I only had 7 lymph nodes. 3 of them had HER2.
I had to wash my hair today as I just felt too grotty. When I washed it there was slight matting, which took a little while to detangle. I didnāt really feel like it shed any more than usual though (I have super thick, wiry hair and I always lose quite a bit when I wash it). Tonight, my scalp feels really itchy and tightā¦I think the dreaded loss may be starting. Tomorrow is day 10 since treatment. Weirdly, this week I feel like Iāve made my peace with losing my hair, I mean Iām not thrilled at the prospect but I feel like Iāve accepted it. Maybe my follicles just held on long enough until they felt I could cope with it
I was up and down for the first few days, sometimes had a lot of energy, sometimes wanted to sleep for a month. Today (day 9) my sisters came to visit and I was out of the house for three hoursā¦youād think Iād ran a marathon, Iām shattered! As everyone keeps telling me, just listen to your body. Hope you get a decent nightās rest
Thanks for that Iām hoping Iāll feel better tomorrow been so unhappy today and thinking the worse. Iām not sure how Iāll get through 6 months but hope my mindset changes. My prognosis is not good for the future and upsets me so much that I may not be around for my beautiful daughter and 17 month granddaughter
Iām sorry to hear that and I hope that you are around for a long long time to come. I think itās perfectly natural to have days where the fear and anxiety seem to take control and staying positive just seems too hard. We feel how we feel and all of our emotions and feelings are valid, so donāt reproach yourself for having some bad moments. You are here and doing everything you can to be around for your familyā¦really, weāre all awe inspiring! We just keep on keeping on even though the hand weāve been dealt isnāt the greatest
What chemo are you having and what receptors are they? I feel tired at night but donāt do much for 2 days after. Mine is weekly so will have to see how I get on as Iāve worked full time so far.x
Good luck tomorrow. Iām struggling with nether region pain. I went for a walk which made it worse again. I have some stuff to use and laxatives until tomorrow. I rang re my PICC today as it bled on Friday again. She said it sounds normal which put my mind at rest.
First day of chemo today got off to a bit of bumpy start as had a reaction( as many people do to Paclitaxel ). Bit scary briefly but nurses were brilliant and straight on it stopped it and then restarted much more slowly once Iād been seen by a doctor. Thankfully no issue with carboplatin. Really pleased with myself for surviving the cold cap which wasnāt as bad as I thought it was going to be. First 15 minutes was very uncomfortable but manager after that. But struggled with my glasses as Iām pretty blind without them. Iām sure going forward it will be much easier when I go to get chemo as I know what to expect and what to pack. Taking a blanket that was really thick and fleecy with a fur lining was an absolute godsend as it was so cold with the cap on. Will definitely take warm socks next time.
Well done for getting through your first one!
Hi everyone, Iām starting chemoteraphy this Thursday - 4 cycles of TC. This is not my first treatment - I had chemotherapy in June 2023 - 4 rounds of EC. Iām cold capping - as it worked brilliantly last time. Anyone here doing TC? Iām really worried about neuropathy.
Hi everyone, had my first chemo last Wednesday, wasnt as bad as I thought, then felt really good on the Thursday. However Friday onwards has gone downhill. Have had the most horrendous diarrhea with a little bit of nausea too. Anyone got any tips? Iāve lost so much weight in the last few days because I cant keep even water inside me (tmi I know)! Taking the tablets prescribed, but they arent really doing anything. TIA xx
Thatās awful, Iām so sorry, last thing you needed. I am due to start tomorrow and already feel more run down than normal despite trying my best not to get sick. Itās just so much to deal with in the lead up to start. Iām sure they will get you sorted and started really soon.
I would call the hospital. They told me if I get 3/4 bouts of either in 24 hours to call. I rang today and spoke to my onc re my issues and so I am using germolene which should help the pain and the nurse whoās doing my bloods and PICC can have a look tomorrow. I was also told itās unusual to have pain in that area.
Hi all, Iām Rachel, age 40, grade 3 ductal carcinoma with DCIS, HER2+, ER- (donāt have PR results yet). Iām doing chemo before surgery, itās been really hard to get things started but am finally starting tomorrow - except that I just found out I am supposed to be on premedication which literally no one has mentioned to me until now. I really, really hope this doesnāt delay things. Itās been like this all the way through - I have had to chase my own appointments, scans etc. - it just seems the team are so overwhelmed, and Iām not even under a consultant at my hospital but a Saturday outsourced clinic to clear the backlog! Iāve requested to be switched over, weāll see. In the meantime, awaiting a call from a nurse to see what we can do now. Iām 30 mins drive from the hospital, so Iām guessing Iāll have to drive in and get it this afternoon - hope they call back soon. Chemo wise Iām on Docetaxel and Carboplatin, and Iāve also got Phesgo for the HER2+ bit. And who knows what else! Canāt wait to speak to the chemo nurses in person, itās been very unsettling the last six weeks since diagnosis (though I have a great CNS thankfully). Dreading it but also looking forward to getting started.
Cheryl that sounds horrible. I would definitely call your team and discuss if they can give you stronger meds.
Joining this thread as I started chemo last week. EC-T with 3 lots of of EC and then 9 weeks of paclitaxol done weekly. I havenāt been active on the forum since diagnosis which involved alot of horrendous initial tests to see if I was at a more advanced stage. ER+ her2neg mixed IDC/LBC mutifocal litte sh&te. MX and full lymph node clearance in July with hopefully a reconstruction in the distant future as chemo, then radio, then hormone blockers bone meds etc. I didnt cold cap in the end as my hair is not thick as it is and will look dreadful with even 20% gone. I do have a good wig now on standby.
As far as first round of EC wentā¦ okay. Some naseau but not severe, more like car sickness that wont go. Not going to lie as you shouldnāt wish time away but I would like to be coming down the other side of the mountain!
Sending love to all on this thread xxxx
Oh Iām following you Jules my first treatment was Monday and Iām pottering today and feel alright quite bouyant, yesterday I was sleepy but slept for 2 hrs on the sofa but still slept last night. But I fear itās like youāve described and Iām gonna be a wreck tomorrow. But like you glad first one out the way. Iāve had a picc line fitted which has been good for me so far. My steroids finish today but Iāve found this drink you can freeze as icecubes to suck on for nausea so Iām going to see how they work too. I didnāt do cold capping but you sound like youāre doing alright, my hairs super short already so didnāt see the point although I havenāt thought about all other hair loss. Good luck x
It just adds to the stress doesnāt it. I donāt think they appreciate that impact it has on us which is a shame. Iāve had a few cock ups along the way too, a BCN blurting out that my second surgery was booked and I didnāt even know about it. I had to drive 1 1/2 hrs to get my picc line in we have these trials and tribulations to test our nerves. I hope you get referred to an oncologist and in the system properly.
Iāve just had my first chemo on Monday and I think my own fear drove me crazy. It actually wasnāt too bad Iām on different chemo to you EC-T so I have 3 treatments of the first two and 3 weeks of the last drug. My steroids finish today and Iām waiting for the aftermath of that. But I was sleepy yesterday, when I got home I was on the sofa for 2 hrs sleeping but slept OK last night. So I will see how I go. Good luck and best wishes x
@nicnac17 ā¦ I am having a PICC line āinstalledā before my next cycle. I am presuming then the actual procedure to have it done I will be okay to drive back from? Already need transport for chemo days so hoping this bit I can do on my own?
Went in for my third cycle this morning but its been suspended and Iāve been sent home because of the spots and skin eruptions. I should have reported it to the 24hr helpline. Iāve got cream to put on twice a day and hopefully it will calm down by next week in time to continue the treatment.
Hi Janie, itās all so bloody disjointed isnāt it. And like you find this site so helpful and helps me make my mind up about things. But I think for me fear of the unknown has driven me the craziest. And we can only do whatās best for us in a way we see it. I had huge fear of drug leak with cannulas (I know it doesnāt happen to everyone) but I didnāt want to risk it so elected to have a picc line, which so far has been behaving (I also know they can have their issues). I had my first treatment on Monday and was offered the cold cap when Iād got in even tho my notes said I didnt want to do it so they may do the same with you depends on your unit. So good luck, weāre all here to help any way we can. X