Jan 2014 New Year Newbies?!!

[ScrappyJack]

Phoned chemo unit and they've told me to ask gp for additional anti-sickness drugs. Waiting for call back by gp

[minig]

Maybe see if they can prescribe it for you today rather than waiting until next time. Hope you feel better soon. xxx

[ScrappyJack]

No they didn't. They gave me Dexamethasone - I think it's a cheaper one they give first in a lot of trusts as not everyone needs Emend. Looks like I do for the next cycle!

[minig]

Hi Pat, Did they give you Emend? That seems to be the anti-sickness med that people say you should ask for if the first lot aren't doing the job.

[ScrappyJack]

FEC 1 day 2, My anti-sickness meds unfortunately aren't strong enough. Will phone chemo unit when I've had a shower. Otherwise, no other side effects so far. Good luck to all who have treatment today. Pat

[minig]

Welcome Kitty & Rexi,

Sorry you find yourselves here - especially for the second time Rexi. Kitty I'm starting 6 x FEC the day before you. As Jaine has said some of the group have started and some are still waiting for their first cysle to start. We tend to chat more on the facebook group - to join just send a message via this forum to Jolou71 with your name and she will add you to the group. Looking forward to seeing you there.

minig (Nicky) xxx

[Jaine]

Hi - Gosh you have been through it.  You are very welcome to join us on Facebook.  Have you messaged Jolou she will add you.  Some of us have had our first chemo, and some of us are still waiting.  I get my first dose on Monday.  At the moment I am fine about it, but I am not thinking about it at the moment.  I am babysitting this weekend for my daughter so plenty of distraction. 

Jane

[Rexi]

Hello Newbies,

I was diagnosed back in May 2011 with grade 3, stage 2b Triple Negative BC (if i remember correctly - all the technical jargon has washed away a bit). I had neoadjuvant chemo with 4EC and 4 Tax, then lumptectomy and full ANX node clearance, infection with a week of hospital at Xmas 2011, loads of radiotherapy. I worked part-time through most chemo and again part-time through radiotherapy. 

There was a little hickup when a rogue cancerous lymphnode was found in June 2012, which was removed - and that was supposed to be it. We had a fantastic postBC holiday in Dec 2012 and life picked up. 

After a few niggles and several pushbacks, I was again diagnosed in Nov 2013 with a local recurrence in two lymphnodes. One interpectoral and the other one in the internal mammary lymphnodes. Its all a bit odd (hence the pushbacks) and I have yet to find anybody else on this forum who had the latter. 

I had surgery on 2nd Dec 2013 to remove both, which included even a piece of rib to be removed and unfortunately a nerv by my arm had to be cut.

The docs are quite happy that as a local recurrence I still have all the chances of getting rid of it totally and for good, but definitely need chemo to support that, therefore I ll be getting a port (again) tomorrow, 9th Jan, together with the start of my first 3-week cycle (of 6) with carboplatin and gemcitabine. 

During the chemo treatment in 2011, my main support network was my direct family ( husband, children - 11 and 8 at the time, our aupair), a few really good friends and the June girls on this forum! Only the June girls really understood the details and were there day and night. I am still in contact with a group of them.

Even though I am supposedly a veteran, the suggested poisons are new to me and I will have side effects, unfortunately it doesnt get easier, eg my veins are shot to bits, therefore I would love to join the Jan '14 Newbies, too :-).  

Rexi

[Jaine]

Send a private message to Jolou71 with your name on Facebook and your location and she will add you to our group.  Sorry you have to join us.

Jane

[Kittysoftpaw]

Hello, Ladies.

It's a shame we all have to meet like this, but can I join you please? I start FEC ( I'm sure there is a pun in there some where!) 16/01/14. I'd really like to join your FB page too if someone would be kind enough to let me know how.

I feel like such a child but I'm devastated.

Hugs to you all, KSP

[Mags1705]

That's great to here, hope you sail through it lv XX

[ScrappyJack]

Back from 1st FEC and feeling fine. My nurse was great and really made me feel like an individual. I've just managed a light lunch and no taste changes yet. Hope yours has gone well too, Pie. 1 down, 5 more to go. Best wishes to all.

[minig]

Good luck for tomorrow ScrappyyJack and Pie! Here's to tiny side effects and quick recoveries. xxx

[Pie314]

Aha! Finally someone with the same regimen. 🙂 I don't feel quite so weird now. Thanks. I start my first session tomorrow. Quite looking forward to getting started. Soonest started soonest finished.

[ScrappyJack]

Hi Joanna and Pie, thanks for the warm welcome.  PICC insertion went fine, though did take 3 hours! Not what I was expecting.  I have also had to go and buy a wheat bag as I need to apply heat for 5-6 times a day to my upper arm, to help my body accept the line.  Now on to chemo tomorrow.  Best of luck with yours, Pie

[Joanne1973]

Hi pie134, I'm not having the F. Just 3x ec and 3 docetaxel (which is the same/similar to yours). I think it's the standard of care that your hospital uses. Where are you having your treatment? I'm in Leeds and don't think they've used the F part here for a couple of years. There'll be some research somewhere to support it whereas some hospitals choose to keep on using it. 

I've just had my 2nd ec, bit rough with nausea and vomiting but on the mend again now 🙂

Wishing all you newbies all the best on your journeys, take it one tiny step at a time 🙂

X

[Pie314]

Oh sorry, I just saw your other post, you're having FEC-T. I seem to be the only person not have F. I wonder why.

[Pie314]

Hi ScrappyJack. You start chemo the same day as me. I am having EC-T: 3xEC then 3xT. I have a 60mm grade 2 IDC tumour and several positive nodes. I havent had my surgery yet though, it will happen after chemo so I am the weirdo wandering around with her tumour still hanging about!

Do you know what chemo drugs you will be getting? I am weirdly excited about starting chemo. I suppose it's because I havent had surgery yet; so far all I have been able to do to get well is change my diet and exercise more. I am looking forward to starting to actually get rid of the blighter.

[Jolou71]

Hiya Scrappyjack and welcome. Hope your picc line fitting goes well tomorrow. If you've been stalking the other threads like me you'll know that it's pretty painless. It's quite quiet on here as a lot of us are chatting on Facebook where we've got a private group going. If you want to join send me a pm and I'll sort you out. Either way let us know how you get on. Love Joanna xxx

[Lucy_BCC]

Hi ScrappyJack, welcome to the BCC forums where you will find lots of support and shared experiences, additionally our helpliners are on hand with practical and emotional support weekdays 9-5 and Sat 10-2 on 0808 800 6000 so please feel free to call

You may find the following link to further treatments information and support from BCC helpful over the coming months:

http://www.breastcancercare.org.uk/treatment?utm_source=Homepage&%3Butm_medium=help_you&%3Bu...

Take care
Lucy BCC

[ScrappyJack]

Just re-read my first post - meant to say saw onc on 28th November!  Also, only had sentinal node positive, but having chemo due to my age, followed by 10 years Tamaxofin.  Having FEC-T

[ScrappyJack]

Hi, New Year Newbies.  Unfortunately, it's time for me to join you.  I was originally diagnosed back in August, after finding a lump in July.  I've had a 26mm Grade 2 Invasive Ductal Carcinoma removed, full lymph node removal at the same time, and then had to go back in for the margins, where they found a little more.  I was originally supposed to be starting chemo at the beginning of December, but due to my consultant transferring me to a hospital closer to home for the chemo - and the referral getting lost - I didn't get to see the oncologist till 28th December!  By the time I got my pre-chemo appointment, they decided it would be better to wait until after Christmas.  Therefore, I will be starting chemo on 8th January, and a picc line fitted on 7th January.

I've been keeping track on the November Newbies and the December Angels, as well the New Year Newbies, but am now an official New Year Newbie.   Bit nervous, but am trying to stay positive - especially for my husband.  Hope I can offer as much support as I need you to give me - we'll get through this!!

[minig]

Hi Kristen,

Welcome to the group. We're all in the same boat here so we know exactly what you're going through. I was diagnosed on the same day as you and I was also told initially that I'd only need surgery & rads, but mine turned out to be grade 3 as well with micro cells in the nodes, so I find myself here under very similar circumstances. I also have two children age 7 and 3. I used the BCC book Mummy's Lump with my 7 yr old and he seems to be dealing with it very well. I've told him the lump has been taken away and now I just need some strong medicine to make sure it doesn't come back. He knows I'm going to lose my hair and is quite excited about my new wigs. I think you can order a free copy of the book on this site if you havent got it already (my BC nurse gave it to me). 

We've also got a private facebook group for the Jan Newbies - there are about 16 of us on there & we use it more frequently than the forum. Its a great support and we have a laugh. Only a couple have started chemo so far - I start next week. To join, just send a message to Jolou71 with your real name and she'll add you to the group. Hope to see you there!

minig (Nicky) xx

[Jo_BCC]

Hi Kristen,

Welcome to the Breast Cancer Care discussion forums, you've come to the right place for some good, honest support from the many informed users of this site.

While you are waiting for replies, I have put for you below links to some of BCC's publications you might find helpful. Also our helpline team are just a free phone call away, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2.

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/mummys-lump-bcc164

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/breast-cancer-your-child-s-...

http://www.breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/chemotherapy

Take care,

Jo, Moderator

[Spanishcarla]

Good to see you've joined the FB group - will chat to you there some time!

[marianneknights]

Hi Gloria

I spent this afternoon feeling more and more nauseous and even thought I might be sick a couple of times.  My daughter cooked tuna pasta bake for the family and I wondered if I would be able to eat it!  But it was soooo good and has totally taken away my nausea.  I think it's going to be the same as my pregnancies when I just ate to combat the nausea - only problem is I put on 4 stone!

My cold cap was also a pink one, attached to a machine.  I do recall seeing the word Paxman on it somewhere.

I hope all goes well for you and I look forward to seeing your updates.

HH x

[Guest user]

I'm about the same as you hardly hare. Had lump removed in therapeutic mammoplasty and snb on nov 26th,and had first of 6 FEC on Friday. Also just feeling bit lightheaded and strange,but nothing specific,but aware it's early days still! Had cold cap too. X

[Guest user]

Not sur what type of cold cap to be honest with you! Its like a pink cycle helmet!

[marianneknights]

Hi everyone

I'm just back home from the first of my 6 FEC treatments.  Feeling a little lightheaded and a bit nauseous.  I decided to give the cold cap a go and it wasn't too bad.  I'll have to wait to see what the results are like.

I had a lumpectomy and SNB on 11 November and will have radiotherapy after the chemo has finished.

I hope everyone has minimal side effects and comes out of the other end of this stronger and wiser.

Good luck

HardleyHare xxx

[Krisjam]

Ok, so Im new here. I found out I had cancer on October 28 and after many tests had a lumpectomy on December 23. Thinking that since it was stage 1 and no cancer in the lymph nodes that I was clear and would only need radiation. I was suppose to go back to work on Wednesday. Well after talking to the oncologist find out that because I'm triple negative and the tumor was a grade 3 they want me to have chemo for the next 4-5 months then radiation. Im scared to death. I don't know how to tell my kids (ages 8 & 4). All we had said is that I was going to have a sore arm because the doctor took out a spot in my chest. Now Im not going to have any hair and who knows how else I'll react. Sould I try to work through the chemo or just stay home? I don't know anyone with any cancer, friends or family. Of course they are all very supportive, but . . . Im hoping this group helps. Thanks for listening

[laine24]

Hi minig thank you for that have tried sending a msg to jolou but not sure i've done it properly! Well one down only 5 to go! x

[laine24]

Hi spanishcarla had first fec 1st jan went ok tho was surprised it was syringed and not by drip but given so much information may not have just taken that bit in.  Been fine even managed to go to pantomime yesterday and xmas decs taken down. I went to seroma clinic yesterday too but they didn't want to do it now chemo started as didn't want to risk any infection.  I tried the cold cap but don't really hold out much hope, was supposed to be changed every 30 mins but was left on for an hour and didn't feel very cold, then only left on for another 30 mins after treatment finished.  Will try again next time tho. x

[Mags1705]

Hi minig, Im having 6 x Fec, its surprising how many of us are alike, yes lv im on FB too xx

[Guest user]

Hi Gloria12. Glad it all went well for you. What cold cap are you using?. Hope your s/es are minimal. xx

[Guest user]

It was fine thanks,long day though,arrived at 10.30 and left at 5.30! Much of this time was because I opted for cold cap,which adds about 2 and half hours but will hopefully be worth it! Didn't sleep well,but had long lie in this morning. Had breakfast ok,and took Xmas decs down! Feel ok,but am spending rest of day on sofa! I'm sure it won't last this good! X

[Guest user]

hi still not sorted lol  ive tried add you dont know whats going on ..staystrong

[minig]

Hi Mags, Youre almost exactly the same as me. I also had my surgery on 29th Nov, grade 3, micromets in 2 lymph nodes but didnt require full clearance, and starting chemo on 15th Jan. Are you on our facbook group too? I lose track of the names as they're different on here! What drugs are you having? I'm having 6 x FEC.

[Mags1705]

,Hi Gloria12, Please let us know how you get on today, sending you hugs. Your story sounds very similar to mine I had surgery on the 29th Nov, Grade 3, lymph node clear I start chemo on the 16th Jan feeling nervous. XX

[Guest user]

Good luck for today Glora12. 

[minig]

Hi all, Welcome to all the new Newbies - We're growing in numbers now. Well I finally got a bit more info today - assessment on 14th & first chemo on 15th or 16th. They will call tomorrow to confirm. I'm pleased I can now make plans and have next week to do a proper handover with my business partner, and kids will be back at school & nursery. Strangely feeling much calmer now it's set in stone. Hope everyone else is doing ok.

KittyKat to join the Facebook group message Jolou71 with your name & she will add you. Look forward to seeing you there. I also have little boy who just turned 3 on New Year's Day & a 7 yr old, so can very much relate to what you say.

Xx

[Guest user]

Hi,you seem to be almost exactly the same as me! I had my grade 3 lump removed 28th November,all lymph nodes were clear but advised to have chemo to make sure I have the best chance if it not returning,followed by radiotherapy and then hormone therapy. My first FEC chemo is tomorrow,so obviously feeling apprehensive. I am 50 by the way. X

[Guest user]

Hi all. 

Tentatively wishing everyone a Happy 2014; I'm sure there will be good times ahead for us all and we will meet the challenges we face and come out the other side healthier and stronger for it.

 I've also now  joined the fb group but have yet to get to grips with how it works.  

Since my first post a few days ago I have had further surgery under GA to drain/clear an abscess/fluid under my armpit and the SNB site. The abscess burst on Monday evening.  Was discharged from hospital yesterday afternoon; First NYEve apart from my OH in over 30 years.

Anyway,now stitched & pumped full of antibiotics. Continuing to take orally until next week; hopefully on the mend, albeit with a further 3-4 week post -surgery recovery period.

Appointment with surgeon is on 7/1 and with onc 6/1 (daft, eh!).

Received a wad of info in the post from my BC Nurse today; quite a bit to read through...

Has anyone had their treatment plan decided following analysis by "Oncology DX"? If so, Was it done automatically by NHS ands what areas do you live in?

Has anyone input their histology reports into "predict"? Apparently its an NHS diagnostic tool that some  surgeons use to  help decide on a treatment plan, and anyone can use it... I may look into it myself over the next few days.

[KittyKat7982]

Hi everyone!

Looks like I'll be starting my chemo at some point in Jan, although no dates yet.  I'm still waiting for my results from WLE and SLNB on the 6th Jan.  But I've been told that because of my age (31) that I'll definitely be having chemo and radiotherapy.

I'm trying to stay positive, but also really really scared.  Not so much about the chemo, but what my future holds over all!  I have a little boy who was 2 last week, and he is my main priority.

I'd also really like to join your Facebook group too, please??

Positive thoughts for all xx

[Jaine]

I think we are all a bit terrified at first, but it seems to get better.  Each appointment you get a bit more information, and they don't expect you to know anything.  Mind I always think of questions, after I have left the hospital.    I got my dates today, so I am gearing myself up.  13th is my first dose.  How hard can it be?   Don't answer that question I don't want to know!  I am sure that someone will be along soon and will tell us what it is like. 

[Li-Li]

Hi Everyone, I have my first appointment with my oncologist on Mon 6th and not sure what to expect really. I had a Lumectomy in November and then went back for axillary node clearance on Dec 4th. I am expecting 6 sessions of chemo but that's all I know so far. Part of me is terrified at the prospect and part of me says bring it on, it must be done. I am pleased to find this thread of other people in the same boat as me. The boat has felt a bit lonely up till now!  I hope we can help each other get through this together x

[Jolou71]

Hiya all and welcome to anyone who has joined since I last posted. We're growing in numbers aren't we???? Anyone wanting to join the Facebook group send me a personal message and I'll sort it out. Staystrong did I ever get you sorted? And anyone else outstanding give be a shout. Been a rough couple of weeks so apologies if I've missed anyone xxx

[Guest user]

Oh Jess ,poor you.its even worse when you think things are going to be ok,and then things change.dont feel bad,you are allowed to be angry,your world really has been torn apart! Good luck with the fertility team,and tell you will get married,just a bit later than planned.i keep telling myself everything is on temporary hold,and the things I had planned for end of last year,and this will happen,just can't say when at moment. You are so brave not having reconstruction surgery as well at your age,I wouldn't be brave enough.i also have never gone on a forum until yesterday as talking to people about my feelings just isn't my thing! But it definitely helps realising you are not on your own. I start chemo tomorrow. Love gloria xx

[Katiecjm]

Hi I was diagnosed with Stage 2 DCIS in November had a WLE and SNB in December, results were good but due to my age (40) I am having chemotherapy followed by radiotherapy. I am seeing the oncologist on 9th and think that chemo will start the following week. I am terrified about the treatments to come but know that I need to do whatever I can to beat this. Katie x

[Mand]

Hi Minig and all. Just wanted to wish all you lovely ladies a happy new year and all the best for 2014. You may remember that I thought I was going to have chemo but due to the results of the oncotype test being borderline I am now having radiotherapy. I had my CT scan and planning appointment yesterday. It all went okay. Treatment is being delayed die to seroma but I start on the 9th. I know I am lucky but I have hit a blip. I am very emotional, can't sleep and just keep crying! It's really not like me at all and I really know I need to pick myself up. Today is a PJ day for me. Anyway I said I would pop in now and again to see how you are all doing. Sorry that I'm not feeling as good as I should be. Lots of love and hugs to you all. Mands xxx

[Lucy_BCC]

Hi Laine and welcome to the BCC forums

In addition to the support you have found here our helpliners are on hand with practical and emotional support on 0808 800 6000, lines are open 9-5 weekdays and 10-2 Saturday and this resumes tomorrow after the BH

You may find the following link to the BCC 'Treatments' information and support pages helpful in the meantime:

http://www.breastcancercare.org.uk/treatment

Take care
Lucy BCC