Feeling blue today. Think it is the build up to EC2 tomorrow and packing up to go home from holiday, which I always hate. Have had a wonderful week though the big C hasn't been far away, intruding into my thoughts and throwing up uncertainties about the future. Hubby and I have a long held plan to settle in the country once the smalls are independent and staying in this great cottage in a perfect location in God's own country has made us yearn all the more. A few months ago I could dive right into the dream but now I am so aware that I just don't know what the future holds. Sorry for sharing my blues but am guessing we all have dark moments. Will give myself a virtual slap and snap out of it and face the packing! And hoovering up all my sheddings!
Thank you so much for your comments - they really are appreciated, despite making me feel quite embarrassed. I am trying to help, as I am fortunate to have the mental strength to do so - as I think no one should ever have to go through this without a helping hand - even if it is only a virtual one.
Yes, lol - it is my 'duvet' week - and today, post chemo FEC number 4 - day 7, I am starting to feel normal again, which is a fabulous! I am fortunate with my side effects and seem to have the right meds. Fatigue, unfortunately cumulative - mucositis and now painful veins - is my extent of side effects.
And of course - HOT FLUSHES!
Yes Alex, they did not tell me either. Having 'listened' around - they seem to be made worse by chemo - and it would be natural to experience them now, as our estrogen production - is no longer....
So you may experience them more often and more intense. Unfortunately the 'sweaty' bit is likely on the way further through your chemo treatments. Once past chemo and recovering, they should start to become less frequent and intense - but cannot report on that yet - still got to get there, lol!
I am going to try sage tablets - to see whether they will reduce frequency and intensity - as that seems to be the only thing, apart from layered clothing, natural materials, etc., which we can take, especially if we are either ER+ or PR+. There are likely other challenges moving forwards, but they may be better discussed off forum, lol.
Nausea - discuss now - do not wait, if you can. As far as my understanding - and my own experience goes....
We get given steroids to help our body not to reject the chemo drugs - and we usually take them for a number of days, in conjunction with anti sickness drugs. Some of us take higher doses than others - depending on our individual circumstances.
We may feel nauseous for 2-3 days post chemo treatment day. If is is bad - the question may be, whether they can adjust steroids or give you stronger anti sickness drugs. If you are still struggling with nausea post day 4/5 your anti sickness drugs may need adjusting or you may need something, such as Lansoprazole or similar, additionally, to help your stomach. Lansoprazole is a proton-pump inhibitor which inhibits the stomach's production of gastric acids. Our mucus membrane, which includes mouth and stomach is likely to be comprmised by chemotherapy.
The sooner you can address your challenges, the better it may be for you. Should they refer you 'down the line' it should be ok - as every authority/unit has different ways of dealing with this.
You may also wish to contact your GP and practise. I did before I started chemo - the knowledge of the how/what/why is often sketchy on that level - after all they are general GPs not specialists and very, very busy. It was amusing 'educating' medical staff, lol. However, it gave me a network of support on a very local level - GP, practice nurses and districtas my chemo and treatment units are 30 miles away. Invaluable! I feel so safe and so cared for - despite being very rural and on my own.
Sleep and steroids - it can hit us all differently - some of us can sleep, and others not. It is very individual and may also depend on type of steroids and dose, as well as how long we take them.
Hot and cold - some of us develop hot flashes/flushes at this time - and especially if we have an enforced menopause we might have to learn to handle these. For some they may go away again, for others they will stay for quite a while, but may lose intensity post chemo. Clothing made of natural materials and layered will be a great help. The same goes for bedding, too. Natural materials will wick sweat away, dry easier and regulate our temperature better, too. Sage tea may be of help.
Feeling nauseous - should you still struggle 4-5 days post your treatment - it may be a good idea to talk to your BN nurse or treatment team to have your medication adjusted. The first 'chemo run' tends to be a good indication of what side effects we are likely to expect after folwing treatments. So getting your meds adjusted now - may be a really good idea.
Oral hygiene - absolutely vital - our mucus membranes are being compromised by chemo, which can lead to all sorts of unpleasant side effects in our mouths and gullets. Eating chunks of pineapple and/or ice lollies may help, too.
Hugs to all
Hi Alex, I had my first session this afternoon, so far am ok, am drinking plenty and have anti sickness tabs at the ready! How are you doing? Thinking of you too - and everyone else on here going through treatment x
Just another suggestion. As well as mouthwash, which I use once a day, you could try a salt water gargle and mothwash last thing at night. It doesn't have to be very salty - just dilute a quarter of a teaspoon in half a glass of water and stir. It's another way of keeping the mouth 'sanitised' and preventing soreness.
Hey Taran, glad you're feeling better, I've been thinking about you. I had a bit of a rough week too but definitely can see improvement now. Hope the next few days are even better xx
Woohoo, OnceWild! Amazing. Any photos? : )
Bella, the injections are going fine so far, you really helped me over that fear, thank you so much. I had an incredibly bad evening and night on Sun (day 5) where I felt like I had flu, was in the middle of labour and had also just been hit by a truck. I honestly didn't think I'd make it through til morning! But I did (obviously!) and although yesterday was still pretty rough, I am feeling better today. Hopefully on an upward trend now.
Dianabrew, Apple pie and ice cream! I'm not quite there yet but it's something to look forward to! Hope you have a lovely time with your parents for their anniversary!
Well done Oncewild I'm really pleased you did it I bet it was a fabulous feeling. Let the hair go and change your name to Stillwild 😀. I hope everyone is doing ok and had a good weekend. Pookie I hope the injections are going ok. Taran I hope your out the other side now and can enjoy some holiday time with the little uns. Here's to more SE free days xx
Well I did it! With your encouragement I took to the skies and flew - well down a Welsh slate quarry attached to zip wires at least. It was wonderful and freeing, and fun to do with my big son. Thought of you Taran and hope your bleugh stage is passing. My hubby thought the rushing wind might blow off what remains of my barnet but I still have a light covering. Had to hoover the pillows this morning which was pretty gross but as my hubby bravely ignored my wailing to clip it to just 2cm yesterday it could have been worse. Going to have to do a massive cleanup of the holiday cottage or they will definitely think the dog has been rolling all over the house.
Hope you're all doing well x
Thanks so much Bella and Sue. So glad for you that you didn't get any nausea Bella, fingers crossed I'll be the same. I'm going to grit my teeth and do it this afternoon when husband is back......just in case!
thanks again ladies, what would I do without you all xx
It may be an idea to contact your GP asap to get him to represcibe the drugs, which have helped you. - and if you scroll down I have added some bits of how you might be able to deal with nausea.
Don't freak re the side effects - the anxiety may make it worse - relax and see what your body does - perhaps make sure you have a good supply of painkillers to hand - just in case.
Hi Pookie I didn't get any nausea with the injections. Like you I have 7 to do, I'm quite slim so sit down and get a little roll of fat and push it in. I swap sides each day and this time I take a ibuprofen after. On my first round of injections I did all right until the last one when I got a few bone aches so this time round I am trying to pre empt and so take a tab. I tend to do it in the evening so that if I do get any side effects it doesn't ruin my day but day 5 this round and nothing so far. It is a case of grit your teeth but far better than getting an infection. Xx
Thanks Taran : ) Lucky you only having to have one injection! I've got six and have now freaked myself out by reading all the horrendous side effects.....including more flipping nausea, thought I'd finished with that and I don't have any more antinausea drugs after today : (
Hope you're managing ok with your four little ones off school, I'm guessing the house isn't quite as calm as before! My two have had a few sleepovers with friends and relatives which has helped keep me calm and them entertained, but they're here at the moment wreaking havoc! I love having them around though and hate to be without them, I feel a bit useless at the moment and can't wait to get back to being normal Mummy again as soon as possible!
Sue, you are a star for posting all this helpful information.
Personally, I prefer liquidising ginger root rather than buying commercial ginger drinks, which tend to be loaded with sugar. I liquidised a 2 inch piece of ginger root in a little water, then strained it to get rid of the fibres and kept it in the fridge, adding a little to water, tea or food. I had two days of feeling nauseous but I think the ginger helped.
I hope all of you have a good SE-free day!
Hi everyone again! I'm due my first gcsf injection today and was wondering if anyone had any tips on what's the best time to do it, the best position (I'm quite slim and don't have much stomach fat to grab). I'm not a wuss generally but have never, ever had to stab myself in the stomach with a needle before, so I'm feeling a bit apprehensive! Any advice would be very welcome. Thanks ladies. Pookie x
Do it!!! Oncewild, always wild ; ))
What a fab opportunity, chemotherapy or no chemotherapy, it will be awesome!
ooh, and on the hair thing, having cut my long hair into a pixie last week and now wishing I'd done it years ago, I'm now believing I'll feel the same about the shave when it has to happen next week. The anticipation is always worse than the event......which can be surprisingly liberating!
And thanks Taran and Nellie for your encouragement yesterday when I was feeling pretty down with the abdominal pains. I'm much better today and hope that you too, Taran are feeling less nauseous every day. I think my pains were due to the Senna tablets I took to try to avoid constipation!! That'll teach me to try to pre-empt problems!
Oncewild surely there can be no doubt get on that zip wire 😀 as long as it is safe. It's amazing how the simple things in life become so much more special at times like these and playing frisbee on the beach on a beautiful day sounds wonderful. Please don't worry about the hair, I have to say with the heat we've had I've appreciated not having any and find it a lot cooler. I tend to cover up if I'm out in the sun but the rest of the time I do go without. More so because I find it more comfortable in this heat. My 20 yr son prefers it properly bald to the 'plucked chicken' look as he phrased it when it was falling out. Get on that zip wire before the weather changes, let me know how it goes 🙂 xx
Morning everyone. Hoping you are all feeling better each day. I have a slowly building dread of my EC2 on Friday. After my first weekend I have been feeling really well, with no SEs and no remaining pain from MX and ANC, so feeling pretty 'normal'. Hoping for the best and strength to get me through the dark first days.
Although I knew it was going to happen am so sad to be shedding hair - weird how quickly it goes from none to handfuls! I have the tingly scalp you have all spoken of and don't like the strands falling into my face or tickling me from my pillow. Am going to keep it for as long as possible then clip it short. Practically I am equipped with headwear and wig but emotionally I am not ready for everyone everywhere I go to know I have cancer.
My heart is lifted hugely by being in beautiful North Wales for a week with my family. Playing frisbee on the beach with the dog last night was pretty special. I now need to brave up to going on Titan, a very, very long zip wire across an old slate quarry. My 16y old is so keen to do it but needs a participating adult and, as hubby has no head for heights, I am in the frame. Shall I?
Flopsy, sorry to hear that 😬. I can only hope it's not as bad as FEC for me, what other side effects did you get with T may I ask? Xx
I don't want to spoil your expectations ... but ... I developed terrible nausea and vomiting straight after my first T infusion .. and it has continued since.
My Oncologist did say that T is better for N&V and it hope that is the case for you!
Thanks Sue for that interesting post. I have one more FEC to go and then it's Taxotere for 3 cycles. Taxotere doesn't seem to be on your list so I'm guessing I won't be quite as nauseous as on FEC! The Lorazepam stopped the retching and took away some of the nausea but I still feel sicky. Anyway hope you are doing ok and the fatigue/ exhaustion has improved. Xx
Bella boo, so pleased you were able to go out this afternoon 😊. It makes such a difference doesn't it? Where it's so hot I keep checking my temperature to see if it's ok! Although my Lorazepam has really helped with the retching I still feel rather nauseous most of the time, am forcing myself to eat, but haven't had any of the cravings I had last time. I have no desire to eat but I know I must, I have found eating stewed Apple cold which is lovely, cuts through the nausea, I'm drinking loads and loads. I just feel so very tired compared to last time. To top it all, the District Nurse didn't come out today to give me my 1st GCSF injection so ended up having to go into hospital to have jab done there, anyway hope tomorrow will be even better for you 😊 Xx
Hi Pookie1, sorry to hear about the pains, I didn't have them after my first FEC, is it trapped wind? I don't really know, but seek advice if it doesn't go away. Wishing you a better night. Hugs xx
as some of you are suffering particularly with nausea- I hope this post will be helpful. Although it will be a very long one - sorry for that...
We all will react differently to our relevant chemo treatments and sometimes it may not be possible to avoid the specific side effects we have.
It may be wise to discuss with your GP, chemo team and oncologist - to ensure you get this as much under control, as you possibly can before your next cycle.
Nausea - tends to be worse day 2-4 - but by eating lots of little meals, especially when you start to feel nauseaus may be of help. Depending on your tast - plain cream crackers, toast, ginger biscuits may help.
Ginger generally is a good help when feeling nauseaus and has apparently also some cancer fighting properies - So if you can include it in your diet it shoudl certainly help with nausea. You could sourse one of the Rochester Ginger drinks from Holland and Barrett. They are very versatile - it can be drunk as a shot in the morning,,used in cooking, as well as making wonderful ginger tea. Otherwise there are a number of ginger teas easily available in all supermarkets.If ginger is not your thing you might wish to try chamomile tea, but not peppermint.
To help you understand better what is going on - I found this - please note not all drugs quoted are for breast cancer chemotherapy.
Nausea and vomiting
Nausea and vomiting are common side effects of cancer treatment and often occur together. About one-half of people treated for cancer will feel sick to their stomach (nausea) or will throw up (vomit). Today, there are many new and effective medicines available to help control these side effects.
The process that leads to nausea and vomiting is complicated. Doctors believe that nausea and vomiting are controlled by an area of the brain called the vomiting centre. This area may be stimulated by nerves within certain parts of the esophagus, stomach or intestines (bowels) when they become irritated. It could also be stimulated by other parts of the brain.
The types of nausea and vomiting are usually described based on how severe the symptoms are and how long they last.
Acute nausea or vomiting
Acute nausea or vomiting usually occurs several minutes to a few hours after treatment is given. It often goes away within the first 24 hours.
Delayed nausea or vomiting
Delayed nausea or vomiting develops more than 24 hours after treatment is given. It can last for 6–7 days.
Chronic nausea or vomiting
Chronic nausea and vomiting is not related to treatment. It is caused by the effect that the cancer waste products have on your body or by the location of the tumour in the body. Ongoing nausea and vomiting can be caused by:
Anticipatory nausea or vomiting
After a person has had a few treatments, they may feel anxious and expect to be sick. They connect certain sights, sounds or smells with treatment and feel nauseated when they experience them. Nausea or vomiting before treatment is referred to as anticipatory. This is more common in people receiving chemotherapy.
Nausea and vomiting in people with cancer can have many different causes.
Certain chemotherapy drugs cause nausea and vomiting, especially if given in high doses. Chemotherapy affects parts of the stomach and brain that detect toxic (poisonous) substances. This causes nausea and vomiting as the body tries to rid itself of the toxins. When given intravenously, chemotherapy drugs can bring on nausea and vomiting quite quickly. Cancer drugs differ in how much they contribute to nausea and vomiting.
Some drugs are more likely to cause nausea and vomiting than others. Drugs with a high potential of causing nausea and vomiting include:
carboplatin (Paraplatin, Paraplatin AQ)
epirubicin (Pharmorubicin) – high doses
carmustine (BiCNU, BCNU)
cisplatin (Platinol AQ)
cyclophosphamide (Cytoxan, Procytox)
lomustine (CeeNu, CCNU)
cytarabine (Cytosar, Ara-C) – high doses
mechlorethamine (nitrogen mustard, Mustargen)
melphalan (Alkeran, L-PAM) – high doses
dactinomycin (Cosmegen, Actinomycin-D)
methotrexate – high doses
daunorubicin (Cerubidine, Daunomycin)
procarbazine hydrochloride (Matulane)
- END QUOTE
Hoping it is of some help.
Hi Pookie I haven't had the pain you describe but I hope it is easing a bit and someone will be able to help out with what's causing it. Bookworm, Alex, Taran and Nellie how are you all feeling? The only thing I can say is what a difference a day makes, I feel a lot better today and have been out this afternoon. Must be first time though that I watch the weather forecast to see if it will get cooler!! Fluffy mittens I hope your feeling better 10 days is a long time to feel unwell. Sue how are you doing I hope it's not getting too much harder the further along you go. Hugs to everyone xx
Sounds like you have some great services around your area.
I got my Evonail from Farmaline here
But there seems some confusion over Evonail releasing a new version.
It looks like I may have got the last of the old version. Sorry I don't know more.