Thank you @salbert, I managed to get dressed yesterday and make my own breakfast got out for a walk for an hour but very tired n the afternoon.
I feel much better today so now planning my time between now and the next one. My only consolation is that next EC will be my last if that drug and halfway through!
Im lucky as Iām not working so planning on spending next week in North Yorkshire at our caravan, first break of the year
How is everyone else doing?
Lots of love for second rounders coming up this week
I just wanted to ask about your experiences with the Filgastrim injections. Has anyone had any bone pain? I had my last one of 7 last night and woke up at 2 this morning with bad pain in my back and hip joints - it came in waves not unlike labour pains .
Checked my temperature which was fine so had some paracetamol and a hot water bottle which took the edge off but itās back again and it seems to be in my shoulder joints to now - pain killers are helping but I went to take the dog out and didnāt get as far as usual because of these aches. Iām hoping they might ease off as I donāt have any more injections this cycle.
I have rang my oncology unit and someone is going to call me back but just thought Iād check how everyone else has found them?
Hi @kitty77, read your post and wanted to say I had this the first time i did my filgrastim injections and it happened on the final injection. Woke in the night with quite severe pain in my hips and top of thighs. Luckily paracetamol took the edge off but I also struggled going out a walk because every step felt like a jolt of pain.
Luckily I only got it this bad this first time and never experienced it again as badly. Iām on my last ever filgrastim injections now so Iāve had a few doses if these in the last few months.
Strangely the day after when I had all that pain I also got my period so Iām not sure if that played a part in why it was so sore. Iām taking Zoladex injections to put my ovaries to sleep and Iāve not had another period and like I said the pain hasnāt been anywhere near as bad. Not sure if itās related or not.
Hope this is a one off for you and it starts easing off soon xx
Thanks for replying @clay83 hopefully it will be a one off! All these different side effects are a bit of a minefield arenāt they!
Painkillers are definitely helping I was concerned in case it gets any worse but so far it doesnāt seem to be - hereās hoping it will ease off over today as that was my last injection this cycle.
Also good to hear that you didnāt get the pain as bad going forward hereās hoping I am the same
@kartoffel Thanks for the Headwrappers link. Iāll definitely be checking that out. Nice one. Were your bloods ok?
@sammybp Well done on getting up and having breakfast! Baby stepsā¦ Iām most envious of you being in North Yorkshire in your caravan. How lovely. I think itās important to have these little breaks to get us through. We have a camper van and Iām on my husbandās case to get the MOT done because I think it will be a godsend over the coming months.
@kitty77@clay83 YES! Filgastrim and painful hips = tick. All I could do that day was lay on the sofa as I felt so bad and yet it was painful to lie down because of the hips. So a lose-lose situation!
I have my second EC tomorrow and I am going to be prepared this time in case I get that horrid steroid crash again. Apparently they can cause severe mood swings in some people and it would appear that I am that nut job! I went from feeling euphoric and marching round the Titsey Estate and cleaning the kitchen in the middle of the night to screaming abuse at the phone and crying for a full day convinced my husband would get sick of me and want to leave. Which is ridiculous!! Now I see it was all steroids but they say they are going to relook at this tomorrow. I am going to have all my favourite Musical Theatre songs at the ready as usually I Am What I Am and Cabaret are instant mood lifters for me. Iāve warned the neighbours.
Oh myā¦tomorrow approaches. Deep breaths. Big girls pants pulled up. See you on the other side, my friends.
xxxx
Bone pain is often the worse than chemo I found. I had a few horrible ones where early on I had to come downstairs lying on a yoga mat on the floor and not a bed cause every single move in the bed used to send me shooting bone pain. And then, some other time, I was absolutely fine!!! Go and figure. Check w your team if you can take loratidine it helped me and take regular paracetamol even if you donāt feel the pain.
Just know it will be different each time. Warm bath helps w epsom salt and keep warm. Having had those during the winter, I would wrap myself as much as I could even inside and would have hot water bottle w me in bed or electric blanket during the day. All the best xxx
@salbert I havenāt been told anything yet, am meant to be seeing my oncologist this afternoon but from what I can see when I log in most of the numbers look ok
Had my second EC session last Thursday and today feeling completely lost with no confidence. My hair is now thinning a lot and my eyelids are very dry, is it just me having a bad day or does anyone else get days like this?
Need some positive vibes to try and get out this slump.
How you feeling today? Iām sending hugs . It is definitely not just you who has a bad day. I have days where I struggle to be positive and just need a good cry and Iāve only completed one EC session so far.
I think itās perfectly normal to feel this way the diagnosis and subsequent treatment turns your life upside down and it is hard going.
Have you been on a look good feel better course? Iāve done a couple and would definitely recommend- they are full of tips and ideas for makeup to boost confidence and various head covering options and how to style them - all the women on the one I attended were at various stages of treatment and it was really good to get tips and feedback from them too.
I also try to do a couple of things each day that completely takes my mind off breast cancer - for me thatās getting out for a walk with my dog with my music on and a decent book I can get engrossed in.
Thank you so much for your reply, sometimes it does feel like you are the only one that has those days.
Feeling a bit more positive today, going to put one of my lovely scarfs on, might even stretch to some make-up and go out for a walk with my hubby, then lunch somewhere.
Thanks for your suggestion about the look good feel better course, I waa going to save that till nearer the end of my treatment but maybe I will look at going sooner.
Positive thoughts and vibes to all of us. X
Also had my second EC yesterday and felt rough last night. A bit better this morning after taking meds and had a small breakfast. I am shedding a lot of hair as well -started last Saturday. My hair is already thin and became thinner due to shedding. Still had the cold cap yesterday. We are all in this and we can fight this battle. Letās all be positive and strong.
Take care.
Definitely itās a mixture of highs and lows. Getting something that will help divert your mind is of good help. I started to learn knitting and did few of light gardening. I go for a walk regularly as long as I able to.
Also, Iāve registered a session with look good feel good too. Thanks for the feedback.
Take care. x
@starapple thank you for reaching out. It is an emotional nightmare at times but we will all get through this together. Sending love and positive vibes. X
Look good feel better is amazing. If youāre doing the make up one take your own brushes because theyāre not allowed to touch you at all, infection risk. The goodie bag is really lovely high end products, loved mine xx
I have lots of bad days !!! And have definitely not been a BC warrior ?!! More of a blubbing wreck !!!
Weirdly Iām starting to feel a bit better now Iām in treatment and feeling physically worse !!!
I think that a lot of that hype around BC and the forums etc is unrealistically positive as if we should all be accepting our diagnosis and rushing out to do the moonwalk !!!
If anyone suggested that to me Iād deck them !!!
I think itās completely normal to have good and bad days and sometimes bad and worse days.
Iām slowly improving with time and meds (3 months since diagnosis, 2.5 since surgery, 2nd EC).
I consider if I go a few days without crying Iām doing ok, besides which I canāt afford a face lift !!!
Overall Iād describe it as a rollercoaster of emotions xxx
Loratadine tablets (otc,)and paracetamol was advised for bone pain from the filgrastim.
Itās an inflammatory reaction apparently as the bone marrow is stimulated to produce white blood cells, so the antihistamines help like loratadine.
@Vibby I love this post! Itās so true about staying positive, kicking cancers butt and all the walking, cycling and other activities you can do to raise money and awareness. (All of which I completely believe are wonderful) But the reality is very different. Iāve really struggled after round 2 with my mental thoughts and physical ability so itās lovely to hear others are the same.
Iām quite isolated as new to my area and no family, my partner works long days so Iām struggling with not having anyone to chat to or have a natter and a cuppa with.
Any recommendations from the group on how I can find coffee mornings, support groups etc?
Been reading this weekās posts since I was very disconnected, hope youāre all doing alright
@salbert oh my the cowboy hat story made my morning hahah I love it!
@shonas itās 100% normal to feel that way, there will be days that are worse that others and days where you feel much better. All ups and downs but youāre definitely not alone. I had a little breakdown a couple of days ago because the skin behind my left ear got super dry and started peeling out of nowhere
I finally had my third round of weekly Taxol this past Tuesday, and hopefully I can do it next week as well. Definitely need to step up my hydration game though as I tend to forget to drink after a few days after chemoā¦
My hair has also still been falling out nonstop (probably lost 50%). Iāve cut it shorter but Iāve still got a full head of hair. Except at the front, starting to have a sort of receding hairline heh
First picture is 3 days after my second infusion, when it starting falling out like crazy. Second one is from yesterday, 3 days after my third infusion.
In the village I live in we have a very lively Facebook group !!! Can be a positive and a negative thing !!!
Out of some of the posts of women looking for friends a local social group was formed, where we have coffee meet ups, lunches and evening events. Nothing to do with cancer but very welcoming. Might be worth searching for something similar in your area.
I think that on the Macmillan website thereās a database of local cancer support groups too. I found a BC one in my area that I emailed but havenāt met up with yet.
Good old Google usually gets a few hits xxx
got out for a walk for an hour but very tired n the afternoon.
.
and I am going to be prepared this time in case I get that horrid steroid crash again. Apparently they can cause severe mood swings in some people and it would appear that I am that nut job! I went from feeling euphoric and marching round the Titsey Estate and cleaning the kitchen in the middle of the night to screaming abuse at the phone and crying for a full day convinced my husband would get sick of me and want to leave. Which is ridiculous!! Now I see it was all steroids but they say they are going to relook at this tomorrow. I am going to have all my favourite Musical Theatre songs at the ready as usually I Am What I Am and Cabaret are instant mood lifters for me. Iāve warned the neighbours.
