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February 2020 Chemo Starters

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Re: February 2020 Chemo Starters

Sounds like we have a lot in common Artycart  🙂

 

I used to make a ton of jewellery, still have all the kit and would like to get back into it one day.  I mainly did chain maille, and other stuff with silver or copper wire.  I got really into etching and metal stamping at one point.

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(I uploaded these pics on my phone, apologies if they look huge on a computer screen!)

 

But nowadays mainly I paint (mostly acrylics with a lot of mixed media/collage stuff going on, and sometimes some embroidery in the mix)

 

I also make little books and comicsSLICED-9-COVER 800 (1).jpg

 

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Sorry for taking this thread rather off topic!!

 

All the very best to those of you still to have chemo #1, and I hope that those who have already taken that plunge aren't feeling too rough from it.

 

Sarah x

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Re: February 2020 Chemo Starters

Hello Implausible,

*waves back*
I am a jeweller but I also paint and do loads of other arts and crafts. I haven’t been offered anything other than cannulas and my hospital told me that is what they use. I will ask though as I’m having longer than most chemo. What type of painting do you do? I have done lots of water colour, some acrylics and I also love drawing with any medium. 

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Re: February 2020 Chemo Starters

Artycart - fellow dabbler in the arts here, *waves* 

 

One of the things I was really worried about before all this started was if my right hand wouldn't be so dextrous if I got lymphdoema, as I paint a lot of quite small, detailed things, and would be lost without it

 

Touch wood, so far, no problems.  Make sure you do all the arm exercises they give you after surgery.

 

What kind of art do you do?

 

Oh and if you have the option of a PICC line or portacath (I had the latter) rather than cannulas for the chemo, go for it, saves them having to fight for a vein each time 

 

 

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Re: February 2020 Chemo Starters

Aw you’re too old for my groups so don’t worry about missing out! I’ve got once for people under 50 and one under 40 but they let me sneak in!

 

Paclitaxel usually goes with Carboplatin but I had Docetaxel. You’ll only need Cape if you don’t get a good response to chemo and even then sometimes they only give it if nodes are involved too. The tablets really aren’t that bad it’s just a bit unpredictable how I’m going to be each day which is frustrating. Definitely go to Maggie’s there are loads of things there plus tea and cake!

 

If you are on Facebook there are a couple of TNBC groups but they have people who are stage 4 so it can be hard going sometimes. But you can ask anything at all there and you’ll get plenty of replies xx

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Re: February 2020 Chemo Starters

Ah that’s a shame. I will need to look for some groups in Aberdeen. I know Maggie’s Centre have BC group meetings and it’s a lovely calming place so will probably try that. Sorry to hear you’re having trouble with the chemo tablets and don’t feel too great. It’s to be expected I’ve been told. I think I will be getting those too after the two courses of chemo. First EC then Paclitaxel and... can’t remember the other drug. So far I’ve been told that they hadn’t seen anything in my nodes but at this point I’m not able to deal with all the detail of my situation. I’ve just turned 50 and found the lump while on holiday for my birthday in November. It’s quite large about 4.5cm and a mixture of DCIS and TNBC. I’ve had a bone scan and due to have a CT scan next week and those are the results I just don’t want to hear... I will be trying the cold cap tomorrow. Met a lovely lady yesterday who was using it and said it wasn’t too bad once she got past the first ten minutes and warned of icicles on your head afterwards! 
Thank you for the advice about the cannulas. I will try to stick to one arm and see how I go. I’m an artist and I’d like to keep my right arm fairly pain free if at all possible. Tracy 😉

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Re: February 2020 Chemo Starters

Aw you’re a fair way away, was hoping you could join my two groups in Edinburgh but it would be a trek! I’m ok, my stomach keeps objecting to my tablets and it’s worse the week I don’t take them! Can get a bit tired and down but I have a lot of other rubbish going on too so who knows which it’s down to.

 

Yes the first one is daunting. With FEC they have to push it into you in big syringes so you have nurses with you all the time. Are you doing cold cap and are you using a cannula or PICC? My veins were never great but having chemo has made them even worse! If you can take it I would recommend having it all in the same arm if there is any suggestion it’s in your nodes and you need a clearance. I now can only have blood taken from the bad side, nothing put in so no injections or cannulas for scans and no blood pressure. I got sore veins and decided to try to use both sides equally to give them a break, but now they’re both pretty rubbish which isn’t great when I need bloods tests every three weeks before my oral chemo! Was hopeful the chemo would wipe out the cancer in the lymph nodes but not to be.

 

I’m not sure what groups are up in Aberdeen. How old are you? xx

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Re: February 2020 Chemo Starters

Hi Edinbird,

I hadn’t twigged by your name but it makes a lot of sense now! I’m a wee bit south of Aberdeen. I was down in Edinburgh with my friend just about two weeks ago...love Edinburgh. How are you now? I’m have my first chemo tomorrow and I think I’m ready but still lots of unknowns at the moment x Artycart

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Re: February 2020 Chemo Starters

Artycart just reading through, where are you in Scotland? I’m in Edinburgh as you maybe can tell by my name! xx

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Re: February 2020 Chemo Starters

Thank you to all you lovely ladies who have posted your experience a year on .It is so helpful and makes this difficult time much easier knowing that there is light at the end of all of this.

Im having trouble sleeping and developed a cough which doesnt help . Had a chest xray but no told dr will let me know if any problems. Currently trying a vaporiser to see if helps.

 

Love 

Daisy x

 

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Re: February 2020 Chemo Starters

Its really weird seeing everyone post their stories a year on.  I had a therapeutic mammoplasty as my first surgery then a full axillary clearance and margin shaves after that as they found DCIS surrounding my tumour.  I think us Feb 19 girlies have been through every scenario between us so just ask away

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Re: February 2020 Chemo Starters

You could also enquire if a therapeutic mammoplasty would be option on the op front too when the time comes, just another option you could consider, they take it out and reshape boob, just wanted to let you know ❤️💕💕Shi xx

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Re: February 2020 Chemo Starters

Edinbird, I've never seen that photo of you with the cold cap on before, it's ace 😄

 

Hi Daisy D

 

I did exactly the same, got my long hair cut off a few days before starting chemo. They said it would make the cold cap work better (closer contact with the skin and follicles I guess?), and also I figured if it was going to fall out, I'd be less upset seeing short hairs fall than big clumps of long hair.

 

As it turned out I didn't much like the short hair cut, and so when I did give up on the cold cap and go bald, it wasn't that traumatic, as really I felt like I had already said goodbye to my hair when I had the preemptive haircut.

 

As for lumpectomy vs mastectomy, there are lots of factors in that decision. But one is down to the size of the lump and how big your boobies are. If it is a big lump and your boobs are not super big, they don't always have enough left to work with.... the position of the tumour matters too.

 

Because mine was biggish at 3cm my surgeon said she would have struggled if I had smaller boobs (I was a DD cup before the surgery, now I'm a C).

 

She still wasn't sure even going into surgery if she could successfully do a lumpectomy so i had to sign a thing saying if she couldn't I was happy for her to proceed to mastectomy straight away without waking me up to check and rescheduling for another time.

 

So the very first thing I did when I came round from the general anaesthetic was peek under my gown to see whether or not I still had a boob!!

 

In your case, given you don't yet know how much it will have shrunk by by the time you have finished chemo, I don't think it would be unreasonable of you to ask them to reassess after chemo is done to see if a lumpectomy could be an option.... or at least explain better why it isn't....

 

Sarah

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Re: February 2020 Chemo Starters

Hi all xx I started my chemo a year and a day ago so just before Implausibie. I’m triple negative so I had chemo first. 6 rounds of FEC-T. My lump was 15mm and I had two nodes involved from the start. I went to the doctor in October 2018 as my nipple had started behaving oddly and looking like a rolo when I lifted my arm! No one seemed very concerned (I’m 40 so they probably thought it was just lumpy boobs or a cyst). Anyway I persisted with them and got referred and then found out the lump was growing just because. I did cold cap and it worked well, thinned out on top and just wore baseball caps all summer. T put me into menopause for about 5 months which was the worst thing for me as I couldn’t sleep more than 2 hours at a time. T made me very achy and my legs didn’t really start working again until August. I had a lumpectomy where they found DCIS, still two nodes positive and a third of the lump still cancerous. So instead of moving onto rads and being done I had to go back for a re-excision and a clearance then rads and now I’m on Capecitabine, oral chemo. It’s not too bad it just messes with my stomach a lot. Got three months left of that so I went from expecting 7 months of treatment to ending up with 15 😞 but since triple negative stops me having any hormone treatments I’ll take whatever I can get. Including an aspirin trial hopefully (my veins were too messed up to get enough blood for a triple negative specific one boo).

 

I’ll post some pictures so you can see how the cold cap worked for me. I just had a sore head for about 10 mins and it was bearable after that.

 

Good luck everyone, it really feels a lifetime ago now but you can do it! I’m still on chemo but I was effectively cured in August 😊

 

Before chemo had my eyebrows done with semipermanent makeup and I never lost them!Before chemo had my eyebrows done with semipermanent makeup and I never lost them!

 

Cold capCold cap

 

Me last May with two chemos to goMe last May with two chemos to go

 

This was the worst the thinning gotThis was the worst the thinning got

 

A week after my last chemo in JuneA week after my last chemo in June

 

August just before op 2August just before op 2

 

Mid August and all the badly bits filled inMid August and all the badly bits filled in

 

Curly underneath! Where the cap didn’t reachCurly underneath! Where the cap didn’t reach

 

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Re: February 2020 Chemo Starters

Hi Susie b and implausible

Thank you so so much for all the information.  You have really helped me to keep my spirits up. Its so nice to hear that you are both doing so well.

Ive had my long hair cut today into short bob and donating my hair to the princess trust. I was relieved to get it cut before it falls out as i think that would upset me more.

Thank you implausible for sharing your experiences and lovely pictures and hope New york was fun you certainly look like you enjoy life and i love all the colours of yout hair too. 

I have also got a wig too if and when that times comes.

Thanks for advice regarding breaking down the chemo sessions. My daughter has made me a chart to tick each one off. 3 down 15 left to go ! 

Im keeping my fluid levels up and resting . 

Can i ask how long following the end of chemo did your surgery take place ? 

Also at the start did they say lumpectomy? I was just wondering as they seem pretty certain i would be a mastectomy i need even with chemo first. The tumour is 5.6cm x 4.8cm with 3 nodes . 

Thank you again so much you have both made me feel stronger and more in control today .

Love 

Daisy D xxxx

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Re: February 2020 Chemo Starters

Hi Daisy D

 

Firstly I hope that as time goes by and you tumour begins to shrink that the chest pain will begin to subside. Regarding scans being taken throughout your treatment that seems to vary between hospitals. In my case I had an ultra sound scan after the second chemo session which showed the tumour, which I named Gremlin, had shrunk and it had also started to feel spongey. I had 4 rounds of FEC prior to surgery, 4 rounds of TC after surgery. For me chemo wasn't too much of a problem. You'll find that as time goes on and you chat more with the others in your group that everyone is different in how their body reacts to chemo. The main thing is to check your temperature daily, keep your fluids up even if they taste awful, and get plenty of rest. My hospital is of the opinion that prevention is better than cure so I was given the best anti sickness drugs so never felt sick. As for surgery, I was terrified. The girls in my group, who'd already had surgery, were so supportive and assured me that surgery was easier than chemo. And it was. One minute I was being prepped for surgery, the next I was in the recovery room. I wasn't aware of when the aneasethic went in. As I had a lumpectomy and full ANC (anxcillary node clearance) I was admitted in the morning, surgery 11:30, back home eating fish and chips at 5:30 pm.  I didn't experience any pain. I'll ask if someone in our group can give you some information about MX. Something else I found helpful was to concentrate on each stage as it happened rather than thinking about what was to come next. So for now think about the chemo you are having. Divide everything into little chunks.

 

One of the girls in our group has written a piece for you all so hopefully you'll all gain something from that. We were and still are a very chatty group. We're all here for you. Be strong and stay strong. You can do this.

 

Susie B xx

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Re: February 2020 Chemo Starters

Hi to all the Feb 2020 ladies

 

I'm from the Feb 2019 group - and in fact today is the anniversary of my first chemo dose last year

I thought this would be an appropriate moment for me to pop on, wish you all well, tell you a little about how the last year has gone for me, and hopefully offer you all some reassurance about the months ahead

 

Reading through your posts so far I can see that you are exactly where we all were last year, worried sick, desperate for information, wondering if we would lose our hair or not 🙂 The last one feels trivial, in a way, but it SO isn't, it was all I thought about! 🙂

 

A quick summary of my circumstances, in case there are any of you similar, if so, if you have any questions at all, please do fire away.  And I'll pop back in here once in a while in case I can help with anything.

 

I was diagnosed a week before Christmas 2018, having found the (pretty big, 3cm) lump myself. I had recently lost nearly 5 stone in weight and the docs reckon it had been there for well over a year (I was 52 but hadn't yet been called for a mammogram), but my previously big fat boobs had hidden it 😕

 

I had a lumpectomy mid Jan, and then started chemo mid Feb - 3 x FEC then 3 x T, 3 week cycles.

 

I was nervous as hell, but it wasn't TOO bad - never had any nausea or throwing up, which was what I was dreading the most. The main side effects were fatigue, photosensitivity (I sometimes had to wear sunglasses to go out for a walk as the light really bothered me, but that was only with FEC and only for a couple of days per cycle), and the fact that all food except cheddar cheese tasted disgusting 🙂 I pretty much lived on cheese toasties for the whole 4.5 months (and consequently put back 3 and a half stone of the weight I'd only just lost!! - but I'm happy to report that I have since lost it all again)

 

All in all, in my experience it was more of a dragged out permanent feeling-pretty-rubbish-and-knackered thing than anything totally game changing, side effect wise. It does get you down though.

 

I went back to work from the 2nd cycle onwards, as I only got 8 weeks sick leave, and had used all that up with my surgery and first chemo cycle. So that added to the fatigue, but also gave me something to do and stopped me wallowing, so I don't think it was entirely a bad thing. Hopefully you have all got better sick provision at your jobs though! I did work from home in the middle week of each cycle though because that's the week when your immunity is most compromised, and I didn't want to catch any office lurgies.

 

I cold capped - but unfortunately for me it didn't really work, my hair thinned out to almost nothing and looked blinking awful, so at cycle 3 I decided to ditch the cap and shave my head. You know what? I didn't entirely hate it!!! 🙂

 

chemo_cold_cap.jpgchemo_bald_is_fun.jpg

 

I didn't bother with a wig, instead I bought a fake fringe with velcro on it, and stuck inside a little peaked cap, it looked really realistic, and it was much more comfortable/less hot and itchy than a wig. (I coloured it in myself with sharpie pens to match the colours I used to dye my hair, everyone thought it was real! You can obviously get them in more standard colours too 🙂 )

 

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This is what I looked like by the end, no eyelashes, hardly any brows, weird bum fluff starting to grow back on top. Not a pretty sight! But as Deano reassured you a week or so back, you honestly don't look a state like this for long, I promise 🙂 My lashes grew back really quick, brows still aren't as dark and full as they were before, but they are getting there. and hair grows back at a rate of knots!

 

chemo_end_of_chemo.jpglast chemo day!  I'm SO fat :)last chemo day! I'm SO fat 🙂

 

Here's me a few weeks ago - so about 7 and a half months after finishing chemo.

 

7.5 months after chemo: lashes, check, brows, check, hair, check :)7.5 months after chemo: lashes, check, brows, check, hair, check 🙂about 4 months after chemoabout 4 months after chemo


And this much shorter haired pic is from mid October (when I took myself off to New York for a week on my own to celebrate getting through it all 🙂 ) . So it has grown loads in just over 3 months.

 

I'm specifically sharing hair pics as I used to spend HOURS during chemo googling hair regrowth photos to see how quickly mine would grow back, and I'm sure it's on your minds too. Or am I the only horribly vain one?? 😄

 

I walked every day during chemo - as our Daisy Di (not to be confused with new Daisy D!) said, it really does help. Keep as active as you can. Don't eat as many cheese sandwiches as I did. Keep positive, keep smiling, keep taking your temperature, avoid germy people, and you'll be through this in no time!

 

As for recovery after chemo - it (and the radiotherapy after) did leave me feeling weak as a KITTEN, which was annoying as I had been a bit of a gym bunny before. Well I am now on a crusade to build my strength back up - and since last November (I had to wait until after my last bit of surgery in October 2019), I've been back at the gym on a real mission 🙂 I have lost all the weight I put on during chemo, with interest. And I feel really fit and strong.

 

I do weight training 3 times a week, and also aqua aerobics, swimming and zumba, and lots of walking. I've even signed up for 2 10k runs this year! (although I'll probably walk most of it both times 🙂 )

 

So when you get to the point that you feel utterly drained, and wonder if you will ever again have the energy to walk up a small hill, or stay up past 6pm, please be reassured, a year from now you could be feeling as good as, if not better than, you felt before all this started.

 

Sorry this was a long read, but I was always really inspired by the stories of people from the Feb 2018 thread (a year ahead of me) when I saw them signing up for the Race For Life and similar, and sharing pics of their hair growing back (again with the hair!) and stuff, so I wanted to give you ladies a similar little boost, if possible.

 

Lots of love and support, Sarah x

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Re: February 2020 Chemo Starters

Aloha Ladies,

I have been meaning to come on in and post and get involved in this wonderful support group, but i am terrible about time management and getting on her to respond.... but i am gonna try my best!!

i am new to this site and newly diagnosed with BC in December. Found lump myself. Had full mastectomy on Jan 2nd, and cancer had spread to lymphs and tumor was 7 cm!!!  i have a breast expander in place and will eventually be completing reconstruction. 

Needless to say i was told chemo & radiation will be inevitable.  I just had bone scan and CT scan last week as well as had a port put in my chest area last Tuesday. First chemo treatment started yesterday 2/17/20. Surprisingly i feel ok today, but i think it was due to all the anti-emetic medications they pump me with prior to chemo.  I will be have 8 cycle of AC every other week and 8 cycles of Taxol to follow. And radiation to follow that.  My oncologist said i will lose my hair likely by week 2, so i proactively chopped my hair off. My hair was down to my waist and i cut it to a short bob. Im hoping it will make it a less traumatic transition. (???) In fact, i may even buzz it once the majority starts to come out.  Any other suggestions?

i am so thankful to have a place to share my story with others who truly understand all the feelings of fear, of anxiety, of hope and of gratitude! Most of my blended family children are older and is out of house, (mostly- lol) but i still have a young 10yr old at home who has some special needs so it has been a difficult process for us. 

Anyway, thanks for listening. Heart

~JustMe2

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Re: February 2020 Chemo Starters

Thomaschix, sorry to hear you have gene that predisposes you to another form of cancer. I wanted to know so I could take additional preventative surgery if necessary and also to protect other family members if I did have the gene, it would have given them choices themselves then. Not everyone wants the test and that’s everyone’s individual choice, everyone has to do what’s right for them as it’s your journey and you always do what’s right for you ❤️❤️💕💕Shi xx

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Re: February 2020 Chemo Starters


@Shi wrote:

Thonaschix I got my results within a couple of months. Even though I was tnbc I did not have the brca gene. I know some others get tested for other gene too Along with brca gene, sorry I can’t remember what they are but you should be able to find out if you phone them number on here or ask the nurse or discuss with your team ❤️Hope this helps 💕💕Shi xx


Thanks Shi. I’ve been referred to genetics team so will see what they say. I already have a genetic mutation which predisposes me to another type of cancer (from my dad) so I’m on the teams books so to speak. I just want to know sooner rather than later in case it turns single mastectomy into double. Got a few months till need to cross that bridge tho.

thanks for letting me know your experience and glad it was a negative result for you! 

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Re: February 2020 Chemo Starters

Hi 

I have just had my 3rd weekly chemo today . All ok apart from chest pain ( tumour pressing on a nerve ) and shattered  Had  to also have a chest xray today as i developed a cough. Its driving me mad as disturbing sleep. Im currently trying a vaporiser to see if that helps. 

Does the ongologist review how chemo is going at different stages through the chemo

 

 

and is  this normally done via ct scan ? 

 Does anyone experience chest pain caused by tumour pressing on a nerve ?( The pain radiates from mid sternum across top of breast. That why i was orginally missed diagnosed with chostochondrotis  obviously not wishing any one any pain or discomfort )

Susie B 

How are you feeling now ? 

How did you cope with chemo and your surgery ? I really cant wait to get to the surgery to get all over.  Im a bit of a planner type of person and finding it  really difficult being in the house all the time at moment due to predominantly with the chest pain .

How long did u have to stay in hospital for your surgery and how long was the recovery ? 

The plan with me  i believe is chemo then mastectomy.  

 

Thank you for any information and support.

Sending you all lots of love and best wishes xx

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Re: February 2020 Chemo Starters

Thonaschix I got my results within a couple of months. Even though I was tnbc I did not have the brca gene. I know some others get tested for other gene too Along with brca gene, sorry I can’t remember what they are but you should be able to find out if you phone them number on here or ask the nurse or discuss with your team ❤️Hope this helps 💕💕Shi xx

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Re: February 2020 Chemo Starters

I've seen that a couple of you have been diagnosed with TNBC. I was diagnosed with bc in Dec 18, started chemo in Feb 19, followed by surgery, lumpectomy and ANC, more chemo (I was on a trial), followed by radiotherapy which ended last November. Like mini mad I'm happy to answer any questions, offer any advice or give any kind of general support. I was diagnosed just 2 days after my 62nd birthday ☹. 

 

Wishing you all the best, Susie B xx

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Re: February 2020 Chemo Starters

How long do you have to wait for your BRCA result artycat? I’m planning to ask for it as both me and my mum have now had bc at a young age

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Re: February 2020 Chemo Starters

Hi Shi,

I was offered the BRCA test right away and am waiting for results. It seems to be routine here in My area if Scotland as they Automatically took bloods then asked if I wanted to be tested. Xx T

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Re: February 2020 Chemo Starters

Tnbc’s don’t know if you’ve been offered brca testing by your trusts or if you even want them, I know some on the threads who’ve had to fight to get given the test. Just wanted to mention so you’ve options ❤️Sending ❤️💕💕Shi xx

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Re: February 2020 Chemo Starters

 

 

 Thank you - I had a phone call earlier to ask me come in tomorrow at 1.00pm.   I will be glad to have the first session under my belt.  

I hope I'll be as relaxed tomorrow night.  

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Re: February 2020 Chemo Starters


@Carisma wrote:

I had previously posted in the January surgery thread but then I forgot my password and even trying to think what it could be seemed like too much of an effort Smiley Embarassed.  However, I am now starting FEC T chemo on Tuesday 19 Feb so was motivated to remember, as there is a wealth of info and support available on these threads.

 

I am apprehensive but, possibly stupidly, not too anxious at this stage.  I am not cold capping, for various reasons, so debating whether or not I should cut my hair shorter now (it's pretty short anyway) or just wait until it falls out.  I would consider whether to even bother with a wig, and just make do with hats/scarves if it wasn't for my daughter's wedding right at the end of my chemo treatment.

 

I just want to start it now as the sooner its started the sooner it is done.  

 

 


@carisma Hope it goes ok for you tomorrow x

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Re: February 2020 Chemo Starters

Hi Daisy,

I had just turned 50 in November so hadn’t had any routine mammograms either. Tnbc seems to affect people at a younger age so it’s a shame we don’t get mammograms starting earlier in life. I don’t have much pain apart from occasional little stabbing pains. I will get a wig as everyone has told me how amazing they are nowadays but will also wear hats etc. I have been told I will have two courses of chemo to begin with of 12 weeks each - every three weeks and I will be undergoing treatment for about a year including surgery and possible chemo tablets etc. It’s so strange how you do just get on with it though. Good luck with your chemo tomorrow and keep us updated how you are getting on xxx

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Re: February 2020 Chemo Starters

Hi Tracy 

Im glad you have got your husband to sit with you as although its not painful it does help if u have some one to chat to pass the time. 

My children are doing ok just wish they didnt have the worry ive got a son 15  and daughter 18  whos due to go to university in Sept . My daughter has been to chemo sessions with me .

I totally understand the shock as it was much the same for me . I was told by numerous consultant that my pain was chostocondrotis and the mamogram was only done to rule everything out . ( im 48 so not been called for mamogram before).so was not expecting to be facing this. The pain is what causes me the most difficulty as i cant be independent like normal. The tumour is pressing  on nerve in my chest. So hopefully the chemo will start to work and shrink it so they can operate.  

Although i havent lost my hair as yet it has become very dry. I have been this morning to be fitted for a wig. I find the thought of losing my hair very difficult but i was surprised how realistic the wigs are. My son didnt even notice it was a wig when i got home as i tried to get on that looked like my own hair .

My next chemo is tomorrow which will be my 3rd one.  

Best wishes

Daisy 

 

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Re: February 2020 Chemo Starters

Hi Daisy,

My husband is off work so he will take me but I’m hoping once I know what to expect that I will drive myself. I was first seen at the beginning of December and told after MRI that I had DCIS which was pre cancerous. A week later they said it was TNBC and had the oncologist waiting outside the door. Quite a shock after being told it would just need surgery. My lump is quite big so that scares me too because it has been there for quite a while and I didn’t notice. I’ve just found out my chemo starts this Friday. It will be good to know something is happening at last and hope that it shrinks the tumour so I can have surgery.

Thank you for the advice! How are you children coping? Mine have left home but they are both finding it tough I think. 
Best wishes xx Tracy

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Re: February 2020 Chemo Starters

Fab...thanks ShiHeartSmiley Very Happy

Sx

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Re: February 2020 Chemo Starters

Hi Daisy D,

 

i had my mastectomy first then the chemo.

i had 12 weekly Paclitaxel and Carboplatin every 3 weeks again for 12 weeks.

if i can offer any advice or answer any questions please ask.

good luck n stay strong..  mini mad xx 💖💖

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Re: February 2020 Chemo Starters

Hi Tracey

Thanks for replying . Its all so scary isnt it. I feel like its all happening to someone else . The chemo so far is going ok. Ive had a few issues but feel that it was a reaction to  a fentanyl pain medication  patch rather than the chemo.  ( im getting chest pain due to tunour pressing on a node . I was misdiagnosed for 3 months as having chostocondrotis, )

My chemo is on a weekly basis at present  on Tuesdays. The side effects i have had are stomach cramps and sore throat. 

Take something to keep you occupied as there is a lot of pre med drugs  prior to chemotherapy drugs . I have taken a blanket too as sometimes feel that if can have a bit of a nap it passes time.

The chemo nurses are very good and will address any issues  or worries that you have.

I am prone to migraines so i asked for a strong anti sickness med. So far i havent experience any headache or nausea.  I have felt tired following chemo and need to rest.  I find this very difficult as ive got 2 children and im usually being mum taxi ! 

Do you have someone to support you to your appt ? 

Best wishes and lots of love 

Daisy xxx

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Re: February 2020 Chemo Starters

Hi Daisy D,

ive also been diagnosed with triple negative and will be going straight to chemo starting this week. They have said i will be having EC every three weeks with possibly something else too but they haven’t told me a lot more than that!

I feel like this bit is so scary because everything is so unknown. How are you finding the chemo so far? Best wishes

Tracy xx

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Re: February 2020 Chemo Starters

Hi Mini mad

I have been diagnosed with triple negative breast cancer too. .Are u having chemo first then surgery ? . I started on weekly pacitaxel with every 3 week carboplatin.  Then it  changes to EC.  Just wondered if your regime was similar to mine. 

My 3rd chemo is on Tuesday 

Lots of best wishes 

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Re: February 2020 Chemo Starters

Thanks for telling me like it is... will brace myself! Thanks, Daisydi

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Re: February 2020 Chemo Starters

Hi Fe2020 sorry to say it is cold.  In fact you do get icicles on your head but they soon thaw out.  A small price to pay and all that ...

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Re: February 2020 Chemo Starters

Hi for hair growth After you’ve finished chemo and rads, lush shampoo bar that looks like a red dot think it was called new. Sunny isle extra dark Jamaican black castor oil (rub in scalp leave for hour) then shampoo off (even when you’ve no hair if you don’t cold cap) I’ve known others get great results with fast and planteur39. But all after chemo and rads, don’t want anything interacting with treatments ❤️ Just a quick one while I remember when you start to get your tiny hairs back on your face you can look like a little fluffy duck, don’t be tempted to immac off, it soon settles and is ok. Eyebrows and lashes were back within few weeks all ok too, just remember as soon as the lashes start to grow back, get that mascara on it helps train the new lashes to curl ❤️💕💕Shi xx

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Re: February 2020 Chemo Starters

Hair today 16th Feb.Hair today 16th Feb.

 

Hair in Oct 19Hair in Oct 19

Crap selfies but this is the difference in hair growth. I was on a trial which involved 4 rounds of FEC, which caused some significant hair loss and ended in April, lumpectomy and ANC, 4 rounds of TC followed by 20 sessions of radiotherapy. I didn't lose any hair with TC which I completed mid Sept. Don't lose heart any of you if you do lose it it will grow back, promise.

 

Susie B xx

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Re: February 2020 Chemo Starters

Thanks, Daisydi

appreciate your kind advice so quick. I do hear make sure it’s pulled down and fitted properly! Have lined up for a weave for extensions. They say after a 30% loss so will see when that is... 

how do you manage with the cold cap? Is it cold all during session? Said it will b a long first treatment as they will monitor how I respond to each drug... Happy to hear you didn’t lose all your hair!!! Good for you x

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Re: February 2020 Chemo Starters

Hi Ju72

 

I'm from the February 19 group, the same as Daisydi. Regarding a thermometer I bought a digital one from my local chemist that gives you an immediate reading after putting it in your ear. They are more reliable than the ones you place in your mouth and inexpensive. Remember if you need to take paracetamol for pain relief check your temperature beforehand as it can reduce your temperature. As for the cold cap, definitely persevere with it. I did lose around 50% to 60% of my hair but that was preferable to losing it all. I did have a couple of wigs that I wore when I went out partly because of the bald patches and partly because I didn't want to out out with grey hair. A year on my hair is thick and chemo curly. I've had some coloured highlites put in and hoping my hairdresser will give me a full all over colour next week. I love the sound of your wig 😊. Have fun with it and wear it.

 

Susie B xx

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Re: February 2020 Chemo Starters

Hi 

I'm at long last about to start my chemo at the end of feb 🤞. I'm going to try the cold cap , as the thought of losing my hair is upsetting. But if it happens then it happens. I've already got a funky wig to wear , purple and turquoise its very loud . Haha 

Just wondered if anyone could recommend a reliable thermometer ? 

It's great reading everyones positive comments gives me hope for when my treatment starts. 😶

 

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Re: February 2020 Chemo Starters

Hi Vas 

Might be a silly question (not knowing your age/circumstances) but could it be related to your time of the month? I had first chemo on 30th Jan and my boobs are sooooo sore but definitely related to time of the month for me

just a thought?!

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Re: February 2020 Chemo Starters

Hi all I had my first chemo on 4th feb and I am experiencing pain in my breasts. And I am having this thought that it is spreading Smiley Sad

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Re: February 2020 Chemo Starters

Hi fe2020 as I mentioned earlier I started chemo this time last year.  I think each department vary in their approach to the cold cap but my chemo nurses dampened my hair and applied conditioner before each cap went on.  My hair was thick and I did lose some but probably kept about 60% but I could not bear the prospect of being bald and was really stressy about it.  Make sure the cap is pulled down tight especially on the crown which is the most common area to thin out, also take a hair band to protect your forehead. I also had some long layers put in my shoulder length hair but Im not sure if that really made any difference. I was provided with a wig but it is still in its bag as I never used it.  Good luck x

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Re: February 2020 Chemo Starters

Hi Carol and all February 2020 group,

 

Hello. My first post as I join the Feb2020 club. What a roller coaster! Have my first of chemo FEC-T this week. Agree, having hot flashes already so nothing new!

 
Lots of reading as desperate to know as much as possible before I start. Having found lump end November, diagnosed in December, surgery delayed 4 hours before on the day as secondary area suspected and lymph node sent for biopsy. Tested positive which lead to CT scan, bone scan - panic while while awaiting results but finally diagnosis complete. Surgery (mastectomy and reconstructive) in January and now chemo to start with 6 cycles followed by radiation.

 

Any tips on how to prepare and wear freeze cap? Do you wet your hair prior? My hair v thick! 

Appreciate all the past and present posts to help during this time of uncharted waters! As others have said, I worry more for those closest who are impacted just as much. Very strange to have to go through all this medical treatment while feeling fine. It has slowed me down mentally / professionally as I step back from work and I do worry a lot, not sleeping  through the night as long but otherwise I don’t feel physically sick. Hope to be more physical with walks and yoga and slowing down enough to enjoy every day so much more.

First chemo this week. Acutely  sensitive to anything going on within! If only we had listened a bit more earlier you think you may have caught it earlier.

 

Wishing each and everyone the strength and positive energy as we journey through this disease 💖 I take much strength from medicine today which has taken the fear out of diagnosis. If anything, it has given me much empathy and made me a kinder person. Thanks to all who share during this time and since to offer wors of advice and experience  💕

 

 

 

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Re: February 2020 Chemo Starters

Hi Carisma

i don’t think it’s stupid not to be anxious. The more positive you can be the better (although that’s easier said than done at times!)

Hope it all goes smoothly for you on Tuesday and that the side effects following are minimal!

 

xx

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Re: February 2020 Chemo Starters

I had previously posted in the January surgery thread but then I forgot my password and even trying to think what it could be seemed like too much of an effort Smiley Embarassed.  However, I am now starting FEC T chemo on Tuesday 19 Feb so was motivated to remember, as there is a wealth of info and support available on these threads.

 

I am apprehensive but, possibly stupidly, not too anxious at this stage.  I am not cold capping, for various reasons, so debating whether or not I should cut my hair shorter now (it's pretty short anyway) or just wait until it falls out.  I would consider whether to even bother with a wig, and just make do with hats/scarves if it wasn't for my daughter's wedding right at the end of my chemo treatment.

 

I just want to start it now as the sooner its started the sooner it is done.  

 

 

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Re: February 2020 Chemo Starters

Hi Sara,

I have to admit that now my hair is short I like it so much I’m going to be even more sad when it starts thinning! And you’re right...people will have to tell you it looks great. The poor hairdresser was more upset about cutting it off than I was. I just want to get on with the chemo now and feel like something is being done to stop things getting worse than they already are. Good luck with your cut on Friday and with everything else to come xxx T

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Re: February 2020 Chemo Starters

Hi Artycart, I am getting there thank you.  I had 3xFEC and 3x Docetaxol followed by 20 radiotherapy sessions and I am now on Anastrazole as my bc was hormone positive and I am just about to start zolendronic acid infusions to try and keep my bones safe.  The new hair that has grown is rocking little curls but at least it is growing.  Its all doable but challenging.  I walked my dogs most days even during chemo and I really think that did help.  I used to drive home after chemo, wash all the conditioner off my hair and then take the dogs out ...