Sooner than I expected

Morning Csf

Sorry you're here and looking at chemo - just wanted to quickly come on and give you some support as when they told me I needed chemo it was one of the lowest times for me and took me a while to get my head round it.  Great that you're being offered it quickly even though it's a lot to get your head round.  Is it six doses?  It is tough (mentally more than physically for me), but you get through it and I'm so glad I did.  I didn't have a port, I wasn't offered it, not sure why.  Had my chemo IV and honestly it was a little tricky finding a vein some days, I had to sit with a hot water bottle on my hands to try and make them magically appear.  Other ladies had very prominent veins and it was no problem.  I sometimes wondered if a port would have been easier but sure someone with experience of that will come on and give you their view.  Both ways are probably a little uncomfortable at times, but very doable.  I didn't cold cap, and like you was undecided, but eventually decided I didn't want the extra time on the chemo unit (or the cold head) but that's just me.  I also didn't find the thought of losing my hair the worst thing, but I know for some women this is a huge factor.  Chemo made me feel grotty and tired after about day three or four for a few days.  By day 10/11 I was bouncing back, but found that as the courses went on, I felt more tired for longer.  I did manage to have my last chemo and went to a big event that evening knowing that the effects wouldn't kick in for a few days, and I was absolutely fine.  Got my fingers crossed for you that you'll get your weekend away, you will fall into a pattern of when you feel best in the cycle..  Chemo does pass and summer will be here before you know it and it will be done.  The nurses are brilliant and so are the other patients who are going through it with you.  Hope it goes well and take care xx

• Hi Csf  so sorry you find yourself here, however it’s a great place to find information to support you.

I was recommended to have a port based on a history of having trouble finding veins and being someone who bruises easily. Although I can’t compare it to having it intravenously, it worked really well for me. Getting set up for each cycle was very quick and after a while, I forgot the port was even there. 

I also cold capped and managed that just fine. The length of time you need to keep it on is influenced by the type of chemo you’re having. I had EC for the first four cycles and that seems to be the toughest on hair, so you need to have it on for a period before and after the infusion. I lost about 40% of my hair during this time but kept enough to make it less noticeable. 

During the second 4 cycles of Docetaxol, the wearing time was much less - my hair also started regrowing during this time so by the time I finished chemo, it was well on its way back to normal.

After my very first cycle, I didn’t actually feel too bad…it got worse as it went on because of the cumulative effect. Play it by ear but I hope you get to enjoy your break.

Wishing you all the best for your treatment and recovery x

Hi Lullabelle thanks for reaching out to me  I’m glad you got through it and here sharing your experience with me. I’ve managed to get some sleep after my last post and things are looking much more clearer now. Regards the cold cap and port,will definitely dodge those and stick with traditional method, after all I will have a wig (hoping it looks good) and I do like a turban so maybe round the house when I don’t go out.

I have to have 8 doses of EC-T, one dose a fortnight so will take 16 weeks. Then Radiotherapy for 3 weeks 5 days a week and finally hormone blocker for 5 years if not more. I’ll have a word with thnurses as even if I start next week I’ll have time to recover and still go away before my next dose  hopefully my hair doesn’t fall out straight away

scared times ahead but I’m in a better mindset. 

Best wishes x

Thank you so much I appreciate that you responded xx

Glad to hear you're feeling better about things.  Good luck with it all x

Hi Csf,

Hope you're doing okay 

I am having the same treatment plan as you so wanted to share my experience but remember that every experience is very different. I found what worked for me during my chemo but was helpful ready other ladies experience too .

I went for my pre assessment on a Tuesday and they told me then chemo was the Thursday! I had no idea it would be then. I was happy to get it started then it's over sooner.

I have finished my 4 ECs and having my first of 4 paclitaxels this afternoon! Eek!

I started off with the cold cap as I thought I would rather try it to see how it worked for me rather than regretting it when my hair fell out. You have to keep it on for 30 mins before chemo then during and 90mins after and it's longer for paclitaxel because it's a longer infusion time. I found it very hard. I wore it for my first 3 ECs then couldn't bare it for my final one. Made the experience way better and quicker. I have thinned a lot on top but got alot of my hair at front and back but expect to lose more for paclitaxel. Cancer Hair Care is a great website to read about cold cap  I'd say it worked for me but didn't make me feel well.

For the cannula again I done it for first 3 and then it was painful as got phlebitis! My oncologist worried me about a picc line to have at start so didn't get one. I now have one in and used it for my 4th ec and my bloods yesterday and it was great! So much easier! More maintenance involved in cleaning once a week and keeping it dry but worth it.

So my advice is that try something first if you're not sure and if it doesn't work then don't worry or be hard on yourself. During your journey you will find what works best for you to made a tough journey a little easier for yourself.

Wish you all the best for your treatment  xx

Oh ps: we are heading away next week for a chemo break not far from where we stay so its good to get a break! I usually feel more normal a week after chemo then got a week of feeling like me, bit more tired but that's manageable!

I am quite surprised your hospital will give EC through a cannula - my hospital are very reluctant to do so because of the damage it can cause. Ports are fantastic once in place - I have had one for almost 3 years (I am metastatic). Well worth going through the procedure to fit it. 

Hi

I started EC yesterday with the cold cap. I joined the Paxman cold cap FB page before - recommended by a lady on her and found it really helpful for tips.

I found it ok, added time on to treatment but I was in with a nice group of patients so went quickly. 
I was worried as it didn’t feel that cold, my hair is really thick so I’m concerned maybe the cold didn’t get through enough. There were two other ladies cold capping at the same time. One was doing really well the other lady decided to stop as too painful and she was upset her hair had virtually all come out.

ill try it as long as I can - going to lose my hair if I don’t and you can stop anytime it gets too much.

I have small veins too and they fitted a PICCline, it was absolutely fine, painless, mine was done under a local so really didn’t feel anything. They haven’t mentioned to me about having it flushed through though so I might ring to check on Monday.

I’m fortnightly for EC. Then onto Paclitaxel 

4 sessions of each

hope all goes well , you’ll make the right choice for you xxx

Hi Csf, sorry you are in this position, it can be a very stressful time. I went through chemotherapy myself from March last year until July, 3 cycles of EC and 4 docetaxel. I decided I didn't want to cold cap, so bought a couple of wigs and lots of lovely hats. I did decide on having a port fitted, and was pleased with my decision to do that. I had to have the first 2 cycles of chemo through IV while waiting for appointment to have the port fitted  Even after just two cycles my arm started to ache, this lasted several weeks, so for me the port was the right choice. As for the chemo, I did well with minimal side effects.. I managed to go out for a 2 1/2 mile walk every day with hubby, even the day after my chemo. I wish you well and hopefully you also will only have minimal side effect. If you do get any, your team will be on hand to adjust your medication for you. Xx

Hi Da1984 thanks for your lovely words. I have changed my mind and decided to try the cap. I informed the team and they are contacting me on Monday. Got appointment for a cardiogram on the 20th Febrry and nurse said next availability for port to be fitted is from 12th February so I can’t see me starting any treatment before then. Just hoping the port fitting doesn’t interfere with my little break away on 15/16th feb

Starting to look a bit clearer and feeling a bit more in control of my treatment, after all it’s my body.

I’ll keep you posted how I get on and hope you’re 2nd part of treatment is not too bad.

Take care x