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MAY 2021 CHEMOTHERAPY STARTERS

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

welcome @Coastal @to our group.

I know the whole journey is scary (been diagnosed in February, got two surgeries, got my second round EC on Monday). You will have good days and bad days but you will be surrounded by very competent medical team that can help you go through it. For example, they reduced the dose for me and gave me another type of anti sickness meds to better cope and it worked well with my second round. I also find that physical exercises hep me to fight against the fatigue and give me more energy (which is great as I have two energetic kids).
Also, this group is always very supportive and together we will help each other to go through this journey. 

Waiting is the worst. Believe me patience is not one of my quality... and I am counting down the days to hopefully the end of it. 

I have not tried cold cap (not offered here where I am). Few in the group have tried and can give you advice. I went for the short hair cut 4 weeks ago to get use it it and now  they are starting to fall off. I am probably going to shave my head this week-end. I have bought a wig, beanies, caps and scarfs and I will use them depending on my mood.

Stay strong, we are here to support you

Poacher65
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi Everyone 

Hope you are all doing OK.

@Coastal welcome to our little group. You will find strength to get through this with good and bad days but we are all in this together so are here for support and encouragement ❤

My 2nd EC tomorrow at 9am...hopefully i will cope as I I with the first dose. 

My hair situation is getting worse...now have lots of bald patches and it's very very thin to the point where I can't hide the bald areas so wearing a bandana most of the time as hair also falling out onto everything!

Spoke with my nurse yesterday who suggested I have cold cap again tomorrow and see what next week brings. 

I am more or less at the point of admitting cold cap not working for me and taking control of my hair loss and shaving it off. I'm strangely resigned to that but upset too. I absolutely do not regret trying cold cap and would encourage everyone who wishes to try to keep their hair to try it....it was easy to tolerate for me....just not worked unfortunately. 

Any words of wisdom for me on the hair front? 

Have a good day all...take care xx

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi I'm starting chemo on Monday and would love to join your group, I hope it's not too late in the month?  I was diagnosed in march with grade 2 BC hormone positive, her neg, had the op and found out that it was actually grade 3 with 4 lymph nodes involved ☹️ I've been v anxious since the diagnosis and found the whole waiting experience v hard.  I'm having a pic line put in this week then start on Monday 8 sessions every 2 weeks EC and paxitaxol.  I'm going to try the cold cap.  V scared but know it's something I've got to do.

Best wishes Nicki

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Morning all it’s nice to here you are all improving a little ... my nurse rang yesterday, talked me through the horror story of what can and cannot happen 😳but hearing that you are all doing ok helps . I have my first session next Thursday and have chosen to give the cold cap a go as I would only have to have it 4 times as my next 4 with a different mix don’t make the hair come out .  Love to all x

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Karden

Good luck today with your 2nd round. Good to hear that your mouth ulcers are almost gone and they have adjusted your dose too. 

Lots of strengths sent your way💪🏼

Karden
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running I'm so pleased to hear that you're having a much easier time. It sounds as though the lower dose is better for you.

My mouth ulcers are almost gone and no longer painful and my oncologist will reduce all 3 FEC drugs which should prevent a recurrence. My 2nd Chemo is tomorrow.

Hope everyone else is coping well. Sending hugs and best wishes. 🤗

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning,

How is everyone today? Just want to wish you all strong ladies a very good day.

Day 3 following my second round EC and I start to get my head out of the clouds. This second round has been much gentler on me than the first (lower dose and new anti sickness meds). I hope it will continue uphill from now until next round. 
I hope you are coping with your treatment and getting better, lots of rest and well deserved peace. 

Keep on fighting! We are strong. We can beat this. 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@coffeeandcake 

I have also taken Pelgraz and been told that bone pain can occur especially leg and lower back or even the rib cage.

To shorten the neutropenia, Pelgraz boosts the bone marrow to produce more blood cells. 

I have got some pain last week after my first round but it was more like training aches. This was in turn bad as my blood count was very low after the first round. 
I have found that gentle Pilates exercises helped me (I think) with them. 

I got my second round yesterday and it went smoother last night as I got a lower dose and new meds. But I need to take my Pelgraz shot today, I will let you know how it goes. 
 I hope your bone pain is manageable and will ease soon. Our body and mind are strong. We are strong! 
take care

coffeeandcake
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Has anyone experienced bone pain setting in after the chemo? I’m on day 7 now and my thigh bones are starting to hurt a little. I took the Pelgraz injection 24 hours after my first EC last week and have heard it’s that injection which causes the pain as the bones are hard at work making new bone marrow x

coffeeandcake
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running  I hope today went ok for you x

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi Karden thanks for that I will ask the question , I have a heart scan next mon but still not heard from chemo yet , I am really trying to enjoy our holiday for my husbands sake BUT it just doesn’t go away 😞x

Karden
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running I hope you continue to feel reasonably well and that the nausea stays under control. Keep taking the meds and don't let it beat you. 

It's surprising how much weight you actually lose when you can't eat properly! 🥺🥺

Karden
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok  I will also have a total of 8 cycles. The first 4 were Dec to Feb (Docetaxel), then a lumpectomy and sentinel node removal. I then started again on 29th April for 4 more cycles (FEC).

I am on the ROSCO trial though and this is what happens, is anyone else on a research trial?

I know that everyone has personalised treatment depending on their own situation but maybe ask your oncologist why you are on 8 cycles?

Sending best wishes. x

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Karden Thank you for your encouragements 💜. I am ok for now, light head but nausea has not kicked in yet. Crossing the fingers. 

I really hope your mouth ulcers will heal and you can get some peace and food. I hope they can adjust your next round on Thursday to be gentler to you. They did it for me this round. The weight loss is an issue - same here. 

take care - let’s keep on fighting. Have a lovely evening.

ClaireS1978
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Purpledaze 

Thank you for the welcome.

Extra hugs on emotional days sounds like a good way to help 🙂 I hope everything goes ok for you on Wednesday x

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Morning Good luck for today hope all goes well ..... I have got to have 8 sessions 🤷‍♂️Is that unusual..... I want it to start but I am dreading it ....... take care everyone xx

Karden
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Loved the photo @noodledoodle , thanks for making me smile.

I still have mouth ulcers but I think I'm over the worst as the pain seems less and I'm managing to eat a bit more. I have lost 3 pounds in weight but I wouldn't recommend this weight loss plan to anyone! 😟

I'm going to the hospital this morning for bloods and Covid swab and then 2nd chemo on Thursday. I must admit that I am anxious knowing that I still have the mouth ulcers but hoping that it can be improved by having a reduced dose. My telephone appointment with my oncologist is tomorrow morning so I will ask what can be done. I have read that all 3 FEC drugs can cause them.

@Love running  I hope your 2nd chemo goes well.

To everyone who is struggling with side-effects, hang on in there, it will get better and we have to remind ourselves that the tumour is under attack!

Welcome to new members, you will find this forum an amazing source of support. 💜

To those who are feeling quite normal again, enjoy it and find nice things to do.

Xx ❤️❤️

 

coffeeandcake
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

I hope you’ve all had a good weekend. Good luck to those having treatment this week and positive vibes for those feeling a bit rough x

worriednow
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hello lovelies

yes the first chemo is done . Not doing good today . Since it’s bone mets I have achy bones. But I have to go through this chemo for my tumour to shrink so will carry on hopefully . Lots of virtual hugs for all of you 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@noodledoodle thank you for putting a smile on my face. Love the picture.

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good night everyone,

I hope you had all a nice/nicer/nicest week-end. I wish that the coming week will bring you peace, rest and normality in your lives. 

Tonight, I will gather the strength, fight the anxiety and let the fear tears running down. 

Tomorrow, I will go for round 2 of 4 - this means 50% of the first part of journey will be soon behind me and I will get closer to the end. 

Sweet dreams to all of us 🌺

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Poacher65 I wish I could give you a bear hug - so here comes a virtual hug. 

We got this and we will go through it - and yes we will cry a lot and we will be angry. But we got this!!!! 

We will keep on fighting and we will be stronger at the end of this journey.

'This is only temporary, love yourself through it' - Lalah Delia (another good quote I liked)

 

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Poacher65 

Tomorrow is another day! I think we are all emotionally unstable at the moment and no wonder! We will all come out the other end stronger and more appreciative of the simple things in life. Until then:

noodledoodle_0-1621188297631.png

 

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running 

You are so right about the positives of this horrible experience, it certainly makes you appreciate the wonderful little things in life that passed us by before. It is definitely a positive!

@Purpledaze well done on the hair!  I certainly don’t regret it, although will be glad when the bristles have gone😂😂 getting quite used to my wardrobe of scarves and wigs. 
I am on day 7 of chemo one and have felt quite normal today. Enjoyed lunch out in the sunshine, a nice walk and an online exercise class ( took it gently!). Exercise definitely boosts the spirits. 
Highlight of my day tomorrow is a Picc line flush and dressing change😂😂😂

Just glad not to be taking those shed load of anti sickness meds and steroids for a while. 
Take Care everybody and hope all of you are okay xx

Poacher65
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi Everyone 

@Purpledaze @Love running 

Had a rubbish day today emotionally. Feel so sad and angry this is all happening. Cried on and off all day which has just made me cross with myself. Big girl pants required😊

Anyway, tomorrow is another day!

Hair situation not looking hopeful...had cold cap but lots coming out today, going to keep going with cold cap and see what round 2 brings this next week. I have very thick hair so no one would know any had come out but its awful everytime I touch my hair some comes out. It's the weekly wash which my gorgeous husband does for me and I'm dreading it ...seeing it all come out in the bath. Maybe I'm being over dramatic and need to be more positive as they did say it would thin a lot even if I kept my hair. 

Anyway, enough moaning....I hope this next week goes well for all of us....Will post later I'm week as working so may not get on the Forum much. 

Stay strong....'we've got this' xxxxx

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hello everyone, I hope your Sunday is the best it can be for you!

@Selma59 sorry to hear you had such a difficult time on your first chemo! That sounds really tough.  I hope you will soon start to feel less sick and a bit stronger.  Your son sounds like he is a great support.

Like you I had a lot of sickness (but no heartburn) that started on the same day as my chemo; I had also been given some antisickness (ondansetron) & steroids before the chemo but was then told to start with these at home from the following day, so I didn't take any more on the same day.  I don't think that worked for me and I will talk to my doctor/nurses about my antisickness meds ready for my next chemo this week.  At the time I called my rapid response line and they were really helpful.  I've called them any time I've felt unsure or worried about my symptoms, and they really help me.  I really hope that you can discuss your side effects with your medical team/doctor and get the right meds for you.

@coffeeandcake I'm also having EC every 3 weeks. Didn't know it could be given more frequently, that's interesting. I will ask my doctor just out of curiosity to see what he says about this.  However, I'm happy and confident with my clinical team and the treatment they have proposed for me up to now.  I've also just had my portacath fitted (Friday) and am due bloods on Monday and then chemo #2 on Wednesday. It's still sore today, so I hope it will be ok by Wednesday at least, or I think my veins will go on strike! 😂

Welcome to the forum @ClaireS1978 , sounds like we are in sync: I had my port fitted the same day as you and will also be having chemo on Wednesday. I'll be sending lots of positive thoughts your way!

I've also had some emotional moments, some come out of the blue, and others I understand more why I feel that way.  Like others have commented, I think the steroids made me more tearful, but to be honest I think the pain, uncertainty and anxiety that we are facing is enough to give us reason to cry!  I've told my husband not to worry if I cry, but just to give me an extra hug.  I know it's a cliche, but I do feel better after bawling my eyes out - like a kind of release.  As long as my crying can stop (and it does), then I figure it is therapeutic for me and "better out than in"!

I hadn't heard of Jennifer Young products - you make them sound good, so I will check them out as my skin does feel drier and itchier since starting chemo.

@worriednow how are you feeling now since your chemo?  Hopefully things are going ok for you 🤞 Sending a big hug

@noodledoodle your comment about 'bristles' re- shaved head made me laugh - I can't get over the bristly feeling and it's such a weird feeling when my head is on the pillow 😂 

@Poacher65 I can imagine your disappointment about having to have chemo on your anniversary!  I wish you a symptom-free rest of that day (at least!) so you that you can spend time with your husband doing something nice to celebrate. And if side effects mean you just don't feel up to celebrating on the day, perhaps you can be distracted from how you are feeling, thinking and planning what you will do to celebrate later when you feel better.

@Karden have been thinking of you and hoping, hoping, hoping that your mouth ulcers are on the way out and causing you less pain!

Take care everyone and may next week go smoothly for us all 🌼 xx

 

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running your balcony sounds like an oasis!  There are signs of life from the radishes I planted, so there's hope yet! I'll let you know when I eat the first 'harvest' - hoping it coincides with a good day when my appetite is up 🤞

I ended up shaving my hair off last Thursday - I think I could have lasted a few more days without the hair loss being very noticeable, but it was annoying me to have hair coming out in my hands / brush every time I touched my hair.  My husband helped me shave it all off - we really laughed and laughed!  It feels good now but much colder!  

I'm so glad to hear you've been able to keep up with your running! It sounds like it has been a big help for you physically and emotionally.  I hope my next cycle of chemo is similar to this one, and I feel well enough again in the second half to go for long walks with my dogs.  I've had to stop this weekend as I'm too sore from the Port insertion - nothing serious, but feels better to keep still rather than moving about too much. 

Hope your Sunday has been good x

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Purpledaze I would love a large garden (and a house actually) and my kids are begging for a dog every day. We live in a flat, so no garden and no dog (for now). 

It seems that we are the same type of gardener you and I. I have put some many seeds in the same pot (there were so tiny) that now I have a mesh of salads growing together. 😂😂. This afternoon I am going to try to separate them to replant them. Been a bit more successful with the strawberries which are blooming. The hopes are high to have some to eat by mid-June or end of June (I am in Sweden). The kids are so excited. My coriander and mint are growing like wild grass, and my basil and chives are getting there. 

Like you say, it takes you mind off chemo and it forced to look up recipes to use all these herbs in the future.

I wish we could exchange and share our production😀. Keep you posted of the progress.

Otherwise, how are you doing? you were saying that your hair had started falling off and you would go for a shave. Have you? I had cut my hair short before and now at Day 14, there are still there. They have not fallen yet (few here and there) but expected it soon (no cold cap either). 

Have a lovely Sunday and see soon

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Selma59 I am so sorry to hear about your first chemo session. Sounds dreadful. I hope you will feel better soon. I am glad you get help from your son.

I know that we all have different schemes and protocols to follow but I am a bit surprised that you have not received anti sickness meds before the infusion. I have to take anti sickness meds 1-2 hours before I take the infusion (27 pills in total including betametason, Ondensetron and Emend), then fewer pills for another 3 days. I am changing a little the meds for my second round, my oncologist is trying to reduce the nausea from the first night. Hopefully it will work out.

Thank you for your explanation on the every second week versus the every third week. I am doing every second week and like @Kitkat23 was saying, I am under 60 (mid 40 going closer to late 40 actually😅). I trust my medical team to know what they do and hope my heart will not get affected. I met my oncologist on Friday and she said that they will adjust my second round as I lost weight and my blood count went too low down after the first one. 

I am quite the sporty type and I am very much into running. I hope that when all this is over, I can get back fully to trail running. I have read a lot about physical activities and chemo and it seems that it does help against the side effects and also it might prevent relapse. My oncologist also encouraged me to continue to exercise. As she said, you know you body best, so listen to it and adjust the intensity. This is positive! I will try to continue to run through chemo, even if it is only short and slow stretches. I will enjoy and cherish them all. I have focused all my strength the last 2 weeks into getting some kind of physical activity every day: minimum 30 min to raise my pulse (walking, biking, Pilates and running). I can say it did not make me feel worse, instead it gave me more energy. I also believe that it helped me a lot with the muscle/bone pain following the injection of GMCSF, as it was not bad (more like training aches). I hope it will stay that way for the rest of the rounds.

This week, I felt 'normal' and yesterday morning I managed a long slow run which I really enjoyed and I am so proud of. It was early in the morning in the woods, I encountered few deers and listened to the song of the birds (even heard a woodpecker). Pure joy! I almost forgot that I had BC and I cried of joy at the end. 

You are asking about the steroids - I agree that I felt more vulnerable for one or two days after stoping them and on the edge of crying few times. I cried watching the news on TV. I allow myself to cry any time to get rid of it inside. I cried at the end of my run too...

Keep on fighting, better days will come. 

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Poacher65 ❤️ I hope you can do something special with your husband on your special day. Whatever it is.

You are right, we are lucky to have them. I also have a very supportive husband. He actually reduced his working time to 80% so he can get the Friday off to help out more home and with the kids but also to be able to spend time with me when I need it the most. The first Friday he was off (one week post treatment), we went biking in the forest and had a lovely coffee by the water. In our busy lives, we never took the time. Something good with the situation. Feel blessed.

Shi
Community Champion
Community Champion

Re: MAY 2021 CHEMOTHERAPY STARTERS

Selma, sorry your first round of chemo has been so harsh, everyone reacts differently to their chemo as it is specifically tailored to you. Always ring your rapid response numbers as first point of contact if you don’t feel right or your antisickness meds not working, remember speed at calling your teams is important during chemo, don’t think ogg, I’ll see how I am in a few hours, things are not like normal during chemo and your teams need to know so they can get you safely through. Step by step you will get through chemo, be kind to yourselves and do all you can to help your teams help you by ringing them ❤️💕💕Shi xx

Selma59
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi everyone,

First of all, thank you all for your kind replies. It feels so good to share and get responds..

Unfortunately, my chemo hit me really hard. In fact, my son is typing this for me at the moment as I speak because I can’t even do this myself. I would like to share as much as possible so that others who might be joining this forum can read and learn about possible side effects. 

My first chemo took only 2 hours. They gave me one antisickness med called Domperidone 10mg (was told to take it 3 times a day starting the next day) and steroids (Dexamethasone, again starting next day for two days). When I was at home, I felt just fine. Nothing was happening at the time. Then I started to get a little nauseous.. I laid down but it got worse. Because I was told not to take any med until next day, I didn’t but it has gotten so bad my sons had to call the helpline. What was worse than the nausea was my stomacheburn.. it was so bad that I closed my eyes and stopped responding to my sons.. the helpline told me to take one antisickness med and one nexium (heartburn med). I took these around 11pm but did not help at all. It kept getting worse and worse. I somehow managed to sleep for 2 hours at some point but woke up to nausea and more heartburn. It was so bad that I couldnt move my body so my sons had to hold me and move me in bed so that I could sit upright. I had to take another stomache burn drug (the one I had been prescribed for Naproxen bcs of my foot problem) which eased it a little but to this time, I still suffer a lot from heartburn. It felt like the steroids they gave me made it worse. Once I took the steroids, my stomach started hurting more. I am still dizzy and can’t eat or drink really. I also have dry mouth that I keep spitting. 

My understanding is that the antisickness tablets (Domperidone) are not really effective for me. I think I need another one. Sadly, I was only given this so I have to take this nausea.. I hope they change me to another drug for the second AC... Heard Emend is a good one. what drug did you all use and did it really help? Did you also have heartburn? 

Now I want to answer some of your questions in this part 🙂 I made my son read all the posts out loud to me :). Yes some hospitals do dual dose and some do every 3 weeks. If you do dual dose, it is harsher on you (mine is dual) hence you need white cell injection boosts. There are some advantages and disadvantages of having AC or EC every 2 weeks: research say that it increases the likelihood of cancer not coming back but on the otherside it is heavier on you (especially on your heart) and the damages are not reversible... if you do not have a strong heart like myself, it is possible that it will weaken your heart and that will be a big problem..

Lastly, I want to say that it is normal that you feel your lymph nodes after the biopsy. That happened to me too and it got me worried that it had gotten bigger but apperantely, once you have a biopsy done, then your body reacts to the procedure and surrounding area might swell. So possible to feel it much more after a biopsy. 

In addition to my questions on which antisickness meds you are taking and whether you had heartburn, I also want to ask how you felt after you stopped using steroids? I heard you feel depressed.. I started doing my white cell injections today and I am really worried that it will hurt later.. how did you cope with that? Any tips there?

 

Please ask me as many questions as you want. It feels really good to share and I would be so happy if I can help anyone. 

Many kisses from me.. Once I can open my eyes, I will write another post by myself. Talk to you all soon!

Poacher65
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running we will do something together I'm sure...not the meal and weekend away we had planned but we are together and that's all that matters to me. He is my world ...and has been amazing since my diagnosis.  ❤ xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Poacher65 although you have your second round in the morning of your wedding anniversary, you might still enjoy a nice lunch/ walk or celebration with your husband. There are few hours between the infusion and the first side effects.

I will have one of my infusion on my birthday (instead of being on the beach south of France as I had originally planned for this summer). 

 

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok glad to hear that your mind got some peace. I had and have many irrational thoughts/frights in my dark moments. 

I hope you are enjoying your week-end. Take care

Kitkat23
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi coffee and cake

i finished chemo last November and had 2 weekly.....I think it depends on your hospitals criteria for the EC protocol.... at my hospital the criteria for 2 weekly dose dense is less than 60 years in previous good health.....anyone else has 3 weekly ....but I would imagine that different hospitals have different criteria.   You may be able to find the protocols on the hospital website ( I’m at clatterbridge cancer hospital and all the chemo protocols are listed along with criteria).... or maybe ask you oncology nurse.

take good care 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@worriednow I don't know the drug pracimetal. I am glad you have taken it well and I hope you are feeling better and better. I am at day 13 and feel 'normal' again.

I also have children for whom I want to stay strong and be brave. Two girls (9 and 13). I did tell them the truth (adapted to age of course) about my condition and the treatment. 

I also told them that I was scared and I would need them to hold my hand through this journey. They are an amazing support, they are helping more at home and are growing more independent. I am so proud of them.

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Just wanted to welcome you @ClaireS1978

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@coffeeandcake I am on a dense dose with the 2 week cycles. My next round is Monday. I don't know the rationale for it. Could be that it is more common here where I am. No idea.

I met one of my two oncologists on Friday to check if my blood values were good enough to get my second round. The night before going to see her, I did not sleep well and was very anxious. I so want to get it over with, that I don't want any delays. But all night, I had all the scenarios in my head and I sort of freaked out. Finally, I will get my next round as planned. 

But I have been told that the next round will be 'lighter', it appears that the first one got me too low on my blood count. I have also lost some weight after this first round, so there is a need to adjust. I hope this second round will not take me down completely. We will see. 

 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Morning thank you for that it was around where I had a biopsy , you have put my mind at rest but I will be monitoring it . I know they know what they are doing but my head thinks otherwise. Thanks and take care xx

coffeeandcake
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok  first of all deep breaths. I hear you!  None of us can know what that lump is. All I can say is after my breast biopsy and node biopsy I had massive lumps appear where before I couldn’t feel anything. In my case it was swelling from the biopsy and took weeks to go down again. If you are worried call your BCN team and I’m sure they’ll be able to help you.

lots of love x

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hello everyone I am having a sad evening ! Just scared myself 😟I had never felt a lump at all but I have just felt one the size of my thumb nail under my arm and it’s scared me to death , I think that is where they tested a node but not to feel it before has worried me that it is growing fast !! Has anyone else felt one there ? I just want to start my chemo now 😭.... not a good start to my holiday xx

coffeeandcake
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Quick question for those on EC... I am on a 3 weekly cycle but have read about ‘Dense dose’ which is given every 2 weeks.  My oncologist said it made little difference but I read a few studies in America that said long term survival rates can be increased with the dense dose. 

I just wondered if anyone else had experience of 2 weekly cycles instead of 3 weekly?

 

thanks x

coffeeandcake
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi ladies,

I had my portacath fitted on Monday and started EC Tuesday. They couldn’t use the port as it was too swollen but managed to warm my hand enough to get a good vein. 

I cold capped which was fine after the first 10 minutes. Hoping it helps even a little!!

I had a restless night Tuesday as felt emotionally drained and my brain was running round in circles with all the new info. But I’m pleased to say that since then I have felt more or less ok!! I took my anti sickness meds which seemed to have done the job. Now my mouth is starting to feel a little dry but I have a good mouth spray from Boots which does the trick. 

I just wanted to say hi to everyone and welcome to our new joiners. My diagnosis is grade 3, inc spread to nodes. ER+ HER2 Neg. I am having 4 rounds of EC followed by 12 weekly rounds of paclitexl. Then surgery & radiotherapy. So I am at the very start of my journey. 

lots of love to you all xxx

ClaireS1978
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @noodledoodle 

that’s so good to hear that you can cope with your symptoms and nothing too bad. I really hope that continues for you.

I have ordered a wig, which is due in the next couple of days. They really do look amazing now. I bet it actually feels nice to just put it on and not have to worry about styling it 😊 

ooh I’m glad you like the Shea butter, I’ve not tried any yet. I’m just using the last of my retinol and vit c whilst I still can 😩

Think I’ll put some lollies on my shopping list and try and hide them from my 8 year old son 🙈 .... thanks for the tip 😊 xx

 

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @ClaireS1978 

I started my EC Monday and am now day 5. I had one rough night on day 1 and the next 4 days of just feeling a bit woolly headed and spaced out ! It hasn’t been,so far, as bad as I anticipated.

I do have a dry mouth too and a slight change in taste but do find iced lollies help and sugar free chewing gum definitely gets the saliva flowing  

Finished my anti sickness meds yesterday and so far so good  Beginning to be drift back to feeling more normal ( whatever that is!)

I have the Jennifer Young Shea butter for face and it is lovely  makes your skin feel soft, without irritation  Haven’t used the scalp stuff yet as I shaved my hair off before chemo, which I am glad I did, but everybody different, and is too bristley at the moment 😂😂

Have a nice wig which I wear far more than I thought I would and some nice scarves  I never ever thought I would wear a wig confidently, but I do  They are so good these days, you really can’t tell and are actually much easier than faffing about with actual hair  May become a permanent wig wearer after all this😂😂

Hope everybody else is doing ok  we will get there!

@Karden, hope your mouth improves soon  sending hugs xx

 

 

ClaireS1978
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi all, I joined the forum about 3 weeks ago, I haven't yet commented but reading everyone's posts have really helped me cope over the last few weeks. 

I was diagnosed with stage 2, grade 3 breast cancer 4 weeks ago, it's been weeks of tests, scans and different appointments but having my port fitted today made it feel like this is actually happening to me and I just broke down in tears.

On Wednesday I start 4 rounds of EC every three weeks, then move to 12 weekly sessions of paclitaxel. I am going to try the cold cap, although my oncologist said there's still about a 60-70% chance that I will lose my hair. I have ordered a silk pillowcase, a sleep cap, I've also been told to bring a resistance band to hold the cap down, not sure if it will help but I'm willing to try anything. I am struggling with what shampoo and conditioner to use. I have Olaplex at the moment but I'm not sure if it will be to strong to use during chemo. 

I'm really worried about what side effects will come from the treatment but I guess it's a wait and see. I have purchased lots of natural face and body products from Jennifer Young, I'm hoping this might help with the dry, sore skin and nail issues that people have said they get. 

Good luck to everyone going through treatment xxx

 

 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi and welcome to the may group . I know how you feel you can’t believe it’s really happening . I have not had my 1st chemo yet should be the week after next , I have stage 2 breast cancer in nodes and got to have 8 lots of lots of chemo 😱before the opp . Glad you are feeling ok that gives me hope .... take care x

worriednow
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hello 

I want to message to all in may group can’t get my head round it. Well had my first chemo yesterday praxcimetal drug for 1 hour infusion. Feel fine today . Did take the nausea drug even though I feel ok . Don’t know how rest of days will be . Would love to chat with ladies on this drug. Iam determined to feel ok for my children who are too little . Feel sad. Cannot believe breast cancer spread to bones 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Karden I am so sorry to hear about your pain. I hope you get relief soon. Send you lot of hugs and positive vibes.