Nicola you are better private messaging your phone number as this is a public forum anyone can access your phone number and use it .You can edit your post by clicking on the three dots top right hand corner .
Let me know if you want to join our Eribulin Whatsapp Group. Good luck for yours.
Yes I also have been experiencing oral issues.
And using mouthwash. Really conscious of breath, so far no issues there.
Otherwise I am ok.
Best of luck everyone.
How is it going? I am through three treatments. Starting to take its toll. My mouth is really battling. Use lots of mouth wash.
Word of advice, use your mouth wash. I find the mouth is the worst affected. My tongue is really battling.
I’ve had half a cycle at full dose then a second cycle reduced, but with the day 8 dose delayed a week. Bloods permitting, cycle three next week.
To be honest, it’s the hardest of the treatments I’ve had so far for secondary cancer, but not as bad as FEC for primary.
I’m mainly suffering with digestive issues, although to be fair the reason I started the treatment is because of spread to the lining of my abdomen so there is an overlap between cancer symptoms and treatment side effects. Plus I suffer from nausea badly with any treatment. This drug has a delayed nausea impact, but I think almost there on the right combination of drugs to combat.
Positives are no hair loss with the cold cap and the abdominal cramps have reduced significantly.
hope this is ok to post, i'm not used to forums and don't really know how they work. about to start eribulin next week and low-key bricking it? i don't have the greatest track record with chemotherapy; had issues with neuropathy, fatigue, and neutropenia, and even the teensiest amount of xeloda almost entirely destroyed my immune system & made it impossible to do nearly anything with how fatigued i was. i'm optimistic by nature, but i'm scared.
Not enough neutrophils (type of white blood cell) to be safe for treatment. My bone marrow is very wimpy so seems to be hit quite hard by all the different chemos I’ve had. Not too far off the cut off this time so hopefully treatment next week.
If you add me as a contact you need to send me a message to say hi. Then I can respond. What is Neutropenic?
Neutropenic again, so day 8 treatment delayed to next week which is frustrating.
I think I’ve added you to WhatsApp but who knows with chemo brain.
Yes, all ok here, thanks for asking. Had 2cycles so far.
And its been ok
Not too troubled with nausea, in fact I managed to eat my way through Xmas very successfully.
My go to remedies are: soda water, ginger ale, pineapple, natural yoghurt and fennel tea.
Mid way through cycle 2 here. Ok to join chemo buddy team?
Nausea better controlled this time but now at the yucky mouth everything tastes horrible stage.
Hi Gina, did you get my message? How you feeling ? I survived cycle 2 and I am on my one week break.
Hi Chemo Buddy,
How are things with you, my second treatment started my hair falling out. How you feeling? I have been battling with the tiredness and my stomach over Christmas, if I eat anything different.
Hi Chemo Buddy calling for duty. I am having treatment in Chelmsford at Broomfield Hospital. Started Eribulin two weeks ago.
Hi everyone. Just started Erbulin today.
Are there any newbies like myself, who have recently started this regime.
Sorry to ask what changes did you have mine seems to look more swelled but smaller very soft and sometimes a little red but no pain xx that is good news for you x
Got on fine. Ct scan shows that chemo seems to be working. No real change to tumour in my chest and tumour in liver has shrunk. So we're keeping going with eribulin for now.
That's good news, the changes in the bump show that chemo is working. I've had a couple of ports fitted, and it can be horrible. My first one was the worst.
No it Sean's to look worse after cemo then settles spoke to cancer research and breast cancer care they seem to think it's the cemo killing it they were saying a lot of woman have rang same thing and today looks more settled they have told me to stop prodding it Haha one good thing feel so well only thing having a port put in was a nightmare Monday
I know, I'm the same. Every change, you can't help thinking the worst. Has anyone looked at the bump on you're chest since it's been worse?
This is my ct scan results day - so worried. You can't help but worry.
It’s a pain asid reflux all chest hurts a horrible taste which don’t help as my taste buds are suffering panic sets in the bump on chest look bruised since I started on cemo it now feels soft so worried
I suffer a lot from acid reflux too. Not back on eribulin yet. My consultant wanted to see ct scan results first. So should know on tues when i get these results. A waiting game just now which isn't great.
Yeh I feel fine on erublin not many side affects feel tired after cemo so just rest all day feel much better day after did you go bk on it after your mouth was better I suffer with a lot of acid reflux
Hi Vicky, sorry to hear this. Hope eribulin is working for you. I have triple negative bc too. I have mets in my chest and liver. Chemo was stopped half-way through 3rd cycle due to sore mouth/throat. Had a ct scan yesterday to see if eribulin is working. Hoping to get my results on tues.
Hi new to this my name is Vicky triple negative now got small lung met and lump on chest wall been on erublin just started 4th cycle notice lump sometimes feels smaller but looks like it’s bruised as if it’s burning away worried and just hope it working early to expect to much
Hi I have small let on lung and lump on chest some timesfeel bigger but gone like a bruise no pain just started 4th cycle so early days I suppose erubilin just worried
It looks like Eribulin may have caused a rash all over my body. Is anyone else had a skin reaction while on Eribulin?
been a bad year to add to lung mets bone mets last october Docotaxel didnt work at alland spread to liver and abdomen. Just had Kadcyla for 6 months which worked initially but now spread to bowel and have ascites has shown up on the scan which explains the pain I have had. They have said with treatment 12 months maximum hence my dilemour I dont want to be really ill for that time and I was so ill on docotaxel ended up neutropenic every cycle and had to stop early..
As all of us just want to enjoy what I have covid permitting
thank you for replying that helps a lot. I will see what they say to day but thinking of trying the tablets 1st. I thought I would lose my hair again (its just grown back}
will let you know
I'm so sorry to hear of your prognosis and I'm thinking of you x
I am currently on Eribulin, but I'm afraid I don't know anything about Vinorelbine, so can only give you my experience of the first.
A plus side of Eribulin is that it only takes a short time to administer, about 10 minutes, so in theory with a flush before and after, you are only in 'the chair' for about 30 minutes. I have to take 4 steroid tablets just beforehand, but don't need anymore and the only meds I bring home are anti-sickness-so far I've been fortunate and haven't been sick. (Although I do wear travel sickness bands on chemo day and for a few days afterwards, so I don't if they're making a difference)
I find on chemo day (mine was yesterday) I feel a bit weary afterwards, but then can't always sleep because of the steroids! Then today and tomorrow, I'm fine pottering indoors, but not got a lot of energy (although last Wednesday I did go out for a while and felt fine) and then by Thursday I'm feeling more like myself, but I do feel fatigued quite easily. I'm 61, so that might make a differnce!
A positive of this chemo is that it's two weeks on, one off and I've found that's helped me physiologically.
I have got some peripheral neuropathy in my toes and fingers, but I don't think this chemo has made it any worse as it never completely went from when I had chemo in 2017. I find my mouth gets dry for the first few days after chemo. On a plus side, my hair is growing back, I thought losing it was a side effect!
I'm having a scan sometime this week and will get the results next week when I see my oncologist, so I don't really know how it's working yet-I've had a return of the breast cancer plus a 'nibble' in my sternum and a few lung mets. On the surface though since starting Erubilin I can see a huge difference in my breast, (mine is external) the lumps look like they're dying and have decreased in size. I'm no longer in pain, just a bit of discomfort sometimes-I was taking over the counter medication previously. Yesterday was the second of my 3rd cycle, but I saw and felt a difference by the second part of my 1st cycle. This might not be purely due to the chemo though as I had four sessions of radiotherapy just before I started it.
Btw, I did get a second opinion at Guys (my consultant at the hospital was happy for me to do so and actually recommended the consultant to me) and it was him that suggested Erubilin and the radiotherapy, which my hospital had said no to! So, don't know if that is another avenue for you to possibly consider?
Sorry to have rambled on, but hope it's of some help to you, Jencat x
just been given option of erubilin or vinorelbine not sure which way to jump. I have been told maximum life expectancy currently with amount of progression 12 months so just wondered which one would be kinder.
I started Eibulin yesterday. Just a bit tired today. I have undergone quite a few chemos now for the metastatic disease. I have had oral Xeloda, AC, GemCarbo, Abraxane and now this one. I had no side effects with the Gem or Abraxane so praying this one is the same. How are you going?
I was on Eribulin twice, once in 2017 (I think that was the year!) for 8 cycles then again in 2019 as I was aware that it could be used twice especially if the first time it had not shown itself to be ineffective. For both courses of the chemo I had to have gcsf injections as my wbc and neutrophils were too low to enable me to have the chemo in Day 8. I know not everyone needs them but it could be that I did because of the number of chemo regimes I’d had and my bone marrow not working as efficiently as it should. I had no problem administering them myself and it didn’t cause me any problems but did keep my blood counts high enough to allow me to have future cycles on time.
As to meeting others I think with a low blood count you do have to be cautious although I have met my immediate family (daughters and son in law) whilst on chemo but have kept my distance. I don’t go into shops and generally abide by the guidelines for the extremely vulnerable group but do get out for a walk most days as I am unlikely to come within 2 metres of anyone if I’m out and about. I think I would have gone quite stir crazy if I’d stuck to the guidelines of not even venturing out of the front door for all these weeks!
I am new to the forum but I really appreciate you sharing, Ramade, and I pray you are comfortable in these weeks and have special times with loved ones.
I am on Eribulin but have just had it delayed for a week due to low neutrophils. I am not sure if my oncologist will use those injections. They haven't been mentioned and she is reluctant to make me endure too much treatment as I am getting to the end of the benefit of treatment too. It all feels quite uncertain but also peaceful. I am so exhausted from treatment. It has been five years for me so far. But I would like to go for as long as possible for my daughters and husband.
I have a couple of questions - did anyone else have the injections? And also, is anyone making any changes in terms of seeing people these days? I am shielding but I am thinking of changing that if my treatment ends.
Thanks so much, bless you all,
Hallo Ramade, I've only just read your post and wanted to say thank you for being brave enough to post about your future decisions. It can't have been easy but is very helpful to me. I think we are some of the oldies on this forum! I have paclitaxel still as an option but don't feel I can take any more IV chemo, it also doesn't seem to work for me anyway.
I've had a looong dance with cancer, primary diagnosis 25 years ago, local recurrences 11 years ago and secondaries 7 years ago. I have only mentioned this so that the many newly diagnosed can know that you can live well with secondaries for a long time.
If you feel able to reply, do you have any family members as carers? Do PM if it's easier. Sending you hugs and peaceful days xxxx
these are all things I would like to know about..and to hear about, thank you. I don’t know what questions to ask, except about pain and the balance between pain and having a clear head. I suppose my other big concern is about family, how everyone copes.