Also @hasnae87 , I just realised that I forgot to tell you that this is probably a case of pure medical negligence and it can also be life-threatening. It is absolutely impossible that the doctor did not see your blood test reports before signing off on the infusion go ahead. The chemo ward CANNOT give you an infusion unless the doctor signs off on it after looking at your bloodworks. ASSUMING that your bloodworks were okay and then blaming it on the app is something that you should not just accept at face value. I am absolutely furious reading your post and how they are treating you. Thrombocytopenia is not a joke and it could have been life threatening.
2 Likes
I was talking to my sister and she said to mention it tomorrow to my oncologist and even to the chemo ward on Thursday.
Good news is this morning results just shown on the app and my platelets back to normal with 172.
Hope this round will be bit easier than the last one as my oncologist lowerd my dose again.
1 Like
@hasnae87 - Your sister is right, you should discuss this with your doctor and also your breast care nurse and the chemo ward as well. They should know that you are aware of their goof ups. Congratulations on your good bloodworks! Continue to take good care of yourself and rest well. Sending you loads of healing and health.
2 Likes
Also @hasnae87 which app is this, we donāt seem to be have this one. This would be good to have to have it all in one place.
1 Like
I live in Slough and the app for their hospital called My FirmleyHealth Record.
Thank you for your wishes.
1 Like
@hasnae87 glad your results have improved and well done for asking the questions. Its worrying when you gave to be your own advocate. Everywhere is different but Iām finding mentioning any queries to the chemo unit nurses tends to get them checking and so far they have got on to anything Iāve raised. Hope you start to feel a bit better soon.
2 Likes
@salbert glad to hear youāre recovering from surgery, and wow that youāre working from home already!! Iām not doing great to be honest, but seeing an oncologist tomorrow to discuss the SABR radiotherapy and hopefully the rest of my plan. I called MacMillan on Sunday as I was struggling and spoke with a nurse who was a bit more reassuring about things, well as reassuring as someone can be given my situation.
@hasnae87 sorry if Iāve missed parts to this while reading - but your team likely have a threshold for how low the platelets are for them to continue / based in combination with other results. Usually the chemo nurses check the results before giving and would raise any concerns but also in my experience the pharmacist would be unlikely to dispense the chemo if they were concerned too. Definitely worth checking with them what their thresholds are though. Glad your results are on the up. That looks like the MyChart app which I also have (and use at work) - just because you didnāt get the results in time doesnāt mean that they werenāt available to the staff, sometimes the results need to be manually released for the patient to see them.
7 Likes
Thank you @sooz1 hope you will hear good plan from your oncologist and give you some peace in mind.
3 Likes
@salbert I was getting close to bench slapping right up until I saw my oncologist last week and he announced they have done further testing on my residual and although the tumour still came back her2 negative the node was deemed her2 positive so I am to board the Kadcyla train instead. Could have cried or slapped him instead but managed not to!! No one had even told me more testing was being done and this was only a chance encounter with the onc as the breast nurse was off sick for my RT review. Now itās all a mad rush as Iām 12 weeks from surgery on Saturday. I was hoping the private oncology system was a bit less chaotic- seems not!!! Managed to keep my slaps away from everyone but did cry all over the RT ladies when I saw them as they said I seemed a bit flat and asked if I was ok. Cue for tears to unleash!!!
Glad to hear youāre recovering well with you new assets!!!
Can I ask the Kadcyla girls have you gone cannula, port or pic line. Iāve had node clearance so will only have one side to use for cannula but would quite like to try that first. Interested to hear everyoneās experiencesā¦ā¦
Love to all x
4 Likes
Itās amazing how different things in different trusts. I had my first bit of treatment just down the road in Reading & we had no fancy apps like that. Are you having treatment at Wexham Park? Iāve never experienced a hospital like Wexham Park where thereās such variation in the levels of knowledge and care as I have when weāve had treatment at Wexham Park. Thereās one doctor in the A&E who Iām eternally grateful for because she saved my husbandās life but the rest of them can just go do one. You really have to make a fuss there to get your needs met which is hard when youāre not feeling well. Iāve never had to advocate so hard for myself and my husband as I have when we were treated at Wexham Park. I work in Slough, so if you ever need someone to come and maybe help make them listen to you, Iām happy to offer my negotiation services 
4 Likes
I have a port which has been great because I wouldnāt have wanted to deal with a cannula or a PICC line for this long. My treatment centre insisted on getting me a port, they wouldnāt even consider a PICC line.
4 Likes
The first hospital I started at was like that. I thought it was me being emotional about the whole thing but since Iāve moved even the staff at the other hospitals Iāve been under have said there are problems there. It really is a care lottery. Problem is until youāve been through it you donāt know all the pitfalls youāre to navigate through. Hope you get it sorted @hasnae87. Keep speaking up x
3 Likes
@woody2 Iāve had cannula for Kadcyla - was never given another option. Managed 12 up to now. 
my poor little right hand holds up for the final two x
3 Likes
This is good to know - I asked if I could have a port because of the only having one arm for bloods and infusions and was told at my trust it takes ages to get / get them removed. I donāt want another PICC because Iād like to be able to have a bath and take my little girl swimming.
Does anyone know are we allowed to go swimming while on Kadcyla? Iām getting mixed responses due to āinfection riskā but I might lose my mind I havenāt been able to go since last October and itās the one kind of exercise I enjoy 
plus I feel like my little girl is missing out.
2 Likes
My first instinct was port. But then I read up about it and the procedure getting it in scared me! How did you find it? Did they do it under local or general? Defo donāt want a picc line. My veins were a bit knackered after chemo but are not bad on the side I could use. Just want to crack on with it as guidelines say start within 90 days of surgery which is rapidly approaching thanks to all the faff. Hoping I could start cannula and get port put in if necessary x
3 Likes
@sooz1 My team has given me no restrictions on anything / any activity. Iām pretty much leading a ānormal lifeā just aware if people are coughing and spluttering around me- so always have a mask in my bag xx
4 Likes
@sooz1 My oncologist says that I can pretty much do what I like whilst having Kadcyla. The only thing heās wanted to give guidance on was dental work. Iāve been in a hot tub and that was fine.
@woody2 The procedure is weird, not going to lie. Some people have twilight sedation but mine was just done using local anaesthesia. It took longer than I was expecting and I had a drape over my face to keep the bit where they were inserting the port sterile which was really odd and it made me a little bit claustrophobic. It didnāt hurt but there was a lot of pressure when he was putting it in. I have mine in my chest, they would normally have preferred to put it in the arm but my veins were too small on my one good arm to support that so they had to go for the chest.
5 Likes
Happy to hear that someone in this forum lives near me maybe we can meet one day after I finish chemo.
4 Likes
Yeah, definitely let me know if youāre up for a coffee and a chat sometimeā¦ Iām in Slough once a week(ish) 
3 Likes
Itās good sometimes to cry to let all the stress out, I do cry more while on treatment and maybe due to chemo giving us premenopause.
I am on docetaxol/carboplatin for 6 rounds but I asked for a port to make it easy for me to deal with my little monkey, the only issue is my stitches didnāt heal until last week and get inflamed so they used a cannula for second round to prevent any infection or leaking and I am being due to weekly check and the IVAS team sis that they will come to my chemo ward to access it not the chemo nurses so I am now half regretting it.
2 Likes