Starting chemo in June

[Guest user]

My brand is Wockhardt ? I better be fine , can't be bothered with side effects , lol , and i am actually losing some of that chemo weight as appetite bk to normal .

[Guest user]

The end of my post didn't....ummmm...post!

Just said that I hope the anti-bs work and that at least your rads aren't for a while so it won't delay them.

Am on a train at the moment having major hot flushes....better get used to them!!

X

[Guest user]

Start tomorrow. Having a fertility test and scan and will pop one afterwards. Have them all ready to go...although a bit worried as have the brand that a few people have had difficulties with on a thread... Oh well! Time will tell.

[Guest user]

Hi - Well i have an infection and the site is nacrotic. Acccording to her , i thought it was simply a scab . Anyway it has burst open due to seroma and infection , on antibiotics .

Also just taken my first Tamoxifen !!!!!! Sandytoes have u started yours ?

x

[Guest user]

Oooh Lorna! Hope the GP manages to help. There was another thread where they were talking about some injection that clears up seromas...maybe you can look into that...??

Hope you're OK. Don't think I'd cope with that very well - am so squeamish!!!

x

[Ninja]

I have finally (after a month) started to be able to wear a bra. Up till now, I've been wearing vest tops with shelves in, one or two sizes too large, to fit round the seroma.

[Ninja]

Oh Lorna, that was just what I was dreading but BCN told me that in 'xx years' she had never seen stitches burst due to a seroma.
Ouch and tiny teddy bear hugs.

Seroma in my house is finally resolving, just as I thought that I'd be a fake B cup for ever. I still have some swelling, maybe an AA cup now, but no fluid.

[supertrouper]

Poor you Lorna! Hope you manage to get that sorted out today. As for what to wear? A swimming costume might be more comfortable or just a very loose top.

[Guest user]

Hi - Woke up this morning and PJ top were soaking down the front ,mastectomy scar is leaking , seroma felt tight last night so it has burst a wee bit ! Eeek , got appoitment with GP at 11 so hopefully he can treat it as i have no way of getting to the city .

Typical as i have sons party on Sat , god only knows what i will wear as at this point i def cannot attempt a bra !!!

xx

[Guest user]

Think positive thoughts , on the whole you seemed to cope well with the chemo , so lets hope your reproductive bits did as well !!

xxxxx

[supertrouper]

Sandy - try not to think to far into the future. We are not fortune tellers. Keep the faith x

[Guest user]

And your onc hasn't even seen the pathology report yet, so he should have bitten his tongue.

Have just been to doc's to pick up Tamoxifen. Have got an appointment on Friday at a fertility clinic to try and ascertain whether the chemo has left me infertile or not and will start after that. Wont get the results for 10 days or so, but know I will be feeling just as nervous about those results as I was waiting for the cancer diagnosis. I know the most pressing thing at the moment is the whole cancer thing - but if I don't have a recurrence, I just couldn't bear waiting for the 5 years of Tamoxifen before finding out if I am or am not able to have children. I'd always pictured my future with my husband with little hims and mes and just can't imagine what I'll do if I am clear in 5 years time and not able to consider startng a family. Although I think adoption is fantastic - it's not really for me and have done a bit of research and you have to be 5 years clear - but don't think they're overly keen on people with a cancer diagnosis and I'll also be almost 40 at that point which I think is another black point against you...

Sorry to offload. Such a worry and it's weighing on my mind at the moment with the test coming up...

x

[Guest user]

Thankyou Guys !!! I needed that . I am seriously a very upbeat person , i try so hard to focus on positives 100% . My OH tends to have a half empty glass as mine is always brimming over ( normally with wine ).

My surgeon is the nicest man and so caring , he has spent a lot of time with me explaining my diagnosis . The onc team are very much in and out , different standards of care by a mile . I think the fact as well that my surgeon has read something in my notes that has made him so positive that they missed my cancer in 2010 is preying on my mind as well . Every instinct at that time told me i had cancer . How does a Grade 2 cancer , grow to the monster i had in a year ??? Grrrr

I am off to a meeting at work , spent ages trying to get eyebrows right ,lol , then i forget and rub them off . Also my son is 21 this weekend and decided to throw a suprise party so busy busy .

Isn't it great Sandytoes to feel well . I hope u catch up soon supertrouper , I def feel like i could tackle the world at the moment .

What do ONC know anyway , PMSL !!!! We are our own experts in this .

xxxxx

[supertrouper]

Don't forget that tamoxifen is said to strengthen our bones too! Positive thought of the day x

[Guest user]

Oh Lorna, your onc sounds like mine! My surgeon is optimistic (but seosibly so - she says she will give it to me straight - but at least she gives me positives to focus on) and my onc is doom and gloom.

Not oversensitive in the slightest. I dwell on every negative too - and every positive I have been given to hold onto has been blown out of the water (at least it's not in you're lymph nodes...no wait, it is - at least you don't have vascular invasion...no wait, you do). Each time I get what I see as bad news from the onc or surgeon I take 10 steps back and feel like I did when I was initially diagnosed. But I do ping back again.

You seemed chuffed with your results before - so I presume the surgeon was happy with the results. And no - it didn't get rid of the tumour BUT it was a large tumour and it shrunk it by a few centimetres didn't it? Only 4% of ER+ tumours have a complete response to chemo as opposed to about 50% of triple negative tumours - and even more difficult with larger tumours. If your tumour had only been 2cm it might have got rid of it all. And it went the right way - shrunk it rather than it not changing or even worse getting bigger, so any stragglers outside the breast will also have been responsive to the chemo. My surgeon was pleased with my pathology report and said that she gets reports that show no response or worse, progression, during chemo and that's not good news. She prefers oncs who do chemo first as it means they can monitor us better - and said that it's a relatively new thing and they never used to understand why people with similar diagnoses would have such different outcomes until they started doing neoadjuvant chemo and realised some people just didn't respond at all.

I've been silly and looked at my prognosis statistics online (don't really recommend it! The bottom line is that all cancers are different and most of us are more likely to get better than not) and for me, Tamoxifen gave me just as big an increase in survival as chemo. So, say if you had a 60% prognosis with surgery and radiotherapy only, but then an additional 10% from chemo and an additional 10% from Tamoxifen that would mean that 10 ladies out of 100 would not have responded to chemo but that Tamoxifen was their life-saving drug. I didn't realise that Tamoxifen is as effective as chemo. Suddenly the 5 years of hot flushes and mood swings don't seem quite as daunting (you can remind me that I said that in a few weeks time!).

It's all so horrible and scary and the unknown is just so difficult to deal with. I hate it.

[supertrouper]

Lorna - Chemo is bad enough but to be told that the results from having it were bad is even worse. Do try and focus on the positive news I.e. The clear margins. The progress being made with cancer treatments is very good and who knows what will be discovered as we continue on our paths through life. My onc told me that cancer was beginning to be as treatable as diabetes and we can learn to live with it rather than die from it.

Keep the faith xx

[Guest user]

Hi - Dito , i can't settle to read either , so much for my lovely kindle.

I went too see Onc yesterday . They had no results yet so i told them .He was dissapointed on my poor result from chemo ( and i needed to hear that )but said " at least they got clear margins"... He took me off the Letrazole the surgeon had started so i will be joining the Tam gang . Anyway , i pick up on every negative comment these days and seem to dwell on it . I so wish he had said nothing as i can't get it out my head. It was the "at least " bit. Grrrr. it's like i have been written off. I pointed out that it was suprisingly a Grade 2 tumour , i had never been told before the op , and he did say yes that it was less a threat ... I've decided that i want no info from now on as i regurtitate every word !!

Its bad enough that this disease has took away our "presumption" that we will grow old never mind professionals saying the wrong thing .
Rant over , i do recognise that i may be a TAD over sensitive !!! lol.

Katie - Rads not till 19th Dec for me

Take Care All xxxxx

[supertrouper]

Sandy - I have a stack of books that I thought I would work my way through whilst on chemo. Plus about 10 DVDs that I thought I would easily watch. I find it hard to concentrate on reading - hardly every put the tv on during the day and if I do then I just watch cookery programmes - not sure why because everything tastes like cardboard but looks sooooo good on the telly!

[Guest user]

Wow...hope you've got a good book LindyLou!

Has anyone else found they've read less since being diagnosed? I just can't concentrate. I used to love reading and have read maybe 2 books in 5 months...awful.

Katie, glad rads have gone ok and you're getting the strength back to be normal mum again. My rads planning is on Tuesday and I think I start at the beginning of December and have 3 weeks.

X

[Guest user]

Hi ladies - rads went well, all over so quickly, just have to lie very still for about 5 mins while the machine goes from one side to the other and buzzes a few times, you don't feel anything - was just a bit uncomfortable with my arm being still painful but it's for such a short time. Sandytoes, the journey door to door is one and a half hours each way, it's mostly the stairs and any slight incline when walking that really done me in today - my legs have no power in them at all !! Katie, so good to hear that you are now able to carry your daughter upstairs to bed - it must have been so hard, all I have had to worry about is myself as my family have all grown up, just frustrating when my 3 year old granddaughter comes round and I'm not the fun, running around and dancing nanny I used to be ..... Can only imagine how hard it has been for those of you with young children!

Xx

[Slendablenda]

Ah worthks - so lovely that you could carry you little girl upstairs.
Good luck with the rads ladies - I'm also hoping it'll be much easier to cope with than chemo has been.

[worthks]

How did it go lindylou? this is a walk in the park compared to chemo! First week all going fine - 5 down and 20 to go!
I am also delighted to say that the pains in my arms and legs are finally easing off. 4 weeks post last chemo and am on the right road now. My muscles are still achy but i walked up the stairs tonight carrying Chloe to put her to bed (we live in a town house and her bedroom is on the top floor!!)and I did so without being in pain! I did shed a tear afterwards as little things like this mean so much that we all took for granted pre cancer.
Lorna/Pinky Pam/Sandytoes - when do u all start rads?
lots of love to everyone
xx

[Guest user]

Good luck LindyLou!! How long's the journey each way?

Katie, how are you doing after your first week?

X

[Guest user]

Off for my first of 23 rads today ..... the travelling by train every day is going to be tough until I get some energy back in my legs, still going at a snails pace 😞

[Ninja]

Lorna, I showed the rope under my arm to the physio today and she said it was a fore-shortened tendon and that regular exercise and stretching will help it all settle eventually.

[Guest user]

Hi Lindylou

Thanks for your good wishes - have sent you a PM

Sooke

[Guest user]

He really only warned me of muscle pain , hope i dont get that . I read the SE's and i hope I DO get this one .......WEIGHT LOSS !!!!!!!

I am not that lucky 😞 lol

XX

[Ninja]

Sandy - OK so far; some hot flushes but no weight gain and no mood-altering.

My arm is still getting there but definitely not upright.

Rads coming quite soon, I believe.

[Guest user]

Blimey! That does seem a long way off. I start at the beginning of Dec, but 3 weeks only, so will be done by Christmas which I'm excited about as I wasn't going to be able to get away to see my family if I had had to have rads between Christmas and New Year.

I can't lift my arm right up yet either - it kind of reaches a perfect third reich salute.

Does Letrazole have any common side effects? Ninja - how's the Tamoxifen treating you?

x

[Ninja]

I started Tam in September; Oncy wanted to start me on it virtually as soon as he cancelled the chemo.

[Guest user]

Hi - I started Letrazole 4 days ago , so far so good , nothing to report on side effects . I was to get Tamoxifen but as ive not had a period for 2 years they eventually agreed that even at 45 i was post menapausal .

Did i say my rads are not till 19th Dec !!! was dissapointed they were so late . On the up side i am feeling physically better all the time so its maybe a good thing . I am going bk to work soon for a few weeks as i am really bored as well .

I canni get my arm right up yet , think i have some cording as it goes so far then i can feel 2 ropes under my arm . Hope it behaves soon .xx

Lorna xx

[Guest user]

PS - those of you taking Tamoxifen when are you starting? I'm starting this week. Eeeek!

[Guest user]

Lorna, I feel the same. I just can't concentrate on anything or motivate myself to do anything but am also v bored!! Am hoping I'll feel a bit more up for stuff after rads.

Lindylou - I've bought the 99.9% Aloe Vera stuff.

Katie - the expander's temporary so you could always have the tummy recon later on down the line if you felt up to it/like you wanted it? They wouldn't normally do it prior to rads as rads ruins the recon. They warned me about the temporary one being different to normal breasts and my surgeon was a bit against it - but I'm really happy with them as I've got 2, so it doesn't matter so much. They look pretty natural - just very perky! Looking forward to getting my nipples. I was planning on the tummy DIEP - but maybe I'll stick to implants. Not sure - and have a year to decide.

Congrats on finishing chemo Slendablenda! Fab!

BB - decisions, decisions....maybe your breast care nurse will be able to help? Don't worry about the General Anaesthetic. It's really not that bad. My first one was for my portacath at the beginning of chemo and I was terrified...but it was fine. The anaesthetists have all been lovely and you just drift off to sleep....

x

[Slendablenda]

Hi Lorna
I felt like that yesterday and the day before from the chemo. Feel a bit better today though, steroid buzz.
Don't forget you have only just had an op. You are going to need recovery time.
I'm going to be starting rads soon. Now I'm worrying about how I'll cope afterwards. Bit of a shock because I'm not normally like that, not usually a worrier..... oh well, whatever. I think it maybe because I've read so much about people expecting you to be "back to normal" once treatment has finished.
It's a mild, bright day here. Think I might just sit and look out of the window!

[Guest user]

See these clocke , so wish i could sleep for a day . Was woken with superman returning home at 4am !!!! His powers had obvously mal functioned as he was swaying a lot ??? lol

Am i the only one that is still struggling to get moving. I have no motification for anything , I need a kick up the a*** now i think. Its like i have forgotten what is normal. Hope i snap out of it as i can feel myself loosing it a wee touch 😞

Happy Sunday

xxxx

[Guest user]

Morning ladies 

Pinkypam - well done you, that's great news and I wish you a quick recovery.
Slendablenda - sorry to hear you have been suffering, I have also found the last one the hardest and no 'good week' either.  Hoping to have a little more energy for when rads start next Tuesday !
Katie - power port came out on Thursday and no they didn't sedate me this time, just lots of numbing in the whole area - I didn't feel anything other than a bit of pushing and pulling and there was only one cut this time where the port was, they didn't need to cut the neck again 🙂 I have bought some optrex eye wash for my eyes, it hasn't got rid of it yet, but it does make them feel nice and refreshed when you first do it.  Glad to hear the rads are going ok, are you going to just use the aqueous cream?  I think I will also try Aloe Vera gel too, I have been told I could as long as it is 99.9% pure and a few people on here have also recommended it.
Sookie - so sorry to hear about the recurrence while you were still on TAX!  Wishing you well with the treatment you are now on.  How was this discovered?

I was invited to a Halloween party tonight but I've decided to give it a miss - even though I wouldn't have had to try very hard at looking scary 😉

Xx

[BerthaB]

Hello All,

Pam Great news your back Home and everything went ok. Next step done too. No sign of Gremlin is great news !

Sandytoes. I will need Rads so no imediate reconstruction. My boob is a little bigger and droops more than the other since the gremlin invasion so it depends how much smaller they have to make it. Had 29 questions for the Surgeon when I saw him but still not enough ! Never had a General Anasetic either. Had a bit more of a look about for theraputic mamowhatsit. It is basicaly a bit of recon while you have your gremlin removed. congrads to you on the body hair....a further step towards "looking normal" which I know I crave for.

Katie - My hair has started to grow but my eybrows are almost non existant going to get some stuff in town tomorrow. Just struggeling for the name of it to write down has been mentioned on many posts so will look through.

Supertrouper - good luck with your next TAX assume your due soon
Hugs,
BerthaB

[worthks]

Lots of news to comment on tonight!
Lorna - great great news with your results, you must be over the moon. well done you.
Berthab - yeyyyyy - congrats on last chemo. Was a great feelng not having to go back for chemo this week (even though had rads!) hope side effetcs are minimal and even if there not, just think - LAST EVER ONES! Cant help with your decsion on the op, as I was only given the choice to have a masectomy but I hope you dont struggle too much. Just ask lots of questions to your surgeon.
Pam - great news with your op, so pleased for you and hope you recover really quick from op.
Lindy Lou - I am also still suffering with my muscles in legs and arms - its hell and each morning I wake up and move my legs praying they are better and still feel the same. How u feeling after the power port removel? Im having mine out next week - did u have sedation.
So Rads are going ok - first day was a bit scary - felt like I was walking into space! Its so furturistic but the radiographers were lovely and its a walk in the park compared to chemo. My brest area feels a little sore tonight but I am rubbing the aqueous cream in all the time.
I am so pleased you mentioned sticky eyes as I have that and had no idea what it was! Still also getting major night sweats
Hair watch - no eyebrows or eyelashes but hair is growing thick and fast. I had a huge shedding on top despite the cold cap but no more bald patches stll wearing wig though until I am brave enough to step out without one! am i meant to get the new hair cut??
Sandytoes - I did have a temporary tissue expander and although I am not upset with it - because I only have one, it feels so different to my natural boob, I kinda wish I opted for the tummy tuck reconstructon as I have one firm solid fake boob and one normal natural saggy boob!! But at the time just wanted the quickest recovery time and least time away from my kids.
SlendaBenda - sorry your feeling so poorly -not long now and then no more effects.
Have a lovely weekend everyone - we have a holoween packed party weekend!
Katie x

[Slendablenda]

Glad you are home so quickly Pam and WLE -Good news.
Lorna and Sandy, I haven't been posting much lately due to my side effects, but have read your posts and wish you well.
Lots of talk about hairy bits - can't join in with that -still no show here.
My chemo is now done. Just enjoying the last few weeks side effects before RADS. Have CT and planning appt. next week. Final stage for me as I'm TNBC so no tablets afterwards. My OH finding it hard to see me feeling so rubbish - so he gets cross with me! Hopefully it's just his way of coping...........?
Love to all. xxx

[Guest user]

Woo Hoo Pam , so glad thats u done now too. Great news it went well .

S-Toes - I have only the same exercises for all weeks... sore though still but he has warned me of a frozen shoulder if i do not do them !!!! its a thought.....but away i go again .

xxxxxxxxxxxx

[Guest user]

Oh Pam, that's really good news!! Glad you're out quickly too. Look after yourself.

X

[Guest user]

Hi girlies
Back home and feeling ok .A bit tender and tired but nothing too drastic.Everything went ok yesterday but when they went to put guide wire in by ultrasound there was absolutely no sign of any gremlin so had to go to x-ray where
they used the metal marker i had inserted before chemo started as a guide so happy days.Breast quite swollen and dressing not to come off till tomorrow so not seen scar yet but feel very lucky that i managed to get away with a WLE.
Thanks to everyone for all your good wishes its certainly gave me a boost.
BB- final chemo woo hoo its a great feeling isnt it.I know you still have all your side effects to come but trust me when you would normally be due next dose and can plan to do someting else instead it feels like christmas.
Sandy toes andLorna -hope you are continuing to improve
Love to all pam

[Guest user]

Yay!! BB! Chemo? DONE!! Brilliant!

I can't really help with the decision on the surgery as mine was one mx or 2!! Would they offer breast reduction on the other side to match you up? And would you mind being smaller? I don't even know what therapeutic mammowhatsit is... And if you had an mx would you get immediate recon or are you having rads?

Pam. How are you doing? Swimming around in a morphine daze? How long are you in for?

My body hair is sprouting back in full force. Have had to shave my legs and wax my upper lip!! loving having eyelashes and eyebrows (though this is still more stubble than proper brows). Have missed them... Not sure about head hair as did manage to keep alot with the cold cap - although roots are v grey and the consistency of my hair has changed alot.

Still feeling scared and worried but know that's natural. Full clearance arm getting a bit better. Must move onto week 3 exercises today... And chest area ok apart from when I do something that involves my pec muscles.

Hope everyone's ok.

X

[BerthaB]

Hello All

Sorry to hear some of you are feeling down, I think we all have our ups and downs and hide away, mine are at night so the kids do not see me. A good cry always helps and a good laugh with lots comedy channel helps me get out of it.

Pinkypam - hope yesterday went well and your well on the road to recovery.

I had my last TAX yesterday, now just waiting for the Tax truck to hit for the last time.
Was so looking forward to this poison... smiley, singing (badly) and did a little dance in the lift with Husband on the way up. Yes the Madness has come...

Decision on op next week. I will still have the full node clearance but the Surgeon has given me choice (Ahhhh)on the Gremlin removal: 1.Wide local incision. will leave a hole in the top of my breast
2.Theraputic Mamoplasti (spelling)- Will fill in hole with my breast tissue and make this boob a bit smaller.
3.MX.
They have said that due to the original size I may need further surgery if they can not get clear margins.

Anyone else who has already had surgery had a Theraputic Mamoplasti. Can only find a few references to it ?
Hugs to all,
BerthaB

[Guest user]

See u on the other side pinkypam .xxxx 🙂

[Guest user]

Hope it all goes well!! X

[Guest user]

Hi gals
Well spending my last night with the gremlin.Back to hospital for 8 oclock.tomorrow.Have to get a guide wire inserted to metal marker before op as they are unable to detect where tumour was without it.Good news but will bring back horrible memories of core boipsy.Anyway have lovely room with all mod cons so i think OH is quite looking forward to chilling out whilst im under the knife.Also surgeon said today that the blue dye they inject for sentinal node biopsy will leave my skin with a tinge of blue for 24 hours so he has been humming smurf songs all evening.Ayway best go get some shut eye .Love to you all
Mama Smurf

[Guest user]

Hi Sandytoes

Well my treatment now takes me back to the start really. I am having a regime of Gem/Carbo chemo two weeks on and one week off - probably until after Christmas. Then, as it stands at the moment, I will have surgery to remove what is left of the recurrence - this may be that I have the complete reconstruction that was already planned for the future- or a skin graft -will have to wait and see what the plastc surgeon's advice will be, and then finally rads to the whole area ,
phew!!
It has come as a shock as was still on TAX when the
recurrence appeared - but just have to carry on regardless!

Hope you had a better day today. xx

[Guest user]

Hi ladies 

NOOSHKA - your note mirrored exactly how I feel too!  I am 2 weeks post chemo and I struggle to walk upstairs, and getting dressed is a task and I have to sit on the bed to get my breath back afterwards, heart going 10 to the dozen !  Thanks for the advice Jane, it's good to hear that there is an end in sight.

Tomorrow I am going to have my power port removed, I can't wait, it has been a real discomfort for me, especially of a night time, with the port one side and my painful arm from ANC on the other.

PINKYPAM - good luck for Thursday, be thinking of you.
KATIE - I start rads next Tuesday, so keep me posted on how yours goes.  I would have preferred more time between chemo and rads to get some energy back, travelling on the train up to London everyday is going to be a challenge! but the sooner they start the sooner they will be over.
SANDYTOES & LORNA - sorry to hear about the pain you are in from the ANC, unfortunately i still get the pain but movement is great now, I had mine all removed back in June.  If you are offered physio, take it as this has really helped, but it still feels numb, heavy and as if I am holding a tennis ball under my arm ... But there's nothing there!!  I also had it drained twice in the beginning, so don't be frightened to have that done if you need it - it is such a relief, I haven't been that brilliant at doing my exercises either but I just haven't had the energy during chemo and laying in bed or sitting in an armchair all day probably hasn't helped! 

Does anyone know whether the hot flushes stop once chemo is over or is this what it is going to be like until after the menopause (I am 51) they are driving me mad .... Hot cold hot cold!

So a round up - 2 weeks past last chemo, aching arms and legs, tingly fingers, one black toe nail, no hair, no eyebrows or eyelashes, hot flushes, sticky watery eyes, breathless AND by the sound of this message feeling sorry for myself again.  Getting in a rut finding it hard to push myself to see people or even speak on the phone at the moment .... I am sure it will pass, must just take one day at a time.

Love to everyone xx

[Guest user]

Good news Lorna!! It's great to know that it's OUT now isn't it. Although can't believe you were dismissed probably with a 3cm tumour! Shocking!

Yup - new day today and feeling stronger although still very sore (but I think it's the expanders that are hurting me). Might even drag my sorry a*se out of the house today and have a wander into town and bat my eyelash stubble at someone. If only it would stop raining...

Pam's pre=op today? GOOD LUCK!

And Sookie - thanks for your note. Hope you're doing OK?? What's your plan of treatment now?

x