December 2017 Chemo Starters

[Shi]

Hi cathsin, glad you still have own room 👍👍 they’ll get temp under control soon, they have seen it all before which is something to focus on while you are there, I did when I was in for 6 days after my 1st one last October. Hope you have good menu at your trust, my trust food was 😋😋😋lovely, just like school dinners again 👍keep us posted on how you are 😘😘💕💕✨✨shi xx

[Cathsin]

Yes in own room but temp still high one bonus it's the last chemo x

[Shi]

Cathsin 😘😘hope you still have your own room and have been able to get a bit of sleep, it’s difficult when you are having temperature taken at all hours, so try and make some sleep up as you can. 🤞🤞🤞🤞That temp starts behaving and you can get home tomorrow, I know you want to go 😤😤😤but safer to be there till everything ok, you are 💪💪💪and you’ve got dr antibiotics 🥊🥊🥊🥊it now too. 😘😘💕💕✨✨shi xx

[Cathsin]

Neuts have dipped as expected but not too low as yet . Got to have 24 hours without s spike in temp before they will step down the treatment apparently. Just so tired x

[Shi]

Hi cathsin, hows your temperature doing? Hope it’s coming down for you 😘😘 and you get get home today 😘😘glad you got to a&e and kept yourself safe 😘😘please keep us posted on how you are 💕💕✨✨shi xx

[KirstyH]

Oh hope you feel better and get home soon cathsin! Xx

[Cathsin]

Yes kept in luckily in my own side room x

[Shi]

Cathsin, how are you 😘😘have they kept you in casa nhs or have you managed 🏃‍♀️🏃‍♀️🏃‍♀️Home? Big ❤️❤️❤️💕💕✨✨shi xx

[Cathsin]

Well sat in a and e came in with temp of 39.7 looks like it's an overnight stay at least for me

[KirstyH]

Yes I drove home after it. Thanks Rabbit, first couple bits that went in stunf but then was ok and no pain since or any side effects yet, fingers crossed it stays that way xx

[rabbit28]

Hi Karebear, I've driven after the herceptin injections without any problem. Well done Kirsty with the 1st injection, I think the first couple sting a bit then its not too bad afterwards, I've noticed it depends how slowly they do the injections, hope you don't get any issues with side effects xx

[Karebear]

Kirstyh
Can you drive the day you get herceptin injection

[Karebear]

I start my herceptin injections in 3 weeks the same time as radiotherapy.
But I've to stay in unit for 6 hours after 1st injection

[KirstyH]

My eyelashes and brows hung on right until last cye of chemo and see to have been getting very thin since since. Ive heard a lot of people say the lashes can go after chemo finished 😞 fingers crossed the gel has worked though and you wont lose them completely

That's me just had my first herceptin injection in the leg, took about 5 mins and is stingy on first couple bits going in but ok after that. Being kept here to be observed for an hour now xx

[Karebear]

TALIKALipocils Expert

10ml | SKU# UK200006259

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This is what you call it

[Karebear]

Ladies when did  you start to loss your eyelashes and eyebrows 

My friend give me eyegel to use and my eyebrows and eyelashes are  still hanging in there. Eyebrows have thined alot but still have some same as eyelashes.


I didn't put the name of it on the page incase it didn't work but if you know anyone you has been diagnosed if might be useful to them. You start using it about 3 weeks before chemo ..


www.spacenk.com/.../ this is the link 

[Jencat]

You have blue wee too! (not for long though!) x

[KirstyH]

Me too 😂😂 she actually said to me you might go blue like a smurf haha xx

[runawaygirl248]

Yeah I just had the image of a smurf when the surgeon told me about the blue dye! 😂😂 

[SamH87]

We can turn blue?! 😂😂😂 this makes me laugh more than it should do!! Xx

[KirstyH]

Thanks for the tip,Will make sure to do the exercises 🙂

I had my pre op assessment today and they were explaining about the blue dye and said that 50% of people also turn blue looking for up to 24 hours 😂😂 so to warn whoever is picking me up that could look blue or possibly grey 🙈 wonder if i will turn blue lol xx

[Karebear]

I second that runawaygirl please make sure you keeping doing your arm exercises ladies they are so important

[runawaygirl248]

You'll probably have the sentinel node biopsy done at the same time as surgery where they inject a radioactive isotope near the original tumour site about an hour before surgery and in theatre will trace where the breast fluid drains into and will likely remove those nodes where the fluid drains into. Those will then be tested in the lab. The surgeons may well use a blue dye as well to trace the lymph fluid if the isotope doesnt give off a strong enough signal. Be aware that if the blue dye is used then it can stain the breast for a length of time but the surgeons will no doubt tell you all about it.

In my case the signal was strong and no blue dye was needed so no blue boob for me!  Luckily fluid just drained to my first sentinel node which was removed during surgery and the lab results showed I had a small micromet in it (which they classed as a negative node as some Health Trusts do) but apparently no further treatment i.e. radiotherapy will be done to the area. 

Bit of advice to all ladies having surgery...make sure you do the breast exercises that will be given to you. They help with getting movement back into the area and really do help.

[KirstyH]

Yeah im sure they will do a sentinel node biospy as part of your surgery Sam and test them, then see if any further treatment needed. They only tested the one that was swollen on scans for me, no other tests to the normal looking ones.

They have said if I dont need the full clearance ill get rads to armpit instead as extra precaution due to having the 1 positive one xx

[SamH87]

Thank you! 🙂 ... Iv not had any kind of biopsy done as they ‘appear normal’ on the scans. I guess they will take a sample during surgery then and go from there! 🙂 xx

[KirstyH]

I did have one swollen node on scans of a node in my armpit at diagnosis so they took a biopsy from that and was positive but all other nodes 'appeared normal' on scans so they didnt test any others before chemo. Now they are going to do the sentinel node biopsy to check my other sentinel nodes but they will remove a few more extra ones in my case as well as sentinel nodes, as they are going to take the ones that are directly upstream/connected to the positive one from diagnosis to see if the rest are clear. If the rest are clear they are not going to do a full anx clearance but if there are other positive ones ill get a clearance with my MX xx

[Cathsin]

Sam I had lymph node biopsy before hand and came back clear except for the inter mammory node I have . They are still planning on removing a couple as a precaution I believe x

[SamH87]

Thank you ladies 💖💖💖
I still have surgery, rads and Herceptin to go ... so still a long way yet in terms of treatment but I guess I never ever want to repeat that chemo experience again!! I’m waiting on hearing back on some counselling so hoping that might help!! I do feel a bit better today... I’m sure the chemo drugs going around the system never help with the dark thoughts!

Good luck with the pathology results Kirsty... I have heard great things about the tax/Perjeta combo so I’m hoping a PCR happens for you! I’m also super nervous about that too! I asked my oncologist how quickly pathology results came back after surgery as I knew I’d be climbing the walls waiting for an answer!!
I’m sure I have asked this before.... but did you have any lymph nodes biopsies before hand or did they just use scans to decide if they were/weren’t involved?

Xx

[runawaygirl248]

Hope you are now feeling a bit better SamH87 😊

I know what you mean about recurrence thoughts. My journey seems a little different to many on this thread as I had surgery before chemotherapy and now waiting to start radiotherapy and then Tamoxifen. Ive let my head have a little wander about recurrence but keep pulling it back to concentrate on the here and now as best as I can. Its such a scary rollercoaster ride that we are all enduring and we will all gets various points where the gravity of our situations hit us with a bang at times. I think it is all pretty normal what we are feeling, I have been having private therapy sessions throughout my entire cancer journey so far which I think has helped however, I know that there is a lot more for me to work through yet to come to terms with the whole cancer diagnosis and the massive life changing impact on my life.

I still keep thinking I have more chemotherapy cycles as its just become a way of life these last 18 weeks and that in itself is strange! 

For me the cumulative effects of chemo on this 6th cycle is at its worst and I have had lots more fatigue and tiredness. My mouth and throat are the worst yet with white patches all over my throat and the skin stripping off the inside of my cheeks with a very sore throat. Im using all the meds prescribed by the hospital but having little effect.  Im also suffering with very bad dizziness, ringing ears and a very woozy / brain fog which Ive not really had the last 5 cycles so hope its nothing going on wirh the blood!

Stay strong ladies and for those attending appointments for surgery, just remember to ask lots of questions and make sure you rest up after surgery ❤❤

[KirstyH]

What a nightmare your last lot sounds Sam, glad thats the last one over and done with though.

I am also terrified of recurrence, had my worst dip just before final chemo but since then im worrying about a bad pathology result. At hospital today for pre op assessment for next weeks first op. Im hoping after results from surgery ill be able to relax a bit more. Good luck meeting your surgeon, let us know how you get on

Hope everyone else keeping ok xx

[Cathsin]

Sam bad news about your port . I too had a blood transfusion just after number 5 luckily it did not stop that session and now had number 6 too although it was touch and go as potassium and magnesium was low
I think I am still in the bubble as not thinking about reoccurrence yet just moving on to operation. I am expecting my dip to be after op and radiotherapy when it's all done and nowhere to go from there although I have still to have 12 heceptin injections once every 3 weeks so in effect still having treatment so maybe that's why it has not hit me yet x

[SamH87]

Hi Ladies! So glad to see so many of you having your last rounds this week! Hope the side effects are kind to you all!

Had my last one last week - in typical fashion I went out with a bang! 🙈 ... to cut a very long story short, my port kinked/split halfway through so I ended up having my Carboplatin through a cannula! Needless to say the thing is coming out pronto! Been nothing but agro.
I also ended up being in hospital on Good Fri for a blood transfusion. Seems 6 cycles of tax/carbo took its toll. Feeling much better now though and hoping to be out of the worst of the side effects. Just got lingering acid reflux and horrible mouth.

Got my scans next week to see how chemo has performed and then seeing the surgeon the week after. 👍🏻

Feel majorly down this week though. Think iv kept myself in a bit of a bubble since being diagnosed and now its really hit me. Terrified of recurrence... going through this all again etc.
Anyone else feeling this way after chemo? Xx

[KirstyH]

Aw the video didnt work cathsin, well done on ringing the bell tho!

Glad you spoke to breast care nurse camilla and are getting somewhere now with getting a closer date. Well done on final one xx

[Camilla9]

I spoke to the breast cancer nurse today and she said the policy at QEQM Margate, my local hosp, was surgery 6 to 8 weeks after chemo so she agreed my situation was too long between the 2. She will try to move my Onc appt sooner and if not possible wld arr an appt with the surgeon before I saw the Onc.

I have a CT scan on 30th April to see what success chemo has had on shrinking the tumour and surgeon will see me when results available. So all now satisfactory.

Had last chemo today and half way through the day the computers went down so the whole thing took ages.

I was chair shaped by the end.

Steroids kept me awake much of last night, hope tonight not so bad...

Night all. Hugs.

[Cathsin]

No looks like not don't know how to post pics or videos on this portal it was of me ringing the bell

[Cathsin]

IMG_3424.MP4

Not sure if you can see this video or not

[Karebear]

Well thats the last chemo done and dusted. Piccline removed as well. 

I got my radiotherapy introduction today as well.

So i got my boob tattooed as well 

Xx

[Shi]

👍👍👍🤪🤪🤪👍👍👍good luck with last chemos today 👍👍👍💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻Camilla, speak to your bc nurse about your operation think they should be looking at between 4-6 weeks post chemo for that, push and make a fuss or find out why not for 3 months if that’s what your trust tells you. But ring that bell today and celebrate end of chemo 🎉🎉🎉🎉💕💕✨✨shi xx

[runawaygirl248]

Good luck Camilla, Cathsin and Karebear with your final chemo infusions!  I would also deffo make enquiries about your surgery date Camilla as I think there are NHS protocols to be followed regarding timelines for surgery, chemo and radiotherapy.

Glad Ive had the last chemotherapy cycle last Friday as the cumulative effects are at their worst! The tiredness and fatigue is just relentless and lack of energy 😕 Throat and mouth also bad so on with prescribed mouthwash! Soooo glad its the last one!!! 

I have the meeting with the Radiology Department next week for my radiotherapy planning meeting in readiness for my 3 weeks of daily radiotherapy before starting the dreaded Tamoxifen.

We should all be very proud of ourselves for putting ourselves through the gruelling chemotherapy and sticking through it despite the hideous side effects that many of us have had! 

Stay strong ladies xx

[Unicorngirlmummy]

Good luck Camilla & Cathsin. As Kirsty said, that’s a very long time to wait. I’d call the BCN too, and mention it today at your unit. On my unit they email the oncologist. That’s far too long bless you. Xx

[KirstyH]

I will do Carhsin, app is at 11.30 and they said they will keep me there for an hour to monitor after jab xx

[KirstyH]

Goor luck today ladies in the chairs! Yes ring the bell cathsin.

That seems far too long to wait camilla, they mafe my app with my surgeon 4 days after final chemo and have me aurgery dates for 4 weeks after last chemo dose given. I would naybe push that further and speak to your breast care nurse as ideally I think they try to operate 4-6 weeks after last chemo. Hopefully breast nurse could maybe push things along for you xx

[Cathsin]

Kirsty let me know please how herceptin Jab goes on Sat x

[Camilla9]

Cathsin, lucky you with your op date already.

And a reduced docetaxol - wish mine was!

Good luck!

[Cathsin]

Sorry I mean Camilla about being in limbo x

[Cathsin]

Good luck everyone tomorrow I too am in the chair but with reduced docetaxel and first zoledronic acid infusion . Will be there from 9 til about 4 but will be ringing the bell to show the end of it .. still got 12 heceptin jabs to have. But Defo ringing that bell . Operation booked in for 3 May sorry Karebear that you are in limbo as am sure you just want to crack on x

[Camilla9]

Sorry Karebear, my iPad has a mind of its own!

[Camilla9]

Hi Karen said

I have final chemo tomorrow too. Then it's the op for me, but I don't know exactly what will be done.

I was told today that I won't be handed over to the breast surgeon until I've seen the Onc, but my next appt with the Onc isn't for 9 weeks. This means that I'll be in limbo with nothing happening for about 3 months!! If anything left of the tumour it will be in situ and maybe growing. I tried to get an earlier appt with the Onc but no chance.

I then have to recover a little from the op before 3 wks of rads. It all just goes on and on. 

Never mind, 7 and a half hours in the chair to look forward to. No WiFi at my unit so putting books on my Kindle to read.

Haven't heard from you, Sam, for a while?

Night all.

[KirstyH]

Good luck karebear!

Hope everyone else doing on and close to final chemos

I am a couple days away from the end of the final 3 week cycle, finally! first herceptin injection in the leg on Saturday tho. Hoping no major side effects from that xx

[Unicorngirlmummy]

Good luck tomorrow karebear! Having the PICC out is just lovely!!

Good luck to everyone else in he dreaded chair & I hope everyone else is doing ok. Xx