@pollyanna1 - I’m so sorry to hear this, what a worry for you. Please let us know how it goes. We are all thinking of you and hoping that it is just another horrible chemo side effect 
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@pollyanna1 i understand completely where you are coming from, I’m going on Saturday for a brain scan for my headaches and after my visit to a&e because all my problems seem to of been in my face and head, but I’m trying to constantly remind myself that they are crossing the t’s and dotting the i’s, and hoping I will feel a million dollars once it’s done and hopefully get the all clear, so really trying to think of it as a positive thing and not let the little doubts overtake all my thoughts.
Hope your appointment comes through quickly and you can move on with some positive news
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@elle16 @pollyanna1 I’m sorry to see that you both have all this extra stress going on with the scans. I hope you both get on ok, and hopefully it is a case of ruling things out. It’s good they’ve got you both getting in and fully checked but I understand it must be really anxiety provoking!
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Thanks @altoan and @belle1
Yep feel like keeping hair gives me a sense of control and impacts my privacy so slightly obsessive about it. I am doing paclitaxel every two weeks and think this seems heavier than AC on hair so feel it’s this one. Showing no signs of slowing either.
But this pales when considering scan anxiety I always go to worst case scenario myself so feel bad thinking about hair when people have way more worries. So hope @pollyanna1 you are not stressing too much and best of luck with the result hopefully it will be a weight off your mind. So much of medicine is ruling things out and being thorough so hope it goes well for you. X
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@SL255 - just to reassure you that after my initial big shed of hair following my switch to docetaxel, it’s now eased off. I’m hoping it will continue to slow down so I can get through the last treatment and keep most of my hair
I think we all have our focus and worries during this whole hideous process. I really wanted to keep my hair if possible as my youngest son was so worried about me losing it. Obviously I realise it’s not that important in the scheme of things but I will be gutted if I lose it now - just as I’m reaching the end of chemo! Good luck with yours, Emma x
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Just seen the oncologist- he thinks the tumour has shrunk 
Confirmed 2 more chemo to go, and my PICC line comes out on final chemo day. Will prescribe me stuff to stop me feeling so sick during chemo next week. Will see the surgeon again in next couple of weeks, and surgery could be as early as mid August! 
So all good news. And he couldn’t believe my 18 mile run on Sunday!! 
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Yes @ivy-cat I am the same and also it impacts ability to get my life back in lots of ways. I haven’t told many people and as such the hair is the big tell all. I have come this far and feel like falling at last hurdle will be hard. But hoping against hope it will slow down. On plus side symptoms from Paclitaxel are so much easier than AC no nausea appetite normal and can even enjoy a coffee. Also less brain fog. So it’s strange that the hair is going in opposite direction but it must be because it’s dose dense.
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@gromit12 - so pleased to hear this! Gives me hope for my surgery! And such good news that the tumour has shrunk, Emma x
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Just got home from my first Abraxane chemo and it all went to plan thanks for everyone’s support earlier.
@gromit12 amazing news so happy for you. Helen x
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Hey everyone,
Sorry for radio silence. Last night was brutal diarrhoea and ended up taking Loperamide for it today. No other signs of NS so doctors aren’t worried for now but have really struggled to be hydrated today. Could do without the weather too!
Met my other Oncologist tonight and Radiotherapy and that is starting on 19th August, 3 days after we return from Spain. He was amazing and has suggested I also join a trial with him and my other Oncologist to be given Abemaciclib for 2 years alongside Tamoxifen. It’s a kinase inhibitor and used for metastatic disease but they’re trialling it on Stage 2/3 BC now and it’s looking like it adds 6% to prognosis so I agreed to it, especially since it seems to tolerated well and it’s ‘only’ 2 years.
On the radiotherapy front, they’re doing to chest wall, axillary cavity, supraclavicular fossa and he also added in the internal mammary chain between the boobs as he said that can be a leapfrog risk area. I agreed since they’re already blasting me anyway across a large area. Told me about the breathing technique and that it’s unavoidable that they will catch a little of the lung and cause scarring but it shouldn’t cause issues. The main thing is breathing in to shove the heart to one side.
For those who were worried about wait times, I asked him about optimum timings. Because mine is through my work insurance, I could have had it 4 weeks after chemo ends so he had no reason to lie but he said that 4 weeks is the absolute earliest as you need to recover and 6 weeks is perfect however, he said up to 12 weeks makes no difference from 6 weeks and it’s only after 12 weeks that you’re losing time. I see loads of people on here worrying about 8/10 week waits so thought I’d mention it as it may reassure them.
He agreed that ovary removal makes complete sense for me rather than Zoladex but they’ll start it at some point until I can have surgery after radiotherapy. Will hopefully book a date for that next week but it’s looking like cancer treatment may spill into 2025 a little (excluding reconstruction) if radiotherapy takes me too long to recover from. Urgh. Hey ho.
@pollyanna1 and @elle16 Im so sorry about your scans. I hope yours goes well this week Elle. Pauline, do you have a date for the MRI? I have been super wobbly and my balance has been off and I’ve had some near misses. It’s been worse on the Taxane than it ever was on EC so fingers crossed it’s just the toxicity! X
@SL255 I’m the same as @ivy-cat in that I had an initial shed (which I’d actually say was more like a completion of some dead hair that was just hanging around) after first Docetaxel. Since then, it’s not done a big shed again and I’m past the point on the 2nd Docetaxel when it happened on the 1st so would have expected it by now! Hopefully, that’s it for you! Hair is growing on Docetaxel a fair amount and I’ve noticed facial fluff coming back and leg hair a bit too. Annoyingly.
@gromit12 that is the BEST news! Well done you!!! That must feel like such a relief to get some good news after such commitment to this process! I’m so happy to hear it and it’s so nice to see positive news on here!
@hc1973 so pleased the Abraxane went well! I hope you get a good sleep tonight and feel okay tomorrow!
I’ve decided that the greatest gift anyone could give us would be an IV to use at home. Life would be so much easier if I could just have 2L a day of fluids running into my veins. I feel pathetic but I find my whole day is based around bloody water and mouthwashing and everything is such a chore. I hoovered today and mopped the floor. It took me 5 times what it should have and I had to take breaks because I was sweating. It’s starting to become a lot harder that my contribution to life is so small. I know it’s temporary but it’s getting a little harder to climb out of the mental hole of “God I’m useless!” each cycle. I guess that’s the cumulative fatigue but I’m not sure I can imagine being a go-getter ever again after such a long malaise. I’m sure I’ll get there but I just can’t imagine it. Night sweats tonight don’t help. They make me feel all old and compromised.
Wow, that was a long one. Sorry if I missed anyone! X
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Crap, one more thing I gathered for everyone is about Tamoxifen/AI’s. I asked why people only do 5/10 years and he said that that’s just the way it’s done. I mentioned that it seems to be rife to see recurrences within a year of stopping them and he agreed that, for hormone receptor positive cancers there seems to be a link. I asked how easy it would be for me to stay on Tamoxifen for life and he said “Not a problem at all. Any GP should agree to it because it’s such a cheap drug!” I asked why people are turned down and he said that anyone should pester their doctor for it if they want to stay on it and they should eventually get their own way. Thought it may be useful to know! He’s put down for me to be offered it for life now and I feel like it’s taken a weight off me!
I slightly fell in love with this new Oncologist if I’m honest. He had really thought about my cancer and me before I got there. He had an inquisitive brain that was obviously wanting to optimise everything. It felt fresh and new to have someone different looking at me from both a targeted therapies/hormone therapies and radiology point of view. He’s a Professor of Clinical Oncology. It seems there’s a difference in that Medical Oncologists do the Chemo bit while the Clinical Oncologists do the Radio/Targetted Therapies/Hormon Therapies bit. I was sooooo nervous about starting the journey towards Radio but it turns out it’s a whole new world with some cool options. X
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Good morning @swk1981 do glad you are ok, was a little worried, 
Thank you so much for all that information as usual you are a fountain of knowledge. I’m going to write some notes from your information and take them with me to my oncology appointment next week 🩷
I know it’s tough at the minute but you are so nearly through this disgustingly cruel part of the treatment, before you know it you will be lying on a beach in Spain with this time being a memory. You’ve got this !!! Xxx
Morning @swk1981 hope you feel brighter this morning.
I too seem to have joined the diarrhoea club, not one I wanted to join! I’ve got Loperamide but did anyone take buscopan as well I’ve got such bad stomach cramps.
Interestingly enough my oncologist has also suggested Abemaciclib for me too, I’ve been told it will be for 2 years and really can make a difference.
Amazing that all these new drugs and targeted therapies are coming through all the time. Sometimes I get a bit stressed about the reoccurrence. Then I think of all the new drugs and things that they are bringing out and who knows what will be available in 5 years time let alone 10!
Josh has his last Chemistry A level today, he can’t wait for it all to be over!!
I hope everyone is OK today, big hugs all round. Helen x
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Morning ladies,
Thank you all for the messages it means so much.I’ve my positive pants back on and like @elle16 said it’s dotting the i’s & crossing the t’s. I really do think it’s fatigue.Hopefully I’ll get an appointment soon.
I think when we hear the word scan it just triggers us off.
I got my appointment today for radiotherapy 3rd of July exactly 3 weeks from my last chemotherapy, I also start tamoxifen that day. They said if I feel up to it and as long as no infections and bloods are ok. It’s strange last week I was hoping it would be a bit longer, now I’m ’ let’s Get this over and done with’
@gromit12 I’m delighted for you, that’s amazing news, its great to hear people getting positive news. Although you still amaze with your runs xx
@elle16 sorry to hear you have this extra worry of a scan also, I really hope all goes well and will be thinking of you. I try to think if I hadn’t been diagnosed with BC, I’d be thinking totally different about tests and scans and Drs wouldn’t be as concerned either. It’s all precautionary. ( this is me trying to remain calm and positive lol)
@swk1981 I hope you’re starting to feel better and get a bit of an appetite from side effects. It’s great to hear you’re getting some dates also. My radiotherapy regime sounds very like yours also. I’ve to start tamoxifen on the first day of radiotherapy, I’m going to be on it for 2 years and then Anastrozole for 5 years. I asked why they’ve changed it from what they initially said and they explained new research shows this would be more effective for me taking in my type of Cancer and age (52)( This heat and hot flushes is getting to me also, I think I’m going to have to accept it’s going to take time to get back to a some sort of new normal.
@hc1973 so glad to hear your treatment went well, hopefully next few weeks will be good to you xxx
@SL255 I really hope you manage to keep your hair as you’ve preserved so well with it. Please don’t feel bad about others having scan, your worries are as valid as everyone else’s. We’re all doing amazing to get this far 
I’m sorry if I’ve left anyone out but hope everyone is doing ok or managing as best as they can.
On a positive note I have a mobile home on the coast ( an hours drive from me) and have decided I’m going to go today. My family will stay the weekend, my younger sister lives 2 hours way is going to come on Monday with my 12 year old nephew and stay to Thursday. Then my 2 nieces( my sister who passed recently daughter’s) will stay with me for a few days. Well that’s the plan at the minute lol. If I get an appointment for MRI it’s just a 45 minute drive.
So I’ve got my factor 50, extra large parasol and a large floppy hat. Think that’ll cover it 
.
Pauline xxx
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@pollyanna1 Have a fantastic weekend Pauline, the weather looks fantastic. A weekend by the coast sounds like the perfect medicine. Hope your appointment comes through soon. Helen x
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@swk1981 do you know what that trial is called? I’d like to ask my oncologist if it’s relevant for me when I get to that point. Still got surgery to go but it’s good to be prepared… 
@kartoffel I’ve also been offered Abemaciclib due to my node involvement and high risk of recurrence. I wasn’t told it was a trial so not sure. Although I am going through BUPA so not sure if it’s different. There’s so many amazing treatments for us all these days. I hope all your surgery goes to plan as well x
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@hc1973 @kartoffel I’ll send him an email but it sounded like it was a nationwide trial. I think there are small outlandish trials by specific teams that happen and then there are ones that NICE are involved in, seeing whether the standard protocol would benefit from it. I think that it is basically a case of any oncologist being able to offer it to patients with ER+ HER2 -ve breast cancer who has a higher risk of recurrence (assuming the cut off may be lymph node involvement for that) as it’s been so successful for metastatic BC. A friend has breast cancer liver mets and has been disease free now for 5 years after Abemaciclib. I didn’t know it was that drug that she’d been given until I mentioned that the oncologist had suggested it so I’m now 100% on board taking it.
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