oh I’m so so sorry to hear about your son…. hopefully it will calm a little and he’ll come back, especially if your ex isn’t any help. I can totally understand how’s things have probably got too much for him, like all of a sudden in his head it’s so hard. my teen niece has adhd and is slightly autistic so I get it.
I really hope you’re doing ok!! especially with side effects, hoping they are settling now before you have your next one!!?
OMG obsessed with your wig!! wow!! I can only see your little profile pic but I can’t even tell the difference, you look amazing!!! really suits you and I can’t even tell it’s a wig either!!
I’ve been fine so far on second round, only been a week in so far……. I’ve had some slight diarrhoea this morning, but nothing much……. strangely exactly the same (day 7) as my last one…… so maybe side effects occur on same days?! not sure if I’m making sense, hahaha.
So resting this morning and then going to make sure everything’s secure in the garden before the storm tomorrow, as it looks like quite back winds…… and I don’t fancy my greenhouse flying over to next door, hahaha!!
@arty1 I am sorry to hear about your family. Glad though you saw your mum. I haven’t seen mine for several weeks and really want to get to see her before my next treatment.
You look absolutely amazing though! I love it.
@rfg, this was one of the wigs I bought on Amazon - it is very similar to my normal hair - slightly longer, so I’ve trimmed it! It has made a big difference to how I feel. The other one is similar and from the same company. Made in China, but I think everything seems to be. They are cheap and cheerful but will hopefully last for a couple of months or so. Amazon.co.uk
I hope everyone has a peaceful weekend and that you all feel normal. I’m onto round three next Friday if my bloods are ok, so that will be halfway through. Considering I started on 1 November, it is passing.
I had my 3rd cycle yesterday. So just a week ahead of you. Hope your bloods are ok & you can also get cycle 3 ticked off I felt quite grotty last night but I feel much better today. My veins are very sore they feel bruised. The nurse said they have gone quite hard in places & that massaging might help in between treatment, I am having my chemo through a canular each time, I don’t have a picc Line. Hope you are managing the chemo well. My next appointment was due to be Boxing Day but they have moved it to the day after now because they are short staffed . Good luck with your bloods x
Question of the day lovely people. Is anyone else experiencing tenderness around their tumour sites? I have been told I have a dense mass on the side of my breast and it’s quite tender in that area now. Wondering if that’s the ec chemo doing its job?
Hi everyone! I’ve finally had my first dose of TC yesterday, feeling good so far and wondering when the side effects will hit. I had lots of tips from lovelies on here and in particular intermittent fasting and generally being far to healthy with food seemed to help yesterday.
Cold cap wasn’t too bad, I’m worried they didn’t put it on right!
I wanted to say hello to all the other neurodiverse families on here— I like to call us “neurospicy”. My 11 year old is autistic, and the rest of us undiagnosed but with plenty of traits.
Plenty of steroid-finger shopping here too! Those steroids were great on Thursday, got so much done LOL.
I’m on my second EC cycle and both times now have felt sore in my lumpectomy site around day 7 after chemo. It settled down last time - wondered if it was the chemo or the filgrastim injections
I have cold capped twice - took Paracetamol beforehand - and didn’t find it too bad either. After the first few minutes when it was a bit cold, I didn’t really notice it at all - thought it was just me - no sense, no feeling!
Hope you continue to feel ok. I have a dip on the Tuesday/Wednesday when the steroids are done and then pick up on the Thursday but we are different. Take it easy though. x
Sorry was floored by a migraine the rest of yesterday . I completely forgot about my delightful
Monthly migraines and because I’ve come off HRT I think I got three all at once !
@stevie86 Im really pleased with the wig , it was expensive but worth it x. Ex husband has told me my son doesn’t want to come back and has moved in with his grown up brother… it’s all really upset me but I’ve had to calm down otherwise it won’t help with chemo side effects . Extreme health anxiety is also part of him and I suspect m having chemotherapy is just too much
@rfg did you brave the shave … ? I feel better for doing it as my head was also hurting … I wasn’t prepared though for the spectacular shed from “downstairs “ well that’s a few mins saved in the shower @bluehourd Well done on ticking that first one off … how do you feel today ? X I found side effects kicked in the evening I finished my steroids so chemo day 3 including the day in the chemo chair … it was mainly muscle cramps , heartburn and sore mouth oh and a nice chemo rash
@rfg I can’t comment on the pain I’m afraid as I had a mastectomy prior to chemo but I’m sure ivd heard others say it does happen … I think it’s a good sign .look at it as the chemo obliterating that cancer !
@shelbylou81 I can’t believe you are three down already ! Thank goodness they changed your next infusion date … I think going in on Boxing Day would be the pits ! my next one is Friday 13th …
I have also felt sore/ dull pain in my lumpectomy site strangely a few days after each chemo cycle. I put it down to the chemo going around everywhere but with that tissue still being tender maybe that has something to do with it, perhaps because everything is still repairing post surgery? Strangely though I had a bi-lateral breast reduction & don’t get the soreness or pain in the left side that I’ve noticed??? My cancer diagnosis was in the right breast! It seems a bit of a mystery but at least it seems to be happening to a few of us on here so that’s reassuring !! Xx
Thankyou!! Yes 3 down seems like a milestone too as I’m now 1/2 way through my chemo plan which is 6 rounds In total 3 EC 3 Docetaxyl to go!! I am due to finish beginning of feb if all goes to plan . I have been keeping up to date with your posts. I have 3 children & my eldest son is 22 & also diagnosed with autism & adhd amongst other things like sensory processing etc. my middle child is 19 & he isn’t diagnosed with anything. My youngest is my daughter who is 13 next month & she has just had a SPOA referral refused (great!!! ) she has all the traits of being on the spectrum but being a girl masks it quite well especially at school where she tries so hard to fit in!! My eldest lad seems to be dealing with my diagnosis ok but when I have chemo he tends to go for a few days to his girlfriends parents house 45 mins away from home as he is so scared of me getting poorly from catching any germs off anyone. His girlfriend also pretty much lives with us full time but I think this is their way of coping with what I’m going through as she is also on the spectrum!! I think I’ve found that my middle child has probably found my diagnosis the hardest as he fully understands everything that’s going on where as the eldest & youngest everything is pretty much black & white!!! I’m still here living & breathing so that’s fine if that makes sense!! When I lost my hair they were all really good about it & proceeded to tell me how much it suited me. I’m up at this time of night due to the steroids I believe as it happens each cycle . I’m sure that when your son has had time to process what’s going on with your treatment etc that he might decide that he needs to be back at home in his safe haven with the support network that he is used to. As long as he is safe right now I would let him figure it all out himself & just let him know that you are there if he needs you (which I’m sure you have already) big hugs to you, you are doing amazing with it all xxx
Hi I had my 3rd cycle of EC on Thursday just gone. Each round of chemo I have noticed like dull pain I my right boob where I had the lumpectomy several days after the chemo. I wondered if it was because all the tissues & nerves are still repairing & that’s why we’re having those feelings after chemo!! I did have a bi-lateral breast reduction at the same time as the lumpectomy but don’t feel like I’ve noticed any pain in my left boob, my cancer was diagnosed in the right side. I will see what happens this time round & keep you posted!! At least there seems to be a few of us with the same thing happening xx
@shelbylou81 Oh yes . The black and white thing . I know what you mean . My son doesn’t see the issue as despite having a mastectomy and chemo … he doesn’t feel the need to help anymore as I’m still alive …, he has sensory processing disorder as well … My son was 14 because we got a diagnosis though … never attended secondary school and was educated at home via the hospital education system … it was all exhausting as I had no support from my ex husband …
it’s an interesting life living with ND kids that’s for sure ! Don’t be fobbed off with your daughter … has she had a CAMHS referal ? This is how my son was diagnosed as they refered him to the neuro developmental team although it was nearly a two year wait .
My son was diagnosed by the age of 7 after having Ed psych & paediatrician & speech & lang therapist then clinical psychologist! My daughter is mainly in the hub now she’s at senior school & only attends a couple of mainstream lessons that she can cope with. Seems all these cut backs are now making it difficult to get a diagnosis & they are trying to encourage parents against getting a diagnosis. That’s all well & good for them because like you say without diagnosis there is no support. I emailed the senco & said the referral had been refused & she put back wow I am shocked by that. I put back so what are you going to do about it? Still awaiting a response . I will have to try another avanue as I won’t leave it as that. Shame we have to spend our lives fighting for our children or adults with complex needs x
hiiii…… how are you doing??? my heartburn / acid reflux has been my main side effect so far, as I suffer with it anyway, I think it just gets more aggravated during chemo. I had to call red card after first infusion, they gave me more Lansoprazole…… so I take one every morning, they are helping.
Have you taken them before or have they given you any for you to take during your treatment??
@stevie86
No I haven’t been prescribed anything !! I tried the number but it’s super busy I don’t want to take up time xx I’ll keep on with gaviscon and try again in the morning !!! I have omeprizol in the house but no sure if I’m allowed them !!
Are you pretty much heartburn free now ??? This is making me miserable lol xx
Ermmm it doesn’t disappear completely but it’s not constant and doesn’t keep my awake either. After my first session, I couldn’t even lay down it was that bad…… I still have to sit up a bit to sleep but nothing like it was. I really understand how miserable you must feel, as it was my worst side effect, if I hadn’t got acid reflux then I would have felt 99% fine.
They did tell me I could take antacids or Gaviston (which I’ve never actually tried before).
Hope it eases for you soon!! Yes try in the morning with the red card and they’ll surely prescribe you with something!! Do you normally suffer anyway?
@stevie86 only occasionally !! This is next level !!
My husband does that’s how I could try an omeprozol !! But I’ll try and get a prescription in morning xxx thanks for the help xx
it’s so hard. my teen niece has adhd and is slightly autistic so I get it.
I felt quite grotty last night but I feel much better today. My veins are very sore they feel bruised. The nurse said they have gone quite hard in places & that massaging might help in between treatment, I am having my chemo through a canular each time, I don’t have a picc Line. Hope you are managing the chemo well. My next appointment was due to be Boxing Day but they have moved it to the day after now because they are short staffed 
. Good luck with your bloods 
x
xxx
. I will have to try another avanue as I won’t leave it as that. Shame we have to spend our lives fighting for our children or adults with complex needs x