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Anyone starting Chemo in December 2018?

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Re: Anyone starting Chemo in December 2018?

I just wasn’t good on Fec at all. Don’t want to put you off and might not happen to you but I seemed to get worse energy wise each cycle. Seemed to build up in me and I was spending a lot of time in bed. It was usually 12 days in before I started to regain some energy x

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Re: Anyone starting Chemo in December 2018?

Not sure if I would get on with that Trixielady. Just looked it up and it’s an opioid and don’t seem to get on with them in general. Hope things are better for you next time x

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Re: Anyone starting Chemo in December 2018?

Diktat  how did you find your energy levels whilst you were on Fec, I'm 4 days into 2nd cycle and have no energy at all , I'm breathlessness, weak but temperature is ok levels around 36.2 xx

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Re: Anyone starting Chemo in December 2018?

Diktat, my oncologist prescribed oxoycodone for me thank god, I'm not good with codeine and morphine xx

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Re: Anyone starting Chemo in December 2018?

Yes, I had back pain and leg pain just on right side. Started to fear the worst but Oncologist said some people can have continued pain, not just around the time of having injections. They were going to prescribe me codeine but don’t tolerate it so was just alternating between paracetamol and ibuprofen during week when at its worst. Always checked my temperature prior to this though. X

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Re: Anyone starting Chemo in December 2018?

Dikat, ive been having 7 starting on my 3rd day hate them xx

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Re: Anyone starting Chemo in December 2018?

Hi Dikat, ive had terrible back grabbing pains, also in my legs and hips walking ok one minute then limping the next, luckily my WBC has been good for my 2nd FEC, as oncologist had said i couldn't have chemo without them xx

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Re: Anyone starting Chemo in December 2018?

Yes Trixielady

Last cycle it seemed to cause me more problems with continued bone pain throughout. Having to have 7 this time so that should be fun along with the bone pain that is associated with tax as well. How’s it been affecting you? X

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Re: Anyone starting Chemo in December 2018?

Hi Dikat  have you been on Filgrastim throughout your chemo? Just trying to find out because I'd been given it with my first fec and have been having problems every since ?? Xx

Member

Re: Anyone starting Chemo in December 2018?

Ah thanks Marlyn

yep total solidarity lovely lady 😘

Shi Community Champion
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Re: Anyone starting Chemo in December 2018?

She’s rocking that wig dikat 😁😁 it’ll make great dressing up play toy for her in a few years time ❤️❤️ In a steroid haze I got coloured and tinsel ones off Amazon when on chemo 😁😁well why not 🤪🤪🤪and on that note chemo tune for today with special shout out to sunny daze is girls just wanna have fun by cyndi Lauper, time for 💃🏻💃🏻🕺🕺🕺💃🏻💃🏻Time in the kitchens ladies 😁😁😁💕💕💕✨✨✨Shi xx

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Re: Anyone starting Chemo in December 2018?

Dikat, you rock girlie....love it! I too am bald today.....solidarity sister!! Xxxx

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Re: Anyone starting Chemo in December 2018?

Marykamille

I assume you meant you were on 1st session of docetaxel/taxotere. I had my first one yesterday and hate having to take the steroids as I cannot stop eating.   I also have to learn on to inject more and am dreading this.  I was offered the district nurse service but they could not guarantee this so asked if i could come and learn how to inject mystelf. 

Oncologist told me my main side effects should be pins and needles but anticipate some others. 

 

I got to admit I am focusing on getting through this as I have only 3 more sessions left and then I dont know how long I will have to wait for surgery.  I think NICE say I must be offered surgery within 31 days of being referred to surgeon. 

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Re: Anyone starting Chemo in December 2018?

MY 15 month old Granddaughter Pearl having fun with Granny’s wig. Gotta see the funny side sometimes 😂

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Re: Anyone starting Chemo in December 2018?

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Re: Anyone starting Chemo in December 2018?

Hi DiKat

Thanks for tips about temperature taking and paracetamol. I am on 16mg of Steroids from 1st cycle and the side effect seems to be insomnia - first few days I get about 3-5 hours if I'm lucky. But I get pain 12 hours after Chemo all around my 'middle' which the nurse noted for the first time today - my 4th Chemo. She asked me to rate the pain and I said 'severe' because it is like when I had gallstones and that was hell.

But my GP gave me a bottle of oral morphine and I have learnt to take that at night for the first 3 days and get some sleep. I also have other strong painkillers for in the day but I take as few as possible and only for the first 3 or 4 days.  I get palpitations too and unpleasant fluttery sensations but that reduces - so guess that's the steroids, too.

Glad you are eating - the steroids are meant to make you hungry! Some people lose weight on Chemo and others put it on (Steroids effects again). I lost weight but am now stable.

 

Angelblue - hope things are improving for you and no more family crises. You are a really strong character!

 

Drummerswidow and others - where are we all now in terms of how far through our treatments we have gone and what's left to come?

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Re: Anyone starting Chemo in December 2018?

no aches and pains today and full brain! Have been very productive :-)

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Re: Anyone starting Chemo in December 2018?

Shi

Ive been ok since first passing urine this morning. My bladder always seems a little irritated at first, even on Fec...almost slightly incontinent for first day. I will definitely keep an eye on it and if starts to sting again give them a call. Thank you xx

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Re: Anyone starting Chemo in December 2018?

Dikat, please ring your unit, that’s how my uti was pee burning no temp, I ended up in casa nhs for 6 days on antibiotics via a drip, please ring your unit and keep safe 😘😘💕💕✨✨Shi xx

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Re: Anyone starting Chemo in December 2018?

Hi Pastamissus and Drummerswidow

Hope your pains ease off soon. I know I’ve probably got this to come in a couple of days but am enjoying not having the hit by a bus/spaced out feeling for now x

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Re: Anyone starting Chemo in December 2018?

Hi Sunnydaze

Thanks for the good wishes. Yes it is a stressful time moving to a different treatment but let them know how you feel and you will get lots of reassurance. I’m feeling the most energetic I have felt whole treatment today. Which is weird day after treatment. I felt really woozy with Fec and hardly moved out of bed for a few days. I know from the other ladies that it doesn’t last though as the Se’s kick in from about day 3/4. Also I’m feeling the effects of the high dose steroids! Gonna do something relaxing now as don’t want to over do it. Keep us posted with how you get on x

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Re: Anyone starting Chemo in December 2018?

Hi Pastamissus. Whinge away. I’m 3 days post Paclitaxel and got pains too.  Start the Filagastrim injections tomorrow as well. What are we putting ourselves through? 

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Re: Anyone starting Chemo in December 2018?

Hi Dikat

Just a quick note to wish you well this cycle. I hope the steroid come down isn’t too bad. I read your posts and the other lovely December ladies to keep me up to speed with what is happening in chemoland. Its been great because you have all helped me loads, with tons of info and yips. Thank you. 

I am about one week behind you all. I have my first ‘T’ next week and I am feeling a Little nervous about it after 3FEC. I guess, it’s just a case of ticking them off and wading through the horrible side effects. Thanks for the 80’s jukebox hits Shi, they make me smile. 💃🏻 💃🏻 🕺 😍👍💃🏻💃🏻💕

Keep your strength up ladies and your imaginary dance shoes 👠 on!

Sunnydaze xx

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Re: Anyone starting Chemo in December 2018?

Just need a whinge. Day 8 post first taxotere. Been fortunate to not have the 'run over by a bus' feeling, but I still have achiness and pain moving from joint to joint. The worst is my ankles and heels. Taking ibuprofen and cocodamol. Just hoping it will stop at some point.

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Re: Anyone starting Chemo in December 2018?

Thanks Shi

Awake at 3am, glad it’s last day of steroids today. Feeling ok apart from burning when I pass urine. Temperature fine and I have some urine test sticks and nothing untoward showing at the moment. I drank over 2 litres of water last couple of days. I will keep an eye on it and ring the unit today if it doesn’t improve just in case my test sticks are not accurate although they are the same ones they use at docs. Thanks for support as always Shi...only 2 more to go, 😁 xxx

Shi Community Champion
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Re: Anyone starting Chemo in December 2018?

Dikat 😘😘what a day you’ve had darling, rest up now and get some sleep (or as much as the steroids will allow) we all usually caught up on sleep during the day. You’ve done it now that’s another one ✅ off 😁😁get onto amazon or whatever and treat yourself to something 👍👍don’t forget any feeling funny but no temp ring your unit 😘😘💕💕✨✨Shi xx

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Re: Anyone starting Chemo in December 2018?

Well been at the hospital for 8 hours. It took about an hour to cannulate as had to have 3 goes, got there eventually though. The three drugs are administered separately. Had pertuzimab first then an hour wait then Herceptin and a two hour wait and finally Docetaxel. I had to be re cannulate after Herceptin as was starting to feel uncomfortable. Nurses were fab as always as I said how anxious I felt about having a reaction and they were very reassuring. I’ve got 7 Filgrastim this time to take from day 3. Feeling absolutely shattered, not helped from being awake from 4 this morning, blooming steroids. Hope everyone else has had a decent day x

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Re: Anyone starting Chemo in December 2018?

Jayne1966

enjoy your day, glad you’re feeling better. 

Took 3 goes to cannulate. Just having first pertuzimab. Takes an hour, then have to wait an hour before Tax and Herceptin is administered. Asked about steroids. I don’t step down, just finish after the 3 days at high dose😧

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Re: Anyone starting Chemo in December 2018?

DiKat good luck today. I found the administration of THP much less traumatic than FEC. I went back to 3 steiroids a day for 2 days after the 8 a day finished. If you read this be sure to ask them, I think you will anyway. 

I put on 10 lbs with FEC but have lost it already on THP. This is good for me but I hope you don't have the same if you are underweight. I need to loose a couple of stone anyway so I personally won't be upset. 

 

Drummerswidow,  I was terrified yesterday. No conclusion on cause doesn't help. On the plus side it completely wore me out and I had my first full nights sleep last night for weeks. Feel good this morning so going to try and make the most of the day. 

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Re: Anyone starting Chemo in December 2018?

Hi DiKat

 

Hope all goes well today and you don’t feel too rough. 

 

Jayne 1966 having a heart problem myself I know how frightening it can be when it’s beating so fast and you have chest pain. I think some of it is to do with the chemo and I know mine also has to do with my anxiety. Xxx

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Re: Anyone starting Chemo in December 2018?

Oh dear Jayne you’re not having much luck. I had a similar situation with cycle 2 but that was FEC and no conclusion was reached. My ECG and bloods were fine too and neutrophils and wbc were high at that point! 

Well I’ve been awake since before 4 this morning, guessing it’s the high dose steroids. Only had 6mg per day with FEC but 16mg this time over 2 doses. I didn’t feel great after the first 8mg but even worse after the second 8mg. Lousy headache, nausea, feeling dizzy and heart beating 90-100 bpm just sitting still. It’s only 3 days though so will have to cope! I’m a bit worried about coming straight off a 16mg dose to nothing. Isn’t that going to be a bit of a come down? Did others do the same? Although I felt dizzy I still managed to go out fog tea with my friend. I polished off a plate of belly pork, mash and carrots. I’m still a stone lighter than before diagnosis so not always eating the healthiest at the moment. Chemo nurses have said to eat what I fancy at the moment as need the calories to try and build up and put some weight on before surgery. I’ve always been fairly slim but always had a bum. It’s practically non existent at the moment. I hate being too thin, doesn’t look good on a 49 yr old. I think the weight thing is the biggest issue for me at the moment, probably more so than the hair. Well, better have some breakfast and more steroids!! Then get myself ready for my first THP. I’m there at 10 this morning 😧 

angelblue hope you don’t feel too bad today and hope everyone else has a good day, looks like it’s a sunny 😎 one again xx

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Re: Anyone starting Chemo in December 2018?

What a day. In A and E at 6:30 this morning as directed by the help line with chest pains and tightness. Hour and a half in waiting room. Bloods done in triage plus ECG.  Eventually into minors where it was quieter. X-ray and lots of obs done. No conclusion reached at all. More bloods and saw the onc. They said if it comes back go back in which is great as it's not gone away yet. They seem to think heart function is fine and it could be a side effect.  Interestingly my white blood cell count is really high so the injections are working. Heart is still really fluttery though but hopefully now injections done for this cycle it will settle down. I seem to have one family medical crisis per chemo cycle so all should be fine for a couple of weeks now!  Finally discharged at 3pm. Intending to sleep most of tomorrow! !

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Re: Anyone starting Chemo in December 2018?

No chemo bell in our unit, unless I need to get a guide dog cos I’m blind 😊

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Re: Anyone starting Chemo in December 2018?

Angelblue, please keep eye on temp or is you don’t feel right ring your unit please keep safe 😘😘dikat walks sound lovely, glad you’ve been enjoying the sunshine 🌞 and hope you had nice time with friends 😁keep focused and look at your units bell, tell it as you pass it, I’m ringing the heck out of you soon 😁😁 bit of I’m still standing by Elton John on the Chemo jukebox for all you amazing 💃🏻💃🏻🕺🕺💃🏻💃🏻Beautiful people 😘😘💕💕✨✨Shi xx

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Re: Anyone starting Chemo in December 2018?

Had 4th FEC today...just 2 more to go Woman Happy!! 

 

Have headache, feel nauseous and eyes are so sensitive to light (thanks for tip marykamille). but not too bad ...although I feel like a sore throat is coming on ...but hoping thats just my chemo enhanced paranoia Woman LOL!!

 

Good luck for tomorrow dikat.... and to everyone else due this week. Anf a hope everyone is feeling ok and having some respite from the joys of chemo this evening xxxx

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Re: Anyone starting Chemo in December 2018?

Well I’ve taken my 16mg of steroids today in 2 doses after food as directed in preparation for tomorrow’s THP. I have had banging head all day and feel a little dizzy. I’m such a lightweight, can’t even cope with bloody steroids. No red face at the moment which I’m surprised at as got it after first 2mg dose with first Fec. On a positive note had a lovely walk in the sunshine around the country park directly behind my house, very lucky to have it, call it my extended back garden 😂. Only a mile, but been doing it every day on my good days. Going to meet a friend for tea soon, trying to keep busy and not think about tomorrow, 😧 x

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Re: Anyone starting Chemo in December 2018?

Thanks for the info Holeinone, much appreciated x

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Re: Anyone starting Chemo in December 2018?

Hi ladies

 

I'm from November chemo starters and can see some of you are experiencing the bloody nose issue. I mentioned this to my onc after my first T, it is a known side effect of T in that it weakens the small capillary blood vessels. My nose was filled with dried blood every morning, I also had a couple of new broken veins appear on my face. Nothing to worry about but worth mentioning to your team and of course don't blow your nose too hard! If you actually have bleeding I believe that's a chemo hotline call.

 

Take care xx  

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Re: Anyone starting Chemo in December 2018?

Jayne1966

That sounds rubbish. Glad you have picked up a bit now, apart from fatigue. Did they give you anything for diarrhoea? Wonder if come down from higher dose of steroids affected your mood too!

drummerswidow

fingers crossed you don’t suffer se’s. Two weeks doesn’t give you much of a break but suppose it gets it over with more quickly.

Take care both xx

 

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Re: Anyone starting Chemo in December 2018?

Hi Jayne 1966

 

Sorry you have been suffering. I had my first T yesterday was very tired but I was at the hospital for 6 hours. Nurses were very cagey about side effects. I’m just taking each day as it comes. Getting very fed up with it all now. Hope you feel a bit better now. I’m having T every two weeks. xx

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Re: Anyone starting Chemo in December 2018?

DiKat,  bad couple of days was lots of dioreah and appalling fatigue. Just not wanting to move.  Bonee ached but that wasn't it. It was more just a feeling of...  Hard to know what word to use . ..  Despair or not wanting to carry on. It has passed now although fatigue is making things tough. 

Glad you are able to move forward with treatment though. Good luck x

 

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Re: Anyone starting Chemo in December 2018?

DiKat,  bad couple of days was lots of dioreah and appalling fatigue. Just no

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Re: Anyone starting Chemo in December 2018?

I still have my eyebrows and lashes, I hope I can hang on to them! I also still had some fluffy hairs on my head after my 3 mm buzz cut that I tried to shave off but the hairs are so soft the razor cannot catch them. I actually think I have a good looking skull, it kind of suits me weirdly enough, but I look forward to my hair coming back. I am very gratefulgrateful I am not getting the numb toes/fingers thing. Fingers crossed I will escape that side effect!

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Re: Anyone starting Chemo in December 2018?

Pleased you are getting away without any serious side effects Wahini. I have seen the bloody nose thing mentioned by a few on other threads. If I remember, I will ask the nurses why that is when I go on Wednesday as it’s clear it is an issue but don’t think I can remember it being talked about at pre chemo briefing. At my pre chemo briefing I was told about both Fec and T. Would have been better if I could have been told about T just before having it. This is why these threads are so useful, gaining so much from other peoples experiences x

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Re: Anyone starting Chemo in December 2018?

Hi Wahini, the runny nose is due to the chemo as is the bloodiness, the latter I have had after every chemo dose during the low immunity week. The runny nose is really irritating isnt it especially since there is no nasal hair and therefore no warning that it is about to run! I am hoping the nasal hair comes back soon as my scalp is now feeling very peachy unlike my eyebrows which have only just disappeared😛

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Re: Anyone starting Chemo in December 2018?

I get hot flushes too, especially after eating or drinking or in bed at night. I also have a runny nose and since I started T it looks bloody. This I find sinister, like my inners are letting go. Apart from tiredness I have no serious side effects. My taste is coming back.

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Re: Anyone starting Chemo in December 2018?

Hi marykamille

It sounds like the chemo, Filgrastim and other drugs we have to endure cause all sorts of aches and pains for many of us and it’s difficult to pinpoint what it is that causes each side effect. You would know if you are having Filgrastim as they are the injections in the tummy usually around 3 days post chemo. Fingers crossed the paracetamol pre walking helps you. Just remember to take your temperature prior to taking paracetamol so you know it’s not masking a temperature. I do it even if not feeling unwell but then I’m a bit paranoid due to history of neutropenia x

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Re: Anyone starting Chemo in December 2018?

Hi DiKat

 

Saw oncologist today and she (saw the registrar this time, not the male Dr) said that I should take a couple of paracetamol before I do walking. That gives the painkiller less to do and works as a preventative. I'll give that a go. She seemed to be saying that the backache was 'expected', so I guess it is quite common. 

I don't think I am having Filgrastim-  just FEC5 without the 'F' now so that is not the cause for me. I had pain in my right leg with Sciatica for 18 months. Nothing wrong with the leg - all to do with the spine. That was cured by a caudal epidural injection in August of 2018 and was very painful (the injection) but total relief thereafter which was bliss. Unfortunately I got my BC diagnosis at the end of the following month.

 

Registrar was helpful about 'eyes', angelblue and gave me a prescription for Hypromellose Eye Drops to use as well as the Blephasol Duo Cleanser.

 

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Re: Anyone starting Chemo in December 2018?

Hi dikat

 

Glad to hear you're going ahead this week as well. Its funny though - we're always relieved when its going ahead and yet dread it as well. I'm feeling all on edge now I know its tomorrow. I can understand it must feel even scarier starting a new regime.  

 

Yes you're so right about over-thinking things! I definately do in everyday life and I'm 10 times worse when it comes to health issues. I think (well I've been told!!) that I can be a control freak and I guess its hard not being in control of this situation...we're in the hands of surgeons, oncologists etc.

 

Its definately 10 filgrastrim for me. I'm going to have to try and do it myself as 10 days of waiting in and listening out for the district nurse is a lot!! xxx

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Re: Anyone starting Chemo in December 2018?

Hi Angelblue 

ive just rung for my bloods. I’m going ahead, my neutrophils have risen to 1.45 from 0.2 in a week, so I calculate that as an increase of 0.18 per day, if it works like that. I understand your panic...I’m not liking the fact that I’m starting lower every time! I’m sure you will be fine though as with a .11 increase that would put you at 1.4. My Oncologist said he has on occasion put people through as long as above 1. Think he said he had to request special permission though.

I had to laugh when you had done the calculations Angelblue. Exactly the kind of thing I do....think we’re both over thinkers! They wouldn’t do anything to put us in danger, hopefully. I wonder if it’s going to be 7 or 10 Filgrastim for us this time?? Good luck for tomorrow xx