September 2018 Chemo Starters.

[Treemad]

I am aged 48, ER/PR- HER2+. 3cm lump removed in lumpectomy, one sentinal node with 3mm calls but other 20 nodes clear.

I have been perscribed 3 x FEC and 3 xTax plus Herceptin and Pertuzemab.

I have just had 1st of the Tax/Her/Per and am 8 days on.

Distended stomach, aches and pains, metallic taste, diarrhoea. But thankfully no nausea, which i struggled with on the FEC.

Trying Aloe Vera juice for gut, as well as gaviscone and Omeprozole, but it still feels like i am passing acid marbles (sorry if you are having your tea). Im avoiding fruit and acidic or spicy foods but it is still bad, what is going on inside to produce the chemical reaction? I don't feel the stomach is actually acidy.

[Lisa-T]

Thanks GabyF - will mention to my oncologist next week xx

[GabyF]

Thanks, Lisa. I was offered the test because I'm triple negative which has a higher chance of a genetic link. I don't think it's offered as standard for other types of BC at King's, but it's worth asking your hospital as they may have a different policy.

Gx

[Lisa-T]

Fantastic news GabyF ... such a relief for you and your children xx I’ve not been offered a genetic test ... does everyone get offered the test? xx

Jacqs - my fingernails have white horizontal lines on them too although the ends aren’t brown. Hoping mine last too. My little toenail has gone brown tho 😬 xx

[GabyF]

Hi everyone,

Finally had the result through from my genetic test: I'm all clear, no genetic link just bloody bad luck! I'm so happy for my children, as they won't have this cloud hanging over them. ☺ 🙃 🎇 🎉 😁

Gx

[Jacqs]

Hi All

So relieved to hear your news Pulapula 🤗❤️

Just ticked another Session off the list.  Now 2 is the magic number.  I’ll be joining you Mama Tony & Lisa in finishing by end Dec.

I took my nail polish off last night & this is how my nails look.  They’ve got horizontal stripes & tips are looking very brown.  They’re still intact & not lifting so i’m hoping they survive another 2 sessions  - Anyone else experienced this ? Xx

[GabyF]

Hi Pulapula,

What a reilef this must be for you - brilliant news! Will you need to have any treatment for the cysts?

I was very interested in you comments about your tumour. I suspect that I will be in a similar position, as I am tripe negative and the tumour can no longer be felt. You don't seem to have been given a lot of time to make these major decitions, but I hope that you can get lots of support in this process from your oncologist and BCN. Do you have a Macmillian or Maggies Centre you could approach as well? They probably wouldn't give you specific advice, but perhaps they have someone who can talk the options through with you?

Enjoy your Xmas shopping!

Gaby x

[Lisa-T]

Ahh that’s such a relief Pulapula ❤️ so pleased for you. Good luck with your decision about surgery ... you get bombarded with info and it’s hard to know what to do for the best.

Fantastic to be ringing that bell before Christmas MamaTony ... I’ve got my last T on 27th December so will also be celebrating and bubbling 😂 Not seen a bell at my unit tho (it’s only a small unit) so might have to take my own bell 🤣. I think I am also leaning towards DIEP flap reconstruction, when I’m ready for reconstruction (can’t face it yet). It’s amazing what they can do ... can even get my other boob made a bit bigger ... every cloud 😂 xx

[Pulapula]

Hi all. Just an update from today. Feel so relieved that the lumps I found in my good breast were cysts. Phew.

I’m a bit disappointed that the chemo hadn’t shrunk my tumour as much as I and my oncologist thought as it can’t be felt anymore. It was about 30-35mm before and was still 24mm in length (although in 2 bits and flatter than before). I have the option of breast conserving surgery (lumpectomy) or skin and nipple sparing mx with reconstruction. I’m thinking the latter as I’m triple neg and worried about recurrence. But recovery is longer. Surgery booked for 21 Dec so I need to get organised about xmas!!!

[MamaTony]

Hi Everyone,

Not posted for a wee while.

So happy for you Gaby that is great news. My tumour shrunk by 1/3 after one docetaximol which I was delighted about, however, have had 2 more and doesn’t seem to have changed which is disappointing☹️ They do say can be scar tissue and not all tumour as a result of the biopsies so hoping it’s that 🤞 Just one more docetaximol for me on Dec 20th and will be ringing that bell 🔔 and bubbling like a 2 year old 🤧🤧🍾🎉

Hope your mouth feels better soon Kath.

Next stage for me is meeting with plastic surgeon on Monday re operation in jan. Need to try and persuade them I want a double mastectomy and not a single one as they are recommending. Should get result of genetics testing any day now and they said if was positive they would do the double but I want it either way. I’m triple negative so want to lesson the risk of reoccurrance.
Researching the DIEP flap reconstruction which is a scary thought both the op and the recovery, however it has been referred to as the gold standard for reconstruction, anyone have any experience of it?

Hope everyone is catching up with their missed sleep 😴 and SEs are calming down. Lots of love 💕

[Lisa-T]

Morning all,

Big hugs for today Pulapula for your results ❤️ Will be thinking of you xx

Sorry you had to cancel your treatment this week Kath - it’s really frustrating but probably for the best as it needed doing asap! Hope your tooth pain has eased today ❤️

Fantastic news about your lump GabyF 😘 Hope all goes well with your last Paclitaxel today - a great milestone to reach - feels like we are actually getting through this nightmare Xx

Hope everyone has a good day xx

[Jacqs]

Sending a big hug Kath. Sorry your in pain and hope it eases tomorrow. It’s really frustrating when you have to miss a week, but best to deal with the immediate problem. Take care xx

[Kath1977]

Just an update.

Chemo has had to be cancelled for this week and I've spent the afternoon at dentist.

Had to have 3 big fillings. Am in pain tonight.

Thank you all for asking about me.

Hope you are all coping and had a good day.

Love

Kath xx

[Jacqs]

Hello Ladies,

So happy to hear your positive news Gaby 

Pulapula - sending you lots of positive vibes for a good result from your mri tomorrow.  

Kath - so sorry to hear about your tooth.  Were they able to do any dental work.  How are you coping with it? I can’t quite imagine how you deal with dental pain on top of all the other sh*t. 

A Little Pixie - hope you enjoyed the time with your mum & sister.  I’ve got my family visiting on Sunday for a pre- Xmas get together.

We saw the Fantastical Beasts film yesterday - very good.  Setting the scene for a few more films to come I think, although I did doze off at beginning.  Oops 😴😴😴

[GabyF]

I skipped out of my oncologist'office with a big smile this morning: she can't feel my tumour anymore!! 🎉 ☺ 🙃 Of course I know it's still there, but somehow the fact that neither of us can now locate it seems so much more exciting than the rather more scientific MRI.

Tried getting hold of someone at Guy's to find out about my genetic test, but ended up just leaving a message for some admin person. Frustrating! 😤

Gx

[GabyF]

Hi Pulapula,

I really hope they can work out quickly what that lump is. Waiting for results is so nerve-wracking. Christmas shopping sounds like an excellent idea for taking your mind off things. Enjoy yourself ☺.

Thanks for getting back to me about your genetic test. That's amazing they got back to you so promptly. I had my test 10 weeks ago and am still waiting 😡. I'm waiting to see my oncologist in 30 minutes so will ask her if she can chase it.

Lovely sunny day here in London, so I walked to hospital. It's good getting some fresh air, sunshine and gentle exercise.

Last Paclitaxel tomorrow, then 4 rounds of EC. Feels like a good milestone. ☺

Have a good day everyone.

Gx

[Pulapula]

Thanks Lisa-T, I hope it is something similar - I’m feeling a bit better about it now. Maybe some retail therapy tomorrow will help. Need to get organised for Christmas anyway.

Hope you get to see wicked on Saturday x

[Lisa-T]

Hi Pulapula,

I also found another lump a few weeks ago and it turned out to be breast tissue that had hardened!

It’s the waiting for results that’s the worst bit and you feel like you are going back to the start again. Hope you don’t have to wait too long for your mri results. Stay positive ❤️ Big hugs. Lisa xx

[Lisa-T]

Evening everyone,

Pulapula - Ahh so sorry to hear you’ve found another lump ... try not to panic (I know that’s hard) ... it could be anything. Doesn’t stop the worry, and you will, but stay positive ❤️

ALittlePixie - I hope your Mum didn’t get too much of a shock with your new look. Enjoy your early Christmas celebrations 🎄

Galligirl - hope your leg pains ease soon 💪🏻 ❤️

GabyF - Hope you get a better nights sleep tonight - I’ve always liked my sleep so I struggle when I wake up too early 😴 Although it is quite handy for a bit of online Christmas shopping 😂

Kath - what rubbish timing for your cracked molar - hope you get it sorted soon

Got my 2nd T on Wednesday 😬 at least I know what to expect this time. I’m hopefully going to see Wicked on Saturday. Booked it nearly 2 years ago so determined to go 🥊💪🏻 ... just hope I don’t fall asleep 💤 🤣

Keep going lovely ladies ... hope you all have a good week xx

[Pulapula]

Hi Gaby, I think someone on this group had something similar with a new lump in other breast and it turned out to be a cyst (I’ll have a read back shortly). I think I’ll call my BCN tomorrow just to make her aware and see if my MRI results are back yet.

I am relieved about the genetic test result. Whilst it would have given a reason why, it’s good to know as I have a 13 year old daughter. I had the test done on 10 Oct and they tried to ring me last week but sent a letter instead so that was 7 weeks?