Hi @arty1
My onco said I could come back to Phesgo. Let’s see how tomorrow goes. It may well be that my liver function is screwed again, and probably my red cells and platelets too.
I saw my cardio earlier today and I am going to have a heart monitor fitted as I have had 2 episodes of heart racing, well above 100 when I was resting… i thought it was low BP as I was feeling faint. So, although my LVEF last week was a great 63%, kadcyla may still cause cardiotoxicity. The last thing I want is heart failure! I must say I am quite worried.
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@marionse25 I’d go back to phesgo , the kadcyla is clearly not agreeing with you , it will be similiar to phesgo in cardio toxicity, have you had a recent echo ?
@marionse25 the tachycardia is an electrical problem rather than a functional problem so try not to worry on that score . I have supraventricular tachycardia but my cardiologist said not to worry . I’ve had three hospital visits in the last year to go on a drip to bring it down but when it got to 100 they were happy to let me go , mine goes up to 160 which isn’t good for my bp but my bp is usually low so I can’t have beta blockers 
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i had an echo last week and everything was fine
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@marionse25 That’s good news and reassuring .
If it helps my mum has had SVT all her life and her heart is in great shape and she has sailed through her chemo and is still having Rituximub at 75 with no ill effects x
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Thanks @arty1
My cardio was a bit concerned though.
I will see my onco tomorrow so will ask what he thinks
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It’s definitely better to have a cardio keeping an eye on you and being concerned than being dismissive , I had a two week monitor back in June , it did show episodes of racing but my consultant said he wasn’t worried as it was a regular rythym … I’d rather they didn’t happen !
Be interesting to see what your monitor shows up x
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Oh my goodness! I had my 4th phesgo yesterday and am in agony! With my first 3, they hurt at the time but weren’t painful afterwards. With this one it started to become painful last night and is so so sore still. It’s definitely muscular pain but I can’t weight bear on it and am just limping around. Hurts whenever I move and to touch. Anyone else had this? I felt like the nurse did the injection really fast and wondering if that’s why. She probably administered it over a minute or two, although I wasn’t timing so hard to know!
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Hi @marionse25
I also have SVT and on medication to try to keep it under control. I had 12 weekly Paclitaxel and 18 cycles of Herceptin. My SVT only happened once or twice, mine has gone up to 190bpm, but I was given some techniques to stop it. I saw a cardic physiotherapist and he said my is so random an exploratory procedure with possible ablation wouldn’t be worth it.
I have regular echo’s with the cardiologist and had MUGA scan with Herceptin. My heart is in good order but my ejection fraction did reduce from 68% to 60% during treatment but they said it will recover. The high heart rate is an electrical fault and not life threatening.
I wear a Fitbit and have a Kardia monitor that connects to your phone to do your own ECG. I can then send the readings to my cardiologist if required. This is the one I have.
This is the newer updated 6 lead. The link seems to just show the charity but if you click on it it goes to the product.
@rrey Never had that with any of the Phesgo shots I had, it sounds like the nurse might not have been good at doing injections or might have gone in at the wrong angle. My first one was done by a nurse who had never done it before and it was more painful than the following 2 although not as bad as yours sounds.
@marionse25 and @isthisreal Sending good cannula thoughts both of your ways as you have your second rounds of Kadcyla today 
As for me, I’ve had my 2nd Kadcyla yesterday and so far, so good. They ran the infusion over 45 minutes this time, so I was in and out in about an hour. It took me 2.5 hours to get there and back, so I spent more time in traffic than actually sitting in the chair. I’m switching to the new centre for my next infusion so I hope things will be much smoother going forward!
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Hi everyone
@Linda_Corinne Sorry to hear that your chemo got delayed. I really feel for you as we just want to get them ticked off. I hope you can get in some R&R this weekend so that you can recover for the next one.
@arty1 You have to speak to your team asap re the castor oil allergy. Bad enough going into it fearing an allergic reaction, but to know one is on the cards = no. You are doing so well though with all that you are contending with.
@marionse25 I sent a gentle complaint email to ask if cancelling appointments at short notice without notification was common practice, because if it was then I would make a point of checking my app every time. No response yet. By the way, I’ve been Googling and apparently we have ‘post chemo peach fuzz’. Not something I require, but I also discovered how many women just shaved it all off so this morning I did the same and feel great! Hairy face no more. That was one bc gift too many. Thank you, but no thank you.
I’ve got my fingers crossed for you and @isthisreal today. I hope it all goes off smoothly with minimal trouble.
@rrey That doesn’t sound right at all. I had my Phesgo yesterday and it doesn’t even feel bruised. It sounds like it was done too fast and possibly not very well. Can you call them and check this out?
@kartoffel I’m so glad you are changing to a new centre. Nobody needs to spend 2.5 hours in traffic on treatment days. That way madness lies. And I, for one, don’t need any help with that.
I have my penultimate radiotherapy today. How good it feels to be ticking it off.
Happy Friday, everyone.
Salbert
xx
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@salbert me either 
I went by the chemo suite at the new centre since I happened to be there anyways for my “exercise medicine” appointment and they were lovely and fit me in for my pre-chemo appointment even though I hadn’t booked anything and just turned up. It was such a relief to have something go easier than planned from the admin side.
Also, great that you’re almost done with RT. Are you going to go slap another bench after the last treatment?
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@rrey I have t started it yet but my understanding is they should inject it slowly over at least five mins if not more , so that doesn’t sound right 
@naughty_boob that’s useful re the monitor , good to know they are keeping an eye on you . Mums had SVT all her life and still takes beta blockers . The rituximub is caused the odd attack still and she bends over and it rights itself .
I’ve discovered vagus nerve massage techniques are really helpful for the attacks too x
@salbert it must be lovely to know the radiotherapy is almost over 
I’ve spoken to the breast nurse today and she’s relaying that info to the oncologist and pharmacy . She said she totally understands my fear knowing I’m allergic to one of the ingredients , I’ve been so stressed and upset by it .
Trying to take my mind off it by decorating the house for Halloween and we are off to n wales for three days tomorrow to visit the family .
My appointment is through for my picc line … not happy about having it as it will have to go into my right arm … but weekly chemo won’t do my veins any good
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@kartoffel That must be a relief to no longer have such a ridiculous journey for treatment x
@Linda_Corinne I’m sorry your chemo has been delayed , not that any of us are running in with our arms outstretched saying “give me the chemo “ but you want to just get it done x
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Aw thank you @salbert we did a little halloween celebration and she loved it! Here is a photo of us dressed up.
Yes they said could be temp so will have to see!
Had my 5th chemo today 
officially i can say one more to go. Just having a nice warm bath now and chilling out. Might watch a film and get a massage from other half. X
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@jeml you look fantastic 
I think I’m going to look like I’ve been dug up … actually I already do !! 
hooray for ticking off another chemo
Nearly there and you can slap a bench !
I can’t carry off Halloween glam , more horror
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Ooh you look great!! So spooky! We had fun we played, danced a bit ate pie n peas followed by cake.
And thank you! It feels good to say just one more to go! Just had a nice soak in bath and going to chill and watch tele now before bed.xx
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Thank you @naughty_boob that is super useful!
My catdio told me to check my fitbit too and I can clearly see some random picks.
Fewling a bit less anxious now
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Hi Everyone
Sorry for not naming everybody
Just back from hospital after leaving home at 9:45 this morning.
A bit of a canula palaver again, which was painful. But an experienced nurse came to the rescue. I hope that your canula was better this rinw @isthisreal. I tried to stay strong and not cry thinking of you!
Bloods were ok except ALT that was 74 but enough to get full dose over 30 min only. I halso had premeds by IV for nausea and fluids. Saw my onco who was optimistic it would go better this time. He gave me options of reduced dose next time or back to phesgo. Nothing prescribed for my SE unfortunately but was told claryrin which is used for joint pain during kadcyla is not a good idea as can cause heart arythmia. Not sure it spells like that but I took it for a week and it did not work. @arty1 who knows I may have caused my own racing heart 
Hope you all have a relaxing weekend. I may do nothing at all unless SE miraculously improve!
Sending love xx
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Hi @marionse25,
Glad you got round 2 in with slightly less drama than last time. Same here - only 2 attempts to get the cannula in for me! I didn’t feel anywhere near as nauseous this time which I’m relieved about, and they did the infusion over 30 mins and then 30mins observation, so it was much much quicker and better than last time. Im just feeling quite tired but nothing else yet. I think my ALT was a touch higher than yours on my bloods but my oncologist said they’d be ok with it until it hits about 200.
Fingers crossed you, @kartoffel and me are all in for an easier ride now onwards.
Glad @kartoffel you’re getting moved to a closer hospital for your next treatments.
@salbert well done for getting through the radio! You superstar.
Sending positive thoughts to the rest of the tribe x
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