starting chemo in june 2014

[Cas164]

Thank you Cowgirl for the run down on the docetaxol. It is always good to know and be prepared. I will make sure that I have a supply of pain meds should I need them.

When I was diagnosed I suggested that if I could sleep for a year and wake up and it will be all over I would be much happier! I will look at the next phase as my sleeping phase .

Julie glad you are enjoying the commonwealth games isn't it lovely to be normal and forget what we are going through.

Roxie you too hope your next treatment goes well.

Onwards and upwards. Cas x

[cowgirl]

Hi Cas,

I just finished my 3rd round of Taxotere (aka docetaxol) yesterday.  My protocol is called TC, because I also get Cyclophosamide at the same time.  I lost most of my hair and just buzzed it down to stubble.  I have not had any problems with veins or vein pain.  My blood counts have been normal each time - maybe it helps that I get a Neulasta shot the day after treatment.  I am good the day of infusion, but start to crash the next day.  This involves bone pain (I take pain meds  - Aleve and Tramadol - for that), feeling exhausted, a few spells of mild nausea and it feels like my legs are filled with sand.  I also have had a mild headache that can go on and on - (Aleve helps me with that.)  Mainly, I sleep a lot.  I can sleep all day for one or two days after treatment and sleep at night, too.  My doc prescribed a sleep medication - Lorazapam - and it works great.  I only need it for about 4 or 5 nights after my chemo each time.  I don't know for sure, but compared to the awful side effects that put some of the girls from our thread in the hospital, I think the docetaxol might seem easier that what you have been on....So, basically, I have the TC every 3 weeks for a total of 4 treatments and in my case I feel pretty crappy for about 5 days after treatment (mostly exhausted - no energy) and then I feel pretty good for the next two weeks.  I hope yours goes well.

[Roxie65]

Hi Julie

Wont it be lovely if in a couple of weeks we can both say we are 2/3 or the way through!! xxx

[Julie286]

Hi all. Roxie, that sounds quite positive and fingers crossed that everything goes ahead as planned next week. Round 4 of 6 hopefully a week on Wednesday for me too! Just this afternoon got that 'normal' feeling after 10 days of varying degrees of yuk -it's like someone switches the light back on! Now sat watching the athletics with my 15 year old curled up by my side, hubby away at the commonwealth boxing, a hot vimto (closest to a brew I can bear!) one of those lavender scented bean filled heat pads that you heat in the microwave on my sore arm, and for tonight, all is well with the world. Hope everyone gets through the weekend without too many SE's Xxxx

[Cas164]

Have many of you been on docetaxol yet? Looking at the SE it sounds pretty grim. I know we are all different and react in our own ways but I have to say I'm a little anxious about it. I've had my 3 FEC.'s now just hitting day 10 and looking forward to a good week prior to switching to the docetoxal with herceptin..

I'm mighty happy to be halfway through the chemo but anxious about what the other half will bring.

I had a port fitted after my first chemo , I now see why they were keen for me to have it. My veins on my arm where I had chemo 1 through a cannula are sore and I now understand why.

Have a good weekend everyone.

Cas x

[Roxie65]

HI Ladies

I have just got back from the pre chemo check and asked about my arm.

My oncologist told me pretty much what most of you had already told me!  Its the Epirubicin that irritates the veins and she said that when I have chemo in future to tell the chemo nurse that I need it well flushed to avoid this as much as possible.  She did say that unfortunately it is part of chemo but it will get better once the chemotherapy has finished.  Mind judging by Yankee this may take some time!  I am at least pleased that it will eventually get better but the thought of another 3 irritating an already sore vein really doesnt make me feel good!

Still onwards and upwards 3 more to go and this time next week I will hopefully be saying only 2 left!

Good luck everyone! xxx

[Yankee]

Hello June ladies -- I've been trying not to post on your Forum, as my best friend is amongst you, and I don't want to invade her territory! However, couldn't resist with all the talk about vein problems.  I had FEC-T.  FEC is very, very hard on the veins -- some of the other regimes may be too, but I don't know.  The flushing bit is terribly important.  If your hospital is leaving it out, do kick up a fuss!  

Unfortunatey, it is really true about the vein problems not clearing up when chemo is finished.  I am 13 months past the end of active treatment and it is nearly impossible for the vampire at the GP's office to get a blood sample.  My veins still hurt and look funny.  However, they are better than they were, and continuing to do the breast exercises helps.  If I were ever to need chemo again (Lord please, NO!) I would insist on a PICC line or portacath.

They don't ever really tell you how long it takes to get over treatment -- I have been unpleasantly surprised -- but it does happen finally.  Just in the last 6 weeks or so, I have realized that I am coming out of it..  Love to you all, Yankee

[Julie286]

Hi all! Just to let you know, I asked the breast care nurse about the 'vein pain' and she has referred me to the physio. Got an appointment on Tuesday and she'll go over exercises and massage techniques apparently ...... Will let you know how it goes! Hadn't realised tho that it won't go away once the chemo finishes?? Don't like the sound of that - it's very restrictive. Hope everyone is getting through this ok. Lots of love xxx

[Pixie100]

I still have hair too after three rounds of AC although at the point now where it's so thin on top I have to cover my head with something, front back and sides are still looking normal. Slightly unfairly my leg hair has been growing albeit very slowly and prob only need to shave once every ten days or so. My eyebrows started to thin out too and am now filling in the gaps with powder. I was told to expect to lose all of them on the T part which will be very strange as have always battled with my thick brows, time for a new look?!

Have my last round of AC on Friday this week. Feeling a mixture of dreading having to go through the side effects again and relieved that it's the last one. I've just had a really good week and even made it to Cornwall for long weekend camping in fabulous weather, my mini summer holiday!

[Cas164]

Hi all,

I'm 1 week post FEC 3 and I still have hair! Ok not lots and it really is pretty disgusting but I can get away with a baseball cap still. I switch to the t part next cycle which I'm apprehensive about. I suppose you get to know what to expect then it's all change.

Runner it sounds as if we are doing things in reverse order to me. I have to say I persevered with the cold cap but it wasn't pleasant last time but what I do realise is that it has left me with some hair on my head, but not a hairstyle that I would be seen out with! That's on FEC so when I go on to the T will it all go?

I suppose we are all different and react differently let's just hope that it is blasting the cancer cells and they are suffering more!

Cas x

[Roxie65]

Thanks Sheryl
Sounds exactly like my veins so I will keep up with the gel and try your other suggestions. So good to hear from other people about these side effects as although they are never good at least we know they are part of all this rubbish!!
Thanks Karen xxx

[Louise3721]

Runner29 yes you do loose all hair with FEC and i do mean all hair! On the plus side showering is very quick and you don't have to shave !

[Sodastream]

Hi Karen. The vein they used on cycle 1 and 3 are still lumpy and the nurses have said they won't be able to use these again. These were the veins on the inside of my arm between my wrist and elbow. They both still look dark but only hurt if you press them. After each cycle they ache a little in the first few days. The ones they used on my thumbs have faired much better. I'm lucky that I haven't had surgery yet so no restrictions on which arm so I've been alternating each arm. Have 4 doxetaxol to get through but have heard it doesn't irritate the veins as much so hopefully that's all my vein issues over now. Keep using the ibrufen cream and apply ice if really painful. I also felt that if I slept with my arm raised up on a pillow at night it helped and didn't feel so tight the next morning. Good luck with the rest of your treatment. Sheryl x

[Roxie65]

Hi Sheryl
Thats good to know I will insist on it and create a fuss if need be. Had your vein got better by the time you went for your next chemo as mine does not seem to be improving, only the skin getting lumpy.

Karen xxx

[Sodastream]

Roxie I posted earlier on this thread about my vein problems. Just to let you know that I had no pain what so ever this time due to the large bag of fluid being flushed through at a fast flow. I had asked for it at my 3rd FEC but the nurse said it wouldn't make a difference however it was a different nurse that suggested it on my 4th having seen my cording of veins. You may have to insist they do it but definitely worth it to stop the problems. Sheryl

[Roxie65]

Hi Claire
I am on week 2 of my 3rd FEC and as yet haven't shaved my head but I literally have a very thin bit of hair that is mostly at the back ,my sister says I remind her of little Britain but much thinner hair, you can guess what one. I have kept this as when I wear a cap a litre tiny bit of hair pokes out and people assume I have much more than I do!

As far as my eyelashes and eyebrows are concerned both are still there but much more sparse. My bottom lashes and eyebrows have taken the biggest hits so far.

I was told FEC will take it all by my chemo nurses and each round seems to take a little more.

Karen xxx

[runner29]

I just wondered how many of us ladies have lost eyebrows/lashes and has your hairloss been complete hairloss on head?

I'm on week 3 of my 3rd docetaxol and changing to FEC on Monday. At the moment my shaved head is patchy, back and top still have hair but sides where I sleep on it have rubbed off but still have a covering of light baby hair. I seem to have lost a fair few of my bottom eyelashes but the top ones are hanging in there.

My friends got me an appointment for a lesson and palette to go over my eyebrows which I went to today but I'm wondering if when I change to FEC it's all going to go, the chemo nurses have said yes it will.

Other than that I'm doing ok this cycle, no hospital admissions this time yay! Learnt to do my own gcsf injections, only took 3 cycles lol! Apprehensive about the change to FEC on Monday as don't know what side effects I will have or when but fingers crossed they will be kind!

Hope everyone is ok? Claire xxx

[Roxie65]

Thanks Louise...I have tried moving it around a lot today but its so sore to do lol...now the vein on the inside of my elbow has gone hard so think I may have over done it today.....will try again tomorrow with the exercises and just use more gel tonight!!! As you say far better than the cancer so onwards and upwards. Glad you have the end in sight that must be a nice feeling just one more.

Good luck everyone hope you are all doing well!! xxx

[Louise3721]

Hi Roxie I am from April thread and had 5/6Fecing FECS ! I too have vein ache it has been relieved alot by ibruprofen gel. I have used the lowest strength and found it very good. Just make sure you don't take the tablets too. It's another unfortunate side effect but better than cancer . Good luck x

[Roxie65]

Hi Sue
Thanks for that I will start exercising it to see if that helps and use the ibuprofen to make it easier. I have my pre chemo check this Friday so will mention it to my oncologist then and see what she says. Not sure I want to have to learn to live with it so I hope its from the "E" part of the FEC as I am having a higher dose of that one.

Thanks xxx

[polar_1]

Hi again Roxie65,
Another update on vein pain. I have just been googling and it seems a lot of people have pain caused by the Epirubicin part of fec and I know remember that the chemo nurse also mentioned it yesterday. The reports from people seem to suggest that it will get better and that massage, stretching, heat and tablets mentioned in previous reply can help. Some also mentioned Hiradoid cream that you can get from your GP.

Fingers crossed that they are right and our pain will go in time. Sue

[polar_1]

Hi Roxie65
I started with a pain in my arm one week after my 2nd fec cycle. It hurts when I stretch my arm forward and have my palm up. I don't know if it is the same pain as you have but I had my 3rd fec yesterday and asked the chemo nurse about it before having the cannula inserted. She said it was something called cording and explained that the chemo affects the veins comparing it to when a piece of elastic gets worn it frays!!! The good news was that it did not affect my chemo yesterday but when I asked if the pain will go once the chemo is finished she said that it won't. She did suggest stretching the arm regularly and to do the post op exercises that I did on my other arm. Taking Paracetamol or Ibuprofen was also suggested but take temperature before taking Paracetamol as it can affect it. Might be an idea to phone your BCN if you have another week to go to your next cycle of chemo to see what she thinks. Hope that helps. Sue xx

[Roxie65]

Thanks runner I will ask and see what they say but in the mean time will try ibroprofen gel as I really don't want anything to hold up chemo if I can help it. I still have another 3 to go and not sure if my veins will cope lol. xxx

[runner29]

Hi Roxie, the only thing I have read about is ibroprofen gel for the veins. How many more chemos do you have to go? I'm not sure if you'll be able to have it but you could try asking for a PICC line? I have one in as I was worried about vein problems and it makes chemo and bloods easier too as they don't have to keep stabbing you. Might be worth the ask. Xxx

[Roxie65]

Hi Everyone

I still have a really sore arm and veins from the last chemo and its now day 13.  Has anyone else still got it or has anyone been avised by the hospital what will help get rid of it.  I am starting to worry it will still hurt when it comes round to the next chemo and this may hold me up.

Thanks. xxx

[Athens]

Hi Cas

Great you are now more than half way through. Days in pjs are fine as long you enjoy them and not feel guilty!

Athens

[sugar8]

Good morning ladies Just popping in from the July Thread 

Angel77 -One of our ladies on the July thread got swollen feet and she said that she looked like a chipmunk.So the answer is yes I suppose.

Thanks guys for pre warning me about the chemo brain and words. It's good to be prepared and Pixie100 thanks for the advice about the Baptiste shampoo. I shall definitely try it if needed. 

Good luck ladies

Upwards and onwards

x x

[Cas164]

Hi All,
Yay 3down 3to go!! Yep all went OK except cold cap was not pleasant this time as my hair is so thin not sure whether it's worth it?
Not been feeling great but I know it will get better it's the first time I've stayed in my pj's all day but I think that's allowed!

I have to say that my kids look at me as if I'm on another planet because I'm talking utter rubbish now is that the chemo? Or what kids normally think their parents are talking anyway?

Casx

[Julie286]

3rd FEC. Done. Cas, hope yours went ahead with no issues today. My bloods were 'borderline' but just ok enough to go ahead. Half way through, feels like a big milestone. Really funny (and very reassuring) to read that other people are getting their words mixed up - sometimes I struggle to even come up with the right word! I did think I was going a bit doolally!! Love to everyone. Hope you're all ok xxx

[mummy2dolly]

I can't remember anyone's name...... More so when they come up in conversation..... It's very embarrassing!!

On the plus side I can just about still manage a very slow 5k treadmill run. But it is very hard work. I am so upset at how my fitness and stamina levels have plummeted in such a short space of time. I went to Yoga and Pilates yesterday which was ok. Just cardio seems to be almost impossible..... My friends consoled me by reminding me that most people who aren't having chemo can't run 5k and I've had 3 cycles and still can. So that cheered me up a bit. I'm hoping to get a charity place for VLM next April which is why I'm trying very hard to maintain a base line fitness......

My 4th and last AC does has been brought forward due to my onc being away and the stand in not being there when my next dose is due. It's next Monday now instead of Thursday. I'm glad in a way. I want to get it over and done with. I hope my WCC is high enough to do it, it was borderline last time........

[angel77]

Oh i have been messing my words up too i thought i was going bonkers 🙂 glad its not just me..
Has.anyone had swollen feet while on chemo and herceptin.im.onTc-h.. mine.started yesterday and.never had it b4 but last week my oncologist ask if ive had swollen feet and i said no and now.i have 😞 x

[Roxie65]

Hi Athens

Glad your back on track with your chemo and I hope you are now feeling better. I know what you mean about messing your words up and losing things too, some days its just seems too much effort for my mind to work and mid sentence I give up lol. Just think of the tales we will all have to tell when all this rubbish treatment is over, we will be able to enthral a crowd for ages with our mishaps lol.

Good luck and heres to no more problems. xxx

[Roxie65]

Hi Cas
Fingers crossed for a better time this time and I hope when you move on to herceptin only you find it easy too. I know we are all different but always good to hear the times may not all be bad!!! Good luck xx

[Athens]

Hi all

I had my second FEC two days ago on Friday, after a two week delay, first week delay due to low neuts and second week delay due to high liver count. I got an injection on Saturday to help avoid the low nests this time. So far I am having the same pattern as with the first FEC, I.e. A yucky 2 days feeling not great. Managed to drag myself out for walks both days and did a bit of tidying up in the house. New development is that I keep messing up words eg I was in a charity shop and asked to have a look at the "fire arms" when what I meant to day was "fire irons". I did get an odd look from the shop guy! I am also lossing things - most annoyingly I mislaid my favourite beanie hat two days ago, in a matter of minutes, somewhere in the house and it has not yet turned up. Still, if these are the worst of my woes I will be doing ok.

Take care all
Athens xxx

[Cas164]

Hi Roxie
Glad you are doing well on your 3 rd FEC, fingers crossed ill be doing the same with mine on Wednesday ! Also good to know that the herceptin should be a walk in the park compared to the rest if it!
Casx

[Pixie100]

For anyone with thinning hair my hairdresser recommended a dry shampoo spray called Battiste. He said its the best dry shampoo and not an expensive product. You can get it in boots and it comes Iin different colours. I've just tried this on the hair covering up my bald patch and it's puffed up thr hair a bit so you can no longer see my scalp even if looking for it. I did a skin test before using it as it's not fragrance free but seems to be fine.

[Pixie100]

For anyone with thinning hair my hairdresser recommended a dry shampoo spray called Battiste. He said its the best dry shampoo and not an expensive product. You can get it in boots and it comes Iin different colours. I've just tried this on the hair covering up my bald patch and it's puffed up thr hair a bit so you can no longer see my scalp even if looking for it. I did a skin test before using it as it's not fragrance free but seems to be fine.

[Sodastream]

Hi just popping in from May thread. I've also had the vein pain. I was in hospital the first time it appeared which was day 5 after my first FEC. The oncologist called it thrombophlebitis and told me to elevate my arm when possible and alternate applying ibrufen cream and applying ice to the area. I found the cream helped a little and by sleeping with my arm elevated on a pillow at night. It did take a long time to stop being red and hurting and a good few days before I could straighten my arm. The vein is now corded and they won't use it again. The second FEC I had in my hand and had less problems with just a bit of red and soreness further up my arm but only for a couple of days. The third FEC they put in the same place as my 1st but the other arm (I've not had surgery yet) and again it started hurting on day 5 and went red like a burn and took at least a week before I could straighten my arm. The 1st and 3rd were put in the vein on the inside of my arm that runs between my wrist and elbow. I've just had my 4th and last FEC and insisted it was put in my hand so the nurse put it in my vein running from my thumb he also saw my other veins and said he'd run a large bag of fluid through afterwards on quick flow which should help. I'll let you know in a few days whether it did. Hope this helps. X

[Roxie65]

Hi all

Well day 4 of 3rd FEC and I must say apart from the sore arm others seem to have and the fatigue that comes with the chemo I am actually feeling quite good this time.  I had decided after FEC 2 and 10 lousy days that would be normal for me so am really pleased to report this time how much better I feel now I have the right medication for the side effects.  So thanks to everyone who told me what to get from the Oncologist for these they seem to have worked.

I hope the fact that after a rubbish cycle I have now had a good  one brings some hope to those of you about to take on you next chemo, take your meds as has been said before and make it as easy as possible for yourself to get through it. We are all heading in the right direction!!!

Good luck to you all xxxx

[polar_1]

Hi Julie I also started to get a pain in my arm one week after my second fec. It only really hurts when I put my arm straight and as you say when it is stretched or when you I twist from the wrist. I have tried Ibuprofen but not getting much relief. Sue xx

[Louise3721]

Julie I too get vein ache I use ibuprofen gel from chemist this works well and I know other ladies use lavender hand cream

[Pixie100]

Hi everyone

Finally feeling almost back to normal day 9 after round 3 of AC and taste coming back. Had similar side effects this time but more intense and they lasted longer. Also a lot more tired. I have one more round of AC to go and although dreading it at least it is the last one and guess I just have to plan to be out of action for ten days then it will be over. After that I will move to Taxol weekly at a low dose and my onc said it should be easier, nurses also said those who suffer on AC tend to do better on Taxol and vice versa. I'm very worried about the peripheral nerve damage which is a common SE.

I still have hair although it has started falling out again. I have a bald patch on top but clever hairdresser had cut my hair in a style where I can brush over the hair around it and it looks ok. My hairdresser cut my wig for free and did a brilliant job. It looks like my own style grown out a bit, but I hate the thing, it's so uncomfortable to wear. I also bought a suburban turban which I'll probably use more when time comes to have to cover up.

Good luck to everyone with round 3, I guess many of you are having 6 cycles and will be halfway through!!


Px

[Julie286]

Morning everyone. Hope you're all doing ok. Can is ask a quick question? My veins are really sore and it hurts it straighten my arm (feels like someone's sticking a line of pins from my wrist to the inside of my elbow) - I believe it's just the veins being irritated by the drugs, but does anyone else get this? And does anyone know what helps to relieve it? Thanks so much xx

[sugar8]

Hi Jeremiah29

How are you feeling 9 days on? Even If you feel better today try not to do much. i went for a short walk on day 9 and my body went into shock. Rapid pulse, dizzyness, and diaorhoea so the next day I rested in bed all day and only mobilized around the house. I feel so well today. My taste is nearly returned, my unwell flu like symptoms have gone and my nerve endings sensations are returning. Be careful with hot things. ihad to get my hubby to test for me as I couldn't sense the level of heat on containers or food. Hope you didn't get these SEs and I really do hope you are feeling much better now.

Am I right in thinking that you will not be given Herceptin next cycle?

[sugar8]

Hi Jeremiah29

How are you feeling 9 days on? Even If you feel better today try not to do much. i went for a short walk on day 9 and my body went into shock. Rapid pulse, dizzyness, and diaorhoea so the next day I rested in bed all day and only mobilized around the house. I feel so well today. My taste is nearly returned, my unwell flu like symptoms have gone and my nerve endings sensations are returning. Be careful with hot things. ihad to get my hubby to test for me as I couldn't sense the level of heat on containers or food. Hope you didn't get these SEs and I really do hope you are feeling much better now.

Am I right in thinking that you will not be given Herceptin next cycle?

[Roxie65]

Hi Cas

Just thought I would mention my friend had the same chemo as you and finished 14th Feb. She is now having Herceptin and if it helps she reckons its a walk in the park compared to the chemo so fingers crossed will be for you too. xxx

[Cas164]

Hi All,

The hair loss thing is pretty strange isn't it! I think it very much depends on type of chemo, dosage and your own hair follicles. I was considering chopping mine all off and my hairdresser bless her persuaded me to stick with my shorter style. As to date 2 Fec s later, I'm doing the comb over on top but still have enough to wear a baseball cap when walking the dog and being out and about. However, I am being realistic and am prepared to change my headgear when I need to.

Just gearing up for fec 3 next Wednesday and looking forward to celebrating with you Roxie being halfway through this stage :-)))

Not sure what to expect though when I get on to the 'T ' bit! I know SE will be different 😞 I also know I will be having herceptin too. And joy I will be having that every 3 weeks for the next year!

Hey ho it's a long journey!

Catch up with you all soon, enjoy the sunshine while it lasts.

Casx

[Roxie65]

Hi Everyone

I had my 3rd FEC yesterday so now halfway through.  I dont want to tempt fate but am now on medication for sickness 3 types plus also in my steriod, constipation and heartburn and this is the first chemo where apart from up all night hot and dry mouth with a slight headache (mind everyone was up due to severe storm!) my side effects have not started yet.  They normally start within the first few hours of chemo for me hope I dont live to regret posting this later!

As regard hair loss I cut my ponytail off week two of the first FEC as so much was falling out.  I have hardly any left at the top and sides but still have the length of a fairly thin fuzzy layer at the back.  Keep thinking of shaving it but when I walk the dog I wear a turban type hat and my own hair peaks out and people assume I still have my hair which I quite like, little do they know they can see most of it lol.

Apparently your hair starts growing back week 3 ready to be lost by the next chemo which is why there is some stubble, was hoping if I went bald it would at least be smooth!!!

Hope everyone is doing well and back on track now for your next chemo's and having minimal side effects!!

Love and hugs to you all xxx

[polar_1]

I had my hair shaved to a No 1 but that night lots of the little bits came out on the pillow and the pillow looked like a door mat next day so I then shaved the rest of it off to have a totally bald head. Almost 2 weeks later my head is not smooth to the touch but has a slight stubble feel to it. Hope that information is helpful.

Regarding injections I live in the NW and my hospital give me an injection to take home to inject 24 hours after the chemo and it is to help with the white blood cells I think.

[mummy2dolly]

Re hair, those of you who have lost it, have you lost all of it? When mine started falling out I went and got a No2 all over, most of that then fell out but I have still got quite a considerable amount of fluffy stubble. This has bemused me somewhat, I was expecting a proper shiny bald head, I feel a bit, I don't know, cheated! So when you see a completely bald chemo head, has all the hair fallen out or has it been shaved? I'm wondering if I should just go and get my fluff shaved off.....