September 2021 Chemotherapy starters

[Magenta59]

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]

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]

@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]

@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]

@Magenta59 

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

[amy46]

@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]

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]

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]

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]

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]

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]

@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]

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]

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]

@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]

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]

I’ll be at Boots at 9am! X 

[amy46]

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]

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]

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]

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]

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]

@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]

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

[veestar]

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

[Magenta59]

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]

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

[amy46]

Hi @HMLL 

@how are you feeling? I keep thinking about you and how you are coping with two little ones. Mine are 11 and 13 so much less hard work physically. We’re you ok after your injection? Good that you have lots of support. I am trying really hard to accept offers of help. It’s usually the other way round so it feels quite alien. My friends have made a rota to drive me to chemo and some have batch cooked things to go in the freezer for the family.
Hope you are ok x 

[amy46]

Also a quick one as just getting my daughter ready for a school camp.

I got a fringe from here:

https://www.banburypostiche.co.uk/?gclid=EAIaIQobChMIrubulILl8gIVztPtCh15NAC0EAAYASAAEgK5ePD_BwE

they sew real hair onto a very soft band x

[amy46]

Quick reply for now - do you have any loratidine antihistamines? Take one a couple of hours before your injection. Some good evidence it helps with bone pain etc x

[Mrsmillie]

Thanks for your reply Amy, I am still 50/50 as to whether to give it a go, but for all the reasons you mentioned I’m wondering whether it’s worth the extra time and discomfort……I have really thick hair and it’s already starting to shed more than usual due to the stress of last few months!!

HMLL….can I ask you where did you get fringe pieces from? Glad to hear you have some help with your children from sis in law and friends, to take some of the pressure away from you. Hopefully side effects from injection with be minimal for you, keeping everything crossed!

Hugs to all x

[HMLL]

@amy46  Thanks for checking in. First 24 hours just felt like the worlds worst hangover. Background nausea like early pregnancy, headache that wouldn’t shift and brain fog. Went for a moderate paced 5km walk and felt better for it.

My LO are 5 & 3 I’m a single parent but am lucky my s-in-law is staying first few days of each cycle and have good friends to support me. 

Didn’t cold cap either, I’m embracing the hair loss and have a wig and a couple of fringe pieces for beanies. The thought of spending any more time in the day unit was enough to put me off and also the headaches. 

Have just injected the GCSF so now anxious about the side effects of that and also as not feeling so bad is the worst yet to come? I did the fast mimicking diet for 4 days before chemo so am hoping maybe I’ve mitigated the side effects but the uncertainty isn’t fun. 

How’s everyone else doing?

[amy46]

@HMLL 

How are you feeling? Hope the first 24 hours were ok for you. How old are your little ones? Sorry if You have already said and I missed this before. 

I felt pretty normal yesterday. I did quite a lot and am wondering if I overdid it. So hard to know! Trial and error I guess. 
Hope everyone is managing to find something nice and happy somewhere in their lives this weekend x

[amy46]

hi @Mrsmillie 

i decided  not to try the cold cap. I was already 90% certain  before I saw my oncologist but she said i was welcome to try it but with EC it was unlikely to work for me. My reasons were these: I have really thick hair and I didn’t want thin hair

i like to exercise and I didn’t like the idea of only washing my hair a couple of times a week

i wanted to reduce any extra anxiety- will it work ? Is it working? Is my hair coming out? When will it come out? How much?

I wanted my experience in the hospital to be as pleasant as possible - this week they gave me a heated pad and a blanket abd I snuggled down for a sleep whilst I had the Paclitaxol infusion

i wanted to minimise my time in the hospital 

I think it’s different for everyone though and I know of people who used it successfully 

I have got an amazing wig and although I’m really anxious about the big shave next week at least I feel like I’m taking control x

[HMLL]

1st day of Epirubicin and Cyclophosphamide yesterday afternoon. From the time of cannula to leaving was only 90mins. Feel like my tongue is like cotton wool but tingling and my head is like the worst hangover. No clarity of thought, slightly dazed. No nausea, not feeling hypomanic from the steroids either. All in all not shocking but the dread of what will hit at 24hrs post is making me feel anxious. Off for a walk with a friend to get some daylight and air, kids off with my lovely sis in law. Hope everyone’s doing ok x 

[Mrsmillie]

Amy…..Great to hear second round of treatment went well yesterday. Can I ask have you tried cold cap?

Best wishes to all xx

[amy46]

Hi all, 

Quick update from me, had my second Paclitaxol today. All went fine. No steroids or aprepitent for me this week as apparently the Paclitaxol alone isn’t likely to make me feel sick. Much quicker today. In and out 3.5 hours.

Main worry is some odd little stabbing pains in fingers but my oncologist said too early for neuropathy so maybe me being a bit paranoid! Xx

[veestar]

Hi . I feel exactly the same . . It’s lovely to chat on this thread to know we all can support each other 

[amy46]

@Magenta59 I am so sorry you are having such a horrendous time. None of this is easy even when it is more straightforward so I can’t begin to imagine how awful it is for you. I won’t offer platitudes. Just know that I am thinking of you and understand in some small way what you are going through. Xxx

[Magenta59]

Hi Amy,

still no date for the biospy. Why there is no sense of urgency when you are dealing with someone with metastatic cancer, I don't know. They would not want to be in my place for sure! Spoke to BCN yesterday about all my worries. Theyare going to chase it up! Had ECG today, and yet more blood taken for pre-biopsy clotting tests. I am told to still attend the 3 scheduled pre-assessment appointments so that we are up and running when the biospy results come back. I reckon this will set me back a month! Waiting for the biopsy itself, then another week for the result; plus I am informed I will have to do nothing strenuous fro 2-3 days, and it will take a fortnight to heal! Unbelievable! I am fed up of being an invalid and if I feel up to doing something I will. Within reason Of course. I am not sitting around wasting another 2 weeks of my life doing nothing! Spending time with my horse is the only thing that gives me a break from all this! The discomfort from the cording and scar tissue never lets you forget for one moment what is happening to you!

Having awful trouble sleeping due to the whole rotten situation. All they say is "can your GP help with that?" I DO NOT want sleeping pills! The cause of the insomnia is the lack of progress with my treatment! Get on with it and I will be a whole lot less anxious! When I got the dates through 2 weeks ago, I was able to relax knowing it was about to start and was sleeping much better; now I am back where I was. Can they not see this? It's purgatory waiting for them to decide what they are going to do. In the meantime all the stress takes it's toll, mentally and physically. My head is in a whirl and I feel exhausted. Where does it end. Can't see me getting back to work in the New Year as planned-at this rate the new financial year is more likely. Self-employed and business on hold for another 6 months-that willbe 9 in total. Think I will be bankrupt before long=help from DWP is minimal, not to say unreliable. Still on the assessment rate after 2 months on ESA. I should be receiving more money by now, but clearly they don't like to rush anything through, despite the fact cancer patients should be fast-tracked. I depair!

Anyway, rant over. It all stinks!

Do take care and hope it continues to be manageable for you.

Jane.x

[Magenta59]

That's great news re your histology, and you seem to be recovering well from your surgery. So glad you don't need ANC-that is where all my problems have arisen! Seroma for weeks and now tethering and massive cording, despite doing the exercises religiously! It's so uncomfortable and pain shoots down to my elbow when I stretch! Seeing a physio Monday-hope they can help. This and the delay to my chemo is getting me down!

Take care now. Onwards with the treatment!

Jane.x

[Dogslover]

Glad you are feeling well, Amy. I start tomorrow with ec chemo. I am going to shave my hair on Saturday, I feel I have come to terms with it now. I know it needs to come off. My sister will do it or me. I'm hoping to send it to the little princess trust. 

[Dogslover]

I am sorry to hear that. Hope your daughter isn't to poorly with it. Bless herx

[gillieb]

Hi Amy

thanks for your reply. Change of plans for me, one of the kids tested positive for COVID so everything put back a couple of weeks.

Hope everyone goes along ok with treatments, I will check in to see how everyone’s doing.

[louby_lou69]

Finally got my results today. Grade 2 tumour 35mm with a tiny 4mm hanger on. Clear margins and all 3 lymph nodes clear! 😊 Scar is looking good. I have good movement in my arm & shoulder.

Oncologist appointment on the 22/9 so I may not start my chemo until October. I'm having EC and PIX but not sure how many, as oncologist will confirm. Also having Herceptin alongside as I'm ER and HER2 +.

Dreading it but also want to get on with it and then it will be over quicker. The surgeons have been amazing. I'm so grateful to them all 

Lou x

[amy46]

@Magenta59  how are you doing? Keep thinking about you and hoping you are ok. Did you hear anything today about your biopsy? Xx

[amy46]

Hi @gillieb  

Wishing you lots of luck for this week. I think you’ll feel better once you get started. Everyone was so lovely to me at my first session x

@Lu_B  glad you are able to enjoy things still. The pancakes sound yummy 😋 

I have been pretty good today. It’s all relative and I definitely don’t feel my usual full of energy well self but I have to keep reminding myself I was am lucky to be as I am and not yet feeling sick or anything else. I’m sticking with my 2.5litres water and I had some acupuncture today too. My wig arrived so now I just have to decide when to bite the bullet and have my hair shaved 😳 Bit nervous about this to be honest. Kind of feels like it’s the nail on the coffin in terms of actually accepting that this is happening to me. Hope you are all ok xx

[Lu_B]

Hi there, I think the best way is to cross bridges as they appear on your way....enjoy the rest ignore the summer whilst you can. I even went swimming with especial suit and a “knitted knocker” before Chemo and gave myself trips to nice spots. My friends have been kind and hand around when they can. The Chemo phase is a new challenge, so enjoy the time after recovery from surgery. Had a lovely pancake breakfast out with family before first cycle as well. 

Lost of love, 

Lu_b

[gillieb]

Hi all

I am having my chemo talk tomorrow, bloods on Wednesday, Picc line Thursday and 1st chemo Friday. Feels surreal. I have recovered well from mastectomy and feel like I have been sitting waiting for dates as the summer has passed by. I feel life is on hold and at the moment, can’t see beyond now.

x

[Shi]

❤️Hang onto each other 👭 snd step by step you will get each other through with love understanding kindness snd 🤣 through the 😳 wobbled the 😢 where am I, remember look deep into your eyes when you look in the mirror, you are still there and still you always remember that ❤️it will try and take your joy, don’t let it ❤️ focus on the bell that you can ring the heck out of if your units have one. I told that bell each treatment I’d be ringing it soon, was something to focus on. At the trust I was at when the bell got rung everyone having treatments clapped and celebrated with them ❤️💕💕✨✨Shi xx