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Anyone starting Chemo in December 2018?

1,012 REPLIES 1,012
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Re: Anyone starting Chemo in December 2018?

Dikat 

i have 6 cycles of fec, so guessing the dizzy spells are with me for some time yet.....also.... isn't it the fec that makes you hairless? Coming up to my third....but lady garden and legs still intact.....how does that work???

everything crossed for the 26 th, the gremlin is wounded!! Little bugger....it's odd...I had my tumour removed before chemo, however on the last two cycles I have felt a definite ache where it used to be....makes you wonder doesn't it? 

 

I think your all amazing, I dip into your thread for tips and advice....solidarity sisters xxxxx

Member

Re: Anyone starting Chemo in December 2018?

Marlyn

Thanks for that, worth a try!  The dizzy heads are awful with Fec. Have you just got one more FEC and then moving onto something else, sorry can’t remember...chemo brain 😜 You are doing really well! On a positive note I noticed some hair growth on 3rd Fec. I have hairs on my legs now and lady garden, quite fine so reluctant to shave. Mostly wearing leggings/jeans so getting away with it at the minute. It’s fab that you have such an active supportive group. I’m trying to keep up and offer words of wisdom when I can with being a couple of months ahead! I’ve got an MRI on the 26th to see if the blighter has shrunk. It feels different in shape, flatter now but not sure if that means smaller! Then it will be discussions about surgery, decisions decisions. Whenever I ask about how many lymph nodes are involved just keep being told multiple so guessing that’s code for lots. Love and hugs 🤗 xx

Member

Re: Anyone starting Chemo in December 2018?

Dikat 

just jumping in here, I too struggle with sleep, my onco recommend herbal nytol, it doesn't work every night but on the occasional night I do sleep really well, not sure if it's the nytol or not but willing to carry on with it..just in case..

 currently struggling with the dizzy heads..I'm on fec....hope it stops when it's all over....xxx

Member

Re: Anyone starting Chemo in December 2018?

Hi Sunnydaze

The lack of sickness and dizziness is one of the best things about T. At least it’s only 3 days of the steroids so hope to get back to normal soon. Yes I am reluctant to take anything to help me sleep but might consider it if it does become a problem. At least I can nap in the day if needed. Hope everything is ok with you 🤗xx

Member

Re: Anyone starting Chemo in December 2018?

Hi all. I went to Look Good Feel Better workshop, I can recommend it. I put on make-up every day anyway, so I have my own routine, but I didn't know how to do my thinning eyebrows and I learnt that. Also an excellent goodies bag to take home! It was a bit confrontational though, to be in the company of other women suffering from cancer. I had a few 'is it really me sitting here' moments. On a positive note, breast cancer does not seem to be the worst kind of cancer, you can live and function without breasts and the survival rates are relatively high. 

 

Good luck with the sleeping DiKat. Steroids keep me awake as well, will be on it next week again for my sixth and final chemo cycle. I found I slept through the whole night after a one hour reiki session on day three, which really amazed me.

Member

Re: Anyone starting Chemo in December 2018?

Hi Dikat

poor you. I hope you manage a power nap today. I was given lorazepam last round of T because they gave it to me with FEC for sickness. I told them I was worried about sickness with T so they gave it to me again. Anyway, I wasn’t sick at all with T, but taking  it , is good because it knocks me out and I get a good sleep when on steroids. I know you struggle taking different meds, but just wondering if there is anything you can take to help with sleep?

Good luck with the side effects this time round Dikat, Go Cat and Marykamille . We’re all doing  great👍 . One last push xxx

Member

Re: Anyone starting Chemo in December 2018?

Good luck to gocat and maryKamille today. Hope all is well with your bloods and your treatment goes ahead and goes well. Will be another ticked off 🤗 

Member

Re: Anyone starting Chemo in December 2018?

Blooming steroids. Awake since 2.15, didn’t go to bed until 11.15! Even yoga Nidra not helped to get back to sleep so gave in and got up at 3.15. Going to be a long day.

Member

Re: Anyone starting Chemo in December 2018?

Hi maryKamille

I asked the nurse about it this morning and she said to keep an eye on it as my liver could be playing up even though my results are ok. Still at hosp having chemo. I’m like a pin cushion, veins not playing ball so had to have 5 goes at cannulating today. Nurse said it can be around a year for them to recover, says it’s the FEC that causes the most damage. Hope all is ok with you x

Member

Re: Anyone starting Chemo in December 2018?

Hi Dikat

 

You won't relax until you check it even if that is after the special birthday tea and the glass of wine. Hope you are feeling OK at the moment. You don't need the anxiety to add to it all. Keep safe. XX

Member

Re: Anyone starting Chemo in December 2018?

Thanks Shi

Will ask tomorrow when I go for chemo if they think I look yellow and will ask to check that my bloods were ok. That’s scary nearly getting someone else’s batch! 2 of the nurses always check mine in front of me 😘

Shi Community Champion
Community Champion

Re: Anyone starting Chemo in December 2018?

Hi dikat, for your peace of mind please speak to your team. I’m sure all is ok but just double check. I was waiting for my chemo once and they’d got someone else’s batch lined up for me😳so don’t be afraid to query things 😘😘💕💕✨✨Shi xx

Member

Re: Anyone starting Chemo in December 2018?

Hi maryKamille

I hope all goes well for you on Thursday and things are easier for you this cycle. I’m stressing now because my skin looks yellow. My hubby told me I looked yellow and my son has just walked in from school and told me the same. My Onc said my liver bloods were satisfactory yesterday. I asked about them because I noticed they were high and out of range on my discharge paperwork when I went to A&E with chest pain. Anxiety kicks in again and gone is the slight positivity I had yesterday 😢 Oh well, going out for hubbys Birthday tea soon so will try and paint a smile on my face! Was going to treat myself to 1 glass of red wine but not sure if I should now. Xx

Member

Re: Anyone starting Chemo in December 2018?

Hi Gocat

 

My turn on Thursday, too.I don't get blood test results until the day either. Go to local medical practice on the day before and they take the blood. It goes to the hospital for analysis and the results are always there by the time I go in for Chemo on the following day. Actually, a recent query with my local medical practice revealed that none of my blood test results had been forwarded to them since last December when I first started Chemo! However, they said they would chase up their copies of the results and I did get a call back from a doctor.

In my area, once you are under the hospital for something, according to the Chemo nurse, the GPs don't want anything more to do with it.

Yet we are meant to contact the GP for help with SEs and to be fair they did sort me out with oral/liquid morphine for pain during my first and second Chemos. 

I don't understand why none of the systems seems to be in contact with the others. It's all on computer now and surely only requires the press of a button or the click of a mouse?

 

Hope all goes well for you, Dikat, tomorrow. Hope the 'quiet' period is only that many of us are finding it harder with cumulative effect. When I say 'only' .... you know what I mean!

Member

Re: Anyone starting Chemo in December 2018?

Hi gocat 

Yes I do like the system at my hospital. I always have to have mine taken at pathology in the morning on the Monday and then see the Oncologist later the same day and he always has the results back so I know exactly what’s happening. I’ve not had to have a picc so far and keeping my fingers crossed that’s the case for the final 2 although it has taken a few goes to cannulate at times. Good luck for Thursday x

Member

Re: Anyone starting Chemo in December 2018?

Good luck with T on Wednesday DiKat.  Will be my turn on Thursday.

Good that you know your blood results before you go. 

I have my bloods taken Tuesday by district nurse who comes round to flush my picc

But dont know the results till I get to Chemo unit on the Thursday.

Member

Re: Anyone starting Chemo in December 2018?

Thanks Sunnydaze

Hope this is a good week for you xx

Member

Re: Anyone starting Chemo in December 2018?

Good luck with chemo5 Dikat. I’ve got another week to go, just dealing with the “bloody nose”  bit. I hope your lump has shrunk. My tumour was also mixed in with breast tissue, it’s difficult to assess the size, but I had an mx anyway.

Almost there Dikat, final chemo  after this one?

sunnydaze xx

Member

Re: Anyone starting Chemo in December 2018?

Bloods ok so cycle no. 5 on Wednesday. Discussed all my side effects and all normal so getting the full whack again of Taxol. The Pertuzimab and Herceptin are lower doses as the first dose is always higher as loading dose. Onc said the lump has changed shape, it’s flattened and mixed in with other breast tissue. I’m having an MRI on 26th so he can get a more accurate picture. He said I see you went to A & E with chest pain last cycle. I said yes, I thought it was muscular but as it had gone on for 3 days thought I better get it checked out in case it was cardio or blood clot. He said if it had been blood clot I would have been dead after 3 days! Moral of the story ladies, get things checked immediately. 

Jayne1966

I asked why some people get 4 THP if having surgery after chemo. Struggled to understand fully what he was saying but the gist was that locally we follow a protocol based on a clinical trial and different trusts may follow different protocols.

Hope everyone is ok, some have been very quiet for a while xx

Member

Re: Anyone starting Chemo in December 2018?

Hi maryKamille

Glad that you have managed a nice break away. I’m going to try and arrange something between my last chemo and surgery.

Know what you mean about the back and hip pain, I’m also feeling it down my right leg. I’ve got bloods tomorrow so all being well will have my 5th cycle Wednesday. Hubbys Birthday is Tuesday so that’s worked out well, will be going out for tea and a glass of vino. Thanks for the info re surgery and good luck for Thursday xx

Member

Re: Anyone starting Chemo in December 2018?

Hi DiKat and all you other lovely ladies Heart

 

It seems that Gocat, Drummerswidow. Wahini and others are having a really hard time. Hugs and good wishes to you all. I hope you are all feeling better mentally about the future but it's so hard because it is the unknown for all of us really. I don't think any of us are that confident about our 'teams' at the moment. Perhaps that's part of it, too.

 

Just got back from a short break away which has helped. I would recommend it - a long weekend, anything really - because it can just slightly shift your outlook. Mine needed something. Fatigue is setting in so hard now, along with back and hip pain, and I am dreading my 5th Chemo next Thursday. Before that I used to be almost glad to be knocking off another one on the calendar but Chemo is definitely accumulative with side effects.

 

For those who haven't had surgery yet - I had mine first before anything else - maybe this might help.

 

A friend's daughter-in-law had her diagnosis the same week as me and she had Chemo first. She's now had surgery and then it's radiotherapy. Many of you seem to be following the same treatment pattern. She suffered worse SEs and for longer each cycle than I have. Her targeted Chemo did not reduce her tumour and this is not uncommon. It did 'split' it up into 3 parts and they offered her less drastic surgery as it would have been possible to remove only part of her breast. Suzie chose to have the complete mastectomy to be on the safe side (there's cancer in her family). She may go for reconstructive surgery in a year's time. She is one of those who doesn't query her treatment and finds that helps (we have discussed things) as it enables her to be positive nearly all the time, but then she hasn't had the complications that so many here on the forum have had.

 

At first, I didn't want to know all the details and range of outcomes (you all seem to have far more information about that than I do) but I think as we get nearer the end of each treatment we are not just dealing with what we are going through but focusing more on what happens at the end of all this. I think inevitably that is making us all  take a dive mentally and it is perfectly understandable.

 

Maybe we should try to trust more? After all, our teams are working for our benefit at heart, aren't they? Just a thought.

 

 

 

Member

Re: Anyone starting Chemo in December 2018?

Wahini I can understand you having a mental dip re the future, especially as you have been here before. I agree that you need all of the information before you can make a decision about the radiotherapy in light of this article so hope they will be forthcoming. 

My Oncologist is pretty straight talking. I think he would be honest and frank. Normally I want to know every detail and fact but have kind of put myself at the mercy of the experts in terms of the chemo. With surgery to come next, I will want to know as much as poss from the breast care team as feel this is where I will have choices and need to make informed decisions.

Member

Re: Anyone starting Chemo in December 2018?

I am sorry to hear your cancer came back as TNBC after all this time gocat. This article doesn't say if a tumour can mutate from one class to the next but I understand your concern. 

 

You bring up a good point. Should I pass on radiotherapy now so that  in case it comes back later, I still have a weapon in my arsenal so to speak. 

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Re: Anyone starting Chemo in December 2018?

I am sorry to hear your cancer came back as TNBC after all this time gocat. You bring up a good point. Should I pass on radiotherapy now so that  in case it comes back later, I still have a weapon in my arsenal so to speak.

Member

Re: Anyone starting Chemo in December 2018?

Hi DiKat, I am ok physically, thanks for asking. Mentally I am in a dip because as the end of chemotgerapy is nearing (sixth and final one in 1,5 weeks time) I start getting concerned about the future. My team is not very forthcoming with explanations, they seem afraid I am going to sue or something or submit a formal complaint, while I would just like to know some answers. How can I decide if I want radiotherapy or not if I don't get the whole picture? I would accept a 'we don't know' answer but maybe that  is too much asked from medical doctors? How is your team about discussing your case? or do you not want to know too much? Next week I will go to the look good feel better workshop, I look forward to that.

Member

Re: Anyone starting Chemo in December 2018?

Interesting article Wahini.   I first had breast cancer 2009 oestrogen one and was on tamoxifen for 10 years. But in the 9th year which was last August, was diagnosed with TNBC in same place as previous breast cancer. Its classed as a new primary but now I wonder if its a relapse.  I cant have radiotherapy again as had it previous time, so I worry this could increase my chance of another relapse. Hoping the FEC T blasts it all away tho Smiley Surprised  

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Re: Anyone starting Chemo in December 2018?

Will be interesting to learn what your team have to say on this one Wahini. How are you after your latest treatment? X

Member

Re: Anyone starting Chemo in December 2018?

This article shook me up, although it is progress in breat cancer research. I am now convinced the molecular wiring of my tumour is such that I will relapse because it already came back once, I think (I am not sure exactly what happened and if it is the same cancer, I will have to discuss this with my team). https://www.bbc.co.uk/news/health-47553534

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Re: Anyone starting Chemo in December 2018?

DiKat, yes it was added due to my presumed, now confirmed Brca status. 

 

Funnily enough once they knew about the clot they were unconcerned about my heart 😂 x

Member

Re: Anyone starting Chemo in December 2018?

Fluffysunshinepants

All sounds scary stuff with your heart. It’s so difficult with all these poisons to know what is causing what!

Hope the T is better for you. So far, I prefer it to FEC. Is Carboplatin another chemo or a targeted therapy? X

Member

Re: Anyone starting Chemo in December 2018?

Good morning Fluffy Sunshine Pants and Daffydilly, just sending you lots of “get well soon” wishes this morning. I’m  sure you’re getting good care.

Sunnydaze xxx

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Re: Anyone starting Chemo in December 2018?

DIKat, i start my first T and carboplatin on the 25th. Hopefully i will be less breathless and a bit more with it!

 

They were suprised that my tachycardia was so extreme, literally racing  but i couldn't feel anything. When lying flat if i lifted my arm it would shoot up to 145 beats a minute x

Member

Re: Anyone starting Chemo in December 2018?

Morning fluffyshinepants & Daffydilly, hope you are soon well. Take care of yourselves x

Member

Re: Anyone starting Chemo in December 2018?

Hi DiKat

last T was a week ago today. Aches and pains not too bad but taste buds awful. Eating anything is becoming difficult. Just wish temp would go back to normal so I could stop worrying about that. Think emotionally everything has caught up with me at the moment - tears are too frequent an occurrence this week!

Hope your next session treats you kindly.xx

Member

Re: Anyone starting Chemo in December 2018?

Oh no Daffydilly, sorry to hear this. It’s so stressful isn’t it! It makes you obsessive with temperature taking. I still haven’t got over the obsession from being neutropenic first cycle. Fingers crossed it is viral and you have enough of an immune system to deal with it! How many days post T are you? Xx

Member

Re: Anyone starting Chemo in December 2018?

Trip to A &E last night as couldn’t stop shivering & temp went up to 38.1. Blood tests came back just over Neutropaenic threshold so after intravenous antibiotics and saline drip sent me home. Told me to phone Ben this morning - not sure why? Temp still up ( 37.5/8) and feel rubbish. Guess I just have to sit it out as they think it’s viral, but bit scary. T definitely doesn’t like me!!

Member

Re: Anyone starting Chemo in December 2018?

Will it affect when you can have your next chemo? Is your next one still FEC? X

Member

Re: Anyone starting Chemo in December 2018?

Fluffysunshinepants

Really sorry to hear that you’re going through it with a chest infection and PE. Glad you are getting the treatment and hope you start to feel better soon. 

Take care xx

Member

Re: Anyone starting Chemo in December 2018?

Hi, did my first injection prior to leaving the hospital  so far so good. Next one is at 8am this morning. I just try not to rub the area despite the intense stinging.

 

Got to get used to it as it will be a twice daily thing for the next six months. What with the injections after chemo my poor stomach will look like a dart board! 

Member

Re: Anyone starting Chemo in December 2018?

Morning Fluffysunshinepants 

 

That’s horrible for you.  I hope the infection goes quickly and they resolve your PE. How you getting with the clexane? The chemo keeps on throwing curve balls to us all. Sending hugs x

Member

Re: Anyone starting Chemo in December 2018?

Sorry, pulmonary embolism x

Member

Re: Anyone starting Chemo in December 2018?

Admitted via A&E on Monday evening and released last night with a course of antibiotics and twice daily clexane.

 

Still very breathless and having coughed so much think i have pulled a muscle in my back and shoulder  although some pain is associated with the PE. 

Member

Re: Anyone starting Chemo in December 2018?

What is PE? Sounds bad. Get well soon Fluffysunshinepants.

Member

Re: Anyone starting Chemo in December 2018?

Fluffysunshinepants 

 

sorry to hear you have a PE and chest infection. Are you in hospital or at home? I hope you get better soon xxx

Member

Re: Anyone starting Chemo in December 2018?

I have just been diagnosed with a PE and chest infection, cancer the gift that keeps on giving x

Member

Re: Anyone starting Chemo in December 2018?

Hi DiKat 

Haven’t had chest pains but had a cough. She is just being cautious. I’m already on anticoagulants so the likelihood of a PE is minimal. One thing I can remember being an ex nurse is the signs and symptoms of a PE but I’m glad she’s being cautious. 

Member

Re: Anyone starting Chemo in December 2018?

Hi Drummerswidow

Im surprised you’re having to wait a week for a CT to see if you have pulmonary embolism. Have you had chest pains? If so, hopefully it will turn out to be musculoskeletal like I had with the T. Guess Pax can do a similar thing but does need checking. Fingers crossed for you x

Member

Re: Anyone starting Chemo in December 2018?

Hi Daffydilly

Know exactly what you mean about taste on T. I’m eating and fancying things but everything tastes so weird. Not metallic like on FEC. Sweet, salty and slimy for me! I got some elderflower cordial the other day and mix it with plain fizzy water and that seems to cut through it a little. Hope things get easier for you. My second T is a week today x

Member

Re: Anyone starting Chemo in December 2018?

Yes, know what you mean about come down! 

Yes hair is coming back, and on legs and down below! Still have eyebrows and yes lashes are thin but still there.

Hope it’s easier for you this time round xx

Member

Re: Anyone starting Chemo in December 2018?

Hi Daffydilly. 

 

I had 2nd Placlitaxel on Monday. Was buzzy on Tuesday but cos of steroids can’t sleep. Having problems with sore mouth and nose!  Almost waiting for the other side effects to kick in. This is definitely worse than the EC I had. Got a CT next Wednesday they are querying I have had a pulmonary embolism. Oh the joys of chemo. 

 

Me and and the dogs have had a wee. I’m having a cup of tea and hopefully going back to sleep lol . 

I hope today is better for you xxxx