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Anyone starting Chemo in December 2018?

Member

Re: Anyone starting Chemo in December 2018?

Hi Jayne how did you get on today seeing the nurse? Hope you got all your questions answered

I like the way you had a mohekan for the day it did make me smile picturing it in my head i wish I was that brave 😁

Feeling more positive today after my good cry sometimes you just have to let it all out sending love and positive vibes to everyone x

Member

Re: Anyone starting Chemo in December 2018?

Pleased to hear you're not suffering ill effects of 2nd FEC. Good luck with the head shave. I've still got a bit of stubble hanging on at the back but pretty much bald sides and top x

Member

Re: Anyone starting Chemo in December 2018?

Marykamille what Web site did you use for the head accessories?
Member

Re: Anyone starting Chemo in December 2018?

Fed up of shedding hair, so off to get it shaved tomorrow. Day 5 of FEC2, no brain but apart from that minimal side effects. Just bored!

Member

Re: Anyone starting Chemo in December 2018?

Hi Catlady
Like you I am reading posts and trying to keep up. Hope you have a better day today.
My hair is just a few wisps now and it's so hard to look in the mirror! I keep my head covered at all times. My wig is good and does not irritate but I save that for when I am outdoors.
Yesterday I ordered a few hair accessories - scarves etc on a good, quick website. These things can give us a lift. Anyway, my husband hates the headscarf I wear mostly and says I look like a fortune-teller!
We had a good laugh over that.
You can't carry on as normal - let yourself cry and rage and whatever it takes. What we're going through ISN'T normal - so be kinder to yourself. XX
Member

Re: Anyone starting Chemo in December 2018?

DiKat, moving on to THP after 3rd FEC. With you all the way x
Member

Re: Anyone starting Chemo in December 2018?

Oh no Fluffysunsinepants. This is all certainly a test. Pleased to hear your clear and hope you feel less drained in the next day or two. Take care x

Member

Re: Anyone starting Chemo in December 2018?

Hi all,

DiKat sorry to hear your having such a dreadful time with the chemo, be gentle with yourself.

I have had a nightmare since Thursday when my oncologist thought i had a blood clot, so ordered an ECG, blood tests, chest xray and CT scan, also two days of clexane as a precaution. Thankfully all is clear but i resemble a pin cushion & feel drained.

Onwards and upwards x

Member

Re: Anyone starting Chemo in December 2018?

Thanks Jayne1966. It does feel good to share with others who understand.  So are you moving onto THP after 2 Fec? Good luck for your appointment tomorrow and let us know how you get on. Hugs to you too xxx

Member

Re: Anyone starting Chemo in December 2018?

Callaly, it didn't really sink in worth me either until my hair fell out. I tried to have fun with it by getting a mohekan for a day... at 52! But still I have the cancer look now and is very upsetting. Like your and DiKat I am also chemo first having just had second FEC. We are all scared as heck so just need one of us to be strong each day for those wonderful words of encouragement. We have this ladies... tomorrow is another day xxx
Member

Re: Anyone starting Chemo in December 2018?

DiKat I really feel for you. Sounds like a rough couple of days. I'm having exactly the same as you only 4 THP which I'm terrified of. Seeing my cancer nurse keyworker tomorrow and I have lots of questions. Really hope you stay to feel better soon. The waiting for the feeling crap and side effects to tail off is bloody awful. Big hugs xxx
Shi Community Champion
Community Champion

Re: Anyone starting Chemo in December 2018?

Ladies, cry, scream, shout, pull a moon out of your bedroom window, do what ever you need to do for you. It’s hard to put yourself first as we are all naturally by nature caring for others before ourselves but you have to focus on you right now and just blame it all on the steroids/chemo 😁👍don’t forget your look good feel better sessions with Macmillan, you’ll be shown techniques on how to apply makeup specially, silly as it sounds when you get a bit of face on it does take off the washed out paller you can end up with on chemo. Loosing hair is a massive hurdle to overcome on the journey and a day at a time is all you can do, but it’s a day closer to finishing chemo 👍 and hair starting to come back, once all treatments done the lush red dot shampoo bar called new and a bit of Jamaican black castor oil rubbed on heads gets hair back nice and quick and thick. Tried and tested tip from mishy18 from july17 thread, we used it and so have others from other threads 😘😘 big ❤️❤️❤️👭👭👭👭💕💕💕✨✨✨Shi xx
Member

Re: Anyone starting Chemo in December 2018?

Thankyou Dikat yes I've been trying to carry on as normal and trying too look positive to family but in reality I'm scared and it's so hard because as much as they try and understand no one really knows unless you're going through it or been through it.
I'm sure your not having a negative effect on family they will understand and I'm sure they want to help as much as they can when you're not feeling well due to chemo
And yes I really hope tomorrow is a better day for us we have to take each day at time xx
Member

Re: Anyone starting Chemo in December 2018?

Thank you drummers widow that's made me cry just reading your reply, it helps to know I'm not alone so thank you xxx
Member

Re: Anyone starting Chemo in December 2018?

Sorry you're feeling like this catlady, I'm the same having chemo before surgery so guess still getting our head round it. Have a good cry and let it out. I'm feeling angry today as feel like I'm having such a negative effect on my family with my difficulties with chemo. It's good we have this place to vent. Sending virtual hugs, and hopefully tomorrow will be a better day for both of us xx

Member

Re: Anyone starting Chemo in December 2018?

Hi Catlady.

 

You have a good old cry! It’s an up and down rollercoaster. It’s perfectly normal for you to feel like this. This whole cancer thing is horrible and you are going to have days like this. Wish I could give you a big hug xxxx

Member

Re: Anyone starting Chemo in December 2018?

Hi everyone

I haven't posted lately but have been reading other people's posts. 

I'm having a really down day today where I can't seem to stop crying, and feel this is the only place where people will understand how I'm feeling right now.

I have my second chemo tomorrow and even though I knew my hair would start to fall out, yesterday and today I've had a whole lap full of hair and I'm surprised I still have any left. (my hair was very thick)

I'm having chemo first before surgery so I have been trying to carry on as normal as can be but I think losing my hair has finally hit home that I have cancer and this journey is very real! 😭😢

 

Member

Re: Anyone starting Chemo in December 2018?

Yes, remember your previous post about burning sensation. So good to get advice from others who have been through this. Just not worth taking any chances with anything. Thank you xxx

Shi Community Champion
Community Champion

Re: Anyone starting Chemo in December 2018?

Ladies please always get burning pee checked with units even if no raised temperature. Fec did that to me and it was infection that if I’d not got to unit and on drip could have been serious. Unfortunately just during chemo you have to be super careful to the point you think I’m turning into a hypochondriac but you are not, this is chemo and getting through safe is all that matters no matter how much you think oh i’ll Just wait until tomorrow you are always better to make a quick call and ensure everything is ok. ❤️❤️💕💕💕✨✨✨Shi xx
Member

Re: Anyone starting Chemo in December 2018?

Hi Kitkat18

I had been drinking loads of water, started day prior to chemo and ever since, around 2 to 3 litres a day so feel I am hydrating well. I can tell that one of the drugs irritates my bladder though as feel almost urine incontinent for first 2 to 3 days. Think I just have to roll with these se's and carry on being vigilant with temp etc. Just talk about knock you when feeling down! Fingers crossed for you with T. Will look forward to hearing how you get on x

Member

Re: Anyone starting Chemo in December 2018?

Hi Dikat, sorry you are having such a rough time. I also have had cystitis symptoms 3 times, had it checked with no sign of infection. Now I know to down a couple of pints when it starts and it quickly resolves. So for me I think it is dehydration, which can also give me headaches. One of the fec is also known to cause bladder irritation so I also have a glass of cranberry juice in the first few days after chemo. Also had to be treated for thrush downstairs - the SEs seem never ending don’t they?! However just had final fec so onto the dreaded t x

Member

Re: Anyone starting Chemo in December 2018?

Hi DiKat. Sorry you are feeling so unwell. It must be really miserable for you. Lack of sleep makes it worse. I hope that you feel better soon. Xxxxx
Member

Re: Anyone starting Chemo in December 2018?

So, yesterday was day 4 after second fec (reduced dose this time) spent most of evening in gp unit! Started feeling a burning sensation down below but tested urine and no obvs sign of infection. Couple of hours later, started with intense burning in my chest again and didn't have much of a voice. This was how I started when I ended up neutropenic prev month so as you can imagine, a little anxious, even though it was pretty early in cycle. I've taken much better care of my mouth this time and although no visible thrush/sores in throat thought I better ring helpline to nip it in the bud if possible. Was advised to go to gp unit to see if they would prescribe fluconazole in case thrush was in gullet. Gp initially a little reluctant at first because partly they don't seem to understand effects of chemo drugs and secondly don't like to prescribe without justification if they can't see anything visible. Agreed to give me a weeks course after further discussion and that it was based on advice from ward and my prev experience. Decided to do bloods which again due to lack of experience with chemo drugs through up some results that made him want to check with the on call registrar. As the GP unit is located at the hospital where the oncology department is, I asked if I could talk through the results with the nurses on the ward whilst he was waiting for the registrar. He agreed to this. My white cell count and neutrophils were in the 30s way above normal. The nurses said this could be as a result of steroids and filgrastim which can cause increase and wouldn't have started declining yet as only day 4. They did say my infection markers needed checking though to be on the safe side. This was done and they came back in the normal range so, so far so good. They've asked me to call tomorrow and may do repeat bloods. Went back to see GP and he was happy with feedback and had also spoken to registrar. I know it's not possible that GPs fully understand all this so do feel grateful that the out of hours go unit is located at the hospital. I did feel as though I had to try and help put the pieces together to gain the reassurance I needed. Lucky my hubby takes it all in .

I'm not feeling any better or worse at the moment but have only just taken second fluconazole. I know I've got to stay strong and keep positive but am beginning to struggle. Doesn't help with lack of sleep, feeling dizzy and having migraine type symptoms. Only one more fec to go but then 3 THP so I'm dreading what that will bring.

Sorry for the downer but needed a rant. Hope everyone else is doing ok xx

Member

Re: Anyone starting Chemo in December 2018?

You're right about calories, DiKat. They have to be the priority. I heard a report just out that 'dieters' (not us - our weight loss isn't deliberate!) must not cut out carbs as they supply so much vital fibre. What they recommended at meals is exactly what I usually eat anyway. Just not able to eat so much of anything really. After the mastectomy my posture has really changed, too. Not a good look!
Member

Re: Anyone starting Chemo in December 2018?

Normally you take steroids as early as possible in the day, I am on 4mg dex at breakfast and 4mg at lunch for 3 days. Making me so hungry, I put on 4lb in the 3 weeks since I started chemo. Gutting as I spent most of last year on a serious diet and lost 4 stone! Hair now shedding, so am feeling happier that chemo is working! (was starting to worry as very few side effects except tiredness).

Member

Re: Anyone starting Chemo in December 2018?

Hi Angelblue
Just thought I would say hi and hope this cycle is being kind to you x
Member

Re: Anyone starting Chemo in December 2018?

It’s awful. I’m trying to keep it in check but it’s creeping on😟😟

Member

Re: Anyone starting Chemo in December 2018?

Drumnerswidow I am putting weight on too. It's gutting!
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Member

Re: Anyone starting Chemo in December 2018?

Just looked at the predict site and it says not suitable for people having chemotherapy before breast surgery so that's probably why it's not been mentioned. I will get more information from oncologist and breast cancer surgeon, just need to deal with this awful chemo and side effects first. Thanks for your help xx

Member

Re: Anyone starting Chemo in December 2018?

It’s all very frightening isn’t it. I have a grade 2 invasive micropapillary ca ER+8/8 & PR +7/8 with high grade DCIS. I would speak with the Oncologist again to discuss further xxx
Member

Re: Anyone starting Chemo in December 2018?

Yes I do. Still have some trouble sleeping.
Member

Re: Anyone starting Chemo in December 2018?

No predict wasn't mentioned. Its grade 3 IDC, Er0, Pr0, HER2+ multiple lymph node involvement in axilla. This is from the letter I received from Oncology consultant. Scares me to death reading that stuff but know I need to face up to it. 

Member

Re: Anyone starting Chemo in December 2018?

Hi DiKat. I’m having a Taxol on its own. I had mastectomy and lymph node clearance. 26 nodes taken, 17 of those affected. Did they go through the Predict site with you. It gives percentages. Also what about phoning the nurses here. Don’t mean to pry but what grade cancer have you? Sometimes that affects your treatment options. Xxx
Member

Re: Anyone starting Chemo in December 2018?

Do you take all 3 in the morning Drummerswidow. Think I would end up looking like a lobster. I will ask if I can do something different next cycle. Thank you x

Member

Re: Anyone starting Chemo in December 2018?

Hi All. I seem to be the only who has put weight on! Also I take my dexamethasone in the morning not at intervals during the day. 

Member

Re: Anyone starting Chemo in December 2018?

Hi maryKamille

Glad you have the tooth issue sorted and hope you get your next chemo as rescheduled. It's a pain when you lose weight when you don't need to. I hate looking scrawny! I did manage to put another couple of pound back on in my delayed week last time but would like another half stone back on. I managed to eat well yesterday but feeling a bit more nauseous today so that doesn't help. I get weighed each time I go for blood and see consultant but think that's mainly cos I lost so much for me. I am monitoring myself too so not dwelling on the healthy eating so much whilst having chemo, need the calories so will tackle that later.

 

Member

Re: Anyone starting Chemo in December 2018?

Hi there,

 

Thanks for telling me about the Manuka. I might get some - tried it out a couple of years ago (because apparently it's also good if, like me, you have a nervous stomach soon. For the time being, I just grab the honey we have at home and ad it to my morning cereal or take a teaspoon on its own. It's soothing to the mouth/throat and probably the soul, too.

 

xxx

Rapunzel

Member

Re: Anyone starting Chemo in December 2018?

DiKat, I am on the same steiroids too 3times a day. When I cocked up the times one day I only took 2 so I could sleep as was not feeling sick and that is what they are for. I seem to wake for a wee early am so try to take my first one then. Done now for this second cycle. Worst side effect at the moment apart from tiredness is the awful taste in my mouth. Actually done some paperwork today and booked a massage for next week!
Member

Re: Anyone starting Chemo in December 2018?

Hi everyone

Steroids seem to be the topic of the moment. I was told that steroids are in the chemo mix/drip so you get them straightaway each time. I also had doses of Dexamethasone (2mg) to take 3 times daily for 3 days but told to finish them by 4pm or 'teatime' as I would never sleep at night! Had other anti-nausea pills to take as well. 4 days of various doses.

Had my tooth extracted on Wednesday - for those who have been following that saga of mine. OK so far. See Oncologist on 16th of this month and expect to have my (postponed) next chemo on following Monday. What with dental problems, lack of appetite, not eating much and the long gap, I am wary of what will happen next time. Best not to dwell on it.

I have lost about 3 kg in a month. But it seems steady now. I wasn't overweight to begin with, so hope to maintain that level. Are others monitoring weight loss?

Member

Re: Anyone starting Chemo in December 2018?

Thank you Dikat, I'm ok, but still lack stamina sometimes. I've been on a course this morning, so worn out my little brain cells!

Hope the injections help with the neutropenia, 10 seems an awful lot x

Member

Re: Anyone starting Chemo in December 2018?

Your message made me laugh! I was definitely like that last  year and not much better now! I'm sending you a pm

Member

Re: Anyone starting Chemo in December 2018?

I wonder if you could have two at breakfast and one at lunch. They also give me the glow and hot flushes😕
Member

Re: Anyone starting Chemo in December 2018?

Hi Kitkat

Yes same steroid and strength but 3 doses so hard to get them in early. At least it's only 3 days and with me being such a lightweight on meds feel like I need to take them after food. I get a lovely facial flush from them. Thanks for the info re antihistamine, will look into that x

Member

Re: Anyone starting Chemo in December 2018?

Hi Dikat, which steroid are you on - I take dexamethasone 2mg 2 twice a day - but was told firmly to take first dose at 8am and the second before 2pm (even though instructions say space evenly through the day) or I wouldn’t sleep at night. Perhaps ask your helpline whether you can change timings. 

i am fortunate that I don’t get the bone pain with filgrastim although they do make me feel very jittery and everything seems to fizz but a lot of people take the antihistamine loratadine which seems to help. X

 

 

 

 

 

 

 

Member

Re: Anyone starting Chemo in December 2018?

DiKat. Hope you feel better today. Sounds as if you are going through it with your chemo.
Member

Re: Anyone starting Chemo in December 2018?

Drummerswidow

Yes I agree with Jencat, feel like a lie down after a shopping centre at the best of times so you did well. Are you having Taxol on it's own or with anything else. My next stage will be surgery. I've kind of been burying my head about which way to go. Breast consultant initially said lumpectomy and I also have multiple lymph nodes affected. She says she's happy to do mastectomy if that's what I want but there's no guarantees it won't come back elsewhere in my body. I know it's a decision only I can make but do you or anyone know of a good reputable site where I can get info to make a well informed decision on the best possible odds. Thank you xx

Member

Re: Anyone starting Chemo in December 2018?

Hi Jenkat. I only went to 3 shops and stopped for a coffee lol 

Member

Re: Anyone starting Chemo in December 2018?

Jencat hope you're coping and feeling ok.

So day 3 after 2nd fec today. Managed to get out of bed about 6pm yesterday as dizziness had started to subside. Ate pretty well throughout the day too. Hardly slept a wink last night, steroids I guess. Does everyone else have 3 a day for 3 days after chemo day. Mine say take after meals and don't have tea til 6ish so last one ends up being quite late. Had banging head at half 3 this morning so had to take some paracetamol. Not keen on doing this due to bashing liver gets from chemo. My throat doesn't feel as harsh today. The biotene toothpaste and mouthwash seemed to help although I did freak a bit when I saw that the mouthwash contains 2 types of parabens, cant win! I also took my first teaspoon of life mel honey last night and swished it round in my mouth. It felt like that provided some relief in my throat and gullet too. So the first of 10 filgrastim injections today, not keen on the pelvis, top of leg pain and headaches the 5 from cycle 1 provided me with last time but here's hoping they keep the dreaded neutropenia at bay this time 🤞

Wishing everyone a good day xx

Member

Re: Anyone starting Chemo in December 2018?

Drummerswidow, I think you must live in my area as you went to Bluewater-it's my nearest shopping centre. I'm worn out going there without having chemo as well! x

Member

Re: Anyone starting Chemo in December 2018?

Hi DiKat. I’m okay thanks. Managed to get to Bluewater shopping Centre early today but had to have a lie down this afternoon to get over it! 

Bloods and PICC dressing change tomorrow in readiness for chemo on Monday if all okay. I have one more EC after that then 4 cycles of Taxol. Got 4 weeks Radiotherapy after that. It seems relentless. Never mind it’ll fly by!