June 2017 starters

[Abulafia]

Velvet, definitely increasingly tired. My sil, said for her, T was a breeze in comparison. Fingers crossed.

I get told off by breast surgeon. A lot of my breast pain has been down to not wearing a bra. Sent me off to Sainsbury for the pull up ones. They are wonderful. Have to wear them overnight. Much more comfortable.

[misyangel]

Just jumping in from may thread,
Daffodil I struggled really bad with sickness on my fourth fec, not had that before and was the same as you struggled to find a taste I could tolerate. It did pass after a couple of days. Glad you are feeling better there is nothing worse.

Velvet I have found each chemo different but I think you sort of know what to expect and prepare yourself I think the key is plenty of rest.
Also with fec key is plenty of fluids which I know is hard when water for me tastes disgusting. For me I don't have a pic line and I am starting to get vein pain down both arms which is the red stuff they use that causes the damage. I start the tax next and it isn't as harsh on your veins as fec.

[Daffodil54]

Thanks ladies. I definitely feel that the effects are cumulative and it is harder each cycle but it may be that I didn't drink enough and don't feel like drinking much today either. Nothing tastes great. 

As it will be T next cycle, I just hope the downward spiral stops. I hope to feel better next week in week 2 as my family will be here from Italy and I don't want the grandkids to have a miserable time because I feel low.

I usually feel more normal after day 10 when the injections end. 

Big hugs to all of you. Hope you get your good week, Velvet.

[Velvet]

Hi Daffodil54

Glad you are feeling a lot better today.  I know how you feel because I was really sick with the first cycle.  It's so difficult to drink enough when you feel so nauseus and then you get into a vicious circle because you haven't drunk enough:(  The only thing I could eat were ginger biscuits and the only drink I could stomach at all was orange squash.

I definitely hit the post steroid slump this time (cycle 2 of FEC-T). I didn't move out of bed on Saturday, just slept.  Felt really ill on Monday too.  I've lost a day somewhere because I've been a day behind all week?!

Feeling better today for the first time really and it's day 10 today for me.

Just wondering has everyone else had the same symptoms each cycle or have they been different / worse?  I've been told that the effect is cummulative as you go through chemo.

Looking forward to my good week next week and hoping everyone else is doing well.

Best wishes to all x

[Jintz]

Hi there. They aren't meds. You wear them on your wrists on pressure points. Glad to hear you are feeling a bit better today. Hope it continues.
Take care

[Daffodil54]

Feeling a lot better today. Not tried travel sickness bands. Not sure if I could add anything to the meds I'm taking already. Battling with fluids as they are hard to keep down and battling to find a taste I can tolerate. Maybe today will be better with that too. Thanks for the support. 

Hope everyone else is doing well. 

[Jintz]

Hope you feel better soon Daffodil54. Have you tried travel sickness bands ?
Rest lots and lots of fluids

[Tripletmum]

Hope you are feeling better today Daffodil xxx

[Abulafia]

Hope nausea eases up, Daffodil. xx❤❤

[Daffodil54]

Feeling grim. Worst nausea so far. Started within a couple of hours of third treatment. Staying in bed...:(

[Daffodil54]

Just home after third ec. Half way too! Next on to T.

Good to know how everyone else is doing. 

Hugs.

[Abulafia]

Day 4 of 3rd Fec. Waiting for post steroid crash... feeling tired still. Have to rest a lot.

Being half way is so nice. This is quite the battle both mentally and physically.

So pleased for those about to start T in next couple of weeks. Been checking on the May starters.

Was told they'll get the picc line out as soon as possible after last T in Sept (25th) something else to look forward to. Although it has been my little friend . xx

[Lynhq27]

Hi, I'm having 3rd fec Thurs. Good to be half way but let's see what the 'T' part brings us. Still got some hair so doing the cap so see what that does. We sure live on the edge don't we. Hope all well for you x
Lyn

[Lynhq27]

Thanks. Just need to find that now lol xx

[Daffodil54]

Well done, Triplemum! Wish you all the best as you go through your final side effects and then move on. 

Xx

[Jintz]

Well done ! You must be so happy ! Hope Tey fix tell bell quickly !!
Take care and big hugs x

[Tripletmum]

Yipeeeeeeeee, I'm done. Just left last chemotherapy session!!!! There is a bell to ring when you finish and I rang the bell sooooo hard it broke!?!!!?! Time for side effects and then perhaps time to grow some hair!

Love to all having treatment this week xxx

[Daffodil54]

Third ec tomorrow. Looking forward to being halfway but not looking forward to side effects.

[Carole M]

For Facebook group try this link

https://m.facebook.com/groups/470367409994998

[Carole M]

Hi ladies, I see a couple of you are having problems finding our face group Breast Cancer Care July 2017 Chemo Starters. It should come up if you search Facebook and there is a profile picture of pink roses. I can add you if you ask to join.
Jintz and Lyn I have sent you a private message on here.

If anyone else has problems finding the group please PM me on here and I'll try to help.

[AliOG]

Hi ladies,

im not sure! Let me talk to the person that administrates it and I'll get back to you x

[Lynhq27]

Same for me

[Jintz]

Hi AliOG,
It says no results found. What am I doing wrong ??
Jintz

[AliOG]

Hi everyone,

If you want to join us on FB, search for Breast Cancer Care July 2017 Chemo Starters. I started at the end of June but most in the group started in July. 

X

[Jintz]

Sorry ladies, this was meant for Velvet. Hope you are all feeling better today I'm on day 16 of cycle 2 and am exhausted today. No energy at all !

[Daffodil54]

Hi everyone

I am also having third round of ec, on Tuesday though. Am enjoying my good week and have blood test and oncologist visit tomorrow morning. Expecting to start Docetaxol at next cycle. 

Not sure how side effects will change. 

Well, I hope everyone is coping and thanks for the support.

Big hugs.

[Abulafia]

Hi everyone.

Don't have much to say, just nice to read everyone's comments. Getting ready for 3rd round of FEC on Saturday.

Almost half way.

xx

[misyangel]

Hi all, I am from the may thread and wondered if I could join the facebook group as my chemo doesn't finish till October and I am on the may thread but worry that everyone will be finishing before me.

[Jintz]

Hi AliOG,
What is the Facebook link please ?
Thanks

Jintz

[Jintz]

Hi Triple mum, hope it helps. Do you not have a picc line in ? I have found that the picc line has been great so apart from when I was in hospital and they had to put another canular in as they thought the picc line was infected, I haven't needed anything else.
Hooe you feel better soon.

[AliOG]

Hi Mishy,

The July thread is really quiet as many of us have migrated over to the Facebook group. You're more than welcome to join us. Let me know if you want the link. We are pretty active on there. I didn't know back ache was a side effect but I had it really badly after the steroids wore off in round one. I'd had back ache before I started so just thought it was a recurrence of that but it made me feel lousy. Could hardly move! Stopping the steroids today in round 2 so hoping it won't come back. It's an endless round of managing SEs, isn't it? Anyway, glad you're feeling a bit brighter and that the docs are considering adjusting the meds for next time. I think we often feel we need to do as we're told rather than questioning the system. I was going to try a walk today but it's still throwing it down. The dog doesn't look too excited by the prospect! X

[Mishy18]

Hey Ali July thread is really quiet! Glad you're coping better with round 2! I'm 10 days into round 1 of fec, was horrible but have managed a walk out today to a relatives seem not to bad, have got a bit of back ache but I hear that is another SE! Mouth starting now so will have to get something for it, my onc meeting went well he said he is going to reduce the red drug in the Fec change sickness meds and again if I have a bad reaction to just go back to hospital, hopefully this next one will be better he said I think we have over cooked you! So fingers crossed cos it's really scary when you have to go into hospital as a result of the chemo any way I'm going to try to make the most of this next few days and next week ready for the next one! Take care ladies x

[AliOG]

Hi everyone,

How are we all doing today? The first bout of nausea has subsided for me now and I have to say (touch wood) that round two has been a whole lot easier than round one. I walked to the shop and back yesterday on Day 3 which is about 25 minutes there and back which would have been unthinkable last time. The steroids are waking me up early, about 5 am, but I can cope with that much more than feeling drugged up to the eyeballs. The only difference I can determine is that a) I'm less anxious and b) I'm not dosed up on antibiotics this time. Maybe my body was just overwhelmed with chemicals.

So my new thing to try this week is Epsom Salts. The ladies on the May thread are discussing this too. My dietician recommended them to me. You put them in your bath and soak for 40 minutes (I need no excuse to do this!) and it relieves aches and pains, can help constipation and generally rebalances your minerals. Will give it a try today and report back.

As for sore mouth, I'm bust mouth washing with corsodyl (about three times a day) and having a couple of small sips of manuka honey. The combo seems to be working although my mouth did get worse in week 2 last time and I'm only in week 1 at the moment.

As for the hair, still shedding a bit but not time for the shave yet. I think other ladies I've spoken to have gone for a grade 2 to begin with, if that helps. I think shaving to all off to zero can hurt your scalp a bit. Lots of good products on Live Better With Cancer to help with that. 

Anyway, hope today is ok for everyone. It's chucking it down with rain where I am so good excuse to give in and no try to do anything today. 

X

[Velvet]

Hi Jintz

Thanks for the tip, I wouldn't have thought of pineapple.

I've been so lucky that the Aprepitant they gave me yesterday has worked really well so no sickness this cycle (yet?)  Feeling exhausted as expected, but I can deal with that compared with last time!

Mind you they had 3 failed attempts at getting blood from me on Monday, and my first needle yesterday tissued so my arm is black and blue now!

I was expecting to use the cold cap again yesterday but I've lost so much hair over the weekend that they advised me not to bother because it would burn my scalp, so in the end I didn't bother.  I'm now having my head shaved in the morning - did others go for a grade 0 or has anyone had a grade 1 or 2 - not sure what to do?

AliOG hope you are feeling less nauseous today and that the tablets have kicked in for you.

Tripletmum sorry you are feeling rough - hope today is a better one for you.

Wishing everyone good luck for this week x

[Jintz]

Hi Velvet,
I have heard that sucking pineapple cubes also helps. I went off all fruity stuff so cannot say fir sure. I lived on ginger drinks and biscuits until I got heartburn ha ha. Good luck !

[Tripletmum]

Soooooo tired today - day 7 slump for me. No energy, no taste buds and such a lovely day outside! Also have had the added gift of piles this cycle - chemotherapy is just the gift that keeps on giving!!!!
Great to hear all your updates and that things are moving forward. Enjoy the sun if you can
Xxx

[Daffodil54]

Sorry, I meant, Triplemum!

[Daffodil54]

Morning,

I also coldcapped and was very pleased to still have hair at the end of first cycle. Coldcapped at second session, but unfortunately that's when I started shedding rapidly. I have now shaved my wisps and am alternating turbans/scarves with the pretty good wig I got from the hospital. At least my next session will be quicker.

AloNG, I hope the nausea wears off quickly. Have a good rest today.

Velvet, I hope they manage to control the nausea next time. I must say, those first few days are the worst.

Tree house, it is great that you can see the light at the end of the tunnel.

Have a good day, ladies.

I am just waiting for the district nurse to come and flush and redress my picc line. I found the line much easier for my second treatment.

[AliOG]

Morning everyone,

Second EC wasn't too bad yesterday apart from two failed attempts to get the cannula in! After the second go I went white, then grey, and then nearly fainted. It wasn't pleasant but they persevered and we cracked on. When I got home I started feeling nauseous, took a pill but it didn't really go away. Headed for bed early but didn't really sleep too well, probably steroid induced. Will stay in bed this morning and try to rest. I definitely feel calmer even though I feel sicker! 

My big shock was waking up this morning to lots of hair on my pillow! I've cold capped both times so hoping it's thinning rather than shedding. Watch this space!

good luck to everyone having treatment today - one step closer! 

X

[Velvet]

Thanks for the advice Dafodil54.  

The problem I had last time was that I started to be sick as soon as I got home after chemo, so the antisickness tablet I had in the hospital before chemo didn't really get a chance to work, and I continued to be sick then for over 24 hours.  Anything I tried to take to help just came straight back.  I must admit the first thing I did manage to eat (and keep) were ginger biscuits so I've got a supply in ready for this time!

I've asked for my antisickness and steroids to be given IV this time so hopefully they might get more of a hold.

Also, my hair has started to come out over the weekend (day 19).  I did use the cold cap last time and I am going to use it again tomorrow, but I seem to be sheading hair everywhere so I'm guessing that will just continue now.  

I did brave getting a wig last week and the wig ladies were lovely but the whole experience did feel strange. Not sure whether I will wear it, but then again when I have no hair left I might feel differently.

Hope others who've cold capped have faired better.

[Tripletmum]

Glad all has been quiet because all is well with everyone. I am on my day 6 slump post 3rd treatment but I did manage to have a good weekend. Now focused on enjoy the weather and getting ready for my last session next week.

Still have not lost all my hair but totally not presentable in public! So now on turbans. Have been assured that hair starts to regrow 8-10 weeks post treatment (I will be counting!!!). Also looking forward to getting my tastebuds back as I miss them terribly at the moment.

Good luck to everyone this week xxx

[Daffodil54]

Good luck for tomorrow, Velvet. Take the anti sickness meds before you actually feel nauseous if possible. Drink lots of fluids today and for the next few days and have some salty snacks to hand for the few days after chemo. Helps me. 

Ginger beer and biscuits can help.

[Velvet]

Hi ladies,

Abulafia - I was thinking the same thing it has been quiet on here for a while -  I'm hoping that's because everyone is getting on OK.  Glad you managed to get away over the weekend - a change of scenery does the world of good!

AliOG - I just wanted to wish you well for today.  Hope it goes as well as last time for you.

I now have some additional anti sickness tablets to take for tomorrow for my second FEC, so I'm hoping that I won't react as badly this time.  My consultant said he can't promise it will stop the sickness completely but it should hopefully reduce it, so fingers crossed for some improvement at least 😞

Daffodil54 - hope you enjoy your good week - you should have sunny weather ahead to enjoy!

Wishing all you ladies well as we all move forwards.

Velvet x

[Daffodil54]

Hi ladies,

It has been quiet on here. I hope all goes well today, AliOG. I think it helps to have an idea of how the cycle affects us. My second was similar to the first, and as I am now in my third week I feel close to normal. I will make the most of this time to get jobs done around the house as I was not too energetic in the first two weeks. It is good to build up strength before my third ec next Tuesday. 

Hair now shaved so at least I will save time on next treatment. Alternating wig with scarves. Not too bad.

Enjoy this lovely day!!

Hugs.

[AliOG]

Morning ladies,

How is everyone doing? I'm going in for my second round of EC this morning at 10.30 am. I'm definitely not as anxious this time and I feel much more prepared. My husband seems a lot calmer and we are all much more positive. My third week has been pretty much trouble free and I've been able to function normally. I've been tired but rest has helped. The docs are adjusting my steroids this time around so that I don't get the major crash part way through week one. I'm not looking forward to the zombie feeling which is bound to descend but I'm hopeful I'll manage it better. 

It's a beautiful day here. Hope the sun is shining wherever you are.

x

[Abulafia]

Hi ladies.

It's been quiet on here. Missing your comments!

I have been so tired and lacking in energy. We booked a couple of days away this weekend (in Devon). I have spent lots of time in the room resting up while my son and husband went for long walks. Did manage the steam train and paddle boat.

I am guessing that I might get more tired on 3rd fec...

Hope all you ladies are doing well.

Dafodil, that's interesting about sensations in breast.

[Daffodil54]

Day 12 for me and definitely feeling more normal. I haven't had breast pain but did get a sensation in my affected breast during and just after chemo. 

I am looking forward to my good week next week before the next cycle. 

Have a good weekend everyone.

[Abulafia]

Hi everyone.

Day 13 of 2nd fec and energy levels up. Went to RIAT today, and the car park lady let me park in disabled so didn't have to walk too far. Could have hugged her. RIAT was superb.

One thing I have had an issue with the last 2/3 days is breast pain. Even with some swelling that appears to have disappeared today. I am hoping it is good pain. Anyone else have this at all? Paracetamol seems to help.

[Tripletmum]

Hope you can enjoy the rest of this week AIlOG and have a fab weekend before it starts again on Monday. xxx

[AliOG]

Tripletmum, that's great news! The finish line is in sight for you. Hurrah! Hope everyone else is doing OK. I'm heading for round 2 on Monday. Trying to get myself psyched up for it and the rest of the family prepared so they manage a bit better this time x