@Sammy73 Thank you for kind word😘
I totally understand how upsetting it might have been to have your mum taking over your story. It would be the same with my mum and she would make it about her, and her sadness. It happens to me and I wanted to keep the little control I have on the diagnose and the disease.
@Bex27 no but I've had my half way through chemo scan of 'lump...and it's got smaller and fragmented which is what they wanted to see so got to see that as a positive.
3 more chemos to go so hopefully even smaller after that ...God willing!
I hope you are all doing OK...the heat is a challenge for me can't be outside for long which is frustrating when it's so beautiful but never mind.
Take care all....having my rough week post chemo but will feel better soon so keeping positive.
Love to all xx
@Love running its really tricky with telling people, my mum!!!! She lost my step dad last year after suffering from parkinsonism and has been on a roller coaster ever since, weird I had to go through my sister to tell her about my diagnosis!! Filtered and easier for me and my partner to deal with!! She was a mess but felt like it was her news to inform everyone and their wife!!! Honestly it was really quite upsetting but now I have my strong, I can talk or see mum days but it's taken a while, my sister has become a very good buffer.
Enjoy your trip up to the North.
Love that you wanted to be on this 'more open group'
The world is a funny place but we are all in it. X
Thanks for sharing your dramatic adventure with the 2nd dose of Pfizer. It is so good to know. I am so sorry that you ended up in the AE. But glad you are better now. and that you managed to spend your weekend off with your friend in Devon. These moments of normality boost you so much. I am craving them and have been feeding these cravings for a week now. Meeting friends and colleagues outdoors, planning holidays, …
I love Devon, I studied a semester in Bristol and at week-end we used to drive down to Devon and surf. Fond memories of my time as a careless exchange student (almost 30 years ago -😱)
I am hoping to get mine in 3 weeks. I try to time it after my three weeks break when I am supposed to back up on blood level and before I start paclitaxel. It is a bit difficult before you are supposed to wait for the text message you get from the authorities. But I will to call t I plead my case that it needs to be at the tight time.
I cross my fingers that you can have your 5 days holidays. It is such a boost to your mood. The past weekend helped to feel normal and also to go through my 4th and last EC.
Feeling normal, having plans and being able to enjoy the family freely was an amazing feeling. So I am really looking forward to next week and my trip to the north. All logistic have been sorted. Just hoping my body does not fail me this week.
@all: if possible, don’t let your fears get away of planning good things for yourself. May be it has to be cancel at the last minute but if not, it will give a lift in your mood.
I am so sorry to hear about your mum. I can’t imagine how it is possible to deal with both yours and her diagnosis. I hope you get all the help you deserve. If any, we here in the forum will help some.
Since you ask, I am actually French married to a Swede and having kids going to an international school (trilingual by now with English being their first language, then Swedish and then French). Although I speak Swedish, it is my third language and I can’t express myself as well as in it as I do in English. Why not joining a French forum, you might ask. Well I did not find any that was so open and welcoming and where I felt comfortable. Also in general, the website around patient care are better in the UK. The UK has a long tradition of having good patient support network (I work in public health and collaborated a lot with public health England before Brexit). When searching I stumbled on breast cancer now and found the website useful and user friendly. So this is me, a slight imposter😬.
@ all: I hope you ladies are ok with that.
Another confession is that I have not told my mum about me going through breast cancer and chemo. She is manic depressive and getting close to 80. It would have been too hard for her, knowing that she can’t travel here and help me. So I decided to not tell her and use the COVID situation to justify that I can’t travel to France this summer. Also I needed to protect myself, because she would have cried every time on the phone (we speak every day or every second day, especially since COVID) and her depression would be aggravated. The 2 lockdowns have hard on her since she lives alone. Her generation also associate cancer with a death sentence and I could not cope with it.
So I made the conscious choice not to tell until September when my chemo is over, I am fully vaccinated (hopefully in 3 weeks) and I can travel to France to give her more good news than bad news.
I have been fortunate because I managed to speak to her as normal although going through treatment.
On more joyful topic, the 21 st of June, we celebrate midsummer- the longest day of the year. Here it is bigger than Christmas. All Swedes leave to their or their relatives summer house to party (way too much alcohol for my taste but still super fun to watch). I am going to celebrate it in the north where the sun barely goes down. It is unbelievable to sit outside by midnight and it is still daylight then it gets slightly dark (dusk) and by 2 an it is daylight again. I love this time of the year. If you come through Stockholm one day, let me know I could guide through the city.
Take care and lots of hugs
you are more than welcome in this wonderful forum. You can also double dip😜🤫 and join the June one too😀. Get the best of both. It is just there to enjoy.
you are more than welcome in this wonderful forum. You can also double dip😜🤫 and join the June one😀. Get the best of both. It is just there to enjoy.
I'm back! Had a bit of an adventure since my last message. I was doing really well after my first dose, Friday, with just some fatigue and sore mouth, then I had my 2nd Pfizer jab, Tuesday, and ran a temperature on Wednesday. I called the acute oncology, figuring it was just the covid jab side effects, but was told to go to A&E to check it out. They ran my bloods and discovered I was neutropenic so I ended up in hospital for three days. They still figured it was the covid SEs but they couldn't run the risk while I was so vulnerable. I definitely should have taken the advice I had read about taking an overnight bag with me! Luckily my partner was able to bring over some stuff to keep me entertained.
The silver lining is that my neutrophils had recovered completely by the Friday and I was released and told I didn't need to be overly cautious anymore. Which meant I could go down to Devon with a few friends who had planned a trip to a family beach house! We just got back yesterday and I feel better than ever.
It also seems a bit crazy that I was neutropenic and then completely recovered within the first week of the dose! I thought the 2nd week was the danger week. At any rate, whilst I'm a bit annoyed that they didn't consider the timing of the jab to be an issue (I spoke to my oncologist about this) I'm glad that I now know my body's response and I expect the next rounds to go much more smoothly. 2nd one is this Friday!
I did the cold cap as well but my hair started falling out pretty dramatically yesterday so I'm feeling a bit stressed about it. I've got a wig though, so if needed I'll cut it off and see what happens. I think that's been my motto through this whole thing tbh - "I'll just see what happens!". It has been tough to mentally prepare for so many different unknowns along the way but I hope I'm a bit stronger for it.
@Michelle21 and @Baroness welcome! I'm not as active as some of the other women here but everyone is amazing. Michelle, I'm so sorry to hear about everything you're going through. That's too much! I hope the psychologist is helpful and you're able to book in some more sessions.
@Love running That's great you're getting away! My Devon trip was incredibly rejuvenating, even more than I was expecting, so I hope it's the same for you.
@Poacher65 Did you end up speaking with your breast care team about the pain in your breast? Is everything okay? I have had my mastectomy already but I would definitely feel stressed about that too. I hope you were able to get some peace of mind. Also, great analogy for how you feel - I definitely felt hungover too for the first few days!
So sorry to hear about your mum. What a lot to cope with! Whatever happens you will be okay and come out the other side.
Glad to hear your SE aren’t as bad, that’s encouraging. I have one more cycle of EC to do next week and then a couple of week until I start weekly Paclitaxel and Carboplatin
I am also getting genetic testing as my BC is triple negative. Apparently the rules have just changed here and if you are under 60 and triple negative, your oncologist can do a blood test for genetic testing and just refer you to a geneticist if positive. Although not everybody would want it
I should finish my Chemo beginning September, the onto radiotherapy
take care xx
@Baroness @welcome to the group, I’ve only recently joined too and have to say there are a great group of ladies here.
@Love running well done for running through, I know exactly what you mean about your brain being at peace when running. Nothing beats running and listening to your body and just going with it. There isn’t a great deal of encouragement for exercising through chemo here, not that I have found anyway but I have also read articles about it boosting your immune system and reducing risk of infection, even post op. Although I havent continued to run I go for a walk every morning of between 3-6 miles and I live in Wales so there are lots of hills around to get the heart pumping. I go with friends and I find the chatter lifts me up most days and some days we are out all morning. Are you Swedish or living in Sweden? It is a country that is on my list to visit, my birthday is 21st June and I know you celebrate the longest day there so maybe I will go next year.
@noodledoodle my first carboplatin seems to have gone ok, less SE’s than FEC. Although I think going in every week for 12 weeks is going to get draining, especially as it is bloods Wednesday, chemo Thursday. I think you said you are having 9 paclitaxel and I am a cycle ahead so we will probably finish about the same time. I will then have surgery which at this point in time looks like a double mastectomy because of having BC 3 years ago.
I have an appointment with the psychologist at my cancer centre today. The appointment was made a little while ago as I have a lot going on. I was diagnosed in March and around that time my mum became ill. She has been diagnosed with terminal cancer, bowel and ovarian and has been given weeks to live. I am finding it so hard dealing with what I am going through and trying to do what I can for her. Unfortunately she lives 3hours drive away so that adds complications. The psychologist isn’t going to know what’s hit them when I open the floodgates later.
How's everyone else doing? Anyone finding nice things to do in this lovely weather? I hope everyone is coping ok mentally and physically, big hugs to everyone here xx
It sounds like we're at very similar points in our cycles then. My final FEC is on the 24th June, then I move onto Docetaxel with herceptin and Perjeta.
Hi @Baroness not too late at all! I had my second EC on 1st June and am due the third on 22nd June. Can’t believe that will be the last of the first phase, the on to Paclitaxel and Carboplatin!
I've only just discovered this, I hope I'm not too late to join.
I had my first cycle of FEC on 13th May and second on June 3rd.
You sound good and strong, the break sounds great, think thats a great tonic!!
Hope you get your 2 weeks with your man too.
We are hoping for 5 days away in august up to Norfolk, beaches boating. I cant wait, nice to have something to look forward too.
Have a good week x
This time, I managed better the low from the steroids, but as you say, the emotions are all over the place.
Yes, I am hoping to run all the way through chemo. It is hard but when running, my brain is off and not on overdrive😅. I listen to my body and stop when it says enough.
Sometimes I run long stretch (10-12 km) and sometime barely can make 5 km. All at a very low pace. I have lost in speed and distance but it doesn't matter. I enjoy every drop of sweat. Since the surgeries I also run with two bras (feels sometimes running in a corset).
I read a lot about exercising through chemo and after chemo. There are a lot of studies that show positive effects. I am located in Sweden and here it is pretty much encouraged to keep training or to move as much as possible with a minimum of 30 min per day with a higher pulse. With the exception of training indoors and swimming (because of the risk of infections at the PICC line), the oncologist encouraged me to continue all forms of training.
In Sweden, there has not been any curfew or lockdown and I live next to the woods, so I have been able to run/train/walk anytime I wanted to. It is also very popular here, to have outdoor gym (made out of wood to blend in the landscape). There is a good one by where I live. I am going there to do leg press, arm press, back training and sit-ups.
Overall, I believe it helps me stay active and clear my head. But not every day is easy to get the motivation.
I hope you manage your injection. The first time can be a bit stressful. My first time was after my surgery, I had to take blood thinner, and I had an audience. My eldest daughter and my husband, both wanted to look. In a way it helped, as I had to play cool. Apparently, I looked professional.
I also had a bit more fat around my belly by then, and the needle went smoothly in without hurting. I have to day that you should not hesitate too much otherwise it bounces back.
Now I don't think about it anymore and just do.
After my week-end camping, I am back on Movicol looking forward to the serenade.
I am glad it worked for you and that you and your daughter enjoyed the sound effects. I have no shame anymore 😂, it totally disinhibited me.
I have so much salads that we will turn into rabbits😂
The strawberries are turning pink... so I hope that we can taste the first ones this week. My basil is catching up and I am planning to make my own pesto. Never done it before.
My cherry tomatoes are blooming.
Virgin mojito stay on my summer drink list (mainly because my mint is taking over the window seal - it is unbelievable how it grows). I will make an exception in my dry chemo (no a drop of alcohol since I went to surgery) for a small glass of champagne when I am done my 4th and last EC. A small celebration for going through the first bloc of treatment.
Good evening everyone,
I hope you are all doing well.
I have been off line the last couple of days. The weather has been really good over here and since I was feeling well, I took the chance to be 'superactive'. I even organised a short camping week-end with the family for the end of school. The kids are on holidays. It was almost like the life before. My eldest said it was the best week-end ever and my youngest was over the moon. I am so happy I could do it for them, as my disease affects them too, although they don't say anything.
To my fellow runner in this forum, I do manage to run (I thought if I can walk, I should be able to run. Right 🤔). It is hard and sometimes feels like mission impossible. I listen to my body and some days I can do long run and some days there are very short. Today I did a 10 km long run very very slowly (1h10min) but Sunday a week ago, I barely could run 3.5 km. I stop when my body says enough. I have lost in speed, and distance. It doesn't matter as long as I can put my trainers on and get out in the woods. I hope I can keep running all through chemo, as this is the only time when my brain is off and in peace. Training has been keeping me sane so far. It also helped with sleeping at night and the nausea.
Tomorrow I will have my fourth and last EC, after which I have a three weeks break before 12 weeks of paclitaxel. I cross my fingers that my body takes it as well as my third one. If so, I got the green light from my oncologist to go on a 2 week holidays to the North of Sweden to my husband's parents cottage. I am really excited about it. I have managed to book a time at the local medical centre to get my PICC line spa. We will leave the kids for few weeks with my in laws, which we have not seen for one year. They are now fully vaccinated. So it feels safer.
I hope you all also got some sunny and peaceful days. I send you lots of positive vibes and hugs.
Poacher65 … morning I hope your pain and swelling has subsided I am sure all will be fine , please just ring and talk to someone to put your mind at rest , they will get you sorted …. Stay positive and sending you lots of love xxx
@Poacher65 I am sure it’s all perfectly normal. Things seem so much worse when we are anxious. The amount of times I have worried about things which seem huge at the time and then after speaking to the breast care nurses, all anxiety goes out of the window!
Speak to your breast care nurse first thing tomorrow and I am sure they will put your mind at ease.
take care xx
I have definitely felt things going on in my affected breast since treatment. My brain swings from it’s the treatment shrinking it to its growing again! Depending on how irrational I’m feeling.
I guess there is a lot going on inside our bodies at the moment and it is difficult to tell if it is a ‘good pain’ or not. If you are worried I would mention it at your next meeting with your oncologist I’m sure they will be able to put your mind at ease.
Quick question....has any of you had pain in your affected breast post chemo?
The pain I was having pre diagnosis in my affected breast stopped once I started treatment along with the swelling and heat...the main reasons I went to see Consultant....but this time its painful and slightly swollen.
Thanks all....and take care xxx
Hi ladies, im not good at catching up on here, your all so good at replying to each journey, im just saying hi to all and i love that we are all doing this our own ways. On wednesday i had my 2nd EC through my (deaded) picc line, it was great, quick and no fuzzy head like the 1st time, i seem to have more energy and injections started last night with a painkiller (as adviced) no issues!
Is it because i wasnt as anxious this time? Is it cause its topping things up rather then full blown in? God only knows but im hoping for a good calm healthy weekend.
I wish you all the same. Its gonna be hot so hats on ladies ⛱
I too had my 3rd EC yesterday and unlike my first 2 rounds felt the effects during and immediately after my infusions unlike first 2 where I usually felt ok ish until day 3...... so admitted defeat and went to bed early and slept.
Up this morning early and feel a little less overwhelmed but still a bit 'hungover....my only way of describing how the EC has made me feel.
Start my injections...which I hate because of the lightheaded feeling they give me....Sunday so like all of you I count the days down until I finish them.
Start Docetaxel on 2nd July for 3 rounds so anticipate there will be a different set of side effects to deal with.....BUT......im 50% through my treatment plan for chemo and 1 step closer to my surgery so I must moan about the SE's......
Going to have a quiet day today and rest these feelings away hopefully
Take care all you lovely, string, inspirational ladies and talk soon.
'We can do this....in our own way....but we can do this'
Hi all you ladies
coastal ...yes had a good week thanks , ready to start it all again 👍let’s do it .
Karden ....I thought the same with the injections , I think my husband quite enjoyed stabbing me 🤣 but I hardly felt a thing ... did nearly loose one has he took the wrong end off and went down my leg 🙄
Michelle 21 ...so glad to here you are feeling ok , heck of a long day for you though .
I hope all you ladies have a good weekend and take care xx
Hello Lovely Ladies,
A warm welcome to the new joiners - this is such a lovely, supportive group. Even thought I don't write often, it's a comfort knowing this group is here, and there are always lots of good tips and encouragement.
I had my 3rd EC this week - every time seems a bit different: this time it hit me hard on the day - felt absolutely bushwhacked. Then day 2 felt surprisingly ok, but the fatigue is back with a bite today. Oh well, all the more reason to take each day as it comes 🌷
Lovely to hear about people's plans for getting a break / holiday. Whitby is on my list! I've decided to take some days off work end of this month before my 4th chemo. Not got any major plans, but hoping to get in a special dog walk and maybe a day by seaside. 🤞 Also looking forward to seeing some friends who will visit on the "good" weekends.
I have to do the injections over 5 days as well. They don't hurt, and are really easy to do. I was also told to take injection out of fridge 30 mins before using it (not so cold, hurts less). I just don't like self-injecting very much so I think I get wound up more than is strictly necessary 😂 - counting down the 5 days is my mantra and a deep breath at the point of injection - then watching something mindless on Netflix etc - LOL
@Love running I've still got lots of lettuce (surprise!), but the radishes I planted are teeny-tiny - taste good, though! Have you had any of your strawberries yet or still on the virgin mojitos?
Hope everyone has a the best weekend possible x
I have a husband like that, I think he is secretly pleased he isn’t able to come into chemo because of COVID, he can’t stand needles of any kind, I’m surprised he didn’t faint when he had his vaccinations! 😂
@Michelle21 It sounds like you have major decisions to make but you have time to think about it and you will make the right one for you.
I'm pleased your treatment is going well and you're not having any sickness. I'm feeling really tired and mildly nauseous but not too bad overall and it's all manageable.
Keep that October break in your mind and it will be here before you know it.
I start the injections on Monday and will see how I get on as my husband is more nervous than me!!
Take care. xx
Hello all, hope everyone is having a good day.
I’m pleased to report I have had my first of the new regime, so one down 11 to go! More good news despite my oncologist saying it can cause bad sickness I don’t seem to have any sickness. I have taken the same anti sickness meds that I took on FEC but still felt nauseous on FEC but, touch wood, sickness fine. However it didn’t exactly run smoothly yesterday I arrived at 9:15, by 10 still no treatment, but did have reflexology which was lovely. At 10:30 they explained that my bloods had gone to another hospital by mistake and they were waiting for the results. Thankfully they received them at 12 and I left at 3:15, it was a long day especially as I’ll be back again on Thursday, but in the big scheme of things there are worse things that can happen!
@noodledoodle I hope you have similar results with your SE’s from this treatment. Did your oncologist mention the high risk of anaemia and blood transfusion? My oncologist likes to give me the worst case scenario on everything! I’m not looking forward to feeling the fatigue but one day and one cycle at a time. Yes on a plus let’s hope the carboplatins kick our unwanted breast guests out!
I have surgery next and spoke to my oncologist yesterday about a double mastectomy and she said that is definitely an option that needs to be discussed with the surgeons. I want to have it because I just dread the thought of going through this for a third time, but also a double mastectomy is a big decision . I have a few weeks to think about it. They don’t do recon straight away here I think it is at least 18months but I think I might wait even longer.
@TicTok I hope your white blood cells come back thick and fast for you ready for your next cycle.
@Karden How nice to get away for a break. When I had BC in 2018 my OH and I went to San Sebastián after my chemo and surgery. We had an unexpected warm day so had the afternoon on the beach. I remember going for a swim in the sea, it was freezing cold but I just felt so alive after an awful 6months. Also the swimming felt great on my arm after having my nodes removed, I highly recommend if our pools ever open or if it is warm enough for the sea! I am focused on a break in October but will like be closer to home than in 2018! I hope your chemo ran smoothly for you yesterday and that your are not suffering with too many SE’s. Hopefully your trip will have helped boost your white blood cells and although I am a wimp when it comes to the injection and get my daughter to do it for me it actually doesn’t hurt at all.
Take care all
@noodledoodle I'm pleased to hear that the injections have been straightforward, I only need them for 5 days too so they shouldn't be too difficult to deal with. I have lost weight since starting treatment but the stubborn bit around my middle will come in handy now. Lol.
Hope you are doing ok. x
I hope everyone has been having a good week! ❤️😍
@Love running yes I totally did love the sound effects! what a shocker! didn't take many of the sachets either - it's been fantastic as I've gone every day. I had such a bad time first chemo with constipation, I'm so grateful it's worked! We don't have a door on the toilet this week (diy) only a sheet so my daughter thinks it's hilarious! good to have the laughs!
I've been thinking about all the training that you do - I would really like to do more. I used to go to the gym and do things like body balance, but haven't been since lockdown and now can't go due to chemo. I've been really lazy and seemed to have lost my fitness a bit, in terms of core strength. How are you finding the pilates - are you back in your normal routine for it, or just keeping it very gentle? I've been trying the yoga with Adrienne on you tube, but worry about overdoing it.
@coffeeandcake - yes it's so weird our reactions to the drugs! this 2nd chemo I feel much better than the first (although have now lost my sense of taste - argh! there's always something! I'm on the lookout for strong tasting things to make up for it). I don't think not having a strong reaction means it isn't working - having hair falling out is a definite sign. It is just we are all different - the oncologist told me that if you have any weak points it tends to effect those, I have a dodgy stomach and digestion so I guess it was always going to effect that.
@Cumbrian Lady really glad you had a mild response to your chemo! that's really good news.
@Michelle21 so glad your PIC line went smoothly! mine did too, it was a real relief. Hope the new regime goes well for you with the carboplatin x
@TicTok sounds definitely a good idea to get the white cells back up! Hope you are having a lovely last week and the sun shines! it feels so good to get the weeks ticked off. I've created (in a manic steroid fuelled moment) a daily medication/reminder chart with lots of tick boxes to tick. I did it initially as on a bad day I wasn't totally on the ball with remembering what I'd taken, but it also feels so good to tick off the boxes!
@Karden So glad your trip went well! that must have been wonderful to get away, your husband sounds a star! I have the injections to increase my white blood cells for 5 days following chemo. I was initially anxious about it but it seems really okay. The only thing I've found is remembering to take it out of the fridge 30 minutes before, and it does seem to give me bone ache (but not too bad this time round).
Lots of love to everyone 😍 xxx
@Karden @so glad you had a well deserved break. I love Whitby.
I have been having the injections to stimulate white cells and they really are simple to do once you get over the first. I think it’s just psychological, putting a needle into yourself but if you pinch the fat(and I have plenty to choose from) firm, it really doesn’t hurt. Good luck with it all. Not long before you finish your treatment which must be a good feeling!
take care XX
Hi @Michelle21 @and welcome. I too have TN BC and am on the same regimen as you I have had 2 EC and am having 3rd in a week. I will then move on to 9 weeks of paclitacel and 3 weekly Carboplatin. My oncologist did say triple negative cancers respond really well to Carboplatin, so that should give it a good old blast and get it shrinking! You are a bit ahead of me on the chemo but I have already had a WLE and will need radiotherapy too after chemotherapy. Let me know how you get on with the weekly. It will be handy to have some tips. Good luck with the Picc line, it is so much easier and well worth it
@Michelle21 Welcome to the group, we're here to support you every step of the way. It must have been such a shock to get your second diagnosis but you have got through it once and you will do so again.
Glad to hear that the PICC line has gone in ok, you will find it makes it so much easier to have the chemo infusions. I also bought a sleeve from Amazon as the ones supplied by the hospital were not a good fit.
I had my line removed after the first 4 chemos as I then had a lumpectomy and sentinel node removal but then had another put in for the current 4 chemos. Removal was a doddle and didn't hurt at all. A nurse literally pulled it out slowly straight after my 4th chemo session and that was it.
I have had no trouble with either of mine but it was lovely to have it gone and not to have the dressing permanently on. The first shower without it was blissful.
Good luck to you that all goes well this time. xx👍
I've had a wonderful few days away in North Yorkshire, not too far for me as I live in Sheffield but it has been such a joy to be somewhere new after 9 months of staying local. It was good to spend this time with my husband who has been amazing in supporting me at this time and is an absolute star.
My oncologist called me whilst I was away, which I was expecting as I have got my 3rd chemo today ( or the 7th if you also count the first block of 4).
She has prescribed a different anti nausea drug, I can't remember the name but told me not to be alarmed when I read that it's also for schizophrenia, it's a very small dose and only for a few days.
My white blood cells were still slightly low when tested on Monday and I am having another test early this morning. She has prescribed an injection to be done at home over 5 days from Monday to Friday following chemo. I have been ok since first starting Chemo in December but she says that it could be a build up effect and doesn't want me to have any delays between this Chemo and my last one on 1st July.
I've never injected myself before so hope it will not be too difficult.
I've got an early start this morning so will be back on here later with an update.
Hope you all have a good day. 😊😎🌞
Sorry tjat your back but you seem jolly nice, i have had some emotional experience with my picc line, but 2nd EC with it yesterday was a dream in and out of the chemo suite in an hour. So easy.
We are all on different paths but we all know we are on them together xx
Hi all you ladies and welcome michelle 21 so sorry you have to go through this again , I guess we will all have that on our minds at some point the dreaded c word coming back 😒 , but embrace life we will 👍 you sound a very strong lady .
coastal I don’t have my next chemo till the 17th next week every 21 days Think I need the extra week to get my white cells back up glad you are feeling better .
love to you all nearly another week ticked off 👍xxx
Hi @Love running thank you for the welcome. I am so impressed that you are still training! I am also a runner but stopped when I was diagnosed. I am walking a lot and as I live in Wales there are lots of hills to climb! How far are you running? Keep it up I’m sure fitness helps you through.
The low that follows steroids is awful isn’t it? Even once you have identified that’s what is causing the downer your emotions still go all over the place. At least you know it will only last a short while.
Glad to hear that Movicol is working😉
Did you experience some of the LOL moment I had?
Welcome to this group. Sorry you are back. We certainly can help each other and learn from each other. I would not be able to do it on my own and this group has given me a lot of comfort. All the women here are so strong and wise, loving and caring.
I do worry about the future, but as you said, I am also trying to embrace life to the fullest since I have received the diagnose. At the moment, my body tolerates the chemo rather well (lost my hair, some emotional downs when I am getting off the steroids). I spend so much more quality time with my family, after years of working too much. I meet friends more lately (after the past year and half) and I am able to to train quite a bit. So I feel that I am one of the lucky one.
I don't have the same treatment as you. I have grade 2 ER/PR+ HER-, micrometastisis in my first SLN. I have done 3 of my 4 EC cycles and I will follow with 12 paclitaxel and radiation. I have got my surgeries already (2 of them for unclear margins).
But I have a PICC line and it is great actually. It has not bothered me at all, even when I run. It makes the infusion so much easier. The only thing against is my skin does not like the plaster. I get a bit irritated but nothing major. So I get my PICC line cleaned and flushed through, I joke with the nurse telling her it is the equivalent of being at the spa and having a facial. I enjoy the cold disinfectant on my arm and my nurse is cool, she takes really her time so I can be as long as possible without the plaster.
Lots of hugs for now and talk soon
Thanks for such a warm welcome, it’s very much appreciated.
I have had the PICC fitted and it ran pretty smoothly so I start my new regime tomorrow. My oncologist has made it sound like I’m not going to be able to get out of bed due to fatigue caused by the carboplatin over the next few months! I guess I’ll just have to wait and see.
Coffee and cake I had minimal SE’s last time and still had a complete response to chemo so hopefully you will have the same. Just another of the the irrational thoughts that go through our minds these days!!
Thanks for the Limbo recommendation Coastal, i have been given a waterproof sleeve which I will give a go but no one measured my arm so I hope it will be tight enough, if not I will be on Amazon.
I had a fairly mild response to my chemo (incredibly tired but outside that I did well). I asked my Oncologist does this mean the drug is/was not working - he said 'no' not at all - everyone's body is different some fair better than others - but the drug remains the same irrespective of how you react to it.
@Coastal im glad to hear you have bounced back today! Hooray for a good day - long may they last x
I find it interesting how we all have such different reactions to the treatment even with exactly the same drugs. I find myself wondering if it’s better to have a big reaction to the drugs as that means they are working and my lack of reaction means the chemo isn’t working? I know it doesn’t work like that but it’s one of those random thoughts that pops into my head!
Welcome @Michelle21 I’m sorry you find yourself back here but welcome to the group. I’ve had 2 rounds of EC so far and will have weekly paclitaxel after 4 rounds of EC. I don’t have a picc line but do have a port fitted which has been great so far and makes the transfusions really simple.
I think I feel like a medical marvel as so far I’ve had hardly any side effects (so far). I even said to my oncologist that I think they gave me some dud drugs as I am feeling so normal, but then my hair fell out 2 weeks after my chemo so I guess it was the proper stuff after all!
I hope you’re all able to enjoy the blue skies and sunshine we seem to be having (here in the UK anyway).
Beat wishes to you all x
Hi @Michelle21 lovely to meet you! I'm not on your regime, but will be having 4 paclitaxel in July/August. I've just had round 2 of 4 EC, which is every two weeks. I had the lumpectomy and full node clearance before the chemo, have 4 lymph nodes involved and grade 3 ER+ HERneg 6cm.
I hope all goes well for the PICC line - I've found it so much easier having it as no faffing trying to find veins for chemo and blood tests. I bought a limbo waterproof PIC line cover, which I think is really good. It makes it so much easier having a shower - I had initially tried with cling film but it didn't seem to seal properly so had to use tape as well - bit of a palavar! If you don't mind buying from Amazon, this is the link for the one I bought - https://www.amazon.co.uk/gp/product/B0056PS2CW/ref=ppx_yo_dt_b_asin_title_o01_s00?ie=UTF8&psc=1 you have to measure your arm before you order to get the right size. I have a weekly appointment with the community nurses IV team who flush out and check the PIC line weekly and do the blood tests before the chemo.
Thanks so much for joining our group - it must be difficult to be back here again for you, great to know that you did move on after cancer, and you will again. I'm definitely embracing life much more now than I ever did before, it does really make one re-evaluate ones life and make the most of it.
lots of love xxx
Hi @TicTok Really good luck on Thursday! My 2nd chemo went okay - had a bad 2nd day but totally bounced back today phew! Take care xxx
Hi @coffeeandcake so glad that you had few side effects with your 2nd EC. I've just had my 2nd EC on Monday, felt absolutely shattered yesterday, with sickness, aching and tiredness but have bounced back today thankfully. I have 4 EC and then 4 pactixacal every 2 weeks. The team decided to operate first as initially I had a grade 2 lump with only 1 lymph node effected, I'm also ER+ and HER2neg. However, following surgery, this was actually much bigger - 6cm grade 3 with 4 lymphs. I think there has been so much research for breast cancer to make sure we are on the right treatment pathways for our particularly pathology, it feels very reassuring. I hope your treatment continues to go gently for you, I only have a 14 year old daughter at home (rather than early years), but remember how tiring it can be. I had a difficult first EC, (really bad constipation) but have been having movicol which is working so far! yay!
Love to all xxx