have had increasing joint pain and stiffness since I started letrozole, I was on herceptin ( so not quite the same as you) from start of chemo and then concurrently with the AI but only had the pain when the AI started. After struggling for almost a year I was told to take a week off the letrozole and then start anastrazole. The latter is no better but that week off was amazing. I had a bit of nausea probably with changes in hormone levels but no pain! I didn’t find my first consultant at all helpful, but he left and the new team at least offered to change something.
Very best wishes to everyone, sorry Im a bit quiet just now on the thread, my little dog has a mammary tumour and I’m having familiar conversations about tumour sizes, margins and chemo as unfortunately the lump wasn’t benign. My dogs got me through the bad days of my treatment so I absolutely owe my sweet little rescue Dachsie the best I can do. I will keep following your progress everyone and I love hearing of all the creativity!
Oh @carrie5 I am so very sorry that you are going through this again with your beloved little companion. So many of us have spoken on here about how much our dogs and cats have helped us on this journey and it seems unfair that you are having to go through another horrible time. You have shown such incredible spirit, wisdom and resilience throughout, especially so soon after losing your husband, that many of us have found you utterly inspirational. I want to say to you that now you must lean on us. You who have given so much of yourself should be able to be supported in return. Sending you love and strength. XX
Thanks @salbert ! I DM’d you! Love this photo so much!
@carrie5 Sorry about your puppy, it must be tough going through it all again. Lots of hugs.
Thank you @wizzer - this is truly excellent advice! I will get onto it. Love a spreadsheet!
I have a question for anyone who has cold capped and retained some hair - what did you do with it? I’m bald mostly on top but can do a combover, and if I wear a hat can get away with no one really knowing I’m missing hair. But I’m thinking about how it will be when it grows back, did people shave and start again? Or just persist with short bits and long bits? Any advice would be great.
@rhombusrhombus I also ended up bald on top with some straggly hair around the back and sides. Wasn’t a good look for me so I ended up shaving the whole lot off and starting again. The regrowth was better than it had ever been and I now have a thick head of hair so it was something of a reset and I’m glad I did cold cap as I was told it helped regrowth and in my case, this seems to be what happened. I know there are lots of variations on what people were left with after cold capping so I hope you get some other responses.
@shady I would agree that it’s a beautiful piece of artwork. Some people are so talented!
Hey @rhombusrhombus im cold capping too, my last cycle is next Friday and so far I’ve got some definite bald spots but still some hair. What hair is left however is horrendous I’ve dyed my grey hair dark brown since my 20s so have a stripe of grey that’s about an inch with brown ends in a pixie cut that now looks like a mullet. It’s truly terrible so I cover it most days with some for of bandana but I’ve been wondering what to do when I finish too. I think I might go very very short but not buzz cut and hope the regrowth fills in the gaps quickly. Very much looking forward to the return of eyelashes and eyebrows!
Also currently in the surgery discussions, I’m leaning towards mastectomy and flat closure mainly because I have small lumpy boobs (so will find it hard to self monitor for recurrence) but it’s a lot to think about for sure! Especially through chemo brain fog
I am new to the group and so relieved to find a supportive, welcoming network. I was diagnosed with stage 2a HER2+ in July and just finished my second round of TCHP chemo last Thursday. I just turned 52 years old. Part of me is still in shock and just gliding through this, I think.
I am cold capping and wearing the ice mitts and booties. One of the toughest things for me so far has been the fatigue (days 3-7/8 are particularly rough) and the brain fog. Today I did gentle yoga and am trying to be active to potentially help with these issues. I am a single (widowed) Mom of three so it’s tough not to have energy or a clear thought pattern. Any tips that have helped? Thanks so much!
@rhombusrhombus my sister is a spreadsheet queen - she creates one every year for cooking the Christmas dinner!
I have decided to clipper my hair grade 3 before starting next week as my friend Marnie didn’t and then regretted it as she said it was much more shocking having it come out in clumps when it’s long. She then shaved hers off super short and when it came back she went from having fine blond hair to thick brown!! I’m personally hoping to become a redhead for a change I used to have mine bleached grade 2 at uni so it’ll feel like being young again
Mine is so straggly at the ends, I think like you @eils85 I might go for a pixie too and try and grow it back more evenly. But I think I have to wait at least until some of it starts growing back on top. I suppose I’ll just keep going with my hats until then.
I did also consider the full buzz, which I’m interested in, but again it’s tough to know at which point in the regrowth I should go for it.
Welcome @nikkicole . I’m 5 months in and I think I’m also still in shock. I started on TCHP and also found the same days as you particularly rough. They changed the T (Doxytaxcel) to weekly paclitaxel as I was really sick after my first round. It helped me a bit. It’s great that you are doing yoga, they do say some gentle movement is really good, a short walk etc. Somedays I couldn’t manage it at all, but when you feel up to it it’s great.
I’ve found helpful - drinking as much fluid as possible, and if you feel depleted getting some extra in the IV during treatments helped me a lot. Also big advocate for acupunture too, I’ve found it incredibly helpful with symptom management.
Have you also joined the monthly chemo starters? - Lots of people have great tips on there and you can look ahead and backwards.
Welcome @nikkicole it sounds tough to be doing this as a single mum. Great suggestions from @rhombusrhombus . Definitely respect your energy levels and do what you can on the better days. Gentle movement seems really helpful for many ladies on here, whether thats a quiet walk, moving to music in the kitchen or getting out to somewhere pretty and just breathing, yoga sounds a great approach. We probably cope by moving through this lot in a bit of a daze, the brain fog does lift when you’re done. You’ll get better at managing those bad spells after chemo. You don’t say how old your kids are, hard for them to have a poorly mum if they’ve already had something happen to Dad, use every support available. Best wishes.
Hi @nikkicole 52 years old seems to be a very common age for diagnosis on this group. It was mine too! Gosh, that sounds really tough going through this without your partner and trying to be a single parent to three children. That in itself makes you Wonder Woman, in my opinion. Well done on the yoga. I tried to walk every day and pretty much managed apart from the odd duvet day which I allowed myself. I also had a playlist of my favourite musical theatre tracks which actually uplifted me and gave me energy. I played it on my walks and for me that was a little bit of magic. Oh and cake. I called in at Flower Farm for tea and cake as I could still taste sweet things (savoury was lost to me for a while but returned with a vengeance!) and just these little treats to myself really helped. Also, take all the help you are offered. I hope you have a good network around you. Anything you want to offload, you can do here. There is always someone who will be ready to offer a friendly and supportive shoulder.
@rhombusrhombus When I shaved all my hair off, it transpired that it was the EC that had made me lose it all but that I was already growing it back under the 12 x weekly Paclitaxel. It was just so short and fine that I hadn’t realised. It really grew back quite fast once it had got going. 2 years after completing chemo it was back to the length it was when I started treatment.
@rhombusrhombus I am day 8 after cycle 2 and my hair is shedding quite a bit but still hanging in there. I went ahead and got a pixie cut after cycle 1 so it would be a smoother transition if I need to shave it all off. Are you using the Paxman system?
I have looked into the Paclitaxel and my oncologist mentioned in the beginning some studies published earlier this year that removed the carboplatin completely from the regimen and got similar pCR results. Thanks for the reminder about acupuncture. I was doing that before diagnosis so definitely want to start that up again. My hemoglobin and other RBC counts get lower each time so I don’t know if they would consider an iron transfusion at some point. I will ask about the extra fluids during treatment, too! I’ll look into the chemo starters groups. Thanks for all the great advice!
Thank you, @carrie5 . I figured out that one of the anti-nausea medications (compazine) was also contributing to the brain fog so have switched it out for the other med (zofran) that they gave me for nausea and now it for the primary now. Hopefully that will help this round and beyond.
My little, not so little, ones are 12.5 year old twins and an 8 year old. Luckily beyond the super young age, that would be so challenging. Their Dad passed away of brain cancer so this is quite a shock to be going through only 1.5 years later.
! Trying to give myself a break from thinking about it until I emerge post chemo side effects hopefully this week as I think it’s clouding my judgement a little.
It’s good that you’re close to finishing 
I havent heard any women regretting going flat but there’s probably some out there! You really need a crystal ball with all these decisions 
I’ve dyed my grey hair dark brown since my 20s so have a stripe of grey that’s about an inch with brown ends in a pixie cut that now looks like a mullet. It’s truly terrible so I cover it most days with some for of bandana but I’ve been wondering what to do when I finish too. I think I might go very very short but not buzz cut and hope the regrowth fills in the gaps quickly. Very much looking forward to the return of eyelashes and eyebrows!
