Hope everyone is doing well and keeping safe in these difficult times.
I wasnt able to have my chemo again this week due to low blood count. So thats session 6 and 7 ( that was a double of taxol.and carboplatin)ive now missed. I didnt realised that they still carried on to the next session which will be 8. Does any one know if u end up catching up at the end of the treatment plan . ? Or does it just depend on results.
This has made me feel really low and obviously self isolating due to high risk of infection. Im just hoping when i go for bloods on monday and to see the oncologist monday too that my blood has increased.
This coronavirus is very worrying my hospital has just been identified as one of the second hot spots in the country following London. Although i desperately want to proceed with treatment i feel very scared .
Im a Clinical Nurse Practitioner and have worked in the NHS for the last 30 years just wish i could be there now to help patients instead of having to have treatment myself.
Take Care and stay safe everyone
Love Daisy xxxx
Good to hear cold capping the s working so well for you. Hope you can carry on if it’s allowed. I haven’t been told yet if I will be allowed to take anyone with me for my 3rd chemo but I totally get what you’re saying about living your family but also very supportive to be able to speak to other patients. I don’t have a PICC line as they don’t do them here. My arm is still sore a week on from EC last week. Onc Nurse says E is very hard on veins so have to use other arm next time. Turns out I have to have 4 EC which I hadn’t realised. 😐 I had a lovely walk up in the glens today away from all people apart from my OH who is looking after me really well making sure I don’t get near any people! My younger son came to visit yesterday and had to talk to me through the window which was sad and happy at the same time. Hope you are all finding some little things to be happy about in all of this xx
Hi All, just back from round 3 of chemo. Cold cap made me feel a little sick by the end but fine once it was off. My hospital said they may have to stop cold capping to reduce treatment times and contact due to corona virus. I wait to see. I still have a full head of hair so it has been worth it. We too have no visitors with us. I love my family to bits but it was nice to talk to other patients today. They also said the clinic appointments may be done over the phone and picc care every 10 days not 7. Hope you are all doing ok. Stay positive and find something that makes you smile. 😀
Just look after yourself Tracy and hope tomorrow is a better day and arm improves.
Here if u need to chat.
Artycart ❤️ Just keep vigilant and take temp regularly and if you don’t feel right even with no temp, phone your rapid response ❤️ Main thing during chemo is keep safe, don’t be blasé with it and you’ll all get through safe ❤️💕💕✨✨Shi xx
I’m feeling ok now I’ve had a sleep and I think my arm is improving. Being in hospital at this strange time was not comfortable. The news tonight when I got home was that a member of staff in adult cancer care at my hospital has been found to be positive for the virus which is all I needed to hear. Now on lockdown at home until I have to go back for next treatment! Tracy xxx
I was back in hospital overnight last night due to my arm swelling up above where the chemo was injected. They’ve decided it was just a reaction to the chemo. Not good news when I’ve just had my second cycle and have lots more to come. I haven’t been told anything yet about chemo appointments but I don’t have my next one until beginning of April. Things could be much worse by then though so we’ll see what happens. Take care everyone xxx 😘
Thank you for your reply too .Hope you are keeping ok .
There doesnt seem to be any changes at present when i asked today. The department was busy.
My hospital is Newcross in Wolverhampton. So far can still take one person with you to chemo even though visiting has been suspended on the wards. Whether or not this will change again im not sure as advice seems to be changing quite rapidly.
Thank you Tracy . Hope you are doing ok and keeping Safe with this virus too. Such a worrying time for everyone.
Love Daisy xxx
So sorry to hear that Daisy, they will only do what is best for you as Tracy says.
Are services changing for people? I have had none urgent appts cancelled and my oncology review will be by phone. Also been told no partner to be with me during chemo.
So sorry to hear that Daisy. I know you just want to get on with the treatments but they’ve got to do the best for you. Sending you hugs and hoping so much that your blood results are better on Wednesday so that you can have your treatment xxx
Hope you are all ok.
Ive been for bloods today and the unit have rang to say WBC is low again. ( lower than previous week but feel ok no temp or anything )
Got to be retested on wed to see if can have chemo this week.
I so hope so as i dont want to miss another week as my chest pain is worse again .
Lots of love
Thank you Vornsta. Will keep on drinking the herbal peppermint tea !
Hope you are having a good Day
Hi Tracy and everyone
Hope you are all doing ok and staying safe with this coronavirus.
Glad you were able to have your treatment this week Tracy.
Ive got to go for bloods on monday to see if WBC have increased for treatment on Wednesday. I hope so as just want to keep going through ticking them off.
Im suffering with terrible constant burping is causing such discomfort in my chest and middle of shoulders. I already take lansoprazole and gaviscon. Ive never suffered from anything b4 this . Ive tried peppermint tea/Ginger tea . Strong mints / small meals. Elevating my bed. Any ideas greatly receieved.
Take care Everyone and keep safe
Glad you had your treatment ok Artycat! I completely take my headscarf off to you wearing the cold cap for 5 hours!!! 2 and a half - 3 hours is more than enough for my liking!!!! I also wash mine more than I should I think....although no blow drying or straightening but that’s mostly because it air dries so quickly!!!!
i too went out for a lovely walk today and really enjoyed the spring fee in the air!!
Thomaschix - I also found my second treatment with cold cap much more intense at first. It was ok after the usual brain freeze! And I had it on for nearly five hours Today as there was a delay with my chemo arriving probably because my count was on the borderline and they weren’t sure if the onc would go ahead or not. A hilarious gentleman arrived nextchair to me who was having his first cold cap and laughed his way through it much as I did the first time! He was thanking the nurse for abusing him trying to get the cap on and had a laugh about him having to get stick on sideburns with the cap not touching the temple areas. Kept me amused after a long day of waiting.
Caead - I probably am washing my hair too much but I just can’t bear it sticking to my head! It’s still there though just getting thinner 😃
Hope everyone is doing ok with all the worries going around just now. On the plus side at least the nights are getting lighter and there is blossom on the trees which is cheering me up. Even saw two deer having their breakfast in the city this morning! Xx
My understanding is that margins are the rim of normal breast tissue around the cancer...what it means in this context I really wouldn't like to guess at...you might be better off asking the nurses on here about this question as I'm sure everyone will have a different interpretation and best to try and get factual Information from the people who know.
hope everyone is coping with the treatment as we are all almost half way through and dodging corona
i had an appointment with onco yesterday and she said the tumor reduced and can’t feel the margins . Couldn’t understand what is meant by can’t feel the margins
If any consolation my white blood count plummeted after first 2 treatments but came right back up after 3rd...nurse told me it often fluctuates and comes back up even if it's dipped very low. C virus very worrying, I asked my onc about delaying treatment but he said it's bad idea...guessing we just have to sit tight and try and minimise exposure to people🙄. Sx
ive cold capped for all three of my treatments so far. 2 weeks after the first it started coming out and became very thin. It continued the shed for a few days but then it slowed down and it’s now thin with a couple of very small balding patches but I still have coverage all over so I consider that a success so far.
todays cold cap was way more uncomfortable (I’m guessing because there’s less hair to buffer the cold!!) but still got through it
scalp was sore when it was falling out at its worst. I’ve been wearing headscarves to stop me playing with it too much and to cover up how rubbish condition it is and looks!!!
Hi Tracey, no sore scalp. Itchy at times but I used to get that before so nothing new. I wash mine every 2/3 days but nothing else. I probably get through a couple of days and realise I haven’t brushed it. Those are the times I notice hairs coming out when I wash or brush it. Good idea about getting used to the wig. The shampoo I use is from the body shop. I quite like it. After the first time I was told not to use shampoo with parabans or sulphates. When I got home to only one I could find was a sample of baby shampoo. I think people do have thinning and patches.
Have you had a sore scalp at all? Mine has been quite prickly and uncomfortable the last few days. I have a patch at each side at my temples one of which is completely lost all the hair. And throughout the crown if I touch it lots is coming out. I’m wondering if I’m doing something wrong. I’m using ph neutral shampoo but I am washing it a lot which might be the problem. I’m wearing my wig today to try to get used to it incase it all goes. T x
I use cold cap and hair has started to come out in clumps, not yet obv to look at. Doesn’t work for everyone but may lead to thinning rather than going bald. Love to all
Hi Tracey, I have been doing the cold cap too. I’ve done 2 rounds of chemo so far and 3rd is due to happen next week. I do have hairs falling out but just strand by strand not noticeable amounts. I believe I’m quite lucky as it doesn’t work for all. I have quite a lot of hair so any thinning currently is unnoticeable. I am hoping that continues but no idea if it will.
Hi Daisy and everyone else too,
Sorry to hear you couldn’t have your treatment Daisy. I hope things are better for you next week xx
I’ve just heard from the hospital that my white blood count is right on the cut off point so I will get my treatment this time but it’s a bit worrying as I’ve only had one treatment so far and already looking problematic. All this corona virus info on tv tonight is seriously scary too. I’ve been out and about a bit but have been off work as I’m a trainee dental nurse. My hair is coming out quickly over the last couple of days. Even with the cold cap I’m losing quite a bit. Not sure if this is normal?
Hope everyone else is doing ok this week 💖
White blood count to low today so no chemotherapy for me today.
Feel fed up today
Love to you all
Hope you are all doing ok today. Im having an off day havent been able to do much as unable to stand on my left heel. This has happened previously with the chemo. Ive been trying ibuprofen gel as it worked last time .
Hopefully WBC will have increased tomorrow to have next session.
Hate having days when cant do anything makes me feel so fustrated and low in mood .
Sorry to moan as i know we are all going through the same and soon this will all be over and normal life will resume .
Love to you all
Really useful info re coronavirus....I've been trying to find out for days biut nobody seems to know! Thanks Vornsta! x
Thanks for the feedback Vornsta. Good to know about the differences between infection and virus risk!! Hopefully that will help me convince hubby he doesn’t need to pay hundreds of pounds for more hand sanitiser!!!!
Totally understand about the dizziness!! I sing with a choir and the week after treatment I just cannot stand and sing because I feel so light headed! Thankfully I can sit and sing so managing to keep going at the moment
Good luck with bloods Daisy and Tomachix. I asked about coronavirus- was told treatment lowers the neutrophil count not the lymphocyte count so makes us vulnerable to bacterial infection more than viral, we are at slightly increased risk through having a chronic condition now. I’m trying to reduce non-essential travel and make sure everyone in the family washing their hands but totally relate to your wish to be wrapped in bubble wrap. Anyone else get really bad dizziness post ec? Its when i get up to go to the loo from bed - i have to take it really slowly or I black out.
Hope your bloods come back ok Daisy and your treatment can go ahead on Wednesday. I’m in for clinic and bloods tomorrow for treatment Thursday. I hate the thought that it might get delayed so keeping everything crossed for you x
Hope you are ok. I havent been give any advice regarding coronavirus . I have my treatment at Newcross Hospital wolverhampton which has just come on the news.
Im hoping to have my chemo on wed but just had a call from hospital to say white blood count is low so will have to have repeat bloods on wed before treatment can go ahead.
I so hope they increase so i can plough on .
just wondering if anyone has been given any specific advice from their team regarding coronavirus (other than the general advice out there)? I haven’t been too worried about it all until today and am suddenly panicking that I should be drenching myself in antibac and wrapping myself in bubble wrap?!?!
Just me 2 ❤️ I don’t know if this will help but I was same as you and I clipped mine to a grade 2 when this started happening after I’d gone from waist length to Bob. It was liberating to take back a bit of control and when it did all go it wasn’t such a shock ❤️ Sending you big ❤️ I did have a cry too while I did it, it’s all part of the journey. Get your makeup on first, I ended up looking like action man without my face on 😁💕💕✨✨Shi xx
I have friends who have a shaving party with fizz etc. Seemed to help them. It is such a tough journey, big hugs. Have you got wig/scarves/hats organised? Xxx
i knew I would be losing my hair, and even cut it from lower back length to short bob in anticipation and hopes it would be less traumatic. It is coming out by the handful now and I find myself emotional and wishing it to just be over with but also dreading the bald look. Any advice or tips for me? Hugs to all
Sorry to hear of your diagnosis and with such cruel timing as well. Totally understandable that you are feeling emotional as I’m sure all of us who are here feel up and down all the time. I hope you are feeling better with your chest infection. Hugs. I was definitely quite grumpy after my treatment for the first week but I’ve only had one, with the second this Friday so will see what my mood is like then. I have a sore prickly scalp and I have started to notice some hair shedding now though I cold capped. I have received word on my genetic tests to say that they haven’t found any mutations on my BRAC1 or BRCA2 but I have tnbc too and need 4-6 months of chemo to try to shrink my tumour before I can have surgery.
How is everyone else getting on this week?
Just to say welcome to the group. Im in round 6 of chemo on Tuesdays. Just to say im very emotional too. Its such a sureal experience but one we will all put behind us. Im having chemo first then surgery . The side effects can be challenging at times to manage but just take each day at a time and be kind to yourself. Hope you have got support from family and friends too
If theres any thing u want to ask feel free.
Love Daisy xxx
Welcome Mousey63, not surprised you are emotional- it is a very hard journey esp if you have an additional illness. Try to be kind to yourself and do things you enjoy if possible. I get pretty grumpy, getting outside for daily walks helps me. X
Glad you have found the group and hope it can be helpful to you.
I had second round of FEC-T 2 weeks ago and I also find I am usually quite emotional a week or so after. I have been working from home for the week after treatment and find the last day or 2 of that before I return to the office quite hard!! I’ve also been run down (doing too much I think) but had all clear from GP this morning as I thought I might have a chest infection. Hope it’s not making you too unwell and the antibiotics help!
Just found this forum and think it will be a great benefit to me. I am 34 years old and was diagnosed with tnbc on January 10th 2020. My treatment plan in 6-8 FEC-D chemo sessions followed by double mastectomy with reconstruction surgery. I am BRCA 1 positive so mastectomy was always part of the plan, cruelly my mastectomy date was scheduled for 31st Jan 2020. I just didn’t reach it cancer free.
I’ve had 2 rounds of chemo. I’m now on day 7 post 2nd round and am feeling sorry for myself. I currently have a chest infection (on meds for it) but have found myself to be very emotional just now. Anyone else emotional after chemo?
Thanks for reading ❤️
The last few days the pain seems to be easier and more manageable than it was thank you for asking.
I think it just makes u feel better to cope with everything if u can do something in your normal routine.
I never thought id miss work so much too !
Is your pain decreasing so that you can get out for a drive now? Sounds like progress anyway which is great 👍 news xx