March 2016 chemotherapy starters?

[daffodil]

Thanks for the advise Shelley. Hope you are able to have your next op soon. xx

[Shelly212]

Hi All,

Recently found website nad joined Feb 2016 chemo thread but started on 29th Feb so jumped to this one too (now that I am getting used to how to use the site!).

Fantastic support from everyone and great to share experiences and learning.

I had a mastectomy for TNBC in January and jsut had sentinal nodes remove, all clear, and am 3 weeks post chemo having had 3 x EC and 9 x Taxol, only at the end did I loose most of my eyenrows and lashes but have  ressured on this site that they grow back quite quickly.

Totally agree with ROsie re exercises post-op and I do have a ful range of movemnt. My issue is I have a tissue expander in to prepare for reconstruction and it's moved so until chemo finished 'fills' had to stop and can now have surgery tomorrow as blood count now up! It's also causing my left arm to swell slightly so hoping this resolves post-op!

I bought a soft post surgical bra from M&S in black and another in nude. Initially had to add on expander hooks (£5 from M&S for a pack of 3 in white, nude and black). I use soft prosthesis so I can remove some of the filling after the expander has been topped up and no one has noticed one is 'fake'.

My nails are really discoloured but none of come off yet - hoping they dn't but my other issue is 'numb' feet which again I hope will resolve.

Wishing everyone all the good luck and kindness in the world!

x

[daffodil]

Congrats warcol. Hope your last one is not too bad. I had my op on Thursday. So far it is ok, pain not too bad and im doing the arm exercises. Aileen x

[Warcol]

Hi everyone had results from scan today and there's no sign of cancer so I will have last chemo on Monday and then op in 4 weeks time followed by rads!
Deffo see the light at the end of the tunnel! Hugs to everyone else who is still on treatment or coming to the end like me! We are all pink warriors xxx

[lettie]

Well, final chemo was last Friday. I'm not suffering side effects as bad as previous treatments......maybe that's all to do with my state of mind, knowing I'm done! Radium starts in two weeks for 4 weeks. Thank God it's almost over for me, I'll be back at work in a few weeks and I'll hopefully put all of this behind me. To each and every one of you who have offered support and advice her, or like me just read everyone else's, I wish you the very best of luck with the rest of your journey and hope we all come out the other end with the results we want. Roll on 2017, I can't see the back of 2016 quickly  enough!!!  Over and out, Lettie xxxx

[cjrd]

Well, a week after my final chemo treatment I was once again admitted into hospital - neutrophils had dropped to zero and continuing problems with mouth. Having lost all my finger nails my toe nails are starting to fall off. I am now waiting to hear when my raiotherapy will start - this will be a drag as I will have to make a daily round trip of 120 miles! Hope all is going okay for everyone else.

[RosieFlower]

Hi Warcol.

I think it was gentle exercises until drain was out at about Day 10 post op, and then i think at my 3 week follow up the BC nurse reassured me that i wouldn't do any damage by 'pushing' myself with the exercises, but to do no more than 3 sets a day. Good luck, but remember to take the painkillers reg. I took paracetamol and brufen daily for the first 2-3 weeks, then dropped down to brufen only and was able to come off them by week 5. Oh and the exercise where you walk your hands up the wall in front of you and to the side of you,(which are the exercises to do after drain is removed)  i felt was the best with stretching.

Rosie xx

[Lucy Lu]

Hi Helen good to hear it us your last one tomorrow. It is my last one next Tuesday. I can't wait for this part of the treatment to be over. Hope everything goes well for you and the side effects are not too bad xxx

[Loolyboo]

Hi Helen
Love your upbeat post just now 💕
I too am having my last chemo tomorrow - we are v similar, I'm her2+ too, had lumpectomy and lymph clearance in Feb (all clear) and will start rads between 3 to 6wks from tomorrow.
Hope all goes well on your last treatment, my champagne will be going on ice v soon as I'm sure yours will be too! 🍾 xxx

[helen1971]

Afternoon ladies.

Last Chemo for me tomorrow and I can't wait. Not looking forward to the side effects but at least this is the last time.

Had WLE and SNB in February. Nodes all clear but didn't get clear margins on lumpectomy so im scheduled for mastectomy and immediate reconstruction on 11th August.

Also have to continue with herceptin injections every 3 weeks for 12 mths as my cancer was HER2+.

I'm sure tomorrow will be very emotional in many ways but won't be able to say goodbye to the chemo nurses just yet.

Hope everyone is copying wherever you are in your journey.

Helen xx

[Warcol]

Hi rosie

thanks for this, with 2 small ones I want to recover quickly so I will do the exercises like u and do as I'm told xx

[daffodil]

Hi rosie, Thank you so much for your story and suggestions. Just what i needed. Good luck with the rest of your chemo. Aileen x

[RosieFlower]

Hi Aileen and Warcol.

Hope you don't mind just popped in from June thread, to give you my experience of surgery which was 10 weeks ago tomorrow.   I've just had my first FEC 2 weeks ago, but had a double mastectomy, left axillary clearance (2 nodes affected out of the 21 taken) and a right SNB. Felt i was attacked from all angles, but as long as you stay on top of the pain and do the exercises religiously it will be ok. I left hospital 2 days post op with paracetamol! but requested brufen from my GP and took 600mg 3 times daily, even if i wasn't in pain, to help with the exercises i did 3 times a day - morning, afternoon and before bed.

I won't lie the raising of the arms is a killer, and for me it felt like there was a lot of sticky tape inside my armpit and felt like a ripping or tearing sensation every time i started the exercises, but i would say by 6-7 weeks post op I had full range movement. I had what i thought was cording on my left arm, which reached as far as my wrist but now completely gone.

Scars were initially tight and for about 2-3 weeks post op, and felt i had a clamp around my chest or an iron bra on! and again that feeling went as soon as my arms became more moveable. They will give you a leaflet on arm exercies, and i also found Tai Chi exercises on YouTube which helped loosen the tight scar tissue feeling and encouraged better movement of the shoulder. I also took Vitamin C and arnica for about a week or so after op and continue to take Vit C now. I guess the most important thing for you both will be to get your strenght back before op to cope with op, but hope the above reassures you slightly - the exercises are tough but i was encouraged by BC nurse to 'push' myself when doing them, but not to do more than 3 sets in a day. Good luck. Rosie x ps I still do the exercises daily, but maybe only once or at the most twice a day, and have got no restricted movement. x

[Jembossable]

Well I had full lymph removal and mastectomy before chemo. I am due to have a reconstruction the beginning of next year. It's really not as bad as you may think. I've had a prosthetic since January and I'm used to it now. No one has ever noticed or mentioned anything and I'm glad I had the operation to be honest. I'm sure you'll be fine ladies. Good luck and stay strong xx

[SusieQ]

Confirmed with surgeon mastectomy with full lymph removal. I'm not having any reconstruction as I do not want anything to hold up the next stage (probably radiotherapy). Spent sometime with BCN who showed lots of prosthesis - different textures, shapes etc. Loads of booklets etc. showing underwear which I have to say I was quite impressed with. I am really worried about the lymphs, but just hoping all this chemo will have zap anything there. Just have to stay positive and focus in getting rid and getting back some control. 💐 Good luck ladies xx

[daffodil]

Hi amylou and jénjen. Thanks for your replies. I'm just hoping for some good news lymph node op stories as the surgery threads arē full of the worst case scenarios. Getting very nervous!

Aileen x

[Amylou]

Hi guys just reading your posts about mastectomy and lymphnodes..... Thought I'd share. I had mastectomy with lymphnode sample (5 removed all clear) post op I had 'cording' of the lymph system which basically restricted my movement. Did my exercises but had to have physio input to get movement back. Took quite a few weeks to recover. But things did get back to normal. I'm still awaiting a date for more surgery, had chest wall recurrence so I'm having a WLE followed by rads. Xx

[JenJen]

Hi Aileen
There arent monthly threads for ops but there is a surgery section with lots of threada. Most ladies stick with their chemo thread for chat and moral support and pop into the surgery section for specific questions then move onto rads threads which are monthly. You can discuss your op in the surgery section or continue to chat to your friends in here as they are the ladies that got you through it and some will be going through surgery at the same time as you

Jen x

[daffodil]

Hi Susie - Hopefully its just the chemo se's. i found the doxytaxel left me feeling down for a few days in the week after it. I wonder which thread we are supposed to transfer to now for our op. Do they have monthly threads for ops?

Positive hugs to everyone still having chemo.

Aileen x

[Warcol]

Hi ladies
I'm due either WLE or mastectomy and full lymph removal in mid august or beg of sept subject to my scan on 12th July! They've also only Concentrated on size of tumour and id be interested to hear off others who have had full Lymph removal! Feeling pretty crap after 2nd T especially with oral thrush! Chemo sucks 😪

[SusieQ]

Hi Aileen, not feeling too bad just very emotional and irrational thoughts. I'm also worried about the lymph nodes - they've not really been talked about till now. The interest has always been on the size of the tumour and how much it's shrunk. I would also be interested to hear from anyone whose gone through similar op (mastectomy and lymphs)
Good luck for the 14th July. Loads of positive hugs 💐💐❤️Xx

[daffodil]

Hi susie.

Hope your side effects have improved and you are feeling ok.

I am having lumpectomy and lymph nodes removed on 14th July and am really worried about the lymph nodes as there seem to be so many potential issues. Anyone had lymph nodes removed already who can let me know how it was for them?

Aileen x

[Flopsy]

Hi SusieQ,

Sorry to hear that it is going to be a mastectomy and lymphs removal. After going through chemo it seems unfair to now be presented with that.

I've just had my first T&H combo (after 3 FEC) and have an appointment in August to discuss surgery. Having SE's now. I'm behind you.

It seems like we face one challenge at a time but over and over again. Sending hugs to you.

[SusieQ]

I suppose I should be writing on another board, but I've been on this one since March and I'm finding the next stage scary. I had my meeting with my surgeon no two ways it's got to be a mastectomy and lymphs removal. I have a reconstruction appointment to discuss the options there so I appear to have some control back there. Certainly had highs and lows this week it's not helping s/e from last session kicking in making me emotional and not coping. Hoping next week I'll see things a bit clearer and cope better.  So sorry ladies to be down and gloomy,😢

[Loolyboo]

Hi Susie
Your last post has really lifted my spirits 😊 Bye bye chemo & picc line & hello having energy, tasting food & of course summer tops .. bring it on! 💪

[SusieQ]

Hi Loolyboo,
My PICC line was removed and I feel quite liberated lol!! Can't wait to comfortably wear short sleeves. At the moment I'm feel wired 🎉 long may it continue. Saying goodbye to the chemo nurses was a really strange feeling.
Good luck for your last session next week. 💐

[Loolyboo]

Hi Sue
That's great news, I have my last T on Wed next week 😊 I'm with you being emotional, lasts around 10days but hey - this will be the last time!
I had surgery before chemo and having 20 sessions of rads starting Aug - I'm looking forward to picc removal & hair regrowth too, I have a little now but it's just a covering on fine blonde hair, weird!
Best wishes for today 💕

[SusieQ]

Yay, Last chemo 3rd T today (bloods permitting). 

Appointment on Thursday with surgeon to discuss next plan of action. Hopefully s/e won't have kicked in by then and I won't be over emotional and have brain fog!!

im still breathless. Normally that goes as I come into my 'good' days, just hope it doesn't get any worse this time round.

looking forward to PICC being removed (but not today I'm told) and hair growth.

[Jembossable]

Well Uti has had me admitted. Hoping to get home today, lots of needles and iv antibiotics first. Fingers crossed this is short lived x

[Warcol]

Hi lynniepinns
That's exactly what's happened to me in T and can resonate with the cabin fever of a small room! Have they reduced your dose as I'm having a reduced dose Monday to try and stop me from becoming neutropenic xx

[Lynniepinns]

Hi All, 

thanks for thoughts, hospital is an hour away so it's a big thing to go and get bloods checked.  I went in and again had zero neutrophils so kept in, that's 2 out of 2 T having me on iv antibiotics.  I think I shall just book a taxi for 3 weeks time in preparation!!!  Was really hard to get released this time as not in oncology ward as only elderly ward had bed, first time I have had to discuss bowel motions before being allowed home so glad the haematology registrar rescued me.  I still find it so difficult to obey rules when I feel well but just have a temp then get trapped in a room for 48 hours because of it, makes me go a bit stir crazy.  

Dear cjrd really hoping you find something to help with the pain of the fingernail loss, I am being very gentle with mine as even though I painted them black they are painful so I may need tips on care after the next T.  Really hoping you get through the rest of treatment more easily xx

love to all xxx

[Warcol]

Hi

oral thrush is vile and only just recovering now. As for high temp I echo jem's comment don't leave it I ended up with sepsis within a matter of hours xx Colista 

[Jembossable]

High temp needs seeing to straight away. Please don't leave it. X

[daffodil]

Hi crjd - Oral thrush is horrible - I am also suffering at the mo. Sorry to hear about your nails.

Hi Lynniepins - Hope you are ok. Did you have to go in to A&E in the end? I have honestly stopped taking my temperature unless I feel really unwell as it so often seemed to result in an unneccessary trip to A&E.

Good luck to everyone still having side effects - maybe see you on the Rads threads. Hoping the surgery and rads are going to be a breeze compared with the chemo we have just all been through.

Aileen x

[cjrd]

Hi Daffodil,

Thank you for your thoughts. Well I had my final chemo yesterday and it was fine. After my recent hospital stay I had nearly two weeks of mouth-free issues but oral thrush suddenly reappeared on Sunday evening nearly four weeks after previous treatment. All my fingernails on my right hand have popped off and nails of left hand are ready to go - this is very debilitating. District Nurse has just been to give an injection of Neulasta and I have an appointment with a consultant next Thursday to discuss radiotherapy. Best wishes to all. X

[Lynniepinns]

Anyone not gone to hospital when temperature hits 38?   Have phoned them but wondering how urgent it is. With school pick ups, child and parent care to get arranged?   Will be going but wondered if it could be left for a few hours/ tomorrow and see if temp goes down???  Waiting for a call back 

[daffodil]

warcol - hope your last ones fly by and you don't suffer as much as before.

jembossable - You are quite right and most of the time i stay positive. As i am comīng to the end of chemo and less focussed on getting through it i seem to have more time to think about the future which isn't always good. Have to stay positive though as there is no point wasting time worrying.

I am finding the side effects of this one easier - think it is because i know it is the last time. Hope everyone else going through it right now is ok and others are enjoying a good week or recovering well after their last one.

Aileen x

[Warcol]

Hi daffodil
No date for surgery as don't finish chemo till 18th august as having 8 opposed to 6!!! Feels never ending!!

[Jembossable]

I think we all worry about a recurrence. It's only natural. Fingers crossed the brutal treatment we've all just gone through is enough.xx

[daffodil]

Hi Warcol. You are the same as me. Surgery and rads after. Have you got a date for your surgery yet? Mine is planned for 14th July. I am also triple negative and cant decide whether i am relieved at no more treatment after rads or concerned that there is nothing else they can give us to fight a recurrence. Axx

[Warcol]

I'm triple negative so after rads I will just have to suck it and see!
Yeah sudacream is brilliant! Xx

[Loolyboo]

Oh no! & at a time we don't really want to lose weight 😩
Yes, I had a lumpectomy & lymph node clearance with clear margins/no node involvement 6wks before starting chemo and will be having 20 sessions of radio starting early Aug - I am also her2 positive so having 18 injections x 3wkly too.
Btw, I'm using my sons Sudocrem which I wld highly recommend for a sore bottom, as if we don't have enough to deal with pfffft! 🙊 xxx

[Warcol]

Hi Loolyboo
Yes I have the injections as well but again they don't cause me any issues fortunately! I also inject clexane as I have a blood clot courtesy of 4 X FEC!! The T has also given me the runs so everything going in comes out straight away! Great for the diet but makes me feel rubbish xx have u had surgery first? Or are u having it after? I'm having it after plus rads xxx

[Loolyboo]

Hi Colista
Ontop of the 3 FEC I have 3 T too - I'm with you on the mouth issues it's terrible, everything is super dry & has a chemical taste 😩
Gosh you're having 4 sessions, hope the reduced dose is much kinder to you - do you have the filgrastim injections? 💕

[Warcol]

Hi loolyboo
I'm due second T on 27th June and praying it's better than the last! 2 weeks post T I still have no taste buds and I hate the film that is permanently in my mouth! I didn't suffer with aches thank god but was more tired than on FEC! How many T are u having, I'm due 4! Although they are reducing the dose slightly as I ended up with sepsis after first one xx Colista xx

[Loolyboo]

Hi
It's been really quiet on here, hoping that's a good sign that everyone is getting on with things with little side effects, plus I'm aware that a few have us have finished chemo now 😊
I'm 6days into my second T and have found it a little more difficult than the last one, bone aches from the filgrastim injections are proving doubly painful plus having to nap in the afternoon 💤 what's that about? feel like an old lady! 🤗
My hair has started to grow back, albeit it v blonde and fluffy but it's a welcome start! Big hugs to everyone 💕

[Lynniepinns]

Hi Aileen, I had lumpectomy but only testing of lymph nodes removed did not have a full clearance and was pretty much fine with a sports bra  with normal painkillers after a couple of days.  For me the issue was getting over the anesthetic.  Hope all goes well, the chemo has definitely been far worse than the op xxxx

[daffodil]

"the picc line' not 'the epic ine'!

[daffodil]

Hi crjd. Sorry you are suffering. Hope the delay is not too long. xx

[daffodil]

Hi all.

Very happy to say i had my last chemo today as well and have had th epic ine removed (which was very quick and painless). Thank you to everyone for your posts and tips. This forum has really helped me through the last few months. Not looking forward to next week but at least it is the last time which should help.

After this i have my operation (lumpectomy and lymph node removal) in the middle of july and then radiation in august. Quick question please to anyone who has had a similar operation already. We are due to go to scotland 8 days after my operation. Do you think i will be recovered enough? How long were you in bed and in pain for?

Thanks very much,

Aileen x