Hi Naughty Boob,
I just wanted to wish you good luck with your scan this week.
I know this must be worrying but I hope it all goes well and your results are reassuring.
I too have to have further scans and investigations on my spine as I have ongoing pain and difficulty standing at times.
My oncologist will arrange further investigations when my cancer treatment is over
Anyway sending lots of love X 
@chakakhan Iām not sure if itās particularly new, but I think it is quite expensive which is probably why itās not available everywhere. Iām private and I got sent to a nice, expensive, fancy clinic for my RT. The clinic provided drivers and exercise 2x a week with PTs and reflexology. It was almost like being at a spa.
@norts It was the same for docetaxel. I had forgotten about the water tasting weird. I really wanted to hydrate, but it just tasted so weird and off putting!
I had to go in for my bloods for round 2 of Kadcyla (already!) and it was a nightmare. Not the actual blood taking, but just the logistics of getting to and from the hospital! The hospital is only 40 minutes away normally, but today it took me almost an hour and 40 to get there and then a little over an hour to go home and the bloody GPS sent me down single track roads where I thought I had hit something when my car activated itās emergency braking system. So stressful! I told the nurses that Iām not sure if I can handle another 12 rounds of treatment but not because of any SE, just the driving to/from the hospital. @isthisreal @marionse25 how are you ladies doing? Ready for round 2?
Hi @kartoffel
Thank you for asking! I have not been posting for a while I feel so down and exhausted, and reading messages about everybody getting on so well is unfortunately making me very upset although I am happy for them.
Kadcyla is a total disaster for me, I was expecting minimal side effects as I did ok on EC Taxol. My body aches everywhere, I have a terrible lower back pain which I have never had before, shooting pain in my arms and wrists, knee joint pain, nausea, bitter taste in my mouth constantly, insomnia, bloating, headaches, 
issues I have never had, heart palpitations and my heart racing which is worrying due to my heart conditionā¦ I am dreading Friday. I do my blood test about 3 hours before my infusion, so if it is not good I will have to come back. It takes me 1 hour 15 each way when transport is running ok, and I have to use my holidaysā¦ really not a great situation. The canula palaver is not fun either. I am going to try a second time but may well have to revert to Phesgo.
I am happy to hear youāre doing OK with minimal SE. I hope that @isthisreal is doing ok too.
I will update you. For now I am busy at work, which is a distraction but quite tough as I am exhausted.
@norts Iām definitely expecting the worst Tbh itās how Iāve lived my whole life , pessimism is a genetic trait in my family !!
@salbert smashing the radiotherapy! The light is sf the end of the tunnel and itās the torch of someone coming in to shovel in more !
Iāve bought some anusol botty cream in preparation, sounds like Iāll need it ! We actually have Imodium in already so thatās good .
@marionse25 this regime sounds utterly miserable for you , were you ok on phesgo ?
It sounds like kadcyla isnāt right for you at all 
At least you tried it , but if itās making you ill and miserable then I think itās possibly worthwhile looking into coming off it
Did you have a choice re Kadcyla? It is supposed to be better than Phesgo regardless of response by 5%. I have been told I will be on it if I donāt get 100% response or more than a few mm is left. I am having an ultrasound tomorrow after 7 of 12 Pacltaxel. The onc could still feel the lump on Friday unless itās scar tissue from my SLNB in 2018. I was told it would disappear after 6 weeks but my onc thinks more like 12.
@marionse25 iām sorry ypu are having such trouble with the kadcyla, especially as you sailed through EC, you just never know how your body is going to react to each treatment. I think if the second one goes badly it wouldnāt be unreasonable to switch back to Phesgo, quality of life is important and its a long treatment timr to feel so miserable. You have been through so much already and coped amazingly. Will be thinking of you. 
@chakakhan Thank you for thinking of me. Sorry to hear you are having issues that need further investigation as well. I spoke to my breast care nurse the other day to keep her in the loop and she said she wasnāt concerned and itās most probably aging.
@salbert great news youāre wizzing through the radiotherapy.
@Linda_Corinne Be thinking of you with your ultrasound scan tomorrow hoping itās got smaller and is scar tissue.
@marionse25 sorry to hear you are having a bad time on Kadcyla, you are such a trooper continuing working through all of this. Letās hope the next one will be less troublesome.
@kartoffel Oh dear the travel problems are not fun. I hate it when the GPS sending you on an alternative route that are single track roads. I live in a semi rural and some hospitals can be accessed via motorways or A roads which are very up and down with lots of twists and turns. On occasion our GPS has sent us down single track roads, luckily for me itās wasnāt for treatment. I hope you have a better time on your next visit.
Thinking of you all 
Thank you All for your lovely messages. @arty1 i was doing fine on Phesgo. I had 7 and the only SE was a couple of hours of shooting pain in the legs on day 3 and 4. Nothing else wxcept that I am needle phobiac and needed numbing cream each time, which I recommend alongside making sure the injection is done slowly
@Linda_Corinne
I had total response to chemo after my 4 EC and 12 paclitaxel. There was no sign of disease on my last MRI and my onco was confident nothing would be found during surgery. Well there was 5% residual cancer and also a massive 8cm dcis. Given my poor veins, the fact that I could not have a port etc my onco initially offered to remain on Phesgo. He said the difference with kadcyla would be minimal. After that I was unable to sleep for 3 weeks until I was able to see him again and agree to try kadcyla via cannulas. I havenāt started my AI to check what SE I would get. The AI would cause knee joint issues so double whammy with kadcylaā¦
@pennyp I agree that quality of life is important. I canāt see myself unwell for 10 months if it is to gain a few % only
@naughty_boob Thank you. Letās hope round 2 is better. I hope it will go ahead. I am yet to recive the results of my last echo and meeting my cardiologist on Thursday
Awā¦ Iām sorry youāre having such a rough time. Thatās quite the list of side effects! Maybe they can do something to at least stave off some of those for the next round? Iāll keep my fingers crossed for you that it goes smoother this time.
@marionse25 I was wondering where our Marion was. Iām so sorry you are having such an awful time of it. I think that what the others say with regard to going back to Phesgo seems like a very good idea if there is not that much difference in outcome. You have suffered so much already and 10 more months like it is too much to bear. Iām at Sutton on Thursday but I bet youāre in London, are you? Big hug to you.
@Linda_Corinne Do let us know how your scan goes.
@kartoffel I must say, your travails with your radiotherapy visits and now for Kadycla have made me appreciate the close proximity of my hospital even more. It cannot be underestimated how much having to travel long distances on top of horrid treatment will affect recovery. I do believe that one of the reasons I have not suffered so much is because I have been able to work from home and my hospital is so close.
Iāve just been listening to a fantastic and very funny interview with Daisy May Cooper about her new book, Hexy Witch. Itās her investigation into all things paranormal and is definitely on my Christmas list now. Talking of working from homeā¦ Iād better do some!
Salbert
x
Thereās definitely some benefit to living close to where youāre being treated. Before I went private, it was a 20 minute drive (usually) and the district nurses would come take my blood at home which was just so easy. Iāve just asked to be transferred to a different centre for my treatments, and that would be a 10 minute drive from my office which would make a lot more sense than having to go 3 hours RT for blood test. I donāt need to come into the office, I only come in for the free chocolate/snacks but I can pick when it makes sense and aligns with my treatments/blood tests.
Thank you @kartoffel
I am going to ask for premeds and see if they can give something for pain. Letās hope my bloods will be ok as I donāt want to waste anotger holiday and come back on Monday.
I hope tour second round will fo anoothly.
Hi @salbert
Thank you. I will be in London indeed not Sutton. If I can cope with Kadcyla a few more rounds I will aak to have infusions on Monday again instead of Friday. I could always see Dr Ring on Friday or come to Sutton on Thursday.
I am quite worried I havenāt started AI yet. I am Er8 Pr8 so not just HER2 potentially growing backā¦ triple positive seems a vicious circle
Happy to hear that RT is going well. I am still unclear as to why I donāt need the 15 RT I was supposed to haveā¦except for the heart damage as I am flat now and wonāt have anything to protect my heart. That makes me think that my EF was 63% last week so heart probably OK although I have had palpitations with kadcyla
Hi @kartoffel @marionse25,
Just been trying to catch up on all the posts.
Iām sorry youāre having such a rough time with the Kadcyla @marionse25. Youāve been given some great advice by the other ladies. I agree that if it doesnāt get better soon you should ask to go back to the Phesgo. You canāt continue with that level of side effects for 9 months.
I also had minimal side effects on the Phesgo but much more on the Kadcyla, but they are mostly minor (nausea, headache, dry mouth, weird taste, conjunctivitis and less sharp eyesight). For me, Iāve found it easier than EC-T. I am now able to do maybe 75% of my normal life (whereas I was more like 35% with EC-T) just feeling pretty tired a lot of the time.
BUT what I find really really hard is the chemo cycle again: the blood tests, oncology meetings, phone calls from the hospital about this and that, being on the lookout for infections and reactions, and worst of all the chemo infusion day with my destroyed veins.
With the Phesgo you wouldnāt need all the peripheral stuff and so it would be so much better.
However my oncologist said for my situation that Kadcyla reduces my recurrence risk in half, and so I am going to keep soldiering on. My bloods show my liver is screwed after just one of them, so i may not last long at this dose, but we will see.
My 2nd one on Friday.
Are you @kartoffel and @marionse25 this week again too?
Hello to everyone else too, I canāt remember everyoneās names and who is at what stage ( I blame the zolodex!) . But hang on in there! We will get through this with each others support x
Hi @isthisreal
Great to hear your SE are manageable. My infusion is on Friday too. I have my bloods on the same say which is more practical but means I could be sent home if they are not ok. It happened once with Taxol. My liver function was screwed too during Taxol so I expect the same with kadcyla.
Re kadcyla vs phesgo, my onco told me that Kadcyla was better but that it could not be quantified. There is no
Study to compare with phesgo. My understanding is that it would be a few % better.
I hope round 2 will be kind to us and to @kartoffel
I hope my veins will cope too and that both of us will have a gentle nurse that wonāt poke us ten times! I have such a needle phobia and terrible tiny veins arrggghhh
I will post an update on Saturday probably.
Take care and fingers crossed for round 2 xx
Keep going, Kadcyla girls. You really are getting there and you all deserve chocolate cake. Loads of it. Iām not being flippant, I genuinely think you should treat yourselves for having to go through it.
Iāve just had my oncologist appointment cancelled for today on the grounds that itās not necessary which I suppose is good but I did want to run this hairy face situation by him. I was not expecting hair to grow back on my face. Itās downy and white but undoubtedly there. Iām none too fond of it. I would have been quite happy with just the head, eyebrows and eyelashes. I have my Phesgo at 1pm so I am going to see if the nurse has encountered this weird side effect before. I really donāt want to start shaving my face!!
My us showed 5.9 mm which is smaller and it may have gone completely. So good news. I found out I will need a level 1 clearance to get clear margins as itās in the scar tissue from my SLNB. She also wants to remove levels 2 and 3 lymph nodes whilst there as I have no fat in my axilla so it may make it hard to operate if it comes back but would be OK if I decide not to have them removed as Iām worried re getting problems ie. Lymphadema etc.
Chemo tomorrow is cancelled as my neuts are too low so that is disappointing as the strength was reduced by 10% to try to stop this from happening.
Well no wonder you ladies who were on paclitaxol had the trots ā¦ itās got castor oil in it !! Which Iām allergic to !
What do I do ā¦ worried sick ā¦ she asked about medication allergies but didnāt think it worth mentioning .as I didnāt expect to be given it ā¦ My nain (grandma ) used to keep it in the cupboard , along with TCP it was her remedy for everything !
I had terrible stomach ache once , I was about 8 , she insisted I had a couple of spoonfuls of castor oil to āmove me ā I ended up with swollen lips and red wheels all over, a raging panic attack ā¦ and I had a worse stomach ache ā¦ I didnāt even realise the stuff still existed as a medication these days . I canāt use beauty products that have castor oil in either
It happened to me too! And then had to wait 2 more hours for phesgo. Admin staff who book us in are not very organises!
On the facial fluff I have it too unfortunately. It must be phesgo. A patient recommended a facial tool to remove it but I am worried it will grow thicker and darker.
Re chocolate I agree we deserve some. If only I could enjoy it! Everything tastes bitter and awful, worse than it was during EC itās been blend starchy food all week for me. I am seriously on my way to become a hairy potato!!!