My lump hardly shrunk at all during EC and Docetaxel on ultrasound but following surgery the surgeon said there were a few residual cancer cells- hence Kadcyla- but the rest was dead / calcified tissue. So from ultrasound yes they tell the size, but not what actual cells are xx
I also had gauze over my PICC and then the adhesive stuff as my skin is really sensitive. They had to use the more expensive hypoallergenic dressings on me as I blistered with the basic ones. And sometimes they used iodine to clean it too. It was so much easier with PICC. Glad Percy the PICC has gone but finding veins in my hand for Kadcyla is trying especially as they can only use one hand due to lymph nodes removal xx
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@salbert i am so pleased your Dad is home and doing ok he is amazing! Hope you can relax a bit now?
I havenât even finished my chemo yet I have just had the 5th one this week and got 6 in total so I really donât know why oncologist is so negative. Trouble is like you say they are the ones we are looking to the experts and he really has knocked me I. I have been telling my husband about you and your Mr Doom and it must have been terrible for you. All it takes is a little reassurance but I got none. He seemed to be focusing again on the so called pre invasive large area which he told me on a previous phone call he had checked and was pre cancerous now yesterday couldnât say but didnât give any reason. He just said they will have to wait for removal at surgery. This area was 11cm so I just feel totally doomed if this is now not DCIS. Thing is my breast is totally changed to how it was softened and thickening gone, lump has shown shrinkage from 19mm to 13mm on ultrasound and lymph nodes look better on ultrasound so why would he not give any reassurance.
@gromit12 this is reassuring to hear after an awful appointment thank you Iâm holding onto hoping mine may be the same
Xx
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Hi @erica
I start my chemo on the 15th May every week for 3 months Paclitaxel with Herceptin. Iâve opted for the cold cap as well even though my oncologist says my hair will thin and possibly brittle but he said the the capping works really well against the thinning. Iâve spoke to a few people and they have all agreed that the capping ( although not pleasant) with the exception of one who couldnât tolerate it that it works and they had the same chemotherapy as we are going to have.xx
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Hi @jobieejo I have done 5 weeks now on same chemo regime as yourself, I have cold capped and so far I havenât lost any hair! Could change, but it feels like a good start. I take a small fleece rug, a coffee in a stay warm mug and cereal bars to nibble as a distraction, one paracetamol 1/2hr before. Its manageable, bit boring for the last bit but Im finding it ok very best wishes for when you start
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@sassy3 I had a reaction on my first chemo then the second tine they gave me a load of pre meds then slowed it down from 30mins to 90mins, Iâve been fine since they have done this so hopefully it will work for you too, although i know its scary! I hope it all goes smoothly for you
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Thatâs comforting, i am really nervous about it. If they slowed yours down that much and do the same for me i will be having a very long day as my infusion was 1hr already then i have another one after that! Iâll be grateful if it can get completed though.
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Yes unfortunately it is a long day, as I have about an hour of pre meds then my phesgo injection then an hour infusion followed by the 90 min infusion. However it strangely goes fairly quickly especially if you chat to those around you and there is a lot going on, but take some things to do just in case you need it x
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Hello everyone
Hope everyone is doing well
On 8th day (first post chemo) my mum had very bad lower back pain and so I had to call the out of hours and back to triage. This was caused by the injection, she completed 7/8 injections, so luckily quiet common side effect and they told me to discard the last injection and she will have blood test to check neutrophil level
Otherwise she doing well after taking paracetamol as advised
Redness of the breast is almost gone and lump on the surface not visible anymore but internal the lump is still there but itâs more soft.
When she showers, the lump sometimes leaks clear fluid, I asked nurse and said to check temperature and make sure to keep it clean
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Thank you so much for checking up on us 
We did go to PALS on Tuesday and they tried really hard to deter us from opening a case. We were pretty adamant and then they did file a case against this sort of negligence and all the ruckus that was Friday. My partner was given the infusion finally after really really spending the entire day from 9 am to 4pm in the unit, and running aroujd all sorts of departments and what not, we really were up their nerves that day( and rightfully so). Finally we got a reduced dose because we couldnât get hold of the doctor to even have to sit and discuss her royal screw up. Even though the chemo is so time sensitive they had the guts to say, it will get delayed if you keep waiting to speak to a doctor etc etc. Finally we wanted something and my poor partner was so helpless and so so tired that she just took what they gave. This is something that we donât even know is the right thing to do or not. They really did treat us like nobodies but we wonât give up. This is such a catch 22 situation that they are taking advantage of to cover up their mess. For now we just sit back and wait until the next weekend. My focus right now is to just help my partner feel better after the infusion and then we pick this up again. I am not going to take being treated like we donât matter as the standard practice. Itâs just not fair.
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Ugh, what gits. Glad you didnât back down from making a complaint. Itâs bad enough when things are just heavily delayed (but still take place on the planned day), let alone when you spend pretty much the whole day there and get nothing but nonsense and no treatment.
Iâm lucky when it comes to treatment itâs been just delays but can imagine how infuriating it must be for it to be cancelled with no notice, no apologies and a day wasted.
I would return to PALs and say you want to update and add this new nonsense. Totally understand if you donât, itâs all so stressful when youâre dealing with everything else. Maybe worth mentioning (if itâs true) how dissatisfied you are with the oncologist and ask if you can be switched to another?
I got moved to another (out of my control, the first was more junior so they decided once I finished my initial chemo to switch me to her more senior supervisor). The care hasnât really changed in my case but maybe in your case it would?
Donât let them grind you down, like you said they know theyâre in the wrong and if they wonât right it then youâll have to make them. Youâre both so strong (that you didnât report kicking PALs in the throat for trying to dissuade you from making a complaint), donât let them try to get away with it. And keep reiterating the NHS is OURS, you have paid for it so expect the bear minimum of respect and care.
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So sorry you have been treated like this. I thought PALS role was the liaise between parties not to tell you whether you should file a complaint. It is your right to do so. As ready suggested I would consider asking for the most senior person within PALS about how you were treated.
Itâs not what you want to do when you just want to get on with the treatment but in the long run you will be helping yourselves and those that follow afterwards, if it happens to them. I complained about my treatment about being sent 40 miles away with an hour and half journey each way across rural wales. The travelling time added to my treatment was over 8 hour day. I was knackered.
I saw a lovely locum consultant for the first few months but she relocated back to Spain and afterwards I was seen by a cover professor of oncology ,who was lovely and very knowledgeable, but then afterwards senior clinical nurse specialists. I get follow up call every 3 months or more often true to medication changes and thatâs been 3/4 different doctors. Itâs very frustrating as you donât build up a relationship .
I am sending positive vibes that your partnerâs treatment side effects are manageable and that you get some answers soon.
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@sms I second everything the others have said. Itâs wrong you are having this sap your energy. I donât suppose you have an alternative unit in travelling range do you? It just feels like you need a fresh start. I so hope it gets better for you.
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Thatâs not right at all that theyâve treated you and your partner that way @sms No one needs more stress when theyâre already having to go through what weâre all going through/have been through. Have you shared what hospital this is at? Maybe someone here has some advice about how to deal with that particular hospital?
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Hope everyone as a lovely weekend! Today we went to Bronte country and visited the house etc. For everyone in the thick of it all⊠there is life after 
sure somedays can be tough but we push through. Todays adventure with my little legsâ:two_hearts:
I just wanted to asked mastectomy ladies, have you ever experienced itching? Usually at night time on the side of my body. Wondering if its nerve damage. Heres some photos of our little day trip today.
Jemmađ«¶
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Thank you @sez for the kind words of encouragement. We arenât going to back off and this week the goal would be to ask that particular oncologist off our care and follow up meetings. She has always had a very condescending attitude towards my partner which we have very successfully ignored for the large part because it has always been about choosing our battles at the right time. But this fiasco is off the roof, and therefore she needs to be sort of given the message that the people who come to this hospital also have an identity beyond being patients as well. Our time and our entire being needs to be treated with the basic human dignity and respect. Being a doctor she cannot play god as and when she desires. My partner is beyond tired at the moment so for now I am not even bringing this up with her this weekend, but it is a shared understanding between us that we wonât let this slip through so lightly. Never in the entire treatment period have I seen my partner so angry and disappointed and helpless. And as you rightly pointed out the NHS is ours and everyone is equally accountable for this system to run smoothly based on a shared understanding of basic human dignity and care. Thank you so much @sez . I will continue to post up on this thread when we take it further from here with PALS so that others can benefit from this situation if they face something similar.
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Dear @carrie5 , for now we do have another unit within travelling range but we have heard even more horrid stories about that one. So it is indeed a disappointing and a very very Catch 22 situation for us at the moment. A fresh start sounds so lovely , and as I read your lovely comment out to my partner she said I wish things would go back to a year ago when we hadnât entered the world of cancer and this entire grueling treatment phase being treated like demographic data. So yes, a fresh start would be really lovely I suppose but it is what it is and we gotta just push through in the best way possible. I apologise if all this sounds too much, I donât want to bring any of our spirits down at the moment. Thank you so much for being this amazing community of support and checking up on each other. It means so much and gives strength to all of us. We are not going to give up so easily with PALS and the hospital and make them realize what they did was wrong.
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Dear @kartoffel , it is rather unfair and very stressing. We are just waiting for my partner to feel a bit better after this weekâs infusion side effects and then we pick it up from there. The hospital we are going to is the North Middlesex University Hospital in North London and honestly speaking they have been decent so far . The nurses and the other staff have been really lovely all along in the past year until this fiasco happened. We really hope this gets sorted out in the most fair manner as possible.
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@anb1 morning, I wanted to give you some reassurance. I also had a large area of DCIS and Micro calcifications that they could never measure and I had two scans through chemo and could never really tell me anything other than the âareaâ was shrinking but never any measurements.
Anyway fast forward to post surgery results PCR. Try not to worry if they felt the treatment wasnât working they would change your plan Iâm sure x
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Dear @naughty_boob, thank you so much for the lovely positive vibes for my partner , she really needs them at the moment. These are the days in the Kadcyla cycle that her side effects and discomfort start to show up more prominently. Of what I understand, PALS has this role of being a mediator of sorts to liase between parties but I think it just means paperwork for them and also they donât want to get into the mess of of it ( atleast that was the impression we got). After all they are all part of the same hospital team and perhaps find it uncomfortable or inconvenient to start this chain. But then thatâs their only job so I guess they have no choice and they better do this. Next week when we pick this up we will insist on speaking with the senior must person on that team and see if they are any better . We are hopeful we will have the physical and mental strength to pick it up and demand an explanation and course correction ( whatever that may be as we are not even sure anymore) , but a basic apology would be great to begin with. Sending happy thoughts and healthy vibes your way. Thank you for your support and encouragement. We are really grateful for this community:)
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