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April 2018 Chemo Starters

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Re: April 2018 Chemo Starters

Michelle I was sick today. I think it catches up with you when you stop maybe. The saltiness is better but still got a bad taste. I may call the chemo hotline again as they said to let them know if not getting better. Not been sick before all through treatment. Have taken anti sickness medication. x
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Re: April 2018 Chemo Starters

Gosh Christine 30 sessions does seem a lot and it must have been so tough going through all of this and having a 4 year old. I did buy some aloe Vera but everyone seemed to be saying to use emollient or diprabase, which is what I have used. My skin is prickly and I’m trying hard not to touch and have switched to wearing a vest top under my clothes instead of a bra. Not long to go now. X
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Re: April 2018 Chemo Starters

Hi Michelle. You must be counting it down to the end now.  My experience was nearly 20 years ago now and i was only 34 so coped with radiotherapy pretty well. I am sure technology has changed over the years and the process improved. I had skin care advice at the hospital before i started and was reviewed during treatment. The advise i had was to apply Aloe Vera but it had to be the 100% pure variety. I used it all the way through and was lucky not to have any skin problems at all. From what i have seen on here that appears to be unusual in the present day. May be it was a lower dose then as i had 30 treatments and now it has been reduced significantly. I worked while going through treatment and had appointments around 4.30 in the afternoon so i could then get back to pick my then 4 year old up from nursery, so I don't think the tiredness was that significant or I have forgotten that bit. Anyway that was a long time ago so things must have changed now.

 

All the best and I hope your skin doesn't get too uncomfortable.

 

xxx 

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Re: April 2018 Chemo Starters

Thanks Fiona and Dorabel
I am almost finished with rads now, 17/20. My skin started to get sore after about the 14th session and has got a little worse each day, I was wondering if the skin gets worse afterwards because it is sore and prickly now but I can cope with it but I wouldn’t like it to get much worse. Hopefully I will turn the corner on tiredness at the beginning of December and can enjoy Christmas. I really haven’t enjoyed rads at all, going in every day has made me think about the enormity of it all and had me feeling like a patient again.
Roll on Wednesday which is my last session!
Hope every elsenis good. X
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Re: April 2018 Chemo Starters

Hi Michelle

I had my last radiotherapy towards the end of September and was quite tired for a couple of weeks afterwards but, compared with the tiredness of chemo, this was nowhere near as bad.  I think, though, that there is a lot of individual variation.  The area treated is still visibly affected and, for about three weeks my nipple was sore.  This soreness has gone now.

I hope it all goes well for you when your radiotherapy starts. 

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Re: April 2018 Chemo Starters

Hi Michelle. I was also told that it was cumulative with the peak being 10days after your last session which was pretty much the case for me. I was really lucky with my skin though I was fastidious with moisturising with double base 3 times a day but My skin was tender though throughout and for a few weeks after.
I'd say I felt the effects for up to 4 weeks after I finished.
How are you getting on with it? X
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Re: April 2018 Chemo Starters

A quick question for those that have done radiotherapy already. I know they say that it is cumulative didnyou notice that you felt more tired after it finished? If so how long did that last? Also did your skin continue to feel worse or did that start to get better once you finished?
Thanks
Michelle x
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Re: April 2018 Chemo Starters

That’s a great way to look at it!
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Re: April 2018 Chemo Starters

I was 8/8 oestrogen & advised to be on exemestane for at least 10 years, which encourages me to think that maybe I’m expected to survive for quite a while.

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Re: April 2018 Chemo Starters

Yes that is the test Fiona, how oestrogen recrptive the cancer is. I think that 3/8 is oestrogen -ve so 4/8 is weakly positive but onc still thinks it is worth giving it a go. Ironically I’m not having flushes at the moment which is a first for a couple of years! Here’s hoping for as few a SE’s as poss for us all! X
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Re: April 2018 Chemo Starters

Ah that makes sense now Christine, thanks.
I was 8/8 oestrogen and 7/8 progesterone receptor hence their strong insistence for me too.
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Re: April 2018 Chemo Starters

I didnt know what people were talking about with regard to oestrogen either until i saw the header on my oncologists letter saying ER7. I assume this is the number as i need letrozole and zoladex which oncologist insists on. I need to wait until my second zoladex before i start letrozole but again it has side effects of more aches. Just need to hope for the best.

Hope the wait isnt too long Gigi. What a day...
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Re: April 2018 Chemo Starters

Hi Michelle, what was the test that you scored 4/8? Was it based on how oestrogen +ve the cancer is?
I really didn't want to have the tamoxifen but 2 oncologists and my therapist have all said they feel strongly that it's necessary but I didn't see any test results which I think would helpy accept.
I haven't started yet as was waiting for the rheumatologist to see what's going on with my joints but she's now said I can get started... I'm dreading it tbh. Not sure I can take more joint pain!

Gigi.. Ive just seen your message... That's terrible, I hope your partner is OK?

Christine, I lost all my hair and have taken biotin since the day I stopped chemo and I'm delighted to report that my hair is really so much thicker than before. Can't say for certain it's the biotin but I'm not stopping it just yet.

For the neuropathy I'm finding gabapentin helping but lm also still dropping things not really stopping it. I walked 5miles yesterday and today but very Slowly .. Patience is key!! Xx
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Re: April 2018 Chemo Starters

Oh no Gygi that sounds awful, I hope he is sorted quickly and you can get home for a good nights rest. X
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Re: April 2018 Chemo Starters

Ha ha no such luck Michelle. Currently in A and E. Partner cut himself badly at work, been hospital and stitched but bleeding too much, daughter throwing up and dizzy. I'm the well one! Designated driver and the one going to work tomorrow! Roll on the weekend. Was hoping to start Park run Sat as a walk but we will see!
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Re: April 2018 Chemo Starters

Good evening all! I expect you are in bed now Gygi I know I would if I was up that early! I also have a slight bit of neuropathy. My hands are fine I can just feel a slight numbness if I push my thumb to a couple of my finger tips. My toes are worse, although not painful and not stopping me doing anything thank goodness. I’m not getting any aches from herceptin either which I’m pleased about. I am walking everyday still and even got back to running before rads but got a cough still and feeling tired so having a couple of weeks off. How are you getting on with parkrun Gygi?
I had an appt with my onc today to talk about Tamoxifen. My score was only 4/8 so borderline but she thinks it’s worth giving it a go and seeing how I get on with it. I’m not keen on taking something for 5 years but I’m not brave enough not to take it!
Funny a few of you are saying hair in various places is coming back thicker, I think my eyebrows have come bavknlooking slightly better than before or maybe I’m just really pleased to see them and more appreciative now! My hair is pretty thick but because I cold capped I have some long bits and some short spikey bits! I’m having it cut every 6 weeks to get it all to catch up.
I hope it’s rated dry fornyour walk Christine x
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Re: April 2018 Chemo Starters

Good Morning

My neuropathy has been in my feet rather than my hands and each time i have a herceptin injection it becomes more noticable. it does fade over the three weeks between but comes back. The oncologist denies this is a side effect.

 

My hands are effected by the joint pains from herceptin as well as my shoulders and hips. I was adviced to keep moving but have not given any other advise. I also had my first Zoladex injection for 17 years so i am not sure what side effects i will get from that. Yesterday i bought a suppliment of glucosamine, omega 3 and a few vitamins just to see if they help. Willing to try anything to get some proper pain free sleeps. I am trying to get back to the gym but i can't do alot yet. I have an appointment with the plastic surgeon today and have a few questions on movement and gym work after the reconstruction. I haven't gone back to using weights yet at all and am very wary of my arms/chest muscles. I do like doing a few squats and do a good stretch routine at the end.

 

I haven't worn much mascara over the last year but i have got back to using it a few times recently and the lashes are definitely improving. Although i didn't lose all of my hair on my head as i scalp cooled, it is still coming out and is thinner than i would like. Keep trying different shampoos and conditioners to give a bit of volume. Any recommendations would be appreciated. I have tried a non permanent hair colour too which has brightened it up a bit.

 

Well i need to check what tubes are running and if i need to walk the last bit. As long as the rain stays off at that point i don't mind the 25 minute walk from Earls Court. Just need to go the right way.

 

Have a good day.

xxx   

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Re: April 2018 Chemo Starters

It’s already a long day, then, Gigi.  I hope the painkillers have worked on your achy legs.  Things I was told by oncology medics, like “pins and needles” and achy joints”, sound so innocuous but the reality is very hard to bear. The effort involved in simply getting about is exhausting.  I hope your day goes well.

 

Thick eyelashes (not yet very long) are a consolation.  They’ve never been this good.  Hair on top is still only babyfuzz but at least it’s there and growing.  Got to find something to enjoy.

 

I’m grateful for all the posts about neuropathy.  It sounds as though everyone who had the same chemo is still having pins and needles, so I need to be a bit more patient.  I get furious with myself when I keep dropping things.

 

I’ve just had an NHS survey to fill in.  It asks if the long-term effects of treatment were explained to me.  Probably they were but in the horrible fog of hospital visits and treatment regimes most of what was said to me is a blank.

 

Maybe I’ll get an eyelash curler. x

 

 

 

 

 

 

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Re: April 2018 Chemo Starters

Oh and hair growing with a vengeance! Eyelashes lovely but oh no embarrassingly had to trim nostril hair. It was soooooo long. Hush!
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Re: April 2018 Chemo Starters

Hi everyone hope no one is up as early as me. Getting ready for work. Partner starts early this week so up with him. Cup of tea in bed right now in the dark. Fiona and Dorabel I finished chemo on the 16th July and the neuropathy in my fingers is gradually wearing off although yesterday when I read your post I was much more aware of it. I guess I've gotten used to the tingling. I don't think mine is too bad it is in my right more than my left hand and I don't drop stuff as much any more. My problem is my legs. Due to having the port out and letting it heal and then a stinking cold for the last 2 weeks not been swimming yet but hoping that will help my legs. Trying to push myself a bit so back out walking the dog although as he is a very energetic husky it's quite hard. Also did a little bit of gardening (pruning) yesterday (my day off) I work 4 days a week thank goodness! Today I'm feeling it so will take painkillers all day and I've started taking some time release vitamins to help they were recommended on a hr2 site and it is helping. Very very stiff but not excruciating pain like before. It was mentioned on a forum that going back to iv rather than injection might help but with all the blood clot/port complications I'm pretty sure that's not an option so I'm trying to "walk back to fitness" I know Michelle walked a lot through chemo. 1 Doc says it's aftermath of chemo another it's herceptin. It is just exhausting living with such dodgy legs. Yesterday I walked the dog (not far) lucky I have a park next door. Then had to rest a few hours. Then I gardened for 35 mins. Then that was me done in. Got shopping delivered as I can't carry any weight. Felt like everything was taking so long and I'm rubbish. That feeling didn't last too long. Gave myself a" be patient talk and enjoy resting it's part of the process. " This morning my achy legs mean my gardening muscles have been reactivated lol. Everyday a little bit more or the same ....whatever I can handle. Patience....do what I can and enjoy sitting around with the family chilling. I will crawl slowly up to the bus stop and go to work. The journey is my walking to fitness today. Long post alert (should have said that at the start) have a good day everyone. Very wet here. Take care Gigi x