October 2016 starters

[Angywd]

Hi everyone

Snail888 I agree with Sue,  think you should call your chemo unit as soon as possible.

Karen & jo, thank you so much.  Like we all say, this forum is literally a lifeline.  Had a complete meltdown last night, cried for about 3 hours.  Thinks it's the thought of being so ill again after next chemo tmrw and also the fact that I now cannot hide my illness.  I caught sight of myself with no makeup and no wig and I just look worn out and about 10 years older.  I see it every day so not sure why it upset me so much last night....😰

I notice I'm leaving my wig on later and later in the evening, I always used to whip it off around teatime.  I'm carrying on with the cold cap but my remaining hair is very very wispy and I've given up trying to make something out of it!!  Then I tell myself to stop being so shallow and at least I'm still here!   It was also my sons 17th Birthday yesterday so had a full on day, saw oncologist in the morning then it was full on family and then out for a meal and presenting him with my old car which has had a full make over for him.  Had to keep myself smiling and strong for him.  

Chemo and herceptin tmrw.....joy!

Thinking of you all and sending big hugs

Angie

xxx

[Truey]

Hi,

l would call your chemo team as it doesn't sound like anything I've seen anyone mention on here. Deep muscle pain and redness in a specific area can sometimes indicate a DVT according to my chemo leaflet. It is almost certainly something and nothing but better safe than sorry!,

Sue x

[Snail888]

Funny day today day out. Had plenty for energy managed a 2km walk to shops did some baking but had a nagging pain in my chemo arm bicep. Feels deep in the muscle.
I'm the last hour I've noticed a red patch on my arm centred where the pain has been all day. Like someone has been poking it.
Anyone had anything like this?

[7oanne]

Hi everyone 

I'm back from round 5 T chemo nurses were soo lovely and put my mind at rest,and hubby deserves a gold medal for putting up with me and the emotional roller coasters I've been on the past few days. I managed it hurray 😀😀🎉didn't think I could go through it again this morning, the only horrid bit was when they administered the steroids (I don't think I get on with them face flushed straight away and felt so fidgety and edges like I just wanted to get up and go ) but I put a relax app on and slowly calmed down, think that was the worst bit (so far).

Just got to sit and wait and see what SEs I get this time( hopefully not many or at least not as bad as before)

Thanks for all your support it really does help don't know what I would of done without you all 😘

To all thoughs due to have chemo soon good luck thinking of you 

And thoughs who are going through SEs big hug

lots of love (I'm still standing ) Jo 😘

[miss.mc]

Hi Angwyd,
Please don't worry too much about the surgery - easier said than done I know! if you have got through the months of chemo, you will cope with the mx. I had surgery 1st. Originally diagnosed with a smallish lump (15 - 20mm) with no indication of lymph node involvement - which in theory could have been dealt with by lumpectomy & adjuvant therapy. I opted for mastectomy instead; (probably an unusual choice I realise, but mum had bc twice, I was desperate to avoid radiotherapy & I wanted to feel sure it was gone). I had mx & immediate DIEP reconstruction (from tummy fat) - should have been a 4-6 hour op, but in my case was 9 hours (due to stomach hernia no one knew I had)! As it turns out, lump was just short of 5cm & some node involvement so maybe just as well that I opted for mx. I am now having to do the whole chemo thing, followed by radiotherapy as it was close to chest wall & hormones....and at some point further surgery. The stomach hernia prevented surgeon being able to reconstruct as planned, plus I'm guessing that the radiotherapy isn't going to help my new 'booblet'. Despite all that, I am not so worried about the further surgery. Sure you feel pretty sore for some time - makes moving & sleeping awkward & uncomfortable etc. But it sure doesn't go on anywhere near as long as chemo and I don't remember feeling as rotten.
Sorry that all got a bit long winded, but I hope it makes you a little less anxious about the mx.
Good luck to folk who are onto their next chemo round in the next day or so.
big hugs
Karen xxx

[livvy]

Hi all
Sorry so many having issues its so hard sometimes,I often have massive downers where I just cry over the slightest thing and then I start with the overthinking of what the future holds something I need to stop doing!
Well I had second my T today eventually,my oncologist thought it would be a good idea to half my steroids to prevent thrush! Which apparently wasn't a good idea! As
it was my second infusion I was more at risk of a reaction pleased the chemo nurses knew what they were doing they gave me more steroids and sat with me with an injection and piriton incase anything did happen which thankfully didn't! Even though I admit I was terrified it was going too. I'm pleased to say the oncologist was a locum and has now left that's all I've seen and generally a different one each time which doesn't fill me with confidence 😞 I'm hoping the next one is better! Have to say they've not all been bad the last one just didn't have any empathy with side effects, he's attitude was to expect them which I did but a little bit of support and appropriate medication would of made it more bearable! He just told me to contact my g.p if I had any problems which is fine but they usually kick in at the weekend when there closed! So far ive got the red face and really tired! But just hoping its not going to be like last time.
I really hope everyone's side effects get better we all deserve a break.
I also suffer bad headaches in my second week post chemo that I wake up with sometimes during the night that continue for about 5 days and then they've gone strange.
😂 I also might have to invest in tena lol I'm having the same problem! Oh the joys🙈 XXX

[7oanne]

Hi Angywd,

I had my mx first as my lump was six cm I didn't like the thought of waiting, I didn't have immediate recon as that would have delayed the op and was advices to get radio out of the way then I can decide, I have to agree with Truey it was easy compared to chemo plse don't worry the only problems I had were with fluid filling up under my armpit which has happened recently again due to the T apparently so the nurse said. Hope that puts your mind at rest although I know it's still not great it's doable (says the girl who is having a melt down today 🙄) 

lots of love Jo xx

[Angywd]

Thanks Truey for your reply re the mastectomy.  I seem to have a complete block on getting my head around it. I had surgery for what was supposed to be a lumpectomy before the chemo.  I then waited 2 weeks to be told that it was much more widespread within the breast for a lumpectomy and would require mastectomy after chemo.  Think I have a bit of a hang up re my breasts,  I had a reduction about 10 years ago and had always had issues around having larger breasts 😨 It feels a bit like this is my payback for messing with what I had.... my mum also had breast cancer, luckily only needed a lumpectomy.  I now have fears for my daughter and we have been put forward for genetic testing.  Seems I can't get away from the breast issues!

Angie

xxx

[Snail888]

My hospital won't use the picc line for anything except chemo! I thought the benefit was that it could be used for lots of other things things. Including antibiotics. X

[Sus12]

My oncologist insists on them. He said he's seen too many people with damaged veins and problems afterwards and says it's more common than not now. Guess it depends on the view of your oncologist.
I've got one and apart from needing to wear a special PICC line cover I haven't had any issues with having one. I've had my bloods taken through it as well and yesterday at the hospital they could even put the due though it for the CT scan!
Sue F xx

[Snail888]

Thanks Sue. It's only the one that seems to be painful at the moment. I do drink loads of water and keep very very warm before chemo. Fingers crossed xx

[suebond88]

Hi snail888,

i do not have a picc line - my Oncologist doesn't particularly like them due to an increased risk of infection - but my nurses are struggling to find veins to take blood and for the infusion via cannula.  I have to warm my forearm for at least 30 mins, but they still struggle.  Chatted today about it, as my veins are visibly hard, you can see the 'cording' and sometimes it hurts to stretch my arm.  Am going to persevere though as the end is in sight.  I was told that my veins would eventuallly settle down though.  Fingers crossed.  I found that a gentle arm massage and voltoral gel rubbed onto my arm helps...

SueBxxx

[Snail888]

Hi Sue do you have a picc line? I've done 3 fec and 3rd one used the first vein. It aches today but I am hoping to get through 3 more without a picc line if I can. I'm not having t just fec so veins are a bit more at risk xx

[7oanne]

Hi Snail888,

Thanks for your reply, the skin on my heel is still intact (at the mo) but red/purpleish and was swollen but starting to go down now a bit like a deflated ballon (nice) looks like slippers are on the agenda for the foreseeable future.  I did however order some foot cream that OldDawn recommended so I'm going to give that ago.

Hope that your doing well (looks like the tv and me are going to become inseparable might even have to watch C Big Brother )!!!

big hug Jo xx

[suebond88]

Hi everyone,

i too have made made friends with Tena Lady😳   Also, I feel that I have a full bladder but then when I go, there's not as much as I thought.  No burning though.  So weird these side effects, but also I think a sign of getting older!!

had a meeting with my Oncologist this afternoon in preparation for my 5th FEC next week.  Everything ok, and she's not overly concerned by my very low white cell count (0.5), unless I contract  any infection, which up to now I have not (lucky).

so, the light is at the end of the tunnel.....last FEC booked for the 31st.  Just surgery and radio to cope with then....a doddle after Chemo apparently!? 😳😳

hope everyone copes with their T's and that the se's become more manageable.

sueBxxx

[Snail888]

Awww Jo. It's OK to be upset I'm 96% OK then it all hits me in the middle.of night and I end up sobbing into the cat while the oh sleeps.
Is the skin on your heel damaged at all? My ache feels like the bone and is suspect it's arthritis which is why the chemo improves it.
I do hope tomorrow goes OK for you xx

[7oanne]

Hi everyone

I didn't hit refresh so didn't see the other posts after Truey so wasn't being rude. Angywd they said their reducing mine by 20% and said that it won't compromise the treatment also I have lost quite a lot of weight (I think due to stress) so that might have an effect.

hope everyone else is keeping well 

big hugs Jo xxx

[7oanne]

Hi Truey,

Well the oncologist called me in to have a look at my foot and said to go ahead tomorrow.  Head down and brace the storm , he said the skin may come off 😁 And to avoid walking on it ( well even lying down hurt it I've had it raised on a pillow at night ).  Im sure I've got cabin fever as couldn't go out from the beging of first T as 'tax trots' happened the first night. Sorry about the moaning but I broke down in tears earlier today on the chemo ward and to be honest several times at home I'm soooo frightened this time.

Hope your last T runs smoothly and your hands and toes don't suffer too much (at least you know it's the last time you'll feel like this) not that it helps. 

Best set wishes and a big hug Jo😥😘😘

[Sus12]

Lol I've been experiencing that too Sue. Very weird and think it must be due to lack of hair in that area! Can't think of any other reason. I haven't had any loss of sensation ....so far. But bought tena pads just before my FEC as people were saying I might need them. Only problem I've had is the Tax trots as they're called. Day 14 and only just starting to get a little back to normal and not having to plan trips out of the house! I think the T (and maybe the FEC) rubbishes your entire digestive system :(.
Headaches gone thankfully so think it could have been a few days migraine brought on by the T. It will be interesting to see if I get it at the same point after my 2nd T next Thurs. At least I'll be prepared for it this time.
Glad you got sorted Angie and Sue O. Jo hope things get sorted out ok for you too.
Hugs to all.
Sue F xx

[Truey]

Hi Everyone,

Angie, I had my mastectomy first and I can tell you it is a piece of cake compared to chemo, so don't be too apprehensive. I also have radiotherapy after my chemo though. It will be 15 sessions to the chest and 5 more above my clavicle, so I think that accounts for most of February!!

Swampy, no incontinence but I do struggle with the "sprinkler effect". Not sure if this is due to loss of hair in that vicinity but flow is unpredictable to say the least!! Anyone else seen this? 

Hugs,

Sue X

[Snail888]

With regards to bladder might be an infection. Can you get sample to be dipped just in case. Xx

[Angywd]

Hi everyone 

just back from seeing the oncologists registrar and senior chemo nurse.  Both were in agreement that my next dose be reduced by 25% (didn't think to ask exactly what the original dose was d'oh!).and reassured me that in no way does it compromise my treatment.   Just like Snail888 says, it's seems to be a case of fire the big guns at us and see how we cope.....it's worked out by your weight initially.  I do feel relieved, less anxious about chemo this Friday and feeling so so poorly again.  They also said it's very common for them to have to reduce the dose for the 2nd one.  They didn't make me feel feeble for not being able to stand it either.    With 25% less it's still pretty dire and also will have the cummulative effect to add to it...  

Swampy, no bladder issues as yet but it could be saving itself for a late appearance!

Sue O, my next chemo is less than 48hrs and they have today changed the dose so I'm sure you will be fine.  My doc started me on gabapentin to stop the probs with fingers and toes and so far...touch wood..I've had nothing other than twinges.

Sue F hope you manage to find what's causing your headaches, they asked me today if I'd had any bad headaches so I'm thinking it's maybe a rarer side effect?

Jo & missmc stay strong you can do this, but if you have a bad day don't feel like you're losing the battle.   We will have weak days when we have a good cry, but we're women so we then pick ourselves up and get on with it, probably cos we have no choice!! Sometimes it feels like there's no end in sight, I have mastectomy and radiotherapy at the end of chemo too but trying not to think too far ahead.  I think dealing with chemo is enough for anyone. 

bigs hugs

Angie

xxxx

[swampy1901]

On the subject of Peripheral Neuropathy ........ has anyone been suffering with incontinence too? This is a new one for me and kicked in during the last few days of the T1 cycle and since yesterday was T2 -it's even worse now!!  Becoming firm firends with Tena lady now!!

swampy

[Truey]

Hi Jo,

That's frustrating - uncertainty always makes us feel worse!

After everyone's comments about peripheral neuropathy, I did call my chemo unit about my numb toes and reduced feeling in my finger tips. The senior nurse said they will reassess on Monday at my pre- chemo check. Apparently, 48h is enough for them to make a dose reduction if needed and still get the drug from Pharmacy in time for infusion on Wednesday. I do feel better having discussed it and knowing I have done everything I should. Like you, Jo, I guess time will tell what happens with my last T!!

Hope you get sorted out soon.

Sue O X

[7oanne]

Hi everyone 

Just back from my pre chemo blood test and picc flush, and while I was there I showed the chemo nurse my heel and she was a little concerned and said that she will get in touch with the oncologist to see if the chemo will go ahead tomorrow.  Got to ring this afternoon to see 🙄😬😳. Having a bit of a melt down today!

Hugs to all

Jo xx

[miss.mc]

...and Old Dawn. sorry

[Sus12]

Snail that makes sense. Thank you as I didn't really understand dosage! I guess I should have asked!!
Sue F xx

[Snail888]

Angie from what I can tell dosing is done on a basic formula initially assuming you have no underlying conditions they have noticed. Now if we take something good like bmi numbers another standard formula we know some people who are heavy yet lean are classed as obese using bmi.
So the standard formula for chemo can be adjusted to fit the needs of the patient.
We will also break down the chemo differently and the side effects can be a sign of dosage issues - no always.
We are entitled to tailored treatment and it's great your nurse said it needs looking at.
The chemicals are very strong and monitoring over time will of course see effectiveness.
Try not to worry and do ask your doctor these questions. I was worried about my reduction and I'm also compatible concerned I won't make 6 sessions but the doctor says each one is a benefit and lowering the dosage means I can tolerate more.
I hope that helps xx

[Sus12]

Angie what dose of T are you on at the moment? I'm on 200mg Docetaxel currently. I'm having a conversation with the consultant cancer nurse on Fri about se's and dosage.
My doc sent me to the hospital today as the severe headache still continued. They did a head scan and checked me out really well and thankfully no serious issues. They think something ( the Docetaxel?) has triggered severe migraine. In a way I feel a bit stupid but on the other hand after two and a half days of continuous severe headache day and night with no sleep and no ordinary painkillers touching it I was getting a bit concerned :(. Relieved in a way though.
Sue F xx

[miss.mc]

many thanks for your kind words of advice and support snail888 and Angwyd. x

[Angywd]

Hi ladies

Big hugs to everyone who is struggling with side effects or other factors in life which go on no matter what we are going through... 🤗

I'm due my 2nd herceptin and T chemo on Friday and have been getting really stressed about it as the side effects to the first were so awful 😰 I rang and spoke to the head chemo nurse today, explained how bad the side effects were and that I'm dreading the next chemo.  She said she thinks my dose should be reduced and I am now seeing my oncologist tmrw to discuss this.  I'm really worried that this will compromise my treatment even though the nurse said it won't.  Doesn't make sense, if I didn't need such a high dose why would they give it in the first place? I will obviously ask these questions tmrw and come back on here with the response.  Finally having a few days of feeling normal but I can't enjoy them with the next chemo hanging over me...

Jo, yes I too have had heel pain and thought it was just me!! It comes and goes but it's very sore sometimes. 

love and hugs

Angie

[Snail888]

1 lotradine tablet 2 hours after gcsf and pretty much all.axhes and.pains have gone!!

[OldDawn63]

Miss MC - you can't rule out stress as a contributory factor either, with what you are going through at the moment, and you shouldn't feel embarrassed about crying in your situation. I know how it feels to have elderly parents/ in-laws seriously ill in hospital this time of year. I hope you and your dad have plenty of support from friends and other relatives. XXX

[OldDawn63]

Can't help on queasiness and headaches, I'm afraid, as I didn't get them during my T cycles. Re: sore, peeling feet (7oanne, Swampy1901, Snail888 and Truey) I don't think mine were as bad as yours but I did get slightly sore, red toes and some skin peeling after my first infusion of T, Herceptin and Perjeta. I recommend CCS Swedish Formula foot cream (which it sounds like Truey is already using) as it is better for my feet than any other foot cream I have tried, and I am still using it. I also used Defiant Beauty Mild Mint Foot Balm (available from Live Better With - see: https://livebetterwith.com/products/defiant-beauty-mild-mint-foot-balm-50g/ ) when my feet first started to suffer, and it did help to stop the peeling and soften my feet, although it is expensive and doesn't last long (you don't get much in a jar but you can get a multi pack). It is also very greasy (it melts on your fingers!) so you don't need to apply much and you need to rub it in well. Nails are more difficult because I don't know whether the preventative things I did (applying Onicolife drops to finger and toe nails twice a day from the first FEC cycle onwards) worked, or whether I wouldn't have had any problems anyway, I guess I will never know for sure. Onicolife drops are expensive and only available from Live Better With (https://livebetterwith.com/products/onicolife-drops-for-chemo-nails/) but are worth trying if nothing else seems to work. Hope things improve soon, though - applying oil has got to do them some good.

[Snail888]

Miss m c try to give yourself some time. I know own how very very hard that is. X

[miss.mc]

thanks snail88.

[Snail888]

Yes pains in neck and shoulders. Almost like whiplash and definitely injections. I'm going to try taking a lotradine today as the pain in my shoulders and front of ribs was awful. Does feel muscular too but could be referred from somewhere xx

[miss.mc]

Has anyone had shoulder/neck ache with the filgrastim injections? Feels more muscular than boney. Not sure if it's a SE of the jabs or just other stuff going on for me at the moment. Am a bit stressed as also trying to cope with dad in hospital for a week with advanced heart failure & pneumonia. Not having a great time just now & finding it hard not to cry for past couple of days. 😔

[miss.mc]

it doesn't seem possible to drink such vast amounts of fluid and still feel as though you have a dehydration headache does it?!

[Snail888]

Yes miss mc. Massive headache fec round 1 and now I have random taste changes and thirst/ dry mouth. I drink 3 to 4 litres of water plus Decaf herbal teas so can't see I'm dehydrated! I think it's linked to the destruction of the fast growing cells on the tongue thus affecting taste. X

[miss.mc]

hello
I have also had quite a few headaches & dry mouth (although I haven't started T yet - just had 4th EC). On my 1st EC the headache hit me like a sledgehammer during the infusion fusion. it was as though someone flicked a switch and gave me the most monumental hangover imaginable. It wasn't as bad with subsequent cycles, but I still get random headaches. doesn't seem to bear any relation to how much I drink - and I am having plenty of fluids. None quench my thirst tho - leaves my mouth feeling as though it has a horrible greasy coating yet is dry at the same time! Anyone else had that?

[Sus12]

Hi Sue,
It is a lot of help :). Thank you.
I've been the same as you too on waking with a very dry mouth but have been drinking loads too so it doesn't just seem random does it especially as you've had it a second time at a similar time. Going to ask the doc what I can take that's a bit stronger than paracetamol or Ibuprofen.
Sue xx

[Truey]

Hi Sue,

It isn't listed but I too had headaches. On the 1st T cycle I woke with a headache on days 10-15. Unlike yours, they weren't bad and responded to paracetamol which I took after checking my temperature and a large mug of tea. Like you I had no alcohol and kept hydrated but it almost seemed like I was getting dehydrated whilst asleep?! My mouth was VERY dry on waking.

Now in T2, day 14 and woke with a headache today, so it seems a bit of a coincidence if it is just random.

I know it's not much help but at least you know you aren't the only one..!

Sue O X

[Sus12]

Am on day 13 of my first T and have had 2 days of almost constant bad headache. Am seeing my gp today but just wondered if anyone else has experienced this? Ordinary paracetamol etc doesn't touch it :(. Not dehydrated as have been drinking loads (and not alcohol 😄 ). Doesn't seem to list it as a common side effect of Docetaxel.
Snail and Sue O hope things get better for you soon and Jo hope you got to see someone for some advice.
What a New Year eh?!!! The end is in sight though 🙂
Hugs to all.
Sue F xx

[Snail888]

Thank you for the advice. I tool lanzaprosole and slept well. But as soon as I got up and walked about I feel really sick again. But day 5/6 is when some of the drugs are activated and also our red and white cells drop. Feel shoddy so will try to stay in bed. Gcsf injection due in an hour though x

[OldDawn63]

Sharz and Truey - sorry for not responding to your posts before (due to combination of fatigue/ celebrating New Year and 'official' end of chemo). Just wanted to say I agree with Snail888, Sus12 and 7oanne that you should contact the oncologist's secretary today and insist on seeing an oncologist before you have the next T infusion. If you don't get anywhere, ring your BCN and tell her you are worried. From your description it sounds as though you may have peripheral neuropathy, which is unfortunately not an uncommon SE of Taxotere (Docetaxel) and diabetics are more at risk. It is also a potential SE of Herceptin if you are having both. It is usually temporary, but can cause long-term or permanent nerve damage in some people, and there's no cure. See link below for further information: http://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/other-side-effe... Macmillan advise you to tell the oncology department about your symptoms asap, so they can decide whether your treatment plan needs to change to reduce the risk. When I discussed the potential SEs with them before I started the T cycles, my oncologist said that 3 cycles of T is unlikely to be enough to cause permanent nerve damage, but accepted that the T would have to be stopped if I developed severe neuropathy. The irony is, I did not notice any symptoms during my first and second cycles - the crafty b****r waited until the last one to make an appearance, and still hasn't completely gone. I hope the oncologist is right that the problem will eventually go away, but as my chemotherapy has now finished, any damage has already been done (though further damage could be done if Herceptin has contributed to it, because I will be having the injections until the end of October). I hope this helps, and that you manage to get to see someone soon, if only to set your mind at rest.

[Truey]

Hi Jo,

I was warned by the chemo nurse that my feet would probably be affected and to look after the nails, soles and heels. I have been using foot moisturiser (and it seems like tons of every other moisturiser in the world!!) once or twice a day since starting FEC on the last day of September. Apparently, it is really the T which causes most problems though.

My feet were fine until T started but now on the 2nd T my heels hurt. It started around D9 and I bought a professional moisturiser used for diabetics from the pharmacy to use now. They haven't split yet but still feel uncomfortable. It might be worth talking to both the chemo nurse and to pharmacy (the cream I got is just on the shelf with other foot care, non-prescription).

My big toes are also numb which I plan to discuss with my onc team in case the dose needs adjusting - I don't relish permanent neuropathy.......... My toe nails are not discoloured yet though.

On my hands, my finger tips are also a bit numb and fingers feel "bruised" at the tips. I can see changes on my finger nails. I have 3 white lines that correspond to each FEC and now discolouration from the T. It isn't brown but a sort of dark red around where a white half moon might be at the base of some nails.

Final T next week though - hurrah!,,We will all be there soon.

Hugs to all.

Sue X

[Auntyjulie]

Hi snail888 my oncologist advised me to take at least 20mg omeprozol all the way through, and 40mg on my nausea days. The last fec I had they gave me a tablet at treatment time that lasted 5 days and was really very good, could be worth an ask? Good luck hunni, x hugs

[swampy1901]

Hi snail888

On the one off occasions of queasiness I found it enough to just take the dissolvable under the tongue ondanestron. I found it gave the quickest relief from random nausea and then follow it up with the metoclopramide for more longer term relief.

Don't be afraid to take the meds whenever you need them even if you think it's taking a hammer to swipe a gnat. The meds are provided to ease any side effects and make you feel more comfortable so don't suffer unnecessarily. Hope you feel better soon xx