Help with some tips about chemo

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Hello everyone… I am quite new to the forum and have recently been diagnosed with IBC w/ node involvement (by ultra sound and core biopsy) I am having chemo first followed by surgery. FEC chemo which seems to be standard maybe??? They said I would start next week however not anyone told me what to do in preparation for the chemo other than drink lots of water. I thought they would give me steroids and anti-nausea meds prior to??? I am scared of all of it as it is early after my dx. Just not doing well emotionally…

Thank you in advance for any advice or info. Best wishes to all of you.

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Hi Lee,

Like you just recently diagnosed in July. I had lump removed(grade 3) and also a few nodes removed and it hadnt spread. Thye told me I needed chemo and I went to pieces as I was/am still scared of losing my hair and how I will look etc etc. I posted for some advice on theis site and the ladies were wonderful I must say.
I am on EC chemo but alot of the girls on this site are on FEC but some are also on trials so were all different. Anyhow my first chemo was Wednesday just gone(16th Aug) and the gave me anti sickness pills through the drip and then the chemo and then anti sickness pills to bring home. You also get phone numbers if you have any questions about side effects/symptoms but I have felt fine after my first one apart from sickness on the night of my chemo but I can put that down to a migraine which was becasue I was nervous that day.
You are bound to worry but you will get alot of support here and most of the ladies are either going through the smae or have been so this site keeps you going when you hear their stories/experiences.

Good Luck with your treatment.

Lynne.x

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Hi Lee
Welcome to the Forum, sorry you are here but none of us are here by choice. I have just completed second chemo last Friday.
I get a cocktail of drugs to take starting the day before - start at 10am and then 10pm. Then these continue for up to 3-5 days following treatment. The tablets in my case are anti sickness and steroids. I think most folks get this - I’m sure you’ll get more replies so you can compare. The steroids leave you a bit on edge - I was told that I would have difficulty sleeping - I have heard of people who get up and clean. I take a more sedate approach (too much eneregy needed for cleaning) I lie and close my eyes and although not sleeping I feel my body is getting a bit of rest.
I have tried to drink loads of water and do feel it helps. I have found that water doesn’t quite taste the same. When I tell people this they think I am a little mad - how can water not taste like water? I have tried adding cordials etc. but i do feel drinking helps. Plus psychologically I think you know you are flushing your body of the chemicals.

Good luck with the chemo - I know what you mean about emotionally - it is such a rollercoaster . We have so little time to prepare for these major changes to our life and body and it is very hard. Be good to yourself and try to take one day at a time.

Take Care.

MuddyXX

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Thank you Lynne and Muddy…

Muddy will they tell me to come get those meds the day before it starts or will they give them to me day of? I don’t even have the date as yet. My oncologist said we will get u in next week and they will call and tell you when to come in… that was Thursday so I expected them to call Friday but did not.

I had my GP give me some meds to help me relax and sleep… can u take things like that when on chemo? I don’t want to be awake at night…that is when I worry so much… I can cope during the day.

Thanks again for the info

x

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Hi Lee

Welcome to the site - so sorry you have had to join us but like Lynne has said, you will find so much support on here.

I was diagnosed with bc on 4th April, and a sentinol node biopsy showed it had also spread to my lymph nodes. Because of the size of my tumour (5.2 cm x 2.5) it was decided that I would have chemo first, followed by a mastectomy, radiotherapy, then Herceptin for a year (phew!). The first two weeks were the worst I have to say, from diagnosis, scans etc, to starting chemo. It’s so scary. My first chemo was on 27th April, and like Lynne my first four were EC. Don’t worry, they explain everything to you and ensure you have all the anti sickness tablets, and information you need. I had my seventh chemo on Friday and my last one will be on 31st August. My last four chemo’s have been different drugs so I have suffered different side effects (arthritic, which is beginning to kick in now actually!) but again, the hospital do everything they can to ensure any side effects you do get (and everyone is different!) are minimal.

Overall, the chemo works. My tumour has all but disappeared which is fantastic. Yes, the other hurdle we have to face is losing our hair, and everyone will tell you that was hard BUT, I can promise you, you do get used to it. I decided against wigs and ordered a load of bandanas from a brilliant website (thebandanashop). I still wear make up, and everyone tells me how well I look all the time ! (maybe they’re just being polite, I don’t know!). I remember at the beginning telling my husband that once I started losing my hair, I didnt want to go out, see anyone, speak to anyone etc, but nowadays I honestly don’t give a damn - people have commented on how much more confident I am now.

Lee, I know how scared you feel at the moment but I promise you, things will get better. Once you start your chemo, you know you are getting somewhere. I would never have believed that I could feel as positive as I do now. I can honestly say, my good days far outnumber my bad, even though I’ve still got a long way to go.

We are all here for you, and I wish you all the best with your treatment, please let us know how you get on.

Lots of love

Julie xx

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Hi Lee

My first chemo was 8th August, and they gave me an antisickness tablet first to take, then had a steroid antisickness drug intraveneously and then after treatment was given one tablet to take at bedtime, then 4 steroid antisickness drugs to take 1st day after treatment and 2 steroid antisickness drugs to take 2nd day after treatment. I was also given 2 other antisickness tablets, one to put between lip and gum when feeling sick (only used 2 so far) and the other was to take 2 when feeling sick, OR take 2 three times a day for 3 days as a prevention - this is what I did, and I have not had any sickness or feeling sick.

I am on FEC x 3 and then taxotere x 3, so probably same or similar to you. I am trying to drink more water during the day, as never really drunk lots of fluid in the day anyway. They said didn’t have to change diet, just try to eat lots fruit and veg, and said if wanted take multi vitamins, but not have to. So I haven’t really changed my diet at all.

I have had no probs sleeping (apart from my children), and had a flu like feeling last Sunday through to Tuesday, but was told that might happen.

You will be fine. Yeah you will be scared too, as I was, but it is OK and it is doable and although we would rather be anywhere else, it was fine and am not dreading the next session as much (yeah right!!)

Take care and look after yourself.

Love
Dawn
x

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Thanks girls…that makes me feel better. Sometimes I read things here and it makes me so positive then I read things that scare me…maybe cos it is early on. I imagine I will feel so much better in a couple weeks. I will fell better too if I find out the scan of the rest of my body is ok and has not spread. They can feel one node under my arm which scares me.

I read that someone said they couldnt use the cold cap because they had place on their liver…well what would the cold cap do to u if u didnt know if u had cancer anywhere else? now I am afraid to use it next week. any info on the cold cap?

thanks again… I know I am just just asking loads but I get so talkative when nervous!

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Hi Lee,

I posted a mesage in reply to Julie’s thread about diet and tips through chemo. Perhaps you could check it out, hope you find it helpful. What you’ve prob noticed on here already is that we are all on similar, yet different chemo regimes. Also, every chemo day centre/unit is different, so please don’t feel you’re missing out on anything if you hear some of us having or doing things that you don’t (if you get what I mean??). For instance, I started my chemo in May, I am on E-CMF and am now 2/3 of the way through. I am never given any anti-sickness meds to take prior to my session, but I do get them IV before and after the chemo is administered and also get given a wealth of anti-sickness meds to take home. The unit I go to is a nurse led unit, and I am in and out in well under an hour (veins permitting!). I know many other site users though who generally spend the best part of a day at their chemo centres, even without the cold cap.

I never went for the cold cap personally, not a big fan of the cold!!! I’m a whimp I reckon! Mind you, it meant I was able to spend as little time as poss at the chemo centre. Its a lovely place, don’t get me wrong, but not somewhere I would like to spend the best part of a day!

Anyway, take care of yourself and do check out those tips if you get a chance. Keep in touch,

Kelly
-x-

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Hi Lee

Me again - I was asked if I’d like to try the cold cap, apparently it can prolong the hair loss. As I was told I would lose mine anyway, I decided not to go with it. Chemo was enough for me, without sitting there with a cold contraption on my head! Having said that, some ladies have used it, and I think it has worked for them - no doubt you’ll get more replies on this as I can’t really help having not used it. Sorry! I must admit I’ve never heard of the connection with the liver.

Anyway, don’t worry about asking anything - as I said we’re all here to help.

Love Julie xx

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Hi Lee

Sorry Lee think it was my post you might have seen. I was told cold cap not an option as had spread to my liver, and if I had cold cap the chemo would not work in the brain area due to the cold cap stopping it working up there and if have any rogue cells flying around in my system and escaping to my brain would not get treated. This is only if you have secondaries, and thankfully a quite a few of the ladies on this page do not. Also was told by the chemo nurse, that if have blonde fine hair (which I have) then doesn’t work that well either - but obviously don’t know how true this is.

Try not to worry, and speak to either your macmillan nurse, or the chemo nurses first and see what they advise. Lots of people on here have used the cold cap and they will give you info too. I would have thought that if they thought your bc might have spread then they would have given you lots of scans.

Apologies for worrying you.

Take care
Love
Dawn
x

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they do want to give me a ct scan but i have not received it as yet that is why i wondered if i should go the cold cap next week. looks like chemo will be before scans are done??? dunno

no no no u didn’t worry me… i want all the info i can get about all of this… thanks for giving me the info to know what to ask beforehand!

thanks for replying xx

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After reading this I meant I was diagnosed with invasvie ductal cancer with some inflammation …didn’t get the initials right! sorry…

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Hi Lee

I was diagnosed in March after finding a small lump. I had a wide local excision and four nodes removed, thankfully no sign of spread and a good clear margin. To be on the safe side, they wanted me to have chemotherapy. I started six treatments of FEC which I finish this Tuesday (providing my blood count has risen since last Thursday). I have had the cold cap since the start and yes it is very cold but I have kept most of my hair. I found if I place a bit of wadding between my forehead and the hat, it doesn’t hurt quite so much. I also found, if the nurse does a good job of wetting it and then combs the conditioner through the hair, it really makes a difference to how much hair does not come out afterwards. If they are a bit slap hazard, I found I lost a lot of hair. It has thinned a lot but actually looks better for it (nice to have something positive out of all this)! I also find listening to classical music on my MP3 player helps. I also ask the nurse not to chat and if she has to say anything to my carer to whisper because I’m the sort of person who finds peace and quiet relaxing. If she needs my attention to pat my leg - by the sixth session, you’ll have your treatment running like clockwork too!

I also wanted to mention, if you experience any pain when they give you the drugs, ask your oncologist if the pharmacy would prepare them in drip form rather than syringe. I had dreadful pain with cyclophosphamide and experienced vomiting and was forced to stay in bed, sometimes up to a week afterwards. They now give all but the epirubacin via a drip (they can’t give this as a drip) and I haven’t vomited once and have got up the next day. I have my sessions on a Tuesday and find up to the weekend I have lots of energy (probably due to the steroids), then I crash for two and a half days (just sit outside or on the sofa), then fine again. I also take Diazepam on the morning of the session - just helps to relax me - last time, I dozed through most of it!

Like most of us, I have found the whole experience mentally challenging. The worst time is usually at night, so I decided I needed to set up a support network for myself, particuarly for when my husband is away at sea. I felt I needed to talk to others going through the same thing. Ask your breast care nurse if there is a support group at your hospital or if she knows of an alternative one. If there is not, ring all the GP surgeries listed in the yellow pages in your area and ask if they run one. If you are under 45yrs, there may be a a younger ‘members’ group. I found by talking to others in the same ‘boat’ that the night gremlins have almost disappeared, they have helped dilute the fears and anxieties.

I hope the hints help and good luck with your sessions. If you have any problems, post them on here and those of us who have been through it, I’m sure will be able to help, even if it is just emotional support. I start radiotherapy at the end of September, then herceptin and tamoxifen. Have you got to have any of those?

Poppy xx

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Oh yes, another tip that may help. If they have problems inserting the cannula, ask them to put your hand in a bucket of warm water first - really makes a difference, even if the vessels look nice and plump!

Poppy

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Thank you Poppy for the comments and tips. I am having my chemo before surgery…the dr did mention herceptin…don’t know about the other. I guess it depends on what surgery finds??? dunno

I have decided against the cold cap… got my hair cut short. I have had one Treatment on Thursday and feel ok but not gr8. Having trouble sleeping and think I probably need to take something more often but just hate to.

I am not sure about support group, I will check on that.

Thanks again.

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Hi Lee- I had 6 x FEC and the chemo nurse who took me around the chemo suite before I started treatment, told me the cold cap only worked in 10% of cases. Well, I thought I had nothing to lose - except my hair - which was more daunting than any of the treatment. I had the latest contraption, like a motor cycle helmet that is connected to a freezer unit beside the chemo chair (gosh, sounds like the electric chair - sorry!) and although it is very cold, you soon get used to it. I had to have it for a half hour before treatment, during treatment and an hour afterwards. It was no big deal - the nurses wrapped me in a duvet, put a heated sleeve on the arm where the IV went, and quite honestly, I went to sleep and my husband had to wake me at the end of treatment. They would bring me as many hot drinks as I wanted, and there was a free picnic type lunch meal on a tray, which my husband usually ate as I couldn’t face food. My hair did thin on top (blonde and thin usually) and I could see my scalp, but no-one else seemed to notice, or were too tactful to say anything. I never had to wear my wig, except on a “bad” hair day.

The steroids made me go absolutely crazy - I could only sleep 3 hours a night, although I never resorted to cleaning the apartment! I sleep in my own bedroom, so used that time to frantically search the internet about bc, as I was so very naive and didn’t find this site until much later.

Liquids - I found anything with ginger in really helped quell the nausea. I drank gallons of ginger beer, ginger ale, and on the odd occasion I could face alcohol, about an inch of Stone’s Green Ginger Wine topped up with ice and ginger ale.

Hope alll goes well for you.

Liz.