Glad you all seem to be coping well on this chemo. Gingerbud, have a great holiday - and I hope your hair stays on your head!
Francescap, I too hated wigs and scarves but the price of the hair replacement!!! I know we’re worth it but I honestly couldn’t justify it - and I don’t know that I could be bothered. I was determined to go commando this time round but I’m losing my nerve a bit. I’ve got an almost 14-year old granddaughter and I know they’re very sensitive about things at that age, so I’ll probs wear a hat or scarf when I see her. Also, I’m meeting an 89-year old uncle next week and he’s got more hair than me! I’ve got an appointment with Headstart at my hospital tomorrow morning to try on hats and get ideas for tying scarves.
I started cycle 3 yesterday. Onc is very pleased with how I’m doing … but he did say I’m the only lady he knows on this chemo who has lost her hair. Well, I’ve still got some and I’m waiting to see if it goes the way of the rest of it. I’ll let you know. I haven’t taken the steroids again and don’t feel any the worse for it. I also mentioned that I’d read Erubilin can affect the heart. As I have a heart condition, Onc sent me for an ECG yesterday. It came back clear, with no sign of my atrial fibrillation!! I’m not saying the chemo has helped it, as this condition is an erratic hearbeat and it could just be that yesterday I was calm and collected.
What about treatment times at your hospital? Any long delays? Yesterday, my bloods were at 1pm, Onc at 2:30, chemo 5:30. With the chemo suite always being behind, I got seen at turned 8pm, home by 9. I was shattered! Seemingly, once the Onc gets clearance about the bloods, he phones through to have chemo taken “off-hold”, it’s made up offsite then couriered to hospital. This all takes 3 hours. By the time I got seen, delays at chemo suite were 2.5 hours
Like I said Grannyscouse, it’s not for everyone. Personally I can justify anything that makes me feel better, especially the second time round. I’m on 5th line chemo now, I doubt I’ll be needing to save for my retirement at this rate and I (sadly) have no children to support so it’s all about me
Just about to join you ladies on Eribulin, Tax hasn’t worked which is obviously a shame but I’m secretly glad I don’t have to have any more of that horrid drug!
Hello ladies
grannyscouse- glad to hear ur coping well with the treatment Any scans planned? Sorry to hear ur hairs pretty much gone. Mine is thinning gradually+ I’m hoping it sticks around until the end of cycle 3 when I’m scanned yet again! X
Francesca- so sorry to hear the tax hasn’t worked. That’s crap news BUT fab news about the holiday to Thailand!! Have a brilliant time X
tillycat- hopeyou are doing ok x
It’s my 2yr cancer anniversary today. So glad to still be here + feeling ok. Hoping for lots more quality time with my family…
Love to all xx
Chemoqueen, how very rude i am am, i haven’t said welcome to this thread. I hope that you are doing ok and Eribulin is treating you kindly
I was waiting for the results of my most recent blood tests before posting again, despite what my oncologist says i like to have few numbers to show me that things are getting better. A scan would be nice but he seems to think i should wait until i have 6 cycles before i do that (i have just finished cycle 4)
Anyway Tumour markers are going down - I know they don’t mean a lot but trends can be indicators for some people and they generally seem to be so for me. Probably more important all my liver funtion tests are improving each cycle and, although i don’t feel confident saying it because my mood changes from day to day, i do think i am feeling better.
Went out to a dinner party on Sat and didn’t leave til gone midnight, took my very tipsy husband home and tucked him up in bed! that hasn’t happened for many months, usually we have to leave by 9 cos i am falling asleep and my hubby doesn’t have a drink because he lives in fear of having to drive me to A&E. bit of a result all round I think
I got a very nice wig last week from Trendco in London. I chose a human hair one (it cost me about £270) then had it cut quite short by my hairdresser. My daughters both say they love it and i have to say that i find it much more comfortable/less hot than the synthetic ones i tried, and failed, to wear last time when i had tax. Think i may change my picture to one of me wearing it -watch this space
i even got chatted up in starbucks while i was waiting for a friend (and wearing my new wig to show it off to her). He was about 75 and probably sufferring from dementia- but who am i to be choosy!!
mx
Hope you’re all doing well. Gingerbud, hope your holiday went well and you’ve come back refreshed and ready to continue the fight the good fight.
I finished cycle 3 last week. The same day, started with a stinking cold. Felt not too bad the following day, then voice went. I was in bed for 6 days!!! Absolutely no energy. I’m not sure if this was partly due to the cold weather (at least I was warm in bed and saved on heating costs!) but here I am on my week off and haven’t any energy to enjoy myself. I’m just hoping stinking cold was due to the time of year and not the chemo.
The good news is I haven’t lost all my hair. I do tell myself any others that I now have bum-fluff but hey, better some than none.
Any road up, hopefully I’ll enjoy the Folk Awards at the Lowry Centre tomorrow if I get there.
Enjoy whatever treats you have in store for yourselves …
Hello ladies
Just bumping our thread up to say hi + to see how you all are. Hope everyone is feeling as well as can be + eribulin is working wonders for you all! Anyone had any scans/ feedback recently? I’ve got my mid-treatment scan in the next frtnight + I’m really nervous if I’m honest. Breathing defo no better + cough probably worse than when I started. Nodes still prominent + various worrying aches and pains Cant help but think my bones gablve now joined in the party as I’m popping painkillers by the min + it’s just not like me. I’m having alot of pain in right side so I’m v.worried about my liver bt I’m hoping Its my ribs (comes to something when you are actually ‘hoping’ for a bone mets dx!). Apparently my bloods aren’t indicating any decline in liver function so I’m praying the liver mets haven’t progressed.
Sorry if I sound a bit gloomy but it’s anxious times as I’m sure u ladies understand.
Looking forward to hearing how you all are
tina xx
Hi all
Well just read gingerbuds post and it is really similar to how I have been feeling
Maybe it is how eribulin works ? Oh I do hope so!!
I have been getting lots of bone pain, feel very short of breath and now have a cough (which I didn’t before) my liver function gets better then worse, then better again - no one seems to be willing to commit to whether it is working, my onc keeps saying that I have to decide how I feel and if it is affecting my quality of life too much then I should stop.
I have asked for a ct scan and he has agreed. I really think that I need to have a bit of information before I start making decisions regarding my treatment plan (I would also quite like to have a medical degree and a bit more experience in oncology but he doesn’t seem to be offering me that!)
Mx
Just about to start Day 8 of C4 tomorrow. Got over stinking cold (and cough, thanks to Codeine Linctus). Didn’t think cough was connected to chemo but on the other hand …
Fatigue is my biggest problem. I’m just glad I don’t have youngsters to take care of like a few of you have. I don’t know how I’d cope otherwise.
Oh, and I’ve had some bone pain in upper and lower legs. Not joints, just the bones. Anyone else had similar?
Seemingly I’m having scan after C6. Let us know how you get on.
Chemo didn’t happen on the Tuesday. Suite was so behind that they asked if I could go back on the Wednesday which suited me because I was so exhausted on the Tuesday that I couldn’t face waiting around for at least 5 hours after I’d seen the onc.
Was up most of last night with a hacking cough. Ended up trying to sleep sitting up. Oh, and weak bladder. Had to change the sheets in the middle of the night!!!
I decided to go back on the steroids this time to see if I have a bit more energy. Not happened yet as I’ve been in bed all day because I just felt I wanted the comfort and security of my own bed. I got up a few times to brew up etc but didn’t actually come downstairs until it went dark and I could shut the world out!!!
My voice comes and goes. I don’t know if this is a throwback from when I had a cold and cough a couple of weeks ago, or whether it’s the chemo. But it’s developed a kind of squeak to it.
So, to sum up: pain in bones (not joints), cough resulting in weak bladder, squeaky voice, plus more fatigue. Sorry not to be more positive but want to tell it how it is so that some of you may relate to some of my symptoms.
Hi grannyscouse
sorry to hear ur struggling a bit with the eribulin Is not easy Is it? This is just a quick post to let u know I’m having similar symptoms. I’m bloody shattered, no energy for anything. Whenever I do anything minor like showering, putting washing away, I get really breathless + worn out. My cough also results in ‘tena lady moments’, as I like to call them. I have to cough with such force to get at the tickle/ wheeze, that my bladder really doesn’t stand a chance! I’m still having the scary irregular heart symptom, not to mention the suspected mini stroke I had after Tuesdays chemo…
I’m having full scans on tues- including bone scan + brain ct scan. Pretty anxious about them coz feeling quite rubbish so expecting bad news. Hope I’m wrong. Feeling low at the mo too, struggling a bit but I guess that’s to be expected given the shitty hand I’ve been dealt.
Fingers crossed 4us all
love tina xx
Hi Ladies, Am sorry that have not been on this site for a while now, in part it was cos things just got a bit too much dealing with continuous negative news from Onc. Anyway, just to let you know that am on Eribulin and just had C6 started today. I have had a very rough time with it and unfortunately my Onc is not sure if it is working as markers are going up, which he also thinks it may be due to him reducing the dose on the last cycle. I wish us all the best. Have a greatevening
Hi ladies
I got the results of my ct scan this week and it seems that the eribulin is doing something.
The lung mets look stable, liver mets are stable/ possibly shrinking, bone mets appear to be healing.
MRI scan last week showed brain mets are healing with no new ones apparent. (phew, I forget how many places it’s in til I list it like that - I’m riddled with it!!!)
Anyway onc says bone pain is probably doe to healing so it’s a ‘good pain’ - like childbirth according to the Macmillan nurse - hmmm :-S
Chest pains and shortness of breath are side effects of chemo. He has suggested I do 1 more cycle ie do cycle number 6, and then stop. He has upped my steroids to help with se’s and put me on slow release morphine patches to help with bone pain.
I feel SO tired and yuck that I struggled to be pleased about the results, I had pretty much decided to say that I would stop the chemo, at least for a bit, because I wasn’t sure I could cope, then I was told that I really should carry on
All my family are delighted and I am acting like a grumpy old woman. I think part of me felt like ‘so this is the best it gets now? This is good news? ’ I want the good news to be ’ it’s amazing, it’s all gone you are now NED’
Anyway enough moaning, especially when I look at what tina is being so brave about at the moment. I’m off to have a cup of tea and get my self psyched up for chemo tomorrow. 10 down only 2 to go :-))
Love and cyber hugs to you all
Melissaxx
Ps
Please post so I know how you’re all doing
Tillycat that is great news i know u feel u want more but one step at a time look what you have been through and your body your gona feel rubbish i know tina will be so pleased for you and it gives her loads of encouragement at what you can achieve gd luck with rest of chemo nearly there love Laura
It han’t been going too well for her recently. Eribulin doesn’t seem to have been effective. I think she has had spread to bone, ovaries and brain. I’m sure she wouldn’t mind me letting you know
Mx
Tillycat, stay with it if you can as it appears it’s doing its job for you
Me? Well, I should have started cycle 5 yesterday but the onc has given me a 6-week break. I’ve been feeling pretty rough these past few weeks and don’t know whether it’s from the cold I had at the end of Jan which appears to be lingering, or whether it’s the chemo. I do know that the neuropathy in my feet (left over from Tax in 2007) has spread to above my knees now. Some days it’s been difficult to walk. Onc said that’s no good so not to go ahead with chemo yesterday and he’s arranging for me to have a scan to see if it’s been working. If it has, then I’ll be able to go back on it in 6 weeks.
I can’t say I’m sorry not to carry on with it at this time as it’ll be nice to be able to plan things over the next few weeks.
Grannyscouse that’s intreasting I’ve a bad knee that as only just started playing up can hardly walk get up stairs bla bla I had tax in 09 then I had placitaxol in may this yr but I also got rhumatoid so I think they are unsure wat the pain relates to my toes are numb on both feet and my knee as only been bad for 2 wks mainly around the back bottom of leg aches a bit wat symptoms do u get I’ve not mentioned it to onc didn’t think be any point as they can’t do much many thanks Laura
My neuropathy started in 2007 with Taxotere. It stayed in my feet and ankles. Then when I started on Eribulin it gradually crept up my legs. I didn’t mention it to onc initially as, like most of us, I don’t mention everything. But eventually I did because to be quite honest I was feeling quite pooey for quite a few weeks. So I decided to tell him everything. He was quite shocked, I think. Said he hadn’t come across the neuropathy thing, even said a few seeks ago he hadn’t come across hair loss. Given all my symptoms, he’s had to do something.
At the mo, I still feel not too good but am looking forward to better times in the weeks ahead.
Hi Ladies, have been reading recent comments on Eribulin. Have to say my experience not as good as expected. S/E’s have been too good to be true. Hair thinning but not too bad. No sickness. Energy levels not too bad. No Ulcers tingling toes or fingers. In fact I have told people “Its not like having Chemo at all” I should know as this is my 6th type of Chemo. Only one problem - after 6 cycles it has stopped working. Lots of new nodules breaking out all over chest/neck & back area. Very tired & feeling down about results. Onc said have a couple of weeks break & come back 12th Mar & talk about where we go from here.
Sorry to sound so negative.
Hi ladies
I’m so sorry to hear that the eribulin doesn’t seem to be working for you chemoqueen. I hope that your onc has a plan when you go back to see him
Grannyscouse- hope your SE’s start to clear up soon now you are having a break.
I’ve just finished cycle 6 today. 2 weeks off then I’m seeing my onc. In fact I am seeing him 2days before my 50th bday so I hope he is feeling reasonably positive and doesn’t send me off feeling all depressed. I think I have a good reason to celebrate - as I wasn’t at all sure I would get to see 50 (I was told 3months when they found brain mets last may)
Hope everyone has a nice relaxing, pain free weekend
Melissax
Any scans planned? Sorry to hear ur hairs pretty much gone. Mine is thinning gradually+ I’m hoping it sticks around until the end of cycle 3 when I’m scanned yet again! X