Hi all, good morning everyone, wishing all those having chemo today the best. Think it is Seaview starting if I am retaining information right.
I have gem today and have not bounced back from last week yet. The advice on the constipation has been so valuable. Thank you.
Dreading today as going in feeling sick, constipated, dosed up on sick tablets, sore gums already after the first session last week.
We will get through it!
Arnie
Julie - Just to reiterate what Belle said about the Ondansetron causing constipation. Constipation is awful! On my first cycle I had to get the emergency GP out to the house to give me an enema. For the second cycle I kept on top of the constipation by taking Fybogel and Lactulose and switching my ondansetron for cyclizine. My pattern on my TC chemo regime seems to be constipation for the first week followed by loose stools the following two weeks, it can be hard trying to find a balance.
Re: periods, pfft! I thought they were supposed to stop during chemo? After chemo one I got my period a few days early, it was heavier than usual and lasted longer as well. Thought that mine be my last one, NO, woke up this morning to another period a few days late this time.
Blueash - Again, what Belle said about omeprazole or other Proton Pump Inhibitor.
Please don't apologise for moaning ladies, I had a moan on the July starters thread the other day. It can be strangely comforting to know that you're not alone in suffering horrible side effects from chemo. We're all here to support each other.
Best Wishes
Hazel. x
Hi, I'm dropping in from February thread. I finished chemo in May, had lumpectomy in June and now having radiotherapy. Please stay strong, it is tough but doable, take whatever is offered to you in the way of medication. For heartburn and constipation I was given magnesium hydroxide which was brilliant, I still use it now. A couple of 5 ml spoons for the heartburn and 25-50ml for constipation mixed in water...it is brilliant.
Thinking of you all
carol xxx
Hi Blueash
Yes we are and great that could be really helpful to compare. I thought I was doing well too but it's kicked in now I guess. The sickness and dizziness has subsided which I am thankful for however a little but heartburn kicked in but got gaviscon at the ready. Waiting for my prunes to come... woo woo never thought I would be so excited about dried plums lol.
I do find so much help on here you all are truly amazing and inspirational and all I can say is thank goodness we have each other... (((hugs)))
Julie xx
Julie, you and I are having our treatments the same day so we can compare. We are having different regimes though, mine will all be TCH x 6. I have been given lots of anti sickness pills but so far have not needed them.
Don't worry about having a moan on here - that is what we are all here for to give and receive support/hope/inspiration.
I hope you feel better soon xxx
My worst day so far! Had my TC last Thursday and came home with the steroids, the first couple of days were not at all bad and I thought I was coping rather well. Today I just had to go back to bed because my legs would not hold me up! I feel OK mentally but about 95 physically! Everywhere is aching and I cannot do anything so went back to bed, I got up an hour ago and washed and dressed. Only because I was afraid that if I stayed in bed all afternoon I would not sleep tonight.
I also have the most dreadful heartburn and am going to ask for something a bit stronger than Gaviscon.
Thank you Belle, appreciate your help and support so much, nice getting advice of how things work for people from their own experience. Yes periods awful at the moment making it feel 10 times worse I guess.
Daughter going out for prunes and fibregel and I will deffinately contact if nothing happens this afternoon, thank you again Belle.
Julie xx
Hello to everyone
I'm sorry I think I am going to have a moan today... I had my first FECT on Thursday all going well however now on the steroids which I finish today.. I'm not sleeping very well as im so tired, I'm constipated too which my stomach is hurting so much I'm trying peppermint tea and all bran to see if that works.
I had the marina coil taken out as advised but now I'm having to deal with periods, my emotions are all over the place and very very tearful. Its driving me mad as I usually just get on with it and no doubt driving my family mad. Sorry for moaning guys.
I start the immune boost injections tomorrow so I'm so hoping that will help my moods and emotions and give me the lift, goodness I'm crying as I write this...
Hope everyone is holding up and hugs to you all
Julie xx
Hi all fellow August chemo starters,
I have been quiet as I have yet another infection, following mascecetomy. Went to start chemo but no picc line so as my veins are bad they delayed starting it for a week. A quick moan and lots of tears with fear picc line put in. Had my first cycle of gem/carbo, so different from some of you on Tuesday. Felt really nausous but unlike some of you have eaten food, small but often and with great effort. Steroids kept me awake and today I am so tired. A real effort to sit in the garden and have a green tea. Dazed, feel like a bad hangover without any fun. Also lots of randomn tears so hormones must be feeling it today. Back on Tuesday for next one.
Advice has been so useful so thank you. I have 11 chemo hits left, 5 cycles left.
Big hugs to you all
Arnie x
I slept for 7 hours last night - so I hope that continues.
My husband and I managed to concoct my injection of Lenograstim 34 million. We had to mix the syringe full of liquid with the powder in the little bottle using the large needle. Draw the mixed infusion back into the syringe with the big needle then and most important remember to swap the big needle for the small one prior to injecting it into by belly. We did it and it was painless. Now that the first one is over the next will be far easier in terms of apprehension.
I have a metallic taste in my mouth and slight heartburn but otherwise I am not too bad. I have been sucking on my prodentis lozenges last thing at night after tooth brushing and my mouth is not dry or sore.
I mentioned prodentis lozenges on another thread when someone asked about help for her mouth. My sister-in-law had chemo a few years ago and her mouth was dreadful so they gave her those. I bought them myself from amazon (about £20) to try and prevent ulcers/thrush from getting a hold.
Hi Scarletbea
Thank you for reply. Yes the heady fuzzy thing is a little strange and you are right a sensation of fainting.. I am on the same chemo as you.. I woke this morning at 3.30am feeling very sick and dizzy had meds and it's starting to ease a little now. Managed to have my porridge and started steroids meds too so let's see what tonight brings.
1 down 5 to go...well done to us all and everyone going through or been through treatment.
Hugs to all
Julie xx
Sue, thanks for showing the link between sleep patterns and steroids, it seems to be true since I now stopped taking mine and I'm slowly returning to 'more normal'.
I honestly didn't care at the time, if I was sleepy I slept, if I was wide awake, I was trying to do something, regardless of the time of day. I think forcing yourself to keep "normal" hours ends up being much worse.
I am feeling much better, yes thanks 🙂
Julieg, "feeling a little heady or fuzzy" was also my constant for the first 5-6 days. Like I was going to faint at any time.
And Sue, saying "every single one of us may have different side effects and sometime hardly any at all." is so true! And nobody can really tell which ones will be yours until the first cycle. Hopefully my doctors will have learnt a bit better what meds work/don't work for me, and next cycle will be a bit 'smoother'
(by the way, I did cycle 1 of 3 of FEC, then I'll have 3 of T)
Hi blueash,
popping in from the May thread - hope you don't mind.
Your disrupted sleep pattern is likely to be caused by your steroids. Once they are stopped and wear off - your sleep pattern might change again.
Thank you also for your post and support on the other thread - it will help her to understand that it may not be quite as challenging as one may imagine. Hopefully she feels able to join this thread to gain the support that is so helpful.
Hope your se's stay managable!
Hugs
Sue xxx
Yesterday was my first of 6 docetaxel and carboplantin - with Herceptin thrown in but a query on that at the moment.
I had a sleepless night which is hard for me because I usually sleep for 8 hours and never get up for anything.
I was still wide awake at 1pm and I usually wind down by about 10 pm. I finally forced myself to go to bed - I have been sleeping in the spare room since surgery because my husband was afraid that he would turn over in his sleep and bash me. I dozed but never went into a sound sleep so I got up at about 5.10.
I don't feel dreadful but I don't feel right either, I would liken it to jet lag.
Hi everyone
My day was today... because of this forum i was well and truly prepared so thank you to you all.
I'm not feeling too bad I think! I actually don't know how I feel but know I don't feel right.. feeling a little heady or fuzzy, very strange sensation.. but overall I am doing OK. Brought a pharmacy home with me to get me through the next few weeks.. the nurses were amazing and my whole experience was a very positive one.
Big hugs to us all going through the same, and thank you all 🙂
Xx
Hi debscoops,
Welcome to the August thread! - I just popped across from the May thread, so well ahead of you.
So good to read that you have prepared so well.
Of course you are worried at the moment. Like you I waited for the side effects - much to my surprise, only bad constipation, which I resolved myself and some dizzyness shortly after my first treatment. And of course, the one none of us seem to be able to avoid - cumulative fatigue. But I am still working for two weeks out of three - just - but I am working.
It just shows that every single one of us may have different side effects and sometime hardly any at all.
So much depends on our individual age, state of fitness and underlying health issues.
Fingers crossed for you on Saturday - let us know how you get on.
Hugs
Sue xxx
Annietre, Scarletbea, Bluefizz - hope you are all feeling a bit better now.
Blueash - I'm also on TC & Herceptin by injection.My "C" being Cyclophosomide. I have two cycles, next one due next Friday. Having four in total. I don't a picc line and am not cold capping. Wishing you minimal side effects.
Debscoops - Good luck for tomorrow and Saturday.
H.x
Hi, my day to start chemo is nearly here, Sat 13th ! - having PICC line put in tomorrow and bloods etc etc, I have been reading your stories, and I am quite anxious, I have been buying ginger stuff ready, mouth washes, toothpast, bongela. I only hope that I can cope, but I am trying to think of it as a means to an end, as having chemo is my choice, after my Oncotype DX results were intermediate risk. I hope I will be able to update in a few days on how I am, but I am really pleased this thread is here Thank you, this is one exceptional journey that is very hard to describe to other's not affected by cancer. Deb
Had my first TC today which was a change of plan! I was supposed to have Picc line and then a loading dose of Herceptin. I had the Picc line but there was a query on my Echo scan and I have to see the consultant for his approval. They said I may as well have the chemo or else I would be delayed a week so I agreed but because I was unprepared I did not have a towel for the cold cap. I did have a wide tooth comb plus I had just bought a headband and conditioner so we went ahead and I phoned my sister-in-law and she brought up a towel. Since I did not have any oral steroids I had them via the drip before the chemo and have tablets for tomorrow.
I did not think the cap was too bad, not nearly as bad as I was expecting. The Picc was a doddle and makes their job so much easier - they should offer them to everyone. They give you a local anaesthetic so you don't feel a thing and it takes about 20 minutes. Then you go for an xray to make sure it is OK.
I will let you know about side effects when the happen.
I am finding lollies are a godsend gives loads of relief , has anyone had a cough after steroids finished ? mine is easing today but i have been getting loads of gunk up ( sorry ladies ) xx
hey all
They changed my nausea tablets, said my potassium levels were low and *told* me I really must be drinking much more than I was.
I managed much better afterwards - not sure if for the words, the water, the care or the hugs from my friend who went with me yesterday (I'm *going at it alone*)
And I'm getting a 'pre-chemo nausea treatment' already for next cycle, fingers crossed it works better.
Due lollies really help? I have magnums in my freezer but I've been scared of having any - now I wonder if water-based lollies will be better hehe
hugs all xxx
Hi, Hope everyone is coping this week my journey so far 3 days post chemo not too bad then 2 days off feeling rubbish no nausea just very sore mouth and sooooo tired .Have given myself a kick this morning gone to shops and am now sat sucking a fruit pastille lolly i really hope thats the worst is over this cycle . heres to the next few days stay well xxxx
Glad you made it to the toast Scarletbea! I'm still on a limited diet but my new drugs for nausea and vomiting have made that a whole lot easier. Was sick all through 3 x FEC and 1 x T&H....
Hope you can progress from toast to real food soon!
My hospital keeps weighting me so I thought the dose would be related to that but would love to know if you get an answer. It may vary though on which drugs we get?
Gosh, day 6 and I finally managed to eat a piece of dry toast yesterday!
Lost lots of weight but don't recommend it as diet 😉
Nausea seems to have almost gone,but I'm still scared of eating 'normally'.
Now it's just extreme tiredness and very tingling legs - could it be due to the white cells growth injections?
By the way, does your weight affect your chemo dosage?
I think they noted down a very high weight when they checked the first time because I was dressed, wearing shoes, etc, and I wonder if I got too much on this cycle 1...
I'm going back to the hospital tomorrow afternoon for flushing PICC line, so I hope to ask all this stuff then.
(note: I honestly don't know how some people can say that losing your hair is the worst side effect... only if you're speaking before your actual cycles...)
Annietre,
Hope your team can sort something out for you. I did 3 x FEC and then 1 x T&H with terrible nausea and vomiting (and lost of other side effects). Colitis sounds awful.
When I started T I asked my Oncologist for a reduced dose plus during the FEC's I went from a 3 weekly to a 4 weekly cycle as I was not recovering. For me the SE's were culmulative.
There are at least 6 different ways of tackling nausea and vomiting (like 6 different pathways). I ended up with a combo of 3 drugs from 3 seperate pathways. When we found the right combo in the end it made a big difference but there are then the side effects from the drugs for the side effects.
Hope your digestive system calms down and you can eat something again soon.
Hi I started TCH last Friday , delay on H until Monday last. I took everything offered and have never felt so sick, extra anti sickness from gp left with a permanent burning. I have colitis which has gone into melt down , finally today 9 days on I ate something ! Muscle pain is still quite keen, think I will have to talk through all the SE with team before next dose. I feel such a wuss but was ready to say that it wasn't worth the pain. SCarletBea I hope you are feeling better . Ani x
Hi lesalanos,
So sory to hear that your partner is having to go through all of this again. But at a guess they may be able to tailor her treatment this time to suit her challenge more directly.
I wonder, whether it would be helpful for Claire to join the thread herself, as we women have a slighly different way of approaching things, than men often have.
In many ways we may not always be as practical as many gentlemen tend to be, however we support each other very much especially on the emotional front.
We share so many little laughs and the forum is also a great place for us to vent our frustrations and emotional state - to receive support from our fellow 'travellers'. It is immeasurable support, as it is from women, who really understand. Most of those us arround us, although having been touched by knowing someone who has been diagnosed or is going through treatment, are very sympathetic and supportive. But in my mind, there is nothing quite like going through treatment yourself to truly understand what it means to us, particularly being a woman.
So, perhaps, it might be a thought to encourage her to join us here, so we can support her directly, too.
Sue xxx
Hiya to all going through treatment and those who have gone through treatment... well done to you all! I myself will have my first chemo of FECT on Thursday 11th which Is the FEC part for 3 cycles then the T for 3 cycles.
We all will obviously have different side effects to the treatment but reading all your posts have enabled me to prepare as much as I possibly can and they have helped me so much knowing we are not alone on this journey.
I really enjoy reading your updates of how you are all doing and feeling, thank you! (((hugs)))
Julie x
@belle wrote:
Hi ScarletBea,
Make sure you take all the anti sickness tablets you've been given. And don't be afraid to call your chemo helpline if it gets bad - there are lots of things they can do to help. My first cycle of FEC was really bad with nausea and I had my anti sickness tablets totally rejigged for my subsequent cycles and it's much more manageable now. So don't suffer in silence. Meanwhile, try ginger - anything with ginger in. And eat little and often. It feels counterintuitive to eat but it really does help the nausea.
Hang on in there,
B x
Thanks Belle.
I did call the helpline, and they told me to continue with the tablets for another day or so, and see what it comes to.
I can't eat, I throw up anything that goes in. Yesterday it was even a glass of water.
Today I managed cold milk (for the tablets), but then the ginger biscuit I ate later came fully out, so I'm giving up on food for now, the nurse also said the same.
I just had another throw up case, but I've got nothing in my stomach, so it was simply lots of dry heaving 😞
I also don't have a single position where it doesn't feel bad. Lying down seems to still be the best, but I don't last long like that.
Hi all , had my 1st fec yesterday was a long day but i must say the wonderful staff made it very easy for me . Apart from 3rd time lucky in canulation and i feel a little odd on the whole am ok . Taking anti-sickness and steroids for a few days so lets see , hope everyone else is getting on ok too xxxx
Hi,
I am so sorry that you and Claire find yourselves in this situation. After so much it is a real b*gger to be back in treatment. I don't know if you know but there there is a secondary breast cancer forum that you might find really helpful: https://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/ct-p/secondary_breast_cancer and also another for partners: https://forum.breastcancercare.org.uk/t5/Partners/bd-p/Partners Also, every Tuesday evening between 8 & 9:30pm there is a Secondary Breast Cancer Live Chat: https://www.breastcancercare.org.uk/information-support/support-you/someone-talk/live-chat
Hope that helps.
I do wish you both all the love in the world,
B x
Just popping in to wish all those just starting chemo all the very best. I'm from the January thread and it is all now becoming a distant memory.
its a daunting prospect when you start, but strangely it does go quite quickly as you are living in three week cycles. I kept focused on the end date and did everything I could to stay as fit as possible through treatment. It's hard but I was surprised that there are weeks when you feel pretty well.
the nausea is tough on FEC. I took all the anti sickness tablets and drank loads of water. Luckily no nausea on T.
I cold capped which was incredibly tough, but I'm glad I did it as I didn't lose my hair. It thinned and I've had it cut short, but now it's very thick and growing fast.
Im now 13 weeks post chemo. I've had rads too, but I now feel pretty fit and well.
Goood luck to all of you. The August thread will be a great source of support.
love and hugs,
clsire xxx
Gawd I just feel so sick/nauseous....
I had my first round of FEC earlier today.
I was feeling fine, then bang!, tired, headache and awful stomach.
Took one of the tablets and I'm sipping cold water with a bit of lemon squash, it seems to be helping.
Argh.
Oh, I'll have to give myself injections for 7 days, starting saturday 😞 eeek! At least I got the district nurse to come on saturday to show me how to do it.
Also ended up not going ahead with the cold cap. The side effects stated in the leaflet seemed too much, and losing hair is way way down my list of annoying chemo side effects.
@julieg2106 wrote:I have ordered hat and scarf combo and got them today, they are really lovely. Site also has headwear not just wigs.
Hope this helps x
www.wigs4u.co.uk
Can highly recommend the plain anna hats from wigs4u and they are the best ones I've bought for a reasonable price, I use scarves etc around them and people always comment how good they look.
About veins, they are puting a picc line in me before I start. They said that since they can only use one arm they would recommend I have a picc line so I said yes. I will have to go to them in between chemos so they can clean/flush it. So they are putting the picc line in next Thursday and giving me the first dose of Herceptin and then the next day I get the TC. They said I cannot have it all at once because the first dose of Herceptin is a loading dose but at round 2 I will have them all on the same day.
Just back from my pre chemo check and tomorrow I am having a CT scan then before next Thursday they have to get me a heart echo. Then next Thursday 11th I am having a picc line inserted and a loading dose of Herceptin and on Friday 12th my TC starts.