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
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!,
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 😘
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
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!
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...
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
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.
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
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😥😘😘
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?
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.
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!!
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
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
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
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
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.
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
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.
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.
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