Anyone else having Phesgo injections? Mine started during my weekly Paclitaxel. Diarrhea after the injection and feel a bit rubbish.
Does anyone else gave this? And is it any better when the Paclitaxel finishes and it’s just the Phesgo injections on their own? The weeks when I have chemo but no injection are ok.
Hi everyone
I think it seems normal then to feel a bit rubbish after the Zometa and I certainly had achiness and diarrhoea so that could be due to the Phesgo or the Zometa. Probably both. I was ok again on Saturday so I will know to expect the side effects next time. Great to have this group to double check on it all.
@entropy So sorry to hear you’ve had an infection and more to worry about. Well done on getting to the gym. It’s hard to stay positive all the time. I honestly think what we have been through is trauma and it leaves its mark. The mind can take us back there when any fresh worry presents itself. Keep posting so we can support each other through. It’s good to know that others have been through similar and can reassure. So thanks @jill2 and @naughty_boob as now I also know to expect these things to happen when I have my mastectomy and radiotherapy which are the next things to tick off.
@norts Definitely a few of us get diarrhoea after the Phesgo injection. I’ve not been off Paclitaxel for long enough to know if it’s better, worse or the same but I definitely got it after Thursdays Phesgo and Zometa double whammy.
However, I did get to go out last night and drink Prosecco in an actual pub and watch the football. Shame the outcome wasn’t better but it felt so good to do something normal again after these horrible months. The sun will shine again, literally and metaphorically. 
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Hi Jill
Happily, the itching calmed down after a couple of days, and now back in the gym every other day, which helps with morale. Last week was a tough one mentally, compounded by my trying out how taking tamoxifen in the morning, after having it at night for weeks previous, would make me feel. I was waking up every hour throughout the night when taken at nighttime, either hot or cold or just feeling too awake.
Taking it in the morning was worse. I was sleeping better, but discovered that 4-5 hours after taking it, I get light-headed and feel totally drained and hot flushes kick in waves of nausea, some indigestion, yet stangely hungry at the same time. About 12 hours later feel much better. So timing is key. Feeling good today after taking it at 7pm, so just when the crushing exhaustion kicks in is when its bedtime. Head clearer and more energy. I guess its finding out what works. Could be tricky once back at work as I do shifts, however, I suspect I can apply for day shifts only on medical grounds. Thanks for the support, hopefully on the up now - I think my wound may finally be getting there.
Jo x
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Hi Jo
So pleased your wound is healing. I take my Leterozole at night about 9pm found this was better for me but dont sleep well hence feeling knackered in the afternoons. Well done you pushing yourself and going to the gym. Im 63 always been quite fit but finding things a little more tiring since November after starting the Leterozole I think the symptoms
are very similar. Never sweated this much when I was menopausal. Ive learned not to feel guilty if I have to have a nap when I can and just accepting it even though its as frustrating as hell. What would take me a short time to do I now do over two days. Urrgh!!! Here’s hoping you have a good week and you start to feel better each day.
All the very best.
Jill
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Hi salbert. Sorry you’ve felt so poorly on the meds. I haven’t had to have any of those on my treatment plan but just wanted to wish you well and hope you feel better soon.
Best wishes
Jill
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@entropy Hi Jo. It’s good to hear that you are on the up. Well done for working out the timing on the meds. It’s a really good point and definitely one to share. Really great to hear your wound is healing.
@jill2 Thanks for the good wishes. I’m fine again now. I just took my wig off to make my smoothie as it was getting in the way and I’ve just realised how cold my head is without it. I never realised how much hair keeps your head warm. 
Good on you for not allowing guilt. I’m working on kicking that into the kerb too. I tried to do a 1980s workout last night (Yes, it was a YouTube aerobic workout to 80s music, not actually Jane Fonda or The Green Goddess) and I was so knackered after 5 minutes and 43 seconds that I decided I would not give myself a hard time and try to do 10 minutes today.
Love to all
Salbert
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Well done you. Just ease yourself into it. I find walking is good for me. Never liked exercising much. Tried the gym once a few years ago and had to sit down and put my head between my knees, legs were like jelly I was so embarrassed lol, so never went back.
Just wanted to say thank you for being so supportive and starting this chat. Its been a great help to me and Im sure many others.
Onward and upward.X
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Hi @jill2 Thanks for the image of you sitting at the gym with your head between your wobbling legs! That has given me my first laugh of the day.
It’s wonderful to hear that this chat has been a great help to you as it has been for me. I’d love to think it could continue to support and help other women. I’m only too aware that every day, women have to walk into that appointment and get the shocking news that suddenly alters the course of your life and takes over everything for a while. This wonderful website of amazing women came into my life when I needed it the most so I’d like to think it could continue to be there for the women who sadly don’t know they need it yet. And that has made me feel a bit reflective and emotional so now I am going to think of you sitting at the gym with your head between your legs again in front of all the gym bunnies before beating a hasty retreat and never going back, to make me laugh again!
X
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Hi @salbert,
It is good to share experiences and tips and know you’re not alone. I take my hat off to anybody who can manage to keep up with any exercise after chemo and hormone blockers. I count myself lucky not to have needed chemo. This hotspell makes the nightsweats worse. I woke about 5 or 6 this am drenched ( and freezing cold shortly after) I’d only gone to sleep at 3ish though as my body has settled and decided its very much a night owl and will never accept more than 6 hours of broken sleep ( my fitbit backs this up).
After having about 10 days off from the gym Ive found it harder to run as long on treadmill and for last 5 or 10 mins I’m more out of puff and over-sweating hormone style, gagging for the end to be reached. I feel better after a run but crap on the day between. So instead of flogging myself to do half hour runs, aiming for 15mins/day, because life’s hard enough. In next drug experimentation, I’m thinking of using the stash of omeprazole I got given post op and never used, to combat the indigestion that tamoxifen is giving me.
@jill2.
They’ve been on it with rearranging the RT schedule, will be starting next Tuesday, so will only have been a 2 week delay - it does mean it now clashes with a music festival I’d booked sadly (unless well enough to drive up afer a Friday dose and come back late Sunday - I’m not optimistic on the chances of that being achievable after 3 weeks of radio). I was 52 when diagnosed, 53 now, still not menopausal before, but I am since tamoxifen, so new to learning what its all about - pretty crap really.
I doubt Ill ever be at pre-cancer energy levels, just have to accept the new snail-pace normal (will my employers lol). Perhaps a slower-paced job in future, but it could induce boredom. Can’t afford to retire for another 10 years. My mum was 63 when she got diagnosed but is still going strong at 80 after needing chemo and took it in her stride. Hope we all remain disease free after what we’ve been through, in the future.
Jo x
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Morning Jo
Good news you have a date for starting the raiotherapy, shame you’ll miss the festival but you can go another time. I must be honest only had 1 week and 1 week boost but it did make me quite tired. Fortunately I have finished work so I dont have the added worry of trying to work with all the side effects of the treatments. The Leterozole I feel has aged me but Ive accepted it and go at my own pace I used to be “Jilly Whizzz” now I’m Jillys going for a lie down for a bit. Lol.
Brilliant that your Mum has had such a great outcome and is still going strong. I think that generation ( my mum is 84 and been poorly for some time) are made of strong stuff. The actual radiotherapy sessions are really not a problem just a drag getting back and forth but hey! it has to be done. Just rest if you can when you need to and take each day as it comes. I felt happier once I started radiotherapy thinking that thats another weapon being used to kill the enemy 
Wont be long now. Have a lovely weekend.
JillX
@entropy Jo, it’s great to hear that your Mum is still going strong. So encouraging. I am also hot then cold then hot then cold. All night long it’s covers on, covers off, covers on, covers off. One of the crap side effects of chemo has been that I have four toenails that really need to fall off now but are hanging on by a thread. This is making exercise really hard as they are so damn uncomfortable. My oncologist and nurses at RM keep saying ‘Have they STILL not fallen off?’ It’s driving me mad. I am also 53, by the way.
@jill2 I was wondering yesterday when putting on make-up and despairing at the state of my head, whether the ageing is irreversible or whether I can get back to looking semi-decent again. I’m not giving in without a damn good fight though.
I have a bunch of teenage boys descending on me for my son’s 15th birthday this weekend. Thankfully I can put them all in our large bell tent so don’t have to have them in the house. 
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Good idea about the tent. I have one 35 year old 6ft 6 son at home but not for much longer he’s renovating his house. I shall miss him but not the running around after him. I guess its a Mum thing with boys. You’re toenails sound really painful. I’m ten years older than you so I can’t blame it all on the Leterozole I try to keep the wrinkles at bay but I think Im fighting a losing battle lol. Im fair skinned and very freckley so trying to age gracefully as my Mum would say. Unfortunately you’ve had to lose your hair which is a huge part of feeling good about the way we look. Not sure if I’ve mentioned it before but I was all set to have chemotherapy as thats what I was told was happening so had my hair cut really, really short in preparation for the inevitable then I didn’t have to have it. It grew quite quickly as I’m sure yours will. Hope the weather stays lovely for the weekend and they all enjoy it. You too! Keep slapping the moisturiser on. In my case at the moment my boob gets more moisturiser than my face.
JillX
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Might be worth a trip to a podiatrist to sort your nails out. I remember hearing a podcast by @radchat with a lady from tiptoe podiatry. The podiatrist couldn’t understand why oncologists/NHS don’t refer all chemo patients that affect their nails or feet. Docetaxel and Paclitaxel are well know for causing hand, feet and nail issues.
I was lucky with most of my toenails during chemo but afterwards they have begun to split part way down, my finger nails were worse, lots of infection around the nail bed, ridging or indents on the nail surface, soft. Even now 7 months on, I’m still struggling with them. A local Podiatrist was really helpful and suggested products that didn’t damage the skin and nail clippers rather than scissors.
Have fun hosting a group of teenage boys, I bet they won’t even sleep! Just keep them fed and watered and leave them be. Happy Birthday to your son.
Hello everyone,
I was due to have a mastectomy yesterday but did not go.
I’m terrified and not sure of my next steps.
I am still trying to ge to another hospital as I have lost trust in my team but it is a slow process.
My breast cancer was missed during mammograms and clinic visits nearly 3 years ago and is now stage 3C and in my lymph nodes.I am considering contacting a solicitor.
Not in a great place right now.
Xxx
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Oh @chakakhan I’m so sorry to hear your not in a good place.
I can understand why you didn’t go as you e already mentioned that you weren’t happy with your team. Have you had any luck with a second opinion?
You need to do wha5 is right for you as it’s you that has to live with it. I had a bilateral lumpectomy and still after a year find it difficult to look at the scars and my boobs in the mirror.
I know the BCN nurses are not available until Monday but maybe you could talk to MacMillan who will have someone available tomorrow
https://www.macmillan.org.uk/ Speaking to someone may help with some of the upset.
Take care and know we are thinking of you
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Thank you naughty_boob,I had a rushed second opinion but it was so vague and I they didn’t have all my medical documents it was a private one.I am still waiting an NHS one.
I have spoken to the Macmillan team a lot in the past and they are a great service but they can’t help me at this stage I need confidence in a team going forward.
You are so positive and encouraging to others on the forum including me and I feel better speaking to others that get it.
Thanks for sharing your experience it is important to do what is right for you as you say.
Take care Xx
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Hi Chakakhan,
It’s shit when things get missed, you are not alone. Mammograms are much less than perfect and not something to fully rely on IME, which makes self examination all the more important.
I suspect some types of tumours are harder to spot on the screen than others. I know that my mother got told at the time that there were signs on her prior mammogram too, and she was a grade 3 when found ( had 1 lymph node with it).
As I said up thread still fit and well 17 years on from her diagnosis and 80 now, so it can still turn out ok. Also, on my mammogram report it said no associated DCIS and likewise on USS, however, intra op there was, which doubled its overall size. I found the lump myself just before I was due my next mammogram, and tbh, looking at the scans myself ( I’m a nosey bugger so asked) I thought it didn’t stand out ( though not a trained radiographer). So I’m not convinced that it would of been spotted had I not found it.
It is vital that you get some form of treatment asap, as you know, these things are time sensitive. Are you on hormone blockers meantime?
I can fully understand fear of mastectomy, I have it, I know how bad I’d feel about having one (I’m also still single and hopeful, so would not want to deal with the loss of confidence that entails).
The way I see it hospital-wise, is that there are many different teams and specialists, so if errors are made in one area, it doesn’t mean that other areas are any better or worse than in another hospital. A surgeon has little to do with the mamography side, and oncologists are another section entirely too. I get the loss of confidence in the hospital, unfortunately mammograms have their limits and also human error of anyone looking at them is possible. You are having a crap enough time as it is. Focus on getting through treatment and access as much counselling as you can along the way as what you are going through is traumatic. Contact your breast care nurses and tell them what happened and your thoughts and fears from your end and they will be able to put you in touch with people who can help you move forward from the situation.
I’d like to see a situation where one day people have the option to be more involved to the extent of being included in the MDT meetings. Seems odd to me to have all decisions medically made on treatment as a fait a complit, then get told how its happening, without the input of the person its happening to - though I suppose that is what the biopsy result meeting is kind of ment to achieve.
The problem with being informed about errors prior to treatment, while openness needs to happen, it doesn’t change the treatment path we are on, but adds anger, sorrow and mistrust. I think it would be better to be told these things after treatment, as to find out during just adds enormous stress.
My heart goes out to you, i hope you can access as much support as you need with this.
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@chakakhan I love these women for answering you so quickly over the weekend. How are you doing now?
My breast cancer was missed too but even my new consultant said there was something faint on the scans and mammograms but she could see how it got missed. Push on with finding a team who suit you so that you can get on with treatment.
My mastectomy is going ahead on the 7th August. I spoke to my consultant on Friday. I can tell you exactly what happens in detail so that you can get an honest opinion. For me, having faith in my new team is everything and changed the way I felt entirely. I really want you to feel the same.
xx
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Hi all
I have been reading your stories, Iv cried and laughed and I’m pleased there is a place to come and talk to those who are sharing similar experiences x
I-have been diagnosed with invasive 3.6cm grade 3, HER2 positive ER and PR negative.
Was suppose to be a small DCIS and had surgery booked to remove this. But having had an MRI they found it was much larger. Someone decided to do a further test on my original biopsy and that’s how I got the HER2 diagnosis.
Everything has been a waiting game and with that there has been much speculation. I sometimes have to remind myself to stop!
I had a CT scan today and am waiting for an oncology appointment. the MDM meeting is held on a Thursday so I’m guessing that they will discuss my CT results and I will get news following this?
Has anyone else had CT prior to oncologist appointment and what were the waiting times!
My 62 days is 9th August I beleive they have to start treatment by then? X
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