May 2017 chemo starters

[Trisha69]

Was trying send a smiley face and couldnt delete it.  Am good watching a silly film on Netflix called Nine Lives, bit of light humour before bedx

[treehouse]

Wolfee well done for the picc line. I felt for you, I know the idea gives me the wibbles. Very brave ladies stronger than we think we are.
Really should give your self credit today.
At the risk of sounding hippy dippy clappy circle , maybe we should all think about our ' strong 💪 ' moments and celebrate those. This journey is changing us all.....and some ways stronger and more resilient.
feel free to tell me to shut up 😉

[Mai7]

Trisha, you have a "warning emotional content" but it doesn't open up. Is that buggy software or are you feeling emotional?

[Trisha69]

I wear like a tubi grip thing all the time. But its not elasticated. Stops me catching the dangly bit on bedding or clothes. Glad it went well for you 🙂

[Mai7]

WolfEE, glad your PICC line fitting went well - you must be relieved it's done now. I'm having goodie bag envy again, I was supposed to get Movicol last time after Oncologist agreed to prescription then when I got home with my goodie bag, all excited about easy pooping medicine I found there was none in there, must have been overlooked. I'll ask again tomorrow. Or as its a laxative, maybe it slipped through the bottom of the bag! ☹️ 💩 😂

[treehouse]

Thanks Wolfee.
And Mai you had me howling out loud, my son asked what was funny. 😂

[Mai7]

Treehouse, yes, I have to admit I felt a slight spring in my step as I left the hospital as I was beginning to wonder if the chemo was doing enough. I think you just have to have a bit of patience! The programme I'm on is pretty standard FEC-T which is prescribed as either 3+3 or 4+4.  I suspect (I may be wrong) the FEC is given as a systemic treatment as I have lymph node involvement and FEC is used to treat multiple cancer types. The Docetaxol, I think (again I may be wrong) is given as a very effective breast cancer treatment. Also, they don't know why some tumours respond better to one than the other and there is a clinical trial called ROSCO underway to conclude just that (I found it too late to join but met the criteria).   They may also use two different cycles to avoid the tumour becoming resistant to the same drug.  As I'm HER2- they don't give Herceptin as that's for HER2+ and I think Tamoxifen for the Oestrogen positive (ER+) is given afterwards as the side effects clash (probably clotting risk). presumably the chemo puts the ovaries into hibernate mode anyway. I wasn't given a Progestogen receptor status so can only assume neutral/negative. If you was in a clinical trial they would presumably have to ask for permission, so your cocktail should have been tried and tested for your Bc type. So no worrying, and remember your lump disappeared so they must be doing something right!  Sorry, that was a long answer, I bet you wish you hadn't asked now! Hello...... Hello.....Wake up....... 😂

[WolfEE]

Rosie, I think the genetics will take so long because from testing about 10 or more years ago I already know that I'm not BRACA positive but back then that was all they really tested for and to continue they needed a living relative but there wasn't one (I am now the living relative) the braca test doesn't take so long but other genes take longer they are still not sure they will be able to identify it??

Mai, sooooooooo glad your responding so well and all that shrinking xxx

Treehouse, I can understand your anxiety over having 2 her dressed up and party weddings and things if you can get yourself out I'm sure it will do you and your confidence wonders. X

So picc Line is in the procedure wasn't as bad as I'd imagined it to be but it has been put in low down she said that's just the way my vein was and it needed to be so it catches on my crease of arm but on Friday they will change the dressing and try make it a bit more comfortable. At the moment I'm not so bothered I'm still just happy and relived that it's in I had been so worried about it.

MKJ, do you cover your picc at night?

Misyangel. Movicoll is my new best friend I love it.

anniej, I really hope the flush goes ok on Thursday, easier said than done but try and not think about it until Thursday enjoy and we will all keep eveything crossed for you. Xxxxx

[Trisha69]

Wonderful news !!!  🙂

[treehouse]

Fantastic news about lump shrinking and going squishy Mai. That must make your day. So why does treatment change halfway? I feel so out of your loop.
Do you think they are using me as a guinea pig 🐹 ?
It is nice to feel special but I do wonder sometimes 😉

[treehouse]

They ask about my hands a lot!!! So far no problem I am still sewing 😊. The steroids help me feel good for first 3 days but it does mean 1 more sleepless night.

[Mai7]

AnnieA, you are doing well, just rest all you need and you will bounce back again. X

Treehouse, the steroids on the day before chemo are for all of the taxane/taxol treatments but the FEC just has steroids for two days after treatment and none the day before. My Oncologist said sickness is less common on the Docetaxol so may not need anti-nausea pills and so don't get the sickness pill to take an hour before like with FEC.  He said with the Docetaxol you have to keep an eye on hand and foot numbness and the dose has to be reduced if this gets bad as it can leave permanent damage. **Gasp**

[treehouse]

That is interesting. I just assumed you all had steroids before treatment like me. What were you getting on fec?

[AnnieA]

EC round 3 went well, appointments so much quicker when not using the cold cap. Been sent home with my usual goodie bag but with extra steroids to take before my next round which changes to taxotere.
I read a lot about ladies going to oncologist appointments, I haven't seen mine since he gave me my treatment plan 😕 have seen my surgeon though so maybe that's the way it goes for me having had my chemo first.
Feeling slightly wiped out so I'm having a rest in bed ready for the 5 - 6 days ahead.
Hope everyone is well x

[treehouse]

Ooh I just got an email saying that someone pulled out of a look good session and I was first on reserve list.
20th July. Looking forward to it, just hope I am well enough after next treatment.
I also have a work do and wedding coming up. I feel so crappy for a whole week after treatment I am scared to make plans and get my hopes up. 😒

[Mai7]

.......oh, another thing, I forgot to mention. My eyebrows have thinned slightly on the outer ends and the best product I have found for patching/repairing with discretion is Rimmel "brow this way" I've used dark brown and bought it on Amazon. 👁

[Mai7]

Glad to hear everyone is slowly back on the up again. Keep on keeping on ladies. 💗

I had had my Oncology appointment this morning and all good to go for FEC no.4 tomorrow. Good news, my lump has shrunk by about a half centimetre (from 4.9 to 4.3) and is slowly getting softer. It started out like volcanic rock, then softened to bone and now like thick rubber! My Oncologist told me my goodie bag would have steroids in ready for chemo no.5 which is the Docetaxol. Yikes! 

Anniej, I bought some Aveeno, as recommended by your good self. It's the one with almond oil and smells amazing - I just wanted to eat it! It feels really nice on the skin and no parabens! Yay!

AnnieA, hope today went well.

WolfEE, hope you are feeling a bit better in la derrière! I still have a bit of soreness and have to keep it managed constantly. Ugh! 

[Rosie65]

Thanks Trish, throat is a lot better today. Hope yours is too. Will definitely ask for something stronger from onc next time. Although throwing everything at it does seem to have shortened the agony.

WolfEE - hope all has gone well today. Six months seems a long time for genetic results. Where was it done? I got mine in 7 weeks. I'm the same with insurance, have contacted genetics before but for personal reasons at that time my sister did not want to be tested and surgeon would not remove healthy breasts without knowing I had gene. Maybe could have paid privately, but all too late now!!! Sort of thing I dwell on when I wake at 4am

Hope onc appt ok Mai - will be thinking of you tomorrow

Have got some Manuka honey but don't really like it - think I'm starting to associate it with chemo

[Trisha69]

Hi  Anniej

My neutros were 0.5 on Saturday, 1 on Monday and 1.3 on Tuesday.  Think 1 is the magic number.  Thinking of you x

[treehouse]

Good to hear from you Annie. Are you at home or still in hosp?
Manuka has been my go to since I started. I have 6 in the cupboard as everyone brings them as gifts 😁 🍯

[misyangel]

Wolfee really feel your pain it was like glass for me on last chemo but this time I had a movecall drink each night before bed and that has made it a lot better this time. Hope you start to feel better soon

[Anniej]

Hi everyone, still nesting and trying to get the neutrophils above 1. Dreading Thursday when I need a line flush after what happened last week. We do seem to be a poorly lot this week , don't we? Thank goodness for the access to prescribed medicines, by the sound of it. Has anyone tried the high level Manuka honey for their mouth ulcers ? I started using it before chemo, and so far so good. A nice big dollop on a teaspoon and rolled around the mouth. It tastes like caramel sauce. Good luck with Onco visit and treatment plan, Mai. Sending positive thoughts for those off to chemo. Stay strong, ladies, this is just a bit of a blip. I think for most of us we are half way there. Got to be good, right? 🍀💋

[Trisha69]

Morning ladies, slept from 8 to 3.30 🙂  then 5 to 6, being a slug and have gone back to bed..

You will be fine Wolfee, its true the longest bit is getting it ready and sterile then waiting for x ray result. Thinking of you.  I am glad I had it because now am going thru treatment I bruise easily so at least that doesnt happen with PICC XX

Good luck Mai7 and Anna.  How u doing Annie? Treehouse?

Big hugs girls xoxo

[Trisha69]

I am going to nominate my BC Nurse Gillian Grey 🙂 xx

[treehouse]

Morning ladies.
Hope you got a good sleep Trish and you take it was today.

Wolfee, thinking of you today with your line fitting. 💪

Mai7, good luck with onc today, fingers crossed for tomorrow.

Annie A treatment 3 😁 good luck.

Anniej thinking of you. Really hope you are ok x

[MJK]

Hi WolfEE, I hope you're feeling better today and the PICC line fitting goes well. Like Trisha I found it very straightforward and quick, the longest bit seemed to bemaking sure everythingwas sterile which is reassuring. Trisha, I hope you had a good night's sleep in your own bed. X

[treehouse]

Ooh Wolfee I feel for you . I am similar with diarrhoea causing burning. Not much blood but a real pain in the ar**.
If it's not one thing it's another.
Trish we are similar with both being HER2. 😁

[busybeeS]

WolfEE, sorry to hear your sill suffering but glad you went and got it checked out. At least you now have some measures in place to try to alleviate the symptoms. If it follows a pattern in your treatment cycle you'll know when to prepare next time.
Glad you're back home Trisha.
AnnieJ, how are you getting on?

[Trisha69]

Isnt your treatment similar to mine? x

[Trisha69]

OUCH!!  Big hug xoxo

[WolfEE]

Oh forgot to mention my bottom problem got worse on Sunday it was like trying to pass glass and so much bleeding. The pain was constant even watching tv in the chair so I called the help line and was told to visit A&E
So five hours and an examination later I was told it was a fissure. As they take 2-3 weeks to heal (sometimes longer) the chances are it won't go until chemo and steroids finish. They told me to drink fibre drinks daily keeping eveything toothpaste consistency so avoiding making it worse and then gave me a numbing cream that I can try and apply 20 mins before going to the loo!!!!!!

[treehouse]

Glad you are home and staying positive Trish. I guess knowing what is to come helps you prepare. I know I am half way through chemo but that is a small part of this very long journey. One step at a time. X x

[WolfEE]

Glad your home Trisha must feel great being back in your own home out of the hospital. Take it easy and look after yourself with plenty of rest xxxx

[Trisha69]

Hi all

So home at last.  They were wondeful in the hospital and the food once I could swallow it was top notch! 

Have a little Pharmacy going on in the spare room and now have Oral antibiotics for the next 6 days and drink supplements (MIlkshakes high in calories)

My blood results are still low so need to rest.  Not seeing my old lady this week and need to stay away from people, keep  contact to a minimum.  Still have ulcers on my tongue so still difficult to eat anything other than soft food.

Its good to be home,

Spoke with my Breast Care nurse this morning and she explained my course of treatment in better detail , so here goes............

3 cycles of FEC   Each cycle is every 3 weeks.  Have had 2 so far and next one is 7th July

3 cycles of Taxamine and Pertuzumab  and Herceptin.

Then scans to look at lump and meetings with Surgical team to discuss if a Lumpectomy or Mastectomy.  The BC Nurse thinks Mastectomy the likely option so they get to it all! 😞

Then 15 more cycles of Herceptin given as an injection, so PICC line can come out.  Whilst all this is going on will need Radiotherapy 5 days a week for 3 to 4 weeks depending on the surgery I have.

Scans at regular intervals of my heart and blood tests.

Quite a schedule!  BEING POSITIVE!

[Trisha69]

Hi,

Mine was very straight forward.  They said would take half an hour,  Took 10 mins.  A local, inserted the wire,a monitor to see what was happening then an x ray to check in the right place and that was it all done!  Ask them for a waterproof cover for when u shower or bath, not all Trusts provide them but worth asking and better than cling film and a plastic bag, Good luck x

[WolfEE]

Hi all,
I've not got any type of insurance not even on mortgage because I had genetic testing 15 years ago even though they were unable then to identify anything (due to lack of knowledge outside of BRCA genes) back then and no living relative to test against it was abandoned (I saw them again today as I am now the living relative but results will take around six months Xmas time) anyway because of the testing any life or illness cover was difficult or so increadably expensive I haven't taken any!!
I popped in2 the oncology ward today because I was told my picc Line would be done this week and I hadn't yet heard anything. When they chased it hasn't yet been processed but they said a space they could fit me in tomorrow so it's booked tomorrow morning 10am I'm so nervous and worried sick over it. I had assumed I'd be put 2 sleep but I'm sure the nurse told me I'd be awake and able 2 drive later in the afternoon. I've got other appointments later in the day.
Can anyone tell me what actually happens when you have it put in??
Xxxx

[MJK]

The sore mouth sounds horrible. I've been lucky so far but had Benzydamine in my goody bag just in case. Not sure if it works but as everything else RBH has given me has been spot on it's worth checking out. Here's the link for PIP. https://www.gov.uk/pip/overview

[treehouse]

Rosie and Trish it sounds horrible. I think that must be the FEC curse. I hope you find something that soothes. I remember someone mentioned frozen yogurt. Was going to try it myself when I eventually get out of the house.

[Trisha69]

Hi rosie. Am on all of the above. I find difflam the best but also given Nysatin. You swill it and swallow. Coats the mouth.
.Also Xylocaine 10 mg spray which numbs it all for a little while. The hospital gave me these and have helped. Am feeling the pain with you! Have just been discharged from hospital and on way home. Let me know how u get on x

[Rosie65]

I've feel like I've used everything on mouth/throat problems. Started a few days ago with the bicarbonate, Gengigel gel and mouthwash and cleaning teeth after every meal which has helped the ulcers. Now with sore throat have stepped up to Gelclair, Difflam and paracetamol! It is a bit better than last time no white patches but still sore.

Also have stomach tenderness so just had bath which was nice. Not logging many work hours.

Must be nice to have your son home Mai and to make the most of the good days. My son is here until Friday which is lovely (when he gets paid!!!). He has been through uni and is out the other side.

[katie11]

Treehouse I also had critical illness cover and I made a successful claim. The pip (personal independent paymemt) claims are a non means tested benefit from the goverment. My friend who has just finished her chemo made a claim and has been successful so I'm going to have look into it.

Hope everyone else is doing ok xx

[treehouse]

Hi Mai7 yes definitely a pattern to my tummy trouble. It is manageable but. Bottom is very sore as per conversation 2 days ago. I really can predict which bits break and when now. It starts a mouth and works its way through my digestive system.

Katie I took out critical illness cover and am in the process of a claim. Will let you know what happens. I was going to bring it up if and when it was resolved.

[Mai7]

Trisha, glad to hear you'll be home soon and getting a visit from your daughter will be good for you too.  You get woken up by seagulls whereas I get woken by wood pigeons cooing and bouncing on the TV antenna!

Rosie, hope you manage to get the sore throat under control. What are you taking for it?

Treehouse, hope your tummy upset doesn't last too long, is there a pattern? Does it appear at the same time each cycle and last a few days?

Ive been for blood test this morning, then it's Oncologist tomorrow then FEC 4 on Thursday. The end of my good days is drawing closer!  My Son arrived home late yesterday and is still in bed! I've tried to wake him (which consisted of a conversation with two feet sticking out of the duvet) but I think he is still catching up on sleep after all those exams! Students! 🎓

[katie11]

Thats a nice idea treehouse . I think that they are all amazing too.

My onc has also said the weekly Pacitaxol isn't as harsh as EC too . So we ll see.

Has anyone else claimed or in the process of claiming for pip payments? I didn't know you could but my friend has just had her claim accepted so maybe worth looking into? X

[treehouse]

Hi ladies. I am having an appreciation day and I hope I speak for many of you when I say I am in awe of my team caring for me from the NHS. I know Annie and Trish have recently experienced their care.
Anyway. Did you know you can nominate a doctor, nurse or team for The Suns Who cares Wins awards.
I know it is a long shot but I am sure they would like to feel appreciated.
X keep fighting girls 😁

[Rosie65]

Trish - will be lovely to have your daughter around, I bet you can't wait.

Katie - they're planning 12 weekly for me although may only be 9 if blood count falls too much. Onc seems to think it is less harsh than EC but don't want to get my hopes up.

Fourth EC hasn't been too bad, typical, just as you get used to it, it all changes. Am working from home today (on my tea break at the moment ha ha)

[katie11]

Hope you get home soon Trish xx

Hope you feeling better now too rosie, yes I'm doing 9 weekly Pacitaxol starting week tomorrow!!! Xx

[Rosie65]

Katie - I'm starting Paclitaxol next Thurs, have to go to a different hospital to receive it. Are you having it weekly?

Was also awake at 4am, sore throat kicked in right on cue. Have been trying to pre-empt it but guess you can't beat these chemicals completely. However, thanks to all your advice I have an a armoury of meds to hopefully keep it under control.

[Trisha69]

Had hugs from the nurses. Been bit tearful. My daughter the 21 year old coming on Sunday can't wait have cuddles. Hope your tum improves. Ive the opposite 😞 neither is pleasant. Sending u a big hug xoxo

[treehouse]

That is good news Trish. So glad to hear you are well. I think you and Annie gave us all a bit of a pause for thought. This chemo game is tough and serious. Support is essential emotionally and physically.
I agree this forum is fun but also a bit of a life line.
I too was up at 4am - diarrhea has started. Meds are working.
Take care ladies x x x