How are you all doing ladies!? Just wanted to check in!! For those who had their second round this week, (Pippin, madhatter, Rufusblue, NGS)  I hope you’re doing ok and hope those side effects are still minimal…and really hope you can enjoy some fresh air but also put your feet up this Easter weekend.

i’m good, slight niggly throat still (day 10!!) but gargling difflam which is working really well. Slightly constipated but energy back and hoping for a good week or so before round 2 on the 9th! 

Oh and my taste might still be a bit off but it turns out chocolate still tastes good!!! 

Hope you all enjoy a lovely Easter. sending hugs xx

Hi Greeny80, lucky my side effects still minimal, a bit of constipation, which I think is the meds. Last time it eased up once I stopped taking the tablets. My injections start tonight, so hoping that goes smoothly too. Annoying for you that it is affecting your taste, but be sure to enjoy an Easter egg over the weekend. Glad to hear the Difflam is helping your throat, might have to ask for some, if I get sore throat this time. I had one really bad night of hot flushed and getting up for the loo, but the last two nights have been a bit better thank goodness. As you mentioned, hope everyone else is doing OK at the moment. Sending hugs and thinking of you all. Xx

I'll be interested to hear what your team thinks of the hand and feet cold treatment. Brilliant that you have no sign of hair loss so far, fingers crossed that this continues for you. Xx

Hi everyone 

just checking in 

pippin I hope you have got on well today with the port and can now relax again 

as per first round last 7 days of injections have floored me with day 7 being again by far the worst 

I am seriously thinking of asking if I can stop at 6 days as I wonder if the build up just gets too much for me 

despite the cold capping my hair is shedding quite a bit.  It started between week 2 and 3 after first cycle and I’m finding it quite upsetting.   I do still have a good head of hair and so far no bald patches. My hair was very thick before. This makes me think I should persevere  at the moment. 

i think the osteoarthritis began after my total hysterectomy and removal of ovaries   I was only just 41 at the time and it was after fibroids were found thankfully non cancerous  

I took Tamoxifen for 5 years after that and avoided an estrogen supplement due to cancer risk   Makes me chuckle as my breast cancer is still ER positive despite all my attempts 

anyhows hoping everyone is doing ok and best wishes to those having treatment this week

xxx 

Hi Pippin 24, hope everything has gone well today with having your port fitted,  my veins are already playing up with all the blood tests so not sure if this might be the way forward for me xx

Hi Rufusblue, all went well today thank you. Was a bit of a shock when they told me I wouldn't be sedated, just local anaesthetic and gas and air. I did ask for the sedation several times, but they insisted I would be fine, which I was. I got to the hospital at 8.30am and got home about 2.30pm, a bit longer than I'd anticipated. The only concern I have is regarding sleeping, which I didn't ask about and they didn't mention. The port was put on my left side (opposite side to my cancer), which is the side I usually sleep on. I've looked online and it says sleep on back or opposite side to the port. I don't mind this while it's healing, but would rather go back to sleeping on the port side afterwards. Really not sure if this will be OK or not, so will have to try and find out. How are you feeling at the moment?

Hi Pippin 24, didn't get back until 6.30, my appointment was 3.30 but it was so busy catching up after the 2 Bank Holidays,  fingers crossed I'm feeling OK physically,  still struggling with trying to be positive but I'm trying,  glad all went well for you today xx

Oh gosh well done for doing it under local! Glad it went well in the end..sleeping wise I can firstly sleep on the side of my port (like you it’s the other side to my cancer side) but I have no probs lying on my port side..probably slept on other side for a night or so but it settled pretty quickly. Hope yours does too. Hope all goes well for your next cycle too…xx

Ah sorry the injections have been so painful..yes definitely worth chatting to your BCN about whether you can do fewer injections…I’d definitely ask. Hope all the other side effects have been manageable.

at the moment no sign of my hair falling out but I’m only just week 2..I did only have half a dose though so it may last a little longer?? Did you get any signs before it started falling out, like itchy scalp?? Or did you just wake up one morning?? I’m intrigued! My son said he wanted my hair to fall out as he wanted to see what I would look like!!!! I just can’t imagine how I’m going to feel when it starts to thin?! It’s super fine already so doesn’t stand a chance! Really hope you’re ok. It’s  a big thing losing your hair in the i think because it has such strong association with cancer..and I guess makes it feel a bit more real? Sending you virtual hugs. Good you have thick hair as maybe it will just thin rather than all fall out???

interesting about the Tamoxifen too..just goes to show there’s not certainty about whether it’s going to come back…all we can do is try and keep living our lives to the full….and hope! There is always hope! 

xx

Hey Pippin, 

Sorry just read your last message: I spoke to my team about the cold mitts and they didn’t really say much. They said some women had tried it so they wouldn’t be surprised if I turned up with them but they said there wasn’t enough evidence either way?! the lady I spoke to didn’t seem very knowledgable if I’m honest…. I’m torn as to what to do but I’m also willing to try anything so may well invest and hope it helps…neuropathy scares me. I don’t want to be in pain in my feet so that I can’t run or exercise..so may give it go..I guess it can’t hurt? Nothing to say it has a negative impact? 

Hi Greeny80, I was so nervous and kept asking for the sedation. They reassured me and said I would be fine. I was a bit of a wimp towards the end of procedure, just started crying, really not sure why. Think all the emotion of the last few weeks just came out. Was probably all the gas and air too, I was hogging it a bit! Thanks for the info about the sleeping, I was really concerned about it. I forgot to ask them and when I looked it up online, it said to sleep on opposite side. This wouldn't work for me as I like to sleep facing out of the bed. Xx

It's a shame the team were not a bit more knowledgeable about the cold mitts. I think it's quite popular in America, from what I've read. The neuropathy really scares me too, really not sure what to do. Hope all goes well with your next treatment  xx

It's a shame the team were not a bit more knowledgeable about the cold mitts. I think it's quite popular in America, from what I've read. The neuropathy really scares me too, really not sure what to do. Hope all goes well with your next treatment  xx