Breast Cancer Now Forum

Sounds like it is going as well as it can Debs, which is good to hear.  hope the scan proves positive. Best of luck. Jayne xxx ... View more

Thanks Debs. How are you doing? X ... View more

Hi all, I spent 12 nights in hospital on IVs & came home on Wednesday evening. Apparently my immune system had completely crashed. Unfortunately I tested positive for COVID yesterday. So treatment delayed at least another 2 weeks. Just feel like I have a bad cold at the moment and waiting on antivirals.  Can't seem to get s break at the moment. Bit of a nightmare situation.  Love & hugs Jayne xx ... View more

Hi Alex, welcome to our group, you don't need an invite at all.  So sorry to hear about your struggles. 18 months ago I was diagnosed with heart failure & pneumonitis, both treatment related. I was struggling to walk, complete menial tasks and had shortness of breath due to fluid build up. It was very scary. I did have a chest drain to remove excess fluid which really helped. I don't know if you are able to have this. My secondaries are in my liver and bones but I have ongoing issues with my lungs due to the pneumonitis. We are here for you Alex, when you need us. Not sure if I have been much help but hopefully things will improve once your treatment starts. Best of luck Jayne x ... View more

  Hi Louise,  I was diagnosed with secondaries to bone & liver just under 3 years. I didn't have aching bones on paclitaxel, certainly nothing to excited about. Good news you have plenty of options available. I had letrozole & everolimus when first diagnosed & it did the job for nearly a year. Unfortunately I am currently in hospital as I developed a throat infection and high temp. I had my first eribulin about 3 weeks ago and it seems that the treatment plus infection has had a dier effect on my immune system. I am waiting on my infection markers going down so being pumped with iv antibiotics.  Listen to your body & go with it. Take each day hour hy hour, try to lock forthcoming appts away until they arrive. I know it's so so difficult but it really does help.  Love jsyne xx ... View more

Not sure how that spoiler got there 🤔 ... View more

  Hi Louise, pleased to hear you are fine after 1st treatment. Sounds like you tried the same drugs as me & like you I had no luck. I have finished Paclitaxel now,  as again not doing the job we hoped. I struggled on it due to weariness, numbness & sore nail beds. I did loose my hair within a few weeks. However I must stress that no 2 people are the same. So you may be fine and have no side effects at all 🤞I was given liquid piriton before each treatment and feel asleep almost immediately. Hope that helps.  Best of luck Jayne  ... View more

Thanks Debs for your reply. Unfortunately we are at high risk of clots, having cancer. I have stopped the pain killers as the pain has eased and I needed to go to the loo, shovelling down laxatives has helped thankfully. 🥳 I was hoping I would feel less tired, having stopped the painkillers, but still sleeping so much, although feel brighter in myself. I am at the hospital tomorrow for bloods & should start the new treatment on Saturday. Just have to see how it goes.  jayne 🤗 xx ... View more

Hi Louise, Things are not great for me at the moment. I ended up in A&E on Friday, with a suspected clot. I was in excruciating pain. It transpires I have a bad clot in my liver. I came home late Sunday evening and are now injecting my self with blood thinners twice a day.  Have been on a small dose of paracetamol and codeine phosphate so I am completely bungeed up  too. I am shovelling done liquid laxative to help but no real success as yet. I am also totally exhausted, I am  sleeping most of the day and night. I cannot  keep my eyes open. To make matters worse I was out in a ward of 6 people 4 of which had dementia & spent the whole time rambling or shouting. I know the NHS is stretched but why put someone with secondary cancer and in extreme pain in such a ward! It was an absolute nightmare and did nothing for my health & welfare.  Jayne x   ... View more

Hi Debs, so sorry to hear about the infection, you poor thing.  I do hope you are well on the mend & feeling so much better. Jayne xx ... View more

About Hi Daisy, I have no idea about CEA levels, so not much help. I saw Consultant today and the Eribulin has been delayed another week to give my fingers another week to improve. I will have been off treatment about 6 weeks by then. I am concerned as have some pain under ribs and an ongoing cough, which could be due to the cancer. All in all not a great day for us and we are both feeling quite low about everything. Unfortunately the weather hasn’t helped, it is so wet, dark & miserable. Tomorrow’s another day, as they say.  Love Jayne x   ... View more

Hi Debs, rant as much as you want, that’s what we are here for. Totally understand what your saying about loosing your hair. I had chemo first time around and lost my hair but it grew back. I have lost It again and like you feel I wont have hair again plus I had to then tell everyone I had secondaries, as no hiding loosing your hair. On the plus side I am not unhappy to lose hair on other parts of my body, especially my lip & chin… I was always plucking renegade hairs from there… Every cloud hey.  I haven’t improved as much as I thought I would, having had a months break from Paclitaxel. I now also have some discomfort around my ribs, which I assume is from my liver. I am going for blood tests and to see consultant Thursday & if they are happy with everything, I will start Eribulin next Saturday.  I struggled with my energy levels and numbness to hands & feet with Paclitaxel.  love from Jayne x ... View more

Hi Debs, Yes I am starting Eribulin, hopefully on the 3rd or 4th March. I say hopefully as have to get through all the tests, I am having an echocardiogram tomorrow. I was diagnosed with heart failure about 18 months ago but thankfully the medication has restored my left ventricle. 😁 I have to have an ECG and bloods then see consultant on the 3rd and should have Eribulin the same day or the next day.  I am concerned that my energy levels have not improved as much as I thought they would. It is now 3 weeks since my last treatment. had a bit of a moment this morning thinking it was most likely the secondaries in my liver causing the issue & the uncertainties about the SEs of Eribulin. I am struggling with my finger nails, more of a nuisance than anything, which doesn’t help. Anyhow was able to bat away the negative thoughts and as it is bright here today going to get out for a drive in the car.  How are things going for you? Love from Jayne xx   ... View more

Hi Daisy, Try not to be too disheartened, it happens.  I should have been speaking to consultant today, about my treatment going forward but it has been delayed until next week. I’m am glad to have another treatment free week as really struggling with SEs… fatigue and sore hands and feet.  Jayne x ... View more

Hi Daisy, initially I had Paclitaxel booked in weekly, although as time went on I ended up missing a few due to low neutrophils. However after the first 3 months I was switched to 3 weeks on and a week off. So that’s s pretty normal.  Looks as though I am changing treatment now due to side effects plus although the chemo has reduced some of my liver lesions,  unfortunately some have increased in size. I am seeing consultant on Thursday so will know more then.  Jayne x ... View more

It took a while for me to recover and it was complicated by the fact I was diagnosed with heart failure at the same time. Both conditions have similar symptoms, so I probably had it (pneumonitis) a fair time before it was discovered. It took me a while to recover but wouldn’t be sure if that was because of the heart failure, as my left ventricle was severely impaired. Fortunately I have made a very good recovery from the heart failure, although on meds for it. I still have some issues with my lung and needed a chest drain a couple of months back but it is not too bad day to day.  I have struggled with the Paclitaxel but have persevered since August. It looks like they are looking at another option for me. I will know more next week when I see my consultant.  I wish your mum a speedy recovery  Jayne x ... View more

Hi Debs, if you are on steroids they will be why you are waking up. I had steroids for my first 3 treatments but then stopped after that and slept much better.  Jayne x ... View more

Hope yesterday went well Gillyflower. I have my chemo on a Tuesday too at Christie’s in Manchester. ... View more

Hope your first one went ok Debs. You’ll sleep better tonight, after the piriton but the steroids will also kick in, which can make you very alert. I only had steroids for the 1st three chemos and each week was at a slightly reduced dose.  I haven’t bothered with a wig, I just wear hats. Although my niece is getting married at the beginning of May, so might opt for one for the wedding.  jayne xx ... View more