04-11-2018 08:25 PM
03-11-2018 05:52 PM
31-10-2018 01:14 PM
Hope all went well with your first Eribulin. I was in for my 4th round yesterday & scan results which showed stable. Stable is good. I hope you get on ok with it & the cold cap (if they let you use it) Jen xx
31-10-2018 01:09 PM
30-10-2018 12:48 PM
I am now 66 & was diagnosed with Stage IV Breast Cancer in 2012. It has spread to several areas of my bones, spine, ribs, thorax, & pelvic. I've been on Eribulin, (Havelin), since February, 2018 after trying all other meds that were being used like Taxotere, Arimidex, & even the Red Devil along with several others, all of which were not effective. My last pet scan was done in September, 2018. This is the first time that I showed no activity & the cancer area in my breast has decreased in size. At this point I don't know if I will ever be able to stop the chemo treatments but as long as I continue like this, I am a happy camper.
23-10-2018 11:40 AM
23-10-2018 10:40 AM
23-10-2018 07:55 AM
Hi ladies, especially the newbies to this thread.
I had Eribulin last year and decided to use the cold cap as I had chatted with another lady for who it worked well and she didn’t lose her hair. I really wish I hadn’t bothered. It extended the treatment time massively and I think the reason you have been told you can’t use it is because of that fact rather than for any other reason. There’s no proof it works as far as I can make out, it’s definitely pot luck whereas other chemos it does seem to work well as long as the cap fit snuggly all over. For most ladies the hair loss is between the 1st and 2nd dose of the first cycle and after that it doesn’t get any worse and actually starts growing back. Mine thinned hugely, by about 50-75% maybe, but as I had thick hair to start it was only really noticeable to me. I wore wide, soft hair and, from Claire’s, and had a variety of covers. It’s the only chemo that has made my eyelashes and eyebrows go completely, which didn’t happen with FEC or Taxotere, they really were the things I missed the most. If you do choose to use the cold cap near in mind the Eribulin infusion can be given in as little as 5 minutes once it’s established you don’t react to it, adding the cold cap makes the whole time in the chemo unit around 3 hours. Also you can decide if you want steroids or not, they are not necessary although some units insist on them. I really couldn’t have coped with all those sleepless. Nights so I decided not to have them and i didn’t have any more side effects than others who were on the same treatment. Hope this helps.
23-10-2018 04:04 AM
Hi C A S
So wanted to keep my “crowning glory” back in 2007 so I used the Cold Cap.
After about 3 weeks I started to lose some tufts at the crown, and as there was the
possibility of burning my scalp and hair follicles I had to stop using the cap. My hair
might not have grown back in at all in that area. Did not fancy the tonsure look.
I ended up wearing wigs, but however “great” and “real” your nearest and dearest might
tell you they look, they’re not you (if you know what I mean). We’re already putting a
face on.My son was 14 first time around. Being seen with your Mum is a NoNo anyway
at that age, but with no/chemo effect hair???!!!
This time round, got a wig. It’s a really good wig. Don’t use it. Threw caution to the wind
and let the chemo (Paclitaxel then Eribulin) do its worst (as far as my hair was concerned)
and hopefully its best to stabilise my cancer. Fortunately my stubby “silvery haze” fits right
in with the new colour trends.
We have enough to put up with. Losing your hair IS hard. In my experience, it comes back.
I seem to remember it was blond before it disappeared though Must be the drugs.
I remember how unpleasant and time-consuming the Cold Cap process was and have
to say that I admire your strength in wanting to continue to use it with everything
else you have to contend with.
All the Best to you and yours
22-10-2018 06:32 PM
17-10-2018 05:46 AM
ah, Helen. . .
Moijan was an inspiration to us when we were Eribulin newbies, and always there with an answer when we stuggled.
I felt she had gone when she stopped answering PMs.
Wishing everyone a safe journey with their treatments,
with love xx
08-10-2018 08:14 AM
So sorry to hear about Moijan but grateful for the update. I've found this thread, and others specific to treatments, to be tremendously helpful as they relate to specific treatments and how we are each doing on them.
It's wonderful to know others, like Helen, have done so well on Eribulin, which reminds me why I was optimistic about it. Unfortunately for me, after the 2nd cycle my cancer was no longer impacted by Eribulin and my LFTs shot up putting me close to liver failure. Not sure "what's next" for me, but whatever it is it's a great help knowing there's likely another thread out there to follow.
08-10-2018 08:02 AM
07-09-2018 03:54 PM
sorry to hear about your SEs.
Pain in right upper quandrant? Is that shoulder boob ribs chest area? If so, I have had crippling pain there in the evenings and it turned out to be indegestion/heartburn...the pain was agony, also across my back.
I found peppermint tea shifted it as quickly as any prescribed meds.
06-09-2018 02:06 PM
I'm so glad to be hearing good news about no further spread from so many!
I have one more cycle before CT scan (it will be more first scan since starting Eribulin) I wish I could say I'm optimistic, but tumor markers came down and went back up, I developed a mysterious rash on my left upper arm last week (it came and went within a few days but looked very angry), I have a bloated feeling and some swelling in my lower legs, and worst of all the pain has returned to my right upper quadrant. It mainly comes on in the evening.
I have an oncology appt next week, so will discuss all this with MD. Part of me is hoping she'll say lets do the scan early, just because I'm curious. We haven't talked about "what's next" if Eribulin doesn't work and hopefully won't need to.....
Hanging in there,