@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.
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.
Day Before Surgery.
I still can’t process the fact that an actual bit of my body is going to be cut off.
Just that. Irrespective of removing the cancer, etc.
@dilly very best wishes for your surgery, yes its weird, give your body, most of which will still be there and healthy, lots of love.
Thanks All. I will contact bcn after chemo today. A chemo nurse mentioned here that they sometimes change medicines or give extra doses….all case dependent. Tbh it worried me as it means more chemo cycles just when i thought i was nearly there!!
dilly all the best for the surgery. Hope it all goes well for you.
Just wanted to say I had a recent scare with a lump near my collar bone. I didn’t have any lymph node involvement in original diagnosis but I found a lump after seeing skin changes on the surface. I called my breast care nurses and was called back the same day and the following day called to say consultant wants to see me in the clinic in 17 days. I had a text confirming date and time the following day.
I went on Monday and spent two hours in clinic having a physical examination and an ultrasound with a consultant radiographer. They confirmed it was fatty fibrosis tissue which was probably caused by radiotherapy. I had lost some weight and the fatty lump was probably there before and the radiotherapy made it fibrosis and therefore felt more lumpy and irregular.
I personally chose to share with a few friends and not post beforehand. That felt right for me.
So if you have anything that feels different contact your team for advice.
@dilly be thinking of you tomorrow.
@fam hello and welcome. Are you also HER2+ ? Some people on this thread didn’t have a complete pathology response to chemo so had Kadcyla, after surgery, which is a combination of Herceptin and chemo to try to mop any remaining cancer cells.
Hi @fam, I was in a similar situation to you. I was supposed to have 3 x EC and 3 x Docetaxel but an ultrasound after the second EC showed little if any shrinkage of one of my tumours. So at that point they moved me straight across to Docetaxel. In total I still had six rounds though, I didn’t have to have any extra neoadjuvant chemo.
However I didn’t have a complete response even to the Docetaxel: the pathology on the tumours once they had been removed, showed there were still live cancer cells. So I’m now having 14 cycles of Kadcyla (plus radiotherapy but I would have had that anyway).
So I’d say try not to worry about this - it’s quite common and they will get it out when they operate. The chemo is still shrinking it which is all good - it will be a smaller tumour for the surgeon to remove. But do be alert to the possibility that you may need kadcyla after surgery - I knew that was probably coming, thanks to all the information I’d gleaned from other women on this thread, so it didn’t come as a huge shock. Kadcyla is more manageable - most people don’t lose their hair and although I have some fatigue, I’m able to live my life fairly normally and plan to go back to work part time while still on it. Good luck and I hope you get more information from your team soon.
Hello and welcome to you @fam We are always happy to hear that someone has been part of the gang for a while and introduces themselves. It’s good to know that we are helping people who aren’t quite ready to join in. The situation you are in has arisen a few times on this thread so you are definitely not alone. As @naughty_boob says, if you are HER2+ then they may offer you Kadcyla after this. I would also ask what @carrie5 has; are you having surgery after chemo? Many women have been disappointed and also blindsided when told that they need to have Kadcyla, BUT most say it is not as hard on them as the first chemo and some of them run crazy long distance races while on it. As @jaygo says, call your team or one of our BCN nurses on 0808 800 6000 to get some medical advice/knowledge. Keep posting; it helps to let it all out.
@dilly It’s a strange place to be, isn’t it. I remember it well. It’s a kind of grief for a part of your body and it’s a big thing to wrap your head around. This might sound odd but I wrote a poem the day before my mastectomy and posted it on Facebook to make sense of it all. I’m going to paste it below in case it helps you.
I called it Mastectomy Musings - A Poem of Gratitude
You fed my child, you entertained
You nipple tassel twirled
You looked great in bikinis
On beaches round the world
My cleavage was phenomenal
On you I could depend
On ugly or bad hair days
You were a loyal friend
I stuck my boobs out loud and proud
My chest was quite exalted
And as erogenous zones go
You really can’t be faulted
You’ve never let me down
Our relationship’s been long
But maybe I just wore you out
‘Cos lately you’ve gone wrong
And though I tried to keep you
It’s clear we’ve reached the end
So I thank you for your service
And I say farewell, my friend
For in saying goodbye to you
This way I get to live
And besides, I get an implant
So there’s nothing to forgive
Farewell, fair tit!
(Not sure why the line spacing is so huge.) Writing things down has always helped me to make sense of life. So I think it’s good that you’ve articulated how you are feeling. Know that we are with you and wishing you all the best for tomorrow. That part of you has done its job, now the rest of you has to step in to keep you safe. We are holding you.
@naughty_boob Good on you for sharing that experience. We all hear that ‘noise’ louder after finishing treatment. It’s not only a reminder to get things checked but encouraging and informative to hear about things that can happen physically as a result of what we have been through. Enormously happy to know you are ok. We couldn’t do without YOU!!
Hi @hedgehog. Great post! In fact, @fam if you do need Kadcyla then do a search on it in this thread as there is masses of information.
I was elated this morning to have lost 4 lbs finally when I got on the scales. I’m still quite a bit heavier than I was the last time I was weighed at Royal Marsden 6 months ago, but at least it’s not as bad as it would have been when I go for my zoledronic acid tomorrow. That’ll teach me not to transform myself into an extremely efficient human dustbin again next Christmas!
XX
@salbert that did make me laugh out loud. I would say that I spat out my super salad with laugher, but that remained in the bowl uneaten (docetaxel…converted it into the taste and texture of sawdust), but I did manage to down half a box of liquorice all sorts!
Well done on the weight loss and what a great verse you have penned. Thank you for sharing. xxx
Thankyou Jaybo, Salbert, Hedgehog……Yes i am triple positive. I guess I was falsely reassured after my 1st scan which showed a size reduction from 26 to 14mm and full resolution of the axillary node. The 2nd one had no change in size which caused a lot of anxiety….more so as very helpfully they did the scan after my oncology appointment so the Dr didnt see the results. I have one more cycle after today. I am on docetaxel, carboplatin and phesgo. Plus luprenon.
Naughty boob, that sounds a very stressful period. Glad its resolved.
Also does anyone know what exactly is the difference if you are given kadkyla? Is it longer duration? Recurrence risk better or worse? Today the nurse suggested i take phesgo at home myself when chemo n surgery done….tbh i was horrified at the idea😂
This group has been really helpful since i have been a silent observer. I really appreciate all the effort you all put in to make it so successful
Hi @fam
It has been suggested that I might be able to do my Herceptin injections myself at home later this year. If this is what is mutually decided between you and your care team, then you will be given training to do it. I would imagine (hope) that if you are not comfortable about this that you will be given the option to continue going to hospital to have it done by a nurse. I feel sure they would not make you do something you are not comfortable about.
Hi @dilly I was quite active here and then I disappeared for a while, I am in that weird post surgery zone where the survivorship really slams you in the face. I was Her2+ and Er+ with 4mm IDC and loads on DCIS that led to 3 surgeries and a mastectomy was the final one. I currently have a tissue expander and I am waiting for my exchange to implant surgery. The oncology did not recommend chemo or radio and said that in my case Zoladex would be the only option with 1% benefit on Predict and high threshold for stopping it at any time. We agreed the benefit is too small to go through it. As much as I am still processing my surgery and I am aware of that, the silence post everything absolutely overwhelmed me. The need of many for me to be back to normal, staying on my own without the medical team, I felt so frozen after the initial ‘it’s over’ euphoria and really still feel I am recallibrating as my life and body was altered forever.
@salbert I love your poem, it is so relevant and captures it all! The grief, the lost feeling of identity, the sexuality, the way the body was…now the challenge of the shouting of the body where you just want to not think about it at all times ( at least with the reconstruction).
@dilly good luck with the surgery tomorrow, I will be thinking of you, good luck with everything.
I am now 3 months post single mastectomy ( time flies!) and as surreal and abstract as it is, it gets better, this wonderful forum, councelling, my medical team and partner helped me to get through it. It will get better steadily day by day, you are allowed to feel any emotion over this!
Drink loads and eat a lot of protein, at least that helped me through x lots of pillows or a pregnancy pillow did wonder to my sleep but I had to adjust to the tissue expander.
Today is the World Cancer Day, I have never paid attention to it before, now it’s been 6 month since my diagnosis, anything with cancer in it seems oddly relevant. I just want to say thank you to all my lovely friendly souls who carried me for last few months here, I could not have done it without you, I am and was a bit intimidated by face to face support groups but this place has been such an important part of my story, so valuable, so full of warmth and care. Thank you!
Hi Fam, and welcome! I am triple positive and only had a partial response to chemo. I was gutted when I found out I had to ride the Kadcyla train but it reduces recurrence risk a lot (I have the stats somewhere) to Phesgo if you don’t have complete response to chemo. Some people have 9, some 12 and some 14. I’m having 14!! Done 12 and I am a bit more fatigued now than I was for the earlier cycles but it’s much easier than chemo x
Thanks for sharing, I’m sure it will be very helpful to others who weren’t recommended chemo or radiotherapy with a HER2+ diagnosis.
I understand your hesitancy of joining a face to face group. I did the BCN Moving Forward course while having Herceptin, I think I had about 6 out of 18 left. It was a good course with lots of lovely people. We set up a WhatsApp group but the communication quickly slowed down to just scanxiety for annual mammograms. I had high hopes and another lady kept trying to arrange a face to face catch up and only I would respond. I introduced the group to a local cancer group and one lady came once, another continues to come. This was for all cancers so it was sometimes hard to talk to others.
Last August, two years after my surgery I joined a local(ish) breast cancer group and I’m kicking myself I didn’t do it sooner. I had heard about them a year earlier but was reluctant to join. They get it. A very active WhatsApp group, answers within minutes, a monthly lunch and a monthly evening meeting, sometimes with speakers. I’ve read in the forum that others have a very active group from meeting at a MF course and others from their monthly chemo starters thread. I just think I was unlucky with where I live and the attendees were from a 30 mile radius of where the course was held, making it hard to keep in touch.
Here’s the link if you think you may be interested. I did a face to face but they lost do some online.
I’m not sure I would be able to inject my own Herceptin, I was lucky to have a nurse come to my home from Sciencus to do mine free chemo finished, paid for by the NHS. I know some people inject Filgrastim during chemo but it’s not prescribed for everyone. I didn’t have it. So unsure if it’s like Herceptin that has to be kept in a fridge, taken out for 30 minutes before and then injected very slowly for 5 minutes.
@Jaygo Well done you on the liquorice allsort consumption. I remember only too well losing my sense of taste during chemo and it put me in a 6 month bad mood at every mealtime. I think this is perhaps one of the reasons for the dramatic weight gain; being able to bloody well taste lovely food again! I’m actually sitting at Marsden now waiting for the weigh-in and bloods. I’m so obsessed that I almost spelt ‘waiting’ as ‘weighting’!! I have my excuses at the ready.
@fam Kadcyla means a longer treatment path but the stats are really good. I wouldn’t fancy giving myself Phesgo, even if they took potatoes away from me for a year. (Probably not a bad thing under the current circumstances!) I think @naughty_boob may have once told me that you can ask for a nurse at the GP to do it so that you don’t have to travel all the way to a hospital. I could be wrong, it could have been someone else, but it’s probably worth asking about rather than do it yourself! Glad @woody2 can give you some info and reassurance re Kadcyla.
Hi @boobitis , good to hear from you. It’s really great to hear where you are now from your perspective when I think back to how you were at the start. It’s heartening for everyone. I send you a big hug and I agree, the women on here are awesome.
Ooh, here I go. Time for them to ask me why I’ve turned into a baby hippopotamus!!
Hello 
I’m new to the forum so just wanted to reach out. This is my first post and not even sure I’m putting it I the correct place. 
Not even sure what I’m looking for by posting. Maybe just to know I’m not alone. 
I was diagnosed with her2+ IBC in September. Following diagnosis, things moved quickly in terms of starting treatment and I am now onto my second round of chemotherapy. First round I had 11 weekly paclitaxel with 3 weekly phesgo. (Meant to be 12 but because of worsening diarrhoea, they stopped at 11). I am now onto my second round with cycles of EC every 2 weeks. I’m finding this tough. Not sure if it’s the EC or the daily Filgrastim injections that are causing the side effects, or is it a combination? Anyway, just wondering if anyone out there is feeling/felt the same. Apologies if I’ve jumped into the wrong place. Thanks for reading. 
Welcome here @onedayatatime and absolutely you are not alone. We’re all at different places on this yucky roller coaster ride and if you’ve time to read even parts of this long thread you’ll find plenty experienced what someone here termed lava bum, and had adaptations to treatment regime to accommodate various side effects. We’ve variously had to retreat to darkened rooms, live on weird diets to cope with taste issues and manage sometimes unhelpful reactions from others in our lives. Our ladies are a tough bunch and we have those who dance half the night, run marathons and generally grab all the better moments that do come. Above all we’re just here and we send virtual hugs whatever folk need to post. So virtual hug coming your way now, hope you can just get through the next few weeks and feel a bit better as the treatment intensity gets a bit less.
A warm welcome @onedayatatime and if only we weren’t all connecting for this reason eh?!
EC can vary from person to person, as can all treatment to be honest. While I found EC hard, I was lucky that the good days outweighed the bad. The injections to harvest the bone marrow is really hard going though, I agree. Here are a few thoughts based on my experience so far.
I am on my 4th round of chemo now and each time I have had the injections. The first couple were really tough. Since then they have become easier to tolerate.
On my first round of EC I kept a really detailed spreadsheet of symptoms that I took to my oncologist. From this, she was able to give me some prescriptions for drugs to ease my issues.
Never feel you have to suffer in silence. Give the chemo team or your breast nurse a ring if you’re struggling. They can help you get the right help to ease any symptoms you are finding hard to manage.
I moved on to docetaxel for my second chemo and I was finding it unbearable. I spoke to my breast nurse to see if the oncologist would consider lowering my next dose. She agreed, and this round of chemo has been much more bearable.
As you say, we are all different, so it may not be possible for your oncologist to accommodate you with a dose reduction, but my take on life is ‘if you don’t ask, you don’t get’.
Good luck with getting the right help to manage treatment. You can get pain relief for the injections, so ask for everything you can get your hands on.
if all else fails, we are all here to lean on.
Keep on keeping on. xx
Hi jayb73. I haven’t experienced the shakes, but my first thought was whether your body is in a bit of shock. It might be a delayed reaction to stress of diagnosis and worry leading up to your first treatment.
If I were you, give the chemo ward a ring, as they know what is in your system and any potential impact.
Hopefully it is nothing to worry about. x