Hey all 🙂 I’m 7 days into the second cycle and finding this week tough going - tougher than first cycle, I know that it will all pass, but finding it hard this week. Feeling nauseous and v tired. Just trying to go with it but struggling a bit....I’m gonna take the first pill I’ve had to take for nausea and hopef that will help. Cat being v cute though, and not leaving my side which is kinda nice 🙂
Its 4 fec then 4 tc or visa versa. They do 2 tests to see if fec or tc is best but you are randomly allocated fec or tc then if need be you have the other one although 30 or 40 per cent just have 4 cycles.
Saw oncologist today so need to decide if I come off the trial I am on. If I do then she said I may have 1 of the 2 drugs I would have had on the trial at a higher dose although it would be discussed at the MDT Meeting. As my second ultrasound has showed no change in size although there is marginal change I think its a no brainer as they don't need to stick to the trial protocol and I avoid having another biopsy after the fourth chemo cycle. Anyway I am having my third fec tomorrow which I am not looking forward to!
Day 19 already and cycle 2 looming on Friday. Had a port fitted today which went fairly well..only two attempts to get a cannula in..glad I now have the port. Hair started shedding yesterday after washing it. I have a lot to lose so will persevere with the cold cap and see how it goes.
Not looking forward to the next outing for chemo but got a call from Maggies to say they had a space on LGFB on Thursday so it feels like something nice rather than someone shoving a needle in me for once!
Hope you're all doing ok.
@TraceyMac - I also found the symptoms more intense on the second cycle.
For me they lasted one day longer than the first and then settled.
Re:hair - I'm not coldcapping, but as my hair seemed to be gradually thinning all over I initially planned to let it all go naturally.
However, a week after the second cycle it seemed to be stuck on 30% and a combover where my parting had widened considerably, so I had it all shaved off and was much happier.
With hindsight I left it a week too long, as for the last three days before the shave I couldn't bare to look in the mirror, whereas now I'm happy to rock bald with a headband 🙂
If you are waivering, the apprehension and fear of the shave is much worse than the reality.
Or - if you follow the pattern I did - it seems to stop shedding after the first week of the second cycle.
I don't seem to have lost any more hair since the shave - a number one crew cut - although when it sheds naturally it probably won't regrow until the end of chemo.
How much hair do you think you've lost?
Hi ladies I thought I would share my bald look with you too, I am now 10 days post second FEC and Im still doing ok apart from being awake at stupid o clock every morning. I got prescribed fluconazole on my last session for a very sore mouth and it has worked wonders, no oral thrush this time. I am also still wearing my contact lenses and have not had any problems as of yet. As well as my hair on my head I have also lost every shred of hair on my body arms, legs armpits the lot .... But I still have my eyebrows and lashes and no signs of them thinning so far but will wait and see how long that lasts. I cant believe that by the end of this month I will be half way through my journey. Sending everyone love and good wishes and positive thoughts xxxx
@Joandbasilthedog I’ve only just seen that you’re on the same drugs as me. I had them over 2 days in first cycle and over 1 day for second cycle (yesterday)....I was worried too, and I know all peeps are different, but over one day went fine for me. No complications at all...just a long old day. Hopef will be same for you. Main change in having both in one day for me is that my taste buds seem to have died a day earlier. Oh, and woke up with a headache, but had breakkie in bed with steroids and lots of water and a paracetamol and headache went by the time the steroids kicked in 🙂
Are u taking pills for the diarrhoea? I’ve been quite fortunate with that and only mild loosenings (soz for detail), But someone told me that you need to use the pills to help stop it, as the chemo prevents it stopping naturally....
Hope your energy returns soon, so that you have nice days before your Tuesday treatment...
Sending hugs x
Great to catch up on all of your stories and to feel that were not alone. Also some lovely photos.
I'm day 14 now so expecting everything to start dropping out but not just..it's only a matter of time.
im cold capping so we'll see about the head hair but touch it only when I need to and wash it once a week. First time my dry frizzy thick hair has been an advantage!
No idea what will happen to the brows and lashes yet. Hearing essential oils are good to put on them but who knows. Everyone's experience seems to be different and good to hear that many of you have kept yours for some time.
Was looking forward to my 'good' week but now booked in for a port on Tuesday to ruin that ahead of cycle 2 chemo next Friday. Still it has got to be better than 4 collapsed veins and agony last time..I sympathise with others going through that.
Other than a few headaches and sore throat, I've been ok this cycle so far with the help of Mr Ginger, lots of water, green tea and walking every day. Let's hope this continues.
Hope you all have a good day today.
Sorry hair all disappearing - smooth legs over the summer has to be positive.
Agree totally - private cover through hubbies work. This all seems to be costing a fortune - new tops to cover PICC line, ginger ale (got through lots 1st cycle!!, helped loads with nausea), etc etc. Re wig I only need to purchase once I need, but will make decision this afternnon - have a friend coming with me to help. Private health doesn't cover wig but does everything else - it's fine. WIll ask about Macmillian grant when I go to center for Look Good Feel Better session week after next. Has anyone been to session yet? How was it? Feeling a little nervous as so out of my comfort zone (again!!). Has anyone else applied for?
Love Jem xx
HI lovely ladies. Loving your photos beautiful women.
Well day 16 of cycle 1 and appear to be doing OK so far. Thanks for those who are into cycle 2 for posting how you are doing. I'm guessing it's back to 1 day at a time again for us all. Frantically getting everything sorted for next week so I can just take it as it comes.
Thanks Spange for info re eyebrows and eyelashes - will look at.
Does anyone know if I will be able to continue wearing contact lenses if (I'm being postive) eyelashes and eyebrows go?
TracyMac and Linda Corrine - fellow cold cappers - lost quite a bit yesterday if I put my fingers through my hair but 'hair wash' day today and not much - fingers crossed. Hair wash day has become an event I look forward to as I feel more me like!! Off to wig appointment today - have selcted 6 and now to try on to select. I then don't need to buy until needed - hoping not. Due to having treatment privately there is a big question as to wig voucher - appears I'm not going to get one.
Those who have treatment in next couple of days hope goes well and SE are minimal.
Take care all Jem xx
Welcome Ria - the hairs in my chin and on my upper lip (yes, I have a few yuck) seem to have stopped growing (silver linings yay). And the hair on my legs has def slowed down - I am shaving (carefully) but only needing to every every three days or so at the mo.
I had my second treatment today and all went to plan. No probs. And pumped full of steroids, but starting to feel a bit shivery from the immunotherapy which happened a few hours after on cycle 1 too, but nowt for me to worry about - will just go to early 🙂
Eyelashes and eyebrows. My nurse today at the chemo unit at the unit gave me some advice about eyebrows and eyelashes and suggested that I buy a product that will help them NOT fall out. No guarantees, obv, but worth a try, less cos of the aesthetics (though that’s obv a driver too) but cos of the impact of not having eyebrows/lashes, which help stop dust and other crap getting into dry eyes, which nurse said is most unpleasant. Here’s a link to the product she recommended. Not cheap, but seems might be a good buy,,, but...https://www.amazon.co.uk/gp/product/B000TD5KR6/ref=oh_aui_detailpage_o00_s00?ie=UTF8&psc=1
Tracey - you have your second treatment tomoz don’t you? Hope it goes well - sending peaceful vibes xx
Will try to repost my bald pic - using public option rather than hidden. I’ve gone shorter now as was getting bit patchy...number 1 all right round now. I have a pic with a blue wig too, which is quite a fun alternative 🙂 But not worn it yet. Too hot, and too busy getting used to bald look...
I do t think shaving my legs was a good idea in case I cut myself and I was told not to wax. What's everyone doing re hair removal on legs? Thanks.
Your photo's bold and clear and I love your top!
No, I'm not getting a wig.
I've had the voucher for a few weeks but although I may change my mind after chemo when my hair is taking forever to grow back I'm going to stick with scarves and turbans and today just a headband over a bald scalp because it's so hot!
A week ago I would never have even contemplated going bald in public, but now I'm quite happy with it - funny how things change 🙂
Glad you have no nausea.
My head hair seems to have stopped falling out now.
But I'm still having to shave my legs, that never thinned at all!
Hi, Ria...and welcome!
Aahh, the hair thing - although my head hair's gone I'm still having to shave my legs as that is showing no sign of slow growth at all!
I still have eyebrows & lashes & most leg hair. Am using the cold cap so hoping to keep hair on my head too. I am day 15 of cycle 2.
Can you see this picture? I've changed setting from hidden to public. Sadly every strand is now just placed on my head, can't touch or wash it. Had shower last night and where the water hit my hair line all the hair came out. I'm trying to last a few more days with hair ! My pubic hair have pretty much gone. Hoping to keep brows and lashes for as long as possible. I feel once they go I'll begin to look poorly. those a week ahead of me how are your brows/lashes lasting? It's day 2 of cycle 2 for me. I have to say Emend anti sickness is marvellous..no nausea, just a little tired today, but I did wake at 5am so that's not helped. Are you now wearing a wig Sarah? I've got mine ready but also have a lovely summer turban I bought at the wig shop which I almost prefer if I have the courage to wear it out!
Good luck to Everyone having treatment this week xxx Melissa xxx
Hi All. I'm Ria. Found a lump in April and have been diagnosed with Triple Negative Grade 3 Stage 2 Invasive Dunctal Carcinoma. Just completed the second EC on Monday and shaved my hair off about 10 days ago. Wasn't easy, especially as it was shoulder length and blond and had taken many £150 sessions in Toni and Guy to make it look as best it good. Have tried to post my baldie look but awaiting approval and then I've had a rather lovely wig made which I'll post as well. Only worn it once so far because it's been too hot but is fun to wear. Will be annoyed if I'm still having to pluck the hairs of my chin if the hair on my head is gone.......
Melsy68 and Sarah, you both look bloody gorgeous 🙂 and I love the idea of sharing pics. Nice to put faces to names. Here’s mine...
@Melsy68 - I couldn't view your photo, it's got a triangle in it, but that could be just my dodgy laptop.
However, I can see your hair in your profile pic and short suits you!
Love the idea of sharing baldy photos, it's really good to put a face to names, and share the positive part of bald - that the anticipation and dread is so much worse than the actual deed!
You look great Sarah .. you've gone a lot shorter than me, thought I'd share mine too!
Ive woken today from cycle 2 feeling ok. Had breakfast, Emend & steroids. Feel a little tired to going to have an easy day. The suns not shining in Essex so a sofa day! I've got my LGFB day on 2nd July which will only be 5 days post cycle 3. Really hope I'll be well enough to attend as it sounds like the side effects are lasting longer now we're getting into it.
@Hets67 - I alo found the side effects of cycle 2 more intense than cycle one for the first six days - one more day than cycle one.
But I am now day 8 and for the last two days my energy levels and taste are back up to normal again.
I went for the dreaded headshave yesterday, which I found quite emotional and frankly terrifying taking my seat in the barber's chair, but my dad was with me for support, the barber was wonderful, and I actually quite like the bald look!
(Although I will say black and white is more flattering than colour!!!
Morning lovely warrior women - I’ve been catching up on all the news 🙂 I’ve been a bit radio silent for the past week or so. Essay update follows (hope you sitting comfortably with a glass of cold water...) x
I’m heading to get blood tests done today in prep for tomorrow’s treatment (TPDC). Second cycle and all in one day rather than two. Am more nervous about it this time round, as the past week has been just lovely so not looking forward to doing it all again, but teeth will be gritted and brave face will go on. Also, I know a bit more about what to expect this time round, and so hopef better able to handle/counter the effects.
I thought might be useful to share what I experienced in the cycle - I hope so anyway 🙂
Days 1-4: Mainly the steroid effect and feeling a bit spaced out. Lots of energy and not enough sleep. But a positive head. Lots of soup making and walks. Taste buds went on day 3. I have bought some dark choc with raspberry (Montezuma) as a treat for this time round - hopef the taste will cut through 🙂
Days 5-10: Main things were v dry mouth/nose, inflamed gum, constant soreness around SNB wound, fatigue, feeling low and not wanting any social interaction, low appetite, headaches and general malaise! Things to hopef help this time round? I found that pineapple chunks REALLY helped with dry mouth, so stocked up on those. Someone also said that cucumber might also help so will try that too. Fatigue/low mood - am going to try to listen to my body a bit more...and not say yes to things I don’t need to. Also, I’m going to write a low energy list of things that I like to do, so that when feeling low, I can give myself good things to choose from - even if it’s just getting up and going outside and sitting on the back step for 10 mins to experience something. I have borrowed an online audiobook from library, so that’s on there too. And Netflix boxsets of The Good Fight, and Alias Grace, and The Rain lol. Need to be kind to gentle to myself on these days.
Days 11-13: Woke up on Day 11 and recognised myself again 🙂 Taste buds starting to return too. Main thing from these days for me is to take it a bit easy. Great to have energy again but all too easy to overdo it and then crash!
Days 14-21: Good days - looking forward to these days will help me with the hard days that will come before. I will write down the good things I did on these days as a reminder to myself! Actually, keeping an ongoing list of the good things throughout this process might be a bloody good idea! Hmmm.
Main other thing from cycle 1 was hair loss, as I see it is with most ladies. My hair was very long (down to waist) and I cut it short just before start of cycle 1. Started get itchy head and to lose a few strands from day 12/13 and then much more day 14, so got clippers out and did number 2 on top and number 1 on back and sides. Gulp! Glass of Chablis helped...While it’s not a choice I’d ever have made, it’s actually OK. I echo Leanne and am trying to rock the bald look. I’ve decided not to wear a wig (though do have a cheeky blue bob that I think I will wear on occasion), and will go with beanies and turbans, or naked (so to speak). Found some nice turbans at https://www.hipheadwear.co.uk/jersey-with-knot. Going to try for the Macmillan grant (I thought was means tested too, so thanks for steer), as can only use the NHS wig grant for wigs rather than for other headwear, and am booked on LGFB workshop end of June.
So that’s me. I’m feeling positive ooverall atm, but nervous about next cycle. But know that the symptoms are temporary. I went to my acabella group last night and for warm up we sang a song with the words below, which are holding me up today 🙂
I am a tower of strength within and without
I am a tower of strength within
I let all burdens fall from my shoulders
all anxieties slip from my mind.
I let every shackle be loosened
I let every shackle be loose!
And repeat from beginning! Tune - if you want to check out here’s the tune (not me singing lol, but gives you an idea!) https://youtu.be/WxK2CSTACYI
Have a good day ladies - and if you’re feeling low, sending you a warm and gentle hug xxxx
We can do this xxxx