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December 2017 Chemo Starters

Cathsin
Member

Re: December 2017 Chemo Starters

Great news Kirsty x
KirstyH
Member

Re: December 2017 Chemo Starters

Yey my neutrophils have turned their corner and were 0.12 yesterday and 0.24 today! Even though that is still low, they just needed to see they were starting to go back up so they are letting me home xx
Cathsin
Member

Re: December 2017 Chemo Starters

I am on doxetaxal but been fortunate tot to have had the pain as one of my side effects .
The chemo issues are bad enough it pain as well must be awful.
Any signs of you going home Kirsty x
KirstyH
Member

Re: December 2017 Chemo Starters

I would definitely speak to someone if the current pain relief is not working, I personally would want to speak to my oncologist rather than gp and see if your oncology team can prescribe something else.

Luckily I haven't suffered from any of the muscle or joint pain side effects from tax, and not on the injections so no bone pain either but I think they will put me on the injections for next cycle so I could have the bone pain on its way next round

Still in hospital 🙈 just went out for a walk tho, im getting cabin fever x
Mamadeacs
Member

Re: December 2017 Chemo Starters

Thanks ladies...this is the thing. I don’t know if pain is chemo pain (due chemo 4 this Thursday so I thought that pain might have settled) or shingles pain whic yes it very painful, my skin is super sensitive. Do I speak to GP as the gabapentin and Zomorph not helping? I feel like such a wuss. Xx
rabbit28
Member

Re: December 2017 Chemo Starters

Hi Cathsin, there are different taxane chemos docetaxel, pacltaxal and abraxane which all have the same side effects. xx

Cathsin
Member

Re: December 2017 Chemo Starters

When you talk about tax ladies do you mean doxetaxal
I believe shingles is painful on its own but coupled wit chemo side effects must be awful x
rabbit28
Member

Re: December 2017 Chemo Starters

Hi Mamadeacs, I too bet these pains from head to foot and really uncomfortable.  Oncologist told me I could take ibroprufen and paracetamol together then use co-codamol at night.  I have the strongest co-codamol which you need to get from your gp. Last cycle I didnt sleep for 5/6 nights but painkillers definitely helping this cycle. Only problem is all these painkillers cause constipation. Pain should ease off after a few days. I think pain from shingles is from nerve endings whereas pain from the taxane is like lactic acid in the muscle along with joint pain.

 

Hope this helps and you get some relief from it soon. xx

KirstyH
Member

Re: December 2017 Chemo Starters

Oh Nikki that sounds awful too, seems our first Tax's has knocked us into infection.

That is not good news about the junior doctor, sometimes you know its something more and have to push at them, when theh should have seen this to begin with.

I havent had the pelvic pains myself but they have said a side effect from T is pains and they also said to me when I aksed them for the filgastim injections (which they wont give me) that it is often the pelvis area that gets the bone pain, so that could be part of it too? Hopefully one of our Dec ladies can help more and has had these before as well. Take care xx
Mamadeacs
Member

Re: December 2017 Chemo Starters

I’m sorry to ask for advice on something random when some of you are really struggling.
I am Day 19 on my first T. 10 days ago I was admitted with really high temp, rash on my tummy and awful pain the cocodamols wouldn’t touch. They put me on IV antibiotics as my infection markers were up and oramorph for pain. What I have since found out from my GP is that I have shingles but junior doctor disregarded when I was in hospital, even though I pointed it out. I am home now taking gabapentin and Zomorph but still in pain.
What I need advice on is: on movement I get what I can only describe is a lactic acid type pain in my lower back, pelvis and thighs. Could this be down to the shingles or could it be side effect from the T?? I still have hypersensitive skin where the rash is and unfortunately for me on my tummy I can feel where every injection has gone into my tummy the last couple of months. I’m still itchy but every blister has popped and scabbed so I’m not contagious.
Love Nikki xxx
KirstyH
Member

Re: December 2017 Chemo Starters

Sounds like you both had nice days camilla and cathsin 🙂 xx
Cathsin
Member

Re: December 2017 Chemo Starters

Rabbit that must have been so scary
Kirsty hope you pick up soon . Had a great day today went to see the terracotta warriors in the museum in Liverpool then out for Sunday lunch . It's the first time I have been out in three weeks other than trip to and from hospital . Was good to feel normal for a short while but totally shattered now x
Camilla9
Member

Re: December 2017 Chemo Starters

Very random, I know. Just cooked a roast chicken dinner which the family seemed to enjoy, but every item on my plate tasted the same, of metal.
I'm day 11 of 3rd FEC, I had hoped by now to be starting to feel normal again.
Someone suggested using plastic cutlery, will give it a go.
I know it's not much to moan about compared with what some of you are going through.
Sure my turn will come.
Babysat my 5 month old grandson today - we live 300 miles apart so he doesn't really know me but he smiled and chuckled for England. Seemed as delighted to see me as I was to see him. Really cheered me up!
SamH87
Member

Re: December 2017 Chemo Starters

Oh no Rabbit!! I’m glad they know what caused it and you have meds now though. Scary to think what chemo can do to us so quickly! Xx
rabbit28
Member

Re: December 2017 Chemo Starters

Hi Kirsty, you must be fed up in there but best to safe and your'e in the right place,are they giving you anything to bring your neutrophils back up?

 

I'm cycle 2, day 4 I've got antibiotics for the uti. The doctor was really thorough and wouldn't let me go until he found the cause of why I collapsed. Really scary that can just happen in the space of an hour or so. xx

KirstyH
Member

Re: December 2017 Chemo Starters

Oh my god Rabbit!! That is so scary! And all coming from a urine infection, crazy how quickly it can come on and make you collapse. Glad They foubd it tho, have they given you antibiotics? What day in your cycle are you on?

Im still bloody here, feeling absolutely fine, temperature has been normal since Friday morning and ni symptoms but my neutrophils still down at 0.1 so wouldn't let me leave today either 😞 another night stuck here and more days off work tomorrow xx
rabbit28
Member

Re: December 2017 Chemo Starters

Hi Kirsty, hope your'e feeling better and they let you go home today.

 

My turn for a trip to hospital last night, felt fine Friday and during the day Saturday then last about 10.00pm developed uncontrollable shaking and shivering, red face and chest but no temperature with some nausea. I called for some advice and spoke to the chemo nurse who went through a few things and told me to try and get warm.  He called me back about 15 minutes later and told me to go to a & e to get my bloods checked. I went by car they told me to sit in the waiting area which I did then I collapsed. My mum was with me and said people came rushing from everywhere and put me on  the floor and told my mum I was about to arrest.

 

Fortunately that didn't happen they brought my knees up and I came round but my blood pressure was really low and they thought I might have had a heart attack.

 

I had numerous tests carried out and found it was a urinary tract infection and dehydration. We got back about 4.00am and today the muscle and joint pains have kicked in so can barely move, taking plenty of painkillers and resting.

 

Hope everyone else is getting on ok. xx

 

 

KirstyH
Member

Re: December 2017 Chemo Starters

Morning, still here ladies,waiting on the blood results to see if allowed out yet today. Lol Ive seen that on facebook as well, curry ones 🙊 im a bit skeptical about one haha but anything is worth a try 😂

I asked about the injections and they said may consider for next round but they wouldnt give them in this current situation to someone that is clinically well as they come with their own complications and also produce immature white cells with wouldn't solve the problem, as need mature neuts so fight infection, they are more for preventing them dropping so low in the first place xx
SamH87
Member

Re: December 2017 Chemo Starters

Love that quote Karebear! So true..
Sorry to hear you are still in hospital Kirsty! I don’t know how true it is but I keep seeing ladies saying that pot noodles are good to boost the neut count?! Absolutely no idea how or why though!!
X
Moijan
Member

Re: December 2017 Chemo Starters

Yes Kirsty, I was admitted with nutrapenia when on Docetaxel in 2001/2, I appreciate how tough this can feel.

its day 15 when taxol hits rock bottom, so I’m praying not to be in your position.

 

lotsof love

 

Mxx

runawaygirl248
Member

Re: December 2017 Chemo Starters

Hope your Neutrophylls start to go back up overnight Kirsty! I guess all you can do is rest up and let the medical team do what they can. Surprised they havent given you the GCSF injections though to help your body along. 

 

Big hug ❤

KirstyH
Member

Re: December 2017 Chemo Starters

Its just the way my body reacts i think as my neutrophils were really low on day 20 of cycle 1 and cycle 2, being down at 0.53 and thats when they are built back up at end of cycle, so think how low thet must have been in the middle of those cycles too, its just we wouldnt have known as no reason to check as haven't had a temp or been unwell at all before. They said some people go down to 0 before they start coming back up, but everyone is different. Decetaxol is harder on the ststem than fec as well so thats probably not helping either xx
Camilla9
Member

Re: December 2017 Chemo Starters

Kirsty, do they say WHY the neutrophils are falling so low? Is it your change of drugs? V disheartening for you.

Big hugs
KirstyH
Member

Re: December 2017 Chemo Starters

Today they were down even further to 0.017!! So still here, they said they need to see them turn and at least get to 0.3 or 0.4 then seen as I am clinicallly well they would let me go. Asked hubby to bring in my manuka honey tonight lol xx
Moijan
Member

Re: December 2017 Chemo Starters

Yes, yes karebear. Today is a gift...that’s why they call it ‘the present’ (sorryxx)

 

hope your nuts keep rising krisrty, I’m finding that a worry...goodness knows during the next 10 daysxx

KirstyH
Member

Re: December 2017 Chemo Starters

Yes dramaminx iv read that on forums aboit the lump becoming scar tissue so still can feel hard

Yeah my neutrophils have been below 1 on every cycle on my pre chemo bloods, the with the extra day they have shot back up to over 1.5 on treatment day, but thats on day 21 of each cycle , im only on day 10 just now so they will stay low for a while im sure, the doc says they will let me home even if still neutropenic (under 1) but they to at least see them going in the direction of up, not still on way down

Oh I like that saying karebear and it is so very true! We need to remember how true it is really when going through this xx
Karebear
Member

Re: December 2017 Chemo Starters

Am thinking about quotes for the tattoo am thinking of getting after the treatment has finished and I came accross this one which I think is very true especially going though this journey

'Yesterday is history, tomorrow is a mystery, today is a gift'

Ending with a pink ribbon or butterfly

What do you think ladies ?????

Karebear
Moijan
Member

Re: December 2017 Chemo Starters

Cathsin, nutraphils are the specific white cells which docs use to monitor how much immunity you have, 

‘they have to be at least 1.0 for chemo to be given....but less than 1 can allow you to catch infections more easily......not sure about mine just now...they were 1.9 before my chemo yesterday, but one expects them to go down after chemo, so I won’t know till 14 days now what they are!

 

sleep wellxx

 

Moijan

Cathsin
Member

Re: December 2017 Chemo Starters

Kirsty not really sure what neuts are to be honest
Aliand
Member

Re: December 2017 Chemo Starters

Thanks girls will try that out x
Dramaminx
Member

Re: December 2017 Chemo Starters

Hi Aliand - sorry you’ve got a painful arm. I too have cording and was told to massage it. Nothing major but I find stroking it from my wrist upwards whenever I remember seems to help!

KirstyH - that’s interesting what you say about response. The oncologist said sometimes it can turn to scar tissue and the ultrasound will be able to give more information. Definitely ask about getting yourself some filgrastim injections, I’m shocked they are not giving them to you. It sounds like you need a helping hand getting your levels back up.

Unicorn - I watched seven episodes then had to have a break 😂
runawaygirl248
Member

Re: December 2017 Chemo Starters

Hope your neutrophylls start to come back up KirstyH or the hospital give you some injections to help the white blood cells increase. Big hug ❤

 

Dramaminx - hope that you get the result you need with the tumour shrinkage...keep us posted.

 

Hope you all have a good weekend - the finishing line is on the horizon ladies!! 💪💪💪

Moijan
Member

Re: December 2017 Chemo Starters

Aland, Yes some warmth, but also drink loads of water to flush it out .....then if it was the drug, it will help it recover quicker.xx

Unicorngirlmummy
Member

Re: December 2017 Chemo Starters

When I had rads they thought I had cording & advised gentle stretching exercises like post op exercises & a hot water bottle. Just to add to the list of problems eh! 😬 Hopefully your unit can help you next week xx
Moijan
Member

Re: December 2017 Chemo Starters

Kirsty, ask them about cross infection...I see lots of coughing and sneezing in the hospitals, when no one covers their mouths...yes you’d be better off in a private room, but if on antibiotics, they will help.

 

Moijanx

Aliand
Member

Re: December 2017 Chemo Starters

neither, its further up the arm than where my cannula was and the opposite arm to the picc
Unicorngirlmummy
Member

Re: December 2017 Chemo Starters

Hi Aliand, do you mean your arm is still sore from the cannula or from the picc? You could try a warm hot water bottle. Maybe call your unit if the picc, does it look red or inflamed at the entry site?

Big hug to you dramaminx & fingers crossed that it’s going the way it should. I love gavin & Stacey 😂 xx
Aliand
Member

Re: December 2017 Chemo Starters

Hi girls, I'm from the January thread, I've had 2 EC so far first one was peripherally 2nd in PICC. I didnt have any problems with the peripheral but my arm has been sore in the last couple of weeks and when I had bloods done the phlebomomist thinks I've got cording. It mainly feels stiff but if I dry it with a towel after a bath for example its quite painful, is there anything I can do to help it recover ? Frustrating as I asked for a PICC from the first oncology meeting but she said I didnt need it. Yes my veins are fine but this is what I wanted to avoid, Ah well nothing major I suppose.

KirstyH
Member

Re: December 2017 Chemo Starters

Hi dramaminx, they havent suggested anything to get them up or saif anything more than we will check again tomorrow... im going to ask about the injections. I feel totally fine, they were all set to let me go as I seem well, until they saw blood results. Im also thinking they should have me in a private room actually now with them so low but theyve not said anything

Oh no that is so rubbish if there hasnt been much response yet, but i have read on a lot of forums and things that sometimes thungs still feel the same then at surgery it turns out to be dead cells, so there is hope. But they may end up operating sooner than planned if they are concernrd about no response? Is there any other chemo drug options they can try afterwards maybe as extra backup? Xx
Dramaminx
Member

Re: December 2017 Chemo Starters

KirstyH- what can they do to get your neuts up. 0.11 is barely registering! Do you feel ok (in the grand scheme of things?)

Big hugs to everyone suffering with their skin. I used to get acne and I know how miserable it can be. I used to hide my face with my hair, so I was a bit worried when I knew I was going to lose my hair and security blanket. If anything my skin is really dry, when I get up in the morning I look about 80!

I had cycle 6 yesterday so have had a baldy, glasses, tracksuit day on the sofa watching Gavin and Stacey. Kids are out til bedtime so a proper day of rest (before embarking on half term). I have found paclataxol so much easier than EC. Just feel a bit tired with flushed cheeks today. Once the injections start tomorrow I know I will get bone pain but I’m hoping to take some Clarityn as recommended on this forum.

I have an ultrasound next week to see how things are progressing. My oncologist is concerned that I am not responding to treatment (tumour is still hard) so my case is going before the board on the 19th. They may decide to stop treatment and send me for surgery. I must say I’ll be pretty peed off to have gone through all this and all that’s happened is i’ve poisoned myself and gone bald. But I’m trying to keep positive and trust in my consultant. Has anyone else had not much response?

Enjoy your weekends xx
KirstyH
Member

Re: December 2017 Chemo Starters

Oh a picture of the pups would have been nice 🙂

Oh cathsin thats good you had own room, im in a room of 2 so as close as I can get so far. So rven though I no longer have a temperature and feeling fine, my bloods just came back and neuts now dropped to 0.11!! So almost none lol did yours go that low? They wont let me go home now because of that so need to see id they start to change direction each day. Im worried tho as my neuts have been low on every cycle so they normally take riggt up until new cycle to get back up, im only on day 9... so surely cant keep me in for weeks if all signs if infection away but just neuropenic?x
Cathsin
Member

Re: December 2017 Chemo Starters

Kirsty hope you get home soon . I was lucky enough to have my own room and never moved outside of it to keep away from all the germs . They threatened to move me to one of the main bays I threatened to go home if they did . We can't be too careful can we x
Unicorngirlmummy
Member

Re: December 2017 Chemo Starters

Awww....so cute ☺️ It doesn’t sound very restful but it will make you smile 😊 xx
Camilla9
Member

Re: December 2017 Chemo Starters

Tx for reassurance Kirsty.

If I knew how to do it I wld post a photo of the little group feeding.

Molly, the mother, had a litter last summer and they sold all over the country. My daughter was working so husb and I had such fun puppy sitting. They were adorable.
KirstyH
Member

Re: December 2017 Chemo Starters

Aww how cute, I love miniature daschunds, we have one in our office at work as the company owners have one. Enjoy your nice break!

Good luck when you move into this regime Camilla, looks out for spots haha to be honest other that that I think it was just bad timing with me having a bit of a cough then the sore throat that it turned into slight infection and ended up here with the temp, nothing else major x
Camilla9
Member

Re: December 2017 Chemo Starters

Puppies arrived yesterday at my daughter's cottage. Gorgeous little miniature dachshunds. 4 girls, 2 boys, 4 tan, 2 black and tan.I'll see them at the w/e. 

 

Also there 4 other dogs, 2 teenagers and a 5 month old baby. A rest it will not be but so nice to have a change of scene.

 

Hosp insists I return early for bloods and assessment.  In my interest, so doing what I'm told!

 

Hope the pesky spots clear up and you're soon out of hosp Kirsty. I'm following behind you with same treatment plan - forewarned is forearmed!

Unicorngirlmummy
Member

Re: December 2017 Chemo Starters

Hope you are feeling better Kirsty & that you can go home very soon.

Fingers crossed for your results Sam 🤞.

Hope everyone else is ok & that side effects not too horrible 😕 xx
Moijan
Member

Re: December 2017 Chemo Starters

Hi ladies, sorry you are in hospital Kirsty now...hope and expect you will be out over the weekendxx

 

cathsin...have pmd youxx

KirstyH
Member

Re: December 2017 Chemo Starters

Yes I wonder too Fiona, they all kept asking if I suffered from acne when younger as apparently that can nake it worse, but I didnt. Mine was also mild previously until this time around, they were multiplying by the hour 🙈 untill I had hundreds of white headed spots all over. Thank god they are starting to dry out a tiny bit now 😂

Hope you all have a good weekend xx
KirstyH
Member

Re: December 2017 Chemo Starters

Glad it was ok and fingers crossed for good results when have your app with Dr, let us know how that goes!

In a 2 person room just now, temp is back in normal region so thats good and I still feel fine so hoping when they test bloods today they will let me home oral antibiotics to finish off with. Fingers crossed anyway

Just think tho that after Tuesday you will only have 2 left!! 🙂 xx