Hi,
I have 3 x 3 weekly EC followed by 9 weekly doses of Taxol. I had my first EC on 10th Jan, next one should be 31st Jan. What about you?
x
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Yes there is that fear that it wasnāt done properly but the McMillan advisor said ultimately we have to be assertive and take control. We are doing it for us and the nurses donāt have that vested interest. I think every little helps where the cap is concerned and particularly with regrowth so its worth sticking at it. Iām definitely going to soak my hair more, get a swim cap on top of the blue cap and do all I can to ensure a better fit for my second EC.
X
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Hello ladies. Iāve just had a shock. I was planning on joining the February starters but I have just had a phone call to say they want me to start next week on the 25th instead of Feb 1st so if you donāt mind I would like to join your Jan 2024 starters.
I have a MUGA heart test on Friday, meeting with oncology nurse on Tuesday afternoon next and starting chemo 2 days later. Itās thrown all my plans awry. However Iāve managed to bring forward my hygienist appt to Tues am. Sadly I will miss my wig choosing appt as the guys are on holiday and I donāt think back until Monday. Also I will have to attend with gel nails as I canāt get an earlier appointment. Unless changed from 2 weeks ago I will be having 3 x EC then 3 cycles Docetaxel plus s/c Phesgo before surgery. I have a Grade 3 IDC ER negative, PR negative but HER2 positive tumour. They found a single lymph node which was slightly enlarged that measured 5mm which they said did not appear to be particularly suspicious, thinking it might have been as a result of the 3 tumour biopsies, but I havenāt managed to find out the result of that. Iām thinking now that it has cancer cells in it. Hopefully the BC nurse will be phoning later as I was expecting a call following the MDT meeting 2 days ago.
Iām in a bit of a dooflap. I like to be in control and I donāt feel I am anymore.
I would like to do cold capping and also interested in icing hands and feet as I have post shingles nerve pain so I would like to reduce the likelihood of my extremities suffering damage. Have any of you bought gloves and socks and can recommend them as well as advice me about them? Thank you. I do hope everyone has the fewest side effects from their treatment possible and all end up with good outcomes.
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Hi Alex, Iām on 12 weekly Taxol with Herceptin injections every 3 weeks for 6 months. Also radiotherapy and then bone infusions every 6 months for 3 years. I canāt wait to get the chemo doneā¦ it feels like the worst part! Good luck to you xxx
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Hi, a little update from me. My EC was due to start on Monday but they couldnāt get a cannula in. 4 nurses tried and my hand was like a pincushion 
the attempt was abandoned and my referral for a PICC line was put through again. I had it put in on Wednesday, pleased they did it so quickly. My arm is a bit sore. So starting my first EC session on Monday 22nd. Another down and up in my roller-coaster ride 
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So sorry to hear this, imagine thatās the last thing you need when all geared up to get started. Having to adapt to unexpected hiccups and changes of plan seems to be an important part of getting through all of this, not easy though. I had my second EC postponed as bloods not where they needed to be, was really frustrated to start with but have managed to make the most of the extra week and ready to go again on Monday now.
Glad youāve got your PICC line sortedā¦it does take a few days to get used to but soon feels quite normal and makes things much easier. Hope all goes well on Monday.
Mx
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I have taken matters into my own hands! Paxman lady phoned me after an email and we talked it all though. Iām soaking my hair before I leave the house and taking in my own spray bottle, towel, conditioner and comb! I feel less panicked as it was really difficult getting my hair completely wet over a tiny sink with people waiting outside to use the loo! It worked much better this week.
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Not sure if I will be a January or a February starter as I havenāt had a date yet but was given my treatment plan last Wednesday. It will be 4 cycles of ec at possibly 2 weekly intervals then 4 cycles of TC which has confused me as the information I was given was for paclitaxel and carboplatin with infusions of zelondrinic acid. Also will need a short course if radiotherapy after all this. Has anyone else had this combination and what were things like. Iām apprehensive about all of this. Any suggestions about how I can prepare for this will be appreciated Thank you and good luck to you all
Hi, i donāt start my treatment until tomorrow so canāt help with advice about that, but can recommend a guided meditation to help prepare for chemo. It is helping me. Good luck 
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Hi mandz1,
I donāt start till early Feb but a friend who did cold capping said to take paracetamol 30 mins before. I canāt do cold so plan on taking layers and a heated blanket. Apparently we have to get through the first 15 minutes then we āget used to itā. My centre uses Paxman so Iāve joined the facebook group and watched videos on their youtube channel. Good luck!
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Hi Amanda,
I start early Feb
4 xEC once a fortnight
4 x paclitaxel once a fortnight
Will need zoladex injection to suppress ovaries and oestrogen to plunge me into menopause and I know zelondrinic acid was mentioned but cant remember off the top of my head where it fits in.
The tummy injections?
5 days of radiotherapy after then years of 2 different drugs for the hormones.
Will you cold cap?
I think jakifromaccy and mks(canāt remember the numbers) are on a similar regime to me and 1-2 months ahead.
Good luck!
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Hi healing 24. Not sure about cold capping as Iāve heard mixed reports. I have a friend whoās been through a similar thing and she used a cold cap but said if she had to do it again she wouldnāt bother as it didnāt work particularly well for her. Thereās so much to think about. I donāt know about you but I find these forums useful even though they do scare the life out of me at times. Just a fear of the unknown I suppose. Hope your treatments go well and you avoid as many side effects as possible. Take care
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Hi mks1282,
I start early Feb but as you seem to be on the same regime as me Iām stalking all your posts -hope thats ok!
chlorohexadine mouthwash - was this prescribed and for what reason please?
I especially value any and all information on your experience and tips. I know everyone is different but I like to prepare and especially as Iām hoping to only really take the immediate week after my infusion off work and work the week leading up to the next. So it was helpful to read that your 2nd was delayed.
I work from home, my own business and itās appointment based -never more than 4 hours a day- sometimes just 1 hour- hence the optimism but Iāll have a better idea after my first round I guess.
Thank you for openly sharing your experience
Glad you felt more in control Sarah. So when did you go in for the last treatment? Strangely, I had also emailed Paxman last week and explained my frustrations. She said I should use a scarf to tie on the outer grey cap if I feel itās not fitting properly.
How are you on the Taxol, have you been experiencing many side effects? X
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Hi Elivi,
Good luck for tomorrow. Iām on the same regime as you and started on the 10thJan.
Mine was stage 1, grade 3. HER2 negative.
My second round of EC is 31st Jan. Are you cold capping?
Be interested to know how you get on and the side effects you experience. The steroids will certainly keep you going for a couple of days post infusion! X
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Hi healing24
Thatās more than okay - I started on 1 Jan so spent (and still spending) lots of time reading through the December starters threads!
I think the mouthwash is usually only prescribed when you have mouth problems - such as ulcers, thrush etc., but I had read about it and bought some myself from the pharmacy and have been using it from the start. I did still have a bit of a strange feeling in my mouth the first week - like Iād tried to swallow a tissue is the best way I can describe it - but nothing worse than that, so am sticking with the mouthwash and have now asked for it to be prescribed. Iād also been recommended a soft tooth brush and biotene toothpaste (for dry mouth) and have been using those too.
I havenāt been working, but think my energy levels would have allowed me to meet the commitments you describe from the second week. It takes me a little bit longer to get going in the mornings than usual, Iām ready for a sit down by 4 and Iāve found I need to snack regularly to keep energy levels up, but have walked and done yoga everyday and been able to do some study on a couple of online courses I am taking. If you can arrange appointments around your good times, it sounds doable!
Hair has definitely started to shed a fair bit over the last few days - Iāve got plenty to spare so not noticeable yet - going to try cold cap again tomorrow and keep an eye on it for the next week or so and see how it goes.
Will be interesting to see what the zoladex adds to the experience, as I am probably more worried about the menopause and side effects of that as I am about the chemo itself. First one of those tomorrow, so weāll see.
Hope thatās helpful - as you say, bound to be slightly different for all of us, but am very happy to answer any other questions if they occur to you!
Hi Alex2, aww thank you so much and so good to hear that we can compare notes being in similar plans for this journey.
I have not been told what stage my cancer is (I know the grade is 3 as mentioned before) but I have asked if I will likely get offered a scan and they said no since it is localised (not considered significant in the lymph nodes since found micro particles). However oncologist said I will likely have radio after too. Is it the same for you?
I am indeed trying the cold cap but also got a wig just in case. I am very fortunate since my husband had added the family to his workās private insurance so I am going through this privately and I believe the nurses looking after me are very well informed (they even spoke to the Paxman owner directly they told me) so I feel very well looked after but will report back. I had been watching these videos from the Cold Cap Club, which helped me significantly preparing: https://youtube.com/playlist?list=PLHIqPjTUcZkh4polu3AztEnrScm9GW7l2&si=ywFvRiYVKE5kMMpN
Will definitely update you on how I get on and symptoms. Please do the same, would be very interesting to hear. Great to know about the steroids!
I feel ready to start fighting back 
. Go us all!
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So helpful and thank you for the extra tips.
I actually start my Zoladex on 2nd Feb, about a week before my chemo. My 39th birthday is 5th Feb so chemo always had to start after that no matter what 
Have you had any neuropathy symptoms or tingling in fingers and toes?
Iāve purchased cooling gloves and socks. I get very cold and was considering not doing the cold capping but Iāve decided to be ābraveā (enough people tell us weāre brave for having cancer!) So cooling my hands and feet really seems sadistic for me but whilst I can wear a wig, the potential of any long term neuropathy is something Iām willing to try to avoid. Iāll wrap up and take that paracetamol!
Yoga and walking are my go tos too so Iām glad to hear youāve been able to do them as well as your online courses.
Thanks again!
Hi, Yes I will also have radio afterwards plus pills which I think the oncologist is still undecided upon.
I also have a wig in case! I watched all the videos and went very well prepared with a mirror, conditioner, spray bottle, heated throw, hot drink, cold drink etc but the nurse still managed to make a hash of my outer cap and then told me to stop messing with it when I attempted to correct the tenting at the back!
Good luck X
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Hi Amandaā¦what was your diagnosis? Iāve got surgery on Tuesday and will likely be having further treatment in Feb but I have no idea what that will look like yet. All I know is Iāve been told I will have some form of chemo because Iām triple positive