All the fives... Tamoxigang cancer support thread 55

[WhatWouldLeslieKnopeDo]

Welcome newbies and oldies to our 55th thread!

Our previous thread is here.

If you have any sort of cancer please feel free to join us. We are always happy to offer a hand to hold if you're waiting for test results too.

There are no stupid questions here, and there will usually be someone who can answer, or point you in the right direction.

Thanks everyone for being so kind. I'm sorry I can't offer any mutual support at the moment. I am having a major panic this morning. My lovely dh has taken our little girl to a birthday party (I couldn't face it) and I really am panicking and feeling so scared. Don't know how to make myself feel better.

Hi lilly. Weekly Paclitaxel does allow for hair growth from my experience and from what I read and was told by my oncologist. Maybe you won't be needing that wig after all!
Can I ask those who have finished their treatments and have routine scans and checkups, how soon after the rads ( or end of your treatment plan in general) did you go on to have scans to check if the treatment worked? I have been told it won't be happening soon in my case. How long did you have to wait?
Have a great weekend all.

Hi again rustcohle.. now that is one tricky name i must say:)
There is so much going for you now. Do not feel guilty if you can not do your normal stuff. That is certainly how family and friends can help. Your DH will be your friend in need especially with your DD. my advice during this crazy time is to try and keep distracted. Do you have a very good friend you can go out with, someone whom you can just be you with, no awkward silence etc? A walk on your own to diffuse some of that tension would be useful. It is ok to feel scared and anxious. Try not to read stuff on the net that is not a trusted source of information. I started keeping a journal as soon as I was diagnosed. That is one way to cope, but everyone is different.
You can come on here as many times as you need today and afterwards.There will always be someone to support you.

Rust your panic is understandable. I was in a car accident when pregnant with DS1 and my pregnancy hormones didn't make it any easier ... Nor did a lot of ill informed people - in particular some of the nurses on the ward - who kindly told me that my child would be damaged in some way by the accident (he wasn't, of course). Most people here have primary BC and get through treatment and are back to a "new normal" within a year. You will get there, one step at a time and the first step will be a treatment plan.

rustcohle a warm welcome and so sorry you have found yourself here. The fear, anxiety, panic are all part of the diagnosis but you have the added fear, anxiety etc due to your pregnancy and I just can't imagine how hard that is. I don't have anything else to add as to what has already been said by others other than a work colleague was in the same position but had a very good outcome and to send you a huge cyber hug x

Hi again. Well dd had a fab time at the party which was lovely to hear. Just wondered if anyone had experience of idc with lymph nodes affected where there was no spread anywhere else? Sorry I know I'm labouring the point but this is terrifying me. Also when my biopsies were taken she said she could see one of the lymph nodes showed thickening and this is the one the biopsy was taken from. I know there are loads of lymph nodes in your armpit so does that mean that she checked the others with the ultrasound and only one looked odd do you think? Sorry - clutching at straws.

Hi everyone.

FlyChickie I'm sorry about your mum. I'm in a similar cancer situation as I am also in my thirties (I'm 33) and have breast cancer with no genetic history at all. It's hormone receptive so I will be taking tamoxifen too.

helly hello! I'm ok, thanks for asking.

rustcohle glad your DD had a good time at the party. Re the lymph nodes and the ultrasound they checked mine at ultrasound and then took five out to check when i had my surgery to remove the lump - cancer had spread only to one of them. So far for me there is no talk of spread elsewhere but I'm having a CT and a bone scan this week to make sure. Hope you get answers soon.

Things moved a bit quicker than I thought they would and I got my surgery results when I went to have my dressings taken off. They found cancer in the lymph nodes but not further than the sentinel node, so that's good. But I'm starting FEC-T chemo this Thursday - which seems very soon but I feel good about just getting on with it.

How quickly did your hair start to fall out if you have had this sort of chemo? The leaflet says 2-5 weeks after first treatment, but I want to get a wig asap so I'm ready - mainly for DD's benefit (she's 6) as I realise it will be hard for her to have a mum looking different. Does anyone know of a wig shop in North London?! Has anyone bought one online with any success?

Hope everyone is having a good weekend. I really need to get my DS out for a walk but it's pissing it down with rain.

Hi rust
I'm glad your dd had fun at the party. Is she in reception yet or still in nursery?
There are lots of people on here who have had positive nodes and gone on to live productive happy lives and forget about their cancer. In fact they rarely check this thread because they are off doing normal stuff.

Ultrasound is a blunt tool for examining lymph nodes, so it is impossible to tell if only one node is affected. There are two main ways to treat positive nodes - remove some or all of them in surgery or treat by radiotherapy. I was actually offered a third option - go into a clinical trial and have no treatment, just chemotherapy and observation. I wasn't brave enough to go for that one, but actually it isn't as crazy as it sounds. There is an increasing body of evidence that treating lymph nodes does not increase survival and leads to increased side effects such as lymphodema.

I would call your BCN on Monday to ask more questions. Write a list if it is helpful. Results appointments aren't the best time to take in information if bad news is delivered. In fact I was so upset by mine that I was called back the next day. I wish I could wrap you up in a blanket and give you an unMNety hug. Honestly things will improve and do look back for Amberlight's posts. They do help.

Evening everyone. elmindarina I had fec t as well starting with the fec and my hair fell out exactly 2 weeks after the 1st dose but started to grow back when I switched to the T part. I now have a good head of quite thick but very short hair but it was growing throughout the T part of the treatment, I'm also having to shave my legs as well which isn't so great. I found with the fec bit that the side effects were there moreless straight away but the T part they took about 3-4 days to kick in. Had my last chemo 6 weeks ago and my energy is coming back slowly and pretty much all the side effects (sore mouth and a bit of neuropathy) have almost gone too. Good luck with it, I found it very doable and the thought was worse than the reality.

Thank you rovercat that's helpful to hear your experience - glad you are feeling better.

elmandrina sorry your joining the chemo club but anything to get rid of the bloody thing. I had a wig appointment last Saturday and think they are something you really have to try as I looked a right bugger in some that looked great before they went on I was crying laughing at some! luckily they didn't have to order in the colour so am going this week to get the fringe cut in. I also went for a Headstrong appointment where 2 lovely ladies showed me how to tie scarves, jazz things up and handy hints and tips. Well recommend it.

Thanks helly I though as much - I'll find somewhere local to try some wigs on. DH is itching to shave my head.

I'm going to have a PICC line too - my veins have always been crap. Hope you are feeling ok.

Thanks elimindarina i am not feeling to bad tonight so fingers crossed going in the right direction. although not very exciting for the kids as hubby been in work (my in laws are very good) it's been helpful to see that I am going to have to accept help getting kids to school for the 1st week after fec (other mums been so good offering) as I have been useless in the mornings x

Meant to say I am having a picc before next treatment, nurse asked when I said yes please she looked and said oh needle phobic, me "no crap veins ", after getting needle in she agreed a picc would be a good idea lol.

Thanks mysillydog she's in nursery at the moment in the school we're hoping she goes to in reception. She's a treasure. Thank you for your reassuring words and to everyone else. I hope everyone is ok. I have hardly eaten or slept since Friday and I genuinely feel like I'm having a breakdown. I don't know how to cope with this.

Sorry, I've killed the thread.

Afternoon all, it's been busy here!
We've been celebrating DS2's 10th birthday this weekend so just back from trampolining and pizza (I only participated in pizza!). We had a family "do" yesterday which went well, so the house is well and truly full of cake.
I have my PICC line being fitted tomorrow morning, 8.30am - perfect for the first day of term with 3DCs to get to 3 different schools . Luckily my DSis is a complete star and is helping in the morning. I have lovely veins (apparently!!) but the PICC seems easier, so I'm more worried about the dressings allergy...
I start chemo on Wednesday - I have docetaxil and "c" combined for 4 cycles - not sure if I've picked up if anyone else has/had that regime?? I've booked a wig appointment for Tuesday with DSis and DSIL coming to help. I'm wondering when the hair falling out starts as well.
rustcohle - I hope you are feeling a little brighter today? I cried almost non stop at diagnosis. I had days where I literally just blubbed from before I got up till I went to bed, I cried at my hospital appts, before my lumpectomy, before results, after results...... no one minds, it's just how your body copes and it wasn't something I could control. If I'm honest I'm dreading this week, but that's fear of the unknown, plus a lot of resentment over feeling physically fine, and deliberately having treatment that's going to make me feel awful and have to rely on other people!
I have ILC - invasive lobular cancer, so slightly different to IDC, and my ultrasound showed clear nodes so they only took the sentinel node but the SNB came back positive. I had the CT scan and bone scan elmindarina is about to have for full staging and it came back clear.
I have one blue/smaller breast now - DD (7) asked me this morning why my breast was blue - she had forgotten since last she saw me topless, so I think they forget very quickly what is going on. I downloaded the book "Mummy's Lump" for my 3 which has been very helpful and is frequently recommended here.
helly glad you made it through the first chemo and had a laugh trying on wigs - I hadn't picked up that chemo turns your wee red - glad I read that!
Hope everyone is enjoying the weekend

Rust- if you can't sleep then go and see your doctor. They can give you something to help if you want. This really is an awful time when you are waiting. Please phone your breast care nurse if you need to. Another option might be to use the helpline on Breast Cancer Care as although I haven't used it I know some others who have and they found it helped to calm them down and talk things through.

Helly- a Picc is a good idea. It means you can have all your bloods taken from there. I was so glad I had mine in. After the second lot of red stuff(epirubican??) my veins burned and were still sore for a long time after. The Picc stops this.

Elmandrina- good luck for Thurs. You might find you have minimal side effects. Drink plenty of water if you can. My hair started falling out just after two weeks. The bikini line went first though. My scalp started to feel weird- like I had slept on my hair funny. When it started coming out I went to the hair dressers who took it all pretty much off. I had my wig appointment in the hospital, although in the end I didn't wear it much- I just stuck to scarves. It really depends on your preference.

Lily- sorry to hear you have to change drugs. Fingers crossed that scanxiety will be over quickly.

Pepper- I started with Fec and had tax after. My hair started growing when I had tax so not sure about if/when your hair will go. I did lose my eyebrows and eyelashes then though. You shouldn't get red wee with tax- it is one of the Fec drugs that does that. If your wee goes red on tax you should probably let someone know. Make sure you have painkillers in- maybe get your doctor to prescribe codeine just in case you need it. I did need it but my friend didn't so it really does depend how you react. I didn't have the 'c' part with tax so not sure what that is. Maybe someone here will have had that combination. They are changing things all the time as new research becomes available. Good luck for Wed.

Ah, thanks speedy I thought the "c" (cyclophosphamide) was the last initial of fec! Originally they said I'd have EC then dropped the E. I shall make sure to mention my wee colour to anyone who looks even vaguely interested or perhaps just ask tomorrow when they put the PICC in. I just have ibuprofen and paracetamol in the house so I'll ask about something stronger as well.

That would make sense pepper. If they are dropping the 'e' then your wee should not be red. It's that stuff that would still make me feel sick if I saw somebody else having it!

I've not heard of FC rather than FEC or EC. Epirubicin does make your wee red and you have to drink loads to get it back to normal in 48 hours. It also causes hair loss (unless you cold cap). And I haven't heard of other chemo drugs with Tax but every Oncologist seems to do things differently.
I had 6 X Docetaxel in 2013. After the steroids wore off I had about three days with flu like symptoms but then started to feel better. I managed to get to work part time in Weeks 2 & 3 and to go away for the weekend for the last weekend of each cycle! It isn't fun but is doable (drink loads of water as that really does help).

Welcome rustcohle. I had a very quick diagnosis (within a week of seeing GP) and within a 2 week period I was at a hospital/doctor appt nearly every day either getting tests or starting treatment. I was absolutely terrified as had quickly worked out what it was likely to be but obviously they had to do all the tests before confirming diagonsis. I cried at every appointment I think! Then seemed to hold it together well for a bit but have dipped now and feel very down so really understand how you are feeling. I also have young children.

Having confused myself now, I've googled it - that combination is called TC (so original!) and comes with all the usual fun packed selection of SEs...

Sandwich I hope you're ok. I think this journey will be full of ups and downs. I think I've tired myself out through not sleeping for a few nights so just feel shattered tonight. Hopefully that will mean a better nights sleep... I'm also finding myself so clingy to my dh at the moment (not like me at all!). He's the only thing that makes me feel safe at the moment. How old are your little ones? What was your diagnosis if you don't mind me asking? How's your treatment going?