January 2020 Chemo Starters

[jemmalou101]

Am so sorry to hear so many of you are having plans changed (tweaked) it must be such a stressful time, and possibly the worst time for us to be receiving chemo. Am normally a really positive person, even after being diagnosed but even I have struggled the last week. Think it’s a build up of anxiety and the fear has set in that am a vulnerable person. I wish people would just listen to the goverment advice, the sooner people stay in the sooner we’ll all be allowed back out! 

I got my priority pass through from Asda and have set up free weekly deliveries from next Saturday so least I don’t need to send hubby out for shopping anymore which is a relief! If you’ve not applied go onto link below and register they then pass your details to the local supermarkets. 

https://www.gov.uk/coronavirus-extremely-vulnerable

I feeling quite lucky at the moment, oncologist is happy for my treatment to continue as planned with my final 8 before surgery (taxol, herceptin and  Pertuzumab) so fingers crossed it all goes to plan. Also great that chemo is having a good effect on BC and no longer need a mastectomy (thank god as seen lots of women have had the reconstruction part cancelled and don’t know how I would cope) just got to see if my surgery goes as planned for end of June. 🤞🏼🤞🏼 

keep strong and safe ladies  Jem 🌈🌈🌈

[LornaJ]

Hi all,

I am on a younger group for breast cancer on Facebook too and there are a lot of posts on there about treatment cut short, changing treatment to begin with mastectomy then radiotherapy then chemo, and even delays to treatment. And it's not just breast cancer it's a cross the board. It's a scary time to be having treatment. I think that they are doing it in a case by case basis. I'm lucky that my treatment is continuing and only because I was able to go private with my work.

So I'm back in today for treatment number 7. Shocked how much hair was still hanging onto my head until today. So now I'm all emotional, but at least it got this far.

Keep safe xx

Lx

[MartinaG]

Hi All,

So glad to hear everyone is doing ok and side effects are easing, long may it continue!

I met my oncologist last week and she confirmed they are stopping my chemo, just too high risk in the current climate. I am starting hormone treatment next week and radiotherapy in next few weeks hopefully. Being totally honest, despite the horrendous side effects last time, I am gutted. I completely understand why and it is the safest option now but if four chemo sessions will now suffice, why was I originally prescribed six. I feel I am being shortchanged and possibly at the expense of my health. I can only hope this change now doesn’t mean I pay dearly for it down the line. 

Apologies for such negativity, I’ve been so positive this entire journey but it’s hard not to question things at the minute, and much harder to see the bigger picture when we are all living under this black cloud of corona. But none of us are strangers to battles and this one will be no exception, we’ll beat it one day at a time. Please look after yourselves and stay safe x

[Daisy D]

Hi Sally 

So pleased to hear that you are recovering well and are able to enjoy your garden too.

I missed two of my weekly treatments due to low white blood cells  and although i was disappointed not to have the chemo i suppose its our bodys way of  needing to recover to carry on with this harsh treatment. 

Im experiencing some neuropathy in my left heel and right hand . It is intermittent but i not if they will also reduce my dose to try to combat this. 

I wish you a speedy recovery and keep safe in this time.

Big Hug

Daisy xxx

[Sally63]

Hi everyone

A quick update to say that I am recovering well at home from the neutropenic sepsis, even able to use my exercise bike in the garden, lovely to feel fresh air and sunshine. My treatment has definitely been postponed by 1 week and the dose reduced to 75%. I was assured by the breast care nurse that this doesn’t alter the efficacy of Docetaxel in relation to the cancer and that I will notice a big difference in side effects. This is relief as despite feeling better now I could not bear to go through it all again! Do be aware that this can happen to anyone on chemo, do watch out for aches, high temperature, sore throat, extreme fatigue etc. and talk to someone if you do.

wishing you all well and enjoy the warm weather in your homes and gardens,

stay safe, Sally x

[furns85]

Thanks jemmalou101, that makes me feel a bit calmer going into Thursday. 

Did anyone watch bbc news at 6pm tonight (Tuesday)? There was a piece from george aligarh whose had cancer on and off for a number of years and he’s just recovered from corona virus which I thought was a positive story for them to share in all this doom and gloom. He also said once you’ve had cancer you basically have a tougher mentally with these things so go George! Hopefully we all avoid it but if not we can face it head on!

xx

[Sally63]

Hi Sunnybear

Anyone in active chemotherapy is classed as extremely vulnerable because of compromised immunity. I have registered because although my partner is helping me if he fell ill I might need additional help. If you are on your own the registration means you can ask for help from local volunteers with shopping, pharmacy etc. I have had a text and a letter from NHS telling me I fall into this category and it is a strongly advised message about staying indoors for 12 weeks with a small concession of going into the garden if you have one for some fresh air but no talking with neighbours over the fence! It’s Draconian but will shield us from picking up the virus. It’s going to be so hard if you have young children, I really hope those of you who have also have supportive partners and family who can help to entertain the children 

[jemmalou101]

Hi furns85 am currently on paxitaxol round 4 of 12 due this Wednesday (weekly) and has really minimal side effects. Before I was on EC (3 x every 3 weeks) and really struggled with major fatigue but that’s vanished and I have been great on taxol. Only current symptoms is dry skin (hands and arms) and nose bleeds.

I spoke to my oncologist and she’s happy for me to continue for the time being as she said taxol doesn’t tent to suppress the immune as much as other types of chemo. I have 8 more after Wednesday and just want to see the back of chemo! Its also very worrying as I work in the hospital where I get my treatment and found out that 2 receptionist have tested positive for covid so dreading going in to get PICC and treatment. I avoid everyone, eating honey and vitamins by the bucketloads to try help my immune. 

it’s horrendous being house bound, even more so keeping my boys in (we aren’t even going out for walks or bike rides) luckily we have a garden with lots to entertain them with. It’s killing me as we are normally such a active family and always out and about even with going through chemo and we are all climbing the walls! 

stay safe all, I found if you log on Asda around 7.30am you should get a shopping slot (I have one for 7th April and 14th April) so hubby only went out today for our shop and hopefully he can now stay at home. Xxx

[furns85]

Hi everyone 

it sounds like some of you are having a tough time on Docetaxel, it’s awful when we feel that crappy. Although I’ve not found it easy it sounds like I’ve been lucky. I wonder if having nothing to compare it to makes a difference as I haven’t had any other yet. I think I’ve said this before so sorry if I sound like a broken record but I’ve found drinking lots of water made a huge difference to how I felt in the first 5 day’s. I didn’t drink much on the second and I felt a lot rougher.

im worried about the virus thing too, honestly what a crazy world! I ended up with one of the government letters mid week which took me by surprise as I thought it was just for those who have blood or lung cancers too. I asked the chemo nurse when I went for my PICC clean and she said they’d rolled it out to anyone currently doing chemo or recently finished? But it doesn’t sound like we’ve all had one? I have registered on the gov website so hopefully I can access the priority slots at some point. 

The prospect of being housebound for 12 weeks sounds unbearable, I know it’s selfish but I’m secretly hoping everyone gets told to stay in longer ( as long as that doesn’t extend our 12wks). And like others I’m really hoping treatments and ops don’t get delayed. 

im still having my half way scan tomorrow and speaking to the oncologist Thursday.

I have a feeling she’s going to change my cocktail and put me on paxitaxol- has anyone been on this?? I really don’t want to change and I’m worried the side effects will be worse too.

hoping we all stay safe and well in this crazy world xx

[sunnybear]

Hi Ladies,

I hope you are all as well as can be expected. I have had 11/12 Taxol and my treatment has now been stopped, the oncologist said I had had enough and she is concerned about the neuropathy. My nails are going balck and falling out and my fingers and toes are numb.

I still need the Herceptin and am not sure how or where they will be given yet but the next one is not due for 2 weeks so hopefully that will become clear.

It is a difficult time and like others, I am worried about the virus, going to hospitals and my treatment.

Has anyone else registered as a vunerable person? At first I thought the guidelines covered people with lung or blood cancers but have recently seen something that implies all cancer patients having chemo! Luckily I haven't been shopping anyway but not sure how long I can last.

Take care all and keep safe, Sunnybear

[Sally63]

Dear Martina and everyone

your experience sounds almost identical to mine except we received different advice, perhaps I should have been at home too, but I was insistently advised I had to be in hospital for the IV antibiotics. And I still don’t have confirmation about my next treatment one way or the other. 
Good news is though that today I feel much better! I ate a hot cross bun with butter and actually enjoyed it, hooray 😀 

So for others waiting for Docetaxel , it’s harsh, kills everything in its path, makes you feel awful but after about 12-14 days it starts to feel better. Doing it all again x 2 feels daunting but my oncologist is going to reduce the dose so might not be so bad next time, certainly can’t afford neutropenic sepsis again! This couldn’t be a more challenging time to be having chemo, but the support on the forum and friends and family will help us through, we will get there. I think of the phrase from the children’s book We’re Going on a Bear Hunt, “we can’t go over it, we can’t go under it, we have to go through it” and we will.

love to all, Sally

[MartinaG]

Hi All!

I just found this group today and the timing couldn’t be better. Glad to find others going through this at the same stage as me. I had my 4th chemo on 19th and my first dose of Docetaxel...what an introduction! I had the usual symptoms on my first 3 rounds of FEC fatigue, nausea, sore mouth but got through it ok and did feel I got off lightly.

Well the Docetaxel sure made up for it! I had four days of some pain and a lot more fatigue than the FEC but woke up on the 4th night completely burning. Managed to get my temp to come down eventually but spent the next 5 days in bed with sweats, severe pain and zero energy. I did ring the helpline on the 5th day and they told me to stay at home, keep taking paracetamol and liquids and contact them if I got worse. They are very apprehensive about taking high-risk patients into hospital because of present circumstances. My temp hasn’t went above since but I’m still taking the paracetamol just incase (I’m checking my temp before I take the paracetamol) I started coming around better yesterday but it really did scare me, especially with corona at the minute you can’t be too careful. Sally I’m so sorry you had to go through that it sounds awful and very scary, thank goodness you are home and safe now.

Sadly my last two chemos have been cancelled but they are bringing my radiotherapy forward instead, less chance of infection. I’m now at the stage I’m almost scared to go to the hospital for the radiotherapy. It’s a crazy world for everyone right now. Stay safe everyone x

[Sally63]

Hello Jill, good you have joined the forum it is such a great support. I’m sorry you are going through this alone but pleased there are friends to support you. The side effects really are difficult and it does sound like you might have thrush (candidiasis) it’s a yeast so won’t be killed by salt water you need a pharmacy product, but check with your breast care nurse before you try anything just in case it’s something else. We have a lot to put up with. 
I have been told my next dose of Docetaxel will be reduced and likely postponed by a week to allow my bloods and body to recover. That’s not confirmed yet and I don’t know yet if they are making wider decisions to postpone treatment, it’s a huge worry for us but I do think we will all be informed pretty urgently on the plans as cancer patients were being given priority in one of Boris’s briefings. I think I understood that patients receiving treatment might have to go to their nearest cancer centre rather than a local hospital, at least in London but probably everywhere to free up hospital space. I expect we will soon know.

Take care everyone and keep your shield up!! X

[LB]

Hi All I haven't been on here for a long while but you are all the position that I was in this time last year.  To those of you who have a horrible taste in your mouth - I know water tastes awful.  I found tic tacs helped me.  You have to be careful because there are some foods that will never taste the same again after your chemo and tic tacs are something that you won't mind if you can never bear them near you again.  Be aware that you can get thrush - orally and down below so ask your unit if they can give you some Canestan or other thrush cream and some Fluconazole if you get it orally. Watch out for red sore hands too - you can become photosensitive to the sunshine.  Your unit will be able to prescribe creams for this. This time last year I was in hospital with neutropenic sepsis too so be aware of your temperature and how you feel.  On the very best note I finished my chemo in June and within a fairly short time I felt that the side effects were a lot less. Good luck to you all LB

[Joliver]

Hi all

I am so glad to find this group. Sally, sorry to hear you were so ill, that must have been awful for you but great you are improving.

I have had 2 x chemo out of 6, and have a telephone appt with my consultant next week to establish my treatment plan going forwards. I am terrified about the prospects of a delay, as well as  going into hospital for chemo, or having side effects so bad I need to be hospitalised amidst covid-19, although Sally your comments about your care from the NHS are heartening. 

I live by myself and am on day 10 of self isolation. I have a great support network around me, and my partner and friends have been popping round and sitting outside to chat, and hopefully my son will come to stay in a couple of weeks. I have felt distressed at times though especially dealing with various chemo side effects, and can't believe the poor luck for us all having breast cancer at this terrible time. 

Sorry this is long but I also wanted to ask whether anyone has any top tips about skin breakdown. I have a raw patch of skin on my labia and have been having salt baths 2 x a day. At first I sprinkled in the salt but have now been told it should be several handfuls. I have had 3 baths and there is no improvement - if anything it feels slightly worse. I have antiobiotics in case of infection. Any other thoughts?

Jill x

[LornaJ]

Hi Sally, 

So sorry to hear you ended up in hospital, but glad you are on the road to recovery.  Will they delay your treatment now? I've seen a lot of treatments being delayed and stopped early on a case by case basis.

Lx

[Sally63]

Dear Daisy and everyone

thank you for the kind messages over the week. My update is that I was admitted to hospital on Tuesday night with the dreaded neutropenic sepsis. I have been very unwell but treated with excellent care by the NHS at a time when the staff are under such pressure. My safety was their priority whilst with them. So I had massive doses of intravenous antibiotics, fluids and Fligastrim injections, tons of blood samples taken, neutrophils fell to 0.5 which is very low. I felt horrible, hardly able to move and no appetite at all. Constant anxiety about my cancer treatment and risk of Covid19 whilst in hospital was on all our minds. I was in a different hospital to my cancer centre but consultants were in communication and my breast care nurse texted me daily. Yesterday my blood parameters improved, I felt a bit brighter in myself and they decided it would be safer for me to isolate at home (which I have been since 23/3 anyway). I was relieved to get home last evening to my own room. It has been horrible and frightening to go through but the reason for the detail is to reassure you that the NHS is prepared for chemo patients with neutropenia, they know what they are doing and they look after you. If you feel unwell and get a high temperature (mine was 38C) don’t hesitate to contact Chemo alert number and get to your nearest AE hospital. 
I was more ill than I had realised and this experience showed me how quickly things can creep up but also how rapidly medical staff respond and treatment put in place. I am now home with antibiotic tablets, fatigued but much better than I was. Thank you  NHS and to all the women going through their BC journey supporting each other 👋👋❤️
Take care everyone and hope you can enjoy your shielding over the weekend with some positive activity and family time.

Sally x

[Daisy D]

Hi Sally

How are you feeling today.? Im on a combination of paclitaxel and every 3rd week paclitaxel and carboplatin.  I find that my joints do ache. I take paracetamol and  find fenbid gel which is 10% ibuprofen  ( you can get this from gp Its stronger than the ibuprofen that u can buy over the counter). I also find heat pads help. My daughter had made me some heat pads using rice and odd socks ! ( which work well as they fit round better than ones u can buy. I get pain in my shoulders so the sock can wrap round easily) There was some people on this forum who say loratidine helps . 

Totally understand where u are coming from. It makes you feel so low.  Pineapple is what everyone suggests to try and ironbru was also recommended by my chemo unit but personally i didnt like the taste.  Hope you are able to keep drinking as much as u can manage. I used to love coffee cant stand it now. Hopefully the symptoms will pass and we will get through all these horrible times soon .

Sending you a big hug and keep safe 

Love Daisy xxx

[helsbels20]

Hi Sally

I really hope you are feeling better this morning. I’m sorry I can’t offer any advice on the side effects as I’m not on that drug.  I now always have a slightly metallic taste in my mouth but hate pineapple so am not sure which is worse! 🤣 Thinking of you today and all the other ladies worrying about the virus and the effect it could have on our treatment. 😘 💪 

[Sally63]

Hello again, I hope you have had some Mother’s Day enjoyment!

saw my two on Skype, we have to adjust to this new world.

I am feeling pretty low tonight though due to the Docetaxel effects. I can’t taste anything properly, even water is disgusting and my body aches and aches. I am dreading another night of this, how long can I expect it to go on?

I feel a bit pathetic but it’s just really affecting me 😨

[Daisy D]

Hi Sally

How are you feeling today ? 

Love Daisy 

[Sally63]

Hi Furns and everyone

its such a comfort to have the forum especially now when the uncertainty of Covid19 coincides with our chemo and all the side effects and complications. I have stayed in bed all day today as feeling so achey and unwell but pretty sure it’s the Docetaxel as no fever or cough. The taste thing is horrible, I can’t find any comfort in food yet so pleased to hear it might improve in a few days! Just about managed granola this morning very slowly. 

It feels like such a double whammy for us all, I would love to be in the garden or working on my lap top, keeping my family going and connected but not up to it today. Thoughts are with you all as we travel through this together, xxx

[furns85]

Hi ladies

it is crazy times! I’m due to see the oncologist and I think that’s being changed to over the phone. I’m just hoping I can still have the scan beforehand. 

ive done 3 x 3 weekly doxatacel now and the taste thing is a bummer but I seem to almost get back to normal after a week. I find brushing my teeth with biotene and corsadly mouthwash helps, particularly for the first 5 days and chewing gum. Warm, blander food and sweet stuff seems better (sticky toffee pudding and custard is still lovely!)

im glad the weather is getting better so at least I can get out in the garden and still go for a walk.

fingers crossed this craziness doesn’t effect our treatment plans.

love to you all xx

[helsbels20]

Hi Drida and ladies

Its really good to hear from you all as I don't think anyone else can appreciate how difficult this time is for us all. I've had 4 rounds of EC and am now waiting to start weekly Taxol for 12 weeks.  I'm due to start a week on Tuesday and was told business as usual but in the current situation that's still a long way off. As soon as I hear anything I'll let you know.  I go from worrying about a pause in my treatment to worrying about getting the virus! From what I've read they will try to keep cancer treatments going but it is also possible to pause treatments for a few weeks.  I know how frustrating it is because all I've been focusing on is getting through each stage of treatment and the thought of it taking even longer is one I'm trying not to think about.  Anyway not much I can do about it so am keep positive 😊  and watching lots of box sets! 

xx

[Drida]

Good morning ladies and I hope we are all fine. I am due to start my first cycle of T chemotherapy, after completing 4 AC. My chemotherapy is booked on 03/04 at St Bartlomews hospital. I am

just really worried and concern that due to the pandemic could cause any further cancellations. I asked the nurses today whilst I was changing the dressing from my picline and according to them

they do not have any further information. Anyone is scared about that? What are your thoughts? 
I still have long to go as I have more 4 T, after double

mastectomy and radiotherapy. I would appreciate your thoughts. Keep safe everyone.

m 

[Daisy D]

Hi Jem 

Im on a similar regime to you. Im on paclitaxel for 12 weeks but every 3rd week get carboplatin too.  Then im to start on EC for 4 cycles every 2 weeks.

I have had some side effects such as constipation and diarrhoea.  Taken movicol / prune juices etc to help constipation but lately i have found weetabix with banana and rasberries help. I have experienced a sore throat /cough which was intermittent . Had chest xray but no infection . Ive have had filgrastim injections when i have the paclitaxel and carboplatin. I find these do tend to make my joints painful and also feel fatigued very easy which i find frustrating  as im usually very busy .The main issue i have had is with constant burping which is painful across my chest and breast

 I have tried lansoprazole Gaviscon peppermint oil /tea . Elevating my bed . Nothing seems to be working at the moment . I am currently awaiting a call back from Gp to discuss. 

I still have quite a lot of my hair left at the moment but its now very thin but have also got a wig which i wear when i go out . Previously had long hair now my head is cold. 

How did u find the EC treatment. ? 

If i can help in any way with how its been so far for me please just ask. 

Take Care

Daisy xx

[Sally63]

Hi Cat I really feel for you having to cope with this with children to care for and no child care, it’s hard enough as it is. I feel strangely fortunate that my kids are old enough to look after me if they were here, but both keeping their distance and connecting by WhatsApp and I think that’s the right thing for now.

Helpful to know your chemo nurse advice, mine have said almost nothing but my husband said the NHS are going to give further advice to cancer patients so perhaps we will soon know more.

My Docetaxel started kicking in this afternoon, loss of taste and appetite, generalised ache like flu, very tired and tearful. Just taken paracetamol to try and get some sleep. Feels miserable tonight but I think it’s the combination of everything on top of chemo!

hope you don’t get the same effects, we must try to stay positive and get through all this chemo so we can support our families with the other stuff. I hope you can find gentle things to do with your children,

take care and love, Sally x

[Catd2504]

Hey Sally63,

Feeling very similar to you with worries about catching corona and the effects on treatments etc. My chemo nurse said to me on Wednesday that chemo can be delayed by 2-3 weeks sometimes as might happen routinely I guess if bloods aren’t what they need to be before next treatment🤷🏻‍♀️ I’ve heard nhs will be contacting all high risk vulnerable patients next week with further advice - not sure how accurate that is though??

Finding it hard to work out what to do for best as now got my 6 and 2 year olds at home all the time and usual grandparent childcare options are in isolation also as over 70’s!! Hubby still going to work but trying to massively socially distance, limited working from home options and obviously money and income is a massive issue! It’s so difficult isn’t it!

I also had first Docetaxel on Wednesday so waiting for symptoms.  So far ok just a little acid reflux feeling but bracing for the what might come in the next few days as told symptoms may take a few days to come out. But yay, like you also 4 down and 2 to go!!,

Take care and hoping you have an easier ride with Docetaxel🤞🏻 Xxx

[Sally63]

Hi everyone

I had my first Docetaxel treatment yesterday so 4 down, 2 to go!

I am basically self isolating now. I have moved into the spare bedroom which Is sad, and have stayed here today, working from laptop and resting. My husband can be at home too as his work says he is caring for me. My worry remains that although I am being treated at a leading cancer centre no one has advised me what would happen if I did contract the virus. I assume delay of treatment but for how long? And what is the tipping point when the chemo becomes less efficacious? Would we have to start again? I don’t think I could bear it I have been so awful wit EC, though so far Docetaxel seems a bit better. Less nauseous but taste change rapid, told to expect joint pain in next day or two and probably nosebleeds and diarrhoea but let’s see! 
Main thing is that we all take great care in our isolation and keep well. Thinking of you all and knowing this must be especially hard with young children and school closure. Exercise at home, reading, games, connecting with others through technology and postponing family events are all part of our new normal. 
Happy Virtual Mother's Day!  
With love and thoughts, Sally

😊💐🌷❤️ xx

[LornaJ]

Hi, 

Yeah I am now a nursery teacher haha, I started out so well on Monday but felt exhausted by Wednesday! I got all stressed what I was going to do with them stuck in the house and not sleeping well. Hubby wfh but not the biggest help as a 3 and 1 year old just want mummy when she's in the house. My walks have dropped off to zero as walking with a 1and 3 year old is snail pace! I feel so much more unhealthier as the boys including hubby don't want soups and salads my usual lunches. It's really hard as well getting fresh food!! 

[jemmalou101]

I decided today to keep my boys off school from today. They are shutting Friday, but we are all well and I just don’t want to risk one of them catching a cough and temp and it delays my weekly treatment by 2 weeks which is such a big space in time.

So we are self isolating (and I am currently a KS1 and KS2 teacher 😩) and we are just taking dog on early walks and sending hubby to shops (being on chemo doesn’t seem too bad considering I don’t have to brave the shops!!)

I have had to miss my brothers 30th celebrations this weekend, and also Mother’s Day celebrations with family but just keep telling myself it’s only temporary and we can celebrate at the end of the year. 

Everyone stay safe, just be extra careful.

My plastic surgeon and chemo nurses both advised me and family to self isolate between my weekly chemo and they scared me (think I wasn’t taking it serious enough tbh) even my husband is working from home because am high risk, luckily with his job he can so will still be getting paid. It’s such uncertain times xxx

[helsbels20]

Hi

i agree it’s all getting a bit scary! Having been on the sofa for most of the morning they are saying chemo patients are high risk so I think I’ll just lie low at home and avoid going out as much as possible! I know we still have to function so maybe just a bit more hand washing for everyone in the family and a few less visitors but keep up with any appointments as the doctors and nurses will give the best advice. As if we didn’t have enough to deal with! Keep positive everyone and stay safe! 
xx

[Sally63]

Hi Lorna, I have been thinking a lot about Coronavirus. Apparently children as less likely to catch it than adults. I am distancing myself as much as possible eg it’s my daughters baby shower this weekend, I am not going, sadly, but it is sensible. I work from home. I am not using public transport. But what I would like to know is what would happen about our treatment if we became ill with the virus? Could it continue and where? I am seeing my oncologist this coming Monday and intend to ask him what protocols are in place for cancer patients. Has anyone been given any information  about this? 
Look after yourselves everyone and hope you keep well xxx

[LornaJ]

Hi, 

How is everyone thinking about Corona virus? I'm slightly worried, the kids still heading to nursery and think if anyone's going to catch it it's them!

I didn't sleep well last night with the aches.

Lxx

[jemmalou101]

Awww Lorna, that must have been a tough decision to take the cap off, but keeping your hair is not as important as your health and if it was making you sick you definitely made the right decision. Four and a half hours is a long time to sit with the cold cap on, don’t think I could have done that! As quick as the hair comes out it will grow back (fingers crossed a lot healthier too) 

I am expecting the fatigue to stay into this round too, will have to try and get some paracetamol in for the aches and pains. 

Any reduction is good at this stage, shows that it’s working and you are only half way through. Hopefully this intense couple of rounds will reduce it, keep positive xxx

[LornaJ]

Hi Jemmalou, and others, 

So apparently when you're on accelerated taxol you have 3 hours of the stuff compared to 1 hour, the cold cap should be on for four and a half hours plus and I had to give up at 2 and a half as it made me sick. So I'll be braving the shave. Anyway otherwise so much better so far than EC, I was really tired and went to bed early but no nausea except from the cold cap so far.

The consultant has said I will get more aches and pains and probably a lot looser in the bowel department.

Lastly mri results in and EC showing a reduction in the cancer, not as much as id like but a good start. Unfortunately it is more noticeable in my mammory glands, but hopefully the radiation can finish that off.

Lxx

[jemmalou101]

Good luck for today LornaJ , definitely keep me posted on how your feeling and fingers crossed the sickness eases for you, it just shocked me looking at the side effect list as my nurses have all said taxol should be a breeze after EC and I coped really well on EC.

My hair didn’t last into the 1st round of EC even with cold capping so hair loss isn’t really a issue for me plus I got my eyebrows microbladded before I started chemo but like you I have noticed this weekend that my eyelashes are defo thinning and not as long as they used to be but don’t seem to be losing it from my legs thou 😂 they still need shaving! 

Sending you lots of positive vibes for this next round of treatment. 🌈✨ jem xx

[LornaJ]

Hi jemmalou, 

Yay with your journey, I'm starting taxol today so I'll let you know how it goes. I'm on accelerated so bizarrely doing every two weeks for 4sessions, so maybe a bigger dose!

Do you have your black nail vanish, I'm painting my nails this morning!  I'm told the nausea is much better than with EC and that was my biggest issue.

Noticed my eye lashes have started to go and looks like the taxol is worse for hair loss. 

Lxx

[jemmalou101]

Hi ladies .... So i am now finished with EC (🎉🎉) and moving onto paclitaxel (Taxol) this Wednesday for weekly treatment for 12 weeks and just wanting to know if anyone had had this type of chemo yet and did you experience any major side effects.

Looking at the information my oncologist gave me the list of side effects seem a lot more than when I was on EC , and I was lucky on EC as I didn’t suffer any major side effects, just fatigue and couple of stomach issues. 

Any tips would be appreciated for this next step of my journey. Jem xxx

[Catd2504]

Thanks so much everyone for your advice and experiences.  I’m feeling a lot more rational today and gonna go for the chop but as some of you suggested maybe a less drastic one.

Thank you all so much for helping me see things a lot clearer! Xx

[Sally63]

Hi Catd and everyone I am sorry about your hair, it’s one more thing isn’t it? Personally I decided against cold capping and lost most of my hair after 1st cycle of EC, now had 3rd and have complete hair loss, just using headwear rather than wig. But the emotional impact of hair coming out in handfuls is really significant, nothing quite prepared me for how I would feel. There is a lovely charity called cancer hair help.org that I actually visited and the women there were so kind and helpful with different types of headwear. I love the chant ‘hair grows back’! This is a pause in our lives and when we press the play button again hair will grow back.

love to all for the weekend x

[furns85]

I’m in a similar situation too. I’m doing cold capping, had thick hair and I have got a bald patch at the back of my head (at least I can’t see it!). Although it’s thin, from the front you can’t tell and I can clip my hair back to cover most of the bald spot. I do wish I hadn’t cut it as short though (just under my chin)- if I get another bald spot I’m stuck!!

I use a wig if I’m going out and about and spent some time finding one that matches pretty well to my hair so it blends with the hair you can see at the front.

If you’re finding cold capping ok maybe it’s worth persevering? I know what you mean by getting fed up of finding hair everywhere constantly, I did nearly hit my limit and cut it off but I’m glad I didn’t now it’s calmed down (for now). 

why do these drugs have to take our hair!! It seems so cruel when we have enough to deal with!! Grrrrr!!

[helsbels20]

Hi catd

i also had very thick long hair and losing it was my main worry - ridiculous I know, but it just meant everyone would know.  I have cold capped and my hair has thinned massively but no bald patches yet. I had my hair bobbed to chin length and I wear a thick stretch hair band so actually no one knows apart from me how thin it is underneath. It also pushes all the hair together so it still looks quite thick. I still have one EC to go so will probably thin a little more but it has stopped shedding for now. I have a good wig but I just find it too hot.  Perhaps just get some of the length taken off and then experiment with some hair bands etc. Whatever you decide to do just remember you are half way to growing hair again! One place I went to also said I could just get a clip on hair piece to cover the thinning on top which they cut so it blends in with your own hair. Hope that helps and have a lovely restful weekend everyone. 💕😘

[jemmalou101]

Catd2504 I completely feel your pain, my hair didn’t even last into the 1st cycle and was coming out by the bucketful after 15 days even with cold capping, I braved the shave on day 20 and I got my 3 boys involved and they helped to cut it and then shave it with the help of their dad and I think it helped them being apart of it (as well as me!) they know it’s mummy’s strong medicine that is making my hair come out , and that the medicine is working and making mummy better plus it will grow back once it stops. Like you I had thick hair and pains me to say it was in the best condition ever when I got diagnosed so losing my hair was a big deal for me. 

I was on 3 x EC (every 4 weeks) and am now moving onto taxol for 12 weeks. Have to admit the perks of only being in hospital for just over a hour for my chemo is pretty nice, but it’s a decision only you can make and it’s such a tough decision, but like you it was effecting me more emotionally having hair and finding clumps and I couldn’t even turn my head with out it coming out and being covered in hair. Mine is completely gone now, but only 12 weeks left.... and my motto keeping me going is that hair grows!! 

do you have a wig?? I wear my wig when am on school run or out and about. Funny when I 1st got it , couple of days after shaving my 3yo jumper around singing “your hairs grown back “ he laughed when I took it off to show him it was mummy’s pretend hair but my 7yo has been great so am sure your 6yo will be too!! Xxx jem 🌈✨

[LornaJ]

Hi, 

I am sort of in the same boat, it's thinning but I don't have any bald spots yet. now I spoke with a friend who also did cold capping and she said she did get a few bald spots, she actually used smaller scarves and hair clip ons to hide them, as wigs were too hot. She has passed the hair pieces to me and they are quite amazing.  I cut my hair pre  chemo but to a length you can cover bald spots with other pieces of your hair so it was in the best condition prior to starting.

although it's thinning you still have hair so that's great.  So I wouldn't pixie crop if you can carry on cold capping and can hide the bald spots and comfortable doing so. I think it is very emotional for us and our children. My boys love my hair and when I cropped it Joshua asked me if I was still his mum.

Lxx

[Catd2504]

Hey all! Hope everyone is getting on ok and finding ways of dealing with the various effects.

I really need some hair advice.  I have pretty long straight hair and have had 3xFEC cycles so far moving onto 3x Docetaxel next.  I’ve been cold capping but have been losing more and more hair.  Now to anyone else you wouldn’t tell cos my hair was pretty thick to start with but I cant even touch it without more coming away.  So it’s pretty much tied up all day every day and only washing it once a week to minimise loss.

It’s really started to affect me emotionally now.  I’ve been trying to keep it as my 6 year old is really anxious about me losing my hair and I think if it wasn’t for him I might not have cold capped at all.  
I was thinking maybe if I cut it into a short pixie crop that might be better to transition my son to short/no hair or do I just go all out and shave? What have others done?? I’m sorry I don’t really know what I’m asking! Just having a really bad day emotionally. 

[Daisy D]

Hi Sally and Everyone 

I know what u mean regarding emotional impact . I feel it just comes over me in waves and i just keep counting down the chemo sessions.

Im currently on paclitaxel and every 3rd week carboplatin too which apart from some side effects such as  intermittent stomach cramps  /joint pain It has been managable so far.

Im due to start EC on the next regime in i believe April time . How did u find the EC. Im due to have a scan in April to check on progress.

Sending love to you all

Daisy xx

[Sally63]

Dear all thank you for your supportive replies . It’s strange how even water tastes wrong isn’t it? Ribena does seem better, especially warm. I think the emotional impact is bigger than I expected, but it’s a huge help knowing we are not alone in all this. I will start Docetaxel on my next cycle, I don’t know what to expect but imagine it might be different to EC. Sending warm thoughts to everyone for the rest of this week, xx

[LornaJ]

Hi, 

Yes talk to your team they can certainly help with more nausea meds, I found eating made me feel better and fresh fruit and smoothies were a winner there as the sweeter stuff tastes better. I drink lemon and honey hot water as water was hard going and and added Ribena with the water I drank with meals as that makes sure you get vitamin c, from Ribena, the added sweetness just helps with the bitterness and might aid eating at the same time.

It's okay to rest and relax chemo is hard on the body. 

Lorna 

[helsbels20]

Hi Sally hope you’re feeling better today - I was exactly the same last week. I was very emotional and just felt general rubbish but I did pick up again by day 8.  I still have the metallic taste in my mouth which has lasted longer than normal. Do you have more ECs to go? I have one more before changing. Hopefully your side effects won’t be as bad on different drugs.  🤞 today is a better day 

x