CANCER SUPPORT THREAD 58 - New thread, new year, but the lacies are still here! Please join us if you have any sort of cancer, or are waiting for test results

[WhatWouldLeslieKnopeDo]

Happy New Year! may 2017 bring health and happiness to us all

Welcome to oldies and to newbies. If you've just been diagnosed then this is the place for you. And if you're waiting for test results then please pull up a chair. We will hold your hand while you wait, and hopefully we will be able to send you on your way soon enough. If it isn't the news you hope for then we will be here for you.

Our previous thread is here

Following on from royalmama's suggestion (see, you're not just famous for typos!) I have compiled some of the excellent advice from the previous thread and I will post it below. I've divided it into sections to make it a bit more manageable. Please give me ideas on how to make it better for the next thread! :)

flippy just popping in - I'm certain they told me that there was no point doing BRCA testing on my tumour as lobular cancers weren't BRCA related so it wouldn't show anything they didn't know about it.

Well done on the photo shoot Argy, hope the pics turn out brilliantly. Going, all I can say is that I hope you're getting some rest and you get some answers soon. Happy belated birthday Chewing. I asked for my reports - like Argy, I want to know everything. And happy birthday to Leslie too. Balkan, a 'few' days feel like a very long time when waiting for results - have a hug instead of a slap. Pepper, I have ductal, but from reading some more, HER2 positive isn't associated with BRCA.

Thanks for scar advice. I will keep up the massage and moisturising. I was feeling better over the past few days, but not good today and back on all the painkillers, which aren't entirely working.

I met the oncologist today. Long appointment and quite difficult. I did agree to three cycles of EC and then weekly taxane, but on reflection, I don't think I'm going to go ahead with the EC after all. He said weekly taxane is an acceptable option, but he was keen to add something else; after thinking about it, I can't go with it because of the risks and side effects. There's no robust evidence but he said that single agent taxane might reduce the benefits of chemo by a small percentage, but who knows?! Not filled with confidence when he said that the F of standard FEC doesn't really help or make a difference and they'll stop giving it soon! So why are they still giving it now?? I know there's no way of predicting side effects, but I can't be out of action for several days a week, even if it is just for a short time. I already feel I'm being a shitty mum, and I also need to work as much as I can. My friends are being wonderful, but I have no family nearby, and most of the time, it is just me and DS. They don't offer GCSF injections either, and I can't risk being hospitalised with infections. I know that there's still a risk with weekly treatment, but it is lower.

I can't automatically have a port either - I can have a PICC, but I'd much prefer a port - so the only way is to pay for it privately, or take part in a trial (which is intending to prove that ports are the best option!! The irony...). I have a 50/50 chance of being randomized for a port, but with the luck I've had, I'm expecting a PICC.

Not an entirely satisfactory day.... Hope the rest of lacies are doing ok xx

Oh Flippy how frustrating 😔 For one thing I'm sure you're not being a shitty mum. I think your DS needs you to have the best care you can right now so that you're there for him for the longest time. That might include putting yourself first sometimes - as a mother I know that's virtually impossible but even so. Sending you a big hug.

Leslie I hope your appointment went well.

Hang in there Balkan. Thanks for the hat tip Grismo!

Wishing everyone the best day possible.

Just dropping in to post headwear suggestions - bamboo is v soft .

I liked headwear that added a little fullness so had some pleating etc ,the lack of softness ( lack of hair!!!) is a big factor .

www.wigs4u.co.uk/pages/headwear/index.asp?material=bamboo

www.patra.com/Products/TBN/perfect-pure-silk-turban-hat

www.suburbanturban.com/winter-hats.html

To everyone waiting for results and feeling awful- be kind to yourself .Other days will bring better times . And will get us to the end of February !

There are some fabulous looking hats and turbans there sunny - good work!

Leslie I hope you are ok after your appointment, do post when you're ready.

Wishing everyone well. Be kind to yourselves and try to continually build things into each day that bring you joy and peace

Thinking of you all .Hang on in there .Sending love x

Hope all lacies are doing ok.
I am currently trying to get referrals to units that have clinical trials in the hope of finding something that may help me. It's very difficult
Will read back and catch up soon

chewing - a master of understatement . I'm rooting for you and visualising you being accepted on a trial .

Hope our lovely lacies had a good night .And that if not ,a better day awaits .
These dark days of February don't help .

Hello Chewing,
I used to work for a pharmaceutical company. if all else fails write to the CEO direct...worth a try.
Also did you see this story?
www.bbc.co.uk/news/uk-england-nottinghamshire-38575256

Thanks sunny and lumpy
I hadn't seen that article! Immunotherapy is definitely the way to go but finding a trial to suit me is nigh on impossible. I might think about contacting that London clinic. Seeing onc next week so will be pushing for some help with this.
Hope all lacies have a good weekend.

Good luck chewing I hope you can find something

sunny thank you! Those are gorgeous. Now I have a whole hat wishlist

1234 thank you :) my appointment was fine. I saw a new consultant ad they've now got two of them in the clinic to speed things up. He's very nice. Nothing new to report and he was happy to proceed with chemo despite my toe infection. However he forgot to prescribe one of my drugs so the chemo nurses spent the morning trying to contact him and various others to get someone to fix it. Eventually they had to give up and cancel my chemo as even if they'd got the prescription it would've been too late. I'm going to have it on Monday instead. I had a tiny cry as I was all psyched up for chemo, and had just had the very painful atropine injection they give before chemo! I wish they'd decided to cancel five minutes earlier though at least I've now learnt that some of the side effects I get on chemo day are actually from the atropine rather than the chemo

Flippy sorry it's all more complicated than you'd hoped. I hope they can work out a plan that won't affect your work or DS too much :) if you're only going to be having a few cycles then it may not be worth getting a port. It's more invasive than a PICC. I know they're a bit annoying for showering etc though.

Grismo thank you for the recommendation :) I wear a hat in bed too. It has lace on it. Very Victorian. But I find it so cold without it! How are you?

I'm trying to make the most of being chemo-free for my birthday. It's snowing a bit but not settling so I think we will venture out for lunch in a bit :)

Happy birthday Leslie Have fun buying hats

I hope you are having a lovely day Leslie

Happy (chemo free) birthday leslie and belated birthday wishes chewing- maybe a wish to find a trial
Glad the photo shoot went well argy
sunny great hat suggestions thanks, I have a small bamboo skull cap that goes under my wig which is lovely, but much prefer wearing hats!
balkan hang in there and banish those BRAC thoughts
flippy what a frustrating day, I have a PICC and it's been great, I can see a port has other benefits but I've heard not all the nurses are trained to use them, so can cause delays.

I have felt like crappy mum today because I promised to pick up DD and take her out for dinner. Instead
I am in hospital again
My injections haven't worked and I am severely neutrapenic again. I have 50/50 care with STBXH but its more like 20/80 at the moment and it's heartbreaking.
I've hardly been out since my chemo last week as I've been sleeping. I had hoped the injections would stop this. My mum always joked my immune system was crap.
Anyhow off to put some headphones on so I can attempt to sleep!
Love to all lacies

Ah, relieved to hear your appointment was ok Leslie. Happy birthday to you.

Desperately hoping you find a trial chewing. Sounds like you're well on the case but just in case - the cancer research UK has a search function.

We haven't heard from fluffy for a few days. Which is allowed of course but hope you are ok.

Once again wishing all the lacies and lurkers a comfortable and enjoyable weekend

Happy birthdy to our leslie. Hope you had a good one.
Chewing I truly hope that you get into a trial.
Halfbaked, please don't be so hard on yourself. You are only human and your DD will appreciate your struggles one day and lern from them. Hope you managed some sleep and that your immunity system kicks off well soon.
Waving to everybody else. Apologies for not mentioning each and every one of you but you are always in my thoughts.

Thank you for the birthday wishes :)

Halfbaked I'm sorry to hear you're back in hospital. I hope you feel better soon you're definitely not a crappy mum. Does it help to look at it as a sort of short term pain/long term gain type situation? Yes, your daughter might be missing out on a bit of time with you now, but the treatment is to give you a better chance of having lots and lots of time with her in the future :)

Yes some people have been a bit quiet recently. No pressure to post but I hope you're all getting on OK

Hello everyone, I'm still here, haven't been on my laptop for a while and can't post on the ipad as forgotten password and don't want to change it :)
I've had my first lot of cetuximab on Thursday and it really wiped me out this time, interesting about side effects from the atropine as I get really blurry vision on chemo days and now thinking it could be that.
I've been pretty lucky with hair loss so far, consultant said that I was doing really well for 4 cycles. I do have very thick hair and had the back cut much shorter, I know that it's definitely thinning on top but it's not too noticeable at the moment. The suburban turbans look good and were on my list of saved places to look when/if I do lose all my hair.

I have one more lot of chemo and cetuximab and then I have a CT scan booked for end of February to see what's been going on and if chemo is working. So everything crossed and touch wood etc etc.
Generally not suffering too much but the cumulative effects are certainly building up, I'm feeling much more tired and breathless. Feel like I need to do some gentle exercise but not really motivated or sure what to do.
Happy birthday and belated birthday to all you February birthdays, it's my Dad's birthday over half term so we're going out for lunch and I'm going to see some meerkats with dd :)
Hope everyone is ok and sending virtual positive vibes across the internet.

fluffy yes it can cause eye problems. There's a very comprehensive list of side effects here. Nasty stuff, though presumably less nasty than the irinotecan reaction!

I've got some comfy hats from Anna Bandana. I'd definitely recommend getting something to sleep in as I was absolutely freezing at night when I first went bald. I have the Anna Bandana lace ones. My hair clung on for about three months.

While I remember fluffy probably my least favourite cetuximab side effect has been my fingers cracking either side of my fingernails. I use hand cream constantly, which helps a bit. But as soon as I notice the start of a split, I have been using Germolene Liquid plaster. It's like clear nail varnish and you just paint it on any small cuts. It stings a bit to start with, but then it stops the cracks getting bigger or anything getting in them.

I have a scan end of February too so we can keep each other company while we wait for results :) good luck with yours. Is it your first scan since you started treatment?

Happy birthday to your dad and enjoy the meerkats

I have been using lotion on my hands and feet twice a day but thanks for the tip about germolene I shall be getting some.
Yes it is the first scan so everything crossed that things are actually working.
Looking forward to the meerkats tomorrow :)
Hope everyone else is having a good weekend.

Hello lacies, hope everyone is doing ok.

Good luck with finding something Chewing - I really hope there's something out there, and that your onc will help.

Hope you had a nice non-chemo birthday Leslie, and it's all a bit smoother tomorrow for your next treatment.

How are you doing half-baked? I know exactly how you feel about your DD, it's so hard. Good luck for your scan tomorrow Fluffy and hope the meerkats perform for you!

My plan is finally in place. Twelve weekly doses of paclitaxel along with herceptin for a year, followed with rads, hormone treatment and bisphosphonates. I got randomized to the PICC so no port, but as I'm having weekly treatment the hospital will look after it at my appointments so I don't need to go to the GP every week. I'm having more treatments than standard (that would have been 6 cycles over 18 weeks), but as you say Leslie, it's more invasive to have it fitted, and I'm ok with it. Still better than having to have an IV done for each one.

Now my lovelies, I'd be very grateful if anyone can give me a list of what to take with me for chemo days? I'm going to try the cold cap, so I'm assuming my over ear headphones won't work - would I be able to wear ear buds though? I'll also take warm clothes, hot drink, a few snacks, sweets, iPad/mags, lip balm and bottles of water. Any other suggestions?

Thanks Leslieand Royal I've done lots of face time and feeling better.

I'm still in hospital but looks likely I'll be discharged tomorrow as my neutrophil levels have been rising.
The nurse has just told me I'm having a blood transfusion tonight. I've not seen a Dr so need to find out why!?

Enjoy the meerkats fluffy I did some yoga with my DD, there are easy beginner videos on you tube, it was gentle and something we could do together.

fluffy fingers crossed you don't get it. It's like lots of papercuts. If it starts, avoid hot water as much as possible (no washing up!)

Flippy I haven't used a cold cap, so hopefully someone with experience will be along shortly. They need to be very tightly fitted so I think earbuds would probably be uncomfortable. It sounds like you've got most of the essentials. I take hand cream as my hands are always dry; crochet; puzzle book. I'm glad you've finally got a plan that you are happy ish with, but sorry that you didn't get chosen for a port! I hope the PICC works well for you. It definitely beats the weekly game of find the vein. Good luck tomorrow

Halfbaked fingers crossed for an escape tomorrow. Are you anaemic? That would be my guess. I had one a couple of weeks ago and I have had much more energy since :)

I have a sore throat. Argh. I'm dosing up on all sorts and hoping it clears up by tomorrow morning...

Evening all.
Flippy glad your plan is in place - hope all goes well. I had no PICC or port offered for my chemo . You seem to have everything covered, I just took a book and a bottle of water and maybe some chocolate .
Leslie hope you're not coming down with something and feel better soon.
fluffy fingers crossed that the chemo works well for you.
I am seeing onc tomorrow and have a list of queries to go through.Not least will be checking the chemo dosage. What I was initially supposed to be having was switched to a different method and timescale but I can't see that what I'm having is anywhere near the recommended dose for my type of cancer. I am having no side effects either which I know is a good thing but makes me wonder if it's actually doing anything. I've gone through the paperwork I was given but the page detailing the chemo drug and dosage has not been completed . Hopefully I can get all my questions answered.

chewing I hope you get satisfactory answers. Maybe they are starting on a lower dose and building up. There's a lady here having first chemo at 50% dose. It's definitely reassuring to have some side effects!

I'm just having my ondansetron then it'll be chemo time. Thankfully my throat was better this morning and all my obs were fine.

I hope everyone is having a good morning so far.