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
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! 😭😢
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
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
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
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
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).
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
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.
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
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.
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.
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.
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?
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
Your message made me laugh! I was definitely like that last year and not much better now! I'm sending you a pm
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
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
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
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
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
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!
One more fec then move on to 3 cycles of Taxotere/Herceptin/Pertuzumab. I've been trying to avoid reading about these but keep stumbling on things that say they're worse. Yikes!
Cant believe I've already started with throat problems again this cycle and it's only day 2. My voice has nearly gone and I'm being really careful, cleaning teeth regularly with soft tooth brush, using mouthwash and drinking properly. I'm never sure if it's coming from my throat and or up through my gullet from my stomach. Have long standing bowel and digestive issues so this is a weak area for me. I already take esomeprazole 20mg twice daily and asked Oncologist on Monday if I could increase whilst on chemo and he said no as would cause issues with constipation!
How are you doing? Xx
Hi Pastamissus. I didn’t mean to imply that Manuka honey will help boost neutrophils as I know it doesn’t but it can help with some symptoms ie soothing sore throats.
Thanks for the info on hair loss, Drummerswidow. I have hopes that my few last bits will just take a dive with the next Chemo. At the moment it is good to have a few bits of fringe etc poking out of my headscarf. Today I tried out the stuff I bought to do my faintly-still-showing eyebrows. I'm not sure I have got it right - looks a bit menacing to me! But husband says it looks fine and maybe I had just got so used to not much definition being left that it strikes me more now I have tried to correct it than it would others.
Shi thanks for your info. Really valuable as always 😘
Rapunzel2018 like Drummerswidow says, the honey will be good for your throat if nothing else and Manuka is a really good one.
Jayne1966 I know what you mean about not realising there's so many types of BC. I feel we have to trust that the Breast Cons & Onc and rest of team have chosen the best treatment pathway that's specific to us.
Drummerswidow yes getting lots of comments about being positive and brave etc. I think people who haven't experienced this feel they need to boost us in this way and I've had some say if it was them they'd be in pieces. I do feel like this on some days but know I've got to hold it together and carry on.
Well had my 2nd Fec yesterday, yay 2 down. Had reduced dose so now at 80%. It really doesn't like me!!!! Felt the effects quicker this time. Totally spaced out, feel like I've been hit by a bus and mouth feels what I can only imagine what it would feel like to eat the bottom of a bird cage😂😂 have to see the funny side at times. Spent most of the night tossing and turning feeling cold to the touch but in a pool of sweat, sorry to sound gross. I'm just so tired, head is pounding but can't sleep. On a positive note feel less nauseous and managed a bowl of porridge for breakfast. I so don't want to lose any more weight, I'm 5ft 5, weighed 8st 11 beginning of Nov, 7st 12 now...might look good on a pert muscular young woman but not so good on a sagging and what feels like rapidly aging 49 year old 😂 Anyway got some biotene dry mouth toothpaste and mouthwash on it's way to me today so hope that helps a little with the dryness. Keep forgetting to ask for these things on prescription and really must start as not working throughout treatment and not entitled to any sick pay.
Sorry for the long post but trying to keep my mind off how rubbish I feel and gain such great support from these threads 😘
Don't let my experiences cause worry/anxiety to anyone else. I have always been a lightweight with medication and suffered side effects so to take such quantities now, it's hardly surprising!
Hope everyone has a good day, love & best wishes xxx
There's no proof that honey (of any type) helps the imune system. It does help wounds heal if spread on the wound though.
Re boosting neutrophils - the only thing that works is GCSF injections or reducing the dose of chemo.
I know how how you feel. Conversely I’m getting a bit fed up with people telling me how brave I am, how positive I am. I’m not inside and when I’m home alone I’m panicking about my finances as well as my health. I too look in the mirror, not too often, and I feel as if I have been mutilated. My scar is horrendous, I’m fat and I have no hair.
We we are all just getting on with it but it’s an uphill struggle most days. I’m finding people keep telling me how well I look! How am I supposed to look. I am making an effort and putting on makeup when I go out. Just want to scream sometimes xx
Thanks for telling me about the honey. Wonder whether Manuka would also do the job (it's easier to get hold of that). It's all rather expensive. I hope your appetite returns soon and that you'll be able to eat well and keep strong. My other half kept reminding me I had to eat on the days when I really didn't feel I could stomach much. Had to force myself sometimes but have managed to keep my weight stable this way.
All the best,
Yes, that's how I feel - not keen on the side effects but also don't really want therapy to be postponed (although to be perfectly honest I could do without any more therapies but who wouldn't want that). No, I haven't been given any G-CSF injections so far. Will ask my oncologist about them. I've read that neutropenia often is most severe in cycle 1, that gives me hope. Am a little worried at the moment but fingers crossed that I won't get an infection and that WBC will recover quickly. Ironically, the antibiotics I'm on at the moment can also cause neutropenia. Can't win, apparently. Another question to ask the oncology team.
All the best,