January 2020 Chemo Starters

[Salsa140]

So sorry to hear this. Haven’t started yet but from reading through these posts your symptoms don’t sound that unusual just that everyone experiences it differently. 
Take care of yourself and speak to the nurses and oncologist. My team have told me nausea is treatable but I fear some of the other things you mention are more difficult. 
I find the anxiety of the next bit the worse. I do have bad moments. You need to be kind to yourself. Sending love. 😘 

[Sally63]

Hi everyone

I am on day 6 of my third cycle of EC, I feel so fed up and tearful about the effects, weakness , nausea, fatigue, lack of appetite and if I do try to eat everything tastes bitter. Does anyone else feel like this? Any ideas on how to feel better? It makes me dread my next 3 cycles.

[sunnybear]

Hi Sally63,

allotments are the best for mental health and so absorbing. My husband knows if i say I am going for an hour he won’t see me for 3 or 4!
different this year and like you I am waiting for the warmer weather to see what I can have hopefully all the soft fruits will look after themselves.

hugs Sunnybear

[LornaJ]

Hi all, 

Saw my consultant yesterday, the best person to ask all your queries, I went armed with a list.

So I'm having an mri now I've finished EC and now moving to taxol. I was told upfront what I'm having and she thinks I'm responding well to treatment. I also queried my next steps and asked why I was on 2 weekly taxol, I'm on accelerated chemo so every two weeks x 4 rather than 12 weekly. Everyone is different depending on the type of breast cancer, grade and how far it's spread and age of patient.

My sister is getting married on 1st August in France and I asked if I could make it. It's going to be very close. I have had to pull out of her hen do because of the mastectomy will be around that time.

Glad you had a great response to your picture Sally.  Although I've told people I know on a daily basis, I've not gone public on Facebook.

Lx

[Sally63]

Hi sent before I finished! So just saying my FB profile pic is now me in one of my headscarves, feels more authentic than my previous profile on a beach. FB friends have been so kind in their comments, it has helped me to feel much better about how I am.

Hope the next week goes as well as it can for everyone, 

Hugs, Sally x

[Sally63]

Hi everyone, it’s good to hear how you’re all doing, I am having my 3rd EC on Wednesday, not looking forward to it as I have found after 2 that I was unwell for about 10 days, now feeling ok and must start again. It’s strange but I found last time that drinking any kind of liquid was really unpleasant but I had to keep hydrated so forced myself. Anyone else had this?

I go on to Docetaxel x 3 next and don’t know what to expect. No one has mentioned any further scans but I think I see the oncologist after this cycle. 
About the PICC, I absolutely dreaded it but once it was in I hardly notice it and it’s certainly easier than being cannulated each time so for anyone waiting for their PICC, please don’t worry. It doesn’t hurt and you can’t feel it inside yourself! I have lost all of my hair and decided to just go with nice headwear rather than a wig. I changed my FB profile pic to one wi

[furns85]

I had my PICC done last week. I was anxious about it even though everyone’s stories I read and everyone I had spoken to had said the thought of it is worse and  they were right. It was done it a clinical space but it was very relaxed/informal and done super quick. I can tell it’s there and there is still a little bit of bruising which they said is normal and that it’ll take a week or two to ‘settle’ as such. 
I don’t love it but that’s more in my head I think and my hand was so tender after my first treatment that I’m glad for it as my second one was last week and it was administered easily so it is serving its purpose! ☺️ 

I was wondered when I’d get a scan too, my oncologist mentioned about half way when we first met but I’ve asked them to confirm when so I’m hoping I’ll be roughly told when it will be this week. 

Sending my love to everyone this week. I’m glad my fog has lifted today, it seemed to have lasted an extra day this time and that felt hard (even though it was just a day). But I feel ecstatic today, happy days ❤️❤️ Xx

[helsbels20]

Hi Daisy I’ve already had a lumpectomy.  My doctor is giving me 4 EC and then 12 weekly taxol plus Herceptin and then radiotherapy after the taxol.  I had a small but aggressive lump removed in November.  Does that all make sense? A couple of friends have had the same treatment which I have found reassuring but then again everyone’s journey is slightly different so please don’t worry 😘

[Daisy D]

Hi 

Could i just ask helsbels did u know you only needed 3 EC  at begining or did you have a scan etc ? 

Its only that i wondered how it all works. Im seeing oncologist next monday. First time since treatment began in 4th feb but i havent had any scans or anything. Just wondered if this was normal ? 

Starting 2nd cycle tomorrow of paclitaxel and Carboplatin. 

Thanks 

Love Daisy xxx

[Daisy D]

Thanks Jem for the information glad that you managed on the EC . Ive got my pactixel and carboplatin tomorrow 

Good luck with MRI too and the Picc line . I have the cannula at the moment  but hopefully someone can help regarding line. 

I found if ive read through previous threads its answered some of my questions. Also the ladies on 2019 feb thread have replied and its nice to see how they have reached the end of treatment and its all a distance memory like it will be for all of us

Love 

Daisy xx

[jemmalou101]

Helsbels20 am the same , treatment Wednesday and today is always my yucky day, lack of energy and no motivation. Good luck with the last one, I only needed 3 EC so moving onto taxol in 2 weeks... feels nice to see the back of one stage and moving on! Xx

[jemmalou101]

Hi daisy, to be honest I have found EC really bearable too. Not had any sickness, hair loss happened even with cold capping but wig looks fine, and I actually don’t mind just wearing hats it’s only temporary and shows at least that chemo is working. I have treatment on Wednesday am normally tired for couple of days (days 1-4) feel a bit crappy today day 5 and then I tend to be back to normal! So hoping that’s going to continues and then I am ok on taxol, nurses said if I can cope with EC then taxol SHOULD be a breeze! I hope so!

I had a MRI on the 12th feb to check the progress but haven’t got results yet as not been back into see consultant or oncologist, so will find out next Tuesday. I feel it’s changed (more soft) but I don’t think size wise it’s changed but time will tell. 

booked to get PICC line as struggling to get veins and with 12 weekly sessions coming up nurses advised best option. Any one else have a PICC line and can give any advise or any tips!? 

jem xx

[Daisy D]

Hi lorna 

Good luck with your final EC treatment today and great news about your hair too   

Best wishes 

Daisy x

[LornaJ]

Hi,

Helsbels, Listen to your body and maybe go after you've had some lunch, I've just had a walk pretty grim out there and off to my fourth and final EC today. I still have my hair whoop! Although shedded a lot after I washed my hair this week so I'm delaying my next shower to post chemo. So another cold cap for me armed with a few more nausea tablets after what happened last time. I'm on two week cycles so I just begin to feel back to myself and then back on the chemo. 

I'm going to ask today if I get any scans etc to see how it's all going.... The lumps under my arms have definitely shrunk and I think so has my breast but it still feels rather lumpy.

Good luck this week girls. 

Lxx

[Daisy D]

Hi Jem 

My regime is the other way round to you . I have been on paclitaxel  weekly then every 3 weeks  carboplatin.  So far have been managable . Have had cough /,stomach cramps and muscle aches. 

How did u find the EC treatment ? 

Have u had a scan or anything before switching treatments ? 

I just wondered what the regime is ? 

My hair started to fall out / thinning  after day 21 on the paclitaxel. I did go for a wig fitting and must admit it was much better than i thought. My family didnt notice ! I think its a case of wearing it to get used too as it does make my head rather warm .

Wishing you all the best with your treatment 

Daisy x

[helsbels20]

Hi Ladies

just thought I’d check in and see how everyone is doing. Had my 3rd EC on Wednesday so 1 more to go 👍 feeling a bit grim today but Monday has been my worst day on the last 2 cycles so hopefully I’ll pick up tomorrow. Just trying to get the energy up to take the dog for a walk although he’s looking very happy curled up on the sofa! Suffering lots with hot flushes and night sweats so just waiting for my doctor to get back to me about acupuncture as my nurse said it could help. Hope everyone is doing okay 🤞👍 xx

[Sally63]

Hi Sunnybear good to meet another allotment holder! In my life before breast cancer my allotment was my therapy for life stress, planting and growing is so absorbing and rewarding. But like you I just can’t do it now so I have decided that nature can look after itself and surprise me when the weather is better and I feel up to it! Our earth and it’s treasures will still be there later on, I have friends who will help me restore it I hope you do too. Then we can look forward to new growth and a new start. X

[Shi]

Fe that’s good you’ve team who are taking care of you ❤️❤️ And supporting you ❤️❤️ Their care and kindness will help you greatly ❤️❤️💕💕✨✨Shi xx

[Fe2020]

Thanks, Shi

OK, will do! If not my mum will enjoy my massage! They do try and encourage us to use our voice in highlighting anything untowards as only we know our body! Think we women tend to take so much but they do try and keep us as comfortable as possible! 

Thanx x

[Shi]

Fe, I’d check with your unit regarding massages during chemo also if you are taking any supplements please check with them on those also. It can differ from trust to trust ❤️ You will find you settle into routine with the chemo ❤️ I found breaking them down into cycles helped, you do what works for you ❤️ If your antisickness meds don’t work, ring your unit and tell them they will tweak them, you don’t need to battle through. I was lucky no sickness or loss of taste during chemo. Do mention your ports tender so they can keep eye on it or give you some meds to make you more comfortable. Sending ❤️💕💕✨✨Shi xx

[Fe2020]

Hi Sally

Thanx for taking the time to write about your experience to date. Agree, surgery looks like the easy part!!! Chemo sounds really tough particularly the latter stages.

First lump found around my 56 birthday end of November, BC diagnosed in December mastectomy in January and first chemo in 2 days. Having lots of hot flushes before I even start think it’s worry. Overloaded with info as I just need to know everything! But that then tends to keep me up at night so trying not to read too much before bed.

Had pre chemo briefing yesterday for 90 minutes and another dozen books but assume they just need to prepare you for the worst! Arm is still very bruised from port insertion a week ago. Port worked for bloods yesterday but seems very tender. Feel like a wounded soldier! 

Fitted for cold cap. BCN said to wash hair before and bring conditioner and they will wet hair again before starting  when fitting cap. Any tips here on this?

Have booked a massage tomorrow evening before first chemo, is that ok? Of course avoiding arm with port, avoid under arm where lymph nodes were cleared, avoid mastectomy but mostly back and neck where I hold my worry! 

Thank you all for sharing so much during this journey we all share to different degrees.

fe x

[Shi]

Sunnybear ❤️❤️ If they do reduce it again your reduced dose could be someone else’s full dose ❤️ After my first one put me in casa nhs my remaining 5 were reduced dose 👍 I found getting bit of make up on helped with the hair loss, that and a lot of frenzied steroid induced wig buying, coloured ones, tinsel ones, 🤪🤪🤪I just couldn’t help myself 😁😁keep 💪💪💪and rest when your body tells you too, it’s a rollercoaster during chemo, just hang on there with the others and you’ll soon be celebrating with each other as you all start to come in over the line ❤️❤️💕💕✨✨Shi xx

[sunnybear]

Hi,

despite the dose reduction my feet are zinging, I mentioned this to my BC nurse who said they may reduce again but I am concerned that the treatment won’t be as effective, anyway I will see what they decide for next week.

My hair is also falling out, I have lost about 80% but it is an even loss and I can’t decide whether to have the rest cut off or leave it to nature. Though I guess I am starting to feel self conscious when I am out. Hair is such a defining part of us.

i am starting to get tired now and can’t walk as far as I did which is depressing as I know it is important to get out - I am frustrated that although planting loads of daffs in my allotment in the autumn I haven’t had the energy to go and see them! Hopefully the other allotment holders are getting the benefit.

take care and best wishes to everyone

Sunnybear 

[Shi]

Just to let you know I found rads a doddle after chemo. We called it the Sunbed lounge because it was like being on a Sunbed for a few minutes 😁 you will need to pace yourselves on rads it can give you fatigue, so drink lots of water and rest when your body tells you ❤️ Get at much air as you can to skin (think flowing kaftan) for in the house, ni bra or vest, and keep slapping cream on you can have a bit of a sizzle after the first week but you will be fine ❤️ When it gets near to rads ask away for tips and tricks if you need any from anyone on here. Our unit had music playing while it was being done so really did feel like being on Sunbed on the beach 😁hope this helps you all ❤️💕💕✨✨Shi xx

[Sally63]

Hi everyone. My hair started falling on day 17 and Has now completely gone. I decided against cold cap and wig and have nice headscarves and soft hats from the charity cancer hair help. Despite my own decisions on all this it is shocking ands upsetting to see myself so differently but I am gradually accepting it and friends and family are really supportive.

i had my mastectomy first, I found it traumatic but it has healed well and on balance I think the chemo for me is worse because of the cyclical and cumulative effect. Surgery is a one off that you recover from and I am sure you all will but give it a good 8 weeks to feel better. And it’s an emotional experience so I found it such a help to talk to my Macmillan nurse and to friends and family. I am having 3 weeks of radiotherapy after chemo, I have been told that compared to chemo it will seem easy! Hope so.

warm wishes to everyone as we go through each cycle, I have a week of respite now until round 3 on 26/2. Sally xx

[furns85]

Jemmalou101 mine started shedding on day 15 too. Mentally I mustn’t of hit my limit with it yet as it feels less traumatic than shaving my head yet but one of my friends who went through it said similar where she felt more in control once she shaved her head. If I keep shedding at this rate the choice will be taken out of my hands anyway!

Daisy D I hope your wig fitting went well. When I had one the woman was lovely but it felt very rushed so I went to a shop this weekend and spent  a bit more time trying some on which I felt more positive about. 

Im also having chemo before surgery, I might be wrong but I have it in my head that thE chemo will be harder than the surgery (i suppose the surgery is done quicker) so I’m telling myself I’m getting the hardest bit over with first. 

xxx

[Frenchie_77]

Daisy D, I found the reality of hair loss was not nearly as bad as I was anticipating. I was very upset about the prospect of it but am now used to my wig and have even had a few comments about how good my new haircut looks!

Jemmalou your treatment plan sounds very similar to mine. I'm having my final EC today then 12 weekly doses of taxol from the beginning of March to the end of May. I can't advise as to whether the next phase will be easier but I've been told the same as you so I hope so!

Good luck and positive vibes to everyone xx

[jemmalou101]

Furns85 I am on EC and 15 days into my 1st cycle I had a massive shed (I did cold cap too) this continued for 5 days when I finally braved the shave as was getting more depressed with my hair coming out slowly in massive clumps. Shaving was emotional but once it’s gone I actually feel better, I was so stressed about my losing my hair and feels better just to admit defeat. I got my wig and wear it when I go out but I do prefer just putting hats on as the wig makes your head itchy. Defo won’t be wearing it once the summer months come in! 

I have got my 3rd and final EC on Wednesday and then 3 week break till I move onto weekly paxtol for 12 weeks, anyone ahead of me and give me some idea what to expect ?? Nurses keep saying as I have been great on EC paxtol will be a breeze but I am worried!

I know the feeling of worry I constantly ask my partner if he thinks it’s working as I wanted surgery 1st but consultant advised that having chemo before surgery was the better option. But hair coming out is a massive sign it’s working as it’s attacking the hair cells so must be working with the cancer ones too! I had a MRI last week to check on the progress and hoping it’s showing that it’s shrinking (it defo does feel softer but to me doesn’t seem like it’s gone any smaller) 

sending lots of love to everyone on this journey! Keep positive 🌈💕 Jem 

[Daisy D]

Hi Frenchie 

My next chemo is on Tuesday which will be my third one of the paclitaxel . My regime is weekly then every 3rd week its carboplatin with paclitaxel . Then the next cycle is epirubicin with cyclophosphamide . So far i havent lost any of my hair . My hair is long and quite thick . I have got appt in the morning to go for a wig fitting. Im dreading going as it feels so sureal. Im going to then have it cut shorter so i can donate it to the little princess trust so hope it does last till Wednesday for me to do this. Im struggling with the side effects of stomach cramps and sore throats as well as the chest pain due to the node and tumour pressing on the nerves.  Its just such a difficult time and i send you all my love and positive thoughts. I find it difficult as would have liked to have surgery first  but obviously the consultants know what treatment is best . Mine is triple negative grade 3 .

Im normally such a planner and i find it so  hard when i havent got a date to work towards for the operation. 

Sending you love and best wishes xxx

[furns85]

Good luck everyone too! One more week down for us all ❤️❤️
I have my second one this week, I feel like I’m entering the unknown again. I also started losing my hair this week. It feels like so much is coming out (I do have a lot of hair thankfully), it has definitely felt more traumatic than I expected. I’m hoping it’s just  a few days of losing a lot and then it’ll tail off.

Does anyone else have any experience with using the cold cap and how long the initial shedding lasted? I’m guessing it’s different depending on what ‘cocktail’ your on. I’m going to perceiver with the cold cap for now and just keep my fingers crossed  

sending everyone the best xx

[Frenchie_77]

Hi DaisyD,

I'm also having chemo prior to surgery and have the same worries about whether it's working. Gaah!! I can still feel my lump which doesn't help but I've only had 2 rounds of EC and have one more and then 12 doses of taxol.

Good luck to everyone having treatment this week or managing side effects xxx

[Shi]

Sunny ear, sending ❤️ Please do let your team know about your hands and feet even if things improve by next one, it’s very important that you do so no permanent nerve damage is caused by the chemo❤️Please keep safe ❤️I know you will 💕💕✨✨Shi xx

[Daisy D]

Thinking of you and hope that they find the source of infection soon so you can get back home to your children and start to feel better. Must be so hard for you 

Sending you lots of love and best wishes xxxx

[sunnybear]

My oncologist has reduced the dose of Taxol this week and it helped but now the joint pains are starting to come back which is weird and my fingertipsare numb which is annoying as I can't pick things up!

Does anyone else have cold feet? I am finding it really difficult to keep my feet warm even when sitting with a blanket round them!

Good luck to everyone who has chemo this week

Sunnybear

[Daisy D]

Hi 

I know what you mean about feeling depressed.  Im normally a positive kind of person but finding it so difficult at moment to cope emotionally.  My main issue is the chest and breast pain but as i reacted to all strong medications i am only able to take paracetamol and ibuprofen.  So pain limits my daily activities.  Im usually  working and doing all the normal everyday mum things . Just feel quite helpless at the moment . Im having chemo prior to surgery and just keep wondering how do i know it working ? Im trying to keep away from Google etc but just getting myself so anxious . 

Thank you for reading and i wish you all happy thoughts xx

[Sally63]

Hi that’s exactly how I was for 9 days after round 2. It made me feel very depressed. Now I feel better I almost feel hyperactive, as though I have 10 days to feel ok before I start round 3! Very weird way of life isn’t it? Knowing we have to go through this 6 times before we can feel we are really on the road to recovery and then it’s radiotherapy! Thinking of you all in this difficult world of chemo

Hugs, x

[LornaJ]

Hi, 

So I coped quite well with first two chemo cycles, this third round, I feel more nauseated and tired, I wasn't really expecting to feel like this. My session was Monday and I just want to crawl into bed today. 

Lx

[Sally63]

Hi Daisy I have not been prescribed anything but after round 2 I also experienced stomach pain and have a sore mouth. I was advised Difflan mouthwash for the soreness that I think is caused by the roof of my mouth peeling off, rapidly dividing cells that are affected by chemo like hair follicles. The Difflan does help but keep an eye on your temperature in case your sore throat is an infection.

After 10 days (today) my stomach pain and nausea have finally retreated and I actually felt like eating rather than making myself eat. I hope your stomach settles too, it’s so miserable feeling like that. But contact your chemo centre if you are worried, Im sure they will want to help. Take care x

[Daisy D]

Hi 

Im just about to start  my 3rd paclitaxel on Tuesday . I have been experiencing sore throat and stomach cramps . Has anyone been prescribed any medication for stomach cramps  ?  

Thanks 

Daisy 

[Daisy D]

Hi Sunnybear

How are you feeling today ? Sending you lots of hugs xx

[Daisy D]

Sending you all my love and thoughts and hope u start to feel better soon xx

[LornaJ]

Hi, 

A friend sent me this the other day, for those with little ones

https://www.twinhats.co.uk/collections/hair-loss-dollies-free

I have not lost my hair yet, 2 cycles in and next one on Monday with cold cap and doing every other week, the breast nurse told me to give it a go but thought as I was doing EC every other week I'd lose it so I am expecting to lose but the longer I can keep my hair I feel a bit more me. 

For those in pain don't wait to see your oncologist, ring and tell your breast nurse about anything. If there is anything more they can do to help they will, we should not suffer more than we already are. I was immediately seen when I called about my neck and shoulder pain.

Lxx

[Sally63]

Hi all, it’s a difficult journey for us all. I feel so sorry about the pain you are in Daisy, it must be so much more difficult.

My hair is so thinned now, all over my clothes and pillows etc such a cruel reminder. I decided to go for headwear rather than a wig. I am on the Filgastrim and my main issue has been bone pain which is apparently caused by bone marrow stimulation. But helped with paracetamol. I also think the dexamethasone makes me a bit depressed, I am on 8mg, have others felt like crying a lot during days 1-4?

I recognise the importance of being positive about the end result but also that this is hard going. 4 more cycles to go!

Hugs and warm thoughts to all xxx

[Daisy D]

Hi 

I totally understand what u mean about hair loss / pain. I wasnt sure either what to do about wig fitting. Its so difficult to know what to do and what to expect . Im just not sure when to expect it to fall out as im having chemo weekly not sure if means it will be quicker.  Do you have to administer filgrastim injections ? If so just wondered if u have experienced any sore throat /heartburn issues? 

Thanks 

Daisy 

[sunnybear]

Hi Daisy D

so sorry to hear you feel so bad and hope you improve soon. Pain is so enervating and makes you feel so low.

Good luck with the wig fitting, I can’t decide whether to get one or not so keep putting off the decision while I still have some hair! That’s the coward in me!

I thought the hair loss would be the worst thing but I think the pain beats it as it is unrelenting.

take Carr and best wishes for Tuesday.

Sunnybear

[Daisy D]

Hi 

Hope your pain subsides soon. Ive not been to well either but think its related to the analgesia fentanyl patches that i have been precribed for pain . Havent been able to get out of bed for last 2 days . My next chemo is on Tuesday so hope i have recovered from this by then . Ive also got appt to have wig on monday which im nervous about. Sending you lots of hugs as hair loss is such a difficult ordeal to facexx 

[sunnybear]

Hi,

my hair is also shedding and very  thin. Also terrible pain in my knees and hands and feet. I see oncologist on Monday so  will see what she says 

sunnybear

[Sally63]

Hi Furn

Glad to hear you are tolerating your first cycle quite well, it must be challenging with a small baby to care for as well as yourself.

To add to your excellent prep list I discovered some wonderful skin products by Jennifer Young that are organic and made for women with cancer, very nourishing for skin and nails. Also Faith in Nature shower gel, no chemicals. 
My hair is now shedding in handfuls so have asked my hairdresser to cut it really short. I hadn’t anticipated how sad I would feel about my hair loss. My eyes are really itchy too so I am guessing it’s lashes that will go soon 😨. At least we know we are not alone. Hope all your weeks go well xx

[Frenchie_77]

Thanks sunnybear, wishing you all the best xxx

[sunnybear]

Hi Frenchie_77
Taxol is the only chemo I have had, so I can’t comment on whether it is better tolerated although it is supposed to be kinder! I guess everyone reacts differently.

all the best, Sunnybear