Thinking of you Louise and sending healing wishes and lots of love xx Fairie ❣️
Louise ,,sorry to hear this , it is horrible when you feel so unwell . Mouth and bone pains I can understand from own experience and going through. I do find the morphine help me for the bone pain they also gave me to go along side , slow realising morphine table ( tiny) that helped keep pain at bay all through night . I would do bone injection 6. 30 paracetamol then morphine table 8.30 then morphine liquid 10.30 ish . It works for me but every different. Great news on scan they say scar tissue hates the chemo drug and you can get a lot of pain , lumps and discomfort. You must also be glad work all sorted one less added worry on the brain .
@Louise65 This is such a very tough journey, isn’t it? I am so sorry you’re feeling so rough. I’m feeling really rough too as had chemo on Friday. It’s my penultimate one and I cannot wait for my last one on 22/10. I guess we just have to think that the more treatment we can tolerate now, the greater the chance of the cancer being gone forever. Your weekend away sounds wonderful. I’m going to plan something for after my last chemo too. Anyway, big hugs and together we can do this. 😘 🤗
Hope you are all keeping as well as can be. I havent been on for a while been feeling pretty low.
Finally have work sorted now and wont be returning until chemo finishes next month. I saw the breast consultant last week after a month of worry, they did an ultrasound as well and all ok the pain ive been experiencing is scarring and the new drug. I have 4 sessions left and am so ready for the end. I currently have a cold and mouth full of ulcers. After speaking with my oncologist and being given 3 lots of meds for oral thrush and also oral morphine for the bone pain i go down with a cold!!! He has agreed for me to have my radiotherapy beginning January so i can get back into work and build strength up ready. We have a weekend booked at seaside once chemo finished and i cant wait it will be first time away this year.
Wishing you all well.
I am on week 2 of my 3rd (& final) Docetaxel. My 2nd cycle was my worst. This last cycle has been much better. Almost like my body has learnt to put up with it. I had the usual attack on my bowel for days 1-4 and I have had some jaw/tooth pain this time but mild.
My onc did reduce both my 2nd and 3rd doses by 20% as the first wiped out my cells and put me in hospital.
I hope your 3rd session is much better. It’s difficult to tell as we are all different but just wanted to share my positive experience with you in the hope that helps in some way. Wishing you lots of good luck with your treatment.
On week 3 of my second docetaxel and have managed to do some work, but mostly in bed. So I’m pretty fed up about that and it’s giving me back ache. But I just don’t seem to have enough energy to stand or walk around much. Still, only 2 more rounds to go-ha ra! We’re nearly there! Did anyone have a better round 3 or 4 on docetaxel or is that a daft question lol ? Xxx
@GonnaGetThruThis How lovely that you were able to attend your friend’s wedding. Treats every so often really help to boost your morale, don’t they? As does having a sense of normality.
Well, I had my penultimate chemo today so this time in three weeks I will be able to ring that bell! I am so glad to have the end within touching distance and it is really helping me psychologically when I have uncomfortable side effects.
How is everyone else? Did anyone else have treatment this week? Sending love and hugs as always. xxx
I was so happy that i was able to go into London yesterday to attend my friends wedding. When she booked it a couple of months ago we literally had no idea how I would be so it was amazing to be able to go and pretty much feel normal. I even had 2 small glasses of bubbles. First drink that ive had since end of May before treatment started.
Had my weekly bloods and assessment today and we spoke about my lack of sleeping. I have now been prescribed an antihistamine from the GP as traditional sleeping tablets dont seem to work so she wants me to try them the next 3 nights and report back on Monday. Ive come to the conclusion that sleep will jsut not be great until this is 'over' and you know what, as crappy as that is, I still feel i am getting off really lightly with regards to other side effects so I'll try not to complain too much!
I've noticed that food is starting to taste differently and even the water has an odd taste to it. When the nurse asked if this was impacting my eating and drinking, i laughed and said no chance of that!
Hope everyone has a good weekend and remember we are all another step closer to the end of this tough time.
Hi @JessicaB , I am sorry to hear that the Docetaxel is harder on you than the FEC was. I have all the side effects you have listed but for me they are not bad compared to how I was on EC where I was just in this horrible state where I couldn’t eat or sleep and couldn’t concentrate enough to watch tv for days on end. With the TCHP regime, I only have one or two really bad days where the tiredness, headache and severe nausea hit all at once, but otherwise I am mainly just tired. I don’t like the bad taste at all, but that seems to get better after a week or so. I think you are right that we all react differently and you can’t really compare one person’s experience to someone else’s. I do hope it gets better for you. If you get any pins and needles or numbness in your hands and feet I’m sure you know that you need to let your team know as they may lower your dose.
I had to decide about which surgery to have quite soon after finishing EC chemo and I remember thinking that I just did not have the ability to digest all the info. Fortunately, I knew that I just wanted a simple mastectomy without reconstruction so it wasn’t too complicated a decision.
Congratulations on being over halfway. I think that’s huge psychologically. xxxx
Hello lovely people!
I have been keeping up with your news/posts but not managed a reply until today.
My last chemo was a change from FEC to Docetaxel. Tomorrow is my next session. I have found Docetaxel harder than FEC. It seems to me almost impossible for the health care professionals to prepare you for this journey as everyone reacts differently and for some Docetaxel seems easier than their previous drugs.
But I found I was much more tired, I had taste changes (just ebbing away now), odd feelings in my fingers (but not tingling) and rashing between the thighs (although this could have been combined with hot weather). I will be better prepared this time I hope.
Whilst I have not had any crashingly low moments I am super glad to be over halfway now. I know I have to have more surgery - reconstruction and at the moment I haven't found the energy to research this part of the treatment in any detail and my breast care team didn't want to discuss it at the beginning of the treatment.
Eyebrows are hanging in there just but for the most part I havent used make up much, however when I do, I do feel better about myself so may be I should take the extra time.
I wanted to say just how well you are all doing, finding happy moments amongst the rubbish that this is. So proud of you all.
xxxx Jessica xxxx
@Flower123 My third Covid jab was almost 6 months after my second one. I just asked for it a week early as next week is chemo week and I was told by my oncologist that it is best to have the jab in the third week of my cycle. I get the hot flushes too but they are definitely worse on the days I take the steroids. My suspicion is that it is the higher dose of steroids which is to blame but I suppose it could be the Docetaxel. In general, I have been hotter at night so have switched to a summer duvet which has helped. My hot flushes seem to have settled down over time (remember I started chemo in February). I have also heard that antidepressants can help with hot flushes and I have been on them since March.
@Impatience lovely to hear from you Imp.
Congratulations no more chemo sessions left 🎉🥰 what an amazing feeling that must be .
No I didn’t have this in FEC but have to say the side effects for me are so much manageable at the moment on Docetaxel. Yes certainly got very bad in the second round of Docetaxel but this could be that I had 100% this time instead of 80% due to infection! It’s just nice to hear that it is ok and nothing to extra worry about as you feel ohh god not a hospital visit!!!! I to will be doing hormone but after second operation, and start of radiotherapy.
Re your question about nighttime sweats. I’m exactly the same. They seemed to start when I began the Docetaxel. I wake up soaked and very warm. I didn’t get them whilst on EC
I had my final chemo session last Thursday so I’m hoping this may ease. However I’m due to start hormone therapy (letrozole) in a couple of weeks which have night sweats as a side effect. Hey ho these things are sent to try us!
It is really good to read that you only have one more to go. Despite feeling grotty for the past few days I am coping in the knowledge that I won’t back in the chemo lounge in 3 weeks time It is a good feeling!
Wishing everyone a good week
@hopeful1974 That’s is a great feeling knowing 5 is underway and we both only have 1 to go! Can I ask with the Covid booster was it 6 months from your second Covid injection??
@Heels to walking boots @I am not to bad Thankyou very tired today and bone pains from injection which pain relief and resting helping.
I have starting especially over last few night being soaking wet sweat over body needed shower in night .I do get hot flushes but this is extreme /medication steroid/ chemo trigger? . Any one have this or got tips to relief.? Did go for a walk yesterday late afternoon and think I pushed myself a bit hard !!
Sending love everyone looking out my very rainy bedroom window
Hi @Heels to walking boots , Lovely to have your news. I’m glad to hear the iced booties seem to be working. I used mine on my last cycle and I definitely have had less neuropathy although I did have 20% less Docetaxel too, so that may have also helped. I’m actually looking forward to my chemo on Friday as it will be number 5 out of 6. I just want to be able to tick it off and then only have 1 left. I had my Covid 3rd jab on Friday and felt a bit ropey on Saturday, but have otherwise been fine.
Sending love to you and everyone else. xxx
just back from chemo and feeling a little woozy but apart from that all good. I am ready for the rash which tends to appear on day 2 and 3 and seems all manageable with antihistamines so that’s good. No tingly fingers so I think the cold gloves and socks are doing there job. So thank you Sian @hopeful1974 for the recommendation!
@Flower123 I hope symptoms are still mild and that you are feeling well post chemo!
@GonnaGetThruThis fantastic news that they can’t feel the mass! Such wonderful news!! Did the surgeon discuss what type of surgery you will be having? I am hoping if all sticks to plan that I could too have surgery before Christmas but I don’t have an appointment until 1st December to discuss. So not sure if that will happen. But I guess that will give them time for Scans to take place once chemo is over. I just would like to know what the plan is ..as I am a bit of a planner and not knowing makes me anxious.
hope everyone is well? @Trowster hope you managed to get away? I thought of you at the weekend as managed to bike rides which was great.
lots of love to you all!
@GonnaGetThruThis So lovely to hear such good news on the lump . Always fells good when things start moving in the forward direction .With regards with Neut I had second chemo and had my at 0.5 so hospitable stay and 20 bags of iv antibiotics!! Then from then on they put me on extra bone marrow injection so 5 to 7 and touch wood have done the trick. Mine is normally 2.5 / each time now.
I am waiting for appointment to see breast consultant for operation should be in post next week . ( This if all gone well is going to be for extra margin removed as after lumpectomy and lymph remove still a few NON active cancer cell in breast, but had short window to start chemo so that came first then little op second ) .
Had chemo Frid and so far very mild side effects here’s to another good day hopefully.
Hope everyone else staying strong and still enjoying this weather
love Jennifer x
@GonnaGetThruThis That is such great news about the lump feeling so much smaller. My neutrophils were at 1.9 before I started chemo and have historically been around that level. During this chemo, I have dropped below 1.5 twice and had to have extra G-CSF injections to get them back up as they didn’t go back up on their own after a week’s delay. My chemo doses were lowered as a result and the last time round, my neutrophils were back up at 2.9. 1.5 is the cut-off point - below that and I am not allowed chemo. I would imagine it is the same everywhere, although you never know. I didn’t have an MRI before my op, just an ultrasound, which didn’t show up the size of my DCIS which was bigger than they had thought. I imagine an MRI is more accurate. I was very glad I chose a mastectomy over a lumpectomy as I would have had to have a second op to get the DCIS out in the end anyway.
It is great that it may all be done by December. I found that after the first week after the op, I felt well in myself. I was restricted in what I was able to do for several weeks but as long as you have some people running around after you, you’ll be fine! xxx
So busy day yesterday. Surgery consult at 9am at one hosptial, blood test at 12 at my usual hospital then back at 5pm for the MRI (not sure what i wrote the other day to think it was earlier sorry).
As expected after a chat with my BCN friend, he said ideally I would had already had the MRI or at least they would have seen me after I had it. It wasn’t a wasted trip of course as I felt that as I hadn’t seen any Dr since the beginning of June and after EC2 that it was good to have a chat and ask questions. (My Sep 8 app was cancelled and they hadnt rebooked). Most importantly for me was that he examined me and he said 'I CANT FEEL A MASS AT ALL', so this was very good news. The last time the Dr felt me she said she could feel a softer 1cm mass. He said he could only feel a node or nodule of breast tissue or something like that, but not a solid mass! Anyway this was good news and shows the chemo treatment is doing its job.
We talked tentatively about surgery (he wouldn't comit on type of course till after the MRI results) but he said that he would book another appointment for about 4 weeks time (coincidentally the digital letter came through and i have an app in 4 weeks) to discuss it all and see how many sessions i have left and what will happen. He then said after chemo is finished there will be a final appointment to confirm everything, then bloods taken (importably WBC must be above 3), then an ultrasound to connect a wire to the clip thats in there. He said all going well the surgery can be booked for within 1-2 weeks of this appointment!!! i am so hoping for this stage to be over before the middle of December.
I have been charting my blood results and see a slow decline in HB, WBC and Neut so want to discuss this when im back on Monday for treatment 6/12. WBC started at 6.3 and now 2.8 and Neut was 3.7 and now 1.9 (well both as at last chemo so i will see on Monday). not sure of the limit but i suspect Neut has to be above 1 and i can see that happening soon so will ask about the injections etc. Has anyone else noticed this decline?
Apart from that Im doing ok. sleep is still rubbish (even taking half a sleeping tablet) which means im tired constantly but at least it isnt the crippling fatigue. i did try a full tablet but it didnt make a difference and i also felt groggy the next day.
Hope everyone else is keeping well.
Hi. Re @simplyeye I’ve had 4x2 dex steroid for 3 days this round, followed by 2 days of 3 a day. The dex made me feel arsey, miserable, tearful and doom laden. Then back to normal emotionally once I finished the steroids. Although the dosetaxcel SEs have lasted longer this time-pretty much in bed for 10 days. Has anyone else had this experience on dexemethasone?
@Flower123 Hope all goes well today!
I also took Aprepitant zentive with chemo and that kept the sickness at bay.
Hope everyone else is well
@simplyeve @Thank for reply , I just find it strange as touch wood I have not had any sickness from the start of chemo but have taken Aprepitant zentive on day chemo and for 2 days after .
Enjoy your weekend hopefully a bit of rest for you and think the sun will be shining.
Everyone wishing you all a good weekend too
Love to all
@Flower123 sorry for the late reply I too take 4 steriods am/pm the day before, day of, and day after my treatment. Then I take 2 each morning for the next two days they are to help control my nausea. My main reaction is not settling to sleep well and I get very emotional/naggy and tearful but overall it’s better than the nausea/sickness. I’ve been on them since my second treatment. Oh and I haven’t gained weight in fact lost about a stone and a half overall but had it to lose in the first place. Good luck today.
Hope everyone else is well from a very happy and exhausted (it’s a good thing!) grandma!
love to all
@Flower123 Wishing you all the best for today. I hope you can manage a nap today during chemo if you didn’t sleep that well last night. xxx
@hopeful1974 @Thanks for the reply. That must be what it is as had a bit of a reaction to last chemo drug . As you can see I’m not sleepy don’t feel tired, and need a wee very frequent.
well time to put on brown noise to help the mind !! Early start tomorrow leave at 8 for chemo . X
Hi @Flower123 I have to take 4 steroid tablets twice a day the day before, the day of and the day after chemo. They make me feel a bit weird and make it hard to feel sleepy in the evening, so I take Lorazepam to combat that. The steroids also seem to make me gain weight, but there is no choice - I have to take them in case of an allergic reaction to the drugs I am on. xxx
@Heels to walking boots So sorry to hear you have been unwell with a flu/cold. Glad you were able to have treatment still . 7 more to go that’s brilliant!!!
@GonnaGetThruThis @Hope all went well with MRI scan never had one but been told it is quite noisy. I had a PET scan which was quite but very cold !
Hope everyone else managing any side effects/ getting out in between treatments.
I have 5th chemo tomorrow 9.30. Today I had to start steroid 6am 4 tablets 1pm 4 tablets then same frid / sat then sun/ min 6am 4 tablets then stop . Anyone had this amount and did it cause any problems ??
Take care Jennie xx
@GonnaGetThruThis Hope all has gone well with the MRI.
And I hope everyone is doing ok and those having treatment today or tomorrow that it goes well!
hope everyone is having a good day!
sorry I haven’t posted in a while I caught a cold (thankfully not COVID) just having my first paxcilitaxol which made me very anxious and I was worried it would disrupt my next chemo . Luckily it did not even though I am still full of cold. However I have picked up a new side effect which is a rash and richness with this chemo ..has anyone else experienced this? I am little worried this may be a delayed allergic reaction.
On brighter note only 7 more to go yay! And it’s so great to hear that so many are nearer the end of chemo.
I still will also need surgery and radio but so far I have no clue when that will happen but I am relieved that everyone saying surgery is the easier part of this which is reassuring.
@simplyeve hope you are enjoying time with your daughter and grandson.
@Louise65 hope all went well with oncologist and hope they were able sort something out with your work to make it easier for you.
@chynadoll Hope your start with EC goes well ..I found it wan’t as bad as I thought it would be and just first week I was shattered and had a few headaches but started to feel better by the 2nd week. I found the steroids played havoc with my emotions but this group always helped with my spirits.
@hopeful1974you mentioned about your skin and I was wondering if you have heard or tried Kate McIver ? I believe a he had breast cancer and developed this skin range to help with the side effects of chemo. I have been using it and found it really good:
sorry for the long post ! Thinking of everyone!
@chynadollTN here as well hence the same treatment plan. From memory Louise is also TN and also negative for the gene mutation. I recently joined a FB group if you're on there and interested in getting more information or jsut generally chatting to other ladies going through the same. Its called (oh the link went big but if you click it should work or search for this).
Triple Negative Breast Cancer UK and Ireland (TNBC) Support
Oooh exciting (ok odd but i think you'll all understand) .
Just received a call from the hospital (private number, I always used to avoid them but now I know it is usually always the hospital) and it was a lady from the MRI department saying she had a referral from the Dr (the one who I was supposed to have my recent update with but it was cancelled) and could I come on Friday 4.45pm. Good timing as Friday morning at 9am we have the first breast surgery consultation so it seems like they are getting everything ready for ‘the next stage’. I'm not due to finish the 12 x P till Nov 8 (assuming i dont have to have a break) so surgery wont be till the beg/mid December but its still good to see that things are moving along.
@chynadoll I am now on TCHP (Docetaxel, Carboplatin, Trastuzumab and Pertuzumab). It has been much easier for me than EC was, although it is also known as quite a tough chemo regime. I was really worried about it before I started as I had only read that people find it very hard to tolerate, but have been pleasantly surprised. I hope that the same happens for you with EC. I have two chemos left now and then will be continuing with the targeted therapy drugs (the H and P - Trastuzumab and Pertuzumab) every three weeks until June next year, but I agree with @GonnaGetThruThis that the chemo is the toughest part of treatment. I found the surgery a walk in the park in comparison. I will not be having radiotherapy so can’t comment on that. xxx
thank you both so much for your lovely words, I'm so happy we are all starting to come through this.
@GonnaGetThruThis I like you am also having surgery and then radio, triple negative so not really a choice 🤷♀️🤣 but yes I agree I think chemo will be the hardest part. I'm so happy you are half way through too, it makes it feel like the end of this leg of treatment is in sight doesn't it.
@hopeful1974 yes I agree covid is the big worry right now, but I'm over cautious with everything anyway and overthinking everything is my achelies heel, its surprising how a 'normal' thing such as a flu spray raises so many questions when you come to find yourself in this position though. I'm sorry to hear you had a hard time on EC, hopefully whatever you are on now is treating you kinder, how many more treatments have you got left?
@chynadolllovely to hear from you and yay for being over half way. I just calculated that after Monday's treatment i am also half way (through chemo). Ive had 3EC and 5P and 'only' 7P to go. i know after this there is surgery and then radiotherapy but from everything ive read and heard, the chemo is the hardest part.
As for EC it was defintely harder than the 5 weeks of Pacliataxel i have had. Although saying that, and i know i did a write up about it here a while ago, personally for me i was absolutley fine for the first 3 week cycle, the 2nd cycle i was tired in week 2 and the 3rd cycle i was exhausted in week 2 and had 2-3 days where i couldnt function. BUT that was literally it, apart from that i had no other side effects and omce i was over it weeks 2 and 3 of all 2 cycles were fine. i know this isnt the case for everyone though.
Re the flu nasal spray, I hadn't really paid attention to the fact that it was a live vaccine and the impact it would have on us because as at last year whehn my daughter had it at Primary 'this' wasnt an issue. i have read up about it now and you are right in that it isnt recommended for children living with an immunocompromised person as there is a risk of them shedding the virus. As for whether your kid should stay off school to minimise the risk further then that would be a medical persons call for sure and one i will also have to ask as well.
Just seen its time for the school run so no more time to write x
@chynadollCongratulations on being over halfway through! It is a great milestone. I had a tough time on EC but I know many others who didn’t find it as bad, so it is very individual. Just remember that your oncology team are there to help you if you do experience tricky side effects.
I had the same thing with my daughter and the nasal flu spray. I was told that she should be able to get a non-live flu jab later in the year. I am not keeping her off school but maybe you want to check with your oncology team or GP if you are worried. There are three cases of Covid in her class at present so I’m more worried about that. She and I did PCR tests yesterday even though we don’t have any symptoms as her whole class was asked to. I’m trying not to worry too much though as the nurse on my chemo ward said they haven’t had any problems yet with any of their patients and Covid.
Wishing you all the best as you move to your next treatment. xxx
Hi all, sorry I haven't posted in a while, life, chemo delays and all the rest of it 🤷♀️ hope your all well! I've been delayed twice on my treatment which has been gutting as I feel like it's pushing and pushing my end date further away. But last week I had my last dose of carboplatin and abraxane (think thats the P part of the treatment) so I'm over halfway through my treatment now and did I cry a few tears of relief! Side effects have been manageable, mainly sickness more than anything which came with no warning signs what so ever 🙄. My next treatment will be the EC part for 3 cycles which I'm extremely anxious about wondering whether it will be worse 🙄 any advice much appreciated!! My children came home from school with their flu spray forms the other day and I declined due to it being a live virus. The advice in the leaflet was that children living with those immunosurpressed are advised not to have the spray or to keep away from them for 2 weeks, which of course is a definite no. Which triggered the question in me, do I keep the children off school for the 2 week period the rest of the school will be having it as a precaution 🙄🤷♀️. Has anyone had any experience with this?
Wishing you all well ❤
@Impatience That's really interesting re the ice pops. I have really disliked the taste which remains in my mouth for a week or so after chemo. I'll have to try them! xxx
@Mum2boys I went to A&E when I was on EC due to temperature but my oncologist told me to only go in if it was above 38 degrees (mine was 37.6). I've had a raised temperature with every chemo since then but never above 37.5 and it always resolves itself. A&E was not the most calming of environments so I've been pleased I haven't had to go this time round.
I too found the Sarah Harding news triggering and felt low for a few days but that has passed now, thankfully. My clinical nurse specialist said that I should remember that my treatment is curative whereas Sarah's was palliative as it was caught later on.
Re the running, I did day 1 of week 3 of the Couch to 5K today. I am taking it at my own pace and not pushing beyond what I can do. I see it as a longer term thing to aim for. I don't generally try to run in the first 10 days after chemo as my body just doesn't feel right. It's taken some getting used to, this listening to your body thing! I always used to be able to do whatever I wanted and energy generally wasn't a problem! I have put on about 1kg with each chemo cycle and my muscle tone has deteriorated, but keep telling myself that that is all to be expected and I can sort it once I am stronger again. When I did EC back in Feb-March, I lost around 1.5kg each cycle and ended up so weak that I had to stop it, so I would rather have it this way round - a few extra kgs as a reserve! For those of you having surgery, it is also important to be well nourished and strong for it, so better to have put on a few kgs than lost them, I say! It is hard, though, when my clothes are tight and my face looks puffy. I also have these horrible white spots on my eyelids and face and I think I look a lot older than I did! I really can't wait for this all to be over and to start regaining my previous body. My hair has continued growing during Docetaxel - it is much whiter than it used to be and I'm not sure whether it will be curly or not. Will be interesting to see. My parting is definitely in a different place. I will have to be patient while it grows - I think it's going to be quite some time before I can do much with it!
@Flower123 I have not been offered my flu jab yet - it will be the first one I have ever had, as not been eligible before. I do have my Covid booster jab on Wednesday, which I am pleased about as there are a couple of cases of Covid in my daughter's class at school and I know so many people in general who have or have had it recently. Is anyone else getting the booster too?
I hope you all have a lovely day. xxx
@hopeful1974 glad to hear your doing ok and the side effects arent too bad. the walk and lunch sounds lovely and i can imagine it was a great boost, just simple things mean so much.
@simplyeve Sorry to hear your having rough time with the treatment and also the issue you've had with house. Wonderful about your daughter and her family on their way to you that will be so good for you, wishing you a wonderful time.
@Flower123 I feel your pain re the piles i have suffered from them and know how painful they are. I cant use my bath so have to just use cream to help. My nurse asked me about having my flu vacc and oncology said i can have it 3 days before chemo so i have to book in.
@Mum2boys Your trip to Derbyshire sounds like it was fantastic and it was obviously what you and your family needed. Hope everything goes well on Wednesday for you xx
My worst side effect since my treatment was the lower back and leg pain definalty getting worse as this journey goes on. I can actually feel my lower back pulsate with pain. I also have 2 numb toes and brittle nails.
I went into work last week and now waiting to hear back from HR as i only get 3 months full pay then 3 months half pay. Told him i will have to start working again then if my pay is about to drop as cannot afford it. He is looking to see what he can do to help but if need be i can work from home. As you can imagine feeling stressed now although i had hoped to be back at work November.
I also called the breast nurses this morning as my operated breast has felt uncomfortable past 2 weeks. No lumps etc as had good feel/look but its not comfortable, i'm trying not to overthink but its not easy. They have booked me in to see consultant Oct 1st as they so busy. Called oncology to check i can get treatment finished in time so can get to appointment only to be told i should actually be seen before session. So she is now emailing my oncology consultant to see what he says, and i'm to tell them when i go Friday. So now im feeling anxious that my treatment may get postponed. Just feel i go one step forward and 5 back.
Sending love to everyone.
Hi @Mum2boys and everyone else.
Like you the Docetaxel raises my temperature. I too have been admitted only to be sent home with no evidence of infection. I have my 3rd D and final chemo this Wednesday. To try and control my temp the oncologist has prescribed me antibiotics to take on day three. Fingers crossed it works.
Ive had my nails painted 50 shades of grey 😂 for the full 5 sessions and I think it has helped as to date my nails look and feel okay.
I have also sucked on ice pops whilst the chemo has been going in and I’ve not had any nasty tastes (a reduced taste but nothing more).
I’m so pleased we are all so close to the finishing line. I start my 15 sessions of radiotherapy on 28/10 which means 17/11 will be my final treatment other than ongoing medication.
Last chemo bloods tomorrow, last steroids on Thursday, last injection Thursday. I just love the word ‘last’! 😂
Wishing everyone a positive week.
@Mum2boys lovely full reply to all. Thank you. I’m glad the dexemethesone is out of my system today for this round. I’ve had days of being arsey, miserable and tearful. Equilibrium restored! Thinking of you all xx
Good morning everyone!
The Docetaxel was a bit tough! I got a temperature and had to go to A&E but fortunately my bloods were okay this time and not even an infection that warranted antibiotics, so I was so relieved! I've been to A&E 3 out of 4 chemo rounds! I feel like such a nuisance! But we went away for 6 days to Derbyshire and had such a great time. We rode bikes along the Monsal Trail and I felt so proud of myself! The kids loved it too and it felt so nice to be able to do fun things with them. I've had so much mum guilt over past few months being on chemo, but they've been amazing and haven't complained at all. I have 5th round of chemo/2nd Docetaxel on Weds. My BCN said about possibly reducing the dose or changing my GSF injections as she thinks it might be those that are causing the digestive problems. So I'll see what they say tomorrow. The news about Sarah Harding was a bit triggering to be honest. But I managed to pick myself up pretty quickly, so I'm pleased about that.
@Flower123 I hear you re the piles. This is first time in my life I've had them and it's horrid. I hope they get better for you. So lovely to hear you have supportive family that are taking you for car rides and distracting you. I hope your blood tests go well today and best wishes for your 5th round on Friday.
@simplyeve I'm sorry about your magnesium again. But yes, only one more round to go - you can so do this! I'm sorry too about the emotional stress you had to go through with the house in Spain when you were at such a low point already. It sounds like it worked out for the best though. I'm so excited for you that you can see your daughter, her hubby and grandson - I bet it was very emotional!
@hopeful1974 hope your side effects are still manageable. It's lovely to get out with friends especially while the weather is still nice. Five Guys burgers are the best aren't they?! How are you getting on with running? I tried the C25K recently but didn't get very far! I really want to start it again though.
@GonnaGetThruThis I'm so pleased the side effects are manageable too for you. It sounds like you're keeping yourself busy too which is good. I've found that keeping busy has helped me stay positive. I hope you enjoyed the LGFB session. I might start painting my nails too - they have dark moons on them and I'm not quite sure what this means! But I haven't been able to do certain things with my hands that I could do before - even popping pills is tough now. Maybe that's neuropathy. Have you found painting yours has helped? I'm so pleased too about your mum! That is such good news and will be something you can really look forward to. My family live in Australia too and they feel so helpless over there. But my mum lives nearby and looks after me. My D sessions are every 3 weeks so next one is due this week.
@BabyBunting I hope you're still doing okay. Yes, it feels so good to be nearing the end of chemo and we can help others with our experience.
@Louise65 I hope you're doing okay. Mouth thrush sounds nasty. The weight gain is horrible isn't it? A wedding is nice to look forward to though. Hope you enjoy practising with your new beauty items - I'm sure you'll look great! I bought some false eyelashes this week and have been practising as mine are nearly all gone now sadly.
@Impatience I loved your poem! It summed up exactly how I feel - like an alien! I've never felt so unattractive in all my life. I don't recognise myself either. My mum keeps assuring me that everything will grow back/I'll lose the weight and I'll be back to my 'normal' self soon. I can't wait tbh. Well done for getting through this round. Just one more to go!
@Fairie I'm so, so sorry to hear about your mum. It must be such an emotional time for you. I hope you are okay and that today is a good day for you.
@Flower123 how are you now after your chemo? I'm sorry it hit you hard. I'm sorry too about your daughter's boyfriend. As others have said, it's definitely not your fault. I hope you and your daughter are okay - it must be a difficult time for you both especially as he lived with you.
I hope you all have a great week. Thinking of you all.
@simplyeve @So Lovely to hear your daughter and family coming such a great boost.
I have had quite a good week with manageable side effects. Worse is bottom such painful piles having Epsom salt bath and cream outside . But it is going for walks so painful. Have had few feet pains/ tingles . On this new chemo I have found I’m very much more emotional and not in a good place sometimes. Hard to shake of the bad thoughts my family have been brilliant trying to keep my mine on other stuff and getting me out for rides in the car .
Well today I have bloods in afternoon, oncology tomorrow I’m not sure if they will keep me at 80% or up it ? Then 5th Chemo Friday!!!!!! Ohh also booked on nail course on wed I am looking forward to that .
Has anyone had or booked in for their flu injection. I have got my for 7th Oct which will be 8 days before my last chemo ?
Well the sun is coming out and looks like it is going to be a beautiful day . Nice 30 min ride to Cheltenham later to get bloods.
Hope everyone has a good day and thinking of all of you
Love Jennifer xx
I'm sorry haven't been replying to your posts, though I promise I have read each and every one of them, we are all having our ups and downs but I hope we can all see light at the end of the tunnel. I had my 5th treatment on the 9th, unfortunately, they didn't reduce my dosage as my Blood Test results weren't back, before I saw the oncologist so I am having the same problems with my magnesium, and having to have blood tests weekly in case I need a drip, but I only have one chemo left to do so I can get through this.
To be honest I've been on an emotional rollercoaster for the past month, after finding out my daughter was pregnant again I was having a real high, the following week we were supposed to finalise the sale of our holiday home in Spain, which we had bought with my inheritance when my father passed away in 2003, it had been on the market a couple of years and we got a buyer 2 days after my first surgery so it was bitter sweet that we couldn't go out to say goodbye to neighbours, we have had it for nearly 20 years and have had wonderful holidays there with family and friends, anyway to cut a long story short after getting everything arranged the day before it was due to be signed off the buyer pulled out, as it was when I was at my lowest ebb with the Chemo I took it very badly. Suffice to say I am over it now and we have decided we will keep the house and use it for family holidays again as a way we can all be together, but at the time I really was at my lowest ebb.
As I type now, my daughter, her husband and grandson are driving up from the Channel tunnel and will hopefully be with us around 5pm, tears are already flowing but they are happy tears! I can't tell you ladies how much this means to me, but I think you can all understand.
I hope each and every one of you has something to look forward to the way I have.
Chemo is hard to take between the nausea, the tasteless food, the aches and pains, the numb fingers and peeling skin on my feet, the diarrhoea and the constant exhaustion which means I have to sit down and rest all the time, there have been times when I've wondered can I get through it, but here I am with one more treatment to go and my lovely family due to arrive. So has it been difficult yes, but more importantly has it been worth it and would I do it again yes! It's that simple I want to see my grandchildren grow up I want to know them and them to know me.
I will post again once I know what is coming next in terms of treatment planned, am thinking it will be radiotherapy in November, but have an appointment with Oncologist on the 29th. In the meantime Ladies remember whenever you are at your lowest, the only way you can go is up. It's taken me a while to accept this but I think I am finally in a place of acceptance.
I wish you all a peaceful weekend and those going through treatment currently good luck, for those of you who are due to have surgery, I assure you it's far easier than the chemo! Let's congratulate ourselves on getting through this as well as we have and thank you each and every one of you for your support and encouragement.
Much love to you all Yvonne. xxx
Thank you for your kind thoughts.
glad you’re almost at the end of chemo! And glad you are getting out and about doing lovely things.
I am continuing in three weekly P and T ( Herceptin) treatment and have a MRI this week ahead of surgery on 27th Oct.
Wishing you and everyone a gentle lovely Sunday xxxx Fairie xxx
Morning everyone, just wondering how everyone is getting on. I have been ok in my first week post chemo with varying side effets such as nausea, acid reflux, fatigue, anxiety, headaches, sore fingers and toes - sound a lot when I write it down, but honestly, it has been manageable. I went out with a couple of friends yesterday for walk around some lovely gardens followed by lunch and it was such a boost. I keep thinking that it is only 5 weeks until my last chemo, and that is pretty motivating. I am being pretty careful because of Covid, but trying to do nice outdoor things when the weather permits.
Do let us know how it is going for you, @Impatience @simplyeve @Louise65 @JessicaB @GonnaGetThruThis @Trowster @BabyBunting @Fairie and everyone else. Sending big hugs today. xxx
Wow @GonnaGetThruThis @how t on earth so you manage all that. Maybe nexuses it’s coz I’m 59, but there’s no way I could do that!
@GonnaGetThruThis So good to get your update and it sounds like you are doing really well. I hope you enjoy the LGFB nail workshop tomorrow. I loved it and it felt so good to give myself some self-care.
I have 2 more chemos to go so the end is in sight! I had my last on on Friday and apart from one really grotty day on Monday (nausea, fatigue and headache all at once), I have been more or less ok. I enjoyed a lovely walk today in the sunshine and took my children for a Five Guys burger as I was craving that! I’m trying to eat more healthily in general but the craving was strong! I had a couple of days where I was hit by anxiety out of nowhere but I think that is a side effect of some of the drugs I am on. I usually feel much better once I am strong enough to get out for a walk / run again. I’d say I am pretty wiped out for four days and then start to pick up.
We are all getting through this. It is a complete rollercoaster but it is so good that we are getting all the treatment.
Love to you all. 😘
Positive / Negative / Good News / Bad News whatever it is you need to share, this is the place.
No-one else can really know what we are truly going through at this moment in time and so it really helps so much to have this group.
I often look at the groups who are ahead of us to see how they're doing and at what stage they are. I actually think ours is one of the most active but there are a few monthly groups with lots of people who have shared their stories and they are all similar to ours. I absoluley want to be able to get to a point soon where i can look at the ones following us and offer advise to those who are about to go through what we have been.
Anyway, I am on Week 4 of 12 of 'P' and apart from a blooy/snotty nose and shitty sleep I dont seem to have anything else really bothering me at the moment. I am sure that at some point it will all start to get a little harder but for now im doing my best to keep to a normal routine. Now that school has started, my day starts with us leaving at 7:30, it is about an hour round trip for me, then im home for food and then sit at my desk and do some work/admin/emails/internet surfing etc, then i try to do some kind of workout/activity (to be honest i have been very lazy where this is concerned until this week), then i am also trying to be more organised regarding dinner as we have been having way too many takeaways. About 3.30pm i head off for the afternoon school run and when we get home it is a whirlwind of after school activites, homework, dinner and then at some point sitting down for a bit of a rest. Sounds busy but i do manage to have alot of rest/sitting time so for the moment i am coping ok.
I have the LGFB Nail session tomorrow afternoon whic should be good. I went for a mani/pedi a few weeks ago so they are in ok condition. I have been applying my polish to the fingers and toes weekly and also a friend gave me a whole nail care kit for my birthday the other week so ive been making an effort to use the oil etc.
Hope everyone else is coping ok. Please do keep in touch.
@GonnaGetThruThis @Thank you so much for asking. The second 10 days of Dox were fine and I had dose 2 yesterday. So far so good. We’re all nearly there now on the chemo part of out chemo phase. Fantastic. What a bunch of sheroes we are, and think how much we’ll be able to support others in the future. As a number of people have said to me, chemo is horrible, but you can do it. Xxxx
Good to hear you are feeling a little better. Not long to go now. The goodie bag hopefully will have given you a boost. I have a very generous friend who sends me parcels every cycle and they always give me a lift.
@Fairie I am so sorry to hear about your Mum. It’s a time when you need her most and yet she needs you too. I lost my Mum four years ago and there hasn’t been a day during this journey I haven’t wanted her. Young or old Mum is always Mum.
I am also pleased to hear your chemo is finished and you can begin to think about surgery. Having had my surgery first I can tell you it was nowhere as bad as chemo. Whereas chemo is one day forward and then two days back surgery is all about recovery and each day it gets better and you get stronger. A little tip is when your dressings come off you will be swollen/bruised and it’s a shock however after 7 days the difference is amazing so hang in there.
@Flower123 please don’t apologise about negativity. I’m obsessed with negative thoughts etc but I honestly believe that getting those thoughts on to paper releases them from your head. I think we need to say how bad it is to make us feel better and given we all do it then that’s what makes this forum a great supportive group. Wishing you well for your continued treatment. I notice you are on Docetaxel for your final 3. I call it Demon D! I’ve found it tougher than EC but hey we are nearing the end.
@hopeful1974 I hope you don’t have any more delays and you can crack on with your treatment I’ll be keeping everything crossed for you
Wishing everyone else lots of good luck with treatment and looking forward to when we all have reached the finishing line.
Love Imp xx