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January chemo starters ?

MrsMG
Member

Re: January chemo starters ?

Just another quick mention about thermometers. Had to send hubby out to get an in ear one today as appartly I was on the verge of hyperthermia if we had gone with what our mouth thermometer had said,  the nurse was very understanding and did say it's a good idea to get an in ear one so off he trotted to boots and spent a lot of blooming money !!! Bah !! It is expensive isn't it ! 

MrsMG
Member

Re: January chemo starters ?

Hi, have been completely whacked out last  few days but starting to feel a bit more with it today , slept every such a lot over the last few days , today went out in sandy (wig) and kept fiddling with it, have a feeling hats may b more of my thing , hope all of you are also ok? 

Karebear
Member

Re: January chemo starters ?

It's £15 a jar
Hopefully it will help with my white cells and give them a much need boast as mine are low and i get round 2 of chemo on Tuesday
Karebear
Member

Re: January chemo starters ?

I bought this one today it was recommend
MARKS & SPENCER OWN LABEL

Marks & Spencer, £14.75 (340g)

WHAT THE TEST FOUND: M&S has come up trumps. A score of 347.9mg/kg of MGO was the highest in our investigation.

Leptosperin levels were the second highest, at 446mg/kg, showing it had been gathered by bees feasting exclusively on manuka nectar.

WOULD IT QUALIFY FOR A UMF KITEMARK? Yes.
Jamesy46
Member

Re: January chemo starters ?

No I go on Monday to see oncologist so should know then , scared stiff tbh
Karen x
Dealdoh
Member

Re: January chemo starters ?

Ahh I have bought a cheap one also.  Perhaps I should try it out to see if it works.  Have you got a start date for your chemo yet James’s?

Jamesy46
Member

Re: January chemo starters ?

Yes it drapes a wet flannel on it lol , I bought a cheapy one but every time I took it was different so looked on forums and they recommended the ear one x hopefully won’t need it much !!
Dealdoh
Member

Re: January chemo starters ?

Good grief that is a lot of money for a thermometer.  I hope it bathes your forehead if you have a temperature!

Jamesy46
Member

Re: January chemo starters ?

I think , not sure that it’s frozen pineapple chunks so that it defrosts in mouth to help with mouth ulcers etc . Not altogether sure I’ve got that right xx
Bought my thermometer yesterday 36 quid ! It’s not cheap is it this BC lark !
Dealdoh
Member

Re: January chemo starters ?

Just starting to get a few things together for the start of the chemo.  Thank you for the tip about Manuka honey, that will go on the list.  I have heard that pineapple is good to eat during chemo.  Does anyone know if that can be tinned (in juice) or is it better fresh.

KirstyH
Member

Re: January chemo starters ?

Oh and teaspoon morning and evening x
KirstyH
Member

Re: January chemo starters ?

It's to help keep the immune system up as the chemo knocks your neutrophils, the tyoe of white blood cell that helps figgt infection. The manuka honey apparently helps keep the bloods higher. The stronger the manuka quality the better, I have went for 20+ fromThe Real honey company, but cheaper buying on amazon etc. A lot of ladies have said the m&s stuff is also great x
RosieH
Member

Re: January chemo starters ?

Hi ladies 

Whats the story with tha Manuka honey? What does it help with? Is there a best brand and how should I take it?

Thanks x

rabbit28
Member

Re: January chemo starters ?

Wow Kirsty, thats amazing well done you, oncologist told me exercise really helps with the side effects so I'm hoping to carry on if my chemo ever gets going!!

RosieH
Member

Re: January chemo starters ?

Hi ladies

i got the excercise sheet so I’ve started today. I’m trying to balance rest and activity, I think because of what I do I have a mortal fear of incapacity. Reading all these stories has really made me reconsider the cold cap and if I’m braver than I think and up for the shave!! 

All you ladies are awesome...so resilient it blows my mind. Who’d have thought a forum could give so much strength. 

I got my CT results yesterday and there is a shadow on my liver! They think it’s a benign thing called a hemaginoma but will discuss if they want to investigate it any further at the MDT meeting. I briefly felt the bottom drop out my world but then thought well the rest of the CT was clear and these growths are common between 30 and 50 year old woman and they can be fed by eastrogen which has definitely not be my friend it seems. So just trying to stay positive till I see the onco on Wednesday!!!

This bloody disease...xx

KirstyH
Member

Re: January chemo starters ?

I've been ating manuka honey every day since started as well, which was a tip from the forums. When I shaved my head (well hubby did it lol) I went for a number 4 on the clippers, so like a really short pixie hair cut, so when it was felling out was just wee short bits, as I was also told going right to the skin with a number 1 may irritate the scalp. The folicles really hurt for a few days after cycle 2 treatment, when they are dying off x

Jamesy46
Member

Re: January chemo starters ?

Thankyou annakarena I’m picking up such a lot of tips on here , I’ve already started on the Manuka honey as I have a bit of a cold so thought every little helps , when you say buzz do you mean like a grade one , off but not all off so really really short , I’ve had my brows microbladed so hopefully I will have some definition left. The strength I am gathering from these forums is immense xxxx
AnnaKarenina
Member

Re: January chemo starters ?

Hello everyone, I am from the November starters thread and on cycle 4 now of a planned 8 cycle accelerated EC-T treatment schedule. I wanted to wish you all the very best and share my experience too in the hope it may be helpful for some of you.

 

I should start by saying I am a complete wuss and worrier too, so the apprehension some of you are feeling is familiar and, I think, probably normal too. I felt so much better once treatment had started. I hope it will be the same for you. I was dreading it and had visions of being completely incapacitated, but like KirstyH, I have managed. I exercise most days, even though I am far from an athlete and sometimes it is tougher than others, but then that was true before chemo! I work through the cycle too for the most part, although I know I am incredibly lucky to have a job that allows me to work at home when I need to do so. 

 

I had a portacath fitted after discovering that my veins are a bit rubbish, although it has yet to be used. I am not great with needles either, but I have managed for the most part to survive cannulation and the assorted needle contact until this point. I always tell whichever poor person has to come at me with a needle that I am anxious and have been met with nothing but kindness and understanding. Don't be afraid to share your fears, whatever they may be. It is okay not to be okay. 

 

In terms of side effects, some cycles have been tougher than others, but I have learned two things along the way. The first is that everyone is so different and there is always someone who can help (on here and in the clinical team) with whatever happens. I had trouble with nausea early on and a combination of top tips from wise women here and some tweaking of medication by the oncologists made all the difference. It recurred on my third cycle, so when I go back next week before cycle 4, I will be sure to mention it. Don't be alone with anything. The second is that these threads are wonderful. I can't tell you how much the community of people going through this pesky process and walking alongside me has helped - I've laughed, nodded in recognition, got great advice and felt such warmth every time I log on. I can see the sense of camaraderie is already building here - enjoy it and draw strength from it.

 

Finally, the all important hair question! I didn't cold cap (I am a wuss remember) and my hair was cut short after cycle 1. By cycle 2, it was pretty much gone, so I went for the buzz (not shaved as my hairdresser said it would be kinder on the scalp). She said it would all vanish soon. It never did! I have a covering of velvet hair that seems to be growing not disappearing. I have a wig (Petunia the Pretend Hair) and some great hats. It was immensely and unexpectedly emotional when it went, but I did adapt quickly and now I barely notice when I look in the mirror. So far, eyelashes and eyebrows are hanging on, but when I move to Paclitaxel, that may change apparently. I am about to do a Look Good, Feel Better course in a few weeks, so I hope they will teach me how to hide the 'no brows-no lashes' look if need be. 

 

If you have any questions, do ask but in the meantime, I wish you all the very best for the coming weeks. You can do this, I promise. xx

KirstyH
Member

Re: January chemo starters ?

Glad to have given you some hope Rosie 🙂 I loved hearing good things before I started chemo as well. Did a 6 mile run last night with my running buddies and felt great!
I havent had any surgery at all yet though, only my diagnosis biopsy then an extra biopsy for a reserach study which both left me quite badly bruised and sore so ill need to prepare for the rest and recovery and the exercises they give when I get to that part of the journey after chemo is finished. We will all get there step by step xx
Shocked
Member

Re: January chemo starters ?

The arm exercises do get easier quickly - like you Jamesy I was exactly the same thinking thats so easy then the first shot after surgery at them is an Ouch moment.

 

Rosie I'm OK thanks - just very taken aback by the change of plan but hey it could be a good thing 🙂 Hope you hea; quickly after the snb. 

Jamesy46
Member

Re: January chemo starters ?

Rosie did they give you an exercise sheet , when I had my snb I looked at the sheet and laughed thinking easy peasy , then OUCH when I did them the first time !! Couple of days though felt loads better , my scar is just under arm bra height so kept rubbing once dressing was off , I kept a dry pad there for a while after till jf fully healed just to stop the rubbing x
RosieH
Member

Re: January chemo starters ?

Kirsty I absolutely love you...I’m sitting here and bit sore and pitiful after my sentinal node biopsy this afternoon and not really loving the patient feeling but as soon as I read your post I was so uplifted. I too love my exercise and being able to has really helped me deal with all this craziness lately, to hear someone say they’ve kept it up is music too my ears...thank you for that little ray of hope.

Shocked I do hope you’re ok, a change in plan woul throw me right out too.

ive got anathestic brain did you start chemo this week Mrs MG? How are you doing? Xx

Dealdoh
Member

Re: January chemo starters ?

Thank you so much to mrsMG and to KirstyH for the advice and lovely positive posts.  The nurse at my pre chemo assessment was very reassuring also and said while it might be a rocky road, they would be there to support us every step of the way.  She also said it was a very lively and friendly unit with lots of interaction between the patients as well as the staff.  

 

The pink wee sounds interesting and what with my hubby’s super orange wee (also due to medication) our loo is going to look like a tequila 🌅 

KirstyH
Member

Re: January chemo starters ?

Yeah the not knowing is the worst! Once you actually get going with it and find out how you are feeling it is so much better than the waiting and wondering. I am also a postive person so finding it helps to get thru by trying to remain positive and focused, although its hard all the time and allow myself the wee upset then try to get back on track. Take care and good luck xx
Jamesy46
Member

Re: January chemo starters ?

That is such a positive note Kirsty H , I’m a very positive thinking person so hoping I can come through this virtually unscathed , I think it’s the not knowing that’s the scary part xxx thank you
Shocked
Member

Re: January chemo starters ?

Well the tumor was stil HER2 negative so off to Calafornia it goes for the Oncotype DX- just had a call from the hospital and I've got to go back in tomorrow - something to do with clinical trials. I now have an appointment on the 17th which is when they expect the results to be back for the test. So it looks like it'll be a few weeks now before they decide if chemo will be effective now - wish I'd known this before Christmas when I was told that I definitely needed chemo but I know they are doing there absolute best to provide the correct treatment. 

 

 

 

 

KirstyH
Member

Re: January chemo starters ?

Hi ladies, I am from the December thread, so thought id pop in to say hello, as it helped us december starters when others from earlier threads dropped in! I have had 2 cycles of FEC so far and 3rd next Thursday, then onto Tax with herceptin & Perjeta for the next 3 as I am her2+ as well. I am 34 and this has all been such a massive shock, I was terrified of becoming so ill on chemo and scared I wouldnt be able to work or exercise as I do loads of training/running, so this was a big worry for me. But to give you some positives, I have not really had any side effects from FEC so far, and have managed to be at work full time, only missing treatment day each time so far, I have also been out running quite a lot, just taking my time. I know every one is very different in how they respond, so I know I have been very lucky, but it just shows it is not always as bad as expected! I expected the worst and therefore was pleasantly surprised when I felt fine. Just listen to your bodies and you will know when you need to rest or if you are ok to do things. I also shaved my head on day 18 of round 1 and it felt much better getting rid of it myself, before it started massively falling out. 

I still have a long way to go, with surgey next then rads, then hormone tablets but the time has passed surprisingly fast as well. Good luck to you all on starting, stay strong xx

Jamesy46
Member

Re: January chemo starters ?

Had my bone scan today ready for hormone therapy , so that’s another thing out of the way , I was told I need a heart scan too Kirsty so I’m guessing that will be next week after Monday’s meeting , well done on first round mrsmg think of it as one down 5 to go , hope side effects aren’t too bad , I will be putting mine on here and checking everybody elses to see if I’m. Normal !! Xx
MrsMG
Member

Re: January chemo starters ?

Let us know how it goes shocked. Am in Wiltshire and they have been brilliant apart from the wrong lump being sent off to be tested hence I’ve had to wait for quite a while. Never mind. The man next to me had a canular fitted and it looked quite a faf and I hate them with a passion so was happy to have the picc line fitted.
Kirstyp86
Member

Re: January chemo starters ?

Jamesy46 yes it is they said they’re done seperate the first times to make sure I don’t react ,
Jay68 that’s good to know thanks for that il make sure I’m prepared for a long old day and take stuff to read etc
.... and that amazing news to hear I’m so pleased for u!!

I feel exhausted already so dreading Monday , I was called in last minute yesterday for a heart scan (apparently one of the drugs can affect ur heart so bad to just make sure mine was all ok) today I have a meeting at 1.30 with the chemo team and other people starting chemo will also be there and we’l be shown round etc .

It’s mad how fast ur hair loss can be isn’t it , I have a wig ready for if I want to wear one (I’m 31 and my children are all very young too young to understand so don’t want to shock them more than anything ) but I’m going to look about getting scarves too , just so much to take in cxx
Shocked
Member

Re: January chemo starters ?

Hi Mrs MG - your first session out of the way (you are well and truly on the road to beating this now)

 

I am still a bit taken aback by the complete turnarond in yesterdays unexpected meeting with the surgeon - have been overanalysing everything as usual. I'm 43 so was told the same as you last time I saw her in that they like to throw everything at making sure they have got rid at our age especially with one of the lymph nodes being affected. I guess I should be very graeful that the team are making sure the treatment is right for me it did fell a bit like a backwards step but thats not necessarily a bad thing if they get the treatment right. 

 

So this morning I shall wait by the phone for results to see what the next step is - guess I'm posting in the wrong place now as well.

MrsMG
Member

Re: January chemo starters ?

Hi shocked , my boob went off for the Oncotype test just before Christmas, the oncologist said that as the test had not come back yet and due to my age (47) she thought I should go ahead and start. So I have. As far as I am aware the results are still not back yet but I am seeing her on the 22nd jan so maybe we will discuss it then. Bit late now as I’ve started it.
Dealdoh , I started Fect yesterday and before I started I went to see my GP and asked for bits and bobs. I got gaviscon , a limbo for my arm when showering to protect my picc line. Some movicol and a mouthwash ( cant remember what it’s called but will check in a bit)
I also took with me yesterday my iPad and headphones and some boiled sweets. It wasn’t as bad a I thought it was going to be. It was nice and calm in there and everyone was friendly .
I got given a bag of goodies ( my meds to take home ) and I’ve been drinking plenty of water. If you are on fect like me your wee wee may be pink afterwards. That was a source of amusement to me yesterday afternoon !
Good luck
Dealdoh
Member

Re: January chemo starters ?

Hi Ladies

 

Attended pre-chemo assessment today and due to have portacath inserted next Monday and then first chemo the following Friday.  Having six cycles of fecT together with Zometa (bone strengthening stuff),  I’m not really quite sure how to start to prepare for this.  

Shocked
Member

Re: January chemo starters ?

I am now completely confused as instead of meeting with oncology today as expected my surgeon saw me again - it seems things have changed since I saw the surgeon before Christmas when i was told I would be having Chemo as 1 lymph node was positive - now following a meeting with oncology they want to check everything again and for some reason my Her2 result hasn't come back following my surgery - wasn't even aware it could be different from the biopsy results which were Her2 negative.

 

So now I have to wait for a phone call to let me know my Her2 result tomorrow then if its negative they want to consider Oncotype DX which will take 3 weeks then they will decide whether chemo is right or not for me 

 

I'm not quite sure what to think at the moment it was a completely different meeting to what I was expecting

Blue2
Member

Re: January chemo starters ?

RosieH, just to say, I had neoadjuvant chemo starting 9th January 2017, so almost one year ago, and i too had my T before my EC! It doesn't seem to be the usual way but it does happen!
WhyteFawn
Member

Re: January chemo starters ?

Hi ladies. My hair started to fall out just before 2nd FEC cycle. Almost completely went in the space of about 3 days. I'm on 3xFEC and 3xT and I am 1 week after 2nd T. My hair has started to grow back my head feels like velvet with all the little short hairs. So your hair can definately grow back whilst on T if that's your course.
Best wishes x
Cs66
Member

Re: January chemo starters ?

Hi January 2018 chemo starters. I just wanted to wish you all well as you start this part of your bc treatment. Two years ago I joined the jan 2016 chemo starters thread after having two mx and lymph node cleArance. The support I got from the other ladies on the thread going through it was invaluable and we all supported each other through the ups and downs.
It was not easy but we all got there and came out the other side. Some of us cold capped (I did and I kept a reasonable amount of hair) others braved the shave and were bald and proud. Some of us went down the wig route. We shared our fears and were able to say and share things we might have kept hidden from our families.
Two years later it seems like a disrant bad dream. I’m fit and well. I’ve had a double Diep reconstruction and I feel good! I just wanted to say you will get there.
Lots of love to all of you
Claire xxxxx
Sue C
Community Champion

Re: January chemo starters ?

Hi Ladies

Hair starts to fall out near the end of the first cycle and beginning of second. It can shed pretty quickly, so be prepared as it can make quite a mess. It is upsetting when it happens, there is no getting round that, but you sort of get used to it.

Sue xx

Jamesy46
Member

Re: January chemo starters ?

That is quick ! So it comes out on first cycle ? Does it carry on coming out with T or does it start to grow back ? , I watched a YouTube video yesterday about how to put a scarf on and I did it ! I surprised myself , I’m. Not sure if I’m going to go down the wig route yet , first appt on Monday so will see xx I had my eyebrows microbladed so I should at least have a bit of definition on face xxx
Karebear
Member

Re: January chemo starters ?

I got my 1st chemo in December
So my hair started falling out big time this weekend so I braved the shave when getting wig fitted I took my friend with me we laughed and cried but overall wasn't to bad then went and had a nice lunch.
Chemo no2 next Tuesday 😢 but it shouldonly take 30mins at most with the picc line line
Karebear
Member

Re: January chemo starters ?

I got my 1st chemo in December
So my hair started falling out big time this weekend so I braved the shave when getting wig fitted I took my friend with me we laughed and cried but overall wasn't to bad then went and had a nice lunch.
Chemo no2 next Tuesday 😢 but it shouldonly take 30mins at most with the picc line line
Shocked
Member

Re: January chemo starters ?

Thanks Mrs MG I have my oncology meeting tomorrow evening so will know more about whats coming. Was thinking of getting something totally outrageous wig wise - well its something I hope will be once in a lifetime!!

 

The catheters all scare the life out of me II'm such a wimp) so well done you today.

Jay68
Community Champion

Re: January chemo starters ?

Hi Kirstyp86 - I'm from May 2017 group but I see you're having the same chemo and targetted therapy as I had and I just wanted to reassure you that the first time you have them they are administered really slowly and the nurses keep a very careful watch over you. They also keep you for 3/4 hours for observation after the infusions so be prepared for a long day!

Subsequent infusions are done together and they administer a little quicker and they don't keep you for observation.

The best ever news I received following surgery (mx and total node clearance) - was when I I was told the chemo and targeted therapy had been 100% successful - there was no cancer remaining! - Good luck x
RosieH
Member

Re: January chemo starters ?

Here here Jamsey...will be waiting for your update and fingers crossed for us all x

Jamesy46
Member

Re: January chemo starters ?

Is that one day chemo , one day herceptin Kirsty ? I actually can’t wait till next Monday now to get on with it x absolutely scared stiff but wanting to kick it’s butt x
Starfire9
Member

Re: January chemo starters ?

Hello everyone.

 

I'm starting chemo on the 10th January and my chemo discussion is on Friday. I'm having T and Carboplatin as I have Muscular Dystrophy and I hope to meet others on the same or similar combination.

 

I was diagnosed 8 September and have had 2 WLE, one infection and SND. I have been offered chemo, (1.5% benefit) then full clearance (which I don't think I will have at this point) RADS and Tamoxifen for 10 years. 

 

In preparation I am having my long dreadlocks cut off on Saturday and collect a short wig the day before. I'm telling everyone I've just had my hair cut off as I'm keeping things low key and private.

It will be interesting to see how I get on.... I had terrible morning sickness and usually have side effects from all medicines.

 

Good Luck to all and I'm hoping I can pair up with someone to compare side effects on a daily basis X

 

 

Kirstyp86
Member

Re: January chemo starters ?

Hi ladies xxxx

So had my first oncology appointment today , I start my chemo Monday and Tuesday (8th& 9th) I found out I also tested positive for HER2 so that’s wny they’re separating it over the 2 days to do chemo one day then the meds for the HER2 the next , from then on will be once every 3 weeks .
Such scarey stuff to finally have a date but I’m glad at the same time, how is everyone else getting on cxx
Sue C
Community Champion

Re: January chemo starters ?

Jamesy that cruise is definitely something to look forward to and aim towards xx

MrsMG
Member

Re: January chemo starters ?

Hi shocked , they let me know who did it in the area and I popped along to see her , she was lovely and very helpful. I also have bought on completely different than my usual hair .
I went to the hospital this afternoon and they fitted the picc line , the man who did. It was very jolly and he reassured both me and my husband am now back home and hubby is cooking me dinner. Yum !
cmccorry21
Member

Re: January chemo starters ?

Crazytimes2017 , I'm from the December thread. I have had a hick man put in as they couldn't insert a pic. The hickman sounds and looks a lot worse than it actually is. I asked for a sedative for the procedure. It did help as is a fairly intense feeling. I hour this helps you. Anything else I can help you with. Just ask. I'm here!