Hey @cazgib10, you should have a 24/7 helpline to call. Is that who you’re having trouble getting through to?
Also if you’re wanting to relay any info to your oncologist, your BCN will be your first point of contact. This has been working for me so give her a try tomorrow.
@mssteel i wont spk to anyone til weds then i have prechemo weds but thankyou the 24/7 call line no there is no such thing they dont do chemo at the weekend so the phone is in an office not manned
Are you in the UK? If so, you should have been given an alert card with a 24/7 number to call in case of any issues and you can call your BCN any time during their office hours or leave a message outside of them for a call back.
@mssteel i have spoken to someone but basicly they didnt say anything just suggested to put cream on it , im not just taking that its very bad
Can l suggest calling NHS direct for further signposting as your hospital does not offer 24/7 helpline. Your right if it was just a dry skin reaction Ìt would not be on the soles of your feet. I have only had that happen with one drug and it was not fun as it was everywhere.
I recommend making an appointment via their medical secretary to see your oncologist. Some of us do have allergies to some chemotheraphy drugs and your oncologist will know how best to manage such. In my case it needed a change from ducataxel to nab paxitaxel as l kept having adverse reactions to the ducataxel drug carrier. The delayed skin reaction that causes my skin to dry out and excema to flare is managed by a course of predisalone and daily antihistimines with extra prescribed emoillents. It all helps.
Tips that have helped me: keep more hydrated than the recommended 2litres per day. It will help to keep your skin hydrated during chemo.
Use pure cotton bedlinen that can be washed at 60c. Use a liguid none biological detergent and not a biological. If you need to soak in bio do so then use the towel/ hotter sheet wash option with none biological after. None biological liguids leave less irritating residue beside than powders.
Wear cotton next to your skin. If cotton is not right you can try silk unde layers but they cost far more. I buy seam free knickers without latex and cotton covered latex free elasticine from Eczema Clothing. Not cheap not fancy but so glad l did. Avoid wearing synthetic fabrics next to dried out skin as they can irritate. They trap any sweat and dry skin flakes which set off irritations.
Watch out for any lost hair sticking to your skin after a shower, Ìt acts like itching powder. Shower Ìt off with extra cool rinses.
Avoid using soap- try Sanex Zero as an alternative. If you react to that speak with your oncologist about prescription soap substitutes. Avoid perfumed and surfate containing soaps etc.
Try using cooler water to wash with as hot water can further dry out dry skin. Always use an emollient after.
Moisturise your whole body daily. Always moisturise after washing or doing housework
I recommend wearing gloves for house work. ASDA stocks nitrile washing up gloves in larger stores. If like me you love gardening make sure you have good garden gloves. Watch out for latex as very dry skin can develop a sensitivity to that too. Many plants and weeds can set off skin reactions if you have sensitive skin. Consider wearing sleeves to protect skin on your arms from brushing against foliage.
If your skin is being very reactive please let hospital staff know. They will try to use sensitive skin tapes etc for blood tests and chemo. Let them know if anything does begin to irritate before it can get really going.
Before using a suitable sun bloc use your emoillent 30 mins before applying, allow it time to soak in so you have a thin layer between your skin and the sun bloc. Larger boots stock some of the (more expensive) reactive skin sun bloc ranges. Look for none perfumed and high plus factor.
Be a tad cautious with synthetic wigs in the heat, have a back up plan in the form of cotton scarfs and pure cotton lined chemotheraphy sun hats. I tried silk scarves but alas they do need some hair to grip on to.
Hope that helps a little and gives you some ideas.
So yesterday really wasnt fun i spoke to a chemo nurse monday concerning my rash and wether to proceed with chemo on friday as planned , They suggested i go to A&E i was put on iv fluids and antihistamine ? Still no cfeam prescribed , they have also given me steroids to take home , i spent the night in a hospital chair 7pm ywsterday evening til 7am this morning i was absolutley shattered and my rash still hasnt gone but is a lot better
Sorry to hear that, hopefully it improves x
That sucks @cazgib10, A&E visits are rubbish at the best of times but 12 hours is brutal! So great that you were able to get some help though and the rash is improving.
@mssteel Thanks a lot i just need to find out now what they are going to do about the next chemo i dont wanna be having more treatment and the same thing happens
@cazgib10 I had something similar a week after my first Docetaxel and my oncologist reduced the second dose to 50%. It was so much better, I did have side effects but Mich milder and easy to manage. My third cycle is this afternoon and that’s also at 50% as I coped so well with that last time. My final one is in three weeks’ time and she’s contemplating increasing it to 75% depending how I get in this time. But that’s something that we’ll discuss after this one.
I really hope you manage to get something sorted out x
@debs5 i only have 20% reduction would 50% be as effective as its only half the dose?
@cazgib10 To be honest I’ve no idea, it’s something you’d need to discuss with your oncologist.
I had a rash all over my hands and up one arm; my fingers were so swollen that I couldn’t bend them. Also really bad mouth thrush. Couldn’t eat anything and even drinking was a problem. My temp was also high so I was told to go straight to A&E where blood tests showed I was neutropenic (neutrophils were 0.1) and they were concerned about sepsis. Like you, I was on IV antibiotics and kept in for just over a week until everything settled down.
Please don’t think I’m trying to ‘boast’ about how bad my experience was, I’m really not, but thought some background info might make more sense.
My oncologist took the view that her main priority was to prevent me ending up in that situation again even if it meant stopping treatment altogether. So, she suggested a 50% reduction to see how my body reacted to that. As I was fine with the it we’re going with that again this time. I suppose 50% is better than nothing. But, as I said, it’s something to discuss with your oncologist. Our situations could be completely different so what works for me might not be suitable for you.
I really hope you can get something sorted out before your next cycle to help put your mind at rest x
Yikes @cazgib10 , I step away from this group for a couple of days and you’ve got another rollercoaster crisis on your hands. So sorry to hear this.you’re so unlucky! Bet the hot weather isn’t helping, though. Spent most of this week experimenting with ice lolly recipes. Anyway, thinking of you…
@wibbles i managed to email my oncologist now and show her the evidence , apparently others get worse rash than me and mine was bad bless them
Has your oncologist been able to suggest anything that might help you going forward?
(below is an image of a hint of my excema flare following a delayed reaction. My oncologist winced when I showed them all the photos and promised to do something to help)
Above is when it first drove me nuts after the first full go with nab’ because it broke out all over and below is after a week of steroids. truly hope there is an antihistamine or something that will help you. (PS if it happens again keep taking photos to show your oncologist and chemo nurses. My nurses refuse to do anything and call the oncologist directly if they suspect my body is throwing yet another wobbler over a previous chemo. ) Its not been fun so far but they have helped make it all more bearable.
Hello wibbles, I had a rash showed nurses last week had anthimsane gone. Tuesday night rash appeared on arms. Chemo yesterday showed them could be changed bedding and it was hot, I didn’t take anything or put lotion on didn’t want it agitated. The nurses I have our thorough heat rash as went down. I will def remember to take photos as well. Already taking photos for temp reading before cold cap was told paracetamol 30 mins before cap so I take at home only if temp is ok. I got told off the other day forgot to take reading. Take care big hugs xxx
@lil56 whilst we have an increase in heat out there try sleeping on 100% pure cotton bed linen washed in the most sensitive none biological liquid you can find. Wash the linen very frequently as any flakes of dead skin or lost little bits of hair act as irritants to skin that has become sensitive thanks to chemotheraphy. Inaddition chemo can make it harder to cope with heat so do what you can to stay as cool as you can.
Hello lovely ladies - hope you’ve been able to keep cool. I’ve got my third attempt at a picc line insertion coming up tomorrow with the radiology department and I am terrified to say the least. Does anyone have any positive stories about getting a picc line successfully inserted after a few failed attempts? (I’ve had a mix of hitting nerves and veins not playing ball). Part of me wants to ask for sedation this time but the other part of me doesn’t want to relinquish all control as the nerve pain has been a huge problem for me and is still affecting my fingers. I do feel like I’m spiralling about this so sorry to dump it in here.
@ wibbles spoke to an oncologist today and they have postponed treatment this week and are looking into the rash and how they are going to proceed further , i think it will just be a drip with antihistamines personaly . I did say i was concerned about getting a reaction a second time and he said i was right to be concerned about it , they are going to let me know what they are going to do , i have picked up some emolient from the chemist yesterday which seems to be helping
