December 2021 chemotherapy starters

[mousely]

Thank you for your reply.

Radiotherapy for 15 days.

 I am sorry you are also having the same problems.

Yesterday was a bad day, doctors suggested going for a walk. I got so far but then struggled to walk back home, breathless and legs like shaking jelly.

Bone pain seems a little better today. Yes the sleeping is difficult and lack of sleep makes pain worse. Doctors have prescribed stronger painkillers as they said no one gets a medal for putting up with pain.

I hope the doctors can help your bone pain too. Sending back hugs and positivity to you for the next two cycles. Yes we are 3/4 there. 

[LMH]

@mousely sending hugs and positivity. I could have written your post myself. I am also 6 out of 8 and struggling. The knee and joint pains are excruciating at night. This is completely new since the change of drugs at cycle 5. I am going to ask the onc for something stronger to get me through the nights next cycle. The sleepless nights are loooong! 

you’re nearly there and have done so well to get this far. I’ve heard that radiotherapy is much easier than chemo. 

louise x

[mousely]

Chemotherapy treatment is so full of decisions .

I am having such painful bone and muscle pain from the white blood cell production injections. Yesterday evening I was in so much leg pain and then had to give myself the fourth out of the five doses. Just seemed like I was punishing myself by more drug. Have had now 6 out of the 8 chemotherapy cycles now.

I find that I just get up thinking what am I going to feel like today. What can I do to make it easier ?

I have the fuzzy fingers and toes, I keep being asked when I turn up for the chemotherapy do I want to continue. So tempted to say no but am trying to give myself the best chance.

Have a appointment today to discuss Radiotherapy, hope that treatment will be easier. 

[Sue8822]

Yesterday my oncologist and myself agreed to stop the chemo after 4 rounds. I will have radiotherapy in a couple of weeks. Part of me is elated, as this has been awful for me, and worried about what I do now. It all feels surreal  

Sue

ps my hair is growing back!!!! 😀

[Shi]

LMH there has been a few over the years switch to abraxane from docetaxol when not tolerated, I ended up with fec again for my 6th after reaction to docetaxol on 2nd infusion. Hopefully others who were switched to abraxane will pop on and give you some 👭and tips ❤️💕💕✨✨Shi xx

[LMH]

Hi everyone,
some advice please. Just off the phone to my oncologist who has recommended I switch from docetaxal to abraxane, due to my side effects, mainly my skin peeling off my fingers and rash on face.
Now I’d love less side effects but my only concern was hope whether it would be as effective. I did ask the question and she reassured me that it was, but I kind of feel a bit in the dark. Anyone else switched? I know you need to put trust in your team but I just want to be given the most effective drug. She said that abraxane is offered when docetaxal isn’t tolerated. All advice appreciated xx

[Shi]

Sue ❤️ Remember you’ve had 4 rounds so well done you 💪 you have to keep safe and that’s what your team are doing, they’ve seen it all before and they know what your body can take ❤️ But remember you have had 4 rounds which is amazing achievement so be proud of yourself ❤️💪💕💕✨✨Shi xx

[Sue8822]

That should read reduced dose!  

[Sue8822]

Thanks @Shi du dose was discussed but I’m still so poorly that it will take time to think about all the options. 

[Pigaletto]

I second @Shi in suggesting you talk to oncologist about reduced dose or established pros/cons of ceasing depending on your circumstances. 

for everyone else, and for what it’s worth, I was sent information by friends in the US who were astonished I hadn’t been told by the NHS about fasting before and after a treatment to reduce side effects. Apparently it’s a routine recommendation. So I did 24 hours before and another 24hrs after my last treatment (just drink water) and the difference for me has been extraordinary. Barely aware of any side effects. Apparently your healthy cells go into protective mode and are less damaged, but any cancerous cells can’t and are left exposed to the chemo. 
Obviously I have to caveat this and say this is just my experience and the usual ‘it isn’t scientifically proven’ that come down range to us even though it seems common sense when you do read the research done. For me, I just wish I tried it sooner! I am definitely doing it for my last session in a couple of weeks! 

[Shi]

Sue ❤️ Has your onc mentioned reduced dose to you? Might be worth a mention so potentially giving you opportunity to have another one? Do speak to one if the nurses on here too and don’t be afraid to ask for 2nd opinion at your trust if you want one 💪 💕💕✨✨Shi xx

[Sue8822]

Thanks @LMH @I will take a look at other posts. 
sue 

[LMH]

@Sue8822 sorry you’re having such an awful time. I don’t have any advice on the number of doses either. I was reading on another monthly thread (can’t remember if it was October or January) that a couple of other ladies were stopping at 4 rounds too as they were just too poorly.  
Please try and take care of yourself and give yourself a little treat ❤️

[Winda]

Sue,

I can not answer you questions but I just gave you a warm hug.

Buy yourself something nice this week.

Find a little "Joy" through all this.

Praying for you now,

Winda

[Sue8822]

I’ve just had a call from my oncologist. He’s decided I’m too ill to have my next dose and is wanting to delay it by two weeks, he also suggested I might not want to carry on. When I asked him what the research was on this, he said four doses should be enough. Does anyone have any experience of this and what does everyone think?

[Sue8822]

I have now been floored for 2 weeks now and my eyes have started itching and are crusty. I’m not coping with this at all   They are going to have to reduce the next dose or I’m going to refuse it. I was told ‘this shouldn’t effect your quality of life’. What life I ask ? 
sue 

[LMH]

Thanks @Pigaletto for taking the time to respond. I have picked up a bit (day 11) today thankfully. I will ask for the co-codamol if the next cycle is the same. I am hoping I now get nearly 10 days of some kind of normality. 

Hope the filgrastrim was ok 👌 

Louise

[Pigaletto]

Hi @LMH,

Saw your message. From the perspective of someone who has completed FEC and one Docetaxil (Taxotere). While it was grim when the side effects and bone pain kicked in, it DID pass. I found Ibrubrofen better but after a while it wasn't touching it. I phoned in and was prescribed co-codamol to help me sleep. The next day the symptoms subsided. 

To offer encouragement, you suddenly start to feel better and hopefully will have a week of 'normal' before the next one. If your organs have struggled it will be picked up on bloods. My liver wasn't happy and rather than defer a week to let it recover they decided to reduce the dose. Fingers crossed as I do my first filgrastim tonight that I don't wake up feeling like a JCB is parked on my legs and chest! 

[Winda]

Hello Louise,

I have a extra large heating pad and a heated throw. I heat my chair in which I sit and

my bed while watching TV.

Always helps with pain.

Your carrot and lentil soup, sounds so good.

You will be much better by summer. I will pray for you now.

Winda

[LMH]

Hope everyone is doing well. I had my first round of docetaxal last Tuesday and I can honestly say it’s floored me. Joint pains, back spasms, exhaustion, constipation, diahorrea .. the works. I haven’t made it out of the house in 5 days. I would say that Storm Eunice didn’t help with that though. I was really getting into the swing of how AC was each cycle and understanding when I would feel better and make some plans. Does it ease up second cycle? Any tips for the joint pains and back spasms? I took paracetamol which did take the edge off. 

On a positive note it looks like the days are getting brighter and it will soon be spring. I have 3 squirrels living in my garden which are a fun distraction as they’re constantly playing and running around the kids trampoline 🐿 my aim for today is to make some carrot & lentil soup, third time lucky?!! Louise 

[mousely]

Hello

i am glad you are also finding that craft activity is helping you.

I find that a hot water bottle or similar helps my bone and muscle pain. 

Two more to go, you are getting there. 

[Sue8822]

I too have started my fourth cycle of chemo this week this time it’s docetaxel. Day four and my joints are in absolute agony however it’s better than feeling sick that I had with the first cycle.
I also find crochet knitting and crafting a great relief from thinking about all of this. 

Only 2 more to go!!!! 

[mousely]

Hello everyone I have just started my fourth cycle of chemotherapy on Thursday. I lost my hair about three Weeks after the first cycle. I have just a small amount left which is shaved short, I call it my Velcro hair as seems to cling to my woollen hat. I am finding I cope better when I take each day at a time.

I have been getting bone and muscle pain from the injections I give myself to stimulate the production of new white blood cells in the bone marrow. Also those mouth ulcers too.

Each cycle so far I have had different side effects, keeping a daily diary of side effects to see if I can notice any pattern to the side effects and maybe then preempt them with medication or change diet etc.

4 more treatments with a new drug in two Weeks time.

Hope everyone is learning coping strategies. My crocheting is mindful and a distraction when having negative thoughts about my treatments.

I 

[LMH]

Hello. I noticed it’s quiet on here at the moment. How is everyone getting on? I am pleased the days are getting brighter as it’s much nicer to get out for a walk when the weather is good. 
I am heading into a new drug cycle next week of Docetaxal/ phesgo. I was hoping that this combo were less harsh on hair loss but my BC nurse has said that it is pretty much the same. I was hanging on to the last threads of hair following AC (I cold capped throughout but still lost 90%) so recommended I start to shave it to stimulate some new growth post chemo. 
Been reading some interesting research on tumeric so going to find a way to add to my diet - or maybe just tumeric tea - worth a go! 
Louise xx

[mousely]

Hello Winda

I too have had to find that courage from somewhere. I have found take each day at a time. Talk to friends about how you feel. My first chemotherapy treatment I was in such a panic attack but when there the staff were so reassuring. I still get the high blood pressure problems with just being in the hospital setting. On cycle three of eight and slowly giving myself the chance of getting this cancer out of my body.

Finding mindfulness from crocheting and the pleasure of little crochet gifts to other chemotherapy patients, who are very willing to give a home to one of my crochet animals.

[Winda]

Hello Scarlet,

 I am Winda. I am Anastrozole for 1st line treatment for BC I am Er+ PR+ Her 2 - 

that has spread badly to my lymph nodes.

I am waiting to feel up for what you went through as I have issues such as white coat syndrome and HIGH anxiety.

I  was wondering how has it been going for you?

In order to save myself, I have to find courage.

Thank you for your time:)

[firefly66]

Thank you sue 

tbh although it sounds dramatic and it’s been a bit scary, it has all been bearable so far and not as bad as I expected, I’m sure it won’t always be the case but 
we are all on a journey that’s going to be filled with highs and lows and hopefully we will get through it and look back in wonder at how strong we are and think “we did it!” 

[Sue8822]

@firefly66  I’m so sorry this has happened to you it sounds like a nightmare. I hope the next round is better for you. 

love and hugs 

sue

[firefly66]

Hi sue

mine started a few days ago and i know how you feel, its totally devastating even though you know its going to happen, im so sorry x

[firefly66]

Good afternoon

Hope everyone is well and safe......

i was diagnosed with a 3 cm lump in my left breast in august, stage one grade 3 

I was advised that i should have chemotherapy before surgery but unfortunately i have a blood clotting disorder called Factor V Leiden and after meeting with the oncologist it was decided that due to the risk of blood clots i should have the surgery first.

I had a left wide local excision plus sentinel lymph node biopsy and a bilateral mammoplasty (breast reduction of both breasts) in October.  The results came back that the breast was clear but there was cancer in one of the lymph nodes (six had been removed)

I started ECT chemotherapy on the 14th December.  6 cycles over 18 weeks to be followed by radiotherapy and then hormone tablets.

I nodded off during the treatment and woke with a burning sensation in my nose and my head was throbbing, i was informed this was due to it flushing through to quickly.  It all seemed pretty uneventful but i felt tired and had a nap when i got home.

The first 3 days following chemo seemed to be great energy levels wise and i could have quite easily forgotten there was anything wrong apart from the heartburn which was swiftly followed by constipation....

Day 5 i began to feel very whoozy headed and felt like i had a hangover but i still managed to walk the dog and do things around the house.  

Day 7 and i had the most excruciating pain in my lower right arm in the vein where the chemo had gone through and the vein had a hard part of about an inch.   The next evening the pain began to get worse and it felt like i  had been hit with a burning hammer and the pain was terrible.  I ended up being admitted to hospital and following an ultrasound it was confirmed i had a blood clot in my arm.

Following blood tests in hospital i was told i was neutropenic and my neutrofil count was 0.13 which accounted for the whoozy head etc   The whoozy head and hangover feeling continued and by day 10 it was all i could do to walk from one room to another and doing that required a lay down on the sofa, tbh that was the worst day and by day 13 i felt back to normal (if you can ever call me that!) and this has continued.  I am now on day 16 and feeling great 

I have now been put on apixaban twice a day for the remainder of my treatment which is an anticoagulant and the oncologist is now deciding how to administer my next treatment which is on the 4 Jan.  The logical plan would be to put a PIC line in but as i am prone to clots and the risk is already high having chemo they are now deciding how this can be done with minimal risk 

So that is my story so far, sorry its so war and peace!!   Hopefully things will be less eventful next week, fingers crossed xx

[Sue8822]

Well today I noticed my hair falling out! I knew it would happen but it’s still a devastating day.  I haven’t stopped crying 😭 

[nannagel]

Hi glad to hear that your first session wasn't too bad, I have my first one next week and it's put my mind at rest. I will be having 3 x EC and 3 x D and I'm hoping it won't be as bad as expected. I think the fear of the unknown is worse than the treatment which has been the case for me so far.

Good luck with the rest of your treatment 🙂

[Edster]

It was so good to read your post so thank you for sharing. I am just starting the very same journey and hope my experience mirrors yours. So far I have woken up with nausea after my first session yesterday so other than being tired I feel I can cope with that. I do feel somewhat apprehensive about the EC but am not focusing on that far ahead yet. 

It's really helpful to know you could pretty much carry on as normal. I luckily have a break from work with university closure now until the new year but want to keep going as long as possible before taking sick leave. 

I just don't know how I should manage covid and Christmas. Is wearing a mask or maybe even a visor appropriate so I can go out and about as normal?? Or should I be shielding? My clinical team have simply  said to 'be sensible' but don't know how to translate that into simple rules for myself and my husband and teenagers. How are you managing covid with the new omicron variant rising? Xx

[Sue8822]

Well I’ve been feeling really rough over the last week. Had my chemo on the 7th and by Friday I was very poorly. Nauseous, hot and cold flush’s, my head is so incredibly itchy & today I have a mouth full of ulcers and a cold sore and I still feel rubbish. Not looking forward to doing it another 5 times!!

how are you all getting along?

[mousely]

Thank you everyone for your replies. I will remember that this is a way of beating this cancer. As I found out I had cancer last January and have met several unexpected problems along the way I need to see it as progress in my recovery.

I feel reassured that this group of people understand and are coping with the treatment, this means a lot to me and that you have replied to help and support me.

Thank you everyone.

I will get my husband to shave my head and wear my head covering ( I wear a hat when out as have nerve pain in my face from the cancer jaw surgery so no one will be surprised).

[louby_lou69]

Hi ladies.

Just thought I'd come over and say hello. I had my first chemo on the 1st October.So far I've had 3 EC and 1 paclitaxel with a Herceptin injection, I have a further 8 Paclitaxel to go. The EC were interesting as I had different side effects with each and the second one seemed harder than the third. I keep a note book to hand and write down how I'm feeling, what medication I've taken etc which is helpful.

I didn't start losing my hair until after my first EC. I'd had it cut quite short in the summer but eventually decided to brave the shave a week before my second chemo. My head started to feel sore (like you've got a really tight ponytail in) so  my partner and son gave me a #4 all over. It felt immediately better.

It's now 9 weeks since I shaved my head and I barely have any hair left. I have no choice in the matter so am just getting on with it. My hair will grow back. I wear turbans in the house and have a wig that I wear when I go out.

Chemo is hard, some days you feel absolutely awful, other days you feel good and can go for a walk, meet friends etc. I've found there are more good days than bad.  

Good luck and take care 

Lou x

[Sue8822]

hi Mousley, lots of decisions coming all of them have to be yours and when you feel it’s right for you 

I shaved my hair off the weekend before Chemo started as I had family visiting and had a lot of support around me, it took me a good week to be able to look in the mirror and I’m still not used to it and I know there is the rest to fall out but it’s a minor inconvenience when it’s saving your life, that’s my opinion anyway.
 good luck with what you decide, it’ll be right whatever because it’s your decision. 

[Beagle.bum]

Hi, I had my first EC infusion 8 days ago. I’m on 3 weekly cycles. The infusion went ok, nurses were lovely. Have had a few days of nausea but managed well by meds. The overwhelming tiredness has been an issue but I think I’m coming through that now. Daily injections haven’t been too bad so far. Good luck everybody, we can do this together x

[mousely]

Thank you for the reply. I hope that I will not feel to bad. I need to remember that this is to help me beat this cancer and will be what I have been working towards from January this year..

[mousely]

I now have a date to start Chemotherapy which is the 30th December. I am having a PICC line fitted on the 28th.

Admit I am not sure what to think about it all. Hope that this will be discussed.

Will get the ginger biscuits in. I will lose my hair but not sure when people just shave it off , I suppose that It is my decision.

At least I have progress with treatment.

[Scarlet Austin]

Hi Mousely,

Just wanted to try and offer you some reassurance. I had my first chem 8 days ago (EC) and honestly I think you just need to remember that everyone reacts differently.

For me, the actual infusion was fine. I felt quite nauseous that evening and for the days following it but it wasn't anything near as horrific as I had heard.

It took a few days for the aches, pains and tiredness to kick in but I am now starting to feel back to normal again before my second cycle next week.

It is such a daunting time but the human body is amazing and will cope with it in amazing ways.

Talk to your nurses, take all the medication they offer and listen to your body. Nobody claims that this will be easy but you can get through this.

Follow the advice of others on this thread (drink loads, get fresh air etc) and most of all be kind to yourself.

I wish you lots of luck for your first treatment. You can do this.

x

[Sue8822]

Best of luck xx

[ritap]

Hi All

I start Chemo on the 20th December 

going through lots of health checks at the moment, but feeling very anxious.,

thank you all for sharing your feelings thoughts and tips..

it’s comforting to know there is someone out there to share the journey with

take care xx

[amy46]

Hi, I’m just jumping on your thread to give you a few words of encouragement. I started chemo end of august. 12 cycles Paclitaxol with three weekly Carboplatin then four cycles two weekly EC. Got two to go. I didn’t have many side effects during the first 12 weeks, bit grotty for a few days after the Carboplatin but fine with the Paclitaxol. I carried on running although I slowed down quite a lot and walked a lot with the dog. I met friends most days for a coffee or lunch somewhere outside. Apart from not going to work I pretty much carried on as normal. I had up days and down days of course. Sometimes my fear of recurrence was overwhelming, but even then I got through the day and started to feel better again. EC has been harder for me, and I’ve finally had to admit that I need to slow down and rest more. But three weeks today is my last one so the light is at the end of a tunnel that at the beginning felt like i would be in forever. I  just wanted to tell you ladies my story because when my oncologist said to me ‘some ladies sail through chemo’ it had a really positive effect on my mindset. I thought ‘ok, I’ll be one of those ladies then’ 

It’s hard, but you can do it, particularly if you support each other on this thread. I ended up joining the May group as there were some runners on there that I found really inspirational. Every lady on there has supported me and offered kind and inspiring words when I have felt down. 
I hope this post helps in some small way xx

[Sue8822]

Well my first infusion went well. I was dead sacred but the nurses were so kind.
I had some reflexology to relax me and then was given a really thoughtful goodie bag from a local charity, called BooBs, containing all sorts of wonderful things like a hot water bottle, a blanket, a hat, toothbrushes, mouthwash, lip balm, creams, puzzle game books, ginger sweets, ginger tea and other things too numerous to mention, it was such a  generous act of kindness and it made me feel cared for.

I haven’t had many after effects, I felt very nauseous that night And the following day but as yet no major side-effects.

Hope everyone else has had a easier time of it as well, love and hugs 

sue

[boffj]

Hi I start chemo next week, hopefully I won’t have a reaction like I did a couple of weeks ago, I was supposed to have weekly chemo but they had to stop it after 4 minutes, I’m now starting on abraxane every 3 weeks, is anyone on this, I want to know what side effects are do I loose my hair etc xx

[Sue8822]

Hi all. I’m starting on Tuesday 7th. Beyond nervous. I braved the shave last weekend when I had family support, I hate it, but will get used to it. 
good luck all and thanks for the tips. 
sue 

[mousely]

Thank you for your message Pigaletto

I am starting on what the sheet said is EC

As I have previously had bone cancer of my lower jaw 40 years ago !

mouth care will need to be considered. I have had a dental appointment and all teeth fine.

Having had blood clots I have been told I will have to give myself daily injections too.

I will have to just take a day at a time.

The exercise note was interesting .

[Pigaletto]

Hello @mousely and other Dec starters. 

I’m jumping in from previous starter thread on this occasion because my first was on 24th Nov. 

I was beyond anxious before my first chemo but can honestly say the reality really was ok. You are given anti sickness pills for up to 5 days and as everyone will tell you - just take everything they give you!  Yes, you may feel groggy or have side effects but they should Be mild. Think feeling fluey but without the snot! 

It is also important to take up tips and this is what this forum is for. 

first up: it helps to stare which regime you are on (eg I am on the FEC-T cocktail). And note that where others talk about side effects they may be specific to what they are taking. 

Definitely do the ‘Look Good Feel Good’ charity online sessions. Such simple measures like painting your nails dark from early on (stops UV reacting with drugs through the nail) will make a huge difference. 

other useful ones: obviously check with your chemo nurse as I did, but I took two paracetamol an hour before my first chemo apt. It meant the cold cap to reduce hair loss and cannula was a total breeze. 

second tip: cold cap works best for those with thick hair. Those who have thin hair may want to just take control and brave the shave. Buy bamboo cap in dark colour (eg black) and while our thread agree they scream cancer, you can then put a bobble or beret over the top and being winter no one would know. 

Third tip: Do what you can to look after your gut health. If you can afford it or someone who is offering you help can, get Symprove or similar. Or just a probiotic yoghurt. 
also make yourself go for a walk every day-it makes the world of difference to your mentality. Walking/cycling etc and all moderate exercise will help flush the drugs through, along with water. You’ll find you want to drink a lot anyway but minimum 2 litres a day. If your taste goes weird then mineral is better than tap. 

finally look after your teeth. Request a dental check before you start chemo - they should fit you in. Clean mouth after every meal and any sign of an ulcer - use no-alcohol mouthwash like Cortisol or just salted water. 

On that note I wish you all the best. Once you are up and running you’ll have the measure of it and be ok. And there’s an army of support when you need it here. Xx