HER2+ and need some buddies

[carrie5]

Hello @farli and welcome, although of course we are sorry you are here. Completely understand your worries about the effects of chemo on your dancing career. Are you going to join the monthly thread for February chemo starters? That would give you a peer group who are all at that stage and you can share experience.

Can you get some mental health support asap to help you through, try your hospital team and GP.

You sound as if you are being really positive with your plans for getting through this. There will be ups and downs but you will get through this.

Neuropathy - there are very different experiences if you look back a bit over this thread. Personally I developed some in hands and feet in the last few weeks and it improved very quickly when I finished paclitaxel. 8 months on I just have a bit in my left foot which I think is a pre existing problem that got aggravated. You have our shining example @salbert as our resident expert on staying with the dance world. Hopefully you’ll be able to harness the release and joy your dance expertise can give you in getting through this. Many of us have found movement, which might just be short walks, and being outdoors really helpful.

Hair. Are you going to cold cap? Paxman website is a very helpful resource. It doesn’t work for everyone but I kept my hair.

The ‘Look good feel better’ workshops on hair, skin, nail care etc are really good so have a look at those. BCN also offer some zoom workshops on exercise, diet etc.

That’s enough from me, you’ll get other responses on here with various experiences and ideas. Continue to harness your tendency to worry into positive plans. Good luck with the chemo.

[sassy3]

@farli Hi, I cold capped and would recommend you give it a go. It’s not for everyone, but although I had some thinning, I kept the majority of my hair. I did have it cut short, and I felt that helped with the weight being taken out of it. I was on docetaxel and phesgo, I have neuropathy in one foot, it doesn’t affect walking so hopefully it may not affect your dancing (we are all different) don’t be afraid to tell your team about your concerns, they can sometimes adjust treatment. Good luck with your journey

[sassy3]

@erica Hi, I think we’re on a similar timeline, I also still have a tender boob, which feels a bit lumpy. It’s hard not to feel worried, but I’m trying to convince myself that this is my new normal! Easier said than done! It’s scary losing that safety net isn’t it?

[farli]

Hi Sassy

Thanks so much for replying. Sorry you’re on a similar journey but thank you for your insights. Great about your hair though, that’s helped a lot. Thank you. I will do the cold capping. I have discussed with my oncologist, she is lovely and I do have complex mental health conditions to consider aswell. I asked her about Paclitaxel and she is considering it but I don’t know yet for sure but worried about the neuropathy with that too. My mental health has declined fast since being diagnosed so trying to deal with that too. Thanks again, I really do appreciate you taking the time to reply xx

[farli]

Thanks so much Carrie. This is all so helpful. Has eased my mind about the Neuropathy somewhat too. That’s really kind of you to share your story. Yes! Salbert is incredible! So nice to see other performers here too. Makes my heart sing. Thank you re the look good, feel good too. I’ll take a look. Your insights are really helpful and I am so grateful to you. Thank you very much

[sbee]

Hello @farli - just thought I would say hi & that I understand. I have had some struggles with depression in the past & whilst I am not a dancer, I work in the creative industries (used to be in high end fashion) where shallow as it is - looks & style play a big part. I have spiralled a lot since diagnosis.

I too, cold capped as my hair was very important to me. I did lose a lot but it also helps with regrowth. I am 6months post chemo & have a full head of hair. Happy to share pics if it helps.

Xx

[woody2]

Can I ask how your liver coped? My levels have been high throughout and my onc is sending me for an MRI to check it’s ok. Just got 2 more to go. The fatigue seems to be getting a bit worse with each cycle. Did you find that?

[caz591]

My liver was fine fatigue did get worse everytime I sat down i fell asleep so I kept myself busy. It’s 3 weeks since I finished kadcyla and im surprised I don’t feel as tired, all going good get my 1st mammogram on 12th February not looking forward to it as my breast and under arm still tender x

[naughty_boob]

Glad you managed to post your questions. I would highly recommend reading through the thread. Most of the subjects you have mentioned have been mentioned before. You can also use the search option for specific things which will search the whole forum.

From what I have read and talked to others about, Docetaxel can cause more hair loss than Paclitaxel but it depends on your dose. There will be many on what appears to be the same regime as you but their dose could be different. Also the amount and type of hair you have at the start can impact the amount you loose or appear to. If you have very fine hair you will probably notice the hair loss more than someone with a lot of hair.

https://coldcap.com/ This is Paxman’s website and you can look up your regime ( scalp cooling outcome) and the percentages of hair loss.

[farli]

Hey Sbee. Awww so sorry to hear about your depression. Mental health is awful isn’t it. So hard to explain too. So lovely you work in the creative industry too. Yes, it’s such a struggle isn’t it. I have looked everywhere for a wig that you can put up into a bun or braids so I could still go to class without anyone noticing but there’s nothing. I have bought one which has cost thousands but I’m nervous because it won’t be my hair and I’m sure people in my class will notice. Awful how much something like this can affect our mental health and self esteem. I have declined so much since diagnosis it’s unreal. I am very worried about getting Neuropathy aswell. Petrified as it will affect dancing and reading things online is scaring me senseless. So glad you’re hair has come back! It sounds gorgeous! I wouldn’t mind thicker hair, I must admit. I definitely want to cold cap. I’ve booked a consult with Daniel Field on Tuesday. See what they say. Honestly, this journey is very expensive so far! Did you get any help with your depression during chemo? I have just reached out to an old consultant of mine. How are you doing now? Thanks so much for replying. I really do appreciate it

[farli]

Amazing. Thanks so much and re the search bar. I hadn’t noticed that! That’s really good to hear about the dose too. I am hoping for the lowest doses possible as I am very sensitive to meds, even paracetamol and ibuprofen.

I do have fine hair so I am very worried but thanks for the capping info. I definitely want to do that. I think pacitaxel feels like it would be better in general from a dancing perspective it’s just the Neuropathy I am petrified about but then again you can get it with Docetaxel aswell. Gosh, It’s so hard working out what’s best. I have asked for a 2nd opinion so at least I will have to either reassure me about what’s best. Thank you so much for helping me with this but also posting too! Really appreciate it and so kind of you to reply. Thank you

[naughty_boob]

Some people have used cold gloves and socks/slippers to help prevent neuropathy. Places like the Christie in Manchester sometimes offer iced compression arm and leg devices to see if it helps.

I personally used ice packs and slipper socks I purchased online after each infusion for a few hours over a couple of days. I wasn’t able to take them with me as it was an hour to travel, then premeds and cold cap added another hour before the infusion. They would have defrosted. The unit didn’t provide a freezer for storage. I had some neuropathy that came and went so my team weren’t too bothered. I occasionally get tingles or numbness but it’s minimal. Ice therapy isn’t for everyone and can cause problems in itself. So do your research. You can chat it through with your team or BCN nurses.

[farli]

Thanks so much. I will ask at the pre meet on Tuesday, I can maybe order some from Amazon then. I’ll definitely do my research. I already suffer with Raynards but only when it’s really cold like minus temps. It’s all so hard making decisions about which drugs and plans are right for you. I feel like neither are great from a dancing perspective. I really appreciate you sharing your experiences of the neuropathy. I will cope with pins and needles but not numbness. I have a phobia of being numb! Barely have Injections at the dentist. Great to have your experience though. Really helps to hear others experiences, much appreciated xx

[farli]

Bless you. I can relate totally. It is so hard. I said to my onc I am battling 2 illnesses and both of them have implications for the other.

You look amazing! Your hair is absolutely gorgeous! I hope mine grows back like that! Was it that colour before?.it’s so nice. Thanks ever so much for sharing . So nice to chat to you xx

[sbee]

Gosh, thank you … i will delete now as am mega self conscious!

It was more ‘auburn’ and has come back much darker. But apparently that’s because it is virgin hair and hasn’t seen the sun. Ironically, it used to be down to my (.)(.)’s! It has a curl in too.

I don’t think the team have known what to do with me really regarding my mental state. I don’t know either at times. They have paused / held on any medication as they are concerned regarding my mental health. My dark sense of humour ponders which one will take me first at times!

[farli]

No problem at all. Totally relate. It looks really lovely. I have very dark hair but it’s really fine. But it’s naturally curly, not a curl that you leave, I have to work with it so I always wear it straight! Yes, I can really relate to that. Just had the conversation with them about that. I have really struggled and I haven’t even started chemo yet, goodness knows, how I will manage or how they will manage me. Pretty sure they will be stopping treatment not long after I’ve started. Panic attacks are becoming worse, the nearer I get to start date. For me, the issue is not having regular meetings before I start. I like to talk things thru and all my worries and there is no space to do that and I am finding that so hard. I am in process of finding a mental health consultant who will step in and be part of my mdt. Probably going to have to pay them but I think it will be worth it. You are a strong person to have dealt with so much and you have given me some strength and inspiration going forwards. Thank you! Sending you healing hugs xx

[salbert]

Hello everyone

What a busy weekend it’s been on here. Good to hear from you @erica. Glad to hear you’ve finished chemo and radiotherapy. Sometimes I have a little wobble about recurrence, generally if I’ve read or heard something that triggers it. Then I remind myself that our stats are really good and that it isn’t expected to return and that if I am going to worry about recurrence then I may as well also worry about getting a brand new cancer or getting run over by a bus. I’m really not being flippant; this is just my way of turning my head around if I find myself worrying. It’s true that any aches, pains, lumps or bumps tend to make us worry in a way they wouldn’t have done pre-bc, but I get EVERYTHING checked out now. I go straight to my team and get them to take a look. I have had a couple of areas that have concerned me but they’ve proved to be scar tissue and a cherry angioma. I’m confident that I am on top of my health in a way I never was before. I also live for the moment in a way I didn’t before. I’m grateful for every day and I try not to think ahead apart from looking forward to the next trip or fun activity I have booked. Erica, you are normal. I hope you find the ways that work for you too so that you can put your mind at ease. Love to you too.

@Jaygo Good call re counselling. I found it invaluable along with this forum. As I have often said, the mental battle is as tough as the physical one, tougher for some, and we must do all we can to fight back.

Hi @farli Classes went well thanks. You’d be pleased to see the Hard Knock Life choreography. It’s looking great. We even have one of our little Acro dancers doing some flips! Wow to you for doing just about every style of dance going! There is SO much perfectionism in the dance world, more than in the acting world which is more forgiving, I think. The Principal of our performing arts school is an ex-ballerina who freely admits that she is a perfectionist. I think this is common in the dance world. So it’s unsurprising that you are hard on yourself. It’s easy for me to say cut yourself some slack but you really need to be that best friend to yourself right now and think of what you would say to your best friend. It’s hard to feel out of control if we are people who are usually so self-controlled. I’m sure you will apply all the discipline and hard work that you do to your dance, into tackling this bc. If you can’t compete in May then you will be able to go back to competing once treatment is finished. I got a little neuropathy right towards the end of Paclitaxel which I was told would clear up again and it did. I lost a lot of hair cold capping but it’s grown back thicker than ever in no time. Loads of people have done really well on it. As @naughty_boob suggests, have a read back on this thread as there is loads of great info and positive experiences that will help you to worry less. Definitely stop Googling! Lots of stuff is negative, outdated and plain incorrect. Stick with this website, MacMillan and Cancer Research UK. Also as @carrie5 suggests, take any mental health support you can get. And bless you but I’m definitely not incredible. Just talkative and eager to share my good outcome and positive story with as many women as possible. Just to counterbalance all the bad news that is splashed all over the internet. I finished Phesgo in April, had my reconstruction in May, put on a show with 90 kids in October and performed in one myself in November. Of course, this isn’t everyone’s experience and I’ve been very lucky to cope with the treatment very well, but I just want you to know that it is possible. You may be the same. I felt terrible mentally when I was where you are and it was a daily struggle to get through the next half hour, let alone the whole day. BUT it does get better when you start treatment, even if it gets harder physically at that point.

@sbee YOU STUNNER! You are giving me young Kristin Scott Thomas vibes. I’m sorry you took the pics down but not before I saw them! It doesn’t surprise me that you were in high end fashion. You ooze style and class. (What I wouldn’t give…) I have also had periods of depression and it makes me grateful that I learned so many coping skills back in my twenties and thirties which I have been able to put into action during this bc shit show. I too, got dark and curly hair when it grew back. Most odd but definitely a thing. I remember once being so crazy that the GP got frightened and got the psychiatrist to see me that afternoon who sat me right across the room on a chair by the door. I can laugh about it now but it was awful at the time. It turned out to be a bad reaction to Citalopram so it was really no surprise when I had a similar bad reaction to the steroids. Mental health is so complex and my heart goes out to anyone struggling.

I have a blood test, oncologist meeting and my 6 monthly zoledronic acid on Thursday. I find myself preparing my explanation for the weight gain, hoping and praying I can lose a few pounds in the next 3 days and admonishing myself silently for questioning whether a small bag of crisps is going to make any difference. If I manage to lose enough in time for Thursday, I will reward myself with a fudge doughnut!

I just want to thank you all for your honesty in sharing so much and your incredible support for each other. It makes this forum such a wonderful place.

Happy Monday all, and for those for whom it is not so happy, I pray for strength, courage and peace for you.

Salbert

xx

[fam]

Hi All

I hope you dont mind me joining in. I ve been watching and rrading this forum since October when I was diagnosed. Just too much ongoing to formally join in….a bit overwhelmed. Its been a very tough time since it all started. Have been on chemo since november….6 rounds in total. Had my 1st scan after 2 cycles, 2nd one today after 4 cycles. The size of the tumour reduced from 26mm to 14 on first scan. However today there was no change in size. The density appeared a bit better. The axillary lymph nodes 2 involved are fully resolved. I am scared re the no change in size in todays scan. Does it mean it will not be fully gone after chemo? Its just so much to take in

[Jaygo]

@fam hiya. Good that this forum has been of support even if you’ve not felt ready to chat, but equally great to have your voice in the mix.

The best thing would be to give your BCN a call and ask if she can talk you through stuff, or arrange for her to pose your questions to your oncologist in order that they can ease your concerns.

[carrie5]

Hello and welcome @fam and as @Jaygo says do talk to your bcn or the bcns on here. Just wondering what your overall plan is and whether you’re due surgery after chemo. I hope you can get some clearer explanation of what all this means asap. Very best wishes, do let us know how you get on.