It was great to swim again, It really highlighted to me how much bone and joint paint I am in. It felt so good to stretch out and not be in pain, I felt so light! I was advised to avoid swimming though until my skin healed (I risked it for a biscuit though - I could not resist the Jacuzi).
Sorry to hear about your skin Michelle and that I have not been on for a wee bit. I was never given gel just zerobase cream to pop on, so I do not think I am much help on that front. Though at the Beatson I was advised that they have nurses on hand for you to drop in and get them to check out your skin, was told no appointment was needed just to ask at the reception. I am hoping you had that support too? How are you getting on now?
A small update re the skin progression for your expectations really, my skin as well as peeling has become discoloured looks dirty rather than tanned. Can see quite a severe line where the old skin has peeled off and the slightly pinker skin was peeking through. The skin has stopped peeling but it is almost like a watermark of discoloured skin around. It is a little unsightly but I am assuming over time this will fade. Has anyone else had experience with this?
In other news......My period has arrived, aged 40 at diagnosis, last perod just after first FEC-T Chemo, last Chemo 19th July, started oral chemo Capecitabine on the 20th of November! I had been expecting a forced menopuase, as per the medical advice and been having all the hot flushes but there is no denying it, it has arrived. So good news for my bone health overall I guess. I do not think I will complain about not having a period again.
Sending you hugs and healing for your skin, x
Hoping the blisters and skin is beginning to recover for you now Michelle.
My skin has darkened and started peeling away with healthy new skin underneath so although it looks worse the pain is diminishing. though I am still not wearing a bra atm. I hope this will be you soon Michelle, x
I was kidnapped by my mum for a mini break and had lots of relaxation, some naps, a little walking and lots of eating out! It was just lovley, beginning to feel like I need to be more active again!
In other news, made a bhoona from scratch, reducing all of the onions and tomatoes to make a gravy. It which tasted really yummy and added in lots of additional veg to increase my veg count further. Felt just like a take away but as I only used some spray oil and then water to prevent it sticking to the pan feel like I am getting all the taste in a healthy way!!
Hope everything is going well for everyone on here, x
I’m so sorry, Michelle, that you are having a hard time with the effects of radiotherapy on your skin. Those blisters must be very painful. I hope the gel eventually works.
Hi Euby, hope the chemo has gone ok this week. Is your skin getting any better now?
Not a runner at, preference is walking, swimming and dancing! But going to start small with Yoga and Tai Chi and then build from there. Once my fittness improves I might think about running.
I agree, I think we just need to take the plunge and call ourselves cured in one respect.
Got the new drugs it is going to be a much easier regime than FEC-T, most things are though!
my Mum is whisking me away for a little treat so looking forward to that. Hope your SE have now peaked and are beginning to improve.
Ooo also Oncologist advised that she would be surprised if I did not still have bone and joint pain at this time so feel quite positive about that. Neuropathy can take up to 2 years to improve ....eek, but most likely patients start to see an improvement 3 - 6 months after!
I have enrolled in a Live Active initative we have locally to get more active. Also looking to start weight bearing excercise to help mitigate Osteoporosis onset. Onccologist advised that they will wait till 12 months after my chemo before considering me Menopausal and take things from there but that as I am realy focusing on healthier eating and excersise I am doing the most adventagous thing already. However she suggested I do take VIT D as a suppliment, so will do. I am not huge fan of suppliments but she advised this is the one we struggle to get from our diet the most so giving that a go.
Has anyone else received lifestyle guidence from their team at all?
Can you tell I am trying to increase my fruit and veg to 10 day too! Mixed suscess so far!
I have managed to avoid most processed meats, and probably reduced meat and chicken consumption to 3 times a week, but feel I have been processed carbing out rather than managing the whole veg instead.....keeping on with it though.
I have a bout of laringitus from nowhere currently - need to stop talking so much!. My skin has started to peel from the radiotherpy (underarms and also under breast - I had a spot of Psoris there which seemed to break down) but there is healthy skin underneath so it seems all good to me! The pain and tenderness is reducing already from the skin, so have my fingers crossed for you that it will be similar.
How are you finding things Michelle, how is your fatigue and are you finding that your skin reaction is still progressing? .
Oncology appointment was ok. Got my bloods done there and I start chemo on Monday hopefully. In the appointment I asked a few questions but did not learn anything more than I had already found out for myself. I had seen a post where someone had said they had only 1 in 10 cancer cells left alive so asked if there was any info like that on me. I alreadyknew I had a partial response and the measures for that and was advised pathology wise tumor inspection reveled that over 50% of the tumor was necortic but nothing more specic than that. I asked about chances of recurrance and was advised that they do not measure this as such, just the survivbility rate in 5 years time using the Predict model and as I had neo adjuvant treatement this data was not capturered. I had already found predict on my own so as long as measured my staging correclty I have an idea of the figures relating to that. It has brought into focus what I knew already that we are never really considered "cancer free" even "remission" is not deemed that. Might seem a bit doom and gloom however it was something I was wrangling with as OH kept saying remember you no longer have cancer (after the surgery) and I had niggle but no one has said that to me claearly. It is sometimes a challange to brace that idea. I am not pessimistic just being very literal. Logically I know I have had curative treatement and chances are good at least over 80% of 5 year surviability however we all feel and have worries and anxiety and feel this will be with us for quite some time.
Best thing about my oncollogy appointment was in the waiting room I met another lovely lady with her little baby who I had seen near the beginning of my cancer journey looking so well and with lots of hair. I found out she was also TN and is on the treatement I am due for. She had a parital response and asked for the treatement (as a nurse - she knew to ask). She explained the side effects were very minimal for her so that is great news for me, I did not realise but I think that had been weighing on me a great deal as I felt very upbeat and relieved. Trying not to worry about the fact that I was automatticaly offered the treatement that she had to ask for and what that means but going to focus on the positives instead.
I think I have been too much socliasing this week and should probably try and slow down a little but so determined to get my activity up.....been far too sedentary for far too long (including before the diagnosis) and really want to do my bit to fight and improve my chances.
Yay on ringing the bell!
Congratulations on being finished this part of your journey Michelle.
2 easy quick additions for your 10 a day
1 glass of fresh juice (150ml)
2 tablespoons of raisins (add to breakfast ceral/porridge or desert)
Some other inspriation that may work for you (depends on your taste)
Hope there may be something new in this to inspire you,
Sorry that was so ridiculous bad. I was in a hurry, no glasses on and using my phone.
Should have read... The diet info came from the World Cancer Research Fund.
I am trying to see what i can and can't eat to make my diet more healthy. Not allowed vegetable oil or sunflower oil so i have invested in an olive oil spray and a coconut oil spray to see how that does. Not allowed margarine but i am allowed butter but not great big chunks. Need lots of fruit and veg. I was told 9 portions a day which should be 3 fruit and 6 veg and a total of 30 different ones in a week. Now that is a challenge...
Thank you for your kind thoughts will let you know how I get on.
Had a little look at May thread JaqB has particpated in the ROSCO Trial which is why the chemo was split into two sessions. I beleive the purpose of the trail is to try and find out if they can find any links between tumor types and response to the two types of chemo in case they only need to treat with one.
However noticed that another lady had TNBC and she received a different Chemo regime altogether from me. I beleive I may have been a little unlucky in timing as I beleive the NICE guidelines may have updated at some point through this year and I may be one of the last sets of patients with TNBC to receive FEC-T rather than a regime that includes the Capecitabine in the first place. It is one of the things I will be asking my lovely oncologist about tomorrow.
Yay for last Radiotherpy treatement *rings the bell* time to celebrate I think!
(WARNING LONG POST - Must have needed to my journey out there into the ethos).
Good to know what the options may be If I need them, beleive I already have hydrocortisoe cream for another skin condition...lol
I have not yet finished my treatement, I have an appointment with Oncologist wed who will check my radiotherpy reaction and also discuss next steps with me.
So I was diagnosed with TNBC in March which is grade 3, no staging was offered by my medical team, The Tumor was around 4 - 4.5 cm and I had no node involvement. My treatement plans was 6 cycles of FEC-T, followed by lumptomy follwed my radiotherpy.
I found the FEC and Docetaxel affected me qute differently.
Major symptoms of FEC
Yeast infection Oral
I would have one bad week and noticably recover over that week to an almost normal state within 7 days. It was not pleasent and although I felt quite clearly ill as a result of the treatment it also felt managable in some ways.
Major syptoms of Docetaxel
Bone & Joint Pain
Hand/Foot Syndrom (blistering of soles of feet)
Yeast Infection Oral
Nail damage (in the end lost 2 of my big nails - not sure if they grow back again?)
I would have a delayed response to the Doxcetal where it would really not start to impact me until 2 days and I found that it would take at least 10 days before the SE started to ease and was only getting back to normal in time for the next cycle to start. I felt quite clearly ill as a result of the treatment and not so managable in many ways. I would describe the experience as turning into a cat, sleeping, waking and eating and then sleeping, waking and eating. TIme seems to travel on by quite quickly.
My Feelings on the total ecperience to date
I felt an immediate response in my tumor to the FEC treatement but "felt" that there was little response to the Docetaxel treatements. Over time I started to get breast pain and "felt" as if the tumor was getting larger again, this could all easily be inflamation and also anxiety etc. I found the first Docetaxel to be quite impactful, the 2nd to be less so but still severe and the third one was the worst and I almost feel like I have not recovered from that one (19th of August 2018)
Current most noticable SE
I am still in significant pain within my joints and muscles,
Still struggle with getting up and down, moving around or standing for long perods at a time (though it is improving generally but slowly).
I have neuropathy,
Chemo brain and low attention span
Low mood or lack of motivation on occasion.
I feel my SE are probably quite typicl of most people but outlined them as I was finding it reassuring to here see the journeys of others and it helped me to normalise what I was experiencing.
My lumpectomy has came and went, removed 31mm tumor with clear margins and without many complications so far and I feel as if it is not too invasive a procedure for me luckily - (probably due to no Lypmh node involvement). Ironically I do however feel like my lump is still with me as the void was filled by fluid that will be abosrbed by the body as it heals over time.
As TNBC there are no homonal therpies or treatments. I unfortunately did not have a complete pathologcal response to the FEC-T and as the onccologist put it "Did not respond as well as hoped" to the Chemotherpy so have been advised I have to a further 8 cycles of oral chemo drug Capecitabine.....which kind of knocked the stuffing from me as a further 6 months of chemo does not fill me with joyful anticipation.
Overall I remain positive and just trying to relax and practice self care taking it all one step at a time. Been advised that it can take up to 12 months for the SE to diminish from Chemo so just keeping on kepping on . I have yet to meet or come across another indivdual in a similar situation as me or who has taken the Adjuvant Capecitabine for TNBC after receiving Neo Adjuvant course first. Sometimes I think that might be the hardest part.
I really should start getting my questions ready for meeting on Wednesday.....this is inspiring me! Thank you for asking about my journey I really do feel sometimes I need prompting in some ways!
Hope everyone is having a good week and coping with their SE and sending you all some love and luck, xxx
I wanted to say I am also an April 2018 Chemo started and although I did not sign up to the forum till recently just reading what everyone was sharing helped me with my journey a great deal.
In re to Michelle I am only recenlty finished my Radiotherpy on the 05/11/2018 and had 19 treatements. I have found that the fatigue did not increase much at all however my skin reaction is still developing over time. I had noticed almost no skin reaction until about session 14, it is worse in my armpit of all places and also under my breast, bascially in all of the flextures where the skin tends to be a bit thinner.
The medical team focus on if the skin is broken or not and was advised I can drop in any time and just ask to see a nurse in relation to my skin and they will check it over and dress it is need be.
It’s good not to have to know. I’m having zoledronic acid at 6-month intervals to discourage osteoporosis & bone cancer (hope I don’t get that!). Just have to accept what the medics tell me is needed. Know exactly what you mean by those tubes. Only 2 more rads - way to go! Hope you have the most minimal side effects possible.
That sounds really grim for you, Linda. I was wondering if the effects of the anaesthetic are part of your sickness, even this long after surgery.
Do hope you are able to enjoy Christmas, Michelle, after daily radiotherapy - you’re right about this bringing home the enormity of what has happened. My moment of this came when I was having a zoledronic acid infusion post-chemo but in the chemo ward. Hated going back there and felt so sorry for the woman next to me because I recognised the chemo she was having and knew she was almost certainly about to have a bad time.
Hi Michelle. You must be counting it down to the end now. My experience was nearly 20 years ago now and i was only 34 so coped with radiotherapy pretty well. I am sure technology has changed over the years and the process improved. I had skin care advice at the hospital before i started and was reviewed during treatment. The advise i had was to apply Aloe Vera but it had to be the 100% pure variety. I used it all the way through and was lucky not to have any skin problems at all. From what i have seen on here that appears to be unusual in the present day. May be it was a lower dose then as i had 30 treatments and now it has been reduced significantly. I worked while going through treatment and had appointments around 4.30 in the afternoon so i could then get back to pick my then 4 year old up from nursery, so I don't think the tiredness was that significant or I have forgotten that bit. Anyway that was a long time ago so things must have changed now.
All the best and I hope your skin doesn't get too uncomfortable.
I had my last radiotherapy towards the end of September and was quite tired for a couple of weeks afterwards but, compared with the tiredness of chemo, this was nowhere near as bad. I think, though, that there is a lot of individual variation. The area treated is still visibly affected and, for about three weeks my nipple was sore. This soreness has gone now.
I hope it all goes well for you when your radiotherapy starts.
I was 8/8 oestrogen & advised to be on exemestane for at least 10 years, which encourages me to think that maybe I’m expected to survive for quite a while.
My neuropathy has been in my feet rather than my hands and each time i have a herceptin injection it becomes more noticable. it does fade over the three weeks between but comes back. The oncologist denies this is a side effect.
My hands are effected by the joint pains from herceptin as well as my shoulders and hips. I was adviced to keep moving but have not given any other advise. I also had my first Zoladex injection for 17 years so i am not sure what side effects i will get from that. Yesterday i bought a suppliment of glucosamine, omega 3 and a few vitamins just to see if they help. Willing to try anything to get some proper pain free sleeps. I am trying to get back to the gym but i can't do alot yet. I have an appointment with the plastic surgeon today and have a few questions on movement and gym work after the reconstruction. I haven't gone back to using weights yet at all and am very wary of my arms/chest muscles. I do like doing a few squats and do a good stretch routine at the end.
I haven't worn much mascara over the last year but i have got back to using it a few times recently and the lashes are definitely improving. Although i didn't lose all of my hair on my head as i scalp cooled, it is still coming out and is thinner than i would like. Keep trying different shampoos and conditioners to give a bit of volume. Any recommendations would be appreciated. I have tried a non permanent hair colour too which has brightened it up a bit.
Well i need to check what tubes are running and if i need to walk the last bit. As long as the rain stays off at that point i don't mind the 25 minute walk from Earls Court. Just need to go the right way.
Have a good day.
It’s already a long day, then, Gigi. I hope the painkillers have worked on your achy legs. Things I was told by oncology medics, like “pins and needles” and achy joints”, sound so innocuous but the reality is very hard to bear. The effort involved in simply getting about is exhausting. I hope your day goes well.
Thick eyelashes (not yet very long) are a consolation. They’ve never been this good. Hair on top is still only babyfuzz but at least it’s there and growing. Got to find something to enjoy.
I’m grateful for all the posts about neuropathy. It sounds as though everyone who had the same chemo is still having pins and needles, so I need to be a bit more patient. I get furious with myself when I keep dropping things.
I’ve just had an NHS survey to fill in. It asks if the long-term effects of treatment were explained to me. Probably they were but in the horrible fog of hospital visits and treatment regimes most of what was said to me is a blank.
Maybe I’ll get an eyelash curler. x