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September 2021 Chemotherapy starters

amy46
Member

Re: September 2021 Chemotherapy starters

@Lu_B  Hope they sorted your nausea out now? There are loads of things they can try to get it right for you. Lollies sound good to me!

How are you feeling about your hair? I don’t hate mine just wish it wasn’t so patchy! Not been brave enough to go out without my wig yet though 😳

amy46
Member

Re: September 2021 Chemotherapy starters

I got IV steroids and then oral with the Carboplatin but only IV the Paclitaxol weeks. IV piriton each week too. Then oral anti sickness if required x

amy46
Member

Re: September 2021 Chemotherapy starters

@veestar you will be fine. It’s not as bad as you expect I actually had quite a nice time. The first session is always longer don’t worry. I had an amazing bag of goodies which was a lovely distraction. I’m not working at the moment but a lot of the time I feel pretty much normal. I don’t know if it helps but I started drinking 2.5l water a day from three days before my first chemo. I drink tea and coffee on top. My side effects have been minimal so far apart from hair loss. I also take loratidine antihistamine before my filgrastim injections. Try not to worry as it won’t be as bad as you think xx

veestar
Member

Re: September 2021 Chemotherapy starters

Hi, quick question are the steroids given orally and all the other side effect drugs for chemo? As you can tell I am a newbie!  I haven't had my chemo chat yet from the nurse even though I start on Tuesday.

Veestar.x

Lu_B
Member

Re: September 2021 Chemotherapy starters

Hi, Veestar,

I have had 2 cycles and would not work the day after. In fact, the third and fourth day only worked part time and from home. I get corticoids during chemo and sometimes feel a bit manic but always try and rest to save energy for the next days ahead when finish them and still a bit nauseous.

I am finding difficult to drink lots of water due to nausea in the first week but keep trying juices, ice lollies, any other source of water.

8th after chemo today and feel good since yesterday, working and trying to walk....Sunnis shindig and that helps....

Hair was falling rapidly yesterday and I stopped at the hairdresser and got quick fix shave !

Good luck to you all!

Luciana

veestar
Member

Re: September 2021 Chemotherapy starters

Great tips everyone . Thanks.

I have my first chemo on Tuesday . The chemo nurses said I will be there for 6 hours .. longer than I thought ..!

I have a lady coming over to give me a chemo gift bag . Has anyone else had one ? The make up workshop sounds good too .

Has anyone been to work the day after chemo out of interest? I have taken next weds off but not sure I need to?

louby_lou69
Member

Re: September 2021 Chemotherapy starters

The make up you get is amazing isn't it. I've worn more make up since my cancer diagnosis (& I got my hair cut short) than I've ever done. Chanel foundation, Bobbi Brown lipstick, Clinique moisturiser. I showed my sons girlfriend and she went through it say, this is £30, this would be £20 etc.

My first oncology appointment is a week away now. It's getting closer!!!

amy46
Member

Re: September 2021 Chemotherapy starters

I did the make up one on Monday and I’d also really recommend it! I picked up some great tips and they also send you a lovely goody bag.

How is everyone? It’s been a bit quiet in here, I hope you are all ok? Xx

louby_lou69
Member

Re: September 2021 Chemotherapy starters

Hey ladies I just thought I'd come on and mention that I did a Look Good Feel Better workshop today. It was the Wigs, headwear, brows and lashes one ( I've done the make up and nails ones) and it's in partnership with a cancer hair charity.

It was absolutely brilliant. There were 30 of us on the zoom call so a big group. One lady from the charity demonstrated how to tie scarves and use fringes and clips, she then went on to explain the different types of wigs and how to secure them properly and how to care for them, what products to use to wash them etc.

The third section was about eyelashes and eyebrows and what you can do with those. It lasted 90 minutes and was excellent. 
There is a second workshop that talks about scalp care, hair re-growth etc that I've signed up for in December when I'm a bit further down the line.

Tomorrow I'm going to our local wig salon linked to our hospital and hopefully will find a wig there. I did find one in Manchester but I can't use my NHS voucher there. 
Hope everyone is ok. 
Lou x

amy46
Member

Re: September 2021 Chemotherapy starters

I’ve also struggled a bit with the changing role. I have to keep reminding myself to let others help as it’s all they can do.

So, my update. I feel physically fine after third Paclitaxol on Thursday, but on Friday I noticed my hair was starting to come out a bit. By Saturday morning it had increased and I’d seen a really good YouTube video suggesting using a fine comb and combing through  hair with shampoo or conditioner before going for the shave. Oh my god. Literally half my hair came out. Really quite shocking. I wasn’t exactly upset more fascinated but when I came out of the shower and saw my head I really did look like a cancer patient with the bald patches. Did not like that much. Our neighbour came to cut my hair and was really lovely about it. I went grade 2 as they don’t recommend going really bald. My husband and son kept me smiling throughout and they both actually love it. I don’t hate it although I’d prefer it if it wasn’t so patchy! I do like my wig though so that’s something. Bit nervous about wearing it for the first time today. I did have a really good cry last night when the kids had gone to bed. A pretty emotional day but one more step along the road I guess and at least I know the chemo is doing something.

 

Hope  you are all ok x

aliess
Member

Re: September 2021 Chemotherapy starters

Hi Ladies 

I start chemo on the 17th with Herceptin the day before. I’ve just ordered a wig online so I’ll see when it arrives what it’s like 🤞🏻. My hairdresser works from home at the moment as she had a baby in May and she did a wig trimming course so she can alter it if needs be. It’s the colour I’m worried about as I’m a redhead so trying to get a similar colour from looking on screen is tricky. I’ve always had short hair so that’s not been a problem. 
I told close friends and family after biopsy’s were taken. And then further family once I had a firm diagnosis. I haven’t really bumped into anyone at the shops as yet, so not had any pitying faces or platitudes as yet. My friends and family have been great as has my Hubbie. I think the worse thing is the effect it has on them all, I don’t want to be a source of unhappiness for them. I’ve always been the go to in the family for problems etc, and now I struggle to cope with the changing roles. But I’ve decided to be looked after and cared for as that’s what I really need.

@amy46 good to hear you’re doing well on your chemo, gives us all hope for a smooth ride.

x

louby_lou69
Member

Re: September 2021 Chemotherapy starters

@amy46 

Ive just signed up for the walk 100 miles in October for Breast Cancer Now. Only set it up last night and woke up to over £150 in donations. My chemo won't start for a while yet so I feel able to do this. 

Maybe you could think of doing some sort of fundraiser when you're able to after treatment. 

I think I'll probably be fundraising for cancer charities for the rest of my life.

amy46
Member

Re: September 2021 Chemotherapy starters

@louby_lou69 

I have been thinking about something similar to you in terms of raising awareness. I did regular self checks in the shower but somehow still missed a 3.5 cm lump in a boob that would never be compared to Pamela Anderson’s. I think to do a proper check you need to be semi supine as I realised afterwards I had been pushing the lump out of the way. You also need to stand in front of a mirror to look and raise your arms. I’ve been toying with the idea of writing my story and getting it sent out to everyone who works in my nhs trust. We cover two large hospitals do it would reach a lot of people. I’m just not sure if I feel quite brave enough to do it at the moment. I know I should because one of my kids teachers already checked because of me and found a lump  - luckily benign but even so….

 

In other news, I had my third Paclitaxol on Thursday. Terrible nights sleep which might have been the steroid or possibly the two coffees I had at my late lunch with my husband 😂 

I feel pretty much totally fine except for the fact that my hair started to come out yesterday. I was almost relieved as I have been feeling like perhaps they forgot to put the chemo in the bag 😂😂 at least I know it’s doing something now.

Anyway after my initial relief i now feel a bit sad. I think I might see if I can get rid of it today, not sure I can cope with days of this.

I have been looking at that lovely book about the boy, the mole, the fox and the horse. I thought this quote was a good one for us ‘We have got so far to go, yes but look how far we have come’ Have a good day lovely ladies x

louby_lou69
Member

Re: September 2021 Chemotherapy starters

I've told everyone about my diagnosis. I'm a total open book. I told people the day before my surgery on Facebook what I was in hospital for and that I'd be having further treatment. I gain strength from that really plus I want people to be aware of the signs of cancer.

I thought I was immune to cancer, it something that happens to other people, not me! Obviously I was stupid to think that but if someone now checks their breasts or testicles or whatever because I've been so honest that they can see the signs that would make me so happy. 
Everyone has been amazing and I've had such support and good wishes from everyone. 

I had my hair cut short at the end of July, it was previously a bob. I've got to go and have it cut again as it's grown so fast, plus it could be a month before chemo even starts. I honestly thought that cut in July was my last for a long time. 

Lou x

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi LuB, and all the brave lasses on this thread,

Glad to hear the 2nd chemo wasn't too awful. My oncologist told me the first 4 days or so might be nasty on Docetaxol, but thought it wouldn't make me too sick! Hoping so too-there is nothing worse than throwing up, and no way I can do it discreetly! I make a dreadful noise! Just trust that the steroids and anti-nausea drugs do the trick. I am wondering when I will be able to get a wig, and maybe will find out at the pre-assessment on Monday. He said my hair will start to fall out in the 2nd week-so quite soon. Good job I nave some headwear organised!

On the subject of telling people-it is very difficult to decide. I have just worked it on a "need to know" basis up until now, as I thought it would be over and done with by Christmas! Boy, was I wrong! So close family and my aunt on Dad's side of the family and her family up North, my business clients, folk at the livery yard where I keep my pony, as I needed help with her care after surgery, and will need it again during chemo for my "off" days, my very close friends who I have known since primary school and who have been the most marvellous support network, and my next door neighbour. Of course at the top of that list my partner who has been a tower of strength, and he informed his close neighbours as clearly they would wonder why I had appeared to have moved in with him while I was recuperating from the surgery. There are a few people who don't yet know, and as chemo draws closer I wonder what to do. Cousins on Mum's side of the family do not know, a few friends I don't see and only converse with on Facebook, and also my step daughter. Thinking from that list she is the only one I may tell, as I may have to avoid visits on birthdays, Christmas etc. No way did I want my ex-husband to know! He has regular contact with my younger son, and I told Adam to keep it secret. I do not need fawning platitudes from someone I no longer respect, and my two other children despise him. It is quite a problem really, and there comes a time when people who don't know start to notice things! The lack of hair being a definite pointer! That can be disguised to an extent, but the other side effects that make us ill will maybe raise questions. I will just play it by ear!

Here's to all of us, and may we get through it without too much trauma! For the ladies with high blood pressure and issues with your ECGs, that must be even harder, an added concern that is clearly affecting your treatment. I do wish you all the best of luck with it and that they can sort these problems out for you as treatment progresses.

With big hugs to you all, Jane.xx

 

aliess
Member

Re: September 2021 Chemotherapy starters

Hope all goes well today @amy46 xx

amy46
Member

Re: September 2021 Chemotherapy starters

Hi @Lu_B 

Thanks for sharing your experience. I feel like I’m getting better at managing other people. My close friends have been amazing and I am so lucky to have a really supportive family. I’ve just had a couple of times when I was knocked off my perch by someone who I had no idea how they knew enquiring about my health. I was feeling more vulnerable at those times though - no plan for chemo start date etc. I feel much stronger mentally now although I am aware that I seem to have put all my anxiety about how I am going to move on with my life after treatment but with the constant threat of recurrence and the worry about follow up appointments etc in a box as all I seem to be able to do at the moment is use my energy to get through the chemo. 
I am also a healthcare professional. It has been both a blessing and a curse. I am not phased by hospitals or operating theatres, drugs, infusions etc. but there have been moments when consultant have been talking to me as a colleague rather than a patient and I have also had some insight into what they say that I would prefer not to have had as it massively increased my anxiety levels. 
It sounds like you are in a really good place mentally. You sound strong on your post. 
I just want to say a massive thank you to all of you ladies on here, I find it unbelievably helpful to be on this forum talking to you all about our experiences. 
Hope you all find a little something that makes you laugh today. 
Amy x

Lu_B
Member

Re: September 2021 Chemotherapy starters

Hi, everyone!

someone asked here: “How are you all managing with telling people? Are you keeping it quiet or letting everyone know? Does it upset you if random people approach you because they’ve heard it on the grapevine?”

My answer: I had my diagnosis end of May,and could not tell my family because at that point I had a brother quite ill with COVID. I also decided to keep it to closer friends initially, as trying to get your head around it whilst dealing with others is difficult. I am a health professional and sometimes people assume that because of that they can say anything and forget that I am now a patient and have feelings. Most people have been really amazing and supportive. I have a few amazing neighbours who have been great as well. I told my daughter’s(10) school teacher and anyone she is cared for and that helps.

I am still working part time and had to discuss with managers and as I interact with colleagues, I am telling them in case a miss an email. I noticed that some people keep a distance and respect that, not everyone cope the same way. 

Last week I cut my hair short and updated my profile online and then new people knew. In a week or two I will loose my hair and then it will be obvious. So... initially you can plan and then it will gradually become apparent anyways. More important for me is to keep people who really care and can support me close by.

No one has approached me out of nothing but I avoid the types who just like a gossip, I suppose.?

There is no easy way to do this. I hope as it becomes more apparent people don’t get too upset if I turn up for an event in my scarf, or looking frail. But cannot protect them all the time!

I hope you all find your way through this. The main thing is to make sure your own mind and body are strong to cope with the disease and the treatment, I suppose. 

Best, Lu_b

 

Tizzy
Member

Re: September 2021 Chemotherapy starters

Hi @louby_lou69 

Yes I found the waiting difficult. I had an additional delay of two weeks, whilst waiting for cardio to get in touch re my echocardiogram, but seeing them next week now, and the oncologist said we'd go ahead without the Trastuzumab. We can add that later if they sort heart/blood pressure issues out - I will need a lot of convincing. Anyway, I was just so relieved to start the actual chemo on Tues. At the moment I am feeling fine, and so I'm trying to just feel positive and focus on other things. A friend gave me some flower crafting kits to keep me occupied, as a change from puzzles, reading and tv. I've even done a bit of exercise today too, so feeling virtuous.

It must feel strange not going into work. I'm lucky I'm retired, and have a lovely husband who's looking after me, but I'm really missing seeing my grandchildren. After all the lock down I was planning to do so much with them and then this all kicked off in June with my lumpectomy on 2 July and although I've seen them a bit, with Covid and everything it's so hard. I just want my cuddles, with my daughter and sons-in-law too. They live so close to me, it's so frustrating. As you say, so many cancelled trips, and I'm not really sure how much socialising we can do due to the increased risk of infection. 

I'm sorry you still have a bit of a wait before your appointment, but at least you're getting prepared - it's all you can do. And then as you say, the sooner we start, the sooner we finish.

Well I better get back to flower making, I promised to send her photos of how I'm getting on!

Take care, Tizzy x

louby_lou69
Member

Re: September 2021 Chemotherapy starters

@Tizzy 

I suffer with high blood pressure too so who knows if that will affect my chemo.

At the moment I'm at home just waiting. I'm nearly 6 weeks post lumpectomy and see my oncologist for my first appointment on the 22/9. I'm a teacher and all of my colleagues went back to school last week. It's so strange not being at work. I just want to get on with the chemo because the sooner it starts the sooner it ends and I'm constantly thinking about it and building myself up to it.

I'm trying to get sorted in the house and garden plus it's keeping me busy. I've cleared out the shed, the garage, been to the charity shop twice with donations and the tip. 
I went to Manchester with my mum last week as there's a wig place that was recommended, tried on a few. I had a bob  but had it cut short at the beginning of August and I really love it short so will probably stick with it after treatment. The wig I really liked was £330!!! My NHS trust gives vouchers for wigs but unfortunately this company can't accept them so I'm going to our local wig place based in the Cancer Centre at Stoke Royal next week who assure me they have an abundance of short wigs. Hopefully I'll get sorted there. 

So it's just a waiting game. I've got a few walks, lunches and events planned over the next couple of weeks. But then who knows.

My partner and I have loads of things booked from beginning of October including theatre, gigs, seeing comedians, many of which have been moved from 2020 so goodness knows if we'll get  to go. 
Lou x

amy46
Member

Re: September 2021 Chemotherapy starters

@Lu_B  You are up early! I am finding I wake early at the moment and as soon as my brain kicks in I have to get up as no chance of more sleep. Chemo day for me today so I guess I’m a little anxious even though I know it’ll be fine.

I did a little training session yesterday with a friend who is a PT. just short and only very light weights but it felt good to be doing it again. I had to take quite a while off as two surgeries and advised to wait six weeks before lifting anything heavy.

I also spoke to my oncologist yesterday. Is anyone else having zometa? It’s a bisphosponate which strengthens bone and can reduce recurrence. Only for post menopausal women though so it’s a bit tricky for me. I’m 46 and she said I’ll probably be pushed into menopause by the chemo but if I want this drug I’ll need an injection to make sure I stay in menopause.

Ive noticed a few hairs coming out now. I also went mid length to get used to not having long hair but then bought a long wig!! Silly me because people who I haven’t told keep commenting on my new hair and next time they see me it’ll be long again 😂 I was thinking I’ll just laugh and say yes it wasn’t for me so I got extensions do you like them??!

How are you all managing with telling people? Are you keeping it quiet or letting everyone know? Does it upset you if random people approach you because they’ve heard it on the grapevine?

Hope you all find something to make you smile today xxx

Lu_B
Member

Re: September 2021 Chemotherapy starters

Hi, Veestar, I felt weird about the wig. I would  start with booking the wig appointment. Bringing my friend who is also quite good at dressing and all of that stuff helped. We had a coffee after. She took pictures to help decide. 

I am not  sure I will be using it all the time but will when needed. 

Best of luck to you and everyone here.... x

Lu_B
Member

Re: September 2021 Chemotherapy starters

Hi, Magenta59,

I had my 2nd chemo two days ago. I cut my hair last week to ‘transition’ as long full hair for 40!years. Had a wig appointment (a lovely friend by me) a week ago but not decided yet. Started organising a “head wear” Box with  scarfs, buffs, caps, etc.. for when the hair falls. It needs to be handy and have light and thick hats as live in Scotland.

Second chemo not too bad, but always aware of the first day. The anti-sickness and corticoids help a lot. 

In general, side effects not as harsh as I expected and hopefully you will be the same. 

Keep positive and let friends and family support you....

Best wishes, 

Lu_b

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi Mrsmillie, it's all very daunting-we are stepping into the unknown really as everyone reacts differently to these drugs. I am hoping the side effects are not as bad as they sound! My oncologist has used thistreatment many times and doesn't think it will make me sick. That would be really nice. being sick is just the pits! Hoping it will all be manageable and that we only feel ropy for the first week!

 

jane.x

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi Veestar,

           I haven't got a wig organised yet, but i will need one soon! hair will start to fall out in week 2 so they say! I have pre-assessment Monday, so maybe I will get offered a trip to Betty Brown's! The  wig shop is5 minutes walk from the hospital so nice and handy! I think i may just keep it for going out when I want to assume a "normal" appearance as apparently they can be hot and itchy-they recommend a fine cap underneath, and our scalps can get sore I believe when the hair loss starts. So much to deal with all at once! I have some nice pre-tied stretchy bandanas and a good stock of scarves, and during the winter wearing a hat will be totally normal! i live in beanies when it's cold so business as usual. I reckon losing eyelashes and brows will be worse. I will be getting creative with make-up. Good job that we can get all these excellent brow products these days to stop us looking a little weird!

 

Take good care of yourselves everyone.

Jane.x

amy46
Member

Re: September 2021 Chemotherapy starters

@Jojo1447 

Just lucky then! Hopefully all is September ladies will be the same. I think it’s so lovely that you are taking the time to check in on us thank you. Xx

amy46
Member

Re: September 2021 Chemotherapy starters

@Tizzy gosh that sounds a bit stressful with the high blood pressure but glad you got your treatment and that you are not feeling too bad. Long may it continue xx

amy46
Member

Re: September 2021 Chemotherapy starters

@Magenta59 

So glad you are feeling more positive. It’s always better once there is a plan in place x

amy46
Member

Re: September 2021 Chemotherapy starters

@Mrsmillie Hope it’s going ok this afternoon. I have been pretty much fine so far after week one Paclitaxol and Carboplatin and week two just Paclitaxol. In fact this last week I have felt essentially normal. It is scary but it gets easier each time you go. Xx

Tizzy
Member

Re: September 2021 Chemotherapy starters

Hi Louby_Lou69

I was due to start the same regime as you last month, but my echocardiogram caused some concern and they put my chemo back. We've decided to go ahead without the Herceptin, that can be added if the cardio team sort me out (although they don't seem to be moving as quickly as I had hoped, which is adding to my stress levels). They want to change my blood pressure tablets, but how they will know what are chemo side effects and what a blood pressure side effects? Anyway, yesterday I had my first of 6 cycles. It took longer than planned as despite feeling that I'm doing really well and have everything under control my blood pressure said different. It was so high they had to give me extra meds to bring it down before I could even start the chemo. However everyone was really nice and the rest of the actual chemo went well, So far I am feeling good, so long may it last.

I hope everyone on here is coping as well as they can and getting all the support they need.

I'm going to have a look at the 'Look good, feel better' now.

Hugs, Tizzy

Good luck eveyone

Jojo1447
Member

Re: September 2021 Chemotherapy starters

Hi Amy

To be honest i didn't change anything about my diet.  If i fancied something i had it lol never denied myself anything.

I didn't take any supplements only Vit D which my oncologist advised.

I struggled with drinks, tea and coffee tasted so aweful (metalic), so i drank lots of water and juices and had fresh smoothies.

I made sure i stayed as active as possible and went for daily walks, mind you living alone and having a 5 month old pup helped with that one.

If you need an early night have one don't feel guilty, remember the steroids will probably kick in and youll be bouncing off the walls at 2-3am perfect time to get the housework done lol...

Keep your mind active, i worked throughout, all-be-it from home but that helps take your mind off the nasties... now back in the office full time and feels like nothings changed.

Stay positive, remember this is a few months of treatment which you'll get through its amazing how strong we are, for a lifetime ahead.

Good luck to you all, if you don't mind i may jump on thread and check how you re all doing.

 

Take care ladies

 

Jo x

Mrsmillie
Member

Re: September 2021 Chemotherapy starters

Good morning everyone,

I’m going for pre assessment this afternoon, ( feeling sick with anxiety) starting paclitaxel next week for 12weeks……encouraging to read the experiences of those who have started treatment or even finished and have found it all doable! I feel like such a baby, but it’s just fear of the totally unknown I suppose ☹️
@Magenta59  so pleased to hear of your very positive consultation it does spur me on to take a more realistic, positive view of things, thank you for sharing.

Love to all going forward xx

veestar
Member

Re: September 2021 Chemotherapy starters

HI

That's such encouraging news. Lovely to read. DId you buy a wig? I am unsure of where to start with the wig thing! It feels like a minefield!

Tips?

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi C, what you say is all so true1 That we should actually be looking forward to starting such a toxic treatment justsays it all! No-one who is not going through this, or has been close to someone in this position, really gets it. The wait for my chemo has seemed endless and the stress has been dreadful. But nowwe are progressing and even though hrd times lie ahead, I am embracing it! Here we go!

Jane.x

dizzyc
Member

Re: September 2021 Chemotherapy starters

@Magenta59 

I’m so pleased to hear you’ve had such a positive conversation with your oncologist and he was able to reassure you a little. The waiting is truly hideous and any uncertainty or conflicting opinions just make it so much worse. Hopefully this is the start of some action and you’ll start to feel more in control. Isn’t it strange how we’re relieved to start chemo?! Imagine being told that a year ago..!
Much love Cx

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi Amy and everyone on this thread,

I had a sleepless night yet again as a little nervous regarding what I wanted to say to the oncologist. So a bit frail, and feeling a bit despondent. However he is a lovely man and was so understanding of all my worries. He has reassured me that with my cancer being at the stage it's at Stage 4 metastatic with a possible met in liver, the delay to treatment would not be harmful. AND even better news, I do not need the horrid liver biopsy. He feels the radiographers are quite wrong in thinking I had a liver abscess; he says they are quite rare and I would have been rather ill, and no way my bloods would have been normal! So we will be starting next week! Woohoo! Pre-assessment Monday and 1st treatment Wednesday. So I must now get organised! I will have 6 cycles of Docetaxel, in combination with a Phesgo injection. The Phesgo, and Letrozole together will continue for ever after chemo ends, hopefully keep this thing at bay.

So feel a lot more positive today, and preparing myself for Wednesday. He says the side effects may not be all that bad, but I will know soon enough!

Good luck with your treatments everyone, and hope it's not as bad as it sounds!

Jane.x

dizzyc
Member

Re: September 2021 Chemotherapy starters

Good afternoon all, what banging weather here in the UK!

I start my first round of chemo on Thursday, I’m doing FEC-T if anyone is doing the same? I rather like that it’s called FEC (one of the components is 5FU, which I love too) as it aligns well with my increasing potty mouth since my diagnosis. Anyway, I’m going to try scalp cooling but I’m very aware what a baby I am and I don’t hold out much hope for me being able to cope. It was lovely to read your post @Jojo1447 so reassuring to be reminded that there’s an end to the treatment, thank you! 
Cxx

amy46
Member

Re: September 2021 Chemotherapy starters

@Jojo1447 

Wow. That is amazing and inspiring to hear. Have you got any thoughts about why you managed to get through without side effect? Did you do anything particular with your diet? Supplements or alternative therapies? 
Thanks for taking the time to post on here to us newbies x

 

@Magenta59 how Did you get on with the oncology appointment today? X

Jojo1447
Member

Re: September 2021 Chemotherapy starters

Hi

 

I started chemo around a year ago.  I had 4 rounds of EC, 3 weekly, then 12 x weekly treatments.

 

To be fair i was fortunate and i think in general i sailed through chemo.  Didn't feel ill once but when i first started i had 1 day of fatigue.  Towards then end my bloods started dropping so i missed a couple of treatments.

I then had a lumpectomy followed by 3 weeks radiotherapy.

Good luck to you all just starting out on this road. x

HMLL
Member

Re: September 2021 Chemotherapy starters

I’ll be at Boots at 9am! X 

amy46
Member

Re: September 2021 Chemotherapy starters

Hi @HMLL 

You were up early! 
Have you tried loratidine antihistamine for your pains? There is some good evidence for it now. Can buy over counter x

HMLL
Member

Re: September 2021 Chemotherapy starters

The local wig place have got wigs donated back to them so they kindly chopped a couple up and refashioned them into Velcro in fringe pieces. I’m day 5 post 1st dose dense EC and already scalp is tingling and hair starting to shed. X 

HMLL
Member

Re: September 2021 Chemotherapy starters

Thanks @amy46 I’m doing ok. Getting rib and sternum pains from the GCSF but am grateful that relatively my chemo side effects aren’t so bad. Am going to do a Google spreadsheet for help so people can just put names down for help, walks etc… hope ur ok too x 

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi Veestar,

              if they can't give me any reassurance that it will be effective and prolong my life, I am seriously considering declining it. Why make myself ill with vile side effects if it's not going to help. I will be broaching this subject tomorrow with the oncologist. Need reassuring it will be worthwhile before I sign any consent forms. We don't even know what the liver lesion even is yet. I have to hope that everyone has got it wrong and its neither cancer OR an abscess. Got to go ahead with this biopsy to find out. Not keen on it what else can I do. I don't want to die just yet!

Take care of yourself, Jane.x

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi Amy,

              I have spoken to Macmillans just now. It was a very useful conversation and has given me the confidence to ask some difficult questions of my oncologist tomorrow. Whether I get straight answers is another matter. I am seeing the physio today at Magnolia Centre about my cording, so will check if my BCN is going to be there in the oncology appointment too. Her presence will be reassuring.

I meant to say, I had tried CBD and it made no difference. Anything is worth a try though. If I can't sleep, like last night it was after 3am before I got to sleep, I read. It's a temporary escape from this awful reality. I will also see if I can get a copy of the book you recommend. I have been trying some sleep meditations on an app on my kindle. The lady has a very soothing voice that will send me to sleep. Unfortunately she stops talking after about 20mintes and I wake up again! I could do to put her on repeat! That function, however isn't available. I find white noise like rainfall or crashing waves is soothing, but if your head is busy it's difficult to switch it off! Hopefully I will get an appointment with the cousellor at Magnolia soon. It was requested about 2 weeks ago. Trying to get into a more positive frame of mind. Roll on tomorrow and perhaps I will see know where we are heading.

Big hugs to everyone here. Jane.x

amy46
Member

Re: September 2021 Chemotherapy starters

@Magenta59 

I am so sorry Jane. The only thing I can suggest is that if you think the standard of care is unacceptable you could contact the PALS service in the hospital. Maybe see how it goes tomorrow with your oncologist first and have that as a back up. I would really recommend a book called mindfulness for health. I found it really useful in the first few weeks around my diagnosis when I was through the roof with anxiety. Xx

veestar
Member

Re: September 2021 Chemotherapy starters

hi Jane . I think you should live for the moment & decline chemo xx

veestar
Member

Re: September 2021 Chemotherapy starters

Jane , I think you should live for the moment & decline chemo xx 

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi Amy, 

Sleep is a very elusive thing these days. I am out of my head with anxiety due to my delayed chemo. The biopsy is 2 weeks away,then results need to come back before we even discuss it again. I know this much. For chemo to be effective it should be started as soon as is clinically appropriate. Ideally within 8 weeks. The benefits of chemo beyond 12 weeks are highly questionable. Thus says the NHS! I have been waiting 11 weeks already with Stage 4 metastatic cancer which could potentially be settling in and getting comfy in my lungs bones or brain,never mind my liver. It is going to be another month before anything happens,at least. Peak time for treatment will be long past and my survival chances therefore are not great. And they wonder why I am anxious! I am ringing Macmillans tomorrow for advice, before I see the oncologist again on Tuesday. I can't cope any more. I need some reassurance and not getting it from my MDT. If the chemo is now only likely to make a very small difference to my life expectancy, I may decline both it and the biopsy. Why have 18 weeks of chemo and all the evil side effects if it only gives me a few more months. I would rather spend what time I have left feeling relatively okay. Just give me the herceptin/perjeta jab and the letrozole and take it from there. I might get my life or what is left of it back to some kind of normal. This disease has just taken over! I have been pushed from one procedure to another for the past 6 weeks and they still don't know what's in my liver. Getting sick of all this now. I want some straight answers for a change. 

Hope you are doing okay with your treatment and it's not making you feel too ill. I hate to say it but I wish I was in your place and getting the chemo which might prolong my life the 3 years max I could expect. At present I feel I have a year or so. Survival depends on early chemo which has not happened. I feel I have been given a death sentence and chance of remission depends entirely on them. I have no control of anything and am losing Faith in them helping me. Speaking to Macmillans might give me some much needed reassurance and bolster me up before Tuesday. 

On top of all this my poor little rescue cat needed dental surgery and they took out 5 teeth. I realised when I came back home after 7 weeks post surgery recuperation at my partners, that he had a problem and took him down to the vet's. Poor little soul. 3 teeth just floating in his jaw. He has a tumour above his top jaw which has caused an abscess and bone necrosis! We don't know if he will survive long. Life just keeps throwing up more challenges at the moment! At least the pony is well and fingers crossed stays injury free! Can't deal with any more rehab! It's the only thing that seems to be progressing well! Getting lots of pony cuddles does me the world of good. Wish I could just stay there forever and forget all my troubles. Meeting it all head on is not working at the moment!

Take care of yourself. And all you other brave souls on this thread! It certainly is a bumpy ride!

Jane.x

 

amy46
Member

Re: September 2021 Chemotherapy starters

Hi @Magenta59 

@Just checking in. Have you slept any better? I would definitely recommend CBD oil for anxiety if you can get some. Also so you have a Penny Brohn centre at your hospital? They provide free counselling as well as acupuncture and reflexology which might help you sleep. Just a thought. Hope you have been able to spend some time with your horse. I have a dog and cuddles with her always make me feel better. Xx