Thanks for the info and advice re the injections, Shi, pastamissus and drummerswidow. It doesn't sound so scary now. After your input I'm feeling all She-ra at the moment and think I'll opt to do them myself if its going to be awkward to get district nurse round!!
I'll check out that wig site as well Shi. I do have a wig through MacMillan, which I really like, but like you I wanted a couple so I could have a change.
ajorchid and catlady37 ...I think a lot of us are at that stage where we've got the hurdle of the first chemo done and now we're waiting for the hairloss. My heads been tingling the last few days and then today strands have started coming out. Its horrible and despite the fact that I know its going to happen I'm gutted!
I'm sorry to hear about your abcess Ajorchid. I hope the antibiotics clear it up. Thats me, you and marycamille, as far as I know, who have had their second chemo postponed. Its disheartening. I've now added 4 weeks to my proposed finish date, just so if I do finish sooner than that it'll feel like a bonus!
Take care all xxx
Just stopping by to say "hi" I haven't posted much but I do read what's going on and send positive thoughts to everyone here.
I couldn't have mt second round of chemo on the 27th because I've been on antibiotics for an abscess (right next to my breast tumour). Hopefully, my next scheduled appointment for the 3rd of January will go ahead as planned.
I'm also at the waiting for my hair to fall out stage. In a way, I think it will be a relief now when it happens
the injections are small thin needle, you do them into the fat in your tummy. If you're brave and go for it, they really don't hurt (and they don't hurt more when you press the plunger, which most injections do). If you're a bit more tentative then you feel the needle going in more, but it's still much less painful than getting blood taken. Also, the skin over your tummy isn't very sensitive, so you really don't feel much there anyway.
thanks for putting my mind to rest re the injections. I think this whole expereince is going to make us all braver! Its at least a week away yet so I'm just going to focus on making this next week nice ...and also as productive as possible as I'll be waiting around for my next chemo! I hope alls well with you xxx
Angelblue. The needles aren’t very big at all. I did my injections in the morning at first so I would remember to do them. The chemo nurse advised I did them in the evening as I was having pain. See if it works!
marykamille - I'm so sorry to hear that its not going well dental wise. Usually dentists have appointments set aside for emergencies. Surely he could use one of these, as you would think that having chemo delayed is an emergency. Whilst I was at the dentist pre-chemo I heard the receptionist telling someone on the phone that the next available appointment was a couple of weeks wait but if they phoned and said they were experiencing pain they would get seen straightaway??? I hope you're not feeling too downhearted but I know its hard to keep on picking yourself up. Mine is also delayed for at least a week but I think it could go up to 3 weeks from what I've read. Its so frustrating with moving targets all the time when we just want to get the chemo over with and move on!!
drummerswidow - thanks for info re injections. Oncologist warned about bone pain. Is that why its better to do it in the evening or just your personal perference? Are they full size hyperdermic needles or just like the epi-pen? I think I may be able to manage an epi-pen type needle but not a big proper one! xxx
Have not been in here for a while but catching up on everyone's experiences. We're a brave lot, aren't we? Good wishes to all of you for New Year and hope you can celebrate a little. Hope you all managed to enjoy some part of Christmas.
My major bugbear at the moment is dental problems. I saw dentist & hygienist before I started Chemo in December and used hospital mouthwash 4 times a day as precaution, but developed an infection almost overnight - it was the day I saw my oncologist in preparation for my next cycle on New Year's Eve and little did I know that later on it was going to be downhill.
I managed to get an emergency appointment at the dentist on Christmas Eve and antibiotics. However, I need an extraction. I only ever had one before and that was decades ago!
This means my 2nd cycle is delayed. A lot. Dentist can only do extraction on 9th January earliest. Then I need a full week before I can see the oncologist again because he needs to be sure I have a healed wound and no further infection before I can begin my next cycle.
I never thought I would have this disruption but maybe it's better earlier than later (I have 6 sessions in all) as I will be weaker as time & cycles go by.
No nausea or vomiting with 1st cycle - that's a plus. Only hope this doesn't mean an endless problem with teeth! Hasten to reassure me someone!
Am now day 11 post FEC (first cycle). So far I've only had the overwhelming tiredness and zero brain day 4/5 - seriously, not enough brain to be bored or listen to the radio! Listened to talking books on my ipod whih I practically know off by heart I've heard them so much. Anyway, brain now back and able to read decent books again :-)
Last night very sore hips and sternum (breastbone), presume this is a side-effect of GCSF (had this for 7 days, no problems until last night).
Apart from that I've been amazed by how few side effects I've had. Oh, extremely bizarre vivid dreams days 3 and 4 thanks to steroids!
Have got a multi-coloured 80s Mullet wig for when the hair falls out as well as the sensible one and loads of hats and headscarves.
Hi Angelblue. I’m sorry your chemo has been postponed due to your low blood count. I inject with G-CSF on day 5 for five days each cycle. I’m lucky because I used to be a nurse so have no fear of needles. I do the injections in the evening but find I do get some pain in my hips but that’s a side effect of the drug. Hips and sternum are where we have a load of bone marrow to make the cells.
It is confusing when the oncologists use use different ways of describing the cancer. I have an invasive cancer which is common, but then a micropapillary cancer which is not. In the end I know I need treatment so have not pressed more about the finite details but it is good to know. We need to get our heads around what’s happening. Hope your blood count picks itself up xxx
Hope everyone is doing ok. Bad news for me yesterday. My white blood count too low so my 2nd chemo been postponed for at least a week. Also I will have to have the 5 lots of G-CSF injections after all susequent chemos. I know some of you are also having these injections. How are you doing on them? Do you do them yourself or does district nurse/someone else do them? I'm very needle phobic so don't think doing them myself will be something I could consider. I'm hoping I'm given the option of someone medical doing them!
Kc72 - thats really kind of you to share information about hair loss. I know it's imminent for a lot of us and the waiting and dreading it is the hard part. It must have been a traumatic experience to lose your hair so young. Its amazing that you've found such realistic wigs that your work colleagues don't even realise. Maybe you could tell them you're using the cold cap and you've managed to keep all your hair?? I looked on the Trendco site after you mentioned it. A lot of the wigs do look realistic and not 'wiggy'! Do you go for real hair or synthetic?
Rapunzel 2018 - my oncotype score was 31 which is the start of high risk, although my oncologist keeps referring to it as 'high intermediate'. Its confusing as it does look like 31 is high intermediate on the graph on my oncotype report but I've checked with Oncotype themselves and they confirmed it is high risk. I need to be brave and tell oncologist its high risk not high intermediate but it feels hard to disagree and I bottled out of it yesterday! Although it wouldn't make any difference to my chemo as he confirmed that due to my peripheral neuropathy I wouldn't be offered Taxanes. Its so random ..and annoying... in my 30's I got a rare illness (Guillain Barre Syndrome) which left me with peripheral neuropathy and now 15 years later its impacting on the treament I can have for breast cancer. Oh well...C'est la vie!! I'm doing all I can do diet and healthwise to give myself the best outcomes. Let me know what your oncologist says about your chemo regime though..and whether or not she believes taxanes would improve outcome. I really hope that IVF is successful for you. It must have been so stressful to have it after your diagnosis. But its good that you know that having children isn't out of the question once this is all over.
Hi Rhubarb, thanks for your info, I will be going through the same cycles. Did you manage to work at all during your chemo, like during your better weeks, or did you take the whole time off?
Thank you Rhubarb for sharing your experiences I find it really helpful to know as much as I can so I'm prepared for what's to come
Also it's nice to know your back to normal and your hair is healthy again that helps me stay positive ☺️
Very helpful thank you. Tell me about the constipation!! LOL. This is after 2 cycles. I’m making a note of symptoms etc. to help through my cycles of treatment.
Having been through 6 cycles of FEC-T and now back to normal I thought I would give you a few pointers.
Hope this helps some of you,
Thanks Drummerswidow, I look forward to my party. I do not have scarves, I have seen the videos but I don't think they suit my style. I do have a buff (kind of tube of t-shirt material), NHS wig, and beanies and hats.
Hi Wahini. Have you got a scarves? There’s some YouTube videos which are good about scarf tying. Enjoy your party x
After 2 weeks and 2 days since my first chemo, my hair has started to fall out. I hope I have enough left after I wash my hair today because I am going to a party this evening. My hair has been looking real good, not lanky and greasy at all as I have read happened to others on this forum but quite shiny and full. Anyway, I bought a hair clipper in Lidl yesterday for when it gets patchy. I did not try the cold cap.
Morning all . Had my first FEC yesterday morning. All seemed to go well. Tried the cold cap which I found horrendously uncomfortable for the first 15 minutes and it also leaked at the back so had a cold back despite having towels. Will take change of top next time. Was ok the rest of the time.
Got home about 5ish, had evening meds but still got very nauseous. Went to bed early and fell asleep but awoke in the night still feeling very sick. I found drinking plenty of water helped.
Got up this morning, felt a bit sick. Had morning meds of Emend ( I see someone above has said it is a good one). And 4 steroid tablets so hopeing today will not get so much nausea.
One of the drugs made my wee a bit red. I was told it would be back to normal by next day but its still a bit red. I feel Im drinking plenty of water, so hopefully that will subside today too .
I just read your post and I can totally relate to how your feeling at the moment I've had my up and down days since I started my first chemo on 21st
It definitely helps me when I read someone else is feeling the same way as me
I felt sick the first day but I've been pretty lucky I've not felt too bad just tired and ache and I have more of a appetite then normal so making the most of it
As for the hair loss that's the part that is actually making me stress at the moment as I just keep thinking how I'm actually going to cope seeing myself with no hair and seeing my hair fall out! In a way once it's done and gone it's one less thing for me to stress over or so i keep telling myself! My hair is greasy and lank too which I've never had before. Im still waiting for my wig to be ready for me to pick up and I hope and pray it's ready before my hair falls out but I do have a head wrap for home
And I definitely think hanging onto the more positive days will help get us through. I'm finding just the smallest things that put a smile on my face at the moment are more valuable then I ever noticed before like still being able to laugh at something silly, a hug from my partner or just my cat sat purring on my lap it's these little things that I know will get me through my down days
Much love xx
Hi all - just wanted to "pop in" - it's difficult to keep up with where everyone is in their treatment cycles but reading through the posts just goes to show how different people's experiences are. I have been pretty up and down emotionally since my first FEC on 20 Dec. Physically I have been really nauseous but that (hopefully) seems to have passed and I am eating OKish now. I've had a horrible patchy tongue (nice) but was provided with some drugs for that and that seems to be getting better.
I haven't cold capped so am waiting for my hair to fall out - even typing that feels surreal. I'm on day 8 and no sign of any loss yet but my hair is SO lank and feels really greasy. I've got a wig and scarves and things ready - but I think I'm going to struggle with the reality of dealing with them everyday rather than just trying them on.
However - today and yesterday have felt more "do-able" so I am trying to hang on to the more positive days.
I'm not really a massive social media fan but it does help to know that there are other people going through this.
Thank you! I didn't get Akynzeo but had Metrochlopromide (plus stronger anti-sickness meds). I was told to take Metrochlopromide only for three days after the chemo but have some left over and have been wondering whether I could take one if needed. Will talk to the pharmacist about the anti-sickness meds before the next chemo.
Yes, IVF on top of (or in between) everything else was, let's say, an 'interesting' experience, but (after much soul searching) I chose to see it as something positive to do amidst all the other stuff.
My Onc recommended FEC as she considers the toxicity level of FEC-T as potentially too high in my case (I was recommended chemo primarily because of my Oncotype test results (25) and because I might want to interrupt HT after two years in order to try to get pregnant ).
However, I'm going to have another word with my oncologist about the regime because I've read (and been told by other oncologists) that T might be of additional benefit in cases like mine. She is happy to have the conversation - I've already got an appointment in January.
I'm also aware that there are significant differences when it comes to which chemo regimens are recommended both within the UK and beyond (for instance, guidelines between Germany and the UK differ, and treatment in Italy might be different from treatment in Denmark). Having said that, If you already have peripheral neuropathy, then T would be out of the question not only here but elsewhere also.
In the end, I think it is important to weigh up risks and benefits, and quality of life. I'm still pondering about that question.
Yes the bleeding has stopped thankfully, but thank you for your good wishes. It does get hard to keep up with where everyone is at, but its nice that its such a supportive group of women on here.
It must have been hard for you to be thrust into IVF on top of the breast cancer diagnosis. I looked into IVF in my late 30's/early 40's but decided to just let nature take its course and hoped for the best. It didn't work out for me kidswise but as it was my choice not to do IVF I was ok with it. As luck would have it though I'd just booked onto a fostering/adoption information evening when I got my cancer diagnosis...so that option is now on hold!
I believe you said you are doing 6 x FEC, which is the same as me. A question to you and all the other ladies just doing FEC. Do you know why you've been put onto just FEC as opposed to FEC-T? I know I'm just FEC due to already having some peripheral neuropathy, otherwise I believe I would have been FEC-T. I've been doing some research into chemo drugs so curious into reasons why other oncologists have gone for Fec over FEc-T.
love to you all xxxx
ps - my hair has started prickling...yikes!!!!
I'm so so so sorry to hear about your experience, and I really feel with you. I keep fingers crossed that today's blood tests will not show you're anaemic (although from what you're saying it rather sounds as if you might be). I was explicitly told to report any unusual bleeding (that lasts for more than five minutes) - and from what you describe your bleeding has definitely been most unusual. Is there anyone - your oncologist, a BCN - you could get in touch with about how this situation has (not) been handled? I understand the limits of protocol/tick-lists (they seem to be everywhere), but common sense is also needed, especially if someone clearly is in need of help.
I hope you won't have to deal with such a response from anyone in the team looking after you again. It's so hard to be in this situation, and it makes it much harder to muster the energy to be your own advocate as well. I remember thinking that I really wanted my bleeding/period to have finished before starting the first round of chemo (I had had an emergency IVF and expected a heavy period); nobody else seemed really concerned about that but I think they should listen to what we're telling them, too. We know our bodies best, after all.
Wishing you much strength (and good blood test results),
PS: Just realized I had been looking at an older part of the thread and that some of the issues have been resolved now. Still - all my good wishes stand, of course!
I haven't experienced the tenderness, yet, but I was told it's one of the tell-tale signs of the process of all hair coming out. The hairdresser - who is looking after me/my wig - also said that they would not recommend shaving the hair but having it cut really short (all the hair will go eventually, but cutting it really short makes it easier to deal with what's happening - psychologically as well as practically). Am waiting for this to happen with a bit of trepidation, I confess.
All the best,
Hi Shi - and everyone else,
Thanks for sharing this re UTI. I experienced a burning sensation when urinating right after the chemo and since I just had had a UTI I rang up the cancer helpline and ended up back in hospital for part of the night just to be checked and given more antibiotics to look after the bladder infection. Just finished taking the meds yesterday - hope it's now all sorted but would definitely go back again if needed.
I've also had a bit of a cold these last two days, and everyone I've spoken to on the phone (to ask for help re when you need to go in and which symptomps you can manage yourself) has been very nice and helpful. It's my first cycle of FEC, and I (and my husband) am (are) still very much figuring out which of my 'symptoms' are 'normal' side effects of chemo and which could point to a more serious problem. Finding it a bit nerve-wracking to be honest but at least I know that there definitely always is help out there.
Side effects have been ok so far, nausea and tiredness are probably the most noticeable so far (I don't like either but really dislike the first). The steroids disturbed my sleep quite a bit but gave me the energy to make more of the festive period. Once they had left the system, I noticed how tired I really am.
Let's keep fingers crossed the cold symptoms disappear fully and the legs recover from their wobbliness, too. Might ask for stronger anti-sickness meds for the next cycle. Does anyone get Emend? (I've heard good things about it).
Warm wishes to everyone,
Just wanted to thank you for your kind thoughts and say that I'm also in a similar position age and treatment-wise: (up to) 6 cycles of FEC, then radiotherapy (not sure how many), and then HT (for at least 5, possibly more years). I just turned 41 this November, no kids (yet - haven't quite given up hope, though).
Hope that your festive period has not been marred too much by SE.
All the very best,
Had my first FEC on 20 Dec. Day 3 and 4 I spent mostly in bed feeling shattered with absolutely no brain at all, not even enough to be bored! That is now improving. Apart from that, I've been fine, but it's really variable from person to person. Good luck!
Hi Sunnydaze. You’ll be fine. It is daunting and I was nervous because you don’t know how you’re going to be afterwards. I had cycle 2 of EC on Christmas Eve. Got through Christmas Day okay but was wiped out Boxing Day. My chemo unit is great and very supportive too. Listen to your body is the main thing. When it tells you to rest, rest up! I’ve got a PICC line in which makes it easier.
I’ll be thinking of you tomorrow xx
Thank you, Shi. I have checked with the helpline. My bloods are fine and the fatigue has improved slightly. I have my next chemo tomorrow (27th) and I'm hoping the effects may be less severe. At least I know what to expect this time xxx
managed to go out for Xmas dinner yesterday, was lovely! But soooo tired, spent the rest of the last 2 days in bed. Apart from that chemo side effects OK so far, but only up to day 7.
Hope everyone else had as good a time as possible
Merry Christmas everyone, I hope you are all feeling well enough to enjoy the festivities.
I will be joining my husband to mas in the Catholic church this morning, he is very religious and he goes every week, but I am not so much. Christmas is the only time they see me there. I said to my husband "everyone will look at me and think she doesn't look very sick at all". They pray for me every week you see, I am on a special prayer list, and I still look healthy with a full head of hair and everything. He said "don't worry, they will think that prayers are being answered". Bless him
Thanks for all your good wishes. I'm pleased to say that the bleeding finally subsided last night, now just a trickle. And the accompanying headache left this evening. I'm finally feeling almost normal! Amazingly after all that blood loss my blood results came back ok today, only white blood count was low at 3.2 (the normal range being 4 - 11). But looking on the forum this doesn't seem particularly low compared to others.
I'm glad to hear your pain has eased now marykamille. But sorry to hear you now have dental issues. Its so scary all the problems chemo can throw at us. I hope it doesn't delay your chemo. I think we feel very similar about lack of support from Oncology. I'm just hoping that should I need further support I'm proved wrong and they're great!
Anyhow I know a few ladies had their chemo over the last couple of days so I hope you are all doing ok.
Wishing everyone a happy and restful Christmas. This time next year this will all be a distant memory!
Take care all xxxx
ps daffydilly - I don't have a picc line but I know some of the other ladies do so hopefully they'll be able to help x
Anyone else having trouble keeping PICC line in place? Hospital gave me a stockinette tube but it’s too big. Tried to buy some more but chemists only have compression ones or crepe bandage. Feel there must be a better way?