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June 2019 chemo starters

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Member

Re: June 2019 chemo starters

Louise your docs should prescribe anything you need for side effects. 

My doc gave me heart burn tablets and oral thrush tablets and yes Vic, cream for my bum as it was red raw from diarrhea. 

 

I take senokot to combat constipation, then tablets from chemo ward for diarrhoea. 

Very fine line between these symptoms :/

 

Had chemo 7/8 today, so hoping I can manage symptoms again like I did for 6/8 

Member

Re: June 2019 chemo starters

Thanks Alvilajo, didnt realise there was a nurses section - I'll go and look for it

Louise

Member

Re: June 2019 chemo starters

Yes x


@EnglishRose2019 wrote:

I don’t know. But you do have your prescription exemption card don’t you? 😘


 

Member

Re: June 2019 chemo starters

I don’t know. But you do have your prescription exemption card don’t you? 😘

Member

Re: June 2019 chemo starters

Aw bless why dont you ask on the nurses section and see what they advise 😘xx


@louisefpage wrote:

Hi Alvilajo

I had my last session 3 weeks ago. Thought I had got away with the toenail side effect.  They are so tender, am worried nails will fall off.

Louise


 

Member

Re: June 2019 chemo starters

Hi Alvilajo

I had my last session 3 weeks ago. Thought I had got away with the toenail side effect.  They are so tender, am worried nails will fall off.

Louise

Member

Re: June 2019 chemo starters

I’m wondering if they foot the bill hence why reluctant x


@EnglishRose2019 wrote:

They haven’t asked for anything in writing but I do have to make an appointment and then they give me a prescription for whatever I need. They’ve always been really good though. 
sorry you are having a bother with them. Perhaps make an appointment for a few weeks ahead and then cancel if you don’t need it if getting appointments at your surgery is tricky?


 

Member

Re: June 2019 chemo starters

They haven’t asked for anything in writing but I do have to make an appointment and then they give me a prescription for whatever I need. They’ve always been really good though. 
sorry you are having a bother with them. Perhaps make an appointment for a few weeks ahead and then cancel if you don’t need it if getting appointments at your surgery is tricky?

Member

Re: June 2019 chemo starters

Rung my doctor's to ask for a prescription for dry mouth, nurse rung me back saying I need it in writing from oncology. I disagreed as this would take days and oncology have told me doctor's prescribe any thing I need to do with side effects. Rang oncology who told me what to ask for and again told me doctor's are wrong. So rung back and had a moan. Any one else have this trouble. This is why I hate going to my doctor's and have only been once since being diagnosed in Feb. Just hoping when I start hormone therapy they can manage my prescription for that once a month with injection. 

Sorry to moan but fed up feeling crappy and then have a battle for simple things! Xxx

Member

Re: June 2019 chemo starters

Hi Louise, mine are darker but not sore but I was told to wear red or dark nail varnish which I have most of the way through chemo. So it could of helped, how many sessions do u have left xx


@louisefpage wrote:

Hi

Hi

My toe nails have started to go black.  They are now very tender.  I have read that chemo causes this.  Any suggestions please as how to stop this getting worse.  Mant thanks

 

Louise

 


 

Member

Re: June 2019 chemo starters

Hi

Hi

My toe nails have started to go black.  They are now very tender.  I have read that chemo causes this.  Any suggestions please as how to stop this getting worse.  Mant thanks

 

Louise

 

Member

Re: June 2019 chemo starters

Thanks shi, do you know the best saliva replacement gel to get for dry mouth xx


@Shi wrote:

Shares in anosol 👍 it’s a staple and some of those disposable gloves so you can slap it on ❤️Sorry to be matter of fact but during chemo and the piles caused by chemo it was survival of the botty and anosol worked a treat. Hope that helps 💕💕✨✨shi xx


 

Shi Community Champion
Community Champion

Re: June 2019 chemo starters

Shares in anosol 👍 it’s a staple and some of those disposable gloves so you can slap it on ❤️Sorry to be matter of fact but during chemo and the piles caused by chemo it was survival of the botty and anosol worked a treat. Hope that helps 💕💕✨✨shi xx

Member

Re: June 2019 chemo starters

Yup. Try cream or a suppository. And try to drink plenty of water. I found prune juice really helped too 😋

Member

Re: June 2019 chemo starters

Not really lol but it’s a new side effect think it’s piles, don’t want to go docs but may need some cream (sorry) ha


@EnglishRose2019 wrote:

Do you want to go into bum specifics Vic?😬😂

I just know I’ve gone from constipation to diarrhoea which has not helped my bottom at all 😬


 

Member

Re: June 2019 chemo starters

Do you want to go into bum specifics Vic?😬😂

I just know I’ve gone from constipation to diarrhoea which has not helped my bottom at all 😬

Member

Re: June 2019 chemo starters

Thanks chicken at least I won’t be driving xx

bit embarrassing but anyone had sore bum on chemo, I heard it attacks your mouth and bum more. 🙄

Member

Re: June 2019 chemo starters

Hi Vic, I used to commute 50 miles both ways for work, about an hr there and an hr back.

100 miles per day.

You'll do the 80 miles OK, just make sure you nap when you get home.

Remember it'll be for a few wks only and it'll all be well worth it. 

Glad to hear you went out without a covering, not long I bet and it'll be back to being a thick coverage. 

Member

Re: June 2019 chemo starters

I went up to Sainsbury’s with just my stubble, got a few stares lol enjoy your holiday minimad xxxx


@mini mad wrote:

Hi Englishrose 2019,

 

i had 12 paclitaxel and began to lose my hair around the 6/7 treatment.  Didnt lose it completely,  just bald patches with normal hair inbetween,  got hubby to cut close to head.  Eyelashes n eyebrows where the last to go.

 

im now 8 weeks since i had final session n hair is doing pretty good.  Not been brave enough yet to venture out without my scarf but hoping i have a good covering by the time we go to the Canaries end of next month .

eyebrows growing fast,  eyelashes just stubby !!  But its all there growing back..yay !!
good luck with your treatments....tick them off ur calendar.

mini mad xx 💖💖


 

Member

Re: June 2019 chemo starters

Hi Englishrose 2019,

 

i had 12 paclitaxel and began to lose my hair around the 6/7 treatment.  Didnt lose it completely,  just bald patches with normal hair inbetween,  got hubby to cut close to head.  Eyelashes n eyebrows where the last to go.

 

im now 8 weeks since i had final session n hair is doing pretty good.  Not been brave enough yet to venture out without my scarf but hoping i have a good covering by the time we go to the Canaries end of next month .

eyebrows growing fast,  eyelashes just stubby !!  But its all there growing back..yay !!
good luck with your treatments....tick them off ur calendar.

mini mad xx 💖💖

Kip Community Champion
Community Champion

Re: June 2019 chemo starters

Hi,  just wanted to say I'm under 50 too and had mastectomy so only had 15 sessions of rads, I think its all different for everyone... but I certainly don't envy your 40 mile each way trip Avilajo.   But as Shi said, its all doable and you do get to meet the same people every day and that's quite nice as you form a bond.   Unfortunately most of mine where old fellas with prostrate cancer.. but we still had a laugh.  

 

On the eyelashes/eyebrow front... mine fell out last (way after the hair went) and the hair started coming back first but then all of a sudden I was aware I had eyelashes coming and eyebrows.. its weird suddenly they just appear again... within a couple of months after chemo I had a full set again!  Not sure the eyelashes are as long as they once were but they are there and theyre mine!

 

I'm on Tamoxifen for 10 years too... just done 1 year.. menopause was already in full swing due to chemo so not sure what is causing what.  hot flushes and aches and pains but still living my life and doing everything I want.. just maybe a bit slower... buts it all doable.

 

Good luck with those of you still in the chemo lounge...not long to go now and then its onto the next step.

Member

Re: June 2019 chemo starters

My hair fell out massively on first 2 rounds of Paclitaxel but is now growing back, but eyebrows and lashes falling out more! Go figure?

I’ve got another 6 pax to go...

Member

Re: June 2019 chemo starters

Yes and it’s 40 each way so 80 a day 🥴

Member

Re: June 2019 chemo starters

It'll be the 40miles travel that'll tire you Vic.

But won't be for too long. 

 

Member

Re: June 2019 chemo starters

One last thing my hairs growing still on placlitaxel but not my eyebrows xxx

Member

Re: June 2019 chemo starters

Thanks for all answering me and sharing your bits 😘😘😘

Member

Re: June 2019 chemo starters

I’m just concerned about all the side effects, having had anxiety for years I dont want to feel low again xx


@rubythursday wrote:

Yes it’s hormonal therapy. Tiny tablet onceca day xx
@Alvilajo wrote:

Aw ruby, is letrazol hormone therapy? It’s tough nearing the end isn’t it xxxxx


@rubythursday wrote:

Hi Vic,

 

i have done seven seven years on letrozole, it’s much, much easier than chemo - most people find it very doable. Also, if you really struggle with one type there are lots of others to try. Think of it as your insurance policy!

 

feeling your pain on the chemo front, mine was last Wednesday feeling rubbish this week!

 

Ruby xx

@Alvilajo wrote:

Hi, had my radio therapy chat today, felt scared after but coming out of it now. I have to have a bone density scan to measure where bones are at before hormone therapy and breast scan as left side to see if heart can be seen, if so I will need to hold my breath whilst being done. Hormone therapy is what I’m dreading and I’m having four weeks radio therapy last one a booster as under 50. Think I feel worse as feeling crap from chemo last Thursday. Anyone else going on hormone therapy ? X vic x


 


 


 


 

Member

Re: June 2019 chemo starters


Yes it’s hormonal therapy. Tiny tablet onceca day xx
@Alvilajo wrote:

Aw ruby, is letrazol hormone therapy? It’s tough nearing the end isn’t it xxxxx


@rubythursday wrote:

Hi Vic,

 

i have done seven seven years on letrozole, it’s much, much easier than chemo - most people find it very doable. Also, if you really struggle with one type there are lots of others to try. Think of it as your insurance policy!

 

feeling your pain on the chemo front, mine was last Wednesday feeling rubbish this week!

 

Ruby xx

@Alvilajo wrote:

Hi, had my radio therapy chat today, felt scared after but coming out of it now. I have to have a bone density scan to measure where bones are at before hormone therapy and breast scan as left side to see if heart can be seen, if so I will need to hold my breath whilst being done. Hormone therapy is what I’m dreading and I’m having four weeks radio therapy last one a booster as under 50. Think I feel worse as feeling crap from chemo last Thursday. Anyone else going on hormone therapy ? X vic x


 


 


 

Member

Re: June 2019 chemo starters

Hi English rose I too am having the later as can’t have tamoxifen as on sertraline. Let’s hope we get on smoothly with it. We’re a young bunch eh xxx😘

Member

Re: June 2019 chemo starters

Aw ruby, is letrazol hormone therapy? It’s tough nearing the end isn’t it xxxxx


@rubythursday wrote:

Hi Vic,

 

i have done seven seven years on letrozole, it’s much, much easier than chemo - most people find it very doable. Also, if you really struggle with one type there are lots of others to try. Think of it as your insurance policy!

 

feeling your pain on the chemo front, mine was last Wednesday feeling rubbish this week!

 

Ruby xx

@Alvilajo wrote:

Hi, had my radio therapy chat today, felt scared after but coming out of it now. I have to have a bone density scan to measure where bones are at before hormone therapy and breast scan as left side to see if heart can be seen, if so I will need to hold my breath whilst being done. Hormone therapy is what I’m dreading and I’m having four weeks radio therapy last one a booster as under 50. Think I feel worse as feeling crap from chemo last Thursday. Anyone else going on hormone therapy ? X vic x


 


 

Member

Re: June 2019 chemo starters

Hi all

im just back from my meeting with oncologist. I had to miss another Paclitaxel this Monday as neuts too low ☹️ But nice to have a week off!!

So we discussed tamoxifen v Monthly injection plus Anastrozole. I think I’m going to go for the latter... I’m pre menopausal so the latter will bring on menopause within weeks (if not days!) but he felt it more effective. Possibility of having my ovaries removed after 3-6 months so would no longer need injection. 

re rads I thought I had been told I’d have 15+5 but he said as I’ve had a mastectomy I only needed 15. Also under 50 so dont know if that helps Vic?

💕💕💕

 

Member

Re: June 2019 chemo starters

Thanks shi for reassurance, hey chicken hope it goes well too for you, I can’t wait till my last one in 9 days, I’m so done with this now!. I suppose we all get scared from time to time, I tell myself it’s normal but it’s still pants. I’ve got to travel 40 miles each way for r/t for 20 days not looking forward to that 🙄 xx

Member

Re: June 2019 chemo starters

Hi Vic, I've got hormone injections for a yr and then the tablets. 

I dont know much about this as I'm still on chemo. 

Having number 7 of 8 Thursday.

 

Surgery before Christmas, then rads in new Yr. 

 

Had my first counselling sessions today in hospital, was just on the chemo ward in the quiet room. 

I'm not sure how much it'll help, but I'll be going back every fortnight to see how I get along with it. 

 

Hoping chemo no 7 goes as well as no6 did. 

Shi Community Champion
Community Champion

Re: June 2019 chemo starters

Alvilajo ❤️ Rads are a doddle after chemo honest ❤️You’ll soon get into a routine with it, keep drinking lots of water during it did help with fatigue, have a nap when your body tells you to and try and get air to the skin at home if you can, think wafty kaftan top 👍 I did 15 + 5 boosters rads too, I was under 50 too. It gets a bit ground hog day but hope you and the others you are in rads lights with daily become a nice little group ❤️We had lots of 👭👭in our rads lounge and called it the breakfast club because we were all 1st thing in the morning 😘 honest once you get first one out the way, you will be Phah, lemon squeezey ❤️💕💕✨✨shi xx

Member

Re: June 2019 chemo starters


Hi Vic,

 

i have done seven seven years on letrozole, it’s much, much easier than chemo - most people find it very doable. Also, if you really struggle with one type there are lots of others to try. Think of it as your insurance policy!

 

feeling your pain on the chemo front, mine was last Wednesday feeling rubbish this week!

 

Ruby xx

@Alvilajo wrote:

Hi, had my radio therapy chat today, felt scared after but coming out of it now. I have to have a bone density scan to measure where bones are at before hormone therapy and breast scan as left side to see if heart can be seen, if so I will need to hold my breath whilst being done. Hormone therapy is what I’m dreading and I’m having four weeks radio therapy last one a booster as under 50. Think I feel worse as feeling crap from chemo last Thursday. Anyone else going on hormone therapy ? X vic x


 

Member

Re: June 2019 chemo starters

Hi, had my radio therapy chat today, felt scared after but coming out of it now. I have to have a bone density scan to measure where bones are at before hormone therapy and breast scan as left side to see if heart can be seen, if so I will need to hold my breath whilst being done. Hormone therapy is what I’m dreading and I’m having four weeks radio therapy last one a booster as under 50. Think I feel worse as feeling crap from chemo last Thursday. Anyone else going on hormone therapy ? X vic x

Member

Re: June 2019 chemo starters

That is fantastic news🎉🎉🎉🎉🎉. I just had coffee with a friend who has also been told her tumour has gone with the chemo!!!
Enjoy your castle🤗💕💕💕

Member

Re: June 2019 chemo starters

https://stellamccartneycares.org/shop/mastectomy-bra
Free mastectomy bra!!! I’ve just ordered one 💕💕💕

Member

Re: June 2019 chemo starters

Great news Ruby and half way English Rose.. Gotta feel the finish approaching. 

I've two chemos left. 

 

MRI results are in, I've had a near total response. Which the bc nurse said is an excellent response from chemo. 

They know more after surgery but it looks like there's almost nothing left! 

It's been an emotional morning, glad we're away in a castle 🏰 for the weekend as it'll be nice to celebrate 🎉. 

Happy weekend ladies. 

 

Member

Re: June 2019 chemo starters

🎉🎉🎉💃🏼💃🏼💃🏼💪🏻💪🏻💪🏻

 Fantastic news Ruby. You must be so happy that’s over. It sound like you’ve had the worst side effects. I do hope that you recover quickly from them. And sounds like you’re happier with the new oncologist so that’s good. 
I’m suffering from fatigue quite a bit this week which I’m struggling with. It’s not like me to do nothing much. But halfway through Paclitaxel now. Only 6 more to go 🎉

currently watching A Star is Born. How lazy am I???!!!!😱

 take care ladies😘😘😘

Member

Re: June 2019 chemo starters

Hello Ladies,

 

saw oncologist on Tuesday, different to my normal one, much better - have transferred my care to her :-) 

 

she he has stopped my nab paclitaxel as neuropathy, blisters and peeling too bad now to continue. So on Wednesday I had my final Carboplatin. So I am officially done, fully cooked - CT scan for early November to check no wandering nasties and seeing Oncologist early December after my holiday.

 

just got to get through next few weeks now :-)

 

hope you are all ok?

 

Ruby xx

Member

Re: June 2019 chemo starters

You guys are having awful side-effects from Paclitaxel do sending you hugs (if you can feel them!). I’ve been really lucky. 
Im currently at hospital and hooked up to the IV and various drugs going through, but just has some reflexology which is very nice! My bloods were back up to 1.7 after having a week off. I am now on 75% dose. Hopefully no drastic reactions this week. 
Good luck with the weight loss too👊🏻
💕💕💕

Member

Re: June 2019 chemo starters


Paclitaxel does seem to affect skin, I have spots on my scalp as well! My hands are peeling now and the neuropathy is pretty bad, seems to be either completely numb or feels like I have dunked my hands and feet in a bucket of nettles! I think my dose may be lowered, I am weekly so three more to go! I had the weird hearing thing with my first chemo, Carboplatin and paclitaxel. It went after a few days. Ruby x
@Alvilajo wrote:

Hi 😁

Zed51 glad you’ve got through the chemo 😁

ruby ive come up with red spots round the side of my face which seems a bit strange, the placlitaxel does seem to have horrible side effects, I also have a sore mouth and a ulcer on my tongue which is painful, two weeks in-between doesn’t give you enough time to recover really. I’ve got bloods Monday then two more left. Feet and hands not as bad after lowered dose. Also had anyone else noticed a swooshing noise in their ears like a pulse?

I walked round ikea today and was exhausted by the end of it.

chicken I hope your counselling helps, I was passed for some but never heard another thing about it🤔 but I have got 6 free treatments through a charity called harmony, it can be massage reflexology etc, 1st ones in two weeks 🥰

vic xx


 

Member

Re: June 2019 chemo starters

That's all useful for me too Shi. If I have surgery before Christmas I think I'll be having rads in Jan maybe. 

 

I'm off to weight watchers this morning, I've decided enough is enough and I need to watch my weight. I've put on a stone, so whilst I'm on the final two cycles of chemo I'm going to be more careful. 

This round from doxectaxal has been fine, so I'm planning on getting back to the old me again. 

 

I've took pics and measured myself in order to know I'm on track. 

 

Here's to a new start Smiley Happy 

Member

Re: June 2019 chemo starters


@Shi wrote:

Zed for rads see if you are getting 15 + 5 boosters, and ask which bits are getting the rads, it differs for each of us, they can do chest wall and under arm etc they will know what you need and exactly what to do. You might have 3 small dot tattoos done so they can line you up on the machine, not all trusts do this but yours might. During rads I just wore a vest top with no seams from H&M under clothing and a kaftan thing at home to get air to skin. Ask about creams to use and I kept one in fridge at home and one in handbag for slapping on while out and about. Ask about using deodorant during rads too. I still drank lots of water and did have a sleep most afternoons too. Try and get a time slot that works for you too if you can the trust I was with arranged around the same time every day so keep that in mind if you are going on your own and having to park 😘 hope that helps a bit 💕💕✨✨Shi xx


Thanks Shi that is all really helpful. Just good to have an idea before embark on this next bit. Have been so so tired this weekend think cumulative effect of all this stuff. Keep having to concentrate on the fact that it will get better in a week or so! 

Member

Re: June 2019 chemo starters

It's at The London's Institute for Cancer Research.  Doing trials now...

Member

Re: June 2019 chemo starters

Hi ladies,

 

noticed this morning on Apple News that there is new trial for those of us who are TN, 

its something that will follow on after chemo is finished.... called BOS172722.... causes cancer cells to die.. worth a look 😳😳  xx 💖💖

Shi Community Champion
Community Champion

Re: June 2019 chemo starters

Zed for rads see if you are getting 15 + 5 boosters, and ask which bits are getting the rads, it differs for each of us, they can do chest wall and under arm etc they will know what you need and exactly what to do. You might have 3 small dot tattoos done so they can line you up on the machine, not all trusts do this but yours might. During rads I just wore a vest top with no seams from H&M under clothing and a kaftan thing at home to get air to skin. Ask about creams to use and I kept one in fridge at home and one in handbag for slapping on while out and about. Ask about using deodorant during rads too. I still drank lots of water and did have a sleep most afternoons too. Try and get a time slot that works for you too if you can the trust I was with arranged around the same time every day so keep that in mind if you are going on your own and having to park 😘 hope that helps a bit 💕💕✨✨Shi xx

Member

Re: June 2019 chemo starters

Hi 😁

Zed51 glad you’ve got through the chemo 😁

ruby ive come up with red spots round the side of my face which seems a bit strange, the placlitaxel does seem to have horrible side effects, I also have a sore mouth and a ulcer on my tongue which is painful, two weeks in-between doesn’t give you enough time to recover really. I’ve got bloods Monday then two more left. Feet and hands not as bad after lowered dose. Also had anyone else noticed a swooshing noise in their ears like a pulse?

I walked round ikea today and was exhausted by the end of it.

chicken I hope your counselling helps, I was passed for some but never heard another thing about it🤔 but I have got 6 free treatments through a charity called harmony, it can be massage reflexology etc, 1st ones in two weeks 🥰

vic xx

Member

Re: June 2019 chemo starters

You are getting close! I hope it’s good news from the surgeonSmiley Happy

And I’m a great believer in counselling and therapy. It’s good to talk. We’ve all been through a lot. 
take care 🥰