Starting chemo in March 2014

[LollyMum]

LOVELY to hear from everyone  So glad everyone seems to be doing okay. LOL about the hair coming back EVERYWHERE!  I seem to have everything except eyelashes and you know where!  My hair is coming back iron grey rather than the chestnut with some grey that it was before - but I'm so glad it's coming back that I like it!!   I've the oncology appointment this afternoon so I'll find out when/ if I can start radiotherapy.  I wonder why it is needed if we get clear margins (I can't help worrying all the time).  I've still got an open wound on my reconstruction which I wonder will mean delaying the start of the radiotherapy.   I saw the most awful picture of a girl who'd had the same recon and who was red raw from collar bone down to under her breast after radiotherapy - so that's scary. I wonder they carried on bless her. So it was good Debs to hear that you found it a breeze. Fingers crossed.   

Has anyone else still got chemo side effects?  I still get the hot flashes (and sounds like these will continue once I'm on tamoxifen) and also some slight vertigo at night. I'm now two months post chemo. I also am not sleeping well either Mel - so maybe this is normal post chemo. I've also been trying to get some fitness back - although nothing so keen as cycling! I've no longer got the horrible leg pain I had on Tax so going for walks a lot more. 

Stelwah good luck with your results - have you had these by now?  Hope all is going well in your healing too. Will you have to pay for private genetic testing or will NHS give you this?  Seems tough if the former after everything else. 

[Debs-]

Hi all, im doing ok ...finished rads few weeks ago now. That was a breeze compared to chemotherapy for me personally. I have my herceptin infusion today and continue to have that every 3weeks. I started tamoxifen in august and so far it is treating me well. I do get the hot flushes but had begun getting them on chemo. As I had mastectomy and nodes removed earlier in the year at the moment all thats left now us regular check ups, heart scans and mammogram in january. Also want to start discussing reconstruction . Have energy and eye lashes etc back now and I have hair on my head, about grade 2 all over.Still wear my scarfs as had long curly hair before and feel not ready to reveal my short hair yet ! All the best Ladies x

[Mel51]

Hi Lollymum. I had surgery on 5th August and am pleased to say that I had clear margins. Surgeon did a great job on the boob. Was a WLE and he managed to use some of the tissue under to breast to plug the gap. Now waiting for the radiotherapy to start, but got to let the recon settle for a few more weeks yet. My hair is coming back with a vengeance and it's everywhere!! Not quite as glossy as it used to be or as well behaved but it'll get there eventually. Have started on Tamoxifen and all is well except for the hot flushes, but I'm learning to cope with them. Biggest issue is not being able to sleep properly, it not sure if this is the tablets or not. Trying to do more exercise and have even bought a bike! Needless to say, after two hours on it yesterday I can hardly move today!! No pain, no gain, eh?!!

[Lovewine]

Hi lollymum, I had surgery on 29 th august and relieved to say I had clear margins, but have to have radiotherapy to start soon. In the end I didn't have to have the extra chemo as I wouldn't have recovered in time before surgery, I feel quite good now, although this week I feel about 90 ! Aching in legs and arms and general tiredness. Glad to hear you are doing well. I have some head hair growth , not much though! Am working part time which I have managed to do all the way through, which I found helped with trying to be normal !

[Stelwah]

Hi Lollymum. Good to hear from you. I had my mastectomy and reconstruction with an implant on Tuesday, first day back home today. Am doing well, plastic surgeon was great so looks good even though still bruised and bandaged. Had a sentinel node biopsy so they've only taken one lymph node out for now. Waiting on biopsy results for everything before knowing what comes next. Had a liver biopsy last week, so waiting on that too. Have also seen a genetic clinician, is chance I may have a very rare genetic mutation (called PTEN) so deciding whether to be tested for this. All still up in the air, so just focusing on one thing at a time - which at the minute is resting up after the surgery. Think it's likely I'll be having radiotherapy too.

[LollyMum]

Not much action on this thread anymore - which is understandable I guess. But I still wonder how everyone is doing.  

I had my mastectomy and immediate DIEP recon on 21st August and am doing well.  The new boob takes a bit of getting used to and of course my other one is about five feet lower down my body!!! Hilarious. But who cares because the tumour is gone (d.v.).   My breast surgeon said she got good margins on the tumour and in fact there wasn't much left, so considering the huge original tumour size I'm pleased. I had 31 lymph nodes removed and 3 were positive, which I guess I expected.  I will hear more when I see my oncologist at the end of the month. 

I'll still have radiotherapy to go.  Anyone else still waiting for further treatment like radiotherapy?

Chemo effects are gradually wearing off. I still have numb feet and fingers but the leg pain is no more which is great. I've no eyelashes but the leg hair is back (bummer).  I never did that shaving of the head thing, and had a few strands left before surgery. Weirdly as my new hair has started to grow these have come away and I've lost eyebrow hair now which I hadn't before. Odd this long after last chemo but nothing I can do about it.   

Would love to hear how everyone is doiing

[Lovewine]

Hi lollymum, glad you managed to get away for a few days!! I went for an ultrasound scan on lymph node and it turned out to be fluid- am very relieved, surgeon said my lump had shrunk well and referred me back to oncologist who is to decide on extra chemo, have rang numerous times and have been told I have an appt on Wednesday, but to take steroids and have blood tests just in case I have to have chemo number 7- not very happy I may be taking these unnecessarily! Surgery has been booked provisionally for 29th august, a week after yours!! The uncertainty is not helping the general stress!! Also I get giddy and dizzy and ladies on April thread have mentioned this too. Take care, Wendy.

[LollyMum]

Hi Ladies 

Wendy - good to see you popping in here too - but rubbish reason that you too have to have extra chemo.   
I am sorry not to have been on for a while. The anxiety of everything led to me ending up in a really black place, very anxious. Anyway we went away for a few days to the sea and had a really lovely break - and great weather. I even managed a few swims in the sea because we found a beach where we could park nearby and I could get into the sea easily (my legs are still quite bad as a result of the chemo).  We cut short our week away and came back for my extra chemo which I had a week ago now.   My neutropenic count was 8.3 before the chemo - the best I've ever had (usually 2.8 - 4.1) so I'm really glad we went away.  

I did ask about surgery at another hospital but lists are all full - so had the extra chemo and am now hoping to recover well before surgery in three weeks time (21st).  I'm having a DIEP - anyone else having that?

Can I ask you ladies does anyone else feel giddy/dizzy as a result of chemo?  I found a 2013 thread on here about this so I'm hoping that this is a side effect rather than anything more sinister. 

I'm not having luck on the hair front - still no signs of anything coming back which is great for the summer legs but not so great otherwise!!!  I'm also now wearing these condom type things on several fingers as my nails have started to come off (right at the base). My chemo has been really strong so I'm not surprised but it's yet another thing.  On the positive side since the extra chemo I can't feel any tumour at all.

Stelwah - I'm so glad the liver lesions may be something else entirely - I really have everything crossed for that biopsy for you. xx

Wendy - hope you see this and can let us know how your extra chemo went.

[SJB]

Hello Lollymum - remember me? We chatted when you first joined the forum.

Anyway, I just read your post and wanted to offer some suggestions here.

I really do sympathise with the surgery situation.  My mastectomy was booked for 4 weeks after I finished chemo (2nd April to 1st May), but then I got notified that my surgeon couldn't make the 1st May so it was rebooked for 9th May. They said they couldn't leave it any longer - same reason as with you - the tumour might start growing again.

So, as I see it, you have TWO options here - either have that 7th dose of chemo OR ask if the op can be done at another hospital, which you have the right to ask. I have no idea if you have any other hospitals nearby, but surely this is worth considering to avoid the hassle of having more chemo?

Anyway, I'm going to keep reading your updates now to see what happens, and I wish you all the best of luck with this. So frustrating!

By the way, I've now finished radiotherapy and started Tamoxifen last week, and I'm feeling great x

[Stelwah]

Hi ladies. So sorry to hear of your surgery scheduling problems. Have you been told they have to do surgery within a certain timeframe after your last chemo? Interested as my last chemo is end of July and not got a surgery date yet, know they are aiming for mid September. Is it ideally 6 weeks and no more?

Had 7 lots of chemo now, just the 1 to go - yippee. Been endless hospital trips at the minute. Since being told I have lesions on my liver, the radiologists have said the appearance of the lesions on the scan isn't 100% consistent with what cancer spread looks like, so I'm being booked in for a liver biopsy at the end of August when I'll have recovered enough from my 8th chemo. Keeping everything crossed for good news, in limbo at the moment. I had a bone scan on Friday, waiting on the results. Also seeing a genetic counsellor in August, in case there's something genetic that has led me to have two different types of cancer by the age of 37.

[Lovewine]

Hi lolly mum, I had to jump in from April thread after reading your crap news, I am also p....d off after seeing onc today too. I had been referred back to my breast surgeon 3 weeks ago as after having my 3rd Tax my lymph node under arm has swollen, well my letter of referral was lost, so onc furious today as now cost me 3 weeks and as I sat in his office he rang surgeon himself and got me in next Thursday , problem being because of delay I now have to have 2 further a Tax ( my last one should have been tomorrow!) for same reason as you, that it doesn't start growing again! We were planning a very much needed holiday too, but now can't go due to uncertainty of surgery and extra chemo, really deflated and worried now. So I sympathise massively with you, I think it's appalling you have had to cancel your holiday due to some one else's incompetence, we have so much stress and worry to put up with this kind of error just makes everything so much worse. Wendy x

[LollyMum]

Hi Ladies

Hope all is going well for you all.

I seem to be living in some kind of nightmare since "finishing" chemo on 3rd July.  From the very beginning my team at my hospital said I would have to have a mastectomy and reconstruction following chemo. I've had a good response to chemo to shrink the tumour (Tax).  However the plastics team at the hospital did not book me a slot within the 4 - 6 weeks after chemo finishes. So now the earliest they can fit me in is 21st August - which is 7 weeks post chemo.  My oncologist has fumed and raged as have I but nothing doing other than 24th July which my mastectomy surgeon says is too close to chemotherapy and I'll get rubbish healing.

Because of this total incompetence on behalf of the one hospital department failing to book me in I now face awful choices.  Straight mastectomy with no reconstruction on 11th August, or stick to 21st August and risk the tumour growing or - and this is today's development - have a SEVENTH chemo (and I'm on the highest dosage possible) to ensure my tumour doesn't come back before surgery.

I'm also hoping mad because we were due to take a much needed family break from Saturday  - one week by the sea in Dorset to try to heal our family after such a stressful year and now because someone couldn't be arsed to book me in properly we have to cancel and I have to go through yet another round of chemo.    I just don't know what to do. My family are tired and miserable; I'm so tired and my legs are so painful I can't walk far - so what another chemo will do to me is anyone's guess.  I just feel like I can't go on anymore.   

Has anyone else with grade 3 been given a longer gap than 6 weeks for surgery.  WOuld love some advice ladies.   LM

[Mel51]

Hi ladies,
Hope you're all recovering well after chemo. Where are you all at re. treatment plan. I had a final MRI on Friday and am meeting with my surgeon on Thursday to discuss surgery. Think it'll be a mastectomy and recon as I have small boobs 🙂 what should I expect after surgery? Will I be able to move? How bad is the pain? I'd rather know the truth, as people keep,telling me it'll be fine!

[Mysticalmoo]

Congratulations on last one! I had mine yesterday. Have allowed myself a week before I need to get going to I get ready for the surgical onslaught! Hope you feel better quickly and get your mojo back! I too have similar hair issues, had a fringe trim today but have a lovely monk patch on top...also am tall so hope it fills in quickly and no one will be any the wiser!
Rebecca

[Mel51]

Good evening ladies.
How are you all doing? I'm now day 5 after my final FEC and have hit the steroid dip and the acid reflux! Really feeling it today. On the good side it is the last chemo and my PICC line is out!! Not done anything today but cook dinner and feel really down about that, but just got to rest today mad tomorrow or Friday I tend to bounce back.
Looking forward to a week of "normality" after this before the surgical appointments start! Might even go for a little haircut in a couple of weeks as I appear to have a mullet growing at the minute with a bald patch at the top!! Good job I'm tall!

[Mysticalmoo]

Thanks for the interesting link Stelwah. It is a no brainer - I know I have to have it. If tamoxifen is causing the awful leg pains, I need to find an effective pain killer. I am a primary teacher and standing for 7 hours a day really isn't an option with the degree of pain I'm having. I am hoping it is caused by the Neulasta which should improve after my last injection next Thursday...

My surgery plan is confirmed and I'm not seeing surgeon again until my admission date. I am having radiotherapy so my consultant will use the tissue expander to hold shape through RT having spared the skin then it will be replaced afterwards with permanent implant. Will revert to LD flap if skin is damaged...

Good luck with your surgery naming. It is such a big decision and there are so a many opinions...

Take care
Rebecca

[Stelwah]

Hi ladies. Good to read about the different surgery options everyone is considering. Would be great if you can post what you all definitely end up having. Got 2 more chemo rounds left - 8 in total - then surgery time for me. Have you been told you're having radiotherapy after the surgery? Think they are deciding this after my op. Plastic surgeon has warned me that this can make the implant go hard, so would be likely to then need the implant replacing - if yes, said he would do any cosmetic corrections to the 'good boob' at the same time to level everything up.

Mel 51 - jealous of your PICC line coming out! Bet you can't wait. They need to design some nicer material sleeves to cover them up, may email one of the online bandana sites to suggest it.

MysticalMoo - Have a look at this link - my oncologist ran this clinical trial that compared taking tamoxifen for 10 years rather than 5...
http://www.cancerresearchuk.org/about-us/cancer-news/press-release/study-confirms-long-term-benefits...

[Mysticalmoo]

And regarding the legs that feel like they've climbed 40 flights... Yes I feel your pain. My pain kicked in week 3 of first round and have got steadily worse.... Copius amounts of nurofen and hot baths ease them but I am collecting stuff in piles at the top and bottom of the stairs to minimise my trips up and down....

Oncologist blames neulasta jabs and casually mentioned that it may be the fall in oestrogen levels which won't improve while I'm on tamoxifen ... FOR 10 YEARS!!!??? I am praying she's wrong!

[Mysticalmoo]

Hi,

Regarding surgery, I have seen my consultant as I have last chemo on Weds and surgery is booked for 30th July. Was originally told would be unilateral mastectomy and node clearance. But I have pushed for and finally got agreement for bilateral mastectomy so I should never have to go through this misery again.

He has said that he would be prepared to do a skin sparing mx and insert a tissue expander while I undergo radiotherapy. If the skin is unharmed then will swap for permanent implant. But if skin is damaged then can revert to original plan for bilateral LD flaps. This option means my initial surgery will take approx 4 hours and I will have something to show for it afterwards!

He reckons the likelihood of radiotherapy damaging the tissue is actually quite low but many surgeons don't like to do a full construction just in a case. This way he is not extending my original surgery by much, I will not have the trauma of waking flat chested and there is always the backup plan of the flap procedure.

Don't know if this helps anyone but I found the choices and information confusing and uncertainty raises my anxiety levels so everything seems terrifying! I feel so much better now we have a plan!

Rebecca

[LollyMum]

Hi ladies

Stelwah - you're so positive - inspirational. So relieved for you that the lung scan was clear. Good luck with the other scans. I think I'm going to ask about the injections to shut the ovaries down too - sounds sensible. 

Mel - I'm exactly like you - starting to really really dread the surgery.  8 hours!! I've already seen my breast surgeon, and she's happy to do either op my choice, so I've a provisional straight mastectomy on 11th August. Then I see the plastics surgeon tomorrow morning to discuss that option. I've not been offered the implant option.  
It's true that radiotherapy runs the risk of distorting the shape of the reconstruction. But they do do lots of these none the less. I am not sure why. I'll ask that question I think.   I hadn't thought about the preservation of enough skin to do the reconstruction - that's a really good point. 

Meanwhile my final chemo is a week away.  I have to say my legs are driving me batty - does anyone else's legs feel achey (as if they've climbed up 40 flights of stairs) all the time?  I've put on some surgical stockings I had left from the hospital to see if it helps my poor numb feet - seems to be working. 

Must go and pick up my daughter xxs

[Mel51]

Hi ladies.
Hope you're all ok as it's been a bit quiet on here recently.
Stelwah - sorry to hear your news and hope they get a plan sorted for you ASAP.
Are you all coming to an end of chemo? It's wonderful, but I've got surgery after this and am now allowing myself to think about it and I'm terrified. As I'm a control freak, I find the thought of an 8 hour op and waking up in pain with drains very unsettling, but it's not like I've got a choice. I've got the appointment with my consultant booked in for 17th July so will have his recommendations then.
Had a day at work yesterday as they were planning for next year and am totally shattered today. Up early as have lots to do before chemo tomorrow, but seriously tired. Will try and have a nap this afternoon as tomorrow is my last chemo and PICC line removal 🙂 can't wait.
Hope all is well mad hope to hear from you soon.

[Debs-]

Am glad you are feeling a little better Stelwah,wishing you all the best. Lollymum are you not having rads? I was adviced against reconstruction untill sometime after rads so had to have my mastectomy first.I know all cases are different though.

[Stelwah]

Lollymum - thrilled to hear how much your tumour has shrunk, that's wonderful news! My surgeon hadn't discussed a straight mastectomy with me, he has only really talked about having mastectomy with an immediate implant to be able to preserve the flap of skin, so that is what I'm due to be having in mid Sept. Agree sounds like the scarring would be better, but also agree that 8 hours is a serious operation - although I suppose there are also risks of having two separate operations to do the mastectomy and the reconstruction. Are you meeting your surgeon again to discuss?

[Stelwah]

Thanks for your kind words ladies. I saw my consultant yesterday, and feeling a lot better for having a good talk over the options. Got 2 more rounds of chemo, then breast surgery, then will be given injections to shut down my ovaries and hormone tablets to suppress oestrogen and - hopefully - keep the liver lesions from growing and spreading. My lung CT scan has come back clear and am booked in for a bone scan in a fortnight. A huge amount to take in and a definite shift of goalposts, but am sure my doc knows his stuff and had a number of weapons in his arsenal to start throwing at this hideous cancer.

[LollyMum]

Hope everyone is doing okay - we're nearly through the chemo which must be good news.

Stelwah you've been on my mind so much over the last few days - frightening news that you've lesions despite being on chemo. Fingers crossed (and everything else) for postives to come out of the MDT meeting. I hope they're prioritising you xxx

I've had some good news today in that I saw my surgeon for the first time since starting chemo. She's thrilled with how much my tumour has shrunk and says it is now totally operable (and it wasn't before apparently). It's disappeared from my lymph nodes and the tumour is a third (approx) of its original size so she'll be able to do a safe mastectomy. 

I can't decide between the straight mastectomy get all the cancer out - or the mastectomy followed by the reconstruction in the same operation which is on offer.  Part of me just wants to have the mastectomy then get on with my life.  The bonus of the reconstruction is that the scaring is less than the straight mastectomy. But I'm really scared about the 8 hours of anaesthesia I'll need if I have the plastics and mastectomy in the same operation.   ANyone any words of wisdom/ experience to offier?

[LollyMum]

Oh Stelwah I'm so sorry to hear your news. Yet more anxious waiting for results.   You're in my thoughts xx

[Ali24]

Stelwah, I'm sorry to hear your news. Hope you get a plan in place very soon and you get plenty support. Thinking of you and sending you love and hugs. X

[ProjectKylie]

Oh Stelwah, poor you, another hurdle to master.I do hope you're getting all the support you need.

Some of us use Facebook on this thread, contact me if you'd like to join us.

Stay positive x

[Stelwah]

Hi ladies. Hope you're doing well. Found out today that my breast cancer has spread to my liver. I had a CT scan of my lungs a few weeks ago as was having breathing problems, and radiographer spotted something suspicious at the bottom of the scan. Had another CT scan of my tummy area, and told today there are two lesions in the liver. Unsure of what happens next until the MDT meeting happens to go over my records and scans. Have been really upbeat and positive until now, and now feel completely deflated.

[LollyMum]

Hi - Re the head painting - what about little rabbits? Then you can say they look like hares (hairs) from a distance (ha ha!).

Well I'm about to have chemo 5 tomorrow.  Another one ticked off.  The hand I'm pleased to report is much better and I have new skin which is much less angry looking. The downside is that my oncologist is adament I can't have chemo in that hand, so chemo will have to be on my cancer side. Apparently it being on the cancer side is much less of an issue as I haven't had surgery yet. 

I have had the most awful aching hips and legs the last couple of days - which is odd this far on in the chemo cycle. And numb feet.  All chemo side effects as I'm on the strongest dose of the strongest chemo apparently. 
The good side of that is that my tumour has SHRUNK - and is nice and soft now. I'm so pleased as I've had no shrinkage much until now as you know. It's still not much but it's gone from 10 x 8 to 8 x 6 cm.   

I'm so pleased that these side effects are for a good cause. 

[Stelwah]

Lollymum - sorry to hear about your hand, hope the plastic surgeon can sort it for you. As if not got enough to deal with! Did you get the henna tattoo? I'm giving a speech on stage at a local Race for Life at the end of June, and wondering what to get the face painters to draw on my head! Welcome any suggestions!

[Debs-]

Sorry to hear that lolly Mum, sounds nasty. On tax I was only given anti sickness just before infusion, was not sent home with any like with fec.x

[LollyMum]

I should never think I'm doing okay. I've now got a nasty chemo extravisation (think that's what it's called) on my cannula hand. It's apparently where chemo leaks into the tissue during chemo. Looks hideous!  So now I'm seeing a plastic surgeon who's monitoring it all.  

Has anyone else got numb patches on their body - mine are not all the time (appart from my right foot) but I get these shivery feelings in specific areas. 

[Stelwah]

Hi Lollymum. I had no probs with sickness on Tax. On Tax, I was given ranitidine, dexamethasone, Ondanestron (just one day after), and domperidone. Still on all of these with addition of Emend now on FEC, challenge is remembering when to take them all!

[LollyMum]

Hi Stelwah

Thanks for the advice re "moving things along!"  Actually I'm alot less sick/nauseous on Tax so I might ask if I can drop the Ondansetron - good tip.  I have Emend (really needed it on FEC, but not sure about on Tax), Ondansetron and the "Dom Perignon" - surely don't need all of it.   I'll ask about the sachets too. I bought Movicol but that didn't touch it. Just seemed to resolve on day 6). 

I hope you're not feeling too rubbish today hun. I couldn't be upright days 2 - 4 of FEC.  Really thinking of you.

[Stelwah]

Hi ladies. Hope you are doing okay. Had my PICC line put in yesterday and just got home after having my first round of FEC, so will see how I fare. Doctor has given me Emend, so hopefully that should help with the sickness, along with the other raft of four drugs. Eating some bland food to be on the safe side, in case I end up seeing it again.

Lollymum - hope the constipation improves, this was definitely an issue for me on Tax. I tried Senakot, bran etc but ended up being prescribed some sachets to take. Things got - ahem - 'moving' generally 5 days after chemo for each of my four rounds, but made me feel really bloated and sluggish. Definitely raise it with your doctor - they said it was actually the Ondansetron tablet that causes it, rather than the chemo.

[Ali24]

Thanks Debs and LollyMum
Hoping it's not too bad. Didn't like the way FEC made me feel but kinda got used to it. Hope you both continue to feel better.

[LollyMum]

Hi Debs, Ali and everyone.

Hope everyone is improving from chemo 🙂

I've had a bit of a grim weekend - the most awful constipation which nothing touched. It's as if Tax freezes all the muscles inside. Ends of my fingers and toes are painful again this time too - but still prefer this to FEC.  Because of the aches and strains (pun xx) haven't really had any sleep since Thursday night. But feeling better today so looking forward to a better night tonight. Ali I've had leg ache just like a workout too  🙂 I went for a walk this morning and if felt good to stretch my legs, but gosh feeble! But I've found on Tax you can pick up really quickly.  

[Debs-]

Hi Ali im day 5 of my first tax..so far I like it better than fec.My arms, knees, throat and head ache today but its not bad at all, just feels mild flu like without the snotty nose.Just normal paracetamol makes me feel ok.No other side effect s at the mo and I had heceptin thurs and tax fri.The ache is like ive had a work out, not unbearable. 

[Ali24]

I'm having Taxotere on Friday along with herceptin any advice would be great. I've had 3FEC and wasn't too bad with side effects. Worried about the pains on tax.
Hope you are all doing well.

[LollyMum]

Good to meet others doing surgery first. 

Had chemo 4 yesterday - Tax. Really really tired today but eating okay which is good. I like Tax much more than FEC. I know I'll have pain from tomorrow but prepared. Just had my bone marrow injection.  

[Louised75]

Hi, I am having chemo first b4 surgery and an on FEC-t & colpcapping using the Digni system. I have had 3 FEC100 and 1 tax, hair has thinned all over and parting is wider than I would like but if I pin my hair back no one would know. I also bought a product called Toppik to disguise the thinning on top, it works a treat.

[Lovewine]

Hi ladies, I am like on April thread too with Rosie and just dropped in ! I also face same as Rosie, chemo first, mastectomy , herceptin , radiotherapy etc , etc!! And it is good to be in touch with other ladies doing the same, it does seem most have surgery first, do any of you know why it is that we have it the other way around?. It does seem like a long slog and I agree it's best just to focus on one thing at a time! I was told by surgeon at the beginning I was it have a lumpectomy after shrinkage as less invasive surgery, but when saw onc last week he said because I was small busted a lumpectomy wouldn't really work so be a mastectomy after all!

[LollyMum]

Good to see you on here Rosie - you can join both threads x

How are you finding it? HOpe all is going well.  Have you had chemo 3 yet (I have chemo 4 tomorrow)?  It's good to be able to meet others on a similar journey x

[LollyMum]

Hiya Mel

I'm impressed you still have hair after 4 rounds of FEC - go girl xx

I find it interesting that three of us on this board having pre-surgery chemo all have no noticable tumour reduction. So it must be something our surgeons do see - rather than a panic situation! I'm having recon in same operation too - provided I don't loose too much weight. On FEC I lost a lot, but on Tax I've put on 1.5 kg! 
I lost most of my hair on FEC one and all by FEC two. I'm thinking of getting a henna Tattoo on my head to last me over the summer as although people love my wig I'm not keen. Also I think the wig it to make everyone else feel better - and maybe if we have cancer people should know and be supportive of our look. Unfortunately I'm not young and beautiful but middle aged and ordinary! But I'd like it.  I guess I'll not have hair I can show people until Christmas, so a temp tattoo could be fun. 

F x

[Stelwah]

Hi ladies. How are you all doing? Those just started on Tax, how are you getting on?

Hi Lollymum - my doc booked in an ultrasound scan for me without me having to ask. Said they wanted to see if/how the tumour is responding as I'm now halfway through my planned 8 rounds of chemo. Got the appointment next week I think.

Hi Ali51 - Totally agree that you have to just face one step of treatment at a time. I've not read up on anything about radiotherapy or tamoxifen yet, cross those bridges when I come to them.

Ended up back on the ward yesterday, been struggling with breathlessness for a couple of days. Had blood tests, EKG and a CT scan but can't see anything that would affect my breathing. Nose and eyes just streaming, not had hay fever since I was a kid but wonder if this may not be helping. Thing that worried me was the doc said they were unsure of something at the very bottom of the scan, which had caught about a centimetre or so of the top of my tummy/liver while they were focusing on the lungs. They are booking me in for another CT scan from neck down to pelvis, so trying really hard not to worry and crossing everything they are just being thorough and don't think it has spread. Hoping the appointment comes through quickly.

[Mel51]

Hi Lollymum.
I'm also having chemo before surgery. It's tricky as psychologically it's such a long haul. Fortunately, that was the first thing my BCN warned me about. I'm due a mastectomy after my chemo (as MRI shows no reduction in size of tumour) and immediate recon. I find it much easier to look at it from a 'hurdles' perspective - I focus on the next big thing eg FEC 5 and 6. Then I'm also looking to get away for a week. Then I'll focus on surgery options, then the next thing.......
For me to look at the big picture in one chunk is too much for my brain and this method has served me well to this point. I also have the same attitude when it comes to hair loss. I have a mini celebrate when I get to a Friday still with my hair, but try not to get too wound up on if I'll have it in 6-9 weeks as a lot can change by then!
Difficult times, but there is always someone on here who is in a similar position who can offer advice.
I hope that you manage to get away after chemo as it does us all the world of good!

[rosie14]

Hi Lollymum I have popped in from the April board. I actually started my treatment on March 27th but by then you lot were on your second round so I joined the April thread!
I too am having chemo before surgery. I know what you mean when helpful people say I have a friend who had survived BC and is all clear now. Its really not helpful when you face chemo, herceptin a mastectomy, reconstruction and rads then a drug for 5-10 years!!!
Hope you manage to get your week away it will do you good to have something nice to look forward to! x

[LollyMum]

hiya Stelwah - good to meet someone else having chemo first.  I find this quite hard to deal with sometimes as people say "oh my friend had bc" but it always turns out they had surgery first.  I've just seen my oncologist today and my lump is still the same size - so I'm beginning to panic. I've had two rounds of FEC and one round of Tax. That said my breast, we both agreed, does feel different - more normal and softer. I hope that's a good sign.  
Yes - I'm having  a mastectomy and reconstruction as soon as I finish chemo.  So long as I've clear margins for surgery I guess they can get all the cancer out then. I'll also have lymph nodes removed. 

My Tax side effects were not nearly so bad as FEC, but that depends on your perspective. I have a real phobia about vomiting, so the other side effects are okay with me so long as I'm not sick!!!  My main Tax side effects have been, like you the most awful constipation for the first few days, gut inflammation from the steroids, awful nail pain/ finger pain too . Cut all my nails off thinking it was the nails but the fingers are still pretty clumsy and sore. And everything tastes mostly of nothing! 

We're hoping to get away for a week post chemo too - before surgery. I really need it 🙂 

Did you request the ultrasound - I really want one to see what's going on. LM x

[Ali24]

Stelwah

Thanks for that.  Havent actually tried it yet thank goodness.  One of my friends has bowel cancer and she was taking it so I will mention this to her.