@wjs ahhhh bum!!! Did they talk about adjusting the dose next time? It’s so hard for them to get it all right first time as despite all the research and evidence we are individuals and we have to wait and see how it all affects us. My team did talk about possible injections (on top of the day 2 injection) to boost my counts but they didn’t want to do that after round one as they want to get a base level.
Either way, it’s frustrating and no doubt will happen again (I’m trying to find my inner zen peace in all this!) but glad you got out for lunch - I love a garden centre!!!
Good idea, I’ll do the same. Yes, I’m using the water based solution but only been using for a few days and probably through half of the bottle at least!
I’m glad you said about washing the growth active products out pre chemo, as I hadn’t clocked I needed to do that. Thanks!
With the scalp cooling solution for the 3 days post chemo I didn’t find that matted my hair. But I did end up pouring it over, catching as much as I could in a bowl and pouring again (repeating a few times), as I couldn’t seem to coat my head with one go. I’ve found the smell quite intense from the scalp cooling products, have you found that?
Hi SL255 - only done one round of chemo so far and didn’t particularly notice matting. But then I was back late afternoon, slept for ages and washed it off the next morning (I suppose I reapplied though!) so may not have noticed. Mind you I also cut my long hair fairly short with a view to it being easier to manage as it’s curly and tangles easily. Will note more carefully impact after this week’s session - it was all a bit bewildering the first time!
@ljlj Re smell yes the smell was making me ill so I asked and there is a fragrance free option! Makes a world of difference as was beginning to get sick at all menthol smells as a result! Think these products should only be fragrance free.
Hey @SL255 I get matting too on days 2 and 3 after treatment. No tips sadly as I’m on the same boat! I’ve just been lightly scraping it back into a low bun on those days.
For the first 4 weeks I only rinsed on the evening that I’ve had treatment and then reapplied the powder/water solution - the intrusions said I could rinse or light wash that day.
So my hair was pretty matted for 3 days and then I wash on day 4. I’m having weekly treatments though so our intructions probably differ!
I’ve also just tried the light wash option, as I had round 5 today, but it’s probably the most amount of shedding I’ve had!
The smell is intense! So glad you said there are fragrance free options!
@kcg0610 ahh that’s a lot of time, I bet it takes it out of you!
Had my second dose today … had another reaction although not as severe this time, I think due to extra steroids I was given beforehand… so they are perhaps going to up it again for next week!! I was so tired when I came home and slept now currently wide awake at 3am watching tv I just find the whole experience awful still … I know it’s only my second time and I shouldn’t compare but I look around and everyone seems so serene during their treatments and I’m a nervous wreck! Suppose time will make it easier!
Had the plan back from the medical team as well … so carrying on with the chemo plan but having more frequent scans to check the tumour … so surgery is on hold still for now and I am have my a CT scan on Sunday to check for any spreading else where, which will put my mind at ease!! I am staying positive about that
Hair is still coming out in lumps … so pulling my big girl pants on and asking my sister to come round this weekend to shave it … no point washing it this week
Good links for the wigs @donna_51 thank you! And for those cold capping … keeping everything crossed for you all
On another note … does anyone having any recommendations about tanning?!? I know it’s probably not high on everyone’s lists … but I have become so pale I thought I might give it a go to help me feel a bit better… especially when I do shave! I do tan occasionally but thinking is there is any specific brands anyone can recommend as skin is a little drier and I wasn’t sure if with all the drugs it might react/ go patchy/ orangey more?! I’d rather be like Casper the ghost than Marge from Benidorm x
Hey @charlie22 - really glad you have a solid plan and the extra scans for peace of mind! And that they’re doing the extra scan really soon so you will get reassurance quickly I hope!
On tanning - I got a spray tan before my 5th round. (I’m getting married just after chemo and needed a trial run haha). The nurse did say, had I asked before, they would have told me not to as there are chemicals in the spray and my skin could have reacted in some kind of way. (Mines went on as normal)
Tbh I was fine breaking the rules just this once, I feel a bit more confident than I did before and there are so many rules atm!! Maybe instead of spray there’s some kind of organic/sensitive skin kind you could use? I wonder if those gradual tinted moisturisers are kinder to the skin?
@charlie22 Yes shedding is hard and feel like when I am sleeping it’s come out more on the side I sleep. Weekly treatments might be better so hopefully it slows soon. Despite drinking loads of water for the last few days the shedding is the same and fairly big. Not sure how long after chemo ends will the shedding stop. Think it’s 4-6 weeks so prob will look very sparse by then! Hopefully hair growth active can work a few miracles!
Tan Organic is a name of a tanning brand with no chemicals in them so try and find ones without to do a few trials first. Good luck!
@kcg0610 oh something to really look forward to then … I would have been the same as well breaking the rules and @SL255 thanks for tanning recommendation … I’ll take a look! yeah the shedding is difficult…I brushed my hair this morning and the amount that came out was incredible … it feels so thin now and agin like you it’s all the side I sleep most on, which is also the right side where my tumour is … probably just coincidence but feels odd! So called my sister this morning and she’s coming round at 8.30am Saturday morning to do the big shave I’ve heard rosemary oil is meant to be really good for hair growth and scalp health? X
@charlie22 Best of luck with that am sure it will feel more free after. Yes heard that too re rosemary oil. I have 2 more sessions so will have very little left as still have another 6-8 weeks of shedding to go. I will keep spraying (and praying) re hair growth active as find that very good.
@charlie22 how annoying… hope you’re feeling ok about it a couple of days later!!! Honestly, don’t think we’re all serene … I feel okay (ish) when I go to the hospital but still cry every time as still can’t quite believe this is happening to me. Outside of hospital I am often found screaming in the car and roaring on dog walks and I mean incredible hulk type roars. The dog thinks I’m mad but I need to get out something as this is all so crap!
It’s my birthday today… so technically @donna_52 now! Am meant to be going out to the Murder Trial Live tonight but feeling pretty sorry for myself as this really isn’t the birthday I was planning. Plus have to brave some sort of wig (my pink one maybe?) so a tad nervous about going out in real public later… arrgghhhhhhhhhhh … might have to roar and scream this afternoon!!!
Keep going everyone… this sucks but at least it will end at some point xxxx
@charlie22 Some ladies also swear by castor oil too so have a look at it too!
So my swinging temperatures landed me in hospital on Sunday and was admitted for 2 days as my oncologist wanted to investigate what’s causing it It was honestly so strange as I had no other symptoms apart from a yo yo in temperature. They couldn’t find the source of infection and discharged me once my infection marker went down and bloods looked normal. Luckily my wbc counts were ok throughout so chemo 2 is still going ahead on Monday.
Happy Birthday @donna_51, I hope you can ‘roar out’ all of the emotion and go out later and have the best time. I’ve not heard of Murder Trial Live, you’ll have to tell us what it was like after!
@akioqey glad your temperature is back under control and you still have the go ahead to get another session done and out the way.
@donna_51 Happy Birthday! Hope you manage to enjoy your night out and it can take your mind off things for a bit.
Been feeling a bit rubbish this week with my cancelled round 2 today and also yesterday started to shed a lot more hair. Can tell just above my ears but not anywhere else yet. Not sure if this is normal thinning with the cold cap or a sign it’s not worked - although only had one session so far. Decided to order the wigs off SHEIN I’d been looking at just in case. So was feeling very sorry for myself yesterday. My friend is taking me out this afternoon though to cheer me up.
Sorry to hear you have been in hospital, am I right to think you also had to spend some time there after your first treatment or have I got things confused?
Hope they can work out what’s caused it for you and hopefully stop you going back after your next round-although good it’s going ahead on Monday! I’ve got my 2nd EC on Wednesday, the wait since round 1 seems to have been quite drawn out!
although not as severe this time, I think due to extra steroids I was given beforehand… so they are perhaps going to up it again for next week!! I was so tired when I came home and slept now currently wide awake at 3am watching tv 
and I am have my a CT scan on Sunday to check for any spreading else where, which will put my mind at ease!! I am staying positive about that 
yeah the shedding is difficult…I brushed my hair this morning and the amount that came out was incredible … it feels so thin now and agin like you it’s all the side I sleep most on, which is also the right side where my tumour is … probably just coincidence but feels odd! So called my sister this morning and she’s coming round at 8.30am Saturday morning to do the big shave 
It was honestly so strange as I had no other symptoms apart from a yo yo in temperature. They couldn’t find the source of infection and discharged me once my infection marker went down and bloods looked normal. Luckily my wbc counts were ok throughout so chemo 2 is still going ahead on Monday.