Breast Cancer Now Forum

Hi Helen - I am pretty sure Trodelvy does cross the blood brain barrier, there is one uk lady I know of whose brain mets have literally gone!  I have weird rash to add to my side effects this time as well - on day six after second infusion of cycle three and still struggling on and off with bad bloating, diarrhoea. I hope your side effects remain tolerable - I recommend Windeze for the wind/bloating! I had primary bc 2008, FEC in 2011 followed by Taxol, recurrence 2012 7 years Letrozole  then recurrence 2019 Carboplatin, paclitaxel then Abraxane then secondaries early 2020 and flipped to Triple neg. Capecitibane kept it at bay till November 2021 and now the joys of Trodelvy! if you are a facebook user there is a specific group for trodelvy stage 3 and 4 - I am on there too under my real name. Useful experience from uk and us ladies on there. I will DM you. X ... View more

Hi everyone - I thought I would give an update on my experience so far with trodelvy. Please bear in mind this is my experience and not everyone’s, we are all different! I have just had infusion 2 of cycle three, ct scan shows very slight progression but this could be a false flag due to five week wait for the drug…I am changing oncologist and think plan might be a pet-ct in a few weeks. Side effects so far have been different with every cycle: first one was severe constipation, headache and limited diarrhoea. Second diarrhoea, fatigue, bloating and gurgling/acid and third seems to be doing a pick and mix of all the previous! I am finding this one quite tough tbh, and this is my sixth type of chemo so I consider myself pretty hardcore! What I find very difficult is the unpredictability of the side effects - with some previous chemos you can pretty much predict a rough pattern of good days and bad days - Trodelvy sings to its own tune it would appear! I had an extra week off due to uti and managed to sneak in a week in the canaries so I am not THAT poorly on it… Other issues for me have been with blood sugars, but I am type 2 diabetic, even so worth keeping an eye on if you are prone to be pre diabetic maybe? Anyone else on this drug anything to report/add? Ruby xx ... View more

I have had multiple previous chemos inc tax, fec, carboplatin, abraxane and Capecitibane. I got a year out of Capecitibane before progressing. Trodelvy being relatively kind so far but am only on day four so still benefiting from the pre meds and steroids which are doing the trick albeit is screwing with my blood sugars! ... View more

Hi Kelliebear, Sorry to hear you are struggling with the after effects of your op, it is a big op I understand I hope they improve quickly for you.  you seem to have been given an awful lot of at times conflicting and confusing information from a number of people, I hope your meeting with the oncologist provides clarity. You might want to prepare a list of questions. Best of luck, let us know how you get on please? Ruby xx ... View more

Good luck for a Tuesday minimad, try not to worry about mammogram, I had mine a few weeks ago it was ok.  Ruby x ... View more

@Alvilajo wrote: Hair look fab xxxx @mini mad wrote: Hi RUbythursday,   hows things going with you ?? im waiting for a biopsy result on a nodule on my throid 😳  hoping its not too much to worry about. had my first hair cut today on my post chemo hair ( 6 months ago ).  Will try n post pictures to show all you lovely ladies out there that yes,  it does grow back.. good luck everyone. Xx mini mad xx 💖💖     looks fabulous! Good luck with the tests x ... View more

Hi Minimad,    I need either your email address you use for your Facebook account or your facebook name or both to add you, best send me a private message. Alternately if you search for June 2019 Chemo Ladies you should be able to request to join. Looking forward to seeing you over there! Ruby xx ... View more

Hi Helen, I have added you to the group 🙂 xx ... View more

@whlsarah wrote: Happy New Year all,  im sorry I’ve not been here much, but I’ve requested to join the fb group.  I finished chemo in October. The last one knocked me out! Now on herceptin injections every three weeks.  I had surgery just before Christmas - which was successful. Just started tamoxifen and about to start radiotherapy 😬 Hi Sarah - I have added you 🙂 just changed the group settings to private so can still be found but only members can see the posts. Ruby x ... View more

ok I have created a Facebook group called June 2019 Chemo Ladies. We can discuss a different name in the group and change it 🙂 you can search for the group in Facebook or pm me your email address used for Facebook and I will add you.   it is set to public at the moment so you can find it and ask to be added, once those of you who want to be in are in we can make it a secret group. Any volunteers to be admin? Always a good idea to have at least two!     ... View more

Hello everyone, happy new year to you all!   I seem to be popping on here less and less frequently, probably as I am so knackered from work! It’s a bit of a shock to the system!   As out treatments naturally come to an end I wonder if anyone would like to keep in touch via Facebook? I am a little uncomfortable with the complete lack of privacy on here and we could have a private group on Facebook, I set this up before for the August 2011 chemo thread ladies, it has worked very well.   what do you think?    Ruby xx (not actually my real name...) ... View more

@Zed51 wrote: Happy New Year all has anyone taken out travel insurance since diagnosis? Any recommendations? Thanks. Zx  Highly recommend Boots insurance ... View more

Hello ladies, managed two full days this week at work, now utterly exhausted!   had a clear ct scan though, going into exemestane in the new year 😊    hugs to you all 😊 xx ... View more

Hello lovelies,   sorry to hear some of you are struggling, I found the end of treatment hard last time I did chemo and the same this time. Almost like a fog comes down.   My hair is super slow to come back, it’s only just started growing proper hair instead of uncle fester fluff!   i am going back to work tomorrow for the first time since April..eek! i have forgotten so much it will be a bit like starting a new job! just two days this week, three next building back up to full time by January.   oncologist Tuesday to get the results from my end of chemo ct scan.   hope you have all had a fabulous weekend and have found more things to smile about than cry about!   Ruby xx ... View more

Hello Ladies,   well done chemo and rads finishers!   re zoladex, I had this for about six months, the injection is fine and side effects for me were ok. I have also had anastrozole, it caused some joint pain in my thumbs bizarrely so I was moved to letrozole. Other than that hot flushes and dryness, some hair thinning with all the AI drugs I have had. It’s all doable and so much easier than chemo, remember the millions of people without issues often are busy getting on with their lives and don’t post to say they are fine so what you read on line can be a little bit skewed!   On a lighter note - my eyebrows and eyelashes fell out completely three weeks after chemo finished having held on to them for all those months! Weird eh? I know have five o clock eyebrow stubble!   Ruby xx ... View more

@Alvilajo wrote: I feel the odd one out for the first time lol. I’ve done office work call centre but royal defo the best we have a laugh. I’m thinking beginning of feb but might be too soon as they say your more tired after xxx Morning all, I am not a teacher and I don’t work in a school! I work for the county council managing it suppliers, contracts and service levels 🙂 i will be doing a phased return when I go back, meeting my boss for coffee next Wednesday to catch up and agree details.   hope you are all ok on this soggy Saturday. Ruby xx ... View more

hello all! I am still here 😊 finished chemo two weeks ago, bit down tbh last few days but physically starting to recover at least! Back to work start of December. Ruby xx @mini mad wrote: Hi again Alvilajo,  no i didnt burn, but by the final rad i was going pink.  I wore a crop top most of the time.  Used loads of cream and would apply it after each rad before i got dressed.  Also used my husband John's cotton hankies under my boobs,  nice and cool.   not weird or anything but try n lie on your bed topless for a while each day,  fresh air us good for the skin.   my paclitaxel and carboplatin where never reduced.. when i had a reaction twice to the paclitaxel ,  i had it for the first 30 mns at a slower rate then increased to normal rate.   i have my next Zoladronic infusion in january 2020.  Cant stand cannulas 😳😳 take care.  Mini mad xx 💖💖   Ps. Dont see Rubythursday on here,  has she finished her chemo ?? do you know..                 ... View more

Yes it’s hormonal therapy. Tiny tablet onceca day xx @Alvilajo wrote: Aw ruby, is letrazol hormone therapy? It’s tough nearing the end isn’t it xxxxx @rubythursday wrote: Hi Vic,   i have done seven seven years on letrozole, it’s much, much easier than chemo - most people find it very doable. Also, if you really struggle with one type there are lots of others to try. Think of it as your insurance policy!   feeling your pain on the chemo front, mine was last Wednesday feeling rubbish this week!   Ruby xx @Alvilajo wrote: Hi, had my radio therapy chat today, felt scared after but coming out of it now. I have to have a bone density scan to measure where bones are at before hormone therapy and breast scan as left side to see if heart can be seen, if so I will need to hold my breath whilst being done. Hormone therapy is what I’m dreading and I’m having four weeks radio therapy last one a booster as under 50. Think I feel worse as feeling crap from chemo last Thursday. Anyone else going on hormone therapy ? X vic x       ... View more