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January chemo starters ?

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Re: January chemo starters ?

Paloma that’s wonderful news you’ve raised so much 👍👍👍well done you. Just a heads up some of my Oct gang are thinking of doing the walk through the night in London next year, Reeboot did it this year (she’s hard) so we thought let’s do it as a gang, so if any of you fancy it too, let me know and we’ll try and co-ordinate a big 🤪🤪🤪gang of us, warning us Oct 🤪🤪🤪could break out into 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻At any point on it 😂🤣😂🤣😂Hope everyone’s doing ok and hair, brows and lashes coming back ok for everyone 😘😘💕💕shi xx
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Re: January chemo starters ?

Hi Fel, glad you are doing ok xx Hi Shi, how are you doing yourself lovely? You are always looking after us xx I have been busy organizing my afternoon tea for Breast Cancer Care. It took place last Sunday and I was really happy to raise over £ 1000 ! Still waiting for a couple of people's donations to come in and then will be sending cheque in 😀
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Re: January chemo starters ?

Fel ❤️❤️Glad you are ok beautiful 😘😘aliand, me and the Oct girls are sending you a 🥊🥊🥊🥊for your oh, worked for some of their oh’s when they needed things pointing out when they had head in sand ostrich moments💕💕shi xx
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Re: January chemo starters ?

I’m doing great. Day 9 post surgery now and I’m busy up and about doing probably too much but don’t have mich choice. It’s been Francis last week in this job and he’s hardly been here. I came out Monday and he went to badminton that night. We’d/thur nights he had leaving do’s with different people. He is just blind to looking after me it’s not that he doesn’t care, he just doesn’t think. It was my youngest birthday yesterday so we took 5 boys go karting. Francis wanted to take my daughter and niece till I pointed out I can’t drive yet so we can’t get them there !
We got back and Harrys godparents arrived with a present so he got himself and the chap a beer and went and sat in the garden for a chat while I sorted out the food with our daughter. That’s just typical of him.
So I’ve not done housework but I have to put washing on otherwise I’d have no clean knickers, I have to cook or supervise it at least. I have to get in the taxi to take a child to an activity. Otherwise none of it would happen.
But I’m five getting quite straight now. Wish I could get in a better position in bed though, it’s so hard to sleep. Taking very few painkillers because I don’t often need them. Maybe all the activity is good for me.
Don’t think I could swim just yet not quite that flexible. So I’ll sit it the hot tub here and watch the beach activities xxx
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Re: January chemo starters ?

Hi Shi and everyone else,

 

I'm ok, enjoying being at work on account of the air con! Still waiting for rads to start, Tuesday is my first session.  

 

All the best xx

 

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Re: January chemo starters ?

Thanks Fel, the first week done so should feel better over the weekend, looking forward to that! X
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Re: January chemo starters ?

Hi Shi, I am fine have been doing a lot of sitting in the garden reading.  My son is staying with us at the moment while working on his house so he's keeping me busy.

Well done Michelle for finishing your chemo, Ailand for completing your breast surgery and Shocked for sorting out your problems re long haul flight.

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Re: January chemo starters ?

Hi ladies, how’s everyone doing? 😘😘fel, you ok darling?❤️❤️💕💕shi xx
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Re: January chemo starters ?

Thanks Shocked and pleased you got the answer re Tamoxifen. Like you say you can’t be the only one I can’t believe it has been that complicated!
I am pleased you are home and feeling ok Aliand
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Re: January chemo starters ?

Get yourself a good box set to watch Aliand and chill - the housework will definitely wait until you are up to it!!

Well the nurse has now called back she has kindly spoken to another Onc for me and they want me to have an anticoagulant before I go and when I return so I can continue with the tamoxifen. Glad I challenged the original advice now 😮

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Re: January chemo starters ?

Shocked, what a pain. Keep chipping away though. As you say I’m sure you are not the only one.


I’m home after my mastectomy and reconstruction and doing really well. Got more movement than I thought I would have. Just need to work on resting !!
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Re: January chemo starters ?

So I thought I'd be able to update you on the Tamoxifen and long haul flying thing yesterday but no luck. Its really starting to stress me out now as well. The breast care nurses at my hospital are saying I need to stop and start every time I take a flight they even tried to tell me this morning that this is a standard approach by all hospitals (I've told them I know that this is not the case) - so I still have no solution, surely I should be taking it regularly for it to work :S They are now escalating my query to more senior staff member as I have said its really concerning that I will be consistently stopping and starting the treatment which is playing havoc with my hormones anyway.

 

I've tried to get in touch with my Onc at the hospital where I had chemp but hes still on leave for another week, his secretary seemed surprised that I had been asked to stop by the other hospital so she is going to try and speak to a nurse - the joys of care being split across 2 different hospitals 

 

I can't be the only woman in the world that flies regularly and uses tamoxifen 😞

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Re: January chemo starters ?

Michelle - great news you've had your last chemo - you've been so positive throughout!!

 

 

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Re: January chemo starters ?

Thanks Amy and good luck to you. I hope the tablets get your heart back to normal and the rest of the course goes smoothly for you xx
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Re: January chemo starters ?

I'm not sure Michelle.  I've been prescribed some tablets for my heart and have an ECG booked for end of Aug so I'm guessing I carry on with the tablets till then and if the ECG shows my heart is back to normal then they'll put me back on it.  I haven't a clue what happens if it doesn't go back to normal or if I go back on the Herceptin and it happens again, cross that bridge when I get to it I suppose.  Good luck with getting back into running 👍

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Re: January chemo starters ?

Thanks Shi and Paloma

That’s interesting to know Amy. I have walked 3/4 miles most days through chemo and aim to go back to running in 2 weeks. I’m looking forward to it but not expecting to go far! I also hope to run about 3 times a week, obviously I’ll have to stop when I have surgery!
I had read you had to pause herceptin. How long will you have to wait for? Do they do anything or is it simply a case of waiting until your heart returns to normal? I hope you can return soon, as yes it does seem like a good drug to be on for us! X
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Re: January chemo starters ?

Marvelous news Michelle! You've done amazingly well ! x

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Re: January chemo starters ?

Hi Michelle, I try to go running about 3 times a week as well as walking too.  Thankfully the neuropathy didn't stop me, felt a bit weird at first but now I only really notice it at night.  I've already had surgery but start rads at the end of this month.  I'm also having Herceptin but it's on hold at the mo due to it affecting my heart, hopefully not for too long tho as it's meant to be a really good drug for our kind of cancer

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Re: January chemo starters ?

Ask away when you are ready Michelle ❤️❤️We will all help 👭👭👭👍👍👍😘😘😘💕💕shi xx
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Re: January chemo starters ?

Thanks so much everyone! You’ve always been a great support to me, it’s been so handy to dip in here and see what happens in the various stages of chemo, very reassuring.
Amy I remember reading you’d been for a run a little while ago, arebyou a regular runner? Have you been able to keep it up or has your neuropathy prevented it? It’s also surprising to hear how long the tiredness lasts and the taste buds are affected for. But better to be prepared.
Thanks for the offer of tips Shi I will definitely need a list of what I’ll need pre/post op especially in the underwear dept, it seems like so much to take in. I suppose now I’m done with chemo I can focus on surgery and get my act together. Same with rads when i get to that!

Thanks again to all of you, and it’s so good that you all seem to be doing well, even with the bumps in the road x
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Re: January chemo starters ?

Oh yes finishingchemo is a huge step, we’ll done Michelle. Xx
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Re: January chemo starters ?

👏👏👏👏🛎🛎🛎🛎🛎🎉🎉🎉🎊🎊🎊🎉🎉🎉🎉💃🏻💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻😁😁😁😁😁🤪🤪🤪🤪🤪👍👍👍👍brilliant news Michelle, you’ve 🤸‍♀️🤸‍♀️🤸‍♀️🤸‍♀️Chemo. 😘😘😘if you need 👭👭tips for op i.e what things you might need if you’ve not already seen them in a he threads please just post and for any 😎😎🥓🥓rads tips too, but for now celebrate 😁😁😁finishing chemo amazing lady 💕💕💕shi xx
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Re: January chemo starters ?

That is awesome Michelle! Congratulations on finishing chemo 😁👍
It will take a bit of time to get over it completely so bear that in mind. I am 2 months post chemo and the neuropathy has gone from my fingers but still have some in my toes and I'm still getting bouts of nausea and off taste but it's all getting better with time 😊
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Re: January chemo starters ?

Thanks Dealdoh, It’s so good to know there is light at the end of the tunnel. I think I have been very lucky so far with chemo and not suffered as much as some, although I still have this one to get through and chemo can never be described as easy! But you are right I just need to get through the next 10 days to overcome the west of it! I can’t wait!!
I have surgery next and then radiotherapy and 1 year of Herceptin. So still a fair bit to do but feel better having got the chemo out of the way.
Onwards and upwards, glad you are doing well xx
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Re: January chemo starters ?

Yayyyy Michelle 🎉🎉🎉🎈🎊🎊🎈🎈🎊.  You must be so pleased and you know that once you are over the next week or so, the worst is over.    It’s three months today since my last chemo and I feel more and more like my old self.  Hair coming back (using Lush stuff and Jamaican black castor oil), strength returning, appetite back to normal.  Still a bit of pins and needles in my feet and my nails are wrecked but otherwise all good.  Are you due to have radiotherapy? 

 

 

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Re: January chemo starters ?

Aliand - glad all is going in the right direction after your mastectomy, it must feel good to be out of bed and so soon.
I had my last chemo today, YAY! Looking forward to getting the next 10 days over and done with and ticking everything off for a last time. I cold capped and kept a lot of hair but do have a few bald patches. However I’ve noticed that there is some regrow already. I was given a recipe for hair growth at a lymphoedema course I went on by a lady who lost all her hair, finished chemo in May and had a good head of hair. It was a spoonful of black caster oil, olive oil and coconut oil. I’m going to wait until mine stops shedding then give it a go!
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Re: January chemo starters ?

Aliand❤️❤️❤️❤️👍👍👍👍well done beautiful 😘😘😘fell darling hope you are ok, have you tried the lush shampoo new red dot on your hair and try rubber by Jamaican black castor oil on you hair for a bit before easing it, it’ll Help with hair regrow this 😘😘💕💕shi xx
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Re: January chemo starters ?

Fantastic Aliand! xx

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Re: January chemo starters ?

What a minefield ! You want to get it right though.

Sitting out of bed post mastectomy. It’s all about recovery now.
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Re: January chemo starters ?

typically my Onc is on annual leave and my usual nurse is as well until Monday so I’m just going to keep taking it until Monday. 

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Re: January chemo starters ?

That’s a good considered response Shocked, so I guess you will be talking to oncologist again?

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Re: January chemo starters ?

Got this resopnse from the lovely nurses on here about flying .....

 

There is no agreed guidance about the need to stop Tamoxifen before a long haul flight.   We know that tamoxifen can increase the risk of developing blood clots. People taking tamoxifen might need to take extra precautions to reduce the risk of this developing over and above the general advice given to travellers.  But the advice doctors give their patients seems to vary as you found from looking at the forum.

 

It’s not clear if having a short break from Tamoxifen is unsafe but oncologists do sometimes advise this for people having troublesome side effects to see if things improve.  There is no reliable evidence to indicate if this is harmful.  A study is currently underway to look at the safety of women interrupting hormone treatment for two years to try to get pregnant but it may be ten years or more before this reports.

 

As you say you are due to have four long haul flights over the next nine months so it’s understandable that you have concerns.  As your situation is unusual, it would be best to contact your oncologist to discuss this further.  This would also give you an opportunity to understand why they have adopted this specific recommendation at your unit.

 

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Re: January chemo starters ?

Fel - its the DVT risk just my hospitals policy it seems.

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Re: January chemo starters ?

Yes good luck for tmw Aliand - me and hairy fingers are sure that all will go well.  Enjoy your well deserved sleep. Xx zzzzz

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Re: January chemo starters ?

I hope everything goes well with your mastectomy Aliand x
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Re: January chemo starters ?

Hope all goes well with your op Ailand.  I felt good after both of my ops modern day anaesthetics are certainly so much better than they used to be.

Your holiday looks wonderful Shocked, why do they want you to stop your medication before your flight?

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Re: January chemo starters ?

Dealdoh I had to read that twice - really well I’ll look forward to that then 🤨 and here’s me worried about my beard 😀

Ali - you really are superwoman or are you using it as distraction organising everything??

Good luck with the Op it’ll soon be over and enjoy the sleep - it’s was the best sleep I’d had in ages when I had my anaesthetic xx I’ve been up since 3 - never seem to be able to get a full night.

Fel - glad your hair has come through it gives me some hope. Taste problems must be getting to you I’m ok apart from Chilli and disappointingly Champagne - the bubbles still hurt my tongue - I will persist with that though 😂

We are off to the gulf coast in Florida next month but I’m still in 2 minds about stopping the tamoxifen.
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Re: January chemo starters ?

My fingers have gone hairy!!!

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Re: January chemo starters ?

Hey Fel don’t worry about the downy hair I remember Shi saying a few of them had it and it goes. So don’t wry you won’t be enlisting with the greatest showman as a bearded lacy !

I’m still up ironing trying to organise everything I can for my family before I go in tomorrow night.
I’m tying myself in k it’s but can’t help it ! I won’t rest easy if it’s not done.
I’ve just not really got the time for a mastectomy. Though the prolonged sleep from the anaesthetic will be wonderful 😂 I do t think I’ve slept more than 3 hours unbroken in months !
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Re: January chemo starters ?

Hi Shocked,

 

I am doing okay.  Spent last 2 weeks watching tennis.  My hair is all back but still really short so still wear wig when out and about.  Have also developed downy hair on my face which is something I never had.  Still having taste problems so haven't been out for a celebratory meal as it would be a waste of money.

 

Where are you off to on your long haul flight?

 

 

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Re: January chemo starters ?

Fel - how are you doing lovely lady??

 

I'm stopping the Tamoxifen today for 6 weeks as my clinic advise stopping a month before a long haul flight - scary stuff - it seems its not the advice of every clinic either just to add to my worry. .

 

Hair still very thin on my head (my extra FEC really did eat it all away)- seems to grow out of my chin instead - Whats that about??

 

 

 

 

 

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Re: January chemo starters ?

Yes Dealdoh I’ve been on there. Not asked as I’m sure I’ll get opposing opinions and at the end of the day as you all say it’s aboit what I can live with and without.
Shi, I’d love them to yak photos of me during the operation so I can see what happens. Not asked though they might think I don’t trust them.
8/9 Amy well at least it takes the decision away !
Paloma, won’t get x Ray results for a week. It’s not causing me stress though. They didn’t talk percentages though I’m not a fan of them. If they give you a cure rate of 99% and you are in the 1% that’s all that matters. I think it’s very very low. And it’s anout reoccurance not secondary cancer. And though a reoccurance would need treatment it is still considered curable. I’d need further surgery but if I loose the skin I can’t go backwards to get a better result. It’s now or never. It’s into my cleavage if that helps visually. And it’s more about how I’ll feel naked and sexually.
Bit more thinking and a bit more research by hubby I think.
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Re: January chemo starters ?

That’s a tough decision to make Aliand.  Have you looked at the mastectomy and reconstruction FB page that Rosie mentioned some time back?  Someone on there might have had a similar choice to make but at the end of the day, it’s gonna be what makes you feel most comfortable.  Any news on the outcome of the neck X-ray yet?

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Re: January chemo starters ?

Aliand great news on the nodes😘this will sound mad but I googled a similar operation to the one I was to have so I could see what would be happening while I was under last year and found it helped a lot to see what would be going on and what to expect looks wise after, don’t know if something similar would help you with your decision aliand? But thought I’d suggest it. Amy 😎😎😎🥓🥓rads lounge for you my lovely, it gets a bit ground hog day but as last no as you look after your skin, drink lots of water and pace yourself it’s a breeze compared to Chemo and you’ll 💃🏻🕺💃🏻🕺trough this ❤️❤️❤️Big thanks to you beautiful ladies for jumping onto may plane and serving some cocktail tips to the may girls 👍👍👍 it’s always a big help hearing from others who’ve finished Chemo ❤️❤️❤️Love you all 💕💕shi xx
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Re: January chemo starters ?

That is a good result Aliand, mine was 8/9 😮

In regards to your decision about surgery, that is yours to make, but personally I wouldn't give a toss what my boobs look like if it meant I was less likely to have to do this again! But I'm not that keen on boobs anyway, I'd quite happily do away with mine and enjoy never wearing a bra again...my partner wouldn't be so keen tho 😂

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Re: January chemo starters ?

No jacuzzis - really😟
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Re: January chemo starters ?

Also, I heard saunas and Jacuzzis not good too, as can increase risk of lymphodena xx
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Re: January chemo starters ?

Aliand, that's a tough one. Did they tell you what the 'slightly ' was in terms of percentages? Hope the x-ray has shed some light on your pins and needles.

Good idea Shi, I will pop over to May ladies xx
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Re: January chemo starters ?

Oh and I still have so little hair I’ve had to buy another of my favourite wigs as I’ve worn it out 🙂
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Re: January chemo starters ?

Aliand - the node news is good I only had 2 taken and 1 was positive but still didn’t have a full clearance.

Decisions we have to make ourselves are hard it’s easier when someone says tells you what to do so don’t envy you at all. My surgeon kind of gave me the options then steered me in a certain direction (still leaving me to the final decision) is yours kind of doing a similar thing?