October 2019 chemo starters

[Purpletrunks]

Evening!

@jasmine I had the injections. They prick slightly but dont hurt as long as you plunge very slowly. I really hated doing it though. And I had side effects, but I'm generally sensitive to medication. 

I am due on this week and have had a tiny bit of spotting but consistency and volume are different. I'm watching for a few days before getting it checked out. 41, so expecting medical menopause. 

Two trips to the chemo helpline this week. Sat because I had a uti and then a sore throat.. they discovered I was severly neutrapenic.. 0.09!! That was terrifying, but all has been fine. Weds I was back in because I have a red rash appear.. they weren't too worried but I was thrilled that my nutrafil were already back up to 0.7. So still neutrapenic but going in the right direction!!

This week I have been to yoga at Maggie's and today I managed 10 minutes kickboxing... that's a result as I'm still pretty weak!!! My husband owns a martial arts club and we have decided to start a free weekly 'kick cancer' session for anyone affected by cancer. It's very good for physical and mental health and it's really hard to find aerobic excersise that's suitable for cancer patients. Idea is to let those whosoever ones have cancer come too. No doubt ( one of my professions is a fundraising consultsnt) I will squeeze some fundraising off the back of it too... maybe a kickathon of some sorts. 

Anyway, this is my 'good' week before round two next week. So I'm trying to do normal things! 

Oh and my head hair is coming out now...

Xxx

[ClaireL]

I've gone the other way I think. I'm expecting mine any day but no sign yet. I have bloods tomorrow so will mention it then. 

Good luck for the head shave tomorrow!! 

Claire x

[KathCurtis]

Sorry AJ i am post menopause so haven’t paid any attention to this issue! Hope you have a good oncology nurse you can ask?

kath

x

[Cherryp]

I think I read somewhere that they can be affected and that some in between spotting is possible. Bleeding and bruising is a possible side effect though so probably best to check with your hotline. 

[ajatron23]

Hi all

random question-has anyone else’s periods been affected? I am not due and was expecting everything to stop but I seem to be evidencing there start of something?! Sorry if this is tmi xx

[jasmine1897]

Thank you Kath.

glad you got it looked at and good news about the port (I have heard good things) 

that’s good about the injections, my mum was hoping she could do them herself 💪 

hope everyone is keeping strong x

[KathCurtis]

Hi all

so pleased things went well for your mum Jasmine 🎉.

 I had the injections for 3 days and they were fine. Very easy to do yourself too, which was a relief. 
saw a nurse today who thinks my arm has phlebitis as a reaction to Taxil in the vein. Going to look into having a port.

love to all

Kath

x

[jasmine1897]

Hi Kath,

The lorazepam worked well so she was able to have treatment yesterday (herceptin and docetaxol). We were in from 9-5pm with monitoring as it was her first one. She slept mostly and felt fine. Bit of heartburn when she got home but think that was the roll she had laying down! 
slightly bloody nose today and altered taste to water etc but other than that successful first treatment. We got given the injections to start on Sunday - what’s everyone’s exp with these? (Sorry can’t remember what they’re called but they’re for white blood cell count)

Kath does your arm feel hot? I would ring the unit just to make sure it’s not the start of an infection or something, I’m sure it’s fine but it’s best to double check. 

x

[Cherryp]

Looks like on the whole everyone is doing OK this month. Hoping I can report the same next week. 

Does anyone take baked goods into the ward with them? First session tomorrow and needing some distraction so thought making up  batch of ginger oaty crunch might be good. Don't want to leave it all at home though as then I'll eat it all! 

Think I'm all set to get started. Had an Echo today to baseline my heart as epirubicin has previous when it comes to heart damage. Yikes! At least they found one and it seems it's pumping fine. 

[aj72]

Just a quick note to remind anyone with concerns (no matter how small) to contact their unit.

One of my side effects (and I have been very lucky) has been a dry/tickly throat and cough which is 100% worse at night leading to separate bedrooms, aching ribs and many sleepless nights. My unit were great advising throat lozenges and lots of water. Sadly this didn't help

much. 

I visited my GP on Tuesday simply to get my chest checked for my own peace of mind. My chest was clear however as a precaution he prescribed antibiotics and asked that I update my unit.  This I did and they asked I pop in just to get checked out. So bloods were taken and it turned out that on Day 17 I was neutropenic even though I felt absolutely fine  (other than the damn cough) and didn’t have a chest infection.  Antibiotics (as a precaution) and cough linctus prescribed.  As I felt okay and had no other symptoms I was allowed to go home on the understanding I returned the following day for further blood tests. This I did yesterday afternoon and again returned home. I received a call later that evening to say my bloods were ‘going the right way’ and ‘not to worry’. 

Hoping all should be good for bloods tomorrow then Round 2 on Monday 🤞🏻🤞🏻 

Moral of the story is that you may feel okay on the outside but be vigilant of what’s going on on the inside. 

On a lighter note, my hair is starting to ‘thin’ out but luckily being blonde I’ve lots to spare.  Trying to wash, dry and brush hair lightly so as not to turn up bald to my head shave tomorrow evening - that would be embarrassing 🤣🤣

Take care and stay well ladies 💋

[KathCurtis]

How is your mum Jasmine?

And how is everyone else doing?

 I am feeling pretty good today- 6 days after first chemo (sadly next one is tomorrow). But where canular was attached i have a very painful red patch under the skin on my arm from wrist to elbow. It feels kind of bruised. Someone told me that a nerve might have been damaged when canular was put in . Anyone else had this?

[jasmine1897]

So pleased you haven’t had nausea! Hopefully it stays that way for you, good luck for Friday it’ll soon be another one ticked off x

[KathCurtis]

The Calm App is a good one! Only one treatment down, next one Friday. But no nausea and only a bit “knocked out” so quite a good start. Long may it last. Let us know how your mum does tomorrow! 
x

[jasmine1897]

Hi Kath,

thank you for the reply, brilliant advice as I actually mentioned the ‘calm’ app and I do believe it helps. I think as it’s the first proper treatment fear of the unknown always surfaces. 

how far are you into your chemo journey? Hope everything is going well x 

[KathCurtis]

Sorry to hear about your mum Jasmine. Unfortunately it isn’t anything I have come across (still very new to chemo myself) but I do know stress and worry won’t help bring the heart rate down. I guess you can only try to calm and reassure her - has she tried any meditation apps? 
Really sorry if this feels flimsy advice, i do feel for you both 

kath

x

[jasmine1897]

Hi everyone,

I hope Tuesday is treating you well.

after my mums initial dose of Pertuzumab yesterday, today’s dose of docetaxel & Herceptin was due. Unfortunately due to her heart rate being too high and not enough time to lower it we got sent home and told to come back tomorrow. Has anyone had this happen before? She’s got lorazepam to take in the morn before to hopefully bring the heart rate down. Tests were done and heart is okay but they obviously don’t want to take any risks due to Herceptin's risks. I think she’s worried it won’t go down and she won’t be able to have the treatment. 

hopefully more to report on her first cycle tomorrow 🙂 x 

[Shi]

That’s why we did August, we had all done and got some nice coverage on the bonces 👍the ladies who cold capped were back to lush locks by then too ❤️ Don’t bother with the ritz, they said they couldn’t accommodate us at any time. Fwaahhh fwwaahhh so we went to the Arch, had our own room with beautiful afternoon tea our own waiters and the room had separate bit with sofa too so we had more natter after and a dance too one of the ladies took her speaker for her phone and did a play list - oct17 we had a tune a day on our thread. Whatever you do it’s just lovely when you meet up ❤️❤️💕💕✨✨shi xx

[KathCurtis]

Yes I see what you mean. And the thought of really being at the complete end of the process is so appealing !

---

@Purpletrunks wrote:

Actually, although may seems ages off, it is nice to have a point in time to think about when this is all over. 

I agree that finishing chemo is something to be celebrated, but my surgeon indicated there would be as small a window as possible before lumpectomy, so getting this small window lined up sounds tricky 

---

[Purpletrunks]

London's cool with me. Easy to get to and I'm often up there for work. 

[Purpletrunks]

Actually, although may seems ages off, it is nice to have a point in time to think about when this is all over. 

I agree that finishing chemo is something to be celebrated, but my surgeon indicated there would be as small a window as possible before lumpectomy, so getting this small window lined up sounds tricky 

[KathCurtis]

Thanks Shi, good to have a realistic goal. So maybe that will be May.

x

[Shi]

We were all done ops rads etc by about the May after starting chemo in the Oct and we had our meet up in the August just to give you bit of idea for timings. We had an apartment and all stayed together too, bit like a school trip again it was brilliant 👍 and planning it kept us focusing too ❤️💕💕✨✨shi xx

[KathCurtis]

Lovely, but I would also happily travel if we find we have a few of us in one spot. Anyone finishing chemo later than March?

 I have my tick chart now up on the fridge. One down and seems like hundreds to go! 

Love to all

kath

[aj72]

I’ve had my surgery. Chemo should be done by March then radio. I’m Lincolnshire but happy to travel to the big smoke as trains are direct x 

Amanda 

[ClaireL]

Hey,

Not entire sure of timescales but should be done around Feb time I think. 

I'm in Hertfordshire (Stevenage).

Claire x

[KathCurtis]

Hi Lou

yes I will also have surgery and radiotherapy after chemo, but just getting the chemo done is probably worth marking. I am North/Central London based.

kath

x

[Purpletrunks]

I finish chemo in Jan, if no delays. But then have surgery and radio. I havent been given timescales for these but could probably find out. 

Where do you all live... I'm gloucestershire

[KathCurtis]

That’s a great idea Shia. I wonder when we are all done? End of February for me!

kath

x

[Shi]

The beautiful friendships 👭you are all making on here as you 🥊🥊👭👭💪💪💪through are another thing you never expect from this but it is something beautiful that comes from something that isn’t meant to be beautiful ❤️Get your get together planned for when you’ve all finished your treatments. Us oct17 had weekend in London and a 5star afternoon tea at The Arch, it’s was beautiful to be able to hug finally and just have a special treat that we looked forward to ❤️❤️💕💕✨✨shi xx

[aj72]

I know what you mean Lou.  I’m now not wasting any energy on shaving!!!!   If however I still have bear legs over the winter I won’t be happy 😂😂

[smclaire]

Hi positivelou😊 thanks, yes the kindness and love takes me over the edge sometimes , just makes me realise more the amount of pain I’m putting people through. But I need to be like you today and put my positive pants back on and get on with it ! I know I’m luckier than many others and your treatment plan sounds like you’re already climbing Everest!! So big hugs for that ! I’ll take a look at the Facebook forum . I don’t know if others have seen this on the Macmillan forum this morning but I thought I’d post it here too. It’s a free mastectomy bra from Stella McCartney 

https://stellamccartneycares.org/shop/mastectomy-bra

have a good day all xxx

[Purpletrunks]

My husband, who has perfect timing at knowing the bits he can laugh about, and the bits he cant, says I need some kind of tiny Hoover constantly stored about my person, so that I can quickly suck up any stray piles of body hair that fall out in public. This image makes me giggle so much I'm generally okay about the baldness that's looming. 

Although if my underarm/upper lip hair doesnt fall out too... I'm going directly to the European court of human rights. 

[aj72]

OMG Purpletrunks. I thought it was just me.  Wasn’t expecting to lose ‘other’ hair before the stuff on my head 😱 🤣🤣🤣

I’m  shaving my head on Friday night so I’m now gingerly washing my hair and hoping I don’t lose any (or too much before then) 🤣🤣🤣

[Purpletrunks]

Hi smclaire  

Sorry you find yourself here but as you do, it's good to have you 'onboard'. I'm with you about feeling like this will never end. I've had a full on treatment plan from the get-go. 6 FEC-T, 12 months herceptin/pertuzumab, surgery, radio, then 10 years hormone tablets. PositiveLou has a plan to have climbed to the top of the UK's 4 highest peaks by next xmas, and then to conquer an international peak in 2021. But, on low days I worry that this will never end, more things will be found, and i will be constantly on treatment until it finally spreads. It is a rollercoaster indeed. Yesterday morning I could hardly raise a smile, nothing felt worth it. But today I'm off to the park for a coffee and leg stretch. 

@Kath that's a lovely way of putting it about the warm feelings. It's so true, the out pouring of love and kindness has really touched me too. Although sometimes I find it overwhelming because I'm like '**bleep**, this must be serious', or the realisation hits that I'm THAT person, the one with cancer that everyone rallies round! But, I totally agree with you that the beauty in this nightmare is feeling the warmth of humankind. Even though, cocooned in love as I am, I do feel desperately lonely too at times. As much as they care they can all go 'home' and I cant. 

@smclaire, are you on the younger womens breast cancer board thing on facebook? There are lots of positive stories shared from women who are in similar positions to yours.

Much love to you all,

PositiveLou ( LowLou has done one today 😊)

[smclaire]

Ah thanks Kath , yes I’m so lucky I have a wonderful network of friends and family and I’ve really felt positive up to now. I think it’s the whole chemo thing that’s making it so real And stirring up my emotions . I’m so pleased to hear you’ve found positivity in this awful chapter , good luck with your treatments xxx

[KathCurtis]

Hello smclaire

This sure is a rollercoaster for the emotions and the dips are horrible. I totally get the fear, had lots of that, and the grief. When you love the life you have it’s tough to see it change in this way. This may not register right now but honestly I am finding that just as much as cancer is sharpening negative feelings it is massively intensifying positive feelings of love, warmth and joy in family and friendship. Hope you can find a shoulder to cry on - a few tears and a big hug seems to move those feelings along!

love

kath

[smclaire]

Thank you Claire, I’ve been reading all the posts on the forum throughout and it’s such a great support network! I’m trying to just keep really positive in front of my family because I don’t want to worry them but every now and again I have a mini breakdown 😢. I’ll pick myself up , get out for a good walk and face the next step in this journey on Thursday with the support of all you wonderful people who I know are feeling exactly the same ❤️ Good luck for all your treatments xx

[ClaireL]

Hi smclaire,

I completely understand where you're coming from. The fear is always there. Even when you feel it's a good day. But it does change and you will get through this. We are all here for any rants at any time but also to celebrate our wins. 

On one of my bad days last week, a story from one of our other ladies about getting up and out for the first time in a week made me smile so much, it brightened my day. I was so pleased for her. It's a community and we will pull you through with us on this bumpy road x

[smclaire]

Hi all, I’m having a picc line in on Wednesday and due to start 4 cycles of EC on Thursday . I was diagnosed with IDC in July and had a mastectomy in August. Initially oncologist didn’t think I’d need chemo but Oncotype score said otherwise. I’ve been really positive up to now but the last few days I’ve been obsessed with the fact that this is never going away and I feel really low. I’m 45 happily married with 2 gorgeous children and I’m just really scared 😟 x

[Purpletrunks]

Ah, sorry I hadn't clocked you have  port. I dont have pic or port, dont know why but I'm going to ask. 

Nope, no greasiness here. But my body hair is starting to come out 😳 going to have to make sure I wear trousers with elasticated ankles to catch it all 😂😂😂😂😂😂 

[ClaireL]

Oooh they look cool! No, mine is under my skin along my collarbone and into a vein by my heart. they couldn't guide it in the normal way and instead went through my neck. My vein is not happy. 

Anyone else having insanely greasy hair and skin? I'm trying not to wash it too much but it's bugging me. 

[Purpletrunks]

This is what I mean.

.https://www.boldbeanies.com/products/womens-picc-line-sleeve-cleo-pink

[Purpletrunks]

I had chemo 11 days ago so I'm in prime neutrapenic territory. Last night the dr said they worry less about viral colds, its bacterial infections that can be more serious. So, fingers crossed your cold comes and goes with no added dramas.

❤❤

[Purpletrunks]

That's horrid not to sleep ClaireL, can you buy some kind of sleeve to keep it safe and in place? I dont have a line so dont know if that's even a thing.

Thanks for your kind words. I have been overwhelmingly surprised at the support and I love I have recieved from friends but still seem to feel so lonely. 

Xx

[ajatron23]

I think that’s exactly how I feel about my line! I swear I can feel it at night more!!

[ajatron23]

Hi purpletrunks

When did you have treatment? They thought I couldn’t possibly be neutropenic as that usually kicks in after 10 days or so. 

sorry you’re feeling so crappy. I have got the family cold so taking my temperatures every hour. Convincing myself I’m fine 🙂 

im glad it’s not just me then. I dread going to bed as I always feel more anxious then. I don’t really know why. 

keep smiling. We will all get through it xx

[ClaireL]

Take care and rest my lovely. Keep in touch with your unit and be as glum here as you need to. I really hope you feel better soon. Although I know that's almost a ridiculous thing to say at the moment. 

Thinking of you and keeping everything crossed the extra bugs go away soon. Sounds like a horrendous night for you. 

Nothing new here just not sleeping well because of my port. Keep thinking it's going to move or do me in. The way the crazy brain works at these times huh. 

Xxx

[Purpletrunks]

Hi folks, 

How are we all this weekend? Lots of love to the lady who just had chemo and slept for 17 hours! 

I have had a crappy few days. Feels like a new drama every day and my mood is dropping daily. Friday I was diagnosed with a uti, then yesterday my throat got sore and a gland popped up. So I spent the evening in the chemo helpline unit. They were crazy busy with several ambulance admissions and one poor woman screaming for ages whilst they tried and failed to get a catheter in. It was horrid.

Eventually I was sent home as they thought it was safer at home. I'm severely neutrapenic with levels of just 0.09. My throat hurts to swallow and my temples are pounding. But I dont have a temp so gotta keep a sharp eye on that.

Just cant stop crying. Went for a lovely walk in the woods yesterday with a good friend, but fear I over did it and brought on the sore throat. 

Sorry for the glum post.

[Shi]

Don’t forget to book your look good feel better sessions through your local Macmillan centres 😘💕💕✨✨shi xx

[mini mad]

Hi,

hope you dont mind me jumping in from the June 2019 chemo starters 🙂

you mentioned temperatures.   I was told to take my temperature first thing in the morning every morning,  which i did and also kept a record of the readings.  This way you will see what your average body temperature is and will know if it begins to climb.

i had my chemo over 12 weeks and i didnt end up in hospital at all 👍👍

keep those eyes open !! 😳😳  good luck..
mini mad  xx 💖💖