18-11-2016 12:03 AM - edited 18-11-2016 12:10 AM
Marmster, sorry about your hair, yes mine has gone a bit walkabout! I do hope your sickness improves.
re HAIR. try washing rarely! Use simple shampoo and conditioer, rinse off under the shower and pat dry. No hairdryer or rubbing, just blotting....thats what I did, and it worked for a while.
17-11-2016 11:59 PM
Marnster.....just to say that my onc said this week that, breaks of more than 6 weeks on Eribulin would mean that they arent allowed to put us back on it again! Im sure the odd week is fine....am not sure wether they mean a six week break, or more han six weeks in total, ever!
it must be the jolly old government again, not the drugs fund admin which make these rules!!
glad you are feeling well on it. Met a lady this week who said she gets sickness, such a shame.
hi Sharon, how are you doing now you are off this drug.? How is your tummy?
17-11-2016 01:55 PM
Hi Moijan. I am feeling ok at the moment. I'm currently having a bit of a holiday so I was meant to start round 2 on Wednesday just gone, but I will start next week instead. Feel a bit tired but that could be a) because of the current chemo, b) because of last year's chemo, c) because of the radiation earlier this year or d) all of the above. My hair began to fall out on Sunday but it's no noticeable to look at. It is falling out pretty slowly though it seems to be accelerating as the week goes on. But nowhere near as fast as when I was on the AC combo last year. Am hoping to get some news on my numbers when I see my doctor next week, but don't expect there will be much change after first round. My white blood cell count has been ok so far.
17-11-2016 12:54 AM
Downbutnot out, was sorry to read about your skin mets as well, I do hope those arent painful?, what a shame erib wasnt as useful for you?
I have been on it since the end of June, and Marnster, you asked how many cycles, I think im on number 8, which would mean about 24 weeks ive been on it!
i havent felt sick...its weird that it affects us all differently..was it you who mentioned low white cells? Can you get filgrastim? I thnk thats why im doing so well, my white cells are very high, in fact the onc said that if they got too high theyd have to reduce it! Ithink i was very worried about getting nutrapenia and so the onc put me on it,luckily.
17-11-2016 12:45 AM
Hi Downbutnot out and Marnster,
sorry for my absence from this thread.
yes Marnster, my tms are now down to 99! Its really amazing...they were over 1000 in June..but we all know that the path has twists and turns for evryone...so I just need to keep my eye on the ball!
i hear that due to the change in the rules, there will be more Eribuliners soon...so am looking forward to hearing how everyone gets on.
how are you ferling Marnster?
09-11-2016 01:36 AM
Hi Moijan! You are seeing great results! That's excellent news. I probably won't have a scan until after Christmas to see if things are improving. That will give me a few rounds under my belt.
I've been a bit disappointed to find I have been a bit affected by Eribulin. I wasn't sick at all on my chemo last year and was really lucky to have pretty mild side effects. However, I've felt quite queasy and had no appetite so far with Eribulin. I was really confident it wouldn't affect me at all! I also had a really sensitive and sore scalp over the weekend so I was wondering if that might be a precursor to my hair starting to fall out. But so far it's still there. Poor hair has only been growing back for less than 12 months.
How many rounds of Eribulin have you had so far?
09-11-2016 01:15 AM - edited 09-11-2016 01:16 AM
have just seen our post..sorryfor late reply. I have found Erib o be nothing short of miraculous so far, tms were over 1000 in June and now round the 130 mark. Last mri showed a tumour refuction so am hopeful for more improvement. How are you ferling on it? Have had very few side effects.
05-11-2016 04:56 AM
Hi Mojian - I've just finished my first round of Erubilin. So I'm happy to be your buddy! I was just diagnosed at the start of October with secondary mets in my lung. Just the one. I had a CT scan at the start of September and there was a 1cm growth on my lung, but I also had a cold at the time so doctors couldn't be sure if it was cold related or a met. Second CT scan confirmed it had grown to 1.6cm. The primary is also growing back on my chest wall and one of my mammary nodes appears to be involved.
i was on six rounds of Capecitabine before I had the scan in September. The Capecitabine was a precautionary measure to try to stop the cancer recurring or spreading, but unfortunately the lung met and chest wall must have developed while I was on it. So it's not an option for treatment. The mammary node was picked up when they were doing my radiation planning in January. So they nuked it with radiation while they were nuking the rest of me. The September scan showed it had shrunk following the treatment but it had grown again by the October scan.
I was was diagnosed with triple negative breast cancer in my breast and lymph node in June 2015. I had neoadjuvant chemo with four rounds of AC and 12 rounds of Taxol. Then I had a mastectomy and axilla clearance - 34 lymph nodes removed but only one tested positive. Pathology report showed the tumour was pretty resistant to the chemo. Then I had radiation, though there were some delays getting started because of some infections.
I knew there was an increased chance of recurrence or secondaries, but I didn't think it would happen so soon. Was hoping I might get a couple of years not having to go to constant appointments and treatments.
How are you going?
29-10-2016 10:57 PM
Apparently three years mets.
had cape for two, letro for a month( had it for over 7 years pre mets but told i could stop it and the bc came back! ) was resistant, the Vinorelbine for 6 months, now Erib for 4 months.
was diag with Oes + herz -, lobular bc, how about you? Primary diagnosis in 2001.
29-10-2016 10:31 PM
At the moment I'm on Gem Carbo, which I've had previously but I'm only having the day 1s because of the low neuts. I've also had some immunotherapy treatment in Germany this year but it was very expensive and I don't have enough to keep up with the top up treatments. I think it's working on my skin mets but it hasn't fettled my nodes and the original recurrence site has been growing as well. The Gem Carbo seems to be controlling it. Other than that I feel well enough, just low on haemoglobin at present. I'd like to see if I can get onto a clinical trial but it's finding the right one, at the right time, and meeting the eligibility criteria.
If you're on Eribulin you must have had some other chemos previously. How long have you been metastatic?
29-10-2016 07:46 PM
Hi downbutnot out, thank you. What are you on now? My tms fell by 900 points in four months...
its is lovly to hear from you...how are things?
29-10-2016 01:50 PM
I'm one of the 'skinny' ladies but haven't been posting much lately. I'm not on Eribulin now but was on it for 7 months. I had no side effects from it and other than all the hospital appointments my life felt almost normal. I had some progression after that and so I was taken off it but I feel that the progression could have been more because I ended up on such a low dose because of low neutrophils (every chemo affects my neuts badly) rather than it having stopped working.
I hope you get a good, successful run with it.
28-10-2016 12:32 AM - edited 04-01-2017 09:01 AM
Have been on Eribulin since end of June 2016. Did have two chemo buddies, but they recently went off it.
if you are on Eribulin, or have had a course of it, I would love to hear how things went.