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Chemo JAN 2017

Suze123
Member

Re: Chemo JAN 2017

WTP - I too am suffering from lovely hot flushes and spoke to my oncologist about it last week. She said that although chemo 'could' bring on an early menopause she thought it was unlikely. I'm 44 and she said that as the average menopause age is around 51 plus I would be unlikely to go through it yet, even if I'm having chemo. I'm not sure what age you are but she reminded me gently that our bodies are going through a hell of a lot with chemo. As a result, periods stop as your body has other things to deal with! She said flushes are a normal SE and I should return to normal once they wear off. Hope that helps a little. 

 

Nicky - big hugs -  re the moving on course... the standard Moving On course is open to everyone and has been running a while, have a look on the BCC website to find one near you. Alternatively, these courses are also run by Maggie's Centres and local hospices too. Ask your BCN as there will hopefully be one near you. There's detail and resources here: https://www.breastcancercare.org.uk/information-support/support-you/local-support/moving-forward-aft...

 

Blue/Egg/Beedot - on the veins issue. I just had my first physio appointment to help me with the cording and vein damage in my arm from my first FEC (before I had a PICC). She gave me a load of guided exercises to do to release the scarred tissue which involves stretching and breaking down scars. Worth seeking out a referral to physio to get it sorted if you can. It's obviously a lesser issue now compared to our Tax/other SE but could be worth sorting in the long term.

 

Suze

xxx

 

 

Blue2
Member

Re: Chemo JAN 2017

Thanks Jackie. I suppose I'll just have to see what they say about my order of things. I was hoping for a bit of a break from it all, time to recover from chemo for a few weeks before surgery and following surgery for a few weeks before radiation, before the hormones hit permanently, however typing that now makes me realise its ridiculous! Like you can have a break from cancer treatment?! Sorry to hear you're struggling with the last dose SE. The only way is up now!

Egg/Beedot and anyone else who had vein problems from EC, I've been given hiruoid cream to use but since I've been using it, my affected veins have become more visible and the aching/bruising feeling in my arm is worse! Is that normal - does it get worse before it gets better, or does that sound wrong?!
Jackie1952
Member

Re: Chemo JAN 2017

Hi Blue,

My Tamoxifen started the day after my final chemo last week,  and before I even have a date for radiotherapy.

However, this IS Spain, and my oncologist is all for throwing the big guns at me.

Good luck to all having final chemo this week.

Let me know when it's done so I can award the badges.

I'm not enjoying the SEs of my final Tax.

Blue2
Member

Re: Chemo JAN 2017

Good luck to those passing the finishing post today! Save me a sausage roll for when I finally get to the party myself! Although, sausage rolls....in Tobago?!!!
Lighthouse, I would be interested in reading any information you get re hormone therapy. Tamoxifen was mentioned to me way back in December at the start of this journey, but nobody has discussed it with me since, as I still have surgery, radiotherapy to come. I was under the impression that hormone therapy would start right at the end of treatment, after chemo, surgery and radiation..... What are others experiences with this?
X
Mooney
Member

Re: Chemo JAN 2017

Good morning amazing chemo warriors! And congratulations to everyone who
has had their last chemo. I am having my last Tax today (hurray), long day as no blood test yesterday as bank holiday so have to go in early as very busy. Think as ot is an hour and half round trip it will be all day jobby.
I am concerned as still having hangover SE's from last Tax. Tips of fingers painful and eyes running and crusty. But at least this is last one.
I understand all your fears moving on. I haven't got my head round how I feel yet. There is still radiotherapy Letrozole and port out to cope with. Everyone keeps saying last one as if that's it, and it seems churlish not be excited and i can see light
tunnel etc but.......it changes you. I would like to do moving on course I think.Friends and family say 'oh soon all over, back to normal' not sure what is normal for me any more. ñI know I am not the only one thinking this or over thinking as my OH says.All you younger ladies ( I am a very young 65!)coping with children and chemo and menopause, I take my hat and wig off too you. You have so much more to cope with and do it with such resilience and fortitude, whilst having your own worries and crises.
On a more amusing (or not) note. I was out with family in Newark on Saturday, had lovely day but about to cross road and wind got up and spiralled wig up off head and down road.! I was so shocked and panicked I just ran after it trying to catch this thing that looked like a live animal rolling ahead of me! Caught it eventually and returned it to head, to find family howling with laughter trying to look sympathetic. Can't wait for hair to grow back.
Good luck to everyone this week.
Robin Slowski Scotty Jackie and everyone who has had last Tax hope SE's manageable. At least this part of journey over, looking forward to party, and can't wait for the Caribbean, did someone say Tobago?
Hugs and love to you all
Mooneyxx
Beedot
Member

Re: Chemo JAN 2017

Hi all,

regarding the "fear" and moving on after all this treatment,  I just thought I would tell you about a friend of mine who visited today. She had it 12 years ago, at age 40, she had chemo, RT, mastectomy, reconstruction. She had a consultation a few months later about whether she wanted more children and concluded not so her treatment plan was amended to take account of that. She remains on extramasane because she has refused to come off it. Her recent 3 year scan was fine. She has a wonderful attitude to it - it changed her life, she rearranged her priorities, got a balance, stopped putting up with people she didn't particularly like and is really content with life. She knows she did everything in her power and she doesn't let the fear creep in. She has been very supportive and a great role model. I would like to be able to follow her example!

good luck everyone this week.

Beedot x

 

lighthouse07
Member

Re: Chemo JAN 2017

Afternoon all, just catching up with the last couple of days.

Blue2 - thanks for your comments re my questions over hormone therapy, I am also 45 so not in the very young bracket, think i was just thrown a bit because i had also been told that Tamoxifen would be my next treatment, so to be given a different drug combo just unsettled me.

OldDawn - thanks for the Allred link I found that really helpful.

I phoned my BC nurse in the end to talk over why my onco was suggesting the combo of Zoladex/Letrolzole and to try and establish why the deviation from what I percieve to be standard treatment for pre menopause. She explained that this combo for my hospital (and my pathology) will now be standard treatment and not Tamoxifen. This has only be the case for the last 8 weeks or so and is based on some recent studies. I have asked if she could let me know which studies so i can do some further reading, happy to share if people want when i get the info. In addition re Dexa scan they continue to say that due to my age there is no indication to scan despite chemo and planned Hormone therapy as i will also be able to take a bisphosphonate. This should have bone protective properties as well as other recent studies indicating protection against bc reoccurance in the bones. Greatest benefit to women who are post menopausal or pre menopausal women who have been treated with drugs to supress their ovaries. So much to take in but still would love to hear if others have any alternative experiences or been given other advice.

Wtp2016 - I would echo some of the others advice/comments re fertility- chemo doesnt always turn off your ovaries, hence the reason why i am being told i need to do this chemically despite my periods stopping between cycle 3 and 4. Make your team aware of your plans and they can share the options with you.

Nickyh - My last tax is Tuesday too - we are nearly there!!!!!!!!!!!!!! Have RT planning just before so busy day ahead. be keen to hear about your hormone therapy plans too as it seems you have also been given different options and then back to Tamoxifen.

 

Love the Tax teddies in tabago - one of the chemo rooms i use has a whole wall print of a carribean image i will try and take a photo to share and we can dream!

Much love to all. xx

 

 

Beedot
Member

Re: Chemo JAN 2017

Congratulations Jackie, our posts crossed last night, well done for finishing!

 

I don't know if it is the Tax or just cumulative chemo fatigue but my mood is definitely lower now. I feel like I have PMT - on a short fuse and ready to snap at things that would normally wash over me. I don't think it is hormones in my case and at my age (59) so add to that hormones for you younger women and what a mix that is, no wonder you are up and down, well done for keeping it together and as the others say, let it out here.

 

I am am pleased to hear reports back of the prep for RT, it doesn't sound as daunting as chemo, thanks for the reassurance Robin, Nicky and Dawn.

 

Hugs to all Beedot x

nickyh
Member

Re: Chemo JAN 2017

Hiya chemo buddies.

Just been catching up on this fantastic thread.

Firstly congratulations to all you tax warriors who have completed this part of the journey you have all done so well and been so strong... I can't wait to join the party! My last tax is next Tuesday and although I have the usual anxieties about what is to come the thought of knowing it will be my last will push me over that finish line.

Wtp - I had an meeting with my oncologist last Thursday and he can't decide what hormone therapy to give me. I am 43 and pre menopausal. My bc is 8/8 for both oestrogen and progesterone. At first he was saying he wanted to give me injections to suppress my ovaries and give me exemestane, then he decided he will start with tamoxifen as this is the standard treatment and there may be new drug trails that he wants to see if he can get me on which you may only be eligible for if on tamoxifen. In the end he told me to start taking tamoxifen 3 weeks after last chemo and come back in 8 weeks time and he will review the situation. Will keep you updated.

I then had my CT scan for radiotherapy on Friday. This was pretty easy, you have to lie on your back and they move you around a little till they are happy with your position and then draw on you and pop stickers on you. I then had to hold my breath for 20 seconds while they scanned me, which they did 3 times. Then they gave me the tattoos....they are a tiny blue dot, you actually struggle to see mine and it doesn't hurt, just a tiny pin prick.

I am getting 3 weeks of radiotherapy as I have already had a mastectomy starting on 23 may and finishing 12 June.

Suze I would love to hear about your "moving on" course. Like Egg and Wtp I worry constantly about the future, the effect on my children and if this horrible disease will come back. My OH has been really supportive but believes that soon everything will be back to normal but I feel like things will never go back to how they were before and I will always have " the fear". I guess you just have to learn to live with it.

Sorry for such a long post.

Will be thinking of that carribean holiday whilst getting my final blast on Tuesday!

Nicky x





CMM
Member

Re: Chemo JAN 2017

Hi - I know all about whitenpatches having had them for the last week after 2nd tax (5/6 down 1 to go) - it's probably thrush - so use chlorahexidine mouthwash and get some Nystan from GP or chemo unit - good luck!
RobinJ
Member

Re: Chemo JAN 2017

Well done to Esther, Slowski, Suze, Fen Hen and Jackie who all crossed the chemo finishing line this week. More people at the party! Plenty of room still for everyone else. And a Caribbean holiday in the offing. I agree - no red cocktails.
Good luck to everyone due to finish or have treatment next week.
Wtp, of course you must use this space to give free rein to your feelings and emotions. This is such a difficult journey but we've all got each others ' backs. I don't have children of my own so I can quite understand how you must feel.
My radiotherapy planning meeting was a much better experience than the mri. Good old royal Marsden. You were quite right (Dawn I think) I didn't need the picc for the ct scan so I could have had it removed last week. Grrrr. Why is it we patients know more about procedures than the staff who advise us?!
Things I have learnt this week - if you want to be offered a seat on a crowded commuter train becaue of weak jelly legs, it is not enough to wear a low immunity face mask. Realising fifteen minutes into journey one should have gone wigless as well is too late!
Can someone remind me, what does it mean if you have white patches on your tongue?
Hope all teddy warriors have good weekends. R x
Nikki49
Member

Re: Chemo JAN 2017

Hi wtp,
I finished chemo end of 2013, we were a large group of around 40
One of the young girls had an embryo frozen But unfortunately at the end of last year her last chance failed. However we have just found out that she naturally conceived against all the odds.
So don't give up all hope, it could still happen x

Blue2
Member

Re: Chemo JAN 2017

Hi Wtp,

I don't know what I can say to help you at this time, apart from that I'm so sorry about what you are going through.

I do suggest that you check the potential permanence of your menopause/menopause symptoms with your oncologist and MDT though as they may be temporary and there may still be options for you after chemo has finished. Maybe the nurse doesnt have your full story? Either way, somebody needs to discuss it with you, especially as more children factored in your future plans.

I struggled to conceive - it took me years! - and was truly grateful for my first healthy son, but like you, i wanted more children for probably just the same reasons you do. I think had the decision/option to try for more children been taken out of my hands...... Well, actually, I don't know what I would've thought. Cheated probably, for myself, my husband and my son. And a whole host of other emotions. And add them to this hellish rollercoaster you're on anyway....... Don't be too hard on yourself about your feelings.

I too am being foul to my husband, so yours and Jackie's aren't the only ones taking the brunt of this. And I'm more disinterested and disengaged with my children, i sometimes go from 0-10 in seconds as have less patience with them too. They are older than your daughter so I can explain that I'm tired or my treatment makes me grumpy, however they are still children and don't wholly grasp that! I have night flushes every 90 minutes and daytime flushes more frequently. This is probably the worst SE for me at the moment. The thought of being thrown into the menopause makes me really mad and upset, however I am older than you and my family complete, however it's still hard for me to take!

Keep talking. We will never completely understand your position and situation, but will be with you as best we can and will be sharing some of your experiences as they are ours too.

X
EggG
Member

Re: Chemo JAN 2017

Dear WTP,
I completely understand how you feel, and I think it is normal for us all to feel like this. I too have days when I feel so fed up, sweaty one minute then emotional the next. I'm sure it is hormonal. And sadly it is the kids who sometimes get the brunt of our moods. My son actually said to me "I thought you would be nicer now that you have breast cancer" 😜
We have come so far and it has been a long slog, and even though you are more than half way you still have more treatment, (and then surgery I believe) and then radio to go, so it still seems a long way off.
Plus I think the chemo makes our bodies tired and hence we are more emotional.
My neighbour came over last night, she is also young (41) and had breast cancer 2 years ago - first thing she asked was whether my emotions had been all over the place. So I think it's very very normal.
I do know 2 sisters who had breast cancer and one went on to have a baby after treatment. So it's not completely out of the question. Is it something you could ask your consultant about when you see him/her?
I'm thinking of you and hope you feel better later today.
Sending hugs to everyone else on this bank holiday weekend. Keep thinking of those palm trees and cocktails!
Egg x
Jackie1952
Member

Re: Chemo JAN 2017

Dear Wtp2016,

Please don't ever feel sorry for sharing your emotions with us.

If not with us, your chemo buddies, then who?

In general, I think we all have spells where we are weepy, and just downright nasty to our OHs.

They, poor sods, have to just stand and watch us got through all of this, and feel powerless.

My OH has not put one foot wrong all the way through, but there are times when I just want him to shut up and leave me alone.

I think you will find many others are the same.

But we hit out - because we need to offload those negative feelings, and they are closest to hand.

You are for me, a prime example of the bloody unfairness of this disease.

I've said before that at 65, I feel I've dodged the C bullet for long enough to have had most of my life.

You young women are the true victims.

You simply don't deserve it.

I have been blessed with 2 beautiful children, and if someone had told me I had to stop at one, I would have been like you - utterly devastated and bitter that this vile illness has potentially robbed you of the chance of another child.

 

So don't ever apologise for letting it out to us.

 

We are here with love, support and virtual hugs to help you through.

 

I pray that your SEs lessen so at least your physical side can strengthen.

 

HeartHeartHeart

Wtp2016
Member

Re: Chemo JAN 2017

Huge congrats to all you chemo grads!! What an achievement!! 🙂
I had my 7/12 weekly tax on Thursday. I've been feeling so low recently though. SEs have been really kind but I think my hormones are messed up as I've been so close to crying or shouting at everyone all week. Has anyone else been like that? My patience with my 3 yo daughter has been non-existent and then the guilt hits. I couldn't even speak to my OH on the way to hospital this week I was so full of bitterness.
Then to top it off I asked my nurse about the hot flushes (at least 20 each day, not joking) and her response was a very sad face with "yes, unfortunately treatment can speed up the menopause". I knew this was a possibility but I had been planning another child prior to my diagnosis as I so wanted my daughter to have a sibling, a friend for life. It makes me so sad to think this isn't possible. As truely grateful as I am for having her. I really don't want to sound ungrateful as she is the best thing that ever happened to me.
I should be happy that I'm going to live and be there for her but I just feel super emotional at the moment.
My OH doesn't seem to get it.
Sorry to sound so negative. I think it's just that whole downer - being so close to finishing yet still so far...
Bring on Tobago! And yes, no red cocktails!! Xxx
Esther c
Member

Re: Chemo JAN 2017

Thank you so very much for my chemo graduation badge!!! I made it!!
Huge congrats to Slowski, Suze, Fenhen and to badge master Jackie - well done ladies!
Just starting to feel like I'm turning a corner now. Rads will start on 22 may but in the meantime I have a week in north Devon to look forward to.
Truey - thanks for the spa advice.
Have a lovely bank holiday weekend all. X
OldDawn63
Member

Re: Chemo JAN 2017

Jackie - congratulations, you made it despite everything the chemotherapy threw at you, including BOB and Roberta. Now you have finished their days are numbered. I hope your SEs are mild and you will have enough time to recuperate before radiotherapy starts.

 

There is a May 2017 Radiotherapy thread which you can join when you start. If there is anything you want to ask about radiotherapy in the meantime, I will do my best to help if I can.

Beedot
Member

Re: Chemo JAN 2017

Congratulations Esther, Fen Hen, Slowski and Suze! Flooding across the line now!

Jackie, fingers crossed that you are done too?

I have 5 of 6 on Tuesday so a few weeks to go yet, then rads. I will think of being on that sunbed in Tobago, cocktail in hand, with my fellow teddies on Tuesday.

 

I really feel for you younger women who are coping with children and also menopausal symptoms from the treatment, I sure remember those white hot flushes and sweats - always a good moment to check the contents of the freezer - followed by shivering. They didn't go on for long at that intensity though. 

 

I know we will move on to discuss hormone treatment more as we get to that stage but just to say, I was put on Anastrozole for 2 or 3 months because my chemo start was delayed (onc said it was just as effective as chemo as an adjuvant treatment). I dreaded it but I can honestly say it had no obvious immediate SEs at all for me except a vaguely strange smell/taste at first. I did have a DEXA baseline scan which was arranged as soon as I started it. I came off it during chemo but will restart afterwards.

 

I hope everyone has a good bank holiday weekend.

hugs Beedot x

 

 

Jackie1952
Member

Re: Chemo JAN 2017

 

IT IS DONE!

 

13230322_983453458434663_6691431685137910600_n.jpg

Final TC for me today, and the vein held up - though it really was touch and go. Every time the bags were changed it was painful, but I held on, and it got better.

 

Thank you for all your good wishes - now waiting with baited breath for the next three weeks to pass.

Radiotherapy starts in 4 weeks time - I think I will be having 30 sessions, but I am prepared with my R1 and R2 creams.

 

Tamoxifen (for 10 years) starts tomorrow.

 

So, as the badge monitor, I hereby award myself the graduation badge and certificate.

Looking back, it seems to have flown by, and like childbirth, the bad parts are a distant memory.

 

87f432a2f65023047c21b535306547eb.jpg

 

 

69fd1fa157b0af062e875ff1329944ce.jpg

 

 

 

 

 

 

 

Suze123
Member

Re: Chemo JAN 2017

Thank you for my graduation badge Jackie and good luck for yours!

 

Thanks for your kind messages everyone!

 

Suze

xxx

EggG
Member

Re: Chemo JAN 2017

Jackie all the best for today hope it all goes according to plan!! Badge for you later fingers crossed!
Egg x
Blue2
Member

Re: Chemo JAN 2017

Thanks for the info Old Dawn. I knew 7/8 meant my cancer was quite hormone receptive, but that's as much as I knew!
Blue2
Member

Re: Chemo JAN 2017

Congratulations Slowski and Suze for crossing the line! Just imagine, in 3 weeks time your body will be continuing to get better, rather than being knocked back again by treatment! I am excited by that thought myself but have a while to go.

Good luck for today Jackie.

Hope your moving forward course helps Suze. Do report back to us - am sure many of us will have struggles moving forward and finding a new normal when the time comes.

X
Jackie1952
Member

Re: Chemo JAN 2017

To Suze 123

 

For bravely and successfully completing 6 rounds of chemo, complete with stomach cramps and marshmallow tongue, I am delighted to award the graduation certificate and badge given to all Tax teddy warriors.

Well done!

 

87f432a2f65023047c21b535306547eb.jpg

 

 

69fd1fa157b0af062e875ff1329944ce.jpg

OldDawn63
Member

Re: Chemo JAN 2017

Evening all - and congratulations to Suze and Slowski for reaching the final stage of chemo, and getting you graduation badges. Hope the SEs are mild/ under control​.

 

Jackie - glad to hear that Roberta is being beaten into submission by the antibiotics. As Friday is graduation day for you (at last) does this mean you have to award yourself a badge and certificate?

 

Robin - OMG not you too! The worst cannulation I've ever had was done by the MRI technician last time I had a MRI scan. She was very nice but made a terrible mess of my hand. By the time I got home it was all bruised and swollen, and I thought it was infected. Fortunately it wasn't, but it took weeks and lots of Heparinoid cream to put right. Hope the radiotherapy planning went more smoothly and that they sorted out your PICC. CT scan is easy compared to MRI - you're lying on your back, there are no noises as though a gang of workmen are building a new road in the room, and it only takes a few minutes to pass through the big white doughnut!

 

Lighthouse - I am on Letrozole (AI) as post-menopausal so not sure whether you have Zoladex instead of Tamoxifen, or as an extra thing with it. There is a brief overview of hormone therapy on the Cancer Research UK website but it doesn't really explain. Here's a link to the Cancer Research UK information:

http://www.cancerresearchuk.org/about-cancer/breast-cancer/treatment/hormone-therapy/about

 

Blue2 - I am ER+ 7/8 too. This is the 'Allred score, based on your biopsy results - the higher the score out of 8, the more likely you are to benefit from hormone therapy. The score doesn't affect the type of hormone therapy, but it does affect the decision over whether you should have it. If you have a high or moderate Allred score (anything over 4/8) it is assumed you would benefit from it. As a general rule, if you are pre- or peri-menopausal you get Tamoxifen, and if you are post-menopausal you get one of the aromatase inhibitors (AIs), usually either Anastrozole or Letrozole. For further information see:

http://medical-dictionary.thefreedictionary.com/Allred+scoring+system

 

Ebim - I haven't had a bone density scan and it doesn't look like I am going to get one any time soon. I asked the oncologist about this when I went for my 3 monthly review on Monday. He is of the view that I won't need it for at least 5 years, given my age (53). I will have regular blood tests to check calcium levels, which at the moment are normal, so combination of diet and calcium/Vitamim D supplements are currently working.

 

I am in the hot flushes/ hot and cold club as well as some of you. I thought​ I'd done with all that but no, the last lot of chemo seems to have triggered it, and the Herceptin and Letrozole are keeping it going.

 

It's not too bad to be honest, because I only get the flushes two or three times a day, but it's annoying the way it suddenly happens at random any time of the day or night. At</span>&nbsp;night I have found the best things are loose lightweight pyjamas and a light summer duvet with a throw on top. When you get too hot you can just remove the throw from your side, when you get too cold you can pull it back on again.

ebim
Member

Re: Chemo JAN 2017

Egg thanks for the best laugh in ages...Tax Teddies in Tobago!!!  Now that is a good film title. Best one yet.

 

sorry chemo brain set in can't remember who mentioned the DEXA scan.  I was lucky as my rheumatologist organised it for me, the main reason being that he will use it as a base in the next few years to see if my bones have been affected.  Having had osteoporosis it made good sense.   I think the same philosophy should apply to all who have chemo simply because of the damage done to the bones.

 

Still chuckling over the Tax Teddies in Tobago, what a wonderful thought, we all turn up at some exclusive resort with our moth eaten heads, dripping crusty noses, swollen running eyes and with all the other indignities that we have gone through to start our Tax Warrior war cry!  Should cause a stir.

jackie thinking about you tomorrow, best wishes for an easy time.

love to all you wonderful Teddies Ebimx

Suze123
Member

Re: Chemo JAN 2017

I am done with chemo! 6/6 FEC-T done today! Thanks Slowski and Egg for your support. 👍😘

 

i await the Tax SE (for me, it's horrible stomach cramps but have had my Buscopan dose upped to 8 tablets a day by my Onc today and marshmallow tongue aka oral thrush - so my fluconazole tablets were also doubled today). I'm rattling!!

 

Still got Radiotherapy starting in four weeks plus ongoing physio for my arm cording and a BRACA gene test in the offing. But, as triple neg, no further meds and surgery was done in Dec.

 

Feel a bit flat really, I'm starting on the Breast Cancer Care 'Younger Women Moving Forward' pilot course in Manchester in a couple of weeks. Their first course that's designed specifically for under 45s which will be rolled out if it's a success. I think it will help lots with the worries, anxiety and finding my new normal. 

 

Keep soldiering on Teddy Warriors, we will ALL get there together 😘😘😘

 

Suze

 

 

EggG
Member

Re: Chemo JAN 2017

Doesn't an all inclusive to the Caribbean sound like paradise though? Under one of those massive straw umbrella things I see on pictures to hide our bald heads!
The Tax Teddies hit Tobago 😂 No red cocktails though - it reminds me too much of FEC!
I think I'm going to use that as my positive visualisation next time I'm doing chemo. 🙂
Blue2
Member

Re: Chemo JAN 2017

Yes, I feel the same Egg about the worst being over by the start of the new school year and have marked it as a positive point in the future - a new beginning. Although i imagine my radiotherapy might still be ongoing, which obviously isn't a walk in the park, but it's hopefully better than this!
My boys talk about each stage of treatment to come and what it entails, focussing on really odd things like having a boys night in with their dad whole I'm in having surgery, and the fact that I'll be getting tattoos (cool!) with radiotherapy. I think these things stop them focussing on the gravity of the situation but know from their behaviour and emotional outbursts that they are struggling a bit now. They frequently talk about when its all over - my eldest asked yesterday what we will do when it is finally over. He suggested a holiday - all inclusive to the Caribbean!! I told him that treatment might be over but our finances won't have changed, so how's about a cottage holiday in the UK at October half term instead?!!!!
EggG
Member

Re: Chemo JAN 2017

Slowski and Suze - well done for finishing!!!!!
EggG
Member

Re: Chemo JAN 2017

Blue - good to hear about the PICC line - I have been resisting it but think it will go that way. Like you my boys are starting to be more worried by it all and it's sinking in for them more now - things having to be postponed because I haven't been on "good days" and then seeing me when I have been very unwell. They react in different ways though - my older one has become a perfectionist at school but the little one has been acting out by talking in class all the time and arriving late to lessons...never mind - only a few more weeks until the holidays ! And then this will be hopefully sorted by start of new school year!
Blue2
Member

Re: Chemo JAN 2017

My oestrogen was 7/8 Lighthouse - don't know if that affects treatment choice?
Blue2
Member

Re: Chemo JAN 2017

Hi Lighthouse, sorry I can't offer you any insight re hormone therapy. I have just completed 6th chemo (of probably 8, so 2 more to go potentially, but it depends on my toxicity the onc said) and then I will have surgery in the summer and radiotherapy in the summer/autumn all before starting what I was told would be tamoxifen for 10 years. Maybe they are suggesting the treatment they are for you if you are very young? I'm 45 so I suppose I would've been heading for the menopause in the next 5-10 years anyway although I think with my hot flushes, night sweats, grumpiness and zilch libido I might be there already!!!

Egg, I had a picc line put in this week, even though I'm so far into my treatment, as after I had ec1 through a cannula 3 weeks ago, i still have a sore, bruised arm, and it's my good arm going forward (will be having axilla clearance in other one). It was fine, and after the first night of tenderness, feels fine too. And it did make treatment easier yesterday. My boys won't look at the picc though - I think it's the first visible sign they have that I'm having treatment as i still have head hair and a largely happy face when they are around! I worry I'm protecting them too much, but don't want them worrying about me more than they are. They are starting to struggle a little - I think it's been going on for so long already - 4 months is a long time for a child I think.

Is tomorrow really your last tax Jackie? I can't believe it. I think I feel as excited about it finishing as you must be! Your poor body needs abit of a break!! I hope it all goes well and your final side effects manageable.

X
Slowski
Member

Re: Chemo JAN 2017

Awww thanks Jackie, you're so kind and thoughful to us all X

Jackie1952
Member

Re: Chemo JAN 2017

To Slowski

 

For successfully completing 6 sessions of chemo, and coping with the steroid insomnia and joint pain like a true warrior, I am delighted to award the badge and graduation certificate that such bravery merits.

Congratulations!

 

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Slowski
Member

Re: Chemo JAN 2017

Suze,

Go chemo buddy! Look forward to hearing how its gone. Sending positive vibes to you and all others X

lighthouse07
Member

Re: Chemo JAN 2017

Morning all, I am loving hearing all that are graduating, it brings a smile to my face each time one of us gets across the line!

After some advice/thoughts please teddies, had an onocology appointment yesterday that has left me confused, but I do seem to recall someone else on here talking about the drugs but not sure who and even if the indications for the treatment were the same. I had assumed and previously been told that i would go onto tamoxifen as strongly hormone receptive 8/8 and pre menopausal. However now been told that current evidence suggests ovarian suppression is recommend and advised to start Zoladex to stop oestrogen production from ovaries and Letrozole to block enzymes that can change other hormones from fatty tissue to oestrogen.  I understand the principle but unclear if this is considered standard treatment as i thought from my other reading tamoxifen was standard treatment? Does any one have any experience of this? I also asxed about a baseline DEXA scan and was told this was not indicated due to my age  - i thought any one starting hormone therapy was offered one??

Off to try and enjoy the sunshine while it lasts, much love to all. Looking forward to hearing about the next round of graduates! xxx

 

Suze123
Member

Re: Chemo JAN 2017

Slowski, chemo buddy... well done on getting to the last one! 🎉🎉😘

 

I have my last Tax tomorrow too. Then on to rads...

 

i got bad jaw pain on the last two and thinking about it, I've had surgery there, so the weakest joint theory is obviously 'a thing'!

 

Good luck to everyone else getting their doses this week. 

 

Suze

Wtp2016
Member

Re: Chemo JAN 2017

Evening lovely teddies!
Jackie - glad to hear that Bob & Roberta are getting better - you've had a particularly tough time and it's such a slog even without the added "complications". I know it sounds cliched but this is all making us stronger - even if it doesn't always feel that way.
Robin - this is the place to come for a moan and quite rightly so, it sounds like quite an ordeal! I think we're all just getting fed up now and as much as I feel like I'm being ungrateful when I moan, I think we have earned the right as this journey isn't easy. I hope you feel better soon.
Egg - no injections on weekly paclitaxel - my onc said they weren't appropriate for this type of chemo. When my neuts dropped, he lowered the dosage and said he'd rather do that and try to get to 12 than have higher dose but have to stop at 9 due to neuts getting too low.
Re steroids, I get some in IV as pre-meds- not sure what the dose is though. I get steroids, piriton and some sort of antacid as pre-meds in IV just before the taxol. Each take about 10-15 mins to go on then the taxol takes an hour on IV as well. The piriton makes me pretty drowsy, some people actually fall asleep. The steroids woke me up early the following day for the first few weeks but I now feel like I'm getting immune to it or maybe the accumulation of tiredness is counteracting them as I seem to sleep better. Or maybe it's the lower dose! So no meds to take in advance nor to take home with me.
I hope you find it easier than the 3 weekly. My BCN said it's kinder and referred to taxotare as "just plain nasty" in comparison. Oh and my hair is def growing back!! A bit bald on front but can't stop stroking it!!!! How's everyone else doing?
Good luck to you all!! Can't wait to join the party xxx
ebim
Member

Re: Chemo JAN 2017

Robin, canulas are items of torture, so sorry it has gone so wrong at the very end of the chemo.  

Hope you get it sorted very soon.  So difficult to sleep if its placed in the wrong position.

Egg - hot / cold sweats another tortuous problem. Having been through the menopause I thought they were behind me, but no back with a vengeance....and worse just after Tax.  Vitamin C might help.

Slowskie - yup pain in newish left hip and left thumb, both problem areas, The weakest points for me.

Scotty / Egg - we are the army of JAN 2017 - we have been through too much togerther not to stay together.

We will stay together until the last warrior finishes.  

 

And Jackie, bless you for all the messages and now the badges - Gigantic Hugs for Friday. 

 

Love to all, Ebimx

Fen Hen
Member

Re: Chemo JAN 2017

Oh Robin, that's rubbish, so feel for you xx. I do hope you get it out very soon and your hand recovers quickly xxx

Jackie you have been in the wars, great that Bob is getting the message and getting better. Heads seem so much more vulnerable with no hair, hope it's not too sore 🤕

Take care, we will all get there, and so worth it for getting rid of the b****r xx
Scotty66
Member

Re: Chemo JAN 2017

I'll be in the late finishers group too! Had 6 chemo now just one with herceptin and perjeta left. Surgery next but don't know what yet. MRI at some point. Rads after that and then herceptin for the year. I WILL get my certificate one day!!
Slowski
Member

Re: Chemo JAN 2017

Warriors,

Had chemo 6/6 yesterday with Herceptin and Zometa, apparently its only available for primary BC in some areas and we are one. Steroid insomnia and some joint pain, mainly in previously arthritic hip - has anyone else had this where Docetaxal seems to pick on the weakest joint? I have no dates yet for rads and in for the long haul as 15 more Herpectins 3 weekly so I don't think anyone needs to worry abut beng left behind, we can all continue to suppport each other long beyond the last chemo.

Very best wishes to all of you Xx

RobinJ
Member

Re: Chemo JAN 2017

Jackie glad to hear about Roberta and that you are back home but sorry to hear about the hole in your head! The badges are great and you will award yourself one soon. Fantastic. R x
RobinJ
Member

Re: Chemo JAN 2017

Don't worry Egg. We are here for you as long as you need us. Fen Hen the party is a little quiet at the moment while we cope with our fatigue. It will liven up later. Dawn thanks for the advice re picc and c.t. and radiotherapy. Unfortunately I saw it too late! I actually asked to keep the picc becaure I thought it might be needed for the ct. This is because the mri and picc didn't go that smoothly yesterday. Firstly my mri was delayed because two emergency babies went in before me. I felt sorry for the poor little things having to listen to those awful bangs and noises. Then a very sweet but not very competent young male nurse tried to cannulate me. (Even though I had kept the picc line). It was the most painful cannulation I've ever had and it failed. He withdrew the needle and dark red blood shot everywhere. It feels like hand has been hit with a hammer. Then he got an anaesthetist (there to do the babies) to do injection through my picc line instead. Had mri which was challenging - loud, long and uncomfortable. Went up to chemo ward to be flushed and dressing done and told them I had ct coming up as didn't want another painful failed cannulation. So picc line is still there. But worse! Different nurse did dressing. She has positioned it so that there is no way I can keep it dry and wash underarm. And the dressing is already peeling off. Just hope radiotherapy people can sort it out tomorrow. Sorry to moan but it helps to have a good whinge. I do love the NHS and appreciate everything they are doing for me really. Hope everyone has good days. This teddy bear has jelly for legs at the moment. R x
Jackie1952
Member

Re: Chemo JAN 2017

To everyone asking about Roberta, I am pleased to say the antibiotics seem to be working, and my surgeon was happy to let me go home.

So I am on track for my final Tax on Friday.

However, this morning, in a chemo fog, I cracked my head on the very ornate front door handle, and now have a hole in the middle of my forehead! You just couldn't script it could you?

 

I must be missing extra holes!

 

Truey - enjoy your spa day. It's well and truly deserved.

 

RobinJ - the breathlessness and leaden legs are the pits. I can only say that you should just rest, rest and rest some more. I have found it less after Tax 5, but not until week 3.

 

Wtp2016 - I have only had the flushes at night. but then I am well past normal menopause. I hope it imporves for you.

 

EggG - please don't worry about the finish line being late. I will still be here, no doubt whinging about my radiotherapy, and then whatever hormones the oncologist decides to inflict upon me.

I will be here to award the badges and certificates until all of us have finished the chemo.

 

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Jackie1952
Member

Re: Chemo JAN 2017

Firstly,

It is my absolute pleasure and delight to award the badge and certificate this morning to Esther c.

For bravery and fortitude in completing the chemotherapy marathon.

Congratulations.

 

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EggG
Member

Re: Chemo JAN 2017

Wtp - quick question - do you do the gcsf jabs with weekly paclitaxol? And what dose of steroids do you have? Just wondering how it differs from the 3 weekly.
Thanks! Egg x
EggG
Member

Re: Chemo JAN 2017

Wtp - I'm with you on the sweaty heads. Hot then cold then hot. Also worried that it may be like that on tamoxifen! I had my periods all the way through EC but they have stopped now so maybe hormones are playing a role too.
I'll be just behind you on the finishing line - start the Paclitaxol next week and will have 9. Seems a long way off at the moment! And yes then surgery (not sure what yet) and then radio. So its looking like an autumn finish for me! I will be the lone person proppping up this thread so please do stay around everyone and keep me company!
I asked about a Port at last appointment but the registrar said they would prefer a PiCC if I had to have something because of the fact I am due to have surgery. It seems we all get told different things!
Good luck to all finishing this week, I am very jealous!
Egg x