May 2017 chemo starters

[Mai7]

The bleep is Shiitake. I forgot to censor it. You have to mistype it with ii to get through censor checkers!

[Mai7]

The mushrooms recommended in the book for being the most magical are Oyster, **bleep**ake and Portobello but pretty much any mushroom is good. There were a couple if shrooms listed which you don't see in the supermarket. The bigger supermarkets have a regular supply.

[treehouse]

I agree with Katie. Please make the call wolfee. Best be safe. X x sending hugs

[MJK]

They are trialing bringing the mammogram forward to 47. No, it would still have missed me... Any mushrooms are good but the maittake and shiitake are the best for beta glucans. Make the call about the temperature. X

[katie11]

Rosie65 - sure you will be fine. What cocktail you having tomorrow? I tried the cold cap when I went for a look around and only had it on a few minutes and couldn't stand it. I move to weekly doses after 3 EC so there wasnt much point for me as you can't use it on the weekly.

Mai7 think I'm just on countdown! I was reminded of you before a mini drove past me with the first part of the registration being MAI7. Your right about how many of us there are. Especially as how many you see when you go for your sessions. Feel lucky we have each other it's good to compare notes x

[katie11]

WolfEE ring that helpline! I was told anything above 37.5! Better to be safe x

[Rosie65]

Ok I'm seriously considering not cold capping. Just the thought of it at the moment is making me feel sick!!

treehouse - that's great news. Such a relief for you

Katie - glad it all went well for you, gives me hope for tomorrow

Mai - was just thinking the same thing about how many of us there are and so young

For all those with tnbc, my sister had it when she was 29 (they didn't call it that then, just knew it wasn't hormone receptive) and is now 50 and fit and well. It was all distant memory for her until I was diagnosed lol

[WolfEE]

Mine is 37.6 at the moment!! What mushrooms are you all eating? Certain type or all mushrooms. I love mushrooms and speaking of them I have a craving so may send my sister shopping later. I really fancy a mushroom how do you Cook them 🍄 🍄

[MJK]

Hmm, I was told 37.5c and over to seek help but also that if I felt shivery and weak to call. There's something in mushrooms called beta glucans that stimulate the immune system so a little bit magic 😎

[Raitchr]

Re temperature, I do mine 3 times a day. If I get a headache, from hay fever at mo, I will also check temp before taking paracetamol. My chemo ward said to ring if 38 or above or if have severe side effect or just not feeling right. Mine hasn't been higher than 37.5

Day 16 hair started dropping out yesterday and a bit today, haven't shaved it yet, had a busy day. May leave it until weekend, friends at school today said it looks ok and no bald patches, just thinner at temples, but is ok.

[Mai7]

MJK, glad it went well for you. Lol Dulux paint colour! I've read the anti-cancer book - I really liked that book, hence the obsession with mushrooms! Are they magic? 🙂  I'm currently reading Radical Remission, which I can also recommend.

[Mai7]

Katie, glad it went well today. You seem ecstatic and relieved! Both times, the post-treatment euphoria reminds me of when I had all of my wisdom teeth removed by local anaesthetic! 😜

Everyone, I just had a count up of how many of us have joined May 2017 starters and there are 18 of us (excluding visitors not having treatment).  What I find disturbing is that we are only a percentage of May starters in the UK and even more disturbing is how many of us are under the age of 50 and therefore under the age of the NHS screening programme?

[MJK]

First chemo done, a bit fuzzy headed (no cold cap) and pee that is epirubin pink (sounds like a Dulux paint colour - can't see it catching on though). Hope today went well for you Katie. Great to hear there's no distant disease treehouse. Latest read Anti Cancer by Dr David Servan Schreiber. Very interesting read.

[katie11]

2 down woo hoo! Today went well and been sent home with my bag of drugs! Lol

Great news treehouse! So pleased for you.

Hope everyone else doing chemo today has got through it ok. No doubt we ll be up all night.

I usually take my temperature in the morning too and then as and way I feel I need to x

Has anyone else heard of the oxygen chambers? There was a lady doing chemo with me today who said she has looked into it. It's supposed to repair the damaged cells from chemo.

[Mai7]

Treehouse, no wonder you've been filled with paranoia - the waiting must have been quite an anxious time for you. X

[treehouse]

Hi wolfee. I take my temperature when I wake up. And again if I remember or if I'm feeling paranoid. Always check before taking any paracetamol.

[treehouse]

Hi Mai. A week after diagnosis I found another lump. In the dent by my collar bone. Bcn was great and got me an appointment the next day. Scan shows slightly enlarged lymph node but due to position cant biopsy as near major blood vessels. They extended CT to include my neck. They are just monitoring it .

[busybeeS]

Hi Rosie65, welcome to the group. My hair started coming out noticeably on day 17-18. End of day 21 - thinning everywhere and some bald patches, so once it starts it's probably going to be all gone in a week. I didn't cold cap though.
Tree house - glad you've had some good news. Waiting to hear anything is always an anxious time.

[WolfEE]

Good luck MKJ and Katie today I'll be thinking of you.
Who else is today I'm loosing track?
I'm on day 3 after first FEC and still feeling lucky no sickness or anything to dreadful but have a very dull head and feeling a bit confused but so far it's fairing better than I'd expected. My tempreture is staying fairly high at the point that I'm supposed 2 call the number can't even think what that is right now but Monday during my treatment is was very close they said I may naturally run at a higher temp? How often do you all take temperature ??

[Mai7]

Treehouse, that must be a huge relief for you. Sending you a virtual hug. Do you have to have neck lymphs removed? Do they always look at neck lymphs? They didn't show any interest in looking at mine. X

[Mai7]

Hi Rosie, I cold capped for my first session and started shedding on day 18 or 19 to the extent that it made me decide not to cold cap for the second treatment. I decided I just wanted to get that chemo into every cell in my body and worry about the hair later. I must admit, the cold cap did make me feel a bit sicky just before treatment = not good!

[treehouse]

High Rosie I didn't cold cap and only just noticing shedding these past couple of days. Day 17 today.

[treehouse]

Just got a letter from my surgeon. My CT scan shows no distant disease related to my bc. Just lymph nodes in my neck that we already knew about. So relieved 😁. Your mind starts going crazy thinking every bump and ache is sinister. 😊 I appreciate any good news at this point.

[Rosie65]

Thanks for all the welcome messages. When did you all start losing your hair noticeably? I haven't lost much yet but only day 13 after one treatment, with my next session tomorrow. I cold capped last time but wondered if that's why I was sick as had a blinding headache afterwards. Undecided whether to cold cap again tomorrow.

[busybeeS]

Tree house & Katie 11 - I've had long hair for years, not really changed it too much, ranged from Bob style to long. It's been liberating getting rid of it! Just think, no more styling or brushing for a while.
Good luck for today Katie 11 and MJK and anyone else going in for treatment this week - it's hard to keep track of where we all at..

[treehouse]

Thanks Katie. Good luck today. I just need a defining moment to push me to do it. A patch would probably do it.

[katie11]

Good luck today ladies. I'm round 2 this afternoon! Treehouse know exactly how you feel I thought the same. I've got thick hair so it would have been shedding for ages . It did go dull and horrible and then matted so it had to go x

[treehouse]

Well done busybee. I hope today goes well. Not ready to shave yet. I suppose there is a small part of me hoping it wont all go. I know that sounds daft. Onc said it Will.

[busybeeS]

Hi. I shaved mine to grade 3 before chemo then grade 1 when it started falling out. Got a few bald patches now and very thin all over. Hospital today for my 2nd treatment, just waiting to be called in. No hat or wig - guessed I'm in a place where they're used to seeing people without hair, so just going for it.

[treehouse]

Hope all goes well MJK

[Mai7]

Hope all goes well for you MJK. X

[MJK]

Hi everyone. I hope today goes well Katie. Session 1 for me in an hour, thanks for the water tip. I had my hair cut short before starting but suspectthe clippers will be out once I start shedding. X

[treehouse]

Hi Raitchr. I am the same hair dry and dull. It is shedding but not noticeable yet. There were rather a lot of curly little friends in the bath last night tho!!!

[misyangel]

Thanks Mai7, my appoinment is before my bloods. Ha Ha I like that going to door with towel on head I worry about the postman coming but that is good way round it.

Anniej how awful for you with your hair in the plug hole, that was why I took mine off before hand as I think it would have really upset me to see that happening.  What a fantastic husband you have giving you a nice distraction. 

Raithchr good luck taking your hair off, i had a wig but when I put it on my sister and husband said they prefer me with no hair and I have to say I even do myself.  I am wearing mostly scarves as not brave enough to go out the house with no hair lol. 

[Raitchr]

Morning all. Hair is hanging on. Think it will get chopped today sometime as husband away to morrow so can't do it myself. Washed it gently this morning, looking a bit dull and fragile. The boys want a lock of hair to keep until mine grows back.Slept in a chemo hat last night so I didn't wake up with it all over the place.

I am not having a wig, its just too hot and I usually have my cut in a short bob for summer as I hate being so hot.

My Oncologist appmt is before my blood test so he don't know my bloods but suppose it will go ahead depending on bloods next Tues.

[Mai7]

Ratchr, if you want my opinion, I'd say give it a grade 2 all over. It seems bold but like others have said, it means you are taking back control. Also, the shedding is less visual, less painful, less uneven and it becomes easier to go for the wig.  I was wandering around the house this morning without the wig and said to my partner "if the postman comes to the door, I'll just wrap a towel around my head as people get freaked out by inconsistency"! My partner took a couple of artistic black n white photos of me for the record. I look like I'm off to Tibet to join a pilgrimage! 

Well done Katie for going for it, I'm sure it was the best decision. I bet you're relieved!

Welcome Rosie to our lovely group. Glad you plucked up the courage to join us, it really helps to share what you are going through at times with people who are in the same position.

[Mai7]

MisyAngel, when you have the blood test your results will go straight to Oncologist who will discuss blood levels in your appointment the day before treatment and give the go ahead to come back the next day (assuming your Oncolony and treatment appointments are on two different days, like mine).  I get my bloods done at the local GP surgery in the morning and they get picked up in the community pick up in the afternoon to be delivered to the hospital for processing. It just means I only have to go to hospital two days instead of three days! 

Wow, grade zero - I didn't want to risk getting my head cut even though partner regularly uses a beard trimmer lol!

[treehouse]

Oh Annie big hug. Did you cold cap? Are you ready to shave? I have started shedding today. Hubby asked when I thought I might want to shave. I said when he started finding it in his dinner. Glad you enjoyed yoga. I miss it. Almost went back today but don't think my shoulders are up to it yet. Really helps to calm and relax.

[Rosie65]

Thanks treehouse. Hopefully that's the one I'll get. On the plus side he did say that the lump had shrunk a bit after the first dose so I felt that being sick was a small price to pay if it's going to work.

Thanks Katie - hope all goes well tomorrow

[Anniej]

Hi all, after saying I wasn't bothered re hair loss apparently I am! 😢 Yup, wept this morning when I washed my hair and it came out in handfuls, literally! Thought we were going to have to get dynorod for the plug hole clearance. Big bald patch at front!!! Wonderful hubby whipped me off for a walk along the river, plus coffee, then dropped me off at Maggies for the afternoon. I was able to join a yoga class which restored my equilibrium. Big thank you there. Also met people a LOT worse off than me. After all, I've only had ductal carcinoma. Yay me! X

[treehouse]

Best of luck Katie. Will be thinking of you tomorrow. Another step closer.

[katie11]

Thanks ladies, your right misyangel. It gives you back some control over it falling out. It got to the point where I was getting scared to wash or brush it cos I didn't want to see it coming out.

Treehouse - my boys were fine. Youngest didn't even notice. Older one just said why's your hair like that . Mum's at school just said ooh didn't recognise you with your hair down ( I always wear it up)

Welcome Rosie65 so glad you have joined us ( not glad your on here obviously )we can all help each other . There are a couple of us on here that are also tnbc.

Finished drinking my 2 litres ready for tomorrow and off for early night. X

[treehouse]

Hi Rosie welcome aboard. I was the same watching the posts until I had a tough day and jumped in. There are plenty of anti sickness meds, I am sure they will find something that works for you. Don't suffer in silence. I took Emend aprepitant for 3 days. Worked a treat. Good luck.

[Rosie65]

I've been reading all your posts but having only just plucked up the courage to join in! It's been really helpful to read all your experiences with chemo. I was diagnosed with triple neg bc in April. Had first EC 11 May and as its accelerated EC the next dose is on Thurs. Was unfortunately sick last time so feeling a bit apprehensive although the oncologist has upped the anti sickness, so fingers crossed

[misyangel]

I had zero all over lol

[misyangel]

Same for me raitchr my mum has had to book time off work and she doesn't have any more holidays if it gets cancelled as they are all booked with my treatment  

[Raitchr]

I am day 15 first FECT, head has felt like it has sunburn for 2 days now its falling out in 2 or 3 strands at a time. How short did you cut yours? Wondering if I should have buzz cut say 2 or 3 grade all over??? Any suggestions...

[Raitchr]

I am seeing Oncologist this Fri and blood test next Tues for 2nd Fec on Thurs 1June. I will ask the question about getting blood results back. I need to know as its half term hols and need Mum to take me to chemo and husband have the boys so need to know if there is a chance of it being delayed as Mum doesn't live locally to me..

[treehouse]

Well done Katie. What did the kids think of the wig? I go for bloods Friday morning and onc Friday pm. They seemed to think they would have results ready. I am due round 2 on Tues. ( should have been bank holiday Mon)

[misyangel]

Thanks kate11 and well done on the hair I felt so much better once mine was gone, I felt like it is constantly there and you are waiting for something to happen wth it.

good luck with your second one tomorrow, they certainly are coming round quick xx