June 2017 starters

[Tripletmum]

Cycle 3 done - was really quick this time which was a relief. 1 more left to go!!!!! Lots of love to everyone xxx

[Daffodil54]

It is great that you are making the most of your good week, AliOG. I am so looking forward to that next week. It is important to enjoy the good days!

Have a lovely day ladies.

[AliOG]

Morning everyone,

Thanks for sharing your experience, ilovemarsbars. It's really helpful to know what to look out for. I'm now into my "well week" before hitting chemo round 2 next Monday. Went away for the weekend and did normal things like have a meal out, go for a long walk, drink a glass of wine! Felt amazing and recharged my batteries significantly. Going to keep fingers crossed for round 2 that this is a pattern. Oh, but a filling did fall out during the weekend so I've got to check to see if I'm allowed to get it fixed.

Hope everyone is doing ok this week xx

[Daffodil54]

Hi everyone,

I am having day 6 slump post 2nd chemo. Also sad to see hair disappearing this morning. I will give up on ice cap for third cycle which will at least reduce time in the suite. Have to wait till Friday for wig so will wear scarves till then. 

Hope everyone else is feeling good and doing well.

Hugs to all.

[Jintz]

Hope you feel better soon !

[Jintz]

I'm so glad you feeling better today Triple mum and hope all goes well on Tuesday.
Good luck !

[Ilovemarsbars]

The scary thing was that I felt ok. Just tired. But as the evening came I started to feels shivery so took my temp and it was up. Checked again a few mins later and higher still. I called the heat number and they had me straight in. Bloods showed neutropenic levels at 0.6 . Iv antibiotics straight away. The next day they dropped to 0.5 so they gave me the white cell boost injections and I had to stay another night.
I didn't feel unwell just tired and not myself so make sure you stay aware. Literally no aches or pains, irons was clear. Chest X-ray was clear!

Oncologist said they will give me the injections as matter of course now to hopefully prevent it happening again.

X

[Abulafia]

Sorry to hear about the sepsis, ilmb. That must have been quite scary. Did a temperature alert you?

Well, I got the post steroid crash. Spent Wednesday and Thursday resting up, and today.. day 7 2nd fec, finally coming out of the fog!

I've grown fond of soleros (well the aldi alternative). Nice for sore throat. Have 2 bottles of Nystan to keep things in check.

Also find I could come off Metoclopramide earlier as long as I eat small portions of plain food and just chrw, chew, chew.

One thing about 2nd cycle, is fear not intense as I am learning what to expect.

Also picc line clean was a breeze today. Psychologically used to it. The DN is very gentle and patient.

Also have found putting an ice cube on belly for just a couple of seconds takes the sting out of the injections, and much easier to do standing up than sitting of laying down.

I think I might treat myself to a chippy tonight!

Mary. x

[Daffodil54]

Sorry to all of you going through a hard time right now. 

I am on day 4 post 2nd chemo and have felt a bit rough for the past 2 days. Injections started today so may get extra side effects. Nausea a bit reduced though.

Hair still falling out but not all gone yet. Have to wait a week for wig so have turban on today. 

Hugs to all and stay strong. 

X

[AliOG]

Sorry to hear you've had a rough time, Ilovemarsbars. That sounds like a real ordeal. Can you share with us how you knew you'd got it so we can watch out for the signs? I really hope you feel better now and can get back to the schedule before too long. 

Im on Day 12 post first treatment and I'm just starting to feel human again. I'm having coffee with a friend and a weekend away with my husband in our camper van. Can't wait to get away from these four walls! It's been a real rollercoaster so far but I'm hoping forewarned is forearmed for the next bout. Hope everyone else is ok. Still hanging onto the hair here at the moment but expecting the drop any day! X

[Tripletmum]

Jintz my treatments are every 13 days so next one on Tuesday all being well. I need 4 in total and next week in no. 3 so after that I hope to be in the home straight!!! Can't wait for this all to be over. Feeling much better today xxx

[Ilovemarsbars]

Hey everyone . Sorry I haven't been here. Ended up in hospital over the weekend with nuetropenic sepsis which was a bit crap. Not great considering I only had one chemo to. Saw my oncologist Monday who cancelled this weeks chemo and says I can have it next week when I've finished my course of antibiotics. Feeling kinda seen off not having it because I kinda started planning my life a bit round my shedule.
On another note my hair literally washed away in the shower this morning. I let my son shave it before chemo which didn't bother me but watching it literally wash away was quite upsetting. Half my hair left which I'm sure will be gone tomorrow. My pillow is covered in hair to.
Tomorrow I pick up my wig so at least I'll have that if I want to wear it but to be honest I'm so hot at the moment that the thought of wearing it makes me feel a bit funny

Hope everyone's doing ok.

[Jintz]

Are your sessions weekly Triple mum? Don't know how you cope with that hun especially with little ones ! I hope you starting to feel a little better.
Take care
Jintz

[Jintz]

It's certainly cooler Anniej! Ha ha. I had my 2nd session yesterday and have felt really good apart from being a bit tired and irritable. My husband and kids definitely need noddy badges. Kids are all grown up which helps in a way but my two girls live in the UAE so loads of messages but son lives with me so deals with it like dad. I'm very lucky tho.
Anyway hope to have a nice walk tomorrow bufore the injections start tomorrow night and the aches kick it.
Take care and hope everyone else is doing well !
Jintz

[Anniej]

Jintz, I heard you've had to go for the big shave! Brave girl. 😍. Dry scalp? Hospital has given me Aveeno to use from top to toe. I've also bought some coconut oil ready for my radiotherapy. X

[Jintz]

Hi Anniej,
I agree with you in one sense but then I also appreciate how much I do get with NHS and also have a family that are ready to help me out so I guess I am on a winning streak. Just not prepared to pay so much.
I hope you are doing well !
Best Wishes
Jintz

[Tripletmum]

Day 3 of the 'chemotherapy crash' still feel like I have no energy or interest in anything. Hopefully this will pass soon as I am v v v fed up with it and with next cycle due Tuesday I don't want to delay the process at all!

[Anniej]

Jintz, my question is - why haven't you got a prescription for a wig? I don't think you shoul be paying at all. Is it different rules in different areas? I'm a pensioner and definitely couldn't afford the wig I chose!!! My oncologist gave me a prescription the first meeting I had with him. I then went to supplies and was given a wig 'chitty' and a leaflet of the supplier I had to use, who was marvellous. I chose my wig before all the chemo started, so that was one thing less to think about. I really really feel for you if that's not so in your case. Bad enough with new bras, different foods, but wigs are in another financial league altogether! 

Ah, just seen Daffodils post. My wig lady did say I was lucky not to have a cost cap, as most Trusts make a good contribution. That's still better than paying it all. It's disgraceful that you have to.

[Daffodil54]

Hi ladies, 

I am on day 2 of second EC. Bad night with nausea but meds helping today.

I used the cold cap again but really found the first 10 minutes harder this time. 

Still losing a bit of hair daily but have wig appointment next Friday. NHS wig, no charge. Apparently not all Trusts can afford to provide wigs.

I wish you all a good day and restful night.

Hugs.

[Jintz]

Hi Anniej,
I could get Vat off one place I went to and also £100.00 off at another place but they were still 200.00 + which not only do I not have with not working but also think it is a lot of money to pay out. I'll see what the ones I have ordered are like and then decide as I can send these back if I'm not happy. Still think it is a lot !
Thanks
Jintz

[Skells]

Hi velvet,

I definitely had the steroids slump last time as I had 2 near fainting fits day 6 and 7. I'm not sure about increased appetite as I usually eat quite well.

Xxx

[Velvet]

Hi everyone

Thank you so much for all your support both emotional and practical. I feel I've really turned a corner today which is day 9 of cycle 1 for me.

Jintz - I did stock up with ginger biscuits and ginger ale and although I found the biscuits helpful, the smell of the ginger ale was so awful so I could only drink it if I held my nose (I abandoned this!)  Have kept up with the biscuits.

I hope your 2nd session goes well for you today.

Anniej - I read your post and have bravely made a wig appointment.  My lovely hairdresser is coming wih me and has said she will be very honest with me, so will see how it goes.

AliOG - In answer to your question about age / children, I'm 54 and have children in their early twenties.

Can I ask has everyone been affected by the steroids?  I think because I reacted so badly to the chemo I haven't noticed either a steroid slump or increased appetite?  I ended up with additional days steroids because I 'parted company' with the first day's dose pretty quickly after taking them but I haven't noticed any obvious effect on me?

Having a lazy day today just sitting watching Wimbledon in the sunshine and wishing you all well.

Take care all

Velvet x

[Sunshine62]

Thanks for pointing out the eating linked to steroids,I am a bit overweight but usually quite disciplined. The past few days I have demanded cheesecake and had to leave work to have a burger in the middle of the day. I didn't think about steroids doing that until you said it. I hope the hunger subsides now I have stopped taking them.

[Anniej]

Jintz, sorry to ask, but why haven't you had a prescription for your wig? You are entitled to one on the NHS. You certainly shouldn't have to buy one,even if your Trust  only contributes it's usually a good amount.

[Anniej]

Hi Velvet, just dipping in from May group. What a rotten old time you're having! Sending gentle hugs. I'm sure that your oncology team will be prepared for you next session. Just thought I'd give a bit of support re wigs. It does seem to be an issue for some ladies, but I would advise getting your prescription and going along to the recommended supplier to see what's on offer. I'm in the North East and not only was my wig free, there was no cost cap on it, so I had what I wanted! Obviously it isn't human hair, but even the synthetic ones come in at £2-300, so at that price they look good. I have had loads of compliments which does restore confidence . I mean from strangers, not friends and rellys who know about the big C. If you can't find a wig that suits, or decide it's not for you,  then fair enough. For me it made a huge difference when attending smart functions. Hope this helps a bit, and hope all goes well next chemo. X

[Sunshine62]

Good for you,I am just waiting for mine to leave me any day now. I'm trying to just go with it,but like you it will be a relief I think. Just think of all those gorgeous bald women there have been. Hope I don't have a lumpy head.

[Tripletmum]

Thanks ladies. xxx

[Jintz]

Hi Triplemum,
It is probably the steroids too hun. Be kind to yourself. It gets better.
Hang in there x

[AliOG]

Sorry to hear that, Tripletmum. I know what you mean about depressing yourself. I sometimes feel like my world has become very much smaller since diagnosis and it's difficult to see the light at the end of the tunnel. However, day 6 is still early on in the cycle and you'll start picking up soon. Just keep telling yourself this will pass. You might be having that steroid slump that I had. I didn't pick up properly until half way through day 7. Get someone to make you something nice to eat or drink, have a bath or a sleep, do whatever makes you feel safe and cosy and hopefully things will feel better soon x

[Tripletmum]

Having a really low day today - day 6 post chemotherapy no.2 and I was hoping to feel much better. I need to kick out of it as I am depressing myself!!!! On countdown already to no3 but next week seems like forever away. Think today I have the chemotherapy blues!! Xxx

[AliOG]

Morning everyone,

Feels like we are collectively making progress this week.

Abulafia, try and rest up today if you've overdone it. I watched a bit of Wimbledon yesterday and found it a great way to pass some time on the sofa. Your son certainly sounds like a scientist already! Fantastic that he's going to Cambridge. My step daughter is about to start a job in Cambridge so we'll no doubt be down there to visit at some point. It's a city I've never been to.

I definitely feel better emotionally and the nurse confirmed that it will be a post steroid crash that did for me. They are going to keep an eye on it for next time but there's not much they can do. I just need to watch out for it and let it pass, I guess. Still dealing with a very distant and emotionally unavailable husband which isn't helping. I suggested a trip out at the weekend and he was about as enthusiastic as if I'd suggested a trip to the dentist. 

Does anyone else else in this group have young children? My daughter is 12 and I'm 46. Just wondering what kind of age range/set of experiences we have between us. 

[Abulafia]

Velvet, so sorry to hear about your struggles.  Glad you are being well looked after.

Ali0G, my son is studying chemistry, physics, geology and maths.  A budding scientist. 

I did too much today, and am absolutely exhausted.  Brain active, body done in.  I'll learn.

All best wishes fo starting 2nd fec tomorrow,  Daffodil. 

[Jintz]

Hi Velvet,
Poor you. You really have had it tough ! Have you tried anything with ginger on it ? I found go her beer and a ginger and apple juice helped me. Also ginger biscuits. Hope that helps.
My hair started fallin out on about day 15 and I was very upet so just shaved it off. Beforehand I had visited a wig place that had been recommended and they were super. Very patient and honest. I found they were very expensive so ended up buying cheaper one from wigs4u.
It hadn't arrived yet but will let you know.
2nd session on Wednesday so here's hoping it will be an easy one.
Good luck x

[Velvet]

Hi Daffodil54

I must be 2 weeks behind you so I'm glad to hear you've felt well this week.

I'll be interested to follow how you get on with hair loss as we both progress - from what I've read it seems to be very mixed and my oncologist said recent research says 50/50 with FEC? I had my long haircut short but not sure this makes any difference anyway?

Wishing you all the very best for tomorrow

Velvet x

[Velvet]

Hi AliOG

Yes I'm really lucky to have my family around me because I don't know how I would have coped otherwise. 

My husband has been amazing and my kids are in their 20s so they have all pulled together. 

I normally love walking but haven't felt up to going out yet so I'm sure your 20min slow walk with the dog will have felt just the same as a half marathon!! Both are major achievements! 

I've bitten the bullet and made an appointment to look at wigs - I'll see what they look like and if I don't like them it will be hats all the way!

It does feel like a big hill to climb but hoping we are on the way up again now - will keep you posted now I'm coherant again.

Thanks, Velvet x

[Daffodil54]

AliOG, so pleased you are feeling better and more upbeat. 

Velvet, I am sure the team will give you better anti nausea drugs next time. They are so pro-active at dealing with the symptoms. 

I have my second chemo tomorrow. Been feeling good this past week. Still waiting for my wig. Should get it next week. So far hair loss not excessive but started. I used the cold cap and will use it again tomorrow.

Have a good day, ladies and stay strong!

[AliOG]

Velvet, poor you! What a nightmare. That sounds really dramatic and not something you want to repeat. I don't have any experiences of it, I'm afraid, but I really do feel for you. I'm sure they'll sort the drugs out for you next time and you won't have to go through the same ordeal. You sound amazingly strong, even though I'm sure you feel wiped out, so give yourself a huge pat on the back. I'm one day ahead of you (26th) and just starting to come out of the fog. I haven't had side effects as bad as yours but I'm hopeful we'll both start feeling more like ourselves this week.  Have you got good support at home to help you through?

As for the wig question, I've done nothing about a wig either and really don't think I will. I've used the cold cap and am hoping it will work but, if it doesn't, I'm prepared to go au naturelle. I'm sure I'd look like a drag act in a wig so I'm not going to bother. I might regret it but, if I do, I'll go and buy a bright purple one or something equally outrageous.

i really hope you feel better soon. Keep us posted on your progress this week. I've just been for a very slow 20 minute walk with the dog which feels like a major achievement. Considering I was running half marathons a short while ago, I'm learning to adjust my goals.

Abulafia, a son at Cambridge! That's definitely worth hanging around for. What's he studying? You must be extremely proud of him and your husband sounds great. So glad you're getting well looked after.

[Velvet]

Hi ladies hope you are all doing OK.

Well I had my first FEC last Tuesday 27th June and what a week it has been!

I had decided not to cold cap, but then had a last minute panic attack about an hour beforehand so changed my mind and decided to give it a go. I didn't find it too bad at all, but it was later that day that everything went downhill.

I felt OK when I got home from the hospital, but during the evening I started to feel so ill and then started to vomit, and continued to do so on a regular basis which resulted in me spending the whole of Wednesday back on the unit having IV fluids and drugs to try to stop it. I was much the same on Thursday but it did start to slow down and I have improved slowly over the weekend although I feel completely wiped out. The support from my local oncology unit has been amazing but I have felt so sick. I'm terrified that it will be the same in the next cycle but they tell me that they have stronger drugs they will give me so I'm hoping it won't be as bad? Just wondering has anyone else experienced anything like this and did they manage to get it under control?

Also, I haven't done anything about a wig yet and was also wondering how soon others sorted this? I'm kidding myself that the cold cap will help keep a reasonable amount of my hair but really I'm just scared to sort the wig out in case I look awful and its really obviously false. I do have some scarves but its the wig I'm finding difficult to deal with.

I have always been such a confident person and now I can't even make the most basic of decisions.

Hope you are all fairing better than me and hoping it will pick up from now on.

Velvet x

[Abulafia]

My husband is an engineer, I think he missed his profession as a doctor. He would have been good.

Despite my dx of inflammatory, micropapilliary and dcis, he has looked at the latest research and with zero node involvement and zero secondaries, my chances of coming out of this with good survival odds are up in the high 90s. I have to keep reminding myself of that, and that I have a rare response to two rare cancers. It gives me hope for the longer term and that I will see my son graduate from Cambridge. So proud of him. Want to cuddle grandkids when I get them. I am just not ready to go yet.

[Abulafia]

So glad you feel more lifted today. ❤❤❤

[Abulafia]

Not really Ali0G. They keep the sickness at bay. I also take Sertraline for hot sweats, so maybe they ameliorate the effects, not sure.

[AliOG]

Abulafia, do you find Metaclop really wipe you out? I turned into a bit of a zombie after one of them so haven't taken another.

[AliOG]

Morning everyone, 

Abulafia, glad round 2 has gone smoothly so far. I'm hoping that once I'm through this first cycle, I'll know what I'm dealing with a bit better. 

Yesterday I really hit rock bottom emotionally. I spent most of the morning crying uncontrollably from my bed. Husband and daughter just had to keep going around me. God only knows what they thought but they stuck with it and were very tolerant. I think my husband is beginning to realise he can't fix this and just needs to be generally supportive and encouraging rather than distant and worried! A friend came to visit and I was still crying. Felt truly wretched and then, pow! It just lifted. I have no idea why but it has to be the drugs leaving me. I felt almost normal all evening and I've woken up today feeling as if there might actually be light at the end of the tunnel which is not how I was feeling yesterday at all. Totally weird! I'm going to speak to the hospital today and tell them what's gone on and see if it can be avoided next time. 

Hope everyone else is doing OK. Big hugs to anyone having treatment this week xx

[Abulafia]

My hair is pretty much all gone now.. relief really. I have a couple cheap wigs and one really good one with a monofilament top. It's cool and comfortable. I use a little tape by the ears and it stays on even in windy weather. Nice to take off at the end of the day.

[Abulafia]

Hi AliOG. Can they give you something to pep you up a bit? might be worth mentioning.

I am on Day 2 of 2nd fec. So far, more manageable than first. Nystan helping thrush and Metoclopramide helping with sickness. 6 injections to go.

Trying to rest and exercise in balance.

Paracetomol and ibuprofen helping sundry pains, and zopiclone helps when taking 8 dex a day!
.I try to take the dex early.. and DN advised taking metaclop at least half hour for eating.

Asked about injections and Nurse at hospital said it goes in 180° pinching fat..

[AliOG]

Well done, Tripletmum, for tackling it so positively. I'm sure that's the way to go. I bet you'll look fab.

quick question: anyone else experienced the post steroid crash? I'm an emotional wreck and not sure whether I need to tell someone about it at the hospital. 

[Tripletmum]

Day 16 after first treatment and my hair is falling out in clumps!!! Feel slightly relieved that this is happening as I have been dreading it for weeks. Dug out my turbans so time to 'rock the look'!?!

[Daffodil54]

AliOG,  sorry you have been feeling so bad. It does get better and I have been almost back to normal this third week. Ready for second cycle. I know the first 9 or so days will be rough, but worth it. 

Some hair starting to fall out tonight, a bit delayed so hoping the cold cap will save some of it.

[Carole M]

Hi everyone 

I have started a Facebook closed group call Breast cancer care July 2017 chemo starters, if anyone wants to join please do.  Cover picture has pink roses.

[Jintz]

Hi AliOG,
so sorry to hear u feeling so bad. I felt like that on day 6 too. Very achy and slept loads. Hubby probably not sure what to do poor guy.
It gets better. A friend bought me ginger beer from Waitrose which helped with nausea if u are getting it but otherwise I just took paracetamol and slept ! Hang in there !! X
Jintz