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Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Bernie and Boob Buddies! Really glad to hear you're feeling more recovered now Bernie, I was beginning to get worried that no-one was posting, but I knew everyone was needing some recuperation time. Yes I'm not sure why your chemo regime is different to mine. I have a grade 3 cancer, 2.5cm x 5.5cm, plus two tiny lumps 3mm & 5mm in right breast only, HER-negative, no lymph node involvement and weakly positive to ER & PR. Also, I have no direct family history, so it's unlikely it's a gene thing for me, but I'm getting a test anyway just in case. They didn't recommend me have a mastectomy on the other side for precaution, so it sounds like you must have other risk factors. But it's worth asking about the chemo, even if your diagnosis is a bit different to mine, but I wonder if it's to do with lymph nodes - not sure exactly. I've already found the lower dosage a bit less exhausting and I don't need the bone marrow growth drugs now, which is better as I had some bad back spasms last time. I really hope your recovery time is something they can improve with better anti-sickness drugs at least, as you say it's really hard having so little recovery time. I don't know if I will need radiotherapy yet, so that might mean it's better to wait for the reconstruction. They said they would await the result of chemo and surgery before deciding, but I need to check in case they've changed their mind now. So many questions, must start writing them down for next appoint!
That's great you've been getting to the support groups and pampering session. I know what you mean though as my mum suggested it when I first had my diagnosis and I really wasn't ready for all that, the thought of telling people I'd didn't even know about it all. But actually, I found it quite liberating in some ways, being able to talk to people openly about it without the fear of bad reactions or unhelpful comments! There were some good stories and some not so good ones to hear, and I did feel a bit like I was at an AA meeting (not that I've been to one before!), but thankfully there was lots of "good feel" stuff too and their newsletters are great support. I also managed to get a free makeover from Elizabeth Arden set up, so looking forward to that, along with the hospital pampering session too!

We had a lovely picnic for my daughter's 2nd birthday yesterday, the rain held off until 3pm so not too bad! My mum made all the picnic and everyone else looked after the kids, so it was a relaxing day for me at least - not used to having that on kids' birthdays!! Felt shattered by the end of the day anyway, as sleep was quite disturbed, but got a better night's sleep last night at least.

The Facebook page is a great idea. I'm happy to set one up as it's easier for quick messages etc. I've got some wig pics I can add too!!

Hope all's wll with everyone. Speak soon xxx

Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Grrr doing!!!
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Sorry for all the separate posts it's because the last time I wrote a long one it didn't post! Forgot to say Flamenco that I hope you had a wonderful day celebrating your little girls birthday. How are you La La and all you other amazing ladies? Patricia did you get your margins results? I have noticed that some ladies on other posts have made friends on Facebook and also set up their own page (not quite sure how they did the page thing though?) I wondered if any of you ladies use Facebook and would be interested in going something similar? x
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Really pleased you enjoyed your support group Flamemco. In the beginning several people just friends trying to be helpful, were pushing me to go to some groups but I couldn't face it & felt quite irked at the time that they were all trying to tell me what to do! At the time I couldn't think of anything worse than sitting in a room full of people with BC! It was def my denial as I am now going to seek the groups out myself and I have my first complementary therapy session booked for Thursday. Hannah how are you? I hope you are over the awfulness of the hospital stay and are looking forward to Glastonbury next wk how lucky were you to get tickets?!!!! I have thought long and hard about this-I think you need to make a boob buddies banner then we can see you in the crowd!! xxxx
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hello boob buddies! Feel I have neglected you all. As said last time I posted the 3rd chemo had knocked me for six and it continued. After 2 weeks am finally feeling nearly normal. It's really annoying as I will only have one good wk before round 4. If I was due round 4 last wk I would not have been able to face it. Any way let's see what happens next time. Sorry to hear your news Flamemco but as you say you have a clear plan and know what is happening. I am having a double mastectomy (one is risk reducing as I am high risk) I still have to have the T I'm wondering why if you don't need to. I have to see I psychologist as a tick box exercise re the unaffected (as far as we know) being removed. Re the reconstruction I have decided to delay mine as will be having radiotherapy. Immediate reconstruction was spoken about but I think the better option for me is to wait. The cosmetic results are better apparently. Have received my gene testing appointment, scan and proposed op dates this wk. Have been in a dark place for several days hoping that what they saw on last scan was indeed bone overgrowth as they thought and not spread. The op etc would not go ahead if that is the case and having already had it cancelled once before I am so very anxious about mets, I know we all have these moments just praying it's ok as it can be.
Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi there again, not such good news today. They confirmed that the other two blobs from the MRI in my right breast were also cancer, so will definitely need a mastectomy. But I think after hearing everyone's stories on this forum and meeting more ladies who have been through this at the support group last night, I felt prepared for that result at least. The oncologist said I was very calm! I'm not sure I will be when it comes to the operation, but we will see. The only bonus is that they can give me a lower dosage of chemo now and I will only need the FEC part for 6 rounds (no T), as they don't need to shrink the lumps so much I guess. It's a bit frustrating as I could have had the operation before doing the chemo, but the end result is much the same at least. I will have an appointment to plan the surgery, but I wondered whether everyone is planning to do the reconstruction at the same time as the mastectomy? It makes sense to just have the one operation if possible. I hope all's well (or as well as can be) with everyone xxx
Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

How's everyone doing? Hope you're all recovering well. I've got my follow up to the biopsy today, so will hear if there's any changes to my treatment plan. Last night I went to a support group which has put me in a positive mood at least. The organiser had breast cancer (double mastectomy and chemo) 17 years ago and it never came back. So that's the kind of good story you want to hear! I had an aromatherapy session whilst I was there which was very nice too. So feeling more relaxed and ready for today's appointment, followed by the 2nd round of chemo tomorrow. I wore my wig to work yesterday and those who didn't know we're very complimentary about my new hairdo! My neighbours may be a little confused though, as they've seen me with shor hair, followed by a wig and then a bandana in the past few days. I really must get round to telling them what's going on, though they've probably worked it out! Looking forward to a little do for my daughter's 2nd birthday this Saturday. My mum's doing all the organising, so hopefully won't be too exhausting for me. Good luck everyone for this week's events... Xxx
Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Hannah, really glad to hear you're out of hospital. At least it was easily treatable with antibiotics, it does seem strange to be in hospital for a minor infection, but of course they have to be extra careful as it could turn to something worse. I hear most people have to go to hospital at some point with chemo, so I will be prepared! I will definitely give the support group a try then. I will also mention the cough again next week if it hasn't gone, but I think as long as my blood count is ok (will see on Tues), then all should be well. I hope your OH can get some support, in some ways I think harder for those close to you than it is for us. They want to help but don't know what to do or say sometimes, and end up worrying a lot. I think my OH tends to busy himself with "doing" things like the gardening, work, childcare etc., but not so keen on talking about the serious stuff! That said, he's very good at helping me laugh at things like the hairloss situation, and the kids make it easier too as they keep us both smiling.

I do enjoy my flamenco classes, it's the one kind of exercise I enjoy keeping up! But I probably won't manage it much in the next few months - just on the good weeks.

Hope everyone else is coping ok and getting through the week. Xxx
hannah203
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Meant to say flamenco I have been to some BC support groups they've been fab its good to meet other people and talk about your experiences. Also ask your chemo ward about your cough, its better safe than hospital xx
hannah203
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi ladies

Wow flamenco dancing sounds fun thats great you made it. I struggle at the best of times to want to be active, now each time I look in the mirror I look more like a blob of mayonaisse!!! Flamenco the T part is really different many people online seem to tell horror stories of T its just all together different. Its all rubbish 😛

Bernie your ordeal sounds horrendous!!!! Are you feeling better now? Your daughter sounds like a star, I hope her school will apply for mitigating circumstances with her exam? I can't believe the hospital didn't have any beds. Shocking really.

I've been released so was only in 2nights thankfully. I am on antibiotics and have been told to go back should I feel unwell again they said that they may have to lower my chemo dose next time. My OH was great she stayed with me entertaining me both days, but she is not coping well at the moment as she is carrying a lot of burden with the responsibility of it all. Shes on the waiting list for some counselling so I hope that can help. My manager even came to visit me in hospital with magazines and snacks, I really felt silly as didn't feel really unwell just a temp & sore throat - not something you'd usually be hospitalised for, and certainly sounds nothing compared to your SEs Bernie. I came home and my OH and housemate have disinfected the place - door handles and all. It was very sweet of them. The food in hospital has improved since I was last in about 4years ago though.

Thinking of you Bernie xxx
Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Bernie, that does sound like a dreadful experience and I can't believe they couldn't get you a bed in the hospital. I was told that if you have an emergency, you just turn up at A&E , show your HEAT card and you will be seen straightaway. But I guess the reality is if there's no bed, there's nothing you can do! I'm so sorry to hear that your daughter is having to cope with so much in the middle of her A'levels too, but it sounds like she is a strong person, and it's great that she has an unconditional Uni place - they don't offer places like that unless they know you will do really well (so I'm sure she will breeze through!) I must say in some ways I'm very glad my daughters are so young, as they can't possibly understand it all and they don't have the pressures that older kids have to go through too. But thank goodness you're well now and the nurses have been so supportive - I think they're really fantastic at times like these. Do you know why you had a worse reaction this time though? I wonder if they got the dosage right? The only thing I know is that they work it out on your weight so as long as they weigh you each time, there's no reason why they shouldn't get it right (but maybe it's more complicated than that!) I do hope that's the worst of the symptoms over and you can recover now. I wonder if you will be onto the second part of the chemo next time, if you're having FEC - T (I've got 3 rounds of FEC and 3 of the T). But that said, I know they have to up the steroids for the T part, so it may not be any better! Mmmm....best not to think about that yet! I do hope things settle for the weekend and you can get plenty of rest. Hope you're feeling better too now Hannah? I know I'm feeling at my best right now as I even managed to go to my flamenco class last night (hence the name!), you just have to enjoy the good days and bear the bad ones it seems. Let's hope we never have to go through this again! Big hugs to boob buddies from me too! Xxx
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Try my post again! Sorry to hear about your OH's brother in Law Hannah I would struggle what to say also, I do keep reading wonderful inspiring stories though. Also sorry to hear you are in the hospital and hope you are much better and home soon know what you mean about hospital noise I didn't sleep a wink when in. I have struggled this time, not an infection but bad reaction constant vomiting, couldn't keep water or meds down and my migraine was unbearable. Was going to be admired in the early hours Tuesday but they rang back to say no beds so doc came to see me changed my antiemetic & pain killers, Gp & DN visited later on & changed meds again. I have had 4 follow up calls from chemo ward so can't complain about the care but the rest has been horrendous. More settled now managed to drink properly & eat something Wednesday. Been horrible experience for my daughter who is in the middle of A levels & had to sit one on Tuesday after being up all night with all the commotion, poor girl was so upset about me. Her dad let school know as I was worried she would be upset in the exam, they were supportive thank goodness. They must wonder what kind of family we are as she was very poorly herself for 2 years right through her GCSE's! However she did amazingly and has her unconditional uni place now without knowing her A results. She had talked of deferring the place but told her my illness is a blip in my life & she has to carry on with hers so place all accepted now & accomodation booked phew. Pleased you are all is liking your wigs, love mine! It helps to not have the self consciousness of wearing one. Hope support group went/goes well Flamemco. Big virtual Hug boob buddies! And also to your OH & family Hannah xxxxxxx
Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

I had some antibiotics a few weeks ago and the cough didn't clear up. I rang the chemo nurse and GP and they both said it was viral, so will just have to wait til it clears up. The nurse said it may take longer to clear up because of chemo. Hope the antibiotics work for you LaLa, shd do if it's chest infection. I've been wheezing a bit but no phlegm at least. It's hard not to worry though!
La-La
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

I had to get antibiotics yesterday for a bad chest too (normal temp though)
Worried about being admitted as it'll freak my son out (my mum died last Sept in our local hospital of pneumonia.. he was in tears last night saying he'd made me sick and was it pneumonia!!)

Any coughs/colds take your temp and call chemo nurses. Get antibiotics if it goes anywhere near your chest. I feel better today already.

Need a nice warm spell of weather though. My house is old and cold! Had heating back on for 2 days!!!
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Grrrrr write it again I mean!!
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

I just wrote a massive post and received a message to say what should have been here isn't don't have the energy to right it again!! Hope you soon better and home Hannah. I have had a similar horrific experience this time xxx
Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Hannah, just found this advice about white blood cell count, which may be helpful https://www.oncologynutrition.org/erfc/eating-well-when-unwell/white-blood-count-diet/
No doubt they will give you plenty of info at the hospital anyway x
Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Oh that's bad Hannah, I keep getting worried I will need hospital as I've had a very bad cough which won't go away, I hope you don't have to stay long in hospital - sounds like you need those industrial headphones, they should provide them like they do for the MRI scan! My hair has been coming out quite gradually thankfully, so I haven't tried the wig to work yet. I'm half excited, half nervous about the idea! But I think I will definitely wear it at the weekend even if my hair is still ok by then, as it will help me get used to it.
I'm planning on trying out our local Breast cancer support group on Monday, they meet once a month and have various activities like yoga, dance, aromatherapy etc. Has anyone tried their local one yet? Might be a good way to meet a few people going through the same thing.
Hope you get better soon Hannah - eat lots of iron rich food, that may help too (hospital food isn't the best - you might need a few home-cooked meals brought in!)
hannah203
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hello ladies

How's the hair getting on flamenco?

Lala I have had EC and tax too I am on the tax part now. How have you been finding chemo? Hopefully not as bad as you imagined. How are you getting on with breaking bad?

I have been admitted to hospital with a temperature - one of my white blood cell counts is low so I'm on the IV antibiotics. Cannot sleep as the machine makes a whurring noise despite having foresight to bring earplugs with me & having my own private room! I have to pee into a jug to monitor input vs output.... My glamorous life everybody 😉 but honestly it could be worse so I'm taking it in good humour.

Hope the chemo is being kinder to you ladies much love xxx
Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Good to hear the wig went down well La La. I just bought mine today and OH thought it was great (he came along to appointment), though he preferred the long curly locks which look nothing like mine - far too glamorous!! Just got home and brushed hair, lots came out! Got wig in nick of time, might be wearing it to work by tomorrow...could be very strange. Hope the chemo went ok today Bernie, no doubt you will be sleeping it off in next few days. Hope you all have a good week x
La-La
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

My friend had secondaries too. Liver.
Hard to know what to say when docs are all doom and gloom but you then read about 3 diff cures in one week!
Guy in Italy removed a terminal patients liver to do RT whilst he was still open on table tgen popped it back in after.. cured!
Now has 5 more lined up.
Wish we'd be less silo'd globally about cancer research. Frustrating

The other amazing news reports are with the immune boosting treatments announced the past 2 weeks too.. but with £150K pricetag for the treatment it is just ridiculous.
Pharmaceutical companies try to make tgeir money back over too short a period of time (I guess they are worried another treatment will pop up to replace theirs.. but who can get £150k approved??

Apparently my EC and Taxol treatment is very very old/established now. I'll take what I can get. But do think more focus needed on secondary. That was what the 'C Word' was supposed to help raise awareness for.
Nice to hear of rapid progress, but pricetags need to come 2nd to people's lives.

Sorry, went a bit Ben Elton there!

So proud of you Hannah. Literally young enough to be my daughter. I'd be very very proud if you were mine xxx
hannah203
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hello Ladies glad you're all feeling fit and fabulous.  Flamenco it's great you're feeling more confident about the hair loss.  To be honest, I was so nervous at wearing wig out at first but no one can tell (even though I think it's so obvious) it makes you confident.  Quite a few cancer nurses etc have thought the wigs were my hair... I was thinking, this is your job you should be able to tell the difference!!! Haha.

 

I went to a look good feel better course it was great I would really recommend it.  I wear make up but have never been taught how to put it on properly and it has made me so confident, now on my bad days I can make myself feel  bit better about myself and know I don't look silly 🙂 and who doesn't like freebies!!  You get a sack of makeup to take home with you.

 

Had some sad news this week, my OH's brother in law's cancer is now secondary, there are a few options for treatment but no cure Smiley Sad feel like I should know what to do/say but I don't.

 

Glastonbury should be good thanks ladies, I will refrain from rolling around in the mud!! I have to have a blood test before I'm allowed to go.  But I'm staying in the disabled campsite so hopefully it will be a bit more sanitary and I will stock up on anti bacterial wipes and handgel!!!! xxx

La-La
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

All the best for Monday Bernie.

Have a great picnic today Flamanco... bit more my pace than Glasto for me right now! Brave Hannah! Watch out for infection though sweetheart! Mud and portaloos particularly days 7-10 (week 3 I felt pretty much normal, blood count was back up to mormal)

Wiggy had first proper day out yesterday at my son's football league awards.. like you Flamenco I cannot believe how natural it looks. I caved and went for one very similar to my original bob, but this looks like I have just had a very very good haircut! Fringe and brilliant 3 tone highlights! Everyone complimented it, thise that did not know even said my hair looked great! Son is happy as he does not like folk knowing. He told me off for talking about it to a woman in a shop (I'll tell anyone! Embarrassing mum! I like to tell women to check their boobs! Think it sinks in more coming from a bald bird! But I need to be more sensitive around him (11)

Went to neighbours for BBQ last night, thought I'd stay 10 mins after the long day out but stayed til 10pm and had a lovely time.
Her son is off to the Somme and I managed to track down not only where and when her great grandad was killed, but found tge exact place on a memorial where his name is commenorated, and her son's trip is taking them to that particular one so he can go see it and get photos etc! (72k soldiers are commemorated on it!) Also found a site (thegreatwar,org) that we printed off an official certificate fir him that she can now frame.
Really great but poignant night.
Took my mind off me which was lovely.
(Exhausted talking to footie friends about it.. first time I'd caught up with them but bore myself now!!! 😉

Sun's out.. I'm off to donate a load of garden stuff to an old woman whose garden was wrecked when the Thames flodded last year, my gardening gang on Facebook are doing a bit of a Groundforce rescue for her. (She'd only asked for a few shrubs for her even older neighbour, we've all gone bonkers and are doing both.. it is going to be amazing.
Feel good factor 10!
Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

I will definitely be trying out the Lookgoodfeelbetter workshop, especially when the eyebrows go. I went for a wig-fitting on Saturday and was amazed at the natural look and feel of the wigs, so feeling much more positive about the impending hair loss! I found two that look like my hair, might have to go with my daughter's request for long hair - "mummy I like your hair long!" She's always asking me to wear dresses and make-up, so maybe now's the time to start painting it on a bit more (out of necessity!) Glatonbury would be great, I've been a few times before but don't know if I could handle the crowds now - will be watching it on TV! Good luck with your next round Bernie, maybe half way through now then? Planning a picnic in the park today (daughter Maisie insists!), weather is looking good x
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Right back at you boob buddy!! Glad the experience with the young people team has been positive so far Hannah and that you are feeling ok. Lucky you getting Glastunbury tickets, really hope you have a fantastic time! Just thought I would share this link with you ladies you may already have it http://www.lookgoodfeelbetter.co.uk
Hope you are all ok and have a good wkend boob buddies! I am brazing myself for round 3 on Monday xx
hannah203
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Morning boob buddies!

Good luck with your biopsy results flamenco its horrible to be in the waiting room again. Its disappointing to have plans change if you're planning a certain surgery in your head. Like the other ladies I've heard lots of people talking positively about their surgery. I'm sure your team will help you feel comfortable with what's best for you and lots of options out there for you.

Bernie the Young Adult unit was ace they gave us (me & my mum) loads to do whilst having chemo it was so chilled I loved it. They've referred me for my free human hair wig paid for by the teenage Cancer trust which will be such a treat to get.

Now I'm on tax I'm having nurses coming over to give me injections which is a different experience. I feel much more myself on tax (not spaced out, not depressed) but achey in the body... Going to Glastonbury festival at the end of the month, I'm seriously worried about my achey body whilst camping he he.

Glad everyone seems to be having a fab response to chemo 🙂 congratulations ladies we're doing great xxxx
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

I feel the same La La, I know we are all different and have different types etc but I too would struggle at not having surgery and I am praying CT scan in July doesn't throw anything else into the mix that means I can't have op. I would feel the same about a no op option even with good chemo results that suggested an op isn't needed,
La-La
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Thanks Bernie, good to hear that from your fellow boob bud. I spine to a lady who had one at Christmas amd she said the same. Just warned me not to overdo it when home. She came home early but regretted it. And says the physio is really important, must do it!!

Thanks Flamenco. That has reassured me, I may as well have it just so I have a choice.
I don't know how I would feel if they said I had an option for no surgery! Feeling a little Angelina Jolie about Eric and Ernie (my tumours), not sure I'd sleep well wondering!

Plus I'm right up for a tummy tuck and boob reduction time for christmas!! Always wanted one, careful what you wish for eh? Maybe I can get a nose job whilst under as a 3 for 1 offer??

Night night Boob Buddies!!!
Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Thank you for your kind words Bernie. You're right it's a real roller coaster, so will try not to worry yet. But it's good to know that the mastectomy isn't so painful and I know they can do great reconstructions these days. I think I was just holding onto the hope of avoiding a mastectomy, but will have to take it as it comes. Im sure you must have gone through some very difficult times knowing that you will need a double one, but I guess you just have to cross that bridge when you get to it.
Hi LaLa, the marker procedure was better than the biopsy, as there was no prodding needed. It's a tiny titanium marker (size of half a paper clip), so no real pain. Also, the radiographer said that there was a new trial about to start where chemotherapy was working so well that it often completely got rid of the cancer and no surgery was needed at the end. But we're not able to join that trial yet, and it may not suit everyone I guess. Interesting though, as I did wonder what the need for surgery would be if the chemo had destroyed all the cancer cells anyway. It does at least make me feel more positive about the chemo and how successful it is. It will all be worth it in the end....

Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi La La I am in the same situation re oncologist suggesting surgeon should put markers in but surgeon agrees with me re mastectomies. Glad the bowels are ok so far!! Love the boob buddies name we should make are own boob buddies group!! X
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Flamenco, it's all a roller coaster isn't it with different results and plans. I know it's easier to say than do but try not to worry too much and take each day as it comes. I am having mastectomy double in fact. When I was in hospital there was a lady in to have a second mastectomy 3 weeks after her first and she was doing marvellously. She said she recovered very quickly and that there had been very little pain. I still see her at chemo & clinic appointments and she is still going well. I know it's all a lot to take in and we all have days that feel worse than others. This forum is really great for support and info. Take care x
La-La
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

PS: started cycle 2 yesterday and not taking Omeprazole or Co-Codemol.
Lovely normal bowels!!! Ahhh! 🙂

Also taking one instead of 2 steroids to see if that reduces my day 5/6 crash last time (apparently common come down from steroids)
I will let you know if it works!!

Big virtual hugs boob buddies.
And saying a prayer for you all xxx
La-La
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Flamenco how did the marker procedure go?
Is it similar pain to biopsy?

My lumps are shrinking so fast from chemo that onc says I need markers inserted if I am to have option of lumpectomy after chemo... but I think I want double mast and recon, just want rid. Male Consultant seems to agree.
Female Onc is pushing lumpectomy and RT. I am not a fan.

I don't know what to do!
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

I wouldn't worry Patricia you won't see the oncologist until they know exactly what your results are. The oncologist will then be able to plan the right treatment for you. It will all happen quite quickly from then. Take care x
Patricia11
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Bernie i am still with the Breast Surgeon and waiting for results now to see if he got clear margin. So i do not have any date yet to see the oncologist which is worrying me at the moment
Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi everyone, I went to have a marker put in today. They also had result of MRI scan and found two tiny blobs. So they had to do a biopsy of both blobs and put in three markers. All a bit unexpected but I will find out the biopsy result in 10days. Just when I thought the waiting was over here we go again. But they said I will carry on with chemo, but if the other blobs are cancer I would need a mastectomy instead of lumpectomy. Trying not to worry yet, but it's hard not to expect the worst! Added to that I've been having terrible back spasms last day or so, side effect of bone marrow growth injections apparently! But nurofen seems to be holding out now at least and only one more day to go of injections for this round. I guess we have to expect the unexpected and just focus on the end result....
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Grrrr annoying spell checker overwriting words again sorry!
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi oh Hannah I am sorry you didn't have the news you wanted after your scan. However, it it fantastic that you were assessed for progress so early on and that another plan is in place. The CT picked up a thickening on my bone too. Get you getting younger by the day! What a brilliant service they are offering to you, I am a SW and the team I work for only goes up to 18 that may change in the future I believe though. Would love to hear how you get on with that.
I'm so glad (you know what I mean!) La La and Hannah that you have experienced the bowel movement issue as I was scaring myself!!
I'm with you with the toilet trauma Hannah I found myself screaming and then dreading the loo! Funny how they bleeped out a n a l!!! Fortunately it is a letter better at the minute!
Flamenco like Hannah I am impressed with you getting into work I would only manage a max of 10 days a month!
Hope everyone else is ok xx
La-La
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Oh Bernie.. with you on the bot pain! Constipation to start thanks to Ondanestron an co codemol, swiftly followed by ring of fire when I stopped taking them both!! Lasted several days, I have a fissure already so that joined in and scared me when it bled quite a bit...but I stopped the Omeprazole and now normal systems have resumed! (Til Thursday cycle 2 and it all starts again! Not taking co codemol or omeprazole this time to see if tgat helps!!)

Hannah, I live Berni's advice to you. Can't put it any better.
Sounds like you will get a lollipop after your next treatment at this rate though!!! Did make me smile.
hannah203
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

They bleeped out a medical work! Meant to say: - a n a l fissue
hannah203
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Bernie
No question is too personal!! And yes I had the razorblades / glass sensation (I think I have post traumatic stress as a result as I am now scared to do a poo!!!!) it is because the meds make the poo very hard and its painful to pass and I had some blood when wiping & doc said it sounds like i have an **bleep** fissure (posh word for a cut bum hole) which reopens if I forget to take my laxatives. You can get some over the counter or from your gp. I asked mine about cream she said creams won't help and there's no infection risk. I know other ladies have hemmaroids from pushing too hard with constipation so that's another thing to consider but I don't have experience of that.

Thanks for your kind words Bernie all you ladies have been wonderful to me too. Unfortunately not the best news today but not the worst either. EC isn't working so I am going straight to Tax & herceptin this week & scanned again after 2nd round to check its working this time. Onc said my boob tumour is not round its like a cloud shape and the main centre of it and the lymph tumour have stabilised/not grown but some of the nodules from the main tumour have grown slightly. Also CT scan showed a thickening of bone which they are not concerned with but have advised a bone scan to double check.

In good news I now have a teenage cancer keyworker (I am 24 still considered a teenager by hospital terms!!) And she thought my £20 wig was my real hair which is great. I am going to try having chemo on the teenage ward to see if I like it better as there's WiFi, sky tv etc. Also a childrens cancer social worker (I keep getting younger!) is coming to my house to talk through any grants I can apply for as a young person and I can also apply for a free human hair wig. So there's been some positives from today too.

Hope work goes ok flamenco I couldn't be at work during this too many thoughts & emotions going on... and I can't imagine how tired you must be I can barely manage retail therapy without needing to collapse on sofa in PJs after 😉
Xxx
Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Bernie, That sounds very unpleasant. I had some constipation with my first round so far, but thankfully not painful. I think it's worth checking with the chemo nurses to make sure there's no infection. I''m sure there's some kind of cream or maybe antibiotics to clear it up quickly hopefully. I'm in work this week but already feeling exhausted, will do short days at least. Hoping the tiredness gets better soon, at least I have a break from the steroids now so that may help. x
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Hannah glad you had a lovely weekend with your mum I bet she was relieved to see you. All good with the mutual in law meet too!! Hope you go on ok with Onc appointment please try not to worry you are having one of those wobbles again waiting for results. Whatever the outcome of your appointment you will deal with it your positivity has picked me up severely times in my darkest moments. The appointment will confirm the right plan is in place and adjustments made if needed. Dont think of prognosis deal with the here and now. I have not asked those questions as I am not able to yet. There have been some amazing breakthroughs in cancer research this last week including breast cancer which is brilliant news. Sending you a big virtual hug xxxx
This is a little delicate question but here goes! Has anyone had any issues with pain passing bowel movements in that it feels like passing razor blades!?! Can't work out if is due to the chemo making my bum sore and it's hurting due to a nappy rash type thing or something else (sorry for the graphics) it's bit hard to see own bottom lol been using sudacreme but no difference. Been scaring myself with dark thoughts about it as you can imagine!!
Take care Hannah and if you feel up it to let us know how appointment went then we can keep supporting as best we can xxxx
hannah203
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Bernie I sent my mum the selfie she said it helped and was not as shocking as she expected.
I've had a busy weekend and my mum met my OH's parents for the first time today (we've been together for 2 years) which was nice and everyone got along!
Knackered now.
Seeing onc tomorrow I'm feeling anxious about it even though I haven't been worried until now. Have been thinking about prognosis a lot & trying to be realistic and not negative but I feel like realistically my prognosis is negative with my age counting against me, so it's hard not to be negative!

Hi Jill sorry you have to join us here but the other ladies are fab I'm sure you will find lots of support. Lots of people have found out about me some people who I would have prefered didn't know but people talk which will never change (and I haven't been afraid to tell some people "its none of your business!").... Please don't keep it from those closest to you, you need your support network through all of this xxxx
La-La
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Jill

I have an 11 year old, and I had planned to keep it as quiet as poss ad drip feed him info until I absolutely had to say something (ie surgery or chemotherapy).

He had other ideas though!

 

Initially I told him I just had a cyst that needed draining (to explain why he could not jump all over me after the biopsy.)

But then he decided to sit on the stairs and listen when I had a conversation with my dad about it! (the shut door must have been a giveaway!)

 

He was crying and upset that I had 'lied' to him... and was worried obviously.

I had to correct his belief that  '50% of people now survived cancer' (a fact he picked up from the TV ads... so did not realise he thought there was a 50% chance I was going to die!!)

Had to educate him that breast cancer is one of the most curable forms, up around 98% if you catch it early. Which we did.

 

I thought I'd have op first but I'm having chemo first because one of my 2 lumps is G3 and HER2 positive (you'll become an expert at these terms!)

 

So I have simply told him:

1.They are giving me medicine to blitz any stray cells and kill the cancer off

 

2. I get new boobs for Christmas!  (He likes that idea, mine are huge and I had been thinking about a reduction! Careful what you wih for eh?)

 

Because I was very positive and made jokes about it my son is actually doing well.

He did not like seeing me wiped out for 2 days after chemo (days 5 and 6 were my tired days)... it was the first 'visible' sign of my illness; but I said that the worst of it is being a bit tired and constipated for a couple of days, then I actually had nowt to complain about, I've had worse hangovers! (seriously, I have. It's nowhere near as bad as I had imagined!)

(PS: Only 2 weeks after first chemo both my lumps are both noticeably smaller already! Oncologist says approx 1cm smaller! So it works!)

 

This is a brilliant website, I do not know how I'd have coped without it. Brilliant having folk who are going through what you are going through, and also ladies that are already through out the other side. You can say what you want, you can have down days and we will understand, and you can have dark humour and we will also understand.

 

Your family and friends will struggle with their own emotions and worries, very hard for any of them to say the 'right' thing. Everything sounds like a platitude. Be patient;)

Prepare to be surprised though.. folk you expect to be great may be rubbish, folk you had no expections of may turn out AMAZING (my neighbour had my son over to hers for dinner every night for a week when I first had chemo.. I had no idea how much that would help!)

 

Personally I got so fed up of the 'Oh Nik I am SO sorry, poor you' repsonses that I stopped talking about it on the phone and banged out an announcement on Facebook telling people not to feel sorry for me, but to check their boobs instead. That worked.

 

Once I got through the 'waiting room' bit (which was awful, lots of tears at bedtime!) I now see this as a weird blessing. Has taught me now to take my life for granted, and next year once I am over the op I am downsizing my life, changing my job, and spending more time with my son! (I am a lone parent and a chronic workaholic, and I don't care what the 'specialist' says, I am convinced stress has a part in this. I think the trigger was my mum dying last year.Twinges happened a month after but GP dismissed me)

 

 

For me this is a beginning. I sound like a right hippy.. I'm far from it, but I do believe there is a lesson in everything. It has brought me closer to my family.

'We all have 2 lives... the second starts when you realise you only have 1'

Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Jill, I know just what you mean about wanting to keep things private. I didn't want to tell my dad at first as his father had just died the same week, but all things considered, he took it well when I did tell him a week later. Also, I felt well enough to go into work today and having just started chemotherapy on Wednesday this week. Even though i only wanted my immediate team and managers to know about it, still wasn't easy having just those people asking how I am and one manager has a rather loud voice! But I'm quickly realising that I won't be able to keep it quiet for long, especially if I lose my hair. It's hard having to tell people, but I've found that everyone has been good at passing on messages to others when I've asked them and also (trying) to be discreet! It also means that you get lots and lots of offers to help, which I'm readily taking up, as I have two young girls (aged 2 & 6). I think once you've had time to take it all in and you know a bit more what to expect, it should become easier to tell close friends and family. I wasn't quite ready to tell my 6yr old, but I only had a day's notice before going into hospital to have some lymph nodes removed, so it was all a bit rushed! That said, she has been fine with things and asked me lots of questions which makes it easier to talk about too. Good luck with things and take your time about telling people - just make sure you get all the help you need. Xxx
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hello Jill I am so sorry you have had to join this not so exclusive club and I am sorry you are experiencing the mix of horrible emotions each one of us on here has and still do on and off. The time of diagnosis and the wait for a plan is the most horrific time, it's the not knowing what comes next and it all being out of our control I think. We go on overdrive and panic about everyone else too. I have a child sitting exams at the minute and after my diagnosis it March she was my first thought; when to tell her what to say etc. In the end she took the news as well as could be and is getting on with her life as she should. My OH says very little he comes to appointments when he can but doesn't ever speak! He believes all is going to be just fine a bit of denial I think as I have had and I think it is a coping method. I don't have my parents any more, I have a sibling who had breast cancer 10 years ago and is doing absolutely fine. We live 300 miles apart but she is my rock. She told the family members who needed to know for me and that made it easier for me. I know what you mean about complete strangers knowing your illness I felt the same. Only my immediate family and close friends are aware of my diagnosis. I don't know if you work if you do, you have rights over you tell and don't tell there. I have asked for privacy in that only my managers and the team I work in are aware, I felt my team needed to know as they will be picking up all my work and I know how stressful that is to do. They have been really supportive and and protective of me bless them when other colleagues etc have asked why I am not in work they have not disclosed anything.
Since my diagnosis, plans and the diagnosis itself changed a few times and I was in a very dark place as every time I had an appointment everything seemed to get worse. However, I have now started treatment and that has seemed to pull me together a bit-not all the time I have my wobbles frequently. I have had a biopsy followed by a sentinel lymph node biopsy which found 4 of the 8 nodes removed had cancer in them and that then changed the original diagnosis and plans. I have not had my 'big op' so to speak yet as I am having chemo first. I have had 2 out of the planned 6 sessions so far. I have not asked about prognosis I know I have a lobular invasive type that is a provisional grade 2 I know that this could change after my op when another biopsy of the tumour and lymph nodes (that will all be removed) is taken and will deal with that then. I do not know the stage I have had CT and bone scans for staging but haven't asked the stage as yet, I know the scans were clear other than something on a bone that they are not worrying about too much (unlike me!) they originally said they think it a bone over growth that is not unusual but are repeating it in couple of months.
I am sorry to go on but was just hoping to try and help you feel a bit better about things. There is a lot of information and support on this site and I think you will find it helpful. Please try to relax and ask as much or as little as you want to know from your breast cancer nurse and team as well as on here as this is the site the professionals recommend. Take care Jill and speak soon xxx
Jill1998
Community Champion

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi everyone,diagnosed yesterday and looking to talk to people who understand.Becoming apparent that the people closest to me and going to struggle to understand and really don't know what to do or say apart from ridiculously trite comments.Feel she'll shocked was given so much information yesterday.Lumpectomy booked for 24th June and then radiotherapy then who knows what other joyful experiences I have to come will find out more when further results are back.Feeling really upset that I will struggle to keep this private and that random people will know my personal business.Don't want my son or elderly father to know so struggling to pretend all ok.So many practical things to sort out as well.Would be nice to communicate with people who understand.
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

apologies for the predictive text making it seem as though my grammar is appalling!!
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Oh Hannah well done on tolerating the MRI which is something I didn't and am still really annoyed at my send for and that was with the so called relaxation meds! When I saw the Onc this wk she mentioned a repeat CT in July for them to look at my back again she was referring to something they saw on last one that they said at the time they weren't too worried about. I have been worrying and panicking about that now and hoping it is nothing. It confuses me as to why it's not the bone scan they will look at this on but suppose it means if they can see it on a CT as well as check everywhere else at the same time it is one less scan and exposure to radiation. The various medical staff are getting frustrated with my veins now took attempts from 4 different people to get the canula in for last chemo so they are thinking I will have a picc line in next week. I've improved on the Gollum look chopped off the longer straggly bits so head easier to manage but hate the mirror! Have you sent your mum that selfie yet?!! Have a great time when she comes to visit, sure it will be quite emotional for both of you. You are not based not too far from me being in West Yorkshire.
Hope everyone is doing ok. Anyone have any interesting plans for the weekend? I'm getting bored now xx