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February 2020 Chemo Starters

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Re: February 2020 Chemo Starters

Hi Caead,

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

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Re: February 2020 Chemo Starters

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 

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Re: February 2020 Chemo Starters

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. 

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Re: February 2020 Chemo Starters

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 💖
T x

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Re: February 2020 Chemo Starters

Thank you Sara. Hope you have had a good day 

Love Daisy xxx

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Re: February 2020 Chemo Starters

Sorry to hear that Daisy🙁....sending ❤

Sara x

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Re: February 2020 Chemo Starters

Hi 

White blood count to low today so no chemotherapy for me today. 

Feel fed up today 

Love to you all

DAISY XXXX

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Re: February 2020 Chemo Starters

Hi Everyone 

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 

Daisy xxxx

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Re: February 2020 Chemo Starters

Clinic nurse said same to me re:coronavirus. Take same precautions as rest unless otherwise told

x

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Re: February 2020 Chemo Starters

Really useful info re coronavirus....I've been trying to find out for days biut nobody seems to know! Thanks Vornsta! x

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Re: February 2020 Chemo Starters

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 

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Re: February 2020 Chemo Starters

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. 

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Re: February 2020 Chemo Starters

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

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Re: February 2020 Chemo Starters

Evening 

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 .

Love 

Daisy xx

 

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Re: February 2020 Chemo Starters

Evening all

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?!?!

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Re: February 2020 Chemo Starters

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

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Re: February 2020 Chemo Starters

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

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Re: February 2020 Chemo Starters

hello, 

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

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Re: February 2020 Chemo Starters

Hi Mousey,
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?

Tracy x

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Re: February 2020 Chemo Starters

Hi Mousey 

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

 

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Re: February 2020 Chemo Starters

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

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Re: February 2020 Chemo Starters

Hi Mousey

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!

 

xx

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Re: February 2020 Chemo Starters

Hi,

 

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 ❤️

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Re: February 2020 Chemo Starters

That’s very good to hear Daisy. Hope that is a sign that the chemo is doing it’s job xx

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Re: February 2020 Chemo Starters

Hi Tracy

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 ! 

Xxxxx

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Re: February 2020 Chemo Starters

Hi Daisy,

Is your pain decreasing so that you can get out for a drive now? Sounds like progress anyway which is great 👍 news xx

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Re: February 2020 Chemo Starters

Thank you so much shefgirl will give it a try .

Lovely picture Tracy

Hope all ok with everyone

Ive managed to get out in my car today which has  been great as ive not been able to drive since xmas due to the chest pain. It felt so good just not to rely on anyone and feel a bit more like me xxx

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Re: February 2020 Chemo Starters

Hi Daisy

Someone suggested Loratine anti histimine for the joint pain caused by the injections? I tried for first time today and had helped with pain in my leg. Think Clarityn is the brand name. 

Hope it helps xx 

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Re: February 2020 Chemo Starters

34FBCF75-5685-41D2-8203-89EB890DB543.jpegphoto I took on my dog walk this week. Getting out in the countryside and fresh air is a bit like meditating for me especially on a day like this one was xx

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Re: February 2020 Chemo Starters

Hi  Tracy

Glad ur are doing ok and a walk.on the beach seems a lovely idea. So relaxing just to walk with the dog always makes me feel brighter too.

Had chemo today. Went ok just feel so shattered today   hopefully will get some energy back tomorrow 

Yes i think im the same with the night sweats. Just  so uncomfortable. 

Hope everyone is doing ok today 

Love Daisy xxxx

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Re: February 2020 Chemo Starters

Thanks Vornsta 

Im 48 so would be approaching the menopause but would have liked to do it not in fast forward !! I  sleep with windows open and a fan but still wake up like ive had a shower. Has anyone tried any complementary therapies  or any other ideas greatly received 

Love 

Daisy xxxx

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Re: February 2020 Chemo Starters

Hi, I’m having a few night sweats too Daisy but I’m peri menopausal so chemo might just be making it worse for me. Got out for some fresh air today on the beach with the dog and other half which was nice as I’m feeling much better just now xx 

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Re: February 2020 Chemo Starters

Good luck for tomorrow Daisy. No night sweats for me but I am post menopausal. I think if you are pre menop chemo can cause temporary hormonal changes like menopause or for some post menop people bring back those symptoms. Hope that settles, not nice xxx

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Re: February 2020 Chemo Starters

Any body experiencing night sweats ???? Every night waking up soaking .

Love 

Daisy xxx

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Re: February 2020 Chemo Starters

Good luck to  you all having treatment this week.

I went for ongologist appt today and tp carry on with current regime  with ct scan to be done in April.

Treatment number 5 tomorrow  

Love Daisy xx

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Re: February 2020 Chemo Starters

Hi Vorns,

I’ve had a little bit of a runny nose but also a dry cough. I’m wondering if maybe be it’s pollen causing the runny nose as the cherry trees here are starting to come to life. I’m with you on the journey from Constipation to Diarrhoea lol 😂 and back again! This is is my middle week of my three weeks between chemo and it’s starting to show how long this road is going to be as I have twelve weeks of EC then twelve weeks of paclitaxel and carboplatin. As everyone has said just need to tick them off I guess. Hope everyone is doing ok today xx Tracy

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Re: February 2020 Chemo Starters

A bit of a runny nose yes. When I was in the unit last week there was a man that said the same and the nurse said that could be because of the loss of nose hair. Lovely! I have more of an acid stomach this time but that could be because of my yeast intolerance and not behaving myself. 😝

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Re: February 2020 Chemo Starters

Anyone else got a runny nose and sneezes? I don't think it’s a cold as all clear and I feel well. Constipation turned into diarrhoea now - joy! How is everyone else? Vorns xxx

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Re: February 2020 Chemo Starters

Hi Vorns

Thank you 

I will give the mashmallow root  tea a try . Ive got some gaviscon and lansoprazole that im trying too to see if it that helps .

Love Daisy xx

 

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Re: February 2020 Chemo Starters

Thats great news Tracy about your Bone scan. Glad ur feeling more Human 

Love 

Daisy xxxx 

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Re: February 2020 Chemo Starters

Hi Tracy, that is great news re scan and that you are feeling ok xx

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Re: February 2020 Chemo Starters

Hi Daisy, I have a bit of oesophagitis since chemo, not actually reflux. Marshmallow root tea seems to help me with this. You can buy antacids for reflux  and docs can prescribe stronger ones if needed. Vorns x

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Re: February 2020 Chemo Starters

Hi everyone,

I hope you are all doing ok on your treatment and coping with the cold and wet weather 🌧! I’m not due to see the oncologist again until after my third cycle of EC so that’s not until mid April. The onc nurse said I would also be having mammograms and MRI scan again I suppose to check if there has been any response to the chemo. I asked my BCN this week if she could tell me any results from my bone scan as it was playing on my mind a lot due to having a lot of joint pain which I’d had since before I even knew about the BC. Very relieved to be told it was clear apart from wear and tear.
One week on from my first ec I’m feeling a lot more human though still get tired. Had a listen to some podcasts and amazed at the variety! Tracy xx

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Re: February 2020 Chemo Starters

Morning 

Its nice to see the sun instead of the rain ! Hope everyone is doing ok . Im just experiencing light headedness / joint pain.  Has anyone experienced acid reflux too from chemo  or filgrastim injections ? I tried last night to have injections on an evening to see if that helped with joint pain 

Thanks for the info Sara . 

Hope everyones treatment goes well this week and keep plodding on this Road back to normality Asap. 

Love 

Daisy xx

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Re: February 2020 Chemo Starters

Morning all

 

The sun is shining here...looks like spring might finally be on it's way 🌞. I had 1st appointment with oncologist after round 1 of chemo, they check weight and ask about side effects to see how you're managing, Although he wasn't able to give me immediate solutions to side effects he was able to reassure me that they were "normal" (whatever that means😁). Sending love to all going through chemo💕

 

Sara x

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Re: February 2020 Chemo Starters

Hi daisy 

Same with me also as of now I have finished 2 cycles and I have an appointment with onco after 3rd cycle only. Don’t know what to expect from that appointment 

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Re: February 2020 Chemo Starters

Hi caead

Thank you so much for sharing your info. Its so helpful to know what other people are experiencing too. Hope you are recovering well from your surgery . 

Wishing you all the best 

Love Daisy xxx

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Re: February 2020 Chemo Starters

Hi Daisy D I had my first oncology appointment since starting treatment on Monday it only took about 5 minutes. Don’t know if it will be the same for you. My treatment isn’t to shrink anything as I have had surgery already. It was basically to ask me how I had managed and as there were no issues they would do the same without changing anything. There weren’t bloods or anything for me either so it was relying on me to report back. I now don’t see oncologist again for six weeks but see oncology nurse in between. Guess each hospital may be different don’t know what others have experienced. I am on a three week cycle. I know you have already had 3 treatments so it may be different.
I haven’t seen my BCN since treatment started (except in the corridor). They said that they handover to oncology but are always there if anything is needed luckily they are just across the corridor. If I got an infection at the surgery site then I might go back to them. I think once oncology have finished they may then pass you back to BCN for surgery. I know at my hospital they have Multi discipline team meetings each week to talk about cases that cross over. 

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Re: February 2020 Chemo Starters

Hi

Hope everyone is doing ok. Ive got my appt with oncologist on monday. This will be the first one since started chemo  treatment. 

I will be due my 4 session on Tuesday.

Just wondered what to expect at this oncology appt as i havent had any scans or anything as yet ??? Is it to earlier yet to tell any progress. This is what increases my anxiety levels. 

Has anyone had any complementary therapy input ? I was referred when treatment started but still no date as yet. I also havent had any contact with the BCN since i started chemo 5 weeks ago .would any complementary therapies help with night sweats as these are hard to manage and disturb sleep making it harder to focus in thr day time. 

Many Thanks 

Daisy xx

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Re: February 2020 Chemo Starters

Thank you sara. It is tough to manage but its supportive to know that we are not alone.

Ive managed to get out today for an hour to take my dog to the groomers. It was so nice to do something normal ! 

Shes an old English sheepdog but is sulking now as hates having a wash! 

I am currently administered filgrastim injections and experiencing joint pain in my knees and behind my shoulder blades. Ive taken paracetamol following a temp check which was fine. I am also using a heat bag. Does anyone have any other suggestions to try to ease the bone pain? 

Thanks 

Daisy xxx