@emsd2025 - try not to worry too much - hopefully clean water running over it in the shower isn’t as bad as submerging the PICC line.
I’m at the hospital today finishing my last EC - I trialled the suzipad ice gloves and socks. I had put the gel packs in the freezer overnight - they werent very frozen and warmed up quickly so will have to have a rethink before I start paclitaxel but I was glad I trialled them before starting paclitaxel.
Soooooo…. Supposed to be doing week 9 of pax today… got a call this morning to say it’s cancelled because platelets are too low (88 and bar for chemo is 100) and they want me to recover before start of next cycle next week (pax,carbo and pembo)
Feeling a mix of emotions… upset as had prepared myself mentally, worried as does this mean less effective, happy because maybe this week I won’t feel so shit, vindicated as knew I had been feeling low energy this week anyways.
Not sure what this means for next week, need to go for extra bloods to check in on progress before oncology appt on Thursday ahead of cycle 4 on Friday. Maybe blood transfusion in the cards.
Has anyone else had a chemo cancelled rather than delayed?
Hope you are all doing ok
X
Hi @cridders, I’m a July starter but just popped on here to sympathise with your delay. I think you’re at RUH, is that right? Me too.
I’ve finished chemo now, but my last cycle was nearly delayed because of high liver count and low neutrophil count. I went in on the day and they did a further blood test, decided to reduce the dose then sent me home for a couple of hours while the dose was made up. So I didn’t have a delay in the end but empathise with the emotions you go through when told there might be a delay.
I also had low platelets during a previous cycle and just want to reassure you that it’s probably an iron transfusion that you might need, rather than a blood transfusion (I think that only happens at much lower levels). I had my iron transfusion through my PICC line. It looks like a bag of irn bru going into you, and took about an hour. I didn’t feel immediately better and my count is still only 102, several weeks on. So it isn’t a magic bullet, but I have felt a little better than I did at my lowest point (think I’d gone down to about 90) - I’ve been more able to get out walking and more energy to do stuff around the house etc. Hope this experience is useful to you as the decisions made for you are likely to be similar - ie iron rather than full blood transfusion. Hope that reassures - I don’t know about you but the idea of a blood transfusion was a bit scary to me!
I’ve not had any delays/cancellations but I know lots of people do. A friend of mine has regularly had to week delay due to blood counts not being sufficient and several ladies I’ve met in the unit have had part of their treatment missed out for several cycles. Take the positives and enjoy a less restricted/tired week, and best to be as strong as possible before putting your body through chemo.
Thanks @hedgehog - yes am at RUH - so grateful having the Dyson centre on my door step!
Might be a double whammy for me as they also said about blood transfusion at last oncology appt so will wait and see how the week pans out and try not to worry until it becomes clearer.
Going to take it as a sign to keep on resting!
X
Thanks @dizzy3 - am really intrigued to see what a full week of more “normal” feeling days are like rather than my usual wipe out on Sunday-Tuesday! May be a sign of what the EC cycles will be like.
Kim x
I had my 3rd of 6 cycles on Wednesday. All went well and I loved the fact my docetaxel & carboplatin infusion times were halved to 1 hour each! Most importantly 2 hours less of the cold cap!
My biggest issue at the moment is hot flushes, mainly at night. I’m 55 and was perimenopausal before diagnosis. I was a few months into HRT, which was helping with flushes and join pain. I stopped taking the HRT after diagnosis. Does anyone have any suggestions for managing/tolerating hot flushes?
Best advice I have is to wear natural fibres. Same would apply to sheet - polyester, viscose, nylon etc all provoked more flushes for me.
As for coping with them - I’ve been relatively fortunate in that they pass as quickly as they come - so I always remember that.
Finally, fans! Hand held or an electric neck fan (my lovely bff got me one) like this one Amacool Neck Fan Battery Operated Neckband Fan 3-Speed Hand-Free Wearable Personal USB Fan for Hot Flashes Home Office Travel Outdoor Sports (Black) : Amazon.co.uk: Home & Kitchen
Thanks @anim4l managed to get the lovely centre to check and some of the greasing changed so all ok, yeah mine don’t stay frozen frozen but seem ok ish. I take them in a cool bag with a load of ice around. I got a couple of packs to change over but haven’t seemed to need to yet
@emsd2025 - thanks - I’m leaving them in the freezer a bit longer next time - I did use ice packs to keep them cold but that didn’t seem to help
@cridders - hope you’re doing ok - delaying/ missing treatments seeks quite common from the ladies I know in real life who have had breast cancer and they are still clear - this really helps me as I know 5 people who have had chemo for breast cancer and they are all well now
This is so reassuring!!
Ladies has anyone had liver issues with Pembro? My bloods are a bit high and my oncologist has prescribed a week of steroids sort of preventatively to try and ensure we can continue with Pembro. Bit scary…
Hi @emsd2025 my liver readings jumped after my 1st pembro but they weren’t sure if it was that or pac/carb or even the filgrastim. Which enzymes are elevated? My ALT was the one they were watching but it has since come down. Thankfully I didn’t need treatment just monitoring but knowing my liver was struggling was really frightening. However I since found out it’s really common. All the chemicals are such a shock. My ALT went to 187, but I felt a bit better when a friend who has been through chemo earlier this year said hers went over 200 and came back down. Hope that helps, you’re not alone xxx
@cridders so sorry Kim. If it turns out you do need the break then take the rest. This is so common isn’t it? Most people I know who’ve been through this have had a well needed few days or a week to recover blood levels at some point, and isn’t it telling that you knew? Another friend of mine who I went to school with (scary how many women I know who’ve been through bc) had to have a transfusion and she was so upset but after it she felt so much better and finished her treatment without any issue, that was 18 months ago and she’s through the other side. Sending love xxx
Hmm interesting so my alt is 49 and my alp is 151. It’s the alt she was worried about and that’s why the steroids but she did say nice guidelines say I don’t even need she’s just cautious. Also hooray she couldn’t feel the lump!! Of course doesn’t mean anything but hopeful 
x
Well the steroids are certainly affecting my sleep I’ve been up since 2.30 - I tried to listen to an audio book - gave up at 4.30 - caught with the news and now have sorted out the Christmas decorations. Last Dexamethasone this lunchtime so I’m expecting to be very tired tomorrow when it wears off.
Caring for my mouth ulcers is a full time job - I’m using salt water/bicarbonate of soda rinse after food. Then difflam mouth wash an hour after, then gelclair 30 minutes before eating. The steroids make me want to sit on the sofa and eat crisps so at least the mouth ulcers are preventing that! I iced my mouth during the EC infusion - hope that helps too - so far not as bad as round 3.
Hope everyone is enjoying a relaxing Sunday and is as well as they can be
Going online to buy a cashmere beanie to cover this , I look normal from the front and side - so on balance I’m glad I didn’t shave my head. hoping the regrowth will start now I’ve finished EC and moving onto paclitacel in a fortnight.
This looks great!!
This sounds so painful - although I totally get what you mean about steroids and crisps. Started my lot this morning sigh. Christmas decs - I can’t wait!
Great idea about the beanie, it is so good that you retained hair on EC as I thought I read that has mixed results. It is really great to hear you have had success.
I have been shedding a lot of hair but my hair was quite thin so I knew I was up against it. And this week I ended up with a huge matt that took days to get out. I think it was from hair shedding in the shower, even though I was super gentle. Fortunately when my daughter arrived she painstakenly unpicked it for me and although I lost some from it I did not have to cut it out.
@buggeringon that’s a great feeling to be half way through. It was my half way point of the first treatment last week, it is such a good feeling. I did not know about mangoes being so high in iron and vitamin C. That is a great tip thank you.
I am so sorry to hear your treatment was delayed @cridders I hope you can get a good rest and recharge in between. I hear it happens and although it is the last thing any of us want but sometimes we need to allow our bodies time to recover a bit more. Thinking of you.
From 22nd December I switch to EC three weekly. I saw some do EC two weekly. Anybody know why this is?
@emsd2025 hope the picc line is OK for you and not causing any issues. Sorry to hear about your liver levels. Are you still able to have the chemo tomorrow? Amazing news she could not feel the lump. Such a boost, so happy for you. I have my breast MRI this evening. Not sure how long the results will take will be crossing fingers, toes and anything else I can find but I am so happy for you. Do you know when you will have your scan yet?
It is so helpful having this forum and being able to see how everyone is doing, the good, the not so good, the highs and lows. It really helps when I have a wobble to come on here and read how you all are. Such a great bunch, thank you. Good luck for everyone having treatment this week. Thinking of you all 
Hi @cathie2 everything crossed for your MRI, let us know how it goes. My doc ordered mine on Fri but not sure when it will be def before the switch to EC. Halfway is amazing @buggerington.
Luckily ok to have treatment this week, sorry about the break @cridders bit annoying but hopefully you’ll feel better for it I’m waiting for my genetic testing result and getting a bit anxious. 100% agree how great the forum is - so helpful xxx
