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August 2020: starting chemo.

243 REPLIES 243
Sparkle123
Member

Re: August 2020: starting chemo.

@nickik I had the Pfizer jab last week, about three weeks after finishing chemotherapy. I had a tender/sore arm around the injection site with slight redness for 4 or 5 days. No other side effects. I’d wait as long as you can to have it but get it before your surgery. Good luck!

Maire
Member

Re: August 2020: starting chemo.

Great news Rempen regarding your progress. 
I had my mastectomy in June with no reconstruction (too complicated due to previous radiotherapy). I felt the tightness you describe for months. It takes a long time for the swelling and scarring g to settle down. My scar is now less tight but very lumpy and with no sensation in my oxter. Best to expect recovery to take several months in terms of sensation. 
wishing you the best possible news at your next consultation.

renpen
Member

Re: August 2020: starting chemo.

Hi

just checking in as I haven’t been on for a while. I had my single mastectomy with auxiliary node clearance and implant on 25 Jan. Initially I was really pleasantly surprised by the lack of severe pain but I’m starting to get frustrated after 2 weeks. I feel like I constantly have a really tight bra on ( actually I do, I have to wear it 24/7 for 6 weeks) and at the same time like I don’t have enough support so I find myself cupping the implant to hold it in place, like you feel if you do aerobics in a rubbish bra! But overall not too bad, I’ve been able to get out for a short walk every day 😀

I'm expecting my pathology results on Weds. The old demons are back whispering 'what if...... what if'. Desperately trying to put it out of my mind and know that what will be, will be but It would be so amazing to hear it was clear, or at least that I only need the HP treatment and nothing more sinister.

After this week’s results they are going to start planning the radiation. I need to have the implant fully inflated first although it is already a fair size. The wound looks good and overall I’m pleased I went for it. Fingers crossed that the RT won’t frazzle it!

I had my Covid jab in Jan. Pfizer with zero side effects 😊 The hospital said it must be at least 2 weeks before/ after surgery.

nickik
Member

Re: August 2020: starting chemo.

Thanks both for your replies and I hope you finish your treatment soon Sarah and both continue on with good recoveries xx

SarahT20
Member

Re: August 2020: starting chemo.

Hi Nickik,

I had the Pfizer vaccine last Monday. I'm actually still on weekly chemo but I checked with my BCN and they said it was fine to have - ideally just before the next cycle. I guess side effects vary from person to person - I felt awful the afternoon I had it - I basically spent the afternoon in bed with flu symptoms. Thankfully it passed by early evening and I've been fine ever since, but I would def be prepared with paracetamol and have no plans for the day just in case you're unlucky like me!

 

Sarah xx

Maire
Member

Re: August 2020: starting chemo.

Nicik,

I had the Pfizer vaccine in late December absolutely no side effects apart from a sore arm for 24 hours. It was 2 months after my last chemo. I had it because of the workplace I was returning to. I’ve had an e mail from my GP inviting me for my vaccine in February as a shielder. (I won’t be getting that any more obvs) so that seems to be the timescale (in Scotland) for that category. The vaccine isn’t live but you do want your immune system to be triggered. Probably best to phone your oncologist. They will have the best up to date advice. I contacted my oncologist prior to my vaccine and she said it was fine to get it.

Good luck with the mastectomy. Hope you get a date soon. It’s probably a good idea to have had the vaccine before your surgery.

Well done on getting through chemo too x

nickik
Member

Re: August 2020: starting chemo.

Hi all just checking in as I haven't for a while...I have finished my chemotherapy 2 treatments early due to adverse side effects ( fingers and toes numbness amongst other stuff). Its now 2 weeks and I still have no energy!

I have surgery for a double masectomy in a few weeks time, not booked a date as yet.

Just wondering what everyone is doing about having the vaccine? My bcn suggested that I build up my immune system a bit first as I have felt so terrible towards the end of chemo.

 

Has anyone had any side effects from the vaccine at all?

I just don't want to leave it too long xx

Maire
Member

Re: August 2020: starting chemo.

First day back at work flew in Sparkle.

We have a case of Covid where I work but most likely at non infectious stage. Thankfully I’ve had first vaccine but it is still a concern.

Ive been building up my stamina over the last three months but I was pretty tired last night.

Painting a fence today, weather permitting, then a late shift at work again.

Eager to embrace life on the other side!📞🖨💻

 

Sparkle123
Member

Re: August 2020: starting chemo.

I hope going back to work wasn’t too hard Maire! I always found it took a while to get back into a routine after any extended time off.

 

I am starting radio next week. All tattooed up ready for it. My fingers still aren’t back to normal yet but they are gradually improving still. It feels like some of the hair that had started to grow back has fallen out again since my last chemotherapy too. I really hope that’s the last and now it can just start growing again. 

I hope everyone else is doing OK!

Amy1988
Member

Re: August 2020: starting chemo.

Hi everyone. Good to hear from some of you again! I hope you're all doing good. I had my surgery 4th January and radiotherapy will hopefully be sometime in February. It seems to be going so quick now. Apparently my tumour weighed 16lb but had responded to chemo, I can't imagine the size it was originally! I feel like I'm fully over chemo now but I have been warned that I might have to have more later. I speak to my oncologist next week, who can hopefully tell me more

SarahT20
Member

Re: August 2020: starting chemo.

Glad to hear everyone is feeling better after making it over the chemo finish line. For my part, I've got three weeks of paclitaxel left, and then a surgery (not sure which yet - trying to mentally prepare for a mastectomy but it's hard not to hope for a lumpectomy instead!) and radiotherapy after that. Seems like the chemo has gone on for ever but I've had it relatively easy in terms of side effects so feel lucky for that at least! 

Hope everyone is keeping well xx

Maire
Member

Re: August 2020: starting chemo.

Well done sparkles. Another past the finishing line. I’ve been out walking most days since chemo finished and my stamina is returning. I start back at work on 25th January. Quite scary in these Covidy times. Hope the radiotherapy goes well. Be kind to yourself.

Sparkle123
Member

Re: August 2020: starting chemo.

I’m so happy I’ve finished chemo. It hasn’t been without issues but at least they’re all in the past now. 

I am hoping that the slight peripheral neuropathy isn’t permanent but I just need to give it a bit longer I think. It’s not painful just annoying. My nails and hair will take longer to recover I think! Everyone is saying radiotherapy is easier, you just get tired.

 

Radiotherapy will start next month I think, I’m still waiting for a start date. 

m_bee_w
Member

Re: August 2020: starting chemo.

Hello all. Just dropping by to check how everyone is getting on.

I feel very fortunate to have finished chemo just before Christmas. It took a few weeks to recover but I'm finally starting to feel like my pre-diagnosis self. 

I started radiotherapy a few days ago and it's going well so far. My last one will be on the 28th. I've been taking Tamoxifen since the new year and aside from hot flushes I've not noticed any other side effects yet. 

Hope you're all okay. 

Maire
Member

Re: August 2020: starting chemo.

Good luck Sparkles. It’ll be a relief to have it over.

Amy1988
Member

Re: August 2020: starting chemo.

Hi sparkle123. Sorry to hear you had your chemo delayed, that must have been frustrating. How have you found it? Mine finished 26th November and I feel quite well now. Good luck for next week, no more chemo is a nice thought!

Sparkle123
Member

Re: August 2020: starting chemo.

Just chipping in as I’ve not finished chemotherapy yet. I “should” have done, but had two sessions each delayed by a week (different reasons). But my last one is booked for next week now, then it’ll be on to radiotherapy. 

I mostly lurk here as I am rubbish at replying!

Amy1988
Member

Re: August 2020: starting chemo.

Renpen 

I had some treatment 2 weeks ago, apparently it's an antibody that I was having alongside with my chemo. I don't think it's the herceptin but I get so confused with all the treatments lol. But goods new, apart from my stomach being a bit dodgy, I've had no other side effects. Do you really think the implant would be lopsided? I'm considering all the reconstruction options but I want one that looks nearly the same as my other breast. It's such a big decision! I'm glad you had a nice Christmas and didn't have to cook. Hopefully your taste will return soon, but mine did take a while. The problem is, I'm eating everything that I've missed lol. I hope they can clear all our cancer in surgery. Apart from reconstruction, I don't think I could face another op. I haven't heard of kadcyla, but I'll ask about it. I'm so nervous about my op, I'm getting all my appointments now in preparation so its suddenly feeling very real lol. But, I'm also ready for it now. 

 

Happy new year to you too!

renpen
Member

Re: August 2020: starting chemo.

Hi Amy

It seems like it’s just you and me left going through this now!

I'm so pleased to hear that you got your taste buds back. I can’t wait to enjoy food again without the horrible taste in my mouth and fear of stomach upset! I managed to get fully dressed and made up with my wig on and did a good job of joining in for Xmas day although my 15 year old daughter cooked most of the lunch. But I’ve been exhausted since, I didn’t do much on the day except sit around, it was just the three of us as all our family are in Tier 4 ( luckily still tier 2 down here).

I saw 3 surgeons and they all tried to get me to go flat and have later flap surgery for the best outcome. I know it makes sense but I’m desperate to fast forward to a near normal outcome. And as I’m older than you my recovery will take longer and I’m struggling after 50 years of face cream, make up, hair dye, wonder bra and diets to live with my current self who has a few strands of stringy yellow hair with grey roots, terrible skin with spots and wrinkles, flabby tummy and no energy. So having something to put in the non wired granny bra seems like a good idea. 😅

My BCN mentioned possibly more chemo, but no one else has. I’ve read about Kadcyla for HER2 breast cancer is it hasn’t all gone, that’s why I asked the surgeon about what they find. The surgeon seemed to thank they would clear it all in the surgery but I know that the Kadcyla is quite new, so maybe they don’t know? I’m going to ask my BCN specifically, not that any part of me ever wants to do chemo again, but at the same time I NEVER want cancer again so I have to do everything possible to keep it away.

I’m starting counselling tomorrow ( phone based ) to help me to deal with it all, hoping this will help me accept a lopsided fake implant and make peace with extra treatment if required! 

Amy have you had a Herceptin and Perjeta treatment yet? I’d love to know if you had any side effects? I’m in for my first one next Friday.

Wishing you loads of luck for your surgery. Please let me know how you get on x Happy New Year x

Amy1988
Member

Re: August 2020: starting chemo.

Congratulations renpen on finishing your chemo! I finished mine 26th November and I'm feeling nearly 'normal' again now. Did you manage to enjoy Christmas? My taste just returned in time lol. My plan is similar to yours, surgery 4th January then radiotherapy and I will be having the herceptin after too. But my consultant has warned me that depending on results after surgery, I might have to have more chemo, I really hope not! I wish I was having reconstruction too. To begin with I said no, but I've been having 2nd thoughts. My surgeon said he would do reconstruction but told me there could be problems too and that could delay my treatment. So I've decided I will be flat for now and discuss reconstruction later. I hope you and everyone else on here had a great Christmas. I hope 2021 is a better year!

Maire
Member

Re: August 2020: starting chemo.

Well done on reaching this milestone. You have been through the mill with chemo so it is something to celebrate (when you feel up to it). Everything from here is bearable. Herceptin is straightforward for most. During my previous treatment I worked through radiotherapy and herceptin. I couldn’t have done that during chemo. It really is chalk abd cheese. Radiotherapy in 2013 compared to 2006 was much easier and I had no redness at all. It has improved so much. Wishing you all the luck in the world with your surgery. I have just received my prosthetic which slips into a pocket inside mastectomy bra. For anyone going down this route I have found it to be vastly more comfortable that my previous softie. I actually like popping my new bra on in the morning.

Merry Christmas to all on this thread. It has been quiet but I know folk will be dipping in and out. I hope everyone finds a way to enjoy this weirdest of all Christmasses. 🎄

renpen
Member

Re: August 2020: starting chemo.

Last Chemo done! Last Injection done! Feeling frankly rubbish today. But knowing that I’m past this phase really helps.

the new year will bring surgery, RT and 12 x 3 weekly herceptin and perjeta infusions,  but I’ve been promised that the SE from the infusions are minimal.

I’m waiting on a date for surgery, looks likely to be 25 Jan at the latest. After seeing Bupa surgeons I’ve discovered that ther really isn’t the infrastructure to have this done outside of the NHS, however one of the surgeons that I saw is head of breast surgery in the next town. He has agreed to treat me there under the NHS and will do an immediate implant using an adjustable silicone/ saline implant 😊 He says that there is  strong chance that RT will make it go hard and that I may want it replaced in 12 months (NHS will do this).

I feel so much more positive now I know that I don’t have to go flat for months. Apparently everyone is entitled to a 2nd opinion on the NHS. I met my original surgeon and she seemed to support the decision, she effectively told me he is a better surgeon! 
the new surgeon also examined me. I asked him what they could find in surgery that would be bad news. He said that if my cancer wasn’t responding to chemo I’d be feeling lumps now and he can’t feel anything to worry about. He says that if BC cells escape from the breast during chemo then the chemo will kills them, the rest of the body is not very hospitable to breast cancer unless you delay treatment. Let’s hope he’s right. 


I’m aware that the implant won’t be perfect and have booked for counselling in Jan. Let’s face it every step of the way I seem to have chosen the hard route so there’s bound to be complications. I can’t face the thought of the recovery from flap surgery now but maybe I’ll feel different in 12 months if a replacement implant isn’t suitable.

Keep pushing on ladies. I’m really hoping to be past the worst of this cycle for 25th but just getting past this will be a big Xmas present!

Happy Christmas 😘😘😘

 

Amy1988
Member

Re: August 2020: starting chemo.

Hi everyone. I just seen my surgeon and my surgery is booked for 4th January. Its lumpectomy for my right breast and mastectomy for my left. I feel happier now I've had a chat with him and the nurse. He said he thinks my op shouldn't have any complications and he seemed confident about it. On day 8 of my chemo so not feeling great at the moment. 

 

Renpen 

I'm really hoping my taste will be back in time for Christmas dinner lol. It's not been too bad this time round but still quite limited with food. So you're hoping to have your surgery maybe February? I feel like I just want to get mine over and done with now. The dates been confirmed (4th jan) so at least I can try and prepare myself!

Maire
Member

Re: August 2020: starting chemo.

Good luck Renpen. I was also told no reconstruction till much further down the line.  The surgeon was also quite arrogant.  I told him I definitely wanted reconstruction and he told me I would probably change my mind.

The fact that he turned out to be right didn’t make me like him any more.

Good luck with your last chemo. Well done on getting through what has been a very tough year. Congrats to Amy too. 

renpen
Member

Re: August 2020: starting chemo.

Amy you should hopefully have a little break from it all over Xmas! That’s good timing 😊 We have agreed to delay our Xmas day until 28th as I’m going to be rough after my last chemo and no one is visiting, it’s a bit sad but it’s been that type of a year!
Amy please do keep in touch, you’re a month ahead of me so I’m keen to hear about your surgery. Will you have the herceptin and perjeta injections? I’ve heard that they are not too bad.
I have gone ahead and booked a private consultation before my meeting with the NHS surgeon, so hopefully I’ll be able to compare my options and get a decent outcome. Would really like to end up wit a nice front and centered matching pair, but I never had them like that before!

Amy1988
Member

Re: August 2020: starting chemo.

Hi repen. So you're nearly at the end of your chemo too? That's brilliant, 1 part done! I'm on day 7 of my last lot now and not feeling great. I take quite a few painkillers too for my joints but I'm really trying to limit them now. That's a while to wait for a reconstruction! My surgeon has told me I'm not suitable for 1 straightaway so I'm not sure how long I'll be waiting. I'm going to try and enjoy Christmas as much as possible, will hopefully be feeling well by then. Hope you're ok 

Shi
Community Champion
Community Champion

Re: August 2020: starting chemo.

Renpen do what’s right for you you speak to your bcn again if they are still out of sorts call them out to see if they are just having lot of pressure on them, we never know what’s going on in peoples lives outside and if you still get short shrift then report to pals office. This is your life and you do what’s right for you ❤️💕💕Shi xx

renpen
Member

Re: August 2020: starting chemo.

Any last one done! Amazing, it must feel so  good!

i had number 5 of 6 on Thursday. I hate to tempt fate but for the first time ever the side effects are manageable. I’m not sure what’s changed? I have been taking magnesium supplements as my levels were low. I have also almost completely stayed off paracetamol where previously I was topping up 3-4 times per day. Now I’m wondering if some of my symptoms were literally me being poisoned by the paracetamol?

My onc has prescribed Venloflaxaine for hot flushes. It’s an anti depressant. I haven’t taken it yet, I’m a bit scared of messing with Serotonin levels and the side effect list is petrifying.  If anyone has tried it I’d be keen to hear.

i have an appt on 17th to see the surgeon about my mastectomy and LN clearance. I’m not at all sure I like her. They have told me that all reconstruction is on indefinite hold at my hospital which is really freaking me out, BC nurse said to expect early 2022! I need radio so I know it will be delayed. I do have Bupa cover so I’ve been looking into using that for surgery. My local Bupa hospital has been commissioned by the NHS for Covid so I’ll have to travel. When I mentioned it to my BCN she went a bit terse with me, so now I’m worried that I’ve pissed her off and that I’ll be even further back down the list! You’d think they would be happy to have one less NHS operation to pay for!

I'm going to stick with it though, getting the reconstruction done as well as possible is crucial to my mental wellbeing for the future, I know I won’t end up with a perfect pair but you have to try for the best outcome.

Sending love and healing wishes to all x

Shi
Community Champion
Community Champion

Re: August 2020: starting chemo.

🥳🥳for Thursday Amy 💪💪💪 you’ve done amazing be proud of yourself 👍👍😁👍👍💕💕Shi xx

Amy1988
Member

Re: August 2020: starting chemo.

Hi. Hows everyone getting on? I'm having my last round of chemo on Thursday! I can't believe how quick it's gone and now I've got surgery coming up. But the last lot of chemo I had has been so tough. Its been one side effect after another! And my taste has been off again, so I've felt really depressed about it all. I'm hoping they don't delay my chemo because I've got a cold which still hasn't cleared up. I hope you're all doing well 

ttyler
Community Champion

Re: August 2020: starting chemo.

Hi Renpen,

 I like you used to feel really tired after chemo. It used to be worse on the weekend before my next round. I would get through it by lying on the sofa with a duvet and dosing. My boys used to want to go out on their scooters so twice a day I would get myself up off the sofa and go for a slow, gentle walk around my cul-de-sac. This used to help me feel more awake and alert. Sometimes if I could not face the walk I would go and sit in the garden and let the fresh air blow over me. This too made me feel more awake. It’s lovely actually makes you feel alive.

 In terms of the fast heart rate, I had this too. I used to lay myself down, not flat, propped up with pillows and take deep breaths in and out to help slow it down. I have found out since finishing chemo that I have an irregular heart rate and are now on medication for this as well as for a blood clot on my lung which makes me feel breathless. I know you have seen a doctor and they have performed and ECG and are going to check your iron levels, which is great. I am no doctor so cannot diagnose any medical conditions, but if you feel that something is a little odd then keep on at you team. They are there to support and reassure you. I can’t fault my care as I have been thoroughly checked out with CT, VQ scans and a heart scan due in the next couple of weeks. Even now 6 weeks after chemo I still call the unit and explain any symptoms I have for reassurance. You too can do this, don’t ever feel like you are asking too many questions. You can also call the nurses on this site for support.

 

 I hope you start to feel like you have more strength soon.

 Take care of yourself!

 Lots of love ❤️ Tara xxx

Maire
Member

Re: August 2020: starting chemo.

Renpen,

You are not alone. I have had the exact same thoughts. Both times I’ve been in hospital I have thought about dying. The first time was when the cellulitis was not resolving even with super doses of antibiotics. The realisation that I could go into septic shock if things worsened was terrifying. It didn’t help that the doctors were struggling to cannulate.

Then when I was in hospital with diarrhoea at a very low point I started thinking of renal failure. At points I did start thinking how awful end of life might be.  So I can really empathise with how you felt and are feeling. But once you feel better those thoughts evaporate.
I was due my 5th chemo on Thursday past but  at my pre chemo visit the oncologist strongly advised I stop. I was totally shocked and weirdly disappointed. I now feel I haven’t completed the marathon and am having to completely change my mind set which is so hard. I was mentally prepared for what was to come and now I’m a bit lost. The onc felt it was too risky to proceed and that there was every chance I’d end up back in hospital. Obviously this would increase the chance of Covid too. In my case the chemo is to prevent recurrence/metastasis. I had no lymph nodes involved but high oncotype score. So they had to balance risk/benefit.

I ended up in hospital because I also had a temperature and racing pulse. It persisted for about 6 days. I think the raised pulse must’ve been related to the Docetaxol. I’m still having to visit the toilet several times a day so my bowel has not returned to normal yet.

I also felt tiredness and was breathless just going up stairs. I decided to spend short periods on the exercise bike but actually think this was a mistake as I ended up with chest pains (Could have been reflux). TBH I would just give in to the tiredness and let your body rest. Maybe set an alert on your phone to have a wee walk round the house every hour or so or pop out to garden to gulp in some fresh air. But other than that I’d sleep whenever your body tells you to.

I am now focussing on building up my stamina and am doing 3 mile walks daily. It’s hard to motivate myself and I am really finding hills hard. My heart is hammering and I’m panting but I need to persevere, nit least because I need to bring my bmi down by losing a stone.
This is my focus now my chemo has stopped, but while you’re going through it be kind to yourself and listen to your body.

Take great care

Maire x

 

renpen
Member

Re: August 2020: starting chemo.

Any top tips for dealing with extreme tiredness? I’m coming out of no. 4 and this round has made me the most weak. One Wednesday I could barely lift my head off the pillow. I felt like my body was shutting down on me. My heart was racing but no temperature. I get  exhausted going from the bedroom to the living room.

I am trying to eat lots of small snacks and meals and stay hydrated, not allowed to take any supplements. I was so worried I saw my go yesterday who did an ECG which was fine, but my heart keeps racing. I’m booked for anaemia tests on Monday, hoping that they find something, because it seems much harder than before. 2 more to go, but the last one will leave me feeling like this at  Xmas which worries me, it’s so unfair on the family!

 

i know it sounds dramatic but I get really scared of dying when I’m so weak. Not that I will die in my sleep but that this is what it will feel like when the cancer finally gets me. I think I need to increase my physical strength to help me with my emotional resilience. But I just can’t find the energy!

Maire
Member

Re: August 2020: starting chemo.

Renpen, Thanks for sharing your experience. I searched for your post once discharged as I remembered you had had an awful time. I tried Imodium yesterday. I only took 2 but didn’t notice any difference and would rather my body just ejected whatever is irritating it. I continue to have to visit the toilet frequently for v small amounts including during night. I’m a bit anxious that this won’t have fully resolved before my next chemo on 12th. Luckily I haven’t had mouth problems. It must’ve been miserable for you. It’s stressful enough being in hospital while the pandemic is ongoing.  I understand too about the depression: when you are unwell it’s impossible to imagine feeling well again. I was really worried I wouldn’t recover. This was due in part to lack of information. I felt really alone.

Good luck with number 4. I hope you have it a bit easier this time.

Amy, I’m trying out an eyebrow serum but it’s probably a bit futile while I still have 2 more chemos to go. I’m going to persevere though and once this is over I’m going to get semi permanent brows. My sister did this years ago and they look great.

Hope everyone else is continuing to battle through as best they can.

Maire xxx

Shi
Community Champion
Community Champion

Re: August 2020: starting chemo.

Hi Amy, brow stencils and brow powder kit with little angled brush from amazon and pencil liner to fake the eyelash look was Ysl one, you draw right where lash line is gently not like a crayon as you would if you had lashes, there is a girl online with alopecia she does great step by step tutorial about brows and lashes you might find it useful ❤️ Great head hair returning 👍👍 when your face hair returns you look like a fluffy chick face for a bit, don’t immac it off, it does settle 👍 hope this helps ❤️❤️💕💕Shi xx

Amy1988
Member

Re: August 2020: starting chemo.

Hi shi. How are you? I hope this doesn't seem random replying to an very old message! I'm just about to have round 5 of chemo and my hair is now starting to grow back. My eyelashes are very short now and I've got hardly any eyebrows left lol. I'm looking at the products you mentioned? Can I ask where you bought yours from and which ones did you find very good? Hope you're well 

 

 

Just a question to everyone and I hope it doesn't sound disgusting! I'm on the fertility implant (goserelin). I've had them right from the start but I still bleed at a certain time of the month. This month it's been more like a proper period, quite heavy. I've spoken to my consultant about it and she said she thinks my ovaries are very resilient. I just wanted to know if anyone else has experienced this? My mum said it's good, because hopefully I might not have fertility problems after this. Sorry if this sounds gross lol

renpen
Member

Re: August 2020: starting chemo.

Hi Maire

oh I’m so sorry. I’ve been on Docetaxel since the start and it is sh*t (literally in my case).

i was hospitalised after the first cycle after picking up an ecologist infection. There is no treatment for this, you just have to let it pass through. Urghh in particular I was rdehydrated despite drinking loads of water.

cycle 2 I still has diarrhoea. I didn’t use Imodium but I took dioralyte after every bowel movement and managed to hold off the dehydration.

cycle 3 I ate a completely gluten And dairy free diet. Mainly rice crispies, banana, White rice, a few peas and some chicken an fillet steak because I really craved it. I didn’t get diarrhoea but still a very sensitive stomach. I also took 2 omeprazole per day and gaviscon helped too. However I picked up a bacterial infection and ended up having a night in hospital and antibiotics that caused diarrhoea! I also had about 3 days of deep depression, couldn’t stop crying, convinced I couldn’t get through it. Once the antibiotics took hold I really picked up and I’ve been able to get past the negative feelings (poor husband got it both barrels for a few days though!)

Ive been cleared by by onc to use probiotics now, but at first I was told they might give me an infection as it’s live bacteria. My poor stomach needs some help now!

Cycle 1 I also had v bad mouth sores. For 2 and 3 I sucked ice cubes ( water and squash) during the docetaxel,  it was tough because I’m cold capping and my treatment takes over 6 hours in total but I think it really helped. My mouth did get sore but nothing like the first time when my teeth would have to be peeled off my lips when I woke up in the morning.

the other change was that after cycle 1 I spoke to my onc and they reduced the dose. Do speak to the hospital about this before giving up.

we can do this! I’m in Again tomorrow for no 4 of 6 and absolutely dreading it. But it is working so we must stick with it. When you’re feeling well enough speak with your onc and see what they can do to help you. You will get through this. Sending lots of love xxx

Maire
Member

Re: August 2020: starting chemo.

Home from hospital yesterday after a few blips. After much debate the conclusion was it was a chemo reaction. I believe there was a bacterial element as my heart rate was around 90-100 for about 5 days. Bowel not back to normal but I feel much better. I really don’t want to repeat this experience. It really brings into focus the risks we have to weigh up in signing up to chemo and esp when the NHS is under pressure. I spent a day in ARU as hospital beds were all full. This was the most terrifying and isolating day when my thoughts were racing and I felt truly alone and vulnerable. 
Ttyler sorry to hear about clot. So glad it’s been identified and treated though!

Fingers crossed that everybody’s treatment is going well. For those facing Docetaxel it’s worth taking probiotics to support your gut health in advance esp if you have been on antibiotics.

Take the greatest care xxx

ttyler
Community Champion

Re: August 2020: starting chemo.

Hi Marie,

Sorry to hear you are feeling unwell, I hope they get to the bottom of things soon for you.

 I myself had trouble with a fast, irregular heart rate last week and have been put on Beta blockers for it. I rang the ward after getting what I thought was severe heartburn and was told to go to A and E as they were concerned about a heart attack. I finished chemo over 4 weeks ago and kept thinking I feel worse than when I was on it. I had 3 scans and it was discovered I had a blood clot on my lung. I am on blood thinners now for 6 months to prevent anymore whilst my body works on dissolving the one I have. Have to say I have felt much better the latter part of this week now it is sorted, I’m hoping you will start to feel more like yourself when they have you sorted. Please talk to your team before you stop treatment because you are so nearly there now. You can do it!

 

 I have started radiotherapy this week, this is a walk in the park compared to chemo.

 

 Keep fighting ladies!

 Love 💗 Tara xxx

Amy1988
Member

Re: August 2020: starting chemo.

Aww Maire, how horrible for you! Chemo is so tough at times. But hopefully the hospital will be able to sort things out for you. I hate hospitals, but I've had to get used to them now! Thinking of you and I hope you get better soon. Stay strong, you will get through this 

Maire
Member

Re: August 2020: starting chemo.

Wee update. I was admitted to hospital on Thursday night due to temperature and raised heartbeat along with unabating diarrhoea. I am no further forward with treatment other than rehydration. They are waiting for results from stool samples. Meanwhile pulse still fast and diarrhoea awful. There’s talk of camera up bum which I don’t want. Feeling v anxious. It’s not been a great experience so far. I have decided if this resolves I’ve had enough chemo. I’m actually quite worried.

m_bee_w
Member

Re: August 2020: starting chemo.

Maire - I think we're on very similar cycles. I've just completed 3 x EC and had my first of 3 Docetaxel cycles on Friday. Finished my fifth and final (for this cycle) filgrastim injection last night. Like you, I can't wait for this to be over with. I'm due my final cycle in early December and it's all I can focus on right now. 

I'm finding Docetaxel a completely different experience to EC. I've not had any nausea this time, just the usual bowel issues, but it has made my legs extremely achy and painful, and causing agonising peripheral neuropathy in my lower legs and feet, particularly when I'm in bed or resting. It feels like stabbing electric shocks in the soles of my feet and my ankles feel too weak to hold me up. I know this is a side effect of Docetaxel, but I'm wondering if the filgrastim injections have contributed to it too, and now I've not got any more of those until next cycle it might start to ease?

Maire
Member

Re: August 2020: starting chemo.

Half way through Renpen and with a fantastic result. That is the best news. Hope you get on top of the nasty side effects.

I am day 7 post Docetaxel and it has been pretty rough. Very bad total body pains on day 4/5. Then for day 6 and 7 I have been basically in the toilet with constant evacuating bowels. Today I’ve been 9 times between 7 and 9am. Felt v shaky so have guzzled berry juice to up sugars. Will try to eat a bit of bread soon.

Last night I was wracked with lower spine pain. Constant contracting shudders. I’ve had it before on day 10 (Filgrastim?) but it has been fleeting. Going to bed didn’t help so I took paracetamol and brufen. No obvious difference. So then took piriton and I hoped it would have a muscle relaxant effect and I had done extensive searching on forums where people had been advised to take clairityn. Result. It worked almost instantaneously. 
Im obviously not medical but just want to share my own experience in case it helps.

Today I’m washed out and will be hugging onto the couch with a furry blanket. 
2 more to go for me and hoping I feel more human soon.

Maire ♥️♥️♥️

renpen
Member

Re: August 2020: starting chemo.

Well Chemo no 3 was another challenging one. I felt real low physically and emotIonally for over a week, culminating in an overnight stay in hospital on Friday when my temperature peaked. They couldn’t find any reason for the high temperature, my blood count was really high, so high that the dr had to re-check my results to make sure that they were mine as she wasn’t expecting it to be so good 8 days post chemo. This is the 2nd time I’ve been in hospital and they keep telling me my immune system is so strong, yet I get knocked so hard by the treatment. I do wonder if my immune system is fighting hard against the chemo and that is what makes me feel so bad?

Anyway they gave me IV antibiotics wile I was there and I felt immediately better so I guess there must have been some infection there. They sent me home with oral antibiotics. Guess what the side effects are? Insomnia, Nausea, Diarrhoea and Mouth sores! The diarrhoea has been the worst, but I’m using the ondanstraton Anti sickness to keep it under control.

i had some positive feedback on my ultrasound. The onc said that the main tumour is over 30% smaller! So after a week of panic because the radiographer said she couldn’t get a clear picture I am finally starting to feel like this is all worthwhile and tentatively planning a future! They are going to do an MRI as well for more clarity but knowing that the treatment is working has given me such a boost.

Also, my gorgeous step daughter is visiting this week. She’s a primary school teacher and lives in the North East so we were a bit concerned, but she managed to take 3 days leave before the end of term to isolate, then took a Covid test at the weekend to be sure she was ok to come, my 15 year old is very close to her and she seems to have ‘come back to life' having her sister here so it’s been a positive week all round.

I'm halfway through my chemo now, so I can start focusing on the end at last. Let’s hope we all sail through the second half- I reckon I’ve had my share of drama in the first half!

Amy1988
Member

Re: August 2020: starting chemo.

Hi lucy. How are you? When I first got told i would lose my hair, i wasn't too bad because i just wanted to get better. But on the day when I had it shaved off I was so upset about it before. I was worried about how I'd look and i thought it would just make me look more ill. But once it was done I felt relieved in a way. It had been coming out in the hairbrush and I wanted to take control before chemo took away the rest of it. I wear headscarves when I go out and put on a bit of lip gloss to try and add some colour to my face, I'm very pale! I still get nervous about people laughing at me when I go out, but I tell myself, that's their problem not mine. Be proud of yourself and that you're fighting this! Good luck for Tuesday. Hope to speak soon 

Shi
Community Champion
Community Champion

Re: August 2020: starting chemo.

Lucy ❤️ You are being hard on yourself, the chemo can make you feel like this at this point, but you are doing right thing and being careful 👍and double 👍👍fir being careful during what’s happening currently ❤️ They mean well. Just tell them you appreciate being invited along but you want to keep safe and would you be able to join via zoom or something ❤️ Be kind to yourself you can’t please everyone and this is the time for putting yourself first ❤️💕💕Shi xx

lucy53
Member

Re: August 2020: starting chemo.

Hey all how is everyone?

I'm due round 6 this week. only 2 more to go after that. my hair has fallen out loads this week & now have very showing bald patches. im getting it shaved on tuesday & cant bare to go outside or meet people. didnt think i'd be as bothered as this but its really getting to me. my mates keep trying to meet up but just cant face them. is anyone else in same boat or got any tips on how to embrace this better? feeling a bit pressured from folks which is annoying me (know that they are trying to help & i'm just being grumpy). just want this all over and done with!

lou x

Maire
Member

Re: August 2020: starting chemo.

Amy
Try pineapple too. Fresh not tinned. It has special qualities. Also maybe fruity/smoothy  ice  lollies. I lost all taste and my tongue felt dead. Horrible. It did last for at least a week but got better very quickly when it resolved. Once you get through the first one it gets quite predictable and my tongue always felt better on the same day. Makes it easier when you know what to expect.

Im at roughly the same stage as you. Only 2 rounds to go but I’m dreading it being delayed. My white count was only 2.5 but theY gave me it anyway and didn’t mention it. I just spied it in my notes. I am just desperate to have it well over by Christmas even though Christmas may be different. I’m on day three of doxetaxol and not hit any major problems but I remember being bad by day 5 in 2013 and lay on couch in tears with pain in legs and just a bit of self pity (it was Hogmanay and I felt I was letting everyone down).

If anyone has tips in boosting WBC I’d be grateful. I think I ate mushrooms last time!

 

Amy1988
Member

Re: August 2020: starting chemo.

Hi maire. How are you? Yeah, I'm on docetaxel. Things either taste really sweet or salty! Its disgusting. I joke about it to my family but its quite depressing. I love food (a bit too much lol) and now I'm starting to dread meals. I'm trying to just snack now and not have proper meals, I don't think I can stomach it at the moment. Its good that you say it wears off eventually. This happened on my last round of chemo but it was the different stuff. But it only lasted for a few days. I'm worried this won't go this time round. Fruity stuff seems to be ok for now and I'm trying to have really strong flavours. Only 2 more rounds of chemo then hopefully things will get back to normal. How far are you on your chemo now? 

Maire
Member

Re: August 2020: starting chemo.

Are you on Docetaxel Amy? It makes your tongue feel awful. It lifts suddenly and you get your taste back almost overnight after about a week. At least that’s what happened to me in 2013. I found viscose foods soothing eg cream of tomato soup. I also rinsed with salt water.

Check for thrush too. Your tongue will have a coating if you have it. You can get treatments on prescription.

Good luck with it. I found it the most soul destroying part of chemo last time.