Breast Cancer Care Forum

Hi, just popping back on this thread after stopping Eribulin in July and moving on to Carboplatin. Wow! Everyone's been busy and moving through treatment options too. I had 2/3 cycles of each of Eribulin and Carboplatin followed by scan. Neither worked and there's been spread in liver and enlargement of other abdominal tumors. I am now on IV Vinorelbine having it day 1 and day 8, I'm day 6. I can't find Ramade's post that Stillhere refers to, but I too have bloated belly and what feels like fluid gathering in the pubic area. I had it just on the left side previously around enlarged lymph nodes but it seems to have spread which is annoying and uncomfortable but not painful. I was warned about constipation with vinorelbine, which isn't a problem for me with a high output stoma!  I quite fancy bananas and custard!!! ... View more

Sorry for taking so long to respond, thank you all for your replies.   Shelly, I hope that you are getting on well with taxol. I found it to be a kind drug and tolerated it very well for 12 (I think) weeks with primary 5 years ago, and had 2 cycles of 3 doses back in March/April. Unfortunately it didn't work for me, fingers crossed for you, I've read on here ladies who have been on it for 5 years plus!   Clinical trials - I've been turned down because of the amount of treatment I've already had over 5 years. It's a difficult one, but if a drug works for me how do they know that it's that drug on it's own or in the combination I've had? They need to test on people with a similar history unfortunately.    I saw my oncologist on Thursday, the latest chemo is not working for me so we really are scrapping the barrel now. He reckons my liver has 6-8 weeks if it remains unchecked. I've had blood tests and see him next week and possibly go on to vinorelbine which has a lower % chance of working but with more intense side effects.... but we'll give it a go.   Linda, I've seen the same oncologist for 5 years and whenever I've seen someone in his place I've been disappointed. I saw a different (junior) onc a few weeks ago before the start of my last cycle, and was shocked and disappointed by her consultation, lack of empathy, failure to listen, and much more. Because of that I pushed to see my onc asap - he stopped chemo, brought my scan forward and hence I saw him this week, he also agreed with me that the letter (consultation  and clinic notes) from the other onc was not fit for purpose. She's basically wasted several weeks and subjected me to unnecessary chemo. I've had 2/3 separate cycles of 3 drugs so far this year: paclitaxel 3 x weekly doses then a week off, eribulin 2 x weekly does then a week off, Carboplatin once every 3 weeks. I don't know what the frequency will be for vinorelbine.   For now I need to get nausea under control (liver and bowel mets).   Linda, I managed 3 years "clear" after my primary diagnosis in September 2014. Bone mets confirmed dec 2017, but who knows how long they were bubbling away for before being spotted? Then spread to abdominal cavity jan/feb this year.... rapid deterioration from there. How about you?    Time to get some sleep xx   ... View more

Sorry to hear you're all here and some for the second time. It's second time around for me too. I found last time (dx sept 2014, FEC-T october 14 to april 15) I lost my eyelashes and eyebrows several weeks after my last taxol which was weird as my hair had grown really well throughout taxol!  ... View more

Sorry to hear this Shelly, but hopefully this will be the drug for you. I'm nearly at this point too. I've tried 3 chemos for 3 cycles followed by scan. I saw my onc last week as I can feel lumps in my abdomen, he organised a CT scan but I cant see him for 2 weeks as he's on holiday. He also cancelled my 3rd cycle due next week as no point if it's not working - so from that he agrees with me that the lumps are more spread otherwise he'd push on with chemo. We've tried the most effective IV chemos, so now it's working through some tablets and potentially hormones to see if anything can help. I've been turned down for trials because I've had so much treatment already.  ... View more

Well done with the flumes Wally! What a fun nanny! I went horse riding after walking my dogs yesterday, collapsed with exhaustion and back pain for the rest of the day, but had fun first. CT scan done. Just a 2 week wait now for the results.  I've heard of people with fluid build up which needs draining, but not heard of the fluid having cancer. Hope it's not too uncomfortable. ... View more

That's really sad news FF. I don't come on here very often at the moment, but seems everytime I do someone else has left us, and it's always the names I've come to know and admire. RIP Bon x ... View more

You're not alone Wally! What has your scan shown? Do you know where the mets are? Letrozole and Palbociclib are pretty kind, they kept my bone mets stable for 10 months until my verebra one started growing. And there are lots of reports on here from other ladies who have had success for much much longer. I think my oncologist should have been more pro-active between October and February, if he knew the mets were growing in my vertebra he should have been looking for signs elsewhere and picked up my abdomen much earlier. xxx ... View more

Hi Wally, sorry you've not had many responses, but abdominal mets is rare as you've been told. I was diagnosed in February this year, although I'd had seriously notable symptoms for 4-5 weeks before confirmed diagnosis.(constipation, nausea, vomiting, intense cramping labour-type belly pain), unable to eat, 3 stone weight loss. I has primary breast cancer in September 2014 (mastectomy, chemo, rads, also tried tamoxifen and Anastrozole but didn't get on with them). They found bone mets December 2017 and January 2018 in my spine T12, pubic bone and sacrum. I was put on letrozole and palbociclib for the bone mets. There was a bit of activity in T12 in october 2018 and it was blasted with cyberknife.  I had these awful pains and symptoms in January but all the docs said it was fine, no sign of obstruction - even though I couldn't keep food down for a month! It didn't make sense to me, something was obviously not right. I saw 3 GPs, my oncologist, spent a night in A&E and saw a doc on holiday in  February. I had a routine MRI booked for my return from holiday and was immediately taken to A&E because there was indeed an obstruction - 7 tumours blocking my small bowel. I had ileostomy surgery and was in hospital for 2 weeks being tube fed for a week. They didn't know if I'd survive the surgery.  So that was 6 months ago. I've been on chemo since March with scans after 3 cycles. Unfortunately they have not been successfull in controlling it so have changed chemo as each scan has show growth and/or progression to my liver. I've got a scan this afternoon as I can now feel lumps in my abdomen and find I can't eat much, so I'm worried it's now encroaching on my stomach. Sorry for confusing post, I was typing late last night and struggled with editing it!!! X ... View more

Sorry to hear that Holeinone. I had an opposite reaction to chemo both in 2015/6 for primary and now for secondaries. I suffered badly with IBS, bloating, pain, constipation,  food intolerances, but during and after chemo (for a couple of years) this went away. I gradually got the symptoms back again, but since being back on chemo (and having part of my small bowel removed thanks to tumours) I have no abdominal pain and can eat most things! ... View more

Hi, I'd recommend looking up cancerhaircare.co.uk website and Facebook. They are the only charity in the UK specialising in hair care and loss for cancer patients. I'm very lucky that they are based only 25 mins from me near to my hospital in Stevenage. Although I have met ladies there who have travelled from Oxford and further afield for their advice.   In 2015/6 I cold capped through 3FEC and 11 weekly taxol. My hair thinned from straight dark shoulder length to chin length wavy, greying (why is it that the grey is more robust and the pigmented hair falls out?!) It did actually grow during taxol and filled in the loss with a good inch or 2 of new growth - natural layers! My eyebrows thinned and never grew back, which is a bonus as they were huge fat caterpillars! My eyelashes departed after chemo had finished but regrew very quickly.   I'm going through chemo again for secondaries, no cold capping this time. I had no hair loss during 6 taxol (may be it remembered). Then moved onto eribulin,  after 4 weeks I really thought I was going to loose it all. No clumps or patches, just constant shedding. I started wearing hats and scarves and got a new wig (worn twice). Then it stopped. I had 6 doses of eribulin over 9 weeks and my hair looks much better, glad I didn't shave or cut really short - under my hairdresser's advice, I wanted to. I've just started Carboplatin so let's see what thay does to my hair! I've learned to thicken up the eyebrows with powder and pencil. Still got lashes. I've found root touch up spray (a shade lighter) to be great for filling in the thin hair and hiding the scalp, also tinted dry shampoo spray is good between washes ad it gives some body.    It's an individual decision. Some ladies feel better about having the control over hair loss by shaving or going short when they choose, rather than leaving it to chance.    Look up cancer hair care, they had lots of information on their website.   Good luck with the rest of your treatment xx   ... View more

Lorraine, I still haven't discussed timescales directly with him. When my bowel obstruction was identified I was very poorly and they didn't know if it was operable, and if not it looked like I had as long as it took malnutrition to take me. We had a brief discussion about DNR which we agreed we weren't ready for unless I was going to come round as a vegetable. Onc did say we would start talking in months and cycles for the first time.  But somehow my surgeon was amazing and I've bounced back, keeping myself well informed and on top of the nutrition. After my latest scan he has indicated that if we cant get the liver under control, if could be ad short as 3 months before liver gets too broken to keep going. Presently affecting about 10% of the liver and it can function  well until 80-90% diseased. I'm not suitable for rads or any other surgical intervention. So come on carboplatin!! ... View more

Lorraine, I still haven't discussed timescales directly with him. When my bowel obstruction was identified I was very poorly and they didn't know if it was operable, and if not it looked like I had as long as it took malnutrition to take me. We had a brief discussion about DNR which we agreed we weren't ready for unless I was going to come round as a vegetable. Onc did say we would start talking in months and cycles for the first time.  But somehow my surgeon was amazing and I've bounced back, keeping myself well informed and on top of the nutrition. After my latest scan he has indicated that if we cant get the liver under control, if could be ad short as 3 months before liver gets too broken to keep going. Presently affecting about 10% of the liver and it can function  well until 80-90% diseased. I'm not suitable for rads or any other surgical intervention. So come on carboplatin!! ... View more

Thanks Lorraine, great news on your results. I hope the neuropathy settles, I've been warned that this is a risk with Carboplatin as it was with taxol and eribulin, I've been fortunate on that front so far. Has your oncologist or GP signed form DS1500 for you? My onc did it as soon as my organs were affected, it fast tracks you to benefits and can support your ill health application. We are technically terminal when we get stage 4 diagnosis but it appears that insurance, pension etc take terminal to mean you've been given a specific time frame under 6 months. I had to be referred to occupational health, complete forms for them and provide contact details for GP and oncologist who in turn had to report on my health and prognosis. You do need to have a thick skin as to support your application the medics need to report on the very worst case scenario and say that you are not fit to work and have a poor prognosis. Good luck with whatever you decide to do xx ... View more

Well that's it for me on Eribulin, progression continues in my liver so moving onto Carboplatin next week. Onc said I could stay on Eribulin ad I'm well on it and it's probably slowing growth but he wants a better result and I may not be strong enough for Carboplatin in the future.    Hope your results are better and you can stay on this for a while and it's a kind drug. Xx ... View more

Katzygirl if you go back a page to living with secondary breast cancer you'll see a big pink Start New Topic button to start a new thread. This Bone Mets - please join in is general daily discussion, but more specific topics are under separate threads. ... View more

Grumpy that's a huge amount of juggling drugs to combat side effects and then treat the side effects themselves. I'm not surprised you're finding it all difficult to cope with! I must admit, my meds box is a bit like that, I think I need to work out exactly what I do need, but find it changes through the cycle.  Loperimide is a fun one as too much sends you yoyoing with the movicol.  ... View more

I recorded it but haven't watched it yet. Seems a shame not to show some positivity but I guess the reality is you have to kiss many thousands of frogs to find the cancer conquering prince. I'll watch it on a good day.  ... View more

Hi ladies Sooo fatigued this weekend, Friday was day 8 of cycle 3. Hair loss has stopped.  Vicky, I'm seeing onc on Wednesday. I've done some googling on platinum chemo, looks like anything ending in "inum"! Sian, your horse sounds amazing! And having quality time away with him must be so special rather than ending up with daily chores and not so much fun. Lorraine I should get results on 10th. Big week for both of us. I worked for a school trust so we have local government pensions. I was only there from Sept 2016 but the policy is that if you're eligible for ill health retirement, then they top up the pension as if you're employed to retirement age. I'm 52 so they've added 15 years to my fund...... I am very fortunate, so lucky to have changed jobs when I did. I can get 25% of the pension value as a lump sum plus annual pension. Because of length of service it's only about £3500 a year but tops up PIP nicely.  The procedure is that either the company can suggest retirement if you've had lots of long term sick leave or you can request it. There's a danger that if you request it and you don't quality, they can then dismiss you on capability grounds as you've said you're no longer fit for work! It's worth looking into though. Lots of hoops to jump through. I applied when I came out of hospital on 6th March, retirement date is 7th June but I'm still waiting for lump sum and first monthly payment. More news in a few days after scan results. Dawn x ... View more

Hi ladies, I'm now on cycle 3 of eribulin and find I'm tolerating it as well as can be expected. I'm having CT scan tomorrow with onc appointment booked for 10th July, chemo day 8 is Friday so I'm presuming if they report it quickly and it's bad news, they should tell me as it would be pointless having treatment? Vicky, so sorry to hear you have had progression after a promising start. I feel like I'm going downhill rapidly since October when bone mets became active. This is my third treatment since secondary diagnosis - palbociclib/letrozole, taxol and now eribulin. Onc said one of the platinum chemos is my only option next. I do hope your next treatment is more successful, what are you on now? Lorraine, your last post was 2 weeks ago saying you were due a scan in a couple of weeks - any news?  London1, are you still on eribulin? How are you getting on? I've lost more hair on this than on other treatment, very very thin. Started wearing scarves and got a new (old) wig last week which I wore out for my daughter's birthday. My main SE is extreme fatigue, I have to seriously pace myself and can only comfortably manage one thing a day - yoga, walk the dogs, take kids to social or extra curricular activities. Feel very lazy but if I do too much I just spend then next day or 2 in bed. I have also got back in the saddle, albeit very tentatively with a leader, instructor and someone walking beside me. Extra caution is because I have a new stoma as a result of my abdominal mets so I'm at risk of hernia, also the fatigue and low blood pressure can come from nowhere, so taking it very slowly.  I'm feeling older than my 52 years and have just taken ill health retirement, still awaiting paperwork to complete this long drawn out process.  Scan result update to follow when I get it. Fingers crossed for a of us. Xx ... View more