May 2017 chemo starters

[Anniej]

Argy Margy, yes, me! Had first one today and knocked me for six. Stomach all bloated and achy. Went back to bed and felt much better. Decided to walk at nearby NT property and it was really hard work. Have you read the SE on the sheet? Fatigue is right in there!!!😢 Need some tips on this one! X

[katie11]

Anyone else feel rubbish after daily injections? Can't work out if it's them or just chemo in general. Seem to feel like have stomach / back cramps like period pain just after them. Feel like I'm doing OK other than sleeping , which hopefully will wear off now sickness tablets have all gone x

[Argymargy]

Hi All,

Just butting in to say that I'm a March FEC-T starter and have had 3 FECs now.  I've had one virus (chesty cough) kindly donated by my son but nobody was worried as my temperature remained fine.  It's just not very nice to be poorly when you're going through chemo!  I'm signed off sick but have been keeping in touch, doing emails and bits & bobs and have been to the office once.  I would say that if I needed to I could work reasonably well during the second half of the cycle but I think I would get pretty tired.  That may be because I'm in my 50s... 

Best of luck to you all. xxx

[Anniej]

Hi Williams, I've seen the last of my grandchildren for four months on recommendation from Onco. Apparently no one with a cough or snotty sniffle should be near me.  Also said not to wrap myself up in cotton wool! Then at pre chemo assessment the nurse went over a list of things including hand gel and anti bacterial wipes, but on one of the other threads a member reckoned the gel dries your hands dreadfully. What a lot of different advice we're getting!🤔

[Anniej]

Hi Katie, yes, I've got my injections in the fridge ready for the district nurse tomorrow. I think there's only 3 days supply at this point, but I think it increases as I progress. Presumably the white blood cells need boosting more as the chemo builds up. Feeling surprisingly well, so far. I was told to expect a bit of a crash days 3-6. That's when most of my essential pills end. Still have a pack of stand by anti sick tabs. It's the crashing headaches I'm having that's worse. Anyone else got them? X

[Raitchr]

Hi my work have left it up to me, I have said that I don't intend to work through chemo to avoid germs, we hot desk in large offices, you never know  who you will sit by. This is standard protocol, I work local government and I am paid 6 months full pay 6 months half pay then phased return to work when I go back. I am very lucky they have this policy. Also they appreciate my 8 years of service with no sick days. They prefer continued service so take a temp on to cover sickness for a set period rather than wonder each day if I will be in and what work I can do. I have regular meetings with supervisor to update them on appointments either in office or via email. My GP renews my sickness / fit note every 4 weeks and is in touch with Oncologist. I appreciate that I am lucky and makes going through this easier for me.

Heather

[Mai7]

Hi Katie, I've just completed 5 days of injections (no one tells you about this!). Glad that's over now - it's tough at first but you get used to it.  I'm still waking up every morning at 3am, like my bodyclock has been altered, then I go to the loo and switch on the lights so I can check the colour of my urine (disturbing) to make sure I'm not ill and then try and get back to sleep!

[misyangel]

I am in a office with 2 other people so not a big office the odd visitor pops in. My nurse said I should be ok as long as I am by a window. My work colleagues are being great and know the risks of infection etc just feel like work is really helping me at the minute plus the financial side as well. I am due to have 8 lots of chemo and just hoping to be able to work through the first four if I am able to 

[katie11]

I was planning to work but my oncologist didn't want me to be in a close working office environment so he signed me off. Feel quite relived really. Hows everyone doing today. I'm feeling more tired today (day 2) or don't know if that the steroids / sickness tablets that keep waking me at 2am every morning since. Is everyone having/ had the 7 day injections? Xx

[Williams500]

Hi misyangel, I start on Wednesday and am planning to work during my treatment. Was hoping to have Wed to Sunday off and then work from home the next week and maybe office on the third week. My onolcoigst told me that colds/coughs weren't such a factor, it was all about bacterial infections so didn't think office work would be bad. What have people reccomendations been about being around people? x

[busybeeS]

Hi. I had 1st chemo on Wed. Off work yesterday and today but if I stay feeling as well as I do I plan to work from Mon onwards, but I can work from home, so I don't have to run the risk of being exposed to coughs and colds. Stop taking anti sickness drugs tmrw, so fingers crossed everything should still be ok. Stay positive everyone - it helps to keep us sane!

[Mai7]

Hi MisyAngel, I'm continuing to work but just from home.  I would say, day 2-4 is the biggest challenge in tiredness/brain fog and bladder tenderness and after that I've felt fine. Does your work environment expose you to a lot of people? If so, your main risk is germs. If you need financial help then go on the McMillan website. They can help you if your situation becomes difficult. 

[Mai7]

Glad to hear everyone is doing well. I hope Hannah is ok - if you are reading this Hannah, let us know how you are.

My anti sickness combo is: Metoclopramide Hydrochloride and Dexamethasone. Anniej - my steroids kicked in on day 2 but I only took anti sickness pills and steroids from day 1-3.  That's all the steroids I was given but still have more anti sickness pills if I need them. I took half dose of anti sickness on day 4 just to test the effect then stopped after that worked ok.

[misyangel]

Hi All,

I am due to start my first chemo on the 12th May and I am hoping to go back in to work on the Monday after as I only started a new temporary job for 3 months last week so hoping I can get through the 3 months. Reading all the different comments on this forum is amazing and a real life saver.

Anybody else trying to work through their treatment?

[Raitchr]

Feeling less anxious today about starting chemo. Enjoyed 2 hrs in the garden in the sun this afternoon, we had to move the bench out of the breeze but it is glorious. Hoping I will be able to make the most of the good weather over the next few months. Maybe even get back to work with a tan!!

[Anniej]

Well ladies, so far it's been an exciting day. The hospital couldn't get through to the GP yesterday as it was an automated system and they were run ragged on the chemo ward, so I left without that being arranged, with a promise that it would be. Hmmmmm. I was told to book in with reception for weekly flushes of my line,  but reception was closed for the day. Hmmmmmm Spent the morning phoning around to make sure everything was in place, which it was. Then I crawled back into bed and napped feeling quite exhausted. I did get 6 hours sleep last night, and thought that was excellent.☺️ So far the ant-nausea tablets are holding, and the car sick feeling has abated.  I'm on EMEND and ONDANSETRON if anyone is interested for future reference. If these don't hold I've also been given a packet of Metoclopramide. im sticking with huge amounts of water and just soups and smoothies. To be honest I don't feel hungry. Anyone know if and when the steroids kick in? 

Thinking of all you lovelies getting ready to rock and roll 🍀 Stay strong. X

[katie11]

Glad to hear it went well Anniej xx

[Anniej]

Thanks, Mai. You seem to be doing well. I remembered the ginger advice and did a big bake on Monday - ginger biscuits and ginger Oaty bites. Worked well tonight when the car sicky feeling escalated. So thanks for that. X

[Anniej]

Bless you, Heather, I think you're right. The minds is playing games with the body, and the body is reporting in sick so you don't go for chemotherapy!  X I didn't get any sleep last night worrying, and, know what, just headache and car sicky - so far. My Onco requested the Hickman line at the first meeting when I told him I had problems and showed him my arms. I have had to wait for a slot in theatre, but it was such a relief today to flip the line out and just be plugged in!😍 The surgeon thought I was well suited as it lasts six months, unlike a PICC line, and does save the veins which get thin with chemotherapy. My treatment is five months. Downside(s).... I can't get it wet ( so have taken out shares in cling film to wrap it up to shower) and it has to be flushed weekly. This will be done at the hospital which is a short bus ride away....if I'm feeling ok, otherwise it's car and coffee. I'm getting really good at coffee shopping!  Another downside , it was the toughest thing I've ever gone through. Would do it again, in a heartbeat. Thinking of you. X

[Mai7]

Glad to hear today went well Anniej, look after yourself. Xx

[Raitchr]

Hi Anniej good to hear it was ok today. I was wondering about getting a picc line as that seems much easier for chemo and bloods. Also I think it stops damage to veins. The chemo nurse didnt really push for anything, at meeting kept saying cannula so assume that's how they like it. They are a nurse led ward, no doctors there. 

I don't start until Tues but today have felt really rough, tired and achy joints., spent the afternoon resting in bed. A friend said it must be my body and mind play tricks like Braxton Hicks in pregnancy!

Take care

Heather

[Anniej]

Hi Busybees, thanks for asking. Yesterday was a real toughy as I had a Hickman line put in and I was left feeling very shaky, battered and bruised. Didn't really feel up to today's ordeal but it has been so much better, I can't believe it! 😄. The line saved half an hour of time, and the nurses loved it. The EC is really thick so was put in in a syringe, so is quick any way. Have been shopping , had some home made soup and whole meal bread. Just finished a couple of kiwi fruit which apparently helps sleep,according to an article in the Times.  Took all my pills, and the district nurse is coming Saturday to give me my injections. Was given loads of anti sickness pills and it was really impressed on me I must take them, plus additional in case the others didn't work. Wow, sickness must be a big issue. Keeping up the huge water intake and the mostly liquid diet. Fingers crossed . Best wishes to all following on. X

[busybeeS]

Hi Anniej, how did it go today?
Katie, in reply to your hair loss question, I had quite long hair, but I only ever used to wash it, towel dry it and comb it, so I don't think losing my hair will be a big deal. I got my partner to clip it (9mm I think) - he did this at the weekend before chemo. It'll give me a few weeks to get used to it before it falls out, then I'll just go with scarves and hats. I actually quite like it being short. So you never know, might be the push we need to go for a new style.

[Raitchr]

Hi I had right side mastectomy and SNB, no reconstruction,  on 17 March, chemo starts next Tues. Oncologist said I don't need radiotherapy so active treatment should be done by end of Aug.

Heather

[katie11]

Ha, that's my thinking to, new lifted reduced boobs hopefully some weight loss, healthy diet and exercise. A kick up the behind I needed really even if it is a bit extreme. Have you got a date to start yet? Have you already had surgery?

[Raitchr]

Katie re hair. I haven't started chemo yet. I was growing my hair before being diagnosed with bc, was in a long shoulderlong bob. Had it cut 7 weeks ago before surgery, into a shorter bob. Had planned to go shorter this week but felt reluctant to splash out 30 pounds on a cut if it is going to fall out in next 3 weeks. I am planning on going to first chemo with hair how it is and then when it starts to fall out just get my husband to use clippers to get rid of length. I have brought a few chemo hats like beenies and a few scarves.

My take on chemo is a total body reset, new hair style after and new healthy diet!

[Mai7]

Hi Katie, glad you're doing well, yes the chemo brain! That lasted around 4 days for me, as did the tender bladder so it's probably the high level of circulating chemicals. I even had to get my partner to calculate what time to take anti sickness pills as that was too difficult. It will pass and then your brain will feel normal again, just keep up the healthy eating, little and often and drink plenty of water to keep flushing it through. ...And of course, allow yourself to rest.

[katie11]

Should say 2 am chemo brain is starting already! X

[katie11]

Morning all, not feeling too bad the morning after just a bit blah and was wide awake from 2pm! !!! Was just thinking about hair, have you all thought how to deal with the loss? Let it just come out or just go for it and get rid in one go?? How's ur hair coping Hannah?

Good luck for those starting today xx

[Raitchr]

Good luck Anniej for tomorrow, taking ages to get to my 1st one next Tuesday. Just want to get started now, don't like waiting!

Heather

[Mai7]

Well done BusyBeeS and look after yourself.

I did an energetic one mile walk this evening, in fact, my partner struggled to keep up with me.  Must be the super healthy diet!

[busybeeS]

Hi everyone, thanks for the well wishes. 1st one out the way. It was all ok today, had pre-assess and treatment and was done within 2 1/2 hrs. Came home with a few drugs. Had lunch when I got home and a snooze on the sofa. Just got back from a walk. Apart from feeling a bit 'out of it' and having a rumbling tummy I feel fine at the mo. So hopefully they have got the anti sickness drugs spot on. Long may it continue! I didn't cold cap and have decided against getting a wig. Good luck Annie for tmrw xx

[Mai7]

Anniej, Wishing the best of luck for tomorrow. Try not to worry so much. You'll be in very safe hands. X

[Mai7]

Well done katie11 and take good care of yourself.

[Williams500]

Glad to hear yours went ok Katie11, hope busybees went well and good luck for tomorrow Anniej x

[katie11]

One down , 11 to go!!! Wasn't to bad really only took 30 mins to go in. Just home and resting up . How did you get on busybees? Good luck for 2morrow Anniej xx

[Anniej]

Hi everyone, home from hospital having a Hickman line in. Has taken the smile from my face. Still, I am trying to be positive in that I won't have to suffer any more poking about with needles. Don't exactly feel ready steady for chemo tomorrow, more like lay down and whinge! 🤕 Good luck to you two starting today . X

[Mai7]

Raitchr, I came across it purely by accident, because I was already taking it for allergies and wanted to check whether it was safe to take during chemo, then low and behold I found lots of positive research on the drug use for chemo and mets! Let me tell you, I have googled nearly every food I eat with the word "chemo" and "breast cancer"!

[Raitchr]

Mai7, I take Loratadine for hay fever and general allergies through out the year. Will take a look at internet about metastasis.

H

[Raitchr]

Hi Hannah

Welcome to our little group! 

Heather

[Mai7]

Hi HannahS and welcome to the club with criteria no one really wants to meet! You should definitely get your anti-sickness drugs reviewed, don't suffer in silence. Did you call the helpline about your sickness? My nurse said "if you don't ring, we can't help you" so you must ring. When I was in on 27th for chemo a woman was there for her last of 8 rounds and she had an intravenous anti sickness before chemo due to past bad experience of sickness. Are you still nauseous or sick? The main concern is dehydration, bladder/kidney infection and lack of nutrients which you really need right now.

The cold cap is definitely the worst bit of the treatment, I agree!  I'm not bothered now if I still lose my hair but I think initially, cancer, chemo AND hairloss were all too much to take in at once! 

[HannahS]

Hi,

I started chemo on 24 April, but all the April starters seemed to start much earlier so I thought i'd join this thread if that's ok.

I was more scared of the cold cap than the chemo itself but in the end it was completely fine. I'm not going to stress about losing my hair. if the cold cap works then great, if it doesn't then I'll shave my hair off at some point!

The actual chemo injection was totally fine and afterwards I had wondered what I got myself so worried about!

Having read most of these threads it looks as if I might be a bit unusual in how sick and unwell I've been feeling since having chemo. Although i'm on AC and most others seem to be on FEC. I'm definitely going to ask for better anti-sickness drugs before my next session as I was feeling so unwell that I didn't leave the house from Wed to Monday.

[Mai7]

Katie and BusyBeeS - I'll be thinking of you today, you'll be fine and have all the knowledge you need and support from your lovely ladies here when you need it.

Heather - keep leaving those brochures in strategic places, open on a beautiful picture!

Im feeling better today, thanks, I think the ibuprofen and antihistamine did the trick.

Ive read a number of research posts indicating that there is significant research interest on the off-the-shelf antihistamine "Loratadine" for preventing post-operation metastases.  It's a harmless drug, unlike aspirin which is also being researched for the same reasons. I've also read that Loratadine may help with bone-pain side-effects from chemo. 

[katie11]

So today's the day!!!! Start the countdown, good luck busybees too . Keep pestering about the holiday Heather. We are booking a half term holiday too , something to focus on. Hope your feeling better today Mai7 xxx

[Anniej]

Busy bees, thinking if you tomorrow. Good luck.🍀 

[busybeeS]

Thank you Mai7. In a way I'm quite looking forward to the start tmrw. At least then I'll know how I'll react to it all instead of second guessing. Good luck everyone x

[Mai7]

I called the chemo helpline to check whether I ought to be more worried about my glands! (That's where the paranoia set it). They suggested that it isn't a normal side effect and to take ibuprofen and keep a watch on my temperature. I stopped taking antihistamine since chemo as I didn't want to increase the risk of nausea but I'm going to start taking them now I've got past the nausea period safetly! It's all trade-offs ladies, balancing one drug and side effect against another! 

...and, yes, hooray for germ-free avatar friends!

[Raitchr]

My hay fever is much worse this year and sounds just like what you are experiencing!

Good job we are virtual humans and you can't avoid us!

Hate wishing the summer away but this year I can't wait! Trying to tempt my husband into thinking about a week in the sun for Oct half term holiday,  will pester him every week that I am at home off work having chemo!!

Onwards and upwards ladies, we can handle this!!

Heather

[Mai7]

Hi Raitchr, I haven't had any metallic tastes or any other odd tastes in my mouth but food like granola tastes really, really bland so I'm favouring the spices. Fresh pineapple tastes like a dream!

i think I'm over the worst in terms of brain fog and tiredness but coming into immune system low period now. My oncologist suggested day 7-14 is the period to avoid contact with humans as much as possible. The only side effect I'm noticing now is that my glands in my neck are tender and I keep getting a neuralgia feeling in my jaw and a bit of a thumping head, though not a headache, but then I suffer with pollen allergies anyway. I've enjoyed working at home today; it gave me something else to think about!

In my last week before chemo we assembled large IKEA wardrobes! Enjoy your last week of getting jobs done and socialising freely.

Hey, I can't believe we're all wishing the summer away! 

[katie11]

Thanks Mai7. Just done last minute shopping list today and also been to see about a wig 2 day so feeling bit more prepared. Good luck everyone roll on end of August xx