Bad scan results today...my faslodex not working and I have more progression in my liver and new spots in pancreas and adrenal gland also in pleura...in fact everywhere...I knew that I wasn’t getting any better because of how I felt
Anyway I’m going to go against everything I’ve said on here and go the chemo route
FEC is the name of the drug my oncologist wants me to have...she said I can have another opinion but they would just advise the same protocol so I don’t see any point
Have any of you ladies tried this drug and how awful were side effects?
I’m totally upset...the orbital met which is causing my double vision has remained the same so radiotherapy didn’t help
Barb xx
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Thanks for posting an update. I have been thinking about you. I haven't heard of that particular chemotherapy, but I would say go for it if that is what your oncologist feels would work for you. Do you have time to think about it or are you planning to start treatment soon? Hopefully someone else will chime in who has experience of this drug and can advise you about what to expect.
Take care,
Sophie
Hi Barb
Sorry to read your update, however it is good that chemo is another route for you to try. I had FEC in 2015 with my primary, had 3 rounds and then 3 rounds of taxotere (docetaxel). I wont sugar coat it and say I found it easy but its certainly doable and my goodness, after 2 rounds of FEC you could feel my breast tumour had shrunk a fair bit so it does deliver results.
The side effects I experienced were fatigue, loss of taste, sore tongue, mouth ulcers, hair loss. I didn't have any nausea or upset stomach with it. I did manage to still go to work for 2 weeks inbetween chemos, I just took the first week off following the treatment.
I am sorry that you are going through this. I know that if my next option was IV chemo, I would take it.
Have the doctors mentioned Xeloda as an option for you? It is an oral Chemo. I am on the second cycle and it has been very tolerable. I get scans in a few weeks so we will see if it is working.
Yes. That is the plan with my oncologist. 6 months or so on Xeloda the oral Chemo pill. 14 days on 7 days off. Shrink the tumors, then on Tamoxifen for mantainence. Well, IV chemo will really attack the tumors.
She wanted me on chemo in May but I wanted to try faslodex...as didn’t want chemo...it worked but only for a short time so I regret my decision now as I’ve ended up on the chemo!!
I’m so sorry that you are facing yet more progression...
I hope and pray the FEC shrinks or stabilises things BUT you also have the best quality of life possible.
I wish you every success with your next treatment. You are a beautiful & brave lady.
None of us MBC ladies know what’s around the corner...
Jo xx
Ps my dear friend Anna, is now in hospital whilst they try and get her stage 4 lung cancer stable - she is in so much pain with a hip fracture and several spine lesions - allowed no visitors due to COVID - it’s so very cruel
Thank you for the update. I know you didn’t want to go the chemo route but as Sandra said hitting these new areas hard and then switching to something more gentle sounds reasonable. Please know that I am holding you close to my heart! Sending ♥️ and healing energy!
I’m so sorry you are dealing with this now. I am here to give you loving healing energy as I am right behind you on the ride. You are a trailblazer for us all and I wish you the very best outcome with the new meds.
Hi Barb, Just wrote a long reply and it has disappeared 😢. Anyway back in the day (10 or 11) years ago everyone was given FEC.for primary breast cancer. I remember it well and found it fine apart from constipation. Our older daughter was getting married in June that year and I managed to have a big bbq the night before the wedding for all the guests travelling over to Holland and still get up early the next morning to put up balloons at the reception venue. I feel you have nothing to fear as it is quite gentle. I wish you much success with it but there is always, Taxol or Abraxane (similar but more expensive), Xeloda etc. Our younger daughter was supposed to get married in Sept this year but because of COVID it has been put forward until April next year. Two daughters and cancer at both their weddings when they were born 13 years apart. What are the chances. Wishing you luck. Much love Ruth xx PS Today I had my second weekly IV Abraxane. Due to have a break in another 16 weeks, can’t wait 😀
Sorry Barb that you need to switch to the IV chemo route , but we would all do the same, when faced with this. I’m sure it won’t be easy , but keep strong and keep going ! How soon will the treatment start ? ... if you are up to it , get yourself a quality real hair wig so that you are well prepared . Will be thinking of you , much love 💓
Treatment should commence in two weeks...dreading it but will give it a go...good advice sorting a wig so I’m ready...any hints as to where to buy?...doubt shops will be open but maybe some online maybe
Your hospital where you will receive chemo usually do you a referral for a free wig on nhs. Your hair doesn't usually start to fall out until 12-14 days after first treatment. I got a free wig with primary diagnosis in 2015 and again when I started chemo in may. I'm pleased with mine as it looks natural and a few people that I know have asked if I am wearing one as they knew i was having chemo but couldn't figure out why i had my hair! I know that the styles and quality will vary from shop to shop, where i am the wig shop is around the corner from the hospital. Might be worth enquiring about first before buying.
Have you watched married at first sight Australia season 5? A lady on there has alopecia and wears a wig. I would never have guessed it looks amazing. I said to my husband that if I loose my hair in future treatments I would not worry after seeing what’s out there wig wise.
Simply wigs would be my nearest but are online too . In central Nottingham there is Rivelli Capelli wig studio , and Trendco . Both are currently open during covid ... maybe ring to get an appointment and take your daughter.
Also many hairdressers will often trim/cut a real hair wig to suit your style . x
I know how important our hair is to us ...you with your extensions and me with my highlights, and if I knew I was to lose it for a while , I would want to take control myself and have my head shaved (and wear a wig , or a soft head covering indoors ) rather than wait for it to fall out . And cold weather is coming , so nice soft light turbans too . There is lots of headwear online , like ‘Simply wigs’. x
I looked up Rivelli Capelli wig studio , which is in the centre of Nottingham , on Victoria street, and Michael (and his partner Iain) offer a one to one service and have a lot of experience with ladies undergoing chemo . Michael is also a trained hairdresser too and will trim any real hair wigs if needed. With covid restrictions they can only see one person at a time , but you can ask family for a second opinion on FaceTime etc .
I hope you can get any appointments very soon Barb , as I see Nottingham may go into tier 3 and hence more closures ( reviewed every 28 days) ...they have just started cancelling non -urgent appointments at the big university teaching hospital there . My area in West Yorkshire could follow soon too . Take care ! x
Rivelli Capelli are closed so I’ve ended up going to a lady in Hucknall who tries fits and orders the wigs...has a little salon in her house
I went today and picked out a few to try next week...she only does synthetic but I just want a long straight style with a fringe so I don’t need to use straightening irons...just bung it on!
I’m glad you have found someone local who fits them too , especially now that Nottingham look like they are going into tier 3 lockdown . I hope you get sorted soon . Where are you going for brows / microblading ? Have you ever had them done before ? Something I keep putting off as my brows are light and very fine now . Take care x
Glad you’re sorted near home . Just seeing on the news some parts of Nottingham going into tier 3 Wednesday. Take care ! x
Ohhhh, Barb! My gosh, what an update! I'm so, so sorry that the faslodex isn't working for you. Truly, truly sorry!
And I'm also sorry that the vision hasn't improved. I can only imagine how difficult that must be, something we mostly take for granted/rarely think about, i.e. the ability to see.
You've been having challenge after challenge...my heart goes out to you. But I'm glad you've decided to give IV chemo a try. I'm hoping...and hopeful...that it will be easier than you feared and, even more importantly, that it will really push things back! It seems that every week I'm reading something here about what a positive difference the IV chemo makes. It has certainly changed my own stance re: going that route when the time comes. These are the "big guns" in our arsenal...time to let them do their job!
You're in my thoughts, and my daughter and I are both sending our best positive energy your way...
Thanks for taking the time to update us. You know that so many of us care and wonder, and we know that when there's a lot going on, it's not always easy to update the group. I'm sure I'm not the only one who is grateful to know how you are, even though it is not what any of us would have hoped...
Oh Dear. I am so sorry to hear that things haven't worked, but like the others I am pleased you are going forward with the IV Chemo. It must be terrifying, but hopefully there is comfort in knowing you are taking a positive step.
Did they say whether it will help with the eye situation as well as the liver etc.?
Thank you for keeping us updated. I am sure you have so much on your plate, but all of us are thinking about, and rooting for, you.
So very sorry to hear this. You've been in the thoughts of so many!
I'm a bit surprised Xeloda was not recommended. It's an oral chemo that usually given as the first type of chemo once endocrine therapies don't work for hormone receptor positive patients. It tends to be quite effective, fairly well-tolerated, and prescribed in lieu of combination chemotherapies for HR+ MBC. Please get a second opinion!
I truly am crushed by your news. I am praying for you that your cancer relents and leaves you the heck alone! I hope this 5 FU appropriately named since it's directed toward our common enemy Cancer kicks the bejesus out of your tumors.
I think you are an amazing and strong person. You always seem so honest and direct about your suffering. In my mind I see you with Bugsy and your girls riding and laughing and enjoying the lovely English countryside with perfect vision. That is my prayer for you!
Barb I have been on the oral Xeloda since the end of July. Xeloda is the oral form of 5FU so it sounds like your doc really wants to pack a punch to your progression with the IV version with the additional 2 chemos. Sounds like a good and solid plan!
Sorry to hear about your progression Barb. I had fec-t for primary bc. It’s not the easiest combo, but as others have said, it’s doable. Have you already had capecitabine (oral Chemo) and Eribulin (very quick IV) Both of these drugs worked for me and are easier than fec. I just bought a human hair wig from mimo wigs and saved hundreds compared to anywhere else. Good luck. X
Sorry to hear about your progression. I was born in Scotland but have lived in the US since ‘74. I am signed up for the newsletter from Canceractive which is a British site. Chris Woolams has an interesting but sad story as his daughter suffered from cancer which led to the wonderful information in his site. He is a great believer in supplements and diet and has lots of information to help alleviate the side effects of chemo. You might have heard of him but I looked up chemo so here’s a link. I also recommend his books but It might be best to stay focused on how best to prepare for chemo.
I am a newbie to MBC. Know that we are all here to support you & cheer you on every step of the way. I never know from month to month what my labs will be/show. The lack of control over most everything is really hard for a control freak like me. You sound like a strong & wise woman! I commend you! Keep us posted when you can. I also agree with getting a wig picked out before you need it and have your stylist trim it up for you.
So sorry you are not feeling well and that things are not going as well as we all hoped. I had FEC chemo and you know what? It wasn’t that bad. I had heard some horror stories about it but I managed really well on it. It shrank my tumour from 11cms to 2cms after 8 rounds.I worked a full time job through it all and lived life as normal. I lost my hair and felt very tired at times but it was do-able. Go for it!
Dear Barb, I feel for you receiving news you don't want. So many on here have come up with good ideas and support. I send my two penny worth.....go for it Barb and clobber this b.... C. I sit here in my wig sending hugs and strength. Fayx
I too had FEC for my primary. I would have it on Friday, be wiped by the evening, stay in bed Saturday then start picking up on Sunday and good to go by Monday. I was looking after my kids age 5 and 8 then, doing school runs etc. By the end of it felt pretty tired but it kept the cancer in check for 12 years. Hated the hair loss but got a lot of compliments on my wig!
I know this isn’t a route you want to take but it is do able and manageable.
I haven’t had FEC but have a few friends who have. There are side effects and you will probably find that they vary through the cycle. I had TAC when I was first diagnosed. My friends had FEC on day one of a three week cycle, which was the same cycle as my TAC.
I found if I had chemo on a Tuesday I felt fine Wednesday, started to feel tired on Friday, side effects were worse on the Saturday and Sunday and then I started to feel better on the Monday or Tuesday. By day 10 I was feeling ok again. Of course it varies for everyone,
Try to stay active but listen to your body and don’t overdo it. Get on top of any nausea before it starts, so if you are given 3 days of anti-sickness pills take them even if you feel ok. They generally start you on the lowest dose of anti-sickness, don’t feel that you are being a nuisance by asking for something stronger or different. Different people get different results from different drugs and ask about mixing and matching. It can take a bit of trial and error to work out what works. The right combination can mean little or no nausea.
Several of my friends continued working throughout FEC one had to stop as she was a teacher and didn’t want to risk picking up a bug from one of the kids.
One other thing, try to avoid stress. The stress hormones seem to have a bigger impact when you are on this type of chemo and can give you an upset tummy.
So very sorry to hear this Barb. That is the chemo I had 18 years ago and it worked well. Main side effects were fatigue and weight gain. I hope you tolerate it well and keep you in my prayers 💕
I am so sorry to hear this news. And am sending you hugs and every good wish. I did this regime for the first three cycles of six, my first time around in 2015. It was manageable. I felt rough for the first two or three days - and just sat on sofa watching rubbish TV - but pretty OK second week and completely fine and normal on the 3rd week. I did all sorts of things in the "good" periods. Do drink loads of water. I would also just mention that I used the ice cap and I didn't lose all my hair - tho it got pretty thin. But I cropped it and could get away without a wig. I only wore a wig when I was doing events with a load of people who didn't know about it, and I didn't want questions. And it grew back as thick as ever after. My eyelashes were better than they had been! Only my eyebrows have stayed a bit ropey but I had those tattooed which is a morale lifter. Thinking of you and rooting for you x
Hope you pleased with the eyebrows. As someone else said, having it done now, means they can go over your natural hairs. It makes one look and feel much more normal. When I started the ice-cap it came out of the freezer! Later they got a machine. The machine is much easier to bear. But ask them if you can have a couple of paracetamol or ibuprofen (or both) an hour before. That did help. Am sending you hugs and thinking of you. It's a b**tard but you can – and will – get through xxx
I got my wig before and it looked exactly like my own hair. No one noticed that I had a wig. I just started wearing a wig again because my hair thinned so much from ibrance and letrozole. This one also looks very natural. I have a very hard time with the hair loss.
Sorry you got such a bad report but glad you are rallying and taking on the new challenge. Lots of good advice here on how to get ready. I was impressed by the number of ladies who came through the treatment and managed to work. So the discomfort will be temporary and then you will be much better.
Sending you loads of good wished to add to the pile. Thinking of you and hoping you can keep us updated.
My heart is breaking and I am crying with you. My prayers are for this combo to do its magic. It sounds like quite a few have had success with this combo. 🙏 and hugs for you. Blessings, Hannah
Barb, so sorry for your news. We all say we don't want chemo...but thats where we are all headed. Happy you have decided the chemo as an option. I know I wouldn't be here if I didn't take chemo at my first dx.
They have so many preventative meds for side effects now
You are a warrior and I know you will do well.
I pray for success and strength as you face another challenge on this rollercoaster.
I have always said no chemo, but I am now resigned to it after reading here how well some do. I certainly hope you blow through it in true Barb style! You continue to show us how to do this.
Regarding hair, I had my head shaved before it fell out, and asked them to adhere the wig with "3 month tape." I was able to shower, swim, etc. That sucker wasn't going anywhere, and I didn'tgo through the trauma of ever seeing myself bald! The mistake i made was ordering a long, thick wig. I naturally have thin, mousy brown, short hair. I never got used to seeing myself, and I was no good at blow drying or styling it. I don't know how women with all that hair do it.! When I go through this again, I will do a short style, more like my own. I eventually got to where I would take it off. I was surprised by how cold my head got. Scarves, hats, turbans are a must if it's cold. I had 16 weeks of chemo. 18 months to the day from shaved head to no wig.
Actually, the head hair is the easy (and kinda fun) part. It is the eyebrows and eyelashes that are the challenge. I would suggest microblading ...maybe start now so they can see your natural brow line. The eyelash serum you buy online is pretty amazing. Maybe it would help with the eyelashes. (If anyone here does theatrical makeup, I think there is a real opportunity to do a latex eyelid with a strip of false eyelashes that can be adhered to the lid. I wish I knew how to do that).
One last recommendation. Ibrance started thinning my hair pretty quickly. I bought an iRestore LED helmet on Amazon. The thinning got much better. When I stopped using it, because I'm lazy, the hair loss started again. Maybe an LED helmet would help with regrowth after your treatment.???
You are clearly strong and tough. You will power through as you do everything else. Our energy is collectively behind you. Kick its ass, Barb.
oh my dear ... I’m rooting for you. You are one of the first to welcome me and I appreciated your guidance and compassion. I send you love and virtual hugs as you start this new treatment. I do not know why so many good people have to have cancer ... 💔
Barb, you're such a brave person. This disease has caused you to try things you really didn't want to try. The IV chemo is a big one. You are an inspiration to us all. My thoughts are with you.
This is a good point. MBC forces us to make a lot of decisions we don’t want to make. This perspective reminds me that I can only do what’s out there and not best myself up
I’m not brave...I’ve cried for days...worrying about my vision...the dexamethazone withdrawal...thought Sunday was my last day on earth then worry about scan results then the shock of the results...now chemo hair loss crap side effects...I’m terrified
Barb, you're doing the best you can under horrifying circumstances. I think you qualify for a great deal of respect. You have been so supportive to all of us on this board while fighting your own battles. You are so valuable to us.
Sorry things are progressing...Faslodex was useless for me too ( so was xeloda) . I have not tried FEC yet but I moved to IV chemo(paclitaxel- taxol) last March .... After 6 months progression meant I had to move in to second chemo as clinical trial ( tropic 2). I can understand your reluctance to move to chemo but you have had already so many side effects already through your various treatments you might be able to see those through too . Yes the treatments are more intense and regular ( I had 3 weeks one one off) but actually you get into the rythm of things, you see nice and caring staff at medical day unit who recognise you every week... Sounds bonkers but it just ended up a but of social event for me during lockdown.. also you are less isolated , you are surrounded by people going through same things... I am not saying it is easy but it might not be as alienating as you anticipate....Wishing you all the best
Words escape me Barb. Something you didn’t want to hear. I’m sure the Oncologist will find the correct medicine for you. It’s all trial and error unfortunately.
Thinking of you and try and update us all as much as you can. You have been a chirpy inspiration to us all. Especially with your Bugsy stories.
Thank you for sharing your news, though not what you nor any of us wanted to hear. You are brave and I know this because your decision to start iv chemo takes bravery and then some. Praying it will be as smooth as possible and that besides obliterating the cancer there may be other bits of silver lining along the way. Much peace.
I’m sorry to hear this news. 🙏🏾🙏🏾🙏🏾 And faith for manifestation of healing. Over the past few weeks in Addition to taking Ibrance 100 MG & Letrozole I’m taking using essential oil rollerball therapy. It is a mixture of frankincense myrrh and lemongrass with the carrier oil jojoba. I try to rub itOn my body various areas seven times a day. I pray and Command cancer to be gone as I annoint myself with this oil mixture. I had the three month CT/bone scans done this past Tuesday. The result was stable lesions no change no further Mets.
So so sorry! I don’t know anything about FEC, but I do know that for me chemo has been the most successful treatment, and not the least comfortable! I’m just about to start Xeloda and hoping that it will decrease my liver, node, bone and lung (I can barely breathe) Mets....I wish us both luck!! When I had cancer the first time I was able to work full time during chemo...I was only 37, but I was waiting tables, often more than 8 hours a day!
I’m up again at 3AM and I’m thinking of you. I know you are in panic mode. Maybe I can help calm you some. I had the harsh chemo taxotere in the beginning and I don’t want it again. However it was only 8 rounds so it didn’t last forever. And so it will be with your rounds. You can get through it. And like you, I don’t think it’s brave either. You do what you gotta do and you get through it.
Wow!! You have really gotten a lot of replies. We all think so very highly of you. You have encouraged so many of us. I hope we can do the same for you. I’ve read most of your replies and I’m glad to hear that the FEC is “do-able”. However, the hair thing was pretty traumatic for me and still is. I was advised to get a fake hair wig. It looks real and keeps it shape. Wash it in the sink and it comes right back. No need to style. A real hair wig is just ... well like real hair... subject to humidity etc. I first got 2 medium length wigs but this summer I was so hot. I now have the “fresh chic” by Gabor. I love it and everybody says they love my new hair cut. They really have no idea I’m wearing a wig. Ha ha The lace front looks like it’s actually growing out of my head. I watched a few videos too on you tube. Denise Sheet is great to watch. She actually has a video on the fresh chic wig.
Let me quit rambling. Just know I’m thinking of you and wishing you all the best. Get this beast under control again with the big guns and then back to a more gentle maintenance. You can do this!
Love and hugs,
Stacy
So sorry to hear your news Barb, but also glad you are back fighting again. You chose a good time to start chemo during the next lockdown. Wishing you every success on getting it all under control.
I questioned FeC when it was offered and got a second opinion. FEC seems to be the old fashioned predecessor to Xeloda so I went for xeloda. I wanted a dose of 800mg twice per day but my oncologist insisted on 1300 twice per day. We agreed that we will drop it when we have the cancer under control again. After four 2week cycles (2on 1 week off) my markers are down from 210 to 33 and all the mets are shrinking. Xeloda has been better than Ibrance for me. I’m full of energy, skin glowing hair shiny and apart from stomach ache in the first two weeks no side affects at all and that was because I didn’t eat enough when I took the tablets. Go for it Barbara you can always change it if it doesn’t suit you x
I asked my onc re Xeloda and she said we can discuss but she would normally use as a third line therapy after docetaxol...I’m a private patient so I doubt it’s because of price
So it’s not down to cost at least. I was on Ibrance and then had to change. I go nhs and private and my private consultant agreed with me on xeloda but there will be 100s of different opinions. As long as it works for you that’s the priority. I wanted to avoid hair loss if possible ( having said that now not bothered) and iv xeloda is tablets are home
I don’t think even the oncologists know what to try next...I suspect they all have a favourite set of drugs and my cancer is very oestrogen positive..95%.. so perhaps that influences which chemo to use first...I’ll just have to trust her
I think Xeloda is a much more tuned and refined drug than FEC so I would really question them. FEC is probably cheaper 🤷🏻♀️ I think they have me down as the patient from hell as I question everything and push for what I want. I also use hyperbaric oxygen (which they said will kill me) mistletoe injections and infrared sauna. Google Celebrex and Xeloda, also helps minimise the side effects if you need it.
If you’ve read my post yesterday then you’ll know I’ve persuaded my oncologist to start me on Xeloda...I’m getting braver questioning things now whereas I would have just accepted what I was told
The oncologists haven’t a clue which drugs will be successful on which patients...nor do we so why not try one that’s not too horrendous...having said that I need the enzyme test first to see if I’m suitable...fingers crossed I prefer to avoid IV chemo as long as poss
Barb, I have been thinking about you, wonder how things are. Oh this sucks, sorry to hear about your progression and the double vision. I wish I had input about the drug that was recommended for you, but have no experience with it. I say do research when you.
I just started Taxol since the other treatment stopped working. I know I am going to be more tired, etc. hoping for the best.
Love and prayers for you as you begin this new treatment. We are all on a long and winding road; may the chemo do its job and may you find strength both physically and emotionally. My twin sister had chemo several years ago for triple negative, Stage I. It was not easy and the worst was the utter fatigue. Make sure you get LOTS OF REST!
Hi Barb, I'm often thinking of you even if I'm not always checking on this site. I had FEC with my primary diagnosis in 2011. I tolerated it really well and didn't feel unwell at all. I kept up my usual weekly dance practice and noticed a bit of lightheadedness. I totally rocked the turban route but if I had it again I would get a wig too. Not too many people know about my MBC and I want to keep it that way for as long as I can. I wish you all the best with your journey and wanted you to know we're with you in spirit.
Back in 2003 with stage 3 bc, this was the chemo I was given, a high dose version of this cocktail, 6 rounds. The F or as Sandra put it 5FU stands for Fluorouracil.
It was not an easy combination for me but made it through the 6 rounds with only 2 delays.
It did keep the return away for 14 years.
Keep as strong & positive as you can. We are here when you need us. We’ll be thinking of you 💕🤞
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MBC changing from oral chemo to drip 
Drinking green tea whilst on chemo?
May be doing IV chemo for the first time. Need tips - really freaked out!
For UK members an interesting study of statistics and chemo..
