71156members
373871posts
cancel
Showing results forΒ 
Search instead forΒ 
Did you mean:Β 

July 2016 starters

Pookie1
Member

Re: July 2016 starters

Hi everyone,

sorry to post with a moan, but I've had a really rough day today. Had first FEC on Wed and apart from some nausea I wasn't feeling too bad. Then last night I woke up with the most horrendous abdominal pains that went all the way from rib cage to lower stomach and around my back too. 

Has anyone else experienced this? I'm feeling a tiny bit better now, but it's taken all day to be able to even lift my iPad to write : (((( 

hope everyone is feeling better than me xxx

haz25a
Member

Re: July 2016 starters

Evening ladies,

 

Nellie - Glad the lorazepam is helping. My GP and CPN (Community Psychiatric Nurse) were both rather amused and puzzled that lorazepam is used as an anti sickness med by oncology as it a benzodiazepine used for anxiety traditionally.

 

Fluffymittens - My period was due today and they're usually pretty regular, however got my period exactly a week ago (first chemo on 4th July) and I've still got it and it's quite heavy. My period usually only last 3-4 days.

 

Flopsy and OAD - Yeah, the advice on nails IS really conflicting. I bought some nail strengther and dark polish. Where did you get your evonail from Flopsy?

 

Taran, Sue, Bella, Bookworm and Alex (is that everyone? sorry if I missed anyone out) really hope you all feel better soon.

 

I got my head shaved again today as my hair was shedding badly and getting everywhere. I went to the salon at my chemo unit. It's fairly new, but brilliant. Everyone is completely sterile, disposable gowns, towels, private room, even got a warm towel on my head after my shave and advised to use coconut oil on my scalp. I didn't get my wig styled but the hairdresser showed me some other ones that they do with a fringe already in it, he told me to ask for another prescription and put a wig aside for me, not sure I'll get another prescription though and I'm not going to push it. He also gave me four cotton sleep caps to take home. Then popped into Maggies and got myself booked in for a Look Good Feel Better session and also a Headstrong session to learn what to do with headscarves. Trying to make the most of my good week and extended time before next chemo, I got four extra days as they changed my chemo dates from a Monday to a Friday.

 

Hope you all have a restful weekend with minimal SE's and those who are feeling rubbish improve quickly.

 

Take care.

 

Hazel.xx

 

 

Alex2016
Member

Re: July 2016 starters

Hi everyone, just thought I'd add my bit in too! Feeling rubbish with nausea and retching (only sick once though). Only thing that cheered me up was Sue's cat pic lol. Taran and any others out there with young children, you deserve a medal. Take care everyone, this sure is a rubbish journey. 😒x
Bookworm48
Member

Re: July 2016 starters

Likewise feeling really rotten on this second EC cycle and ridiculously weepy. Absolutely exhausted and terrible nausea but Oncologist has given me a patch called granisetron so we shall see if that helps. I do seem brighter this evening. Muggy weather probably doesn't help does it. Hoping we all feel brighter tomorrow xxx
Bella boo
Member

Re: July 2016 starters

Sue that is certainly me off steroids today. I haven't moved and am so tired. It's funny how each cycle is different. I had bad motion sickness and headache with my first fec but this time just nausea but nothing that's stopped me eating as long as someone else makes it. I did have a good day yesterday and went out for a little while but am now totally floored today and spent this morning crying for no real reason which is not like me at all. Hoping I perk up a bit in the next couple of days as long as the pain from the injections doesn't start too early. Taran my heart goes out to you I don't know how your coping with the children as well as feeling poorly. Nellie I hope your doing ok too. The only certainty is that we will feel better in a few days and that is what I am holding on to. Hugs to everyone xx

Sue H-S
Community Champion

Re: July 2016 starters

Hi Taran

- you are so brave trying to 'muddle' through. Eating lots of little snacks, such as ginger biscuits might likely help. Bananas also great for a snack. As you progress through the week, in theory it should get better, but if it does not, you should really talk to your GP - as they are the quickest to react for adjusting meds. But do give them the background for your nausea, including all of the meds you presently have, so they can give you the right adjustment 

You might want to try Ginger tea as well. If you do not like ginger than perhaps try some chamomile - but not peppermint. 

This will be us - off steroids in the next few days.....

                                                         zonked 1.jpe

Huge hug,

Sue xxx

 

On a diversion
Member

Re: July 2016 starters


@Flopsy wrote:

Thanks Hazel,

 

For sharing the news on nail treatments. I had Gel on my toes just before my first T&H.

 

On my finger nails I am using Evonail and taking off/ moisturising once a week. I did get one ridged/damaged nail on FEC but that was before I started in the Evonail.

 

All good so far...

 

p.s. I just remembered that the chemp nurse at my clinic told me not to put anything on my fingernails unless it was clear. I wish that someone had done a study or there was some evidence behind all this conflicting advise.

 

 


I agree Flopsy, so much conflicting advice about so many things, it is hard to know what to do. I was told by one nurse clear nail strengthener is the best way to protect the nails, then another nurse said dark nail varnish was the way to go (which I attempted but it made my nails look messy so I took it off). X

Flopsy
Member

Re: July 2016 starters

That's really interesting about the red blood cells. When I was floored by FEC I went back to look at side effects and decided that low haemoglobin was the most likely explanation for some symptoms.

 

Sue, do you mind my asking what day of your cycle the test showing low red cells was taken on?

Flopsy
Member

Re: July 2016 starters

Taran,

 

One of the advantages of trying to get effective anti-nausea meds is that you may find something that works now and then have something up your sleeve for the for the next cycle. If you wait for the next cycle you may find (like me) that you presribe something that doesn't work and then trying to get new meds proves very hard.

 

One of the disadvantages (I haved found) is sometimes the new drugs have their own set of side effects to deal with.

 

It could clear up in a few days but it's impossible to tell. Hindsight is a wonderful thing and I just wish I had dealt with my nausea and vomiting problem at the start.

 

I had N&V for all of my FEC cycles and it was never taken as seriously as I would have liked. They did add a new drug  for one cycle but it made no difference. I kept getting told that "x" would work or that my next chemo regime (T&H) would be without the problem (I wasn't).

 

Since then I have added on one good drug and has side effects from another bad one.

 

Sorry about the ramble. Hope this helps in some way but more importantly that you feel better soon.

Taran
Member

Re: July 2016 starters

Thanks Sue, I've been thinking about calling the team about the nausea. But wondering if it is worth is at this stage now or whether to muddle through and hope for some med adjustments next time. Today were my last steroids so am cautious of how much worse tomorrow is likely to be. But we will see.xx
Sue H-S
Community Champion

Re: July 2016 starters

Hi Taran,

sorry to hear you are struggling - if you are feeling more sick this cycle it might be an idea to discuss with your GP and team to get that part of the medication adjusted.

The tiredness/fatigue is unfortunately a cumulative effect and may likely get worse with each cylcle.

And yes, it does seem to set in earlier, too, Fortunately it does seem to get better towards day 10.

I just had by 4th FEC yesterday - and I must say that fatigue was noticeable to a degree even after post day 10 after 3rd FEC, but not as bad as in the first 10 days. Hence I asked to have by blood reports printed out to try and get a better understanding with regards of the red blood cells, which carry the oxigen through our bodies. 

Although everyone will be diferent - I can certainly see that my red blood cells are nor recovering as well as I would have hoped for - and now understand better about the cumulative fatigue effect for me.

Mind you - you nearly need a science degree to understand it all. It took a while to understand all of the different readings - what was regarded as normal and what was sub normal, lol.

Huge Hug

Sue xxx 

Taran
Member

Re: July 2016 starters

Hi ladies, been trying to keep up but struggling more with this cycle than the last. Didn't suffer with nausea last time but despite all the same meds it's got me this time πŸ˜” and the tiredness has been worse. Hoping it starts to clear the beginning of next week like it did last time. But as it's started much sooner this cycle, I'm not convinced it's going to follow the same pattern at all. But I'm still hoping. Keeping fingers crossed for everyone to have good days and restful nights until we are over the worst of these cycles xx
Flopsy
Member

Re: July 2016 starters

Fluffymittens,

 

Sorry that you feel rubbish. Chemo, I found is very hard physically and that effects our emotions as well.

 

Day 10 is in week 2 where my Oncologist said we were prone to infections. I found week 1 and 2 of my FEC cycle were the hardest and only began to recover on week 3. 

 

It may be another few days until you feel "human" again ot it could lift overnight. We all seem to react differently.

 

Sending a big hug to you ((Fluffymittens)). Hope you have some ways to spoil yourself for a few days.

 

Flopsy
Member

Re: July 2016 starters

Thanks Hazel,

 

For sharing the news on nail treatments. I had Gel on my toes just before my first T&H.

 

On my finger nails I am using Evonail and taking off/ moisturising once a week. I did get one ridged/damaged nail on FEC but that was before I started in the Evonail.

 

All good so far...

 

p.s. I just remembered that the chemp nurse at my clinic told me not to put anything on my fingernails unless it was clear. I wish that someone had done a study or there was some evidence behind all this conflicting advise.

 

 

Flopsy
Member

Re: July 2016 starters

Nellie,

 

Thanks for sharing the news about Lorazpam. I'm going to take a look and see if my doctor can add it to the arsenal of drugs. After 3 x FEC and 1 x T&H the nausea and vomiting is still not under control and we are working our way through the options.

 

It's interesting you mentioned Metoclopramide as I did work out in the end it was that making me fall asleep and feel zonked out. It was so bad I was falling asleep typing on the computer or eating a meal!

 

Hope the red face and neck improves.

FluffyMittens26
Member

Re: July 2016 starters

Thanks Floppy and Pookie for the reassurance. I do think my anxiety is getting worse. But at least I've recognised it.

It is day 10 after my first EC and feel rubbish. Is this the lowest point for the blood cells? Will I feel better tomorrow? Also it doesn't help that I have my period as well. Does this affect it? Thanks all. Hope today is a good one for you all.x
Nellie55
Member

Re: July 2016 starters

Hi everyone, hope you are all managing to get through the day.

 

Just felt I needed to share with you, particularly those on their 1st treatment and 2nd. I am having FEC-T x 6 . After 1st FEC I was really rough with nausea and retching for 48 hours, was taking all the anti sickness drugs they gave me. Anyway after speaking to nurse on chemo unit she said it would last about 48 hours, but tell oncologist when you see him to tweak the meds. Which I did and he added in Lorazepam, take morning of chemo treatment then one in the evening for 7 days. Well what can I say but hurrah!!! I have sailed through the 48 hours no problem at all, yes I do feel mildly nauseous at times but nothing much. On leaving the chemo unit after treatment the nurse did say only take Metoclopramide if the others arent suppressing the nausea very well. Which was news to me as last time I was just downing everything they gave! Can it be that that tablet was making me feel yucky as well? Who knows.  

 

But anyway I won't ramble  but I just  wanted to encourage all your first timers that if you are feeling rough with the nausea etc..do speak to the oncologist and they will be able to sort you out for next time.  By the way, the red face and neck has returned, so 'Angry Bird' lookalike for the next few days!! Lol

haz25a
Member

Re: July 2016 starters

Hi Sue,

Just read your post on the June thread. I wasn't offered a Picc line either. I had my bloods taken by my GP this morning, oh how I wish everyone took bloods like her! Never even felt a scratch. She said she used a butterfly needle, a pale blue one, they are colour coded apparently. I am going to insist that everyone who takes my bloods from now on uses one of these. Still bruised from when the nurse at A&E tried to cannulate me on Sunday, she failed but at least managed to take my bloods.

The nurse from the chemo unit phoned me today and I brought up the subject of my concerns about the veins in my left arm not holding out for the length of treatment. She did say a Picc line could be used IF necessary but went on to point out the pitfalls, invasive procedure, risk of infection etc. etc. so they certainly don't seem keen to use them at my hospital. I'll just have to see how it goes.

I'm getting my head shaved again tomorrow, it's getting everywhere! In my dinner, down my bra. It's only about half an inch long but as my hair is thick and coarse it's jaggy and itchy. I'm getting my wig styled at the hair salon in my chemo unit so will get them to do it as everything is sterile.

Tried to do my nails myself last night, failed miserably. Spent ages putting on a strengthening base coat then some Essie dark plum polish, ended up having to take it all off again as it was such a mess. I've bitten my nails since I was a child so have no clue about nails.

Got my feet done today at my local cancer charity by the podiatrist.

Booked into a salon to get toes and nails painted with Jessica polish next week before chemo. I used to go to this salon quite a lot and became friends with one of the therapists. She had breast cancer two years ago and underwent mastecomy and chemo so she assured me that all their instruments are thoroughly sterilsed and understands the risk of infection. Interestingly, she never knew about the dark nail polish thing when she was having chemo. She had polish on her nails but not her toes, she subsequently had quite bad problems with toenails and her fingernails were fine so maybe there is something in the nail polish that protects the nail, hope so.

Another interesting thing, the podiatrist told me that using Shellac/Gel nail polish is very good for protecting nails throughout chemo but I thought we weren't supposed to use that??

Hope all of the ladies who have had their chemo are suffering minimal side effects.

Best Wishes

Hazel. x
Nellie55
Member

Re: July 2016 starters

Hi AJSilver, I don't think I would try acupuncture in case of infection. How much longer are you on your anti sickness meds for? I'm on mine til Mon, had chemo previous Weds, I can still take the odd one if necessary but found I could cope with the mild nausea. How about taking a couple of Paracetamol before bedtime? Maybe that would help, perhaps have a word with your GP. Have you tried to reason out what the anxiety is about in particular and maybe talk it through with someone. These are only a few thoughts I have, do hope you can get it sorted. Sending you hugs xx

AJ_silver
Member

Re: July 2016 starters

Hi Nellie,
Thanks for your reply. I had my chemo on fri so finished the steriods they gave me on sat so its been ages, i slept ok the 1st two days untill the anti sickness side effects started. Think its turned in to an anxiety cycle now cos the meds must be out my system especially cos i've been drinking loads to flush them. When I feel the sensation of just about nodding off i get an anxiety jab the pulls me back to being awake, so frustrating.

Any one tried Acupuncture????

My friend recommended it to help but my nurse said not a good idea because of infection risk!!!! Aaaaah! Aj xxx πŸ™ˆ
Alex2016
Member

Re: July 2016 starters

Suze65 good to hear your first few days have been manageable too. I've had a bad morning with retching and nausea, could only manage half slice of toast. However, just got showered and washed my hair (hoping it wouldn't all fall out!) and I'm sitting out in garden under shade having Rice Krispies! Just have to take each hour as it comes, never mind each day! Take care x
Nellie55
Member

Re: July 2016 starters

Oh dear AJSilver, are you taking the steroids as well? I found that if I take the last steroid about 5pm when having tea, it doesn't keep me up during the nights. The Lorazepam they have now prescribed me for the anti sickness for my second cycle has really helped and sends me to sleep during the day and Night. I do take Amitriptyline for my fibromyalgia at night and that knocks me out as well. But I found the nausea dropped a lot 48 hours after chemo infusion. So hopefully this will be the same for you? Eat small and often and rest whenever you can, drink lots too and it will pass. You will be surprised how much better you feel when it does. Sending you big hugs xx

Suze65
Member

Re: July 2016 starters

I had my first chemo on Tuesday and I'm very much following you Alex in my reaction to the treatment, including the need for bland food and the surreal situation of the (very nice) sister pumping the poison into me. At least she gave me iced lollies to cool my mouth.

 

It wasn't an easy first day/night, the weather being so hot. Helpful to read other people's experiences of anti-sickness medication. I didn't take my last dose before bed last night as I had indigestion rather than nausea.

What is soooh nice today (day 3) is to have my head back and feel halfway sensible. I can now read a book and concentrate on something. Yesterday I couldn't apply my mind to anything, and was desperately hoping it wasn't going to stay so fuzzy over all six cycles.

 

Thinking of all you ladies out there on the same journey. Hugs!!

 

 

AJ_silver
Member

Re: July 2016 starters

Hi Nellie55,
Just wondering how long it took for your side effects from the anti sickness to stop, im STILL not able to get to sleep and its 32 hours since I had a tablet and i'm like a zombie on speed! 😡 Just cant seem to tip over in to a deep sleep. Only getting an hour or two of dazed sleep. Going crazy! The doc gave me sleeping pills on tues but they made me freak out too, my husband said i was tripping! 😱 Ajxx
Alex2016
Member

Re: July 2016 starters

Mad hatter, I just replied to you post, but for some reason it has not appeared ☹️I'll try and remember everything I said in it lol

Yes, got first chemo Tuesday past and so far it has been relatively ok. Early days yet, I know. Fuzzy head and nausea, and some retching, but not actually sick. Can't stand the smell of foods cooking. Just been eating Rice Krispies, (which I haven't eaten for years - don't know where that craving came from !) chicken soup and toast. Little and often seems to work. But totally manageable. Throat bit sore this morning and mouth dry, but find sucking sweets helps.
I hope when you see the Oncologust next week you are good to go. The anticipation is awful as I have been there too. I am just glad now to be on the chemo roller coaster. I must say it was surreal letting the Nyrse 'poison" me with the drugs. I just sat there thinking 'I can't believe you're doing this to me' lol. I went on my own , as I thought I might have been emotional with someone with me, as I think you feel quite vulnerable once you sit on the bug chemo chair! I was fine and the actual process only took 45 mins.
I know it is not easy, but try and put it to the back of your mind, meet friends for coffee, do things you like doing, as I have a strong feeling you will start next week and you may as well have a nice few days under you belt. Also, I did take myself off Forum for a while, as I found that I was focusing on posts regarding anyone having bad side effects and that wasn't helping me at that time. But I find I'm now trawling though again to get some tips, as it is invaluable. Be thinking of you X
Sue H-S
Community Champion

Re: July 2016 starters

Hi Hazel

glad to hear you are coping ok with your chemo, so far.

As to using the op arm - my team - despite real challenge due to hardened and painful veins - will not use the other arm, because of the lymphedema risk. I had 3 nodes removed.

The risk is simply there and In my eyes not worth taking, as if you do get it, it can affect you for the rest of your life.

When I went for my bloods yesterday, pre chemo number 4, they took three goes to get any blood, as my veins are so very bad and very painful now. One nurse said, well, we could use the other arm, but we won't apply the tourniquet - as that causes most of the issues.....So I asked, but what about the risk generally? As advice is ANY injury - and she said - yes there is a minimal risk. Well I certainly am not prepared to take any risk. Enough of a battle to deal with BC, reconstruction, etc - having veins going bad in two arms? - Not a choice I will make - one set of knackered veins in one arm are enough. It will take a long time, once active treatment is over, for them to recover. 

So It might be best for you to have a PICC line installed - I wish they would have offered it to me - it would have prevented the challenges I now have. They will 'save' your veins - as bloods are taken that way, too - and you do not have to worry about using your other side.

Hugs

Sue xxx

madhatter67
Member

Re: July 2016 starters

Hi Alex, I finished my antibiotics today - have appointment with the Oncologist next Wednesday and if he happy with everything my treatment is to start the same day.  I Have so many mixed emotions - was due to start treatment on 7 July thenbecause of infection now due to start next week.  I know the treatment is necessary but am worried how I will cope, possible side effects etc.  Think we all the same and just ned to get on with it.  Think you will have had your first session - how did that go?  Thinking of you and all other ladies going through this journey.

 

x

 

Flopsy
Member

Re: July 2016 starters

Pookie,

Don't be afraid of going back to the unit if the nausea and vomiting don't pass. I regret not being more proactive about this. After the first three drugs from the unit didn't work my consultant tried Emend and although that stopped me from throwing up the severe nausea continued and after 3 days of that drug it was back to vomiting again. 

That was the end of my FEC's and my consultant said I shouldn't be sick on T&H. Needless to say I was. Didn't make it through the T infusion. Then we tried something used for motion sickness and that finally helped but I had to take a lot of it and it wasn't 100%,

There's quite a good list of meds here

http://patient.info/health/medicines-for-nausea

Hope you feel OK and don't need it though!

Flopsy
Member

Re: July 2016 starters

Fluffymittens, 

You are certainly not a bother. Please don't feel like that.

My hair and scalp grew excessivly dry with Chemo but I have heard others say their hair is oily.

Could the pain in your back and shoulders be the chemo? Are you on any injections as well. I had a sore back and shoulder after Filgrastim injections. This was during my first cycle of Tax and Heceptin.

I'm glad that the nurse phoned to say the MRI didn't show up anything else.

This is still a serious and worrying position to be in and although we can know something in our heads something that doesn's stop the worry. Sorry that I don't have any words of wisdom. Can quite understand your worry. The drugs can have an effect on our emotions as well. Last week I felt unusually agitated and that's not like me at all. 

 

haz25a
Member

Re: July 2016 starters

Evening Ladies,

 

Pookie - Well done on having your first treatment. I hope the nausea isn't too bad for you. Also, the others who are suffering from nausea, I hope you all feel better soon.

 

Nellie - Lorazepam! Ha, unfortunately I have been in the psych ward a few times for my depression/anxiety so am familiar with this drug as an anti-anxiety med. My GP and CPN (Community Psychiatric Nurse) were really surprised when I told them it was used as an anti-sickness med in oncology. It's great for getting a sleep.

 

My hair is shedding very quickly today, glad I got it shaved beforehand although it grew in quite a bit so I'm still leaving a mess around the house. Loads came out in the shower this morning. I'll be furious if I still have to shave my underarms and legs with a bald head! Oh, my "bikine line" is almost gone now as well, so that's a bonus I suppose.

 

I'm back to GP tomorrow for another full blood count as I have a cold sore, rash on back of hand and my period started a week early and is still quite heavy. I only had my bloods done at A&E on Sunday. I had a mouth infection and was told to keep an eye on my temperature. It was below 36 around midnight on Saturday night and by Sunday lunchtime it still hadn't gone up so phoned the chemo helpline and they sent an ambulance to take me to A&E, I was mortified as all the neighbours were in being a Sunday afternoon and I felt fine and told the chemo unit and the paramedics I felt fine. Thankfully bloods were ok and I was allowed home.

 

Oh, another thing. I've had surgery and 3 lymph nodes removed on right side. I think I'm going to struggle with my veins just using my left arm. My chemo nurse said that 3 lymph nodes was ok to use surgery arm but I am reluctant. Any opinions, advice?

 

Hazel. x

Nellie55
Member

Re: July 2016 starters

Oh Pookie1, sorry to hear the sickness pretty grot, I was like it on my first FEC for the first 48 hours, I then picked up and each day got better and better. Do ring the chemo unit if you are still feeling rough tomorrow, they may be able to offer more advice. Rest assured they will tweak your anti sickness meds before the next chemo. They did with me and today I have had my 2nd FEC, with my extra new anti sickness med and it has worked a treat! No nausea at all until 7.30 tonight but downed a Lorazepam and feeling better.cannot believe the difference, do speak up about it! Sending you hugs and hope you get some sort of sleep tonight. Xx

Nellie55
Member

Re: July 2016 starters

Hi AJ Silver, sorry to hear you've had SEs with Metoclopramide. It wasn't until you wrote that post that I realised I had similar SEs like you with it. However, today at my 2nd chemo the nurse gave me my goody bag of meds and said only take Metoclopramide if the other anti sickness don't seem to be holding the nausea at bay. Well so far I haven't taken any Metoclopramide, just sticking with Ondanestron, Dexamethasone, Emend, and Lorazepam and I'm feeling ok, compared to last time (which was horrendous for 48hrs). So pleased that it is now sorted for you, all these experiences we share, do help some of us, sometimes you think you are the only one feeling these SEs, and we know everybody's different. So thank you for sharing that.....😊 Xx

Nellie55
Member

Re: July 2016 starters

Hi Bella boo, thank you for your thoughts. Well I took the Lorazepam as directed 2 hours before chemo and although a bit dizzy and lightheaded, the chemo went a dream, ok, a little painful as being injected but I felt chilled out. Came home, no nausea!,!, had light tea no nausea!! Very tired so fell asleep on recliner in garden (in the shade I might add) took steroid and Ondanestron, promptly went back to sleep and woke up at 7.30pm to take second Lorazepam. Felt a little nauseous but now resting. I can't believe what a difference that tablet makes! Wish we had the thunderstorms and rain here down in Dorset, it is unbearably hot. Hope you get some sleep tonight. Xx

Pookie1
Member

Re: July 2016 starters

Well Ladies, I did it! But boy am I going to be in for a tricky few days. Already feeling so sick despite the cocktail of anti nausea drugs administered today.....supposed to get me through til tomorrow! I've been given 4 different tablets to take. The nurse was surprised and wondered why I was given more than usual and asked had I had trouble with sickness in the past. I told her I was sick for pretty much the whole nine months of each of my pregnancies and she said "Aah, that's why"!

Thank you for thinking of me Taran and Bellaboo : )

AJ, glad you figured out your jittery feelings, hope you're feeling much better now!

Bookworm, how cool that you have such a cutting edge oncologist! I wonder if the fortnightly cycles are less hard with the side effects (like the weekly taxol is supposed to be). Interesting. They're always working on new things which I think is great. 

Nellie, hope it went ok for you today, I was thinking of you. I don't think anyone else had it today, but if you did, I wish you tiny, minescule side effects and send hugs xx

Nellie55
Member

Re: July 2016 starters

Taran, sorry to hear you couldn't sleep, hopefully you can catch a few hours here and there through the day.  Why are the hairs on our legs so stubborn? Even my underarm hairs are still there. I haven't liked to shave the left since I had ANC, which was May 11th! So you can imagine how long they are now! Feel like a gorilla, in fact the hair has covered the scar!!πŸ˜€. As the feeling has not returned I'm a bit unsure whether to try an electric razor - don't want anymore problems! Xx

Nellie55
Member

Re: July 2016 starters

Oh Bookworm, sorry to hear how nauseous you have been feeling! That is the worst part for me. Hopefully you have been able to get some rest today. My nausea lasted for 48 hours then tailed off and was really manageable, hopefully this will be the same for you. What you do know though is that you will get better! Hopefully the patch will ease it. Just think what it is doing to the baddies?! Chin up, you can do this. Sending you hugs xx

Pookie1
Member

Re: July 2016 starters

Oh Fluffy, not stupid at all. Probably unfounded but totally understandable as, if I remember correctly, you're having chemotherapy before surgery so you still have the lump. Psychologically I guess that can make you worry more. Your nodes were clear so that's a strong indication that it hasn't gone anywhere, your scans were clear and now you're zapping it, it's probably even less likely to travel. And the positive side of having chemotherapy before surgery is that you get to be certain that it's working. Try not to google!! (That's the piece of advice I've been given the most through this entire thing!) and just believe the chemotherapy is doing its job and killing the little blighters.

pookie x

FluffyMittens26
Member

Re: July 2016 starters

Hi all.
Hope the hot weather is not affecting you all too much. I hope I'm not being stupid by what I say. I can't seem to get rid of the anxiety and paranoia that it has spread. Every twinge panics me. My stomach hurts my back and shoulders do. I Google things too much. Despite the BCN phoning me earlier to say that the breast mri didn't detect any new unseen cancer or any in my lymph nodes. I still think that it is everywhere. I know i am lucky. But does these feelings go at all? I know it's not been three weeks since diagnosis and it might be the chemo. But I can't stand feeling like this. My head and body feels like it is going to explode.

Also, does ec chemo make you have greasy skin and hair? Mine isn't dry at all. More like a teenagers.

Sorry for bothering you all on this thread.x
Flopsy
Member

Re: July 2016 starters

 Hi AJ Silver

 

Aaah - the side effects of the treatment for side effects...

 

It's hard to tell when we are taking so many drugs what are the SE's from the Chemo drugs and which are for the extras we get (steroids, Filgram injections, anti-sickness tablets)

 

It took me a long time to work out that Metoclopramide was causing some of the SE's I had attributed to FEC. It wasn't until I was on my first T&H cycle, the nausea and vomiting was back with a vengeance and taking Metoclopramide just about put me back in a coma again.

 

I started falling asleep during meals again or working on the computer. My head would just hit the table in the middle of a conversation. I was very dizzy and confused and fell over. I had thought it was the FEC.

 

Fortunately there are at least 6 different pathways that can cause nausea and vomiting in the body so there is a wide range of different drugs that can be prescribed.

 

I'm currently trying one used for motion sickness and there is another prescription on it's way to me. I've had to defer my T&H infusion until next week

 

How's your nausea and vomiting?

AJ_silver
Member

Re: July 2016 starters

Hey ladies,
Anyone been taking Metocloptamide anti sickness and having problems. I've had hellish jitters and agitation for days and have finally worked out its not the steroids but these tablets! Really dissapojted my GP
Didnt pick up and just fobbed me off with a sleeping pill that made me worse. So glad to get to the bottom of it. Aj xx
Taran
Member

Re: July 2016 starters

Bella boo, I started using an electric shaver for my anc arm and it's been fine. Might be worth a try? I couldn't stand it for long so didn't wait too long before shaving it. Need to do it in front of a mirror though because I can't work out from sensation where I am shaving πŸ˜‚

Good luck today Pookie. Sorry I missed you earlier!xx
Bella boo
Member

Re: July 2016 starters

Good luck today Nellie and Pookie. I hope the new meds help Nellie and you manage to get a rest whilst in there. Taran and Bookworm I was in the wide awake club on Monday night and only managed a few hours sleep however last night despite the heat managed to get a whole 5 hours so feel a bit better today. Taran I've still got my underarm hair which is most disappointing as I've been unable to shave from where I had my ANC and really need the hair to go soon!! Head completely shaved and that's helped with the hot sweats. Currently we have rain and thunderstorms which has cooled everything down nicely hope it stays like this for at least a few hours. Hope everyone has a minimal SE day today xx

Taran
Member

Re: July 2016 starters

Nellie, good luck for today. Glad it can go ahead. I feel the same not wanting any delays even though it seems a bit crazy to be wanting chemo!! But seen as we have to have it, we may as well get it over with as quickly as possible! And the leg shaving is annoying me too. My underarms are nicely fuzz free. Hurrah! But still had to shave my legs the other day for my summer dress. Wasn't impressed!! Lol xx
Taran
Member

Re: July 2016 starters

Hi Bookworm, just to say you are not alone in the wide awake club. I've been lying here since about 1. Also really suffering with the heat and feeling more nauseous than last time which I'm sure is because of how hot I am. Finally starting to cool down a bit but still wide awake. Looks like day 1 of the school holidays will be done on 3 hours sleep max!! Oh well, at least I can take my next lot of steroids in a few hours and hopefully that will keep me going for a while!! Hope you manage to sleep soon. And hope the patch works and sorts the nausea out for you xx
Bookworm48
Member

Re: July 2016 starters

Oh and Pookie I'm having 2 weekly EC instead of 3 as my oncologist was involved in a research paper which showed a good response for patients on dose dense regimes so he's been using this approach for a while. I've only got one more and then switch to weekly T. How much of a gap will they give you after your last FEC before starting weekly T? The usual 3 weeks? Xxx
Bookworm48
Member

Re: July 2016 starters

Good luck Nellie. Great that you can still have the treatment. Hope sickness is easier for you. Well I had second EC yesterday. Now wide awake at 4 am feeling v v v nauseous but haven't actually been sick. The heat, even with 2 fans isn't really making this any easier! Fingers crossed I drop off soon. Dr said I might be allowed a 3 week gap next time instead of 2 as my liver enzymes were elevated and yesterday was the first day of really feeling human again and now I feel back at square one rather.... still another treatment ticked off and tomorrow I am getting a patch to help with the sickness. They were out of stock yesterday. Happy days. Hope everyone else who had treatments yesterday- Taran, Suze, Alex, Bella all doing ok and all the very best for today Pookie and Nellie and any others I've missed. Xxxx
Nellie55
Member

Re: July 2016 starters

Thanks everyone for your thoughts, sorry I've not been posting but I have been absolutely shattered from the family staying, such a lovely time but I didn't realise how it has taken it out of me and I've only just finished my 1st 3 weekly FEC!!! What am I going to be like on cycle 3, 4 etc...?! My sore throat has gone now but left with a stupid irritating tickle that makes me cough at times. It hasn't gone into a full blown cold of which I am so thankful. I rang chemo unit this afternoon and told them everything, they checked on my bloods from Monday and said I'm fine to have 2nd cycle tomorrow! I was so pleased, then I thought I must be mad - being pleased to get my next chemo???!! πŸ˜€ I am a bit apprehensive about tomorrow only in the fact will this extra drug Lorazepam really help with the nausea and retching? I just need to get through the first 48 hours and I know I'm ok. I can put up with the shakes, red face, shivers, flushes etc...

 

Taran, Bella boo, Alex and Suze hope your treatment has gone well yesterday and today and that you don't get too many SEs. Good idea Taran to get your hair shaved completely, mine is virtually gone now apart from a few bits of stubble here and there, but it's taking longer to go from my legs! Was hoping I wouldn't have to shave my legs again!

 

Pookie1, really hope all goes well tomorrow with your 1st infusion and that your PICC line went in today without a problem.

 

Treated myself to a new pair of baggy trousers and a couple of tops today, thought I would wear them tomorrow for my 2nd FEC, give me a boost and be more comfortable sitting in the reclining chair! Hopefully I will drift off to sleep.

 

Hope everyone has a good night sleep despite the heat. Xx

 

Kath64
Member

Re: July 2016 starters

Hi there. Thanks for the welcome. I hope everyone's treatment had gone OK. I found out today that my appointment for chemotherapy will be at end of August. Part of me thought great, I can put it off a bit longer and the other part thought that the sooner it starts at the sooner it will be over. Lots of mixed emotions at the Moment! X
Flopsy
Member

Re: July 2016 starters

AJ,

 

If you can get someone to look at your spots if not sure.

 

I ended up with an outbreak of cold sores over my face during one of my first FEC's. I needed some antiviral drugs for this in the end but washed with tea tree did make a difference

 

 

Bella boo
Member

Re: July 2016 starters

Thanks for you kind thoughts Pookie. Good luck today Taran, Suze, Alex and bookworm. I think that's all of you today. I had my second fec yesterday and all went well. Apart from lack of sleep due to the steroids I'm feeling ok today though hot flushes and a heatwave aren't the best combination so will be keeping out of the sunshine today. Nellie did you contact the unit re your cold? Are you still on for tomorrow? 2 down four to go so it's progress we'll soon be nearing the end xx