September 2024 chemo starters

[rosegarden1]

Good evening ladies,

just catching up after a really tired second post chemo day. I think I overdid it a bit with a short walk with a friend today and then some pumpkin carving with my son and a bit of tidying up - just feeling really worn out and exhausted sleeping seems tricky still to. I will ensure to rest more tomorrow and give my body a break.

thank you to everyone sharing their experiences and feelings.

sunshine I’m so sorry to hear about your troubles. A big gentle hug.

I just checked and my haemoglobin levels before my second cycle and it was 119. My neutrophils had recovered too.

Being anaemic is scary and I had this following some surgery for fibroids some years ago and was very close to getting a blood transfusion.

My Regime is Docetaxel/cyclop… 6 rounds. The lovely nurse told me that you’re most likely to have an allergic reaction on the second cycle but I was okay- just my face is looking a bit red now but otherwise okay.

Common side-effects I experience include headaches and some bone/joint pain and nausea, but I think the latter could be the steroids

One bad experience I had in cycle 1 with the pre-Filgrastin injection to boost my blood cells waa that it was followed by I excruciating pains in my legs and feet - horrible.

We have now changed this in my second cycle to 5 daily injections and I’m feeling much improved and have only light pain in legs .
I think the cyclizine anti-nausea medication is also a really good one. It works better for me than the Don Peridon.

And yes, the hair shedding is sad and difficult to cope with and loosing lashes too. I’m hoping that I might keep some hair even though I hate the cold capping first 15 min but I want to stick with it.

I managed to squeeze my earphones into ears with the cold cap on and it worked alright they’re quite small ones. Bit emotional about the wig fitting. They were really nice in the salon when I called and theysaid they are keeping the wig for me for six weeks and in case I don’t need it I won’t need to pay - and they accept the NHS voucher.

Feeling a Sense of relief that the second cycle is now on his way, hops I will be okay this time staying out of hospital especially as my birthday is coming up at the weekend.

Thinking of everyone and wishing you and sending love and wishes that we all get through this okay. The photographs were lovely and made me smile.
I very much love the idea of meeting up in person when this lies behind us and treating ourselves to something very lovely together. Really good idea.

So Testing times so it is good to feel and know that we are in this together.

Couple of practical tips, I found the skin food lip balm from Weleda , fantastic against dry lips in the pepper Smith, peppermint gum great against sore dry mouth. And the shampoo/skincare series id great. On special offer at Morrison. Had it delivered on Amazon Prime today. Easy Peasy. Much love, Rose

[lizk]

Love it @luckyduck1 , I have also discovered Twisties and ordered velvet ones. So much easier than trying a headscarf!

[lizk]

Thanks for the tips @rosegarden1 and hope you manage to rest. I find pacing myself really hard, when I get a bit of energy I tend to overdo it. In fatigue management it’s referred to as ‘boom and bust’.
Take care

[lizk]

Sending all the good luck vibes @sharlou .

[bluesatsuma]

Hi ladies, a little update for you. I had 1st docetaxel last friday. It went fine but on day 3 i did get avhigh temp of 38.4. It wasnt neutropenic sepsis but they kept me in for 2 nights on a trolley in crowded ward. It was hell. IV antibiotics. Home now feeling much better. The dr thinks it is a reaction to the docetaxel. I may have dose reduced and steroids upped next time.

Just wanted to remind you all that you must keep an eye on your temperature and call red card if you have 1 red symptom or 2 amber. Xxx

[lizk]

@bluesatsuma glad you are feeling better and hope next round is kinder to you .

[sonica]

I have cold capped throughout, Had 4 dense dose EC and 1 Paclitaxel so far. Can’t say I am a fan and can’t wait to take it off each time as gives me a headache and knock me about a bit… But I get through and always feel instant relief once it’s off.

I asked about protection as my hair is very fine and have shed quite a bit … Was about 50% at cycle 3 but with quite a bald patch on top. When I asked the team, they suggested a surgery cap (very similar to a shower cap but soft thin fabric (like a thick wet wipe or disposable gown type material).

I had to wait to get one but came away with a couple of spare for my next treatments. I’ve had 5 now and would say I have about 1/3 of my hair but some very sparse patches mainly on top.

Be sure to ask for something to protect your scalp. Good luck with it all

[epic1]

@bluesatsuma glsd you are home now and feel a bit better. How awful that you get put on a crowded ward - I thought you should have been isolated as you are at risk? Rest up xx

[luckyduck1]

Glad you’re home and ok. Take it easy. X

[sonica]

Hi there

Just reading your post about haemoglobin. I have a blood disorder that means I have chronic anaemia, so my haemoglobin is barely at 100 on a normal day (pre cancer and chemo)

Mine dropped to 84 and was advised if it dropped below 80 I’d need a blood transfusion.

After Cycle 2 it dropped to 76, so I had to have a blood transfusion.

It sounds quite scary but it’s really straightforward if you have a picc lin. I had to go for blood matching ( just a couple of minutes for them to take bloods etc) and mine was administered straight after my 3rd chemo treatment.

I was grateful that by having this my treatment stayed on track. It was another 3 hours on the appointment but well worth it.

My bloods have been stable with haemoglobin being 84 after 3rd and 4th cycle of EC. I am obviously on watch each cycle but don’t have any concerns if they drop again, I am sure another transfusion will be recommended and I’ll gladly take it to keep on course. Obviously I’d prefer not to have to but really was sraight forward.

Good luck, hope you manage to stay the right side of the numbers, but don’t stress if it goes lower, the team will sort you out.

[sharlou]

Oh no! Glad all is ok and you’re back home

[rosegarden1]

Good Morning Blue Satsuma and everyone

So sorry to hear about your Docetaxel issue and hospital stay and glad you are back home. I had a similar experience on day 4 of my last cycle, and ended up in hospital for 6 days - as I turned severely neutropenic while there for two days on Antibiotics IV. And I too stayed on two very busy A and E wards just in a cubicle for the first two nights which is scary. And yes when one gets fever, important to call the emergency number and get to A and E quickly ensure it’s not neutropenic sepsis and gets treated quickly.

It is day four of my second cycle today and feeling knocked out, tired and bone/joint pain, headache, and bad constipation night .So won’t be doing anything today and wig appointment needs to wait for another week. last time I started to feel improved after the first week, when neutrophils came back and hope that will be the same again. fed up with feeling sick and poorly and not sleeping good but all for the greater good . Take care everyone . I hope you have a good weekend . Much love , Rose xo

if you use ear thermometer, worth remembering that it is more sensitive and will show higher temperature compared to the NHS standard thermometers - measured under tong or arm. In my case difference between digital under tong measurement and ear measurement was 0.5 degree.

[bluesatsuma]

Hope you feel better soon @rosegarden1. My hospital uses ear ones too. I was 38.9 at highest. Today is 36.5 so i must be improving. Still feel so weak though. Docetaxel is a very different beast to EC! Xxx

[rosegarden1]

Thanks Bluesatsuma; good your temperature has come well down. Mine is okay for the moment but feeling pretty rotten and beaten today. Muscle pain and fatigue getting worse. Fingers crossed it will all ease how a quickly. Chemo is tough stuff.

[Zainab]

Finally have go ahead to restart chemo next week on EC and Docetaxil after what will be five week break due to liver issues. Bit apprehensive about starting again. For those on 3 weekly EC what tends to be your worse days? I have a friend wanting to visit so want avoid worse days. If that possible.

[millyk]

@Zainab I’m on EC and tend to avoid meeting people for the first week.

My worse days are days 3, 4, 5 and 6. Although, my symptoms haven’t been too bad and I think we are all slightly different.

[epic1]

gutted, I was told by my oncologist a few weeks ago that I could switch from docetaxcel to paxitaxel after my EC but would have to decide at my next review before chemo which was today. My oncologist was not there today so her locum said she would check with her and call me back as its unusual - now my oncologist denies ever saying it. My husband is fuming as he was there and heard everything that was said. Apparently I have no choice but to do 3 x docetaxel after my EC. The reason I wanted the change is because i went private to check my whole treatment plan through the Royal Marsden and they recommend paxiaxel instead to their NHS patients and private patients as its kinder. The locum did say I could try and fight it - I am just so angry that they can say one thing and then deny it. Its not right - i dont need this stress.

[pod123]

Hi @Zainab . I’m on 3 weekly EC. After my first cycle on a Wednesday my worst day was the Saturday and by the Monday I felt reasonably ok for visitors and getting out and about. After my second cycle (moved to a Thursday) my worst day was the Sunday as expected, but Mon and Tues were pretty rough too. I’d say I was only starting to feel human by yesterday, although I probably could’ve managed a visitor on Wed. I’ve been told days 7-14 are when infection is most likely so to avoid crowds and be extra careful. Last time I didn’t really stay in or anything and I did end up getting a head cold. I think the safest time for socialising is between days 14-21 and that’s definitely when I felt most normal and had most energy.

[bluesatsuma]

@epic1 - jumping over from August group. I have done 1 docetaxel and i have been so ill. EC was a doddle comparatively. I have been told they will consider paclitaxel instead as my side effects have been so strong.

If your first docetaxel is hard, they usually change you to paclitaxel.

Hope you get it sorted xxx
Hope next round goes well xxx

[sharlou]

So something weird just happened. My buzz cut is at the stage where it’s starting to fluff up in all directions so I thought I’d just slap some water on it and pat it down. As soon as the cold water touched my head I felt instantly sick and thought I was going to hurl all over the bathroom. I think the cold cap has psychologically damaged me for life