July 2021 Chemo Starters

[sharlea]

Hello to everyone on our group starters,

I hope you are all coming to an end of your treatment, or maybe a little break between treatments, and, that you are feeling somewhat better.

I finished radiotherapy a fortnight ago, thankfully no burns, but a fair bit of pain now and again, codeine to the rescue. Had chemo cut short due to toxicity, that nasty Docetaxol + Cyclophosphamide combo, which even my oncologist said was tough.

Meanwhile, I think a big congratulations is deserved, to all of us for getting through whatever we could of our treatment. Wishing you all the best for the future, sharlea.

[Corina]

@katenonip @Jennet 

It’s good to hear from you.
I’m so sorry to hear things have been difficult, all I can say is that you should be so proud for enduring all of this. Better and brighter days will come to you soon, just hang in there. You are very brave. 
I wish you all a very happy Christmas, I hope you can make the most of it. 
Lots of love to you and everyone xx

[Jennet]

Hello everyone, gosh what a time we're having. I hope things are starting to settle down for everyone. An update from me, because I've been very not-present on the forum for all sorts of reasons. So I finished chemo 6 weeks ago, had a mastectomy and lymph node removal two weeks ago and got the histology results two days ago. Micrometastases were found in 2 out of the 10 lymph nodes removed, and in some of the breast tissue - tiny tiny but it meant the chemo hadn't quite eradicated everything.

So, I will have radiotherapy to the chest wall and clavicular lymph nodes (is this a thing?) as planned, and start on Kadcyla in the new year. 13 courses 3 weeks apart. A bit of me wants to cry. A bigger bit of me thinks, well the chemo has done its job, surgery has helped, and radiotherapy will help even more. Kadcyla seems to be better tolerated than some of the awful chemo I had before (docetaxel, epirubicin) but anybody with any experience let me know if that's wishful thinking...

Also started on Letrozole today and will be having bisphosphonates from February.

My scar is healing and I'm back doing my exercise routine along with LCHF diet to try and manage the diabetes. I have lost 5kg (hurray) but how much does a breast weigh?

So, somewhere in the next couple of weeks I have to manage my birthday (60 on Saturday - I know, I don't look it but give the Letrozole time), Christmas, a son in London who's isolating, the 3 year-old twin granddaughters who are beyond excited and there are still 9 more sleeps.

Love to everyone for a peaceful and pain free holiday

Jennet x

[katenonip]

Hey Corina,

So lovely to hear from you. I am so pleased you have finished your chemo.  Is your radio every day? So pleased you have a two week break.  I am so sorry for the radio silence, I had a really bad time and didn't want to worry anyone.  I got an infection in my boob and was on antibiotics for three weeks.  I had to have an emergency operation to try and save my implant.  I missed chemo and herceptin and final chemo was delayed by 4 weeks.  I have been home schooling my little one for three weeks as Covid is rife at the school and I couldn't cope with a delay to my final treatment.  I was so worried that the delay meant that my chemo hasn't worked properly.  It will always be a worry.  Anyway final chemo was last Thursday and I have the last injection tonight so hopefully the pain will lessen over the next few days.  

Christmas is weird this year, I haven't wrapped one present or finished shopping. I haven't even done cards which is the first time ever.  I really thought that we would all be looking forward to 2022 and we could finally enjoy seeing friends and family. I feel like I haven't been out in 2 years.  

I hope everyone has a wonderful Christmas and that everyone is ok.  It is so bloomin tough.  Even now I am checking my boob everyday as constantly worried about infection. The new year brings many classes on coping with the menopause as it is the disturbed sleep that is bringing me down.

Corina - I really hope that the long covid eases soon.  Hopefully once the chemo is out of your body you can look at taking some medication that can ease these symptoms.  Isn't it ironic that since being diagnosed I haven't taken any multi vits as oncology said wait until chemo is over. 

Anyway sending everyone love xxx

[Corina]

Hello everyone 

Hope you are doing well. I’m assuming that some if not all of you are coming to an end of your treatment and of course for some there’s still a long road of recovery ahead. The forum has been quiet and I only hope that’s because you are taking the time to focus on your health and well-being. 
Today I had the last cycle of chemo, it was bittersweet as you can imagine but it’s done. I have two week break before starting radiotherapy for three weeks. These past six months have been very difficult and next challenge for me is to get over my long Covid smell/taste disorder. Hands on heart that has been the bane of my life emotionally and of course chemo has made it 10 times worse. But I’m trying so hard to stay positive and believe that it all goes back to normal soon. 
One thing I wanted to mention is side effects with Taxol, I had a very bad case of nose bleed. I don’t know if you’ve experienced it too. It’s been relentless and I can’t wait for it to be over. I’ve also had very sore nails and they are all discoloured I just hope I don’t lose them! I guess a small price to pay for a hopefully successful treatment. 😊 
I wish you all a merry Christmas and good health. Here’s hoping for a better and brighter 2022 for everyone. 

Take care xx

[Kaisa]

Hi all July 2021 starters,

I've had the results of my mastectomy - all tumour removed, margins clear and none in the 3 lymph nodes the surgeon removed. BUT - there was no evidence that the chemo had effect on the tumour/cyst! I am obviously very upset about this (hairless, vision changes and digestive problems for nothing). I know there is no guarantee with chemo but it could have at least done something to it, but then again, I only did 3 cycles and felt the tumour grow (from 5cm at start to 6,5cm) so that's why I refused the next 3 cycles with a different drug plus my body had that gut feeling that removal was the best option.

My scar is now about 38cm long, a bit lumpy but has healed well. I am though bothered by seroma. Four drainages so far = 1500mls. I am going for another drainage today - gone from a flat chest to an A/B cup and it's really sore and annoying.  Unfortunately there is only one BCN that can drain it where I live (far north of Scotland) so once I had to go to A&E and the surgical consultant had to do it (hadn't done one for years) and left a bruise.  

Tomorrow I start Phesgo injections.  Anyone else had/have these? I am worried about it but think the options of getting nothing and risking more cancer elsewhere outweighs the side-effects? I am not sure. Also starting on Tamoxifen - now I sailed trouble-free through my menopause so hoping this will not cause too much of a problem with me. 

I am also feeling low but I think this is the norm considering all the trauma my body and mind has gone through. Not getting all the support/help at home my son and husband promised me hasn't helped and I am frustrated and disappointed with them and also with me for thinking they would understand. People think I am now clear of cancer and will revert back to normal asap - I wish I could share my tummy/bowel upsets and seroma pain with them! My BCN has given me good advice and told me not to expect to heal as fast as I wish, my body needs time to repair but maybe come Spring I'll feel OK. Great, just in time for the start of our lambing - busiest time of the year!

Anyways, I wish you all well on this unwanted journey we are all on.

Kaisa

[Corina]

Hi Sharlea, thanks for your message. I didn’t appreciate that you could get the jab in you leg, I’m glad this was an option in regards to your surgery. 
I am also having radiotherapy but once the chemo is finished. I’m sure that comes with its own problems not least because it’s going to be every day. Hope we all get through our treatments unharmed and we have a better and brighter future to look forward to 😊 

Take care x

[sharlea]

Hi Corina, sorry to hear about your numb tongue. I didn’t experience this, but did have some numbness in my fingertips, balls of feet and toes, called peripheral neuropathy. Yes, had my booster in the leg, as had lymph surgery both sides, and it has swollen with warmth and redness, hope is goes down soon, as a bit painful. My chemo had to be stopped due to toxicity, nothing to do with numbness, was fever and fainting. Hope you can get through your course. Am starting radiotherapy at the end of the month. Do you know if you’re needing any? Take care and best wishes, Sharlea 

[Corina]

Me again! I had my booster jab last week. The injection site turned to a big red patch and was very sore for a couple of days. It’s getting better now. Make sure your injection is not on the side where you had lymph node surgery. 
Also the chemo seem to have affected my taste in a much more significant way as in I can’t taste salt or seasoning in food and on Thursday my tongue felt numb. Has anyone experienced this? I only hope that the side effects won’t affect the course of the treatment 😔

Hope everyone’s ok xx

[Corina]

Hi @sharlea 

Good to hear you’re feeling better. My chemo finishes in five weeks time and I will have radiotherapy for three weeks after that, then I’m done. I can’t wait. 
I’m on Taxol and so far it’s more manageable than EC. I did have a period of nose bleed which was a nuisance but it’s getting better. 
No pins and needles but that could happen any time as it’s the common side effect of Taxol. 
Good luck with the jab and radiotherapy xx

[sharlea]

Hi,

Yes, I’m having my booster jab this coming Saturday and the oncologist said it was ok. She had had hers and felt ok,  it obviously not having chemo! I did feel a bit bad after the second jab,but that was before chemo, so am hoping the booster won’t be too bad.

I am having radiotherapy starting at the end of November, for five days. Anyone else starting soon?

My chemo was stopped early due to toxicity. The risks outweighed the benefits. I AM starting to feel noticeably better, physically and mentally. I had Docetaxol and think it affected my moods at time in a very low place. Would like to say that it does get better. Gaining more strength every day.

Hope all is going well for everyone. My best wishes to you all.

[SeaUrchin]

Hi @Corina 

I've also checked with my oncologist that if I can I my booster jab. He said I will be ok have it. Although had my last chemo a week ago,  I had my blood levels checked yesterday and they are ok. 

I will be having my booster jab tomorrow too. Hopefully we won't get too many side effects. I will report back.

@Jennet how are you recovering from your last chemo? 

Is anyone having radiotherapy soon? 

I hope you are hanging in there. 

Take care every one. It is not for long to go now.

X💖X

[Corina]

Hi all

It’s not possible to start a new query so replying to my last message. 
Has anyone got their booster jab? I’m having mine tomorrow and even though my Oncologist has said it’s ok to do so I’m worried for some reason! 

Thanks x

[Corina]

@Kaisa Hope you’re recovering well from the operation and I hope everything is going to be ok with the results. 

@Jennet It must be a relief to know you have your last chemo next week hope all goes well. 
I had my 4th Taxol last week, 8 more to go. I’m tolerating it better than I did the EC but that may change. I hear the effects of taxol is accumulative, the nurses told me I will more likely experience the neuropathy on the 5th/6th cycle. They said if it turns out to be too much to tolerate they might have to reduce the dose. I’m always nervous about that in case lower dose will reduce the impact of the treatment. 
I’ve been feeling a bit low these past few days, everything has been piling up with the treatment and my smell disorder which doesn’t seem to be improving and the horrible hot flushes, it all gets too much. Sometimes I fear if everything will go back to normal again and if I will feel normal again.  
Anyway I hope everyone’s doing well and keeping safe xx

[Kaisa]

Thank you @Jennet x

First week has passed and today I had my first seroma drainage - 370mls! Nurse happy with my wound and next week she's going to remove the dressing and drain more seroma if required. 

I get the histology results on Nov 5th. 

Take care x

[Jennet]

Hope you’re recovering well from the operation @Kaisa 

rest well and be gentle on yourself when you can - thinking of you 

[Jennet]

My experience is the tiredness is cumulative and I’m not bouncing back from docetaxel in the way I did with earlier cycles. I’m on day 15 of cycle 5, the second of docetaxel and I have the sixth and last one next week. Still having upset tummy and diarrhoea…

…but at least an end in sight. Hope everyone is coping ok. 

[Kaisa]

Hi @SeaUrchin , not sure what he meant by squishy, my brain was really not in gear when he spoke to me after the op yesterday and today I forgot to ask. Will ask the BCN when she phones next week. I am home now and shattered, 2.5hr drive from hospital. Too tired to sleep but I'm in bed. Painkillers working, bruising showing more and more. 

I took cocodamol for my pain after the filgrastin inj - awful bone pain! 

Take care x

[SeaUrchin]

Wishing you a speedy recovery @Kaisa. You just had a life-changing operation to get better and have a normal (as normal as it gets) life. I hope you won't get too much discomfort during your recovery. Good to hear everything is fine. What did your surgeon mean about the squishy sentinel node? 

I had my 5th chemo session and 2nd Docetaxel regime today. There is one more to go. Last time, I had a list of side effects including joints, bones and muscle pain. I'm not sure if it was due to Pelgraz injection or the side effects of Docetaxel. I had to use co-codamol to ease the pain as it was rather painful. I also had eczema all over my hands. My BCN recommended using Udderly Smooth moisturizing cream (never heard of it before) which is helping.  The good news is, I don't get nauseous or sick with Docetaxel.

I have reduced my working hours as I'm getting tired and each time it is taking me longer to recover. The BCN said it is the accumulative effect of chemo.

I hope you are all managing side effects and keeping positive. Take care everyone. Please hang in there. There is light at the end of the tunnel 😘

[Kaisa]

Don't know how to start a new post on this so replying to my own thread.

I've had my simple mastectomy today - surgery took longer than expected but the swelling from my biopsies had grown quite a bit and my arm kept knocking in to it and it was getting really sore. Not seen scar in a mirror yet - no mirror in the bathroom here (!) but I can feel it extends from behind armpit to up middle of chest. One sentinel node was "squishy" my lovely surgeon said but all else looked fine. Fingers crossed! Thankfully no sickness but had fasted since the night before and only came out of theatre at 6pm so I was hungry! Drain is in the way but easy to carry when I pop to the loo. 

Feels odd not having my boob there, tender and a bit tight but will start exercises once they show me what to do and also load up on painkillers. It's past 11pm now and hopefully I'll  be able to sleep but they're doing 2hrly obs on me so ... I'll zonk out when I get home, hopefully tomorrow.

Take care everyone, my travel companions on our unwanted and unexpected journey xx

[Corina]

Hello @sharlea 

I’m sorry to hear about the changes in your treatment. It must have been difficult for you and your doctors to make the decision but as you said if the chemo made you feel more ill then that would defeat the object. 
Have they said if there are other options in addition to radiotherapy? 
I’m in my weekly taxol now and although I may have not experienced any severe side effects I am apprehensive about the accumulative effects in coming weeks. 
I hope you are feeling better and I wish you all the best with the rest of your treatment and recovery x

[sharlea]

Hello to everyone on July chemo starters,

Had a face to face with my oncologist on Wednesday, and wonderful news, no more chemo! I’d been admitted to hospital for a few days after a fever, faint and start of fitting, have peripheral neuropathy in my feet and fingertips, utterly fatigued, sitting on sofa for most of the last cycle, now feeling a great sense of relief. She said the risks of another cycle outweigh the benefits. And my regime was really tough, so well done to have got this far.

I was going for my fifth TC this afternoon, will celebrate with a fruit smoothie instead! Next is the portacath removal, probably next week. Then a few weeks to recover a bit, then radiotherapy. Was told to expect about six months to recover fully from the chemo.

Sending everyone still having cycles all my best wishes, sharlea 

[Corina]

Hi @katenonip 

Hope you're well and recovering from your chemo. I'm pleased to say that taxol went well and didn't make me feel sick. They gave me anti-histamine as pre-med which made me very drowsy and spaced out for the duration and rest of the day. But after sleeping it off, I was ok and managed to have dinner and stay up a bit to watch tv etc which was a nice change from the EC round. My cardiac test results were all fine for now, but I'm not any closer to knowing what causes the palpitations. I give up! 

I just feel a bit down emotionally, dreading the long autumn and winter months. I can't wait for all this to be over but I also think about post chemo and how soon I can regain my energy and strength. I shouldn't complain though I know, everyone is having a hard time some more than others. I keep praying for all of us to reach the end of our treatment and start feeling happy again. 🙂

I hope you manage to get your jabs booked. I think you definitely have some immunity from having had the Covid, that's what I've heard anyway. 

Hope you and everyone here are having a restful and relaxing weekend x

[katenonip]

Hi @Corina 

Sorry for the slow reply, I gad chemo yesterday and it just feels like a busy week with work and appoitments. I am still in my dressing down 🙂

How are you feeling on your taxol? I am glad you've got your flu jab. I have been battling with 119 and my GP. So we are on the seriously vulnerable list and you should be allowed the 3rd dose 8 weeks after the second jab.  I am trying to book mine but it has to be within 72 hours of next chemo so no spaces as yet. I also ordered an antibody test just to put my mind at ease to see if I had any immunity from covid or not.

Have you heard back regarding your tests?

I hope everyone else is doing well this week too. Sending love xx

[Kaisa]

Hi

Its been quiet amongst us July starters. Just wondering how everyone is getting on?

I've had 3 rounds of EC (last one on sept 1st), refused the the next 3 with another drug (I had valid reasons) and am now booked in for a simple mastectomy on the 12th October. I wanted a mastectomy before chemo but the protocol here seems to be chemo first to shrink the tumour, I felt I had no choice in the matter.

The chemo side-effects have waned a bit but I still have stingy eyes (use gel eyedrops), zitty inflamed face and am tired. Fed up of shielding, long to do the weekly shop and meet up with friends at the café but then again I don't want to pick up a bug before my op.

Take care and thinking of my fellow travellers on this unwanted journey.

[Corina]

Hi @katenonip 

I think I will be given those meds but I’m not sure about the dose yet. My oncologist said the taxol shouldn’t make me feel as sick but there are other side effects that I’m worried about like the numbness and tingling in hands and feet. I just hope it’s not as bad as it’s reported. 
I should get the result of my cardiac tests soon, hopefully there’s nothing serious and palpitations are linked to chemo. 
Re booster jab, we should be getting ours 6 months after the second jab. I had my flu jab on Saturday I was told it was absolutely ok to get one. I think your surgery should contact you to book the jab. 
I hope your treatment goes well this week. I know what you mean about the private insurance. I’m grateful for having my treatment done via insurance. Having read some of the posts, it looks as though it can be a bit challenging to go via NHS. Having said that I think it’s right for patients to make sure they are getting the right care and keep checking that the staff are providing them with the right meds etc. 
I keep my fingers crossed for everyone and pray we all complete our treatments successfully. 

take care x

[katenonip]

Hi @Corina  

I really hope this goes well. I hope it is easier than the EC for you. Fingers crossed.  Have they reduced your steroids and anti sickness for the next cycle or are they the same?  Have you heard back from your tests as yet?  

Well I am very confused about the whole covid booster as I don't think we fall in the 1% of people that were eligible.  I called 119 for my booster jab and I won't be due mine until 3rd December as my second jab was 3rd June.  I am hopeful that this means that I still have some immunity to covid.  I also need to book my flu jab but I am unsure at what stage through the cycle that we book this for.  Does anyone know.  I am seeing my oncologist for the first time on Thursday so can always check with her then.  Round 5 on Thursday!! Another Zolodronic acid and my second herceptin injection so a little worried that next weekend might be a struggle looking after my little one on my own. My partner is back ion weekends for a few weeks so it's just us two all weekend.  

I often rant at him as to why he never added me to his BUPA health insurance but ce la vie.  The NHS staff around Oxfordshire have been really outstanding so I am grateful for that.

I hope everyone is having a good Sunday 🙂

[Jennet]

Oh @sharlea that’s not okay. It really isn’t. This whole thing is difficult enough without the people caring for us making it worse. Nursing is a really tough job, lord knows I couldn’t do it and I’ve been really lucky so far with the nurses looking after me. A big ticky box form sounds very sensible, even if you shouldn’t have to do that. Checklists are well evidenced in health care for improving outcomes and avoiding errors. Hope your chemo is going okay xx

[Karen Mc]

Must have been tempting fate as for the first time on Wed I asked the nurse as he she was sorting out the meds at the end, shall I put the injection in the fridge?

After a mad panic and checking all the picking lists, her fridge in the car etc, it hadn’t been sent! No problem she rang head office to have it couriered for the next day. Traffic problems on M5 meant it arrived at my house at 10pm.

[sharlea]

Hi Jennet,

Your nurses sound brilliant. Unfortunatey, sometimes our chemo nurses ask patients what meds they need to take home and I feel that I always have to be so on the ball, as it were, to ensure I have everything. When they told me I could go, I just didn't think about them not having given me the injections (that foggy old chemo brain doesn't help). so next cycle, will be taking in a large chart, with med list on, and a ticky box to tick, with big note at bottom, not to leave without those ticky boxes done.

Unfortunately, there are nurses on my chemo ward who feel they are extremely overworked, and also very resentful of being on the lowest band, and happy to have conversations about this in front pf patients.

Take care, sharlea

[sharlea]

Thank you Kaisa,

Yes, you are so right, we do seem to be supersensitive going through chemo, it really does take a physical and emotional toll. What might seem a simple oversight to a nurse, felt like a a very big thing to me, not really due to the distance travelling, but that it was yet another thing that had gone wrong. Take care, sharlea

[Kaisa]

Thank you @Corina, I will put these on hubby's shopping list. He and son have to do the shopping (I am shielding before my mastectomy) - they hate it 😂

[Corina]

Hi @Kaisa 

I’ve always used deep cleaning lotion from Clean&Clear brand to manage blemishes. The Neutrogena facial wash is also good.
Every night I use a cotton pad to clean my face with the lotion and washed my face with the Neutrogena.
Hope things will improve soon 😊  

[Corina]

Hi @katenonip 

Thanks for your message. I haven’t had it yet, will start next week. I’m quite apprehensive as I don’t know what to expect. With EC I knew the routine and I was ready for it. I just hope it doesn’t make me feel as sick. 
I’m still struggling with some palpitations for which I’ve seen a cardiologist and having some tests done so will have to wait and see. And of course my smell and taste disorder and tinnitus continue. I wonder if tinnitus is also part of long Covid symptoms. Who knows! 
Enough about me, how are you? I hope you’re feeling better and managing your symptoms. 
I guess this applies to everyone here but I have been put into the high risk category by NHS. I wonder if this means we are soon asked for booster Covid jab? 
Anyway I hope everyone is doing well. I keep everyone in my prayers xx

[katenonip]

HI @Corina 

How are you doing after the round of Taxcel, I know you were worried about the side effects being worse?

I hope you and everyone else are doing ok this week.

love Kate

[Jennet]

Hi @sharlea I just wanted to respond to your post about nurses forgetting the injections. Of course you’re upset about it. It seems as though they weren’t being methodical and they should have double checked you’d got all your meds before you left. Each time I’ve been for chemo the nurses have checked the meds for each patient in pairs at the computer, then gone through it all with me, and I’ve asked for a print out of my bloods and meds which they’re happy to give, so I go through it with my husband when we’re home.

So it might be worth asking for a print out. Hope you’re coping well with the chemo snd your feet aren’t too sore x

[Karen Mc]

My injection 6mg Neulasta has to be done at least 24 hours after my chemo so the chemo nurses leave in my fridge and I just have to take out of fridge half an hour before they arrive the next day.

I have  been following all your posts but haven’t worked out how to make my own post!

I have my 4/6 FEC cycle this Wed.

I’m lucky that my husband gets Bupa through his work so all my treatment is done at home , chemo nurses visit once a week on weeks 2/3 and three times on treatment week (bloods, chemo, injection)

I had a 30mm grade 2 ER+ HER2 - tumour removed, with an Onco test of 31 the oncologist recommended adjuvant chemotherapy to reduce the risk of the cancer coming back.

I feel ill (like a hangover without the alcohol 🤣) for about 5 days per cycle. Dizzy, breathless, metallic taste etc but the rest of the time I can cope with. Lost my hair halfway between cycles 2/3. Have a wig, variety of hats but mostly just embrace it. My head feels so hot with anything on it.

having flu jab tomorrow and waiting to hear from consultant about booster or 3rd dose of Covid vaccine.

[Kaisa]

Hi @sharlea - that happened to me too! Nurse did mention injections on my first session and forgot to give me them at the end (they were in the fridge). My husband had to go back for them but luckily we only live 3miles away. 

But however far or near we live the hospital it is still an inconvenience! The next 2 times I reminded the nurse about the injections. And I do understand how you felt - we're supersensitive going through chemo and I too felt annoyed about their error - specially when everything was new to me.

I hope your ointments help your feet.

Take care x

[sharlea]

Hello Corina and everyone else on our monthly thread,

I hope you’re all doing as well as can be, considering all were going through.

I had my fourth round of Docetaxol and Cyclophosphamide yesterday afternoon, hoping, just hoping that it might be my last, but no, the regime is still scheduled to six cycles. However, due to me promptly reporting tingling, numb fingertips and feet, my oncologist had reduced the Docetaxol by 20%.

Also, they’re concerned about my feet especially as lots of skin coming off and cracking in between toes, potential for infection, plus drying skin on hands and legs. Have been prescribed two types of ointment to help. Told to use fragrance free emollient soap free body wash.

However, what upset me most was that, despite asking twice. the nurses forgot to give me my filgrastim daily injections. Yes, they were a bit behind, and my appointment time of 2pm didn’t start till 2.45. But, by 6pm, when they said I could go, everything was done, I was just too tired to double check my meds. So ... had to make nearly a two hour round trip to the hospital this morning, to pick up the injections which were still in the ward fridge. I am lucky to have a supportive partner who drives me to all my appointments, but even he was upset.

It is difficult for us going through our treatments and it takes its toll on our supportive loved ones too. I’m finding it difficult to deal with how such a thoughtless oversight by trained nurses can have such an impact, and it makes me think that I’m certainly not being the only patient who has been made to feel like this.

Take care and best wishes to all, xx

[Kaisa]

Zits! Pimples! Yellow-heads! Itchy! Red rashy face!

2 weeks after my 3rd EC it started and I look awful - worse than in my teens 45odd years ago! 

Any advice on soothing cooling creams? I usually use MCC or L'Oréal stuff but I think this needs something more. 

Help!

[Kaisa]

Thank you for your reply @Jennet .

I hope your side effects are manageable. My legs were aching on the filgrastin and I rubbed them with pain slayer onitment which helped, along with over the counter painkillers.

My chemo nurses thought I was coping well plus my consultant (only spoken to him 3 times) so they probably pass on info between them on our notes!  No one has mentioned MRI for me but that may happen yet pending on my histology results.

Take care x

[Jennet]

Hi @Kaisa you're right, it's good to have support from 'fellow travellers' and to know we're not alone, although much better if none of us were on this journey! Wishing you well with your next treatment and surgery. I started the docetaxel, along with Pertuzumab and Trastuzumab injection on Tuesday. Starting to feel the effects now - aching tiredness, and sickness (which I didn't really have through 3 rounds of EC). Two more cycles of this and then surgery - mastectomy and lymph node removal. My cancer is ER+ PR+ and Her2+.

I have a lovely oncologist who told me I was doing brilliantly at my last appointment. Quite how she knows that I don't know, as I haven't had a scan since I started treatment. I am due an MRI after round 5 of chemo so we will see then I guess. I would like to get it all removed but apparently this is the best course of treatment for me right now. My surgeon is a little gruff - she is a specialist in reconstruction but at the moment I'm not thinking that far ahead. Ah well, hope all goes well for you x

[Corina]

Hi Kate

Thanks for your message. I’m getting Paclitaxel, taxol for short. I was just reading about it, I think it’s slightly different from Docetaxel. I’m supposed to get it once a week for 12 weeks. Did you get your treatment every 3 weeks? 
Some of the side effects are same as EC but the nurses told me it’s not supposed to make me as sick as the EC did. That’s what I’m hoping for anyway. But I remember my Oncologist saying the EC would get easier on the 2nd and 3rd cycle and that was far from the reality. 
Anyway I hope it won’t be too bad 🙏🏻
Thanks again for your reply 😊 

[katenonip]

Hi @Kaisa 

Nice to hear from you.  I hope everything goes well with your mastectomy. My oncologist changed halfway through and I found the same as you.  Luckily there are many other members of the support team that are so lovely and helpful. Sending you all the best.

Kate

[katenonip]

Hi @Corina 

Lovely to hear from you, sorry to hear that you have been feeling rough.  I hope the lack of news about your blood test means that there is nothing to report.  Do you mean Docetaxel?  I had 3 rounds EC and 4 rounds of Docetaxel.  I was so worried about starting it as I was under the impression that I would feel so much worse.  My partner has called me  a fraud as I feel ok.  The anti sickness and steroids were also halved which definitely helped as the steroids made me feel so awful.  Let me know on the Docetaxel and I will drop you some more info rather than waffling on 🙂

I hope everyone is doing ok this evening.

Kate

[Kaisa]

Hi, glad I found this thread! It's nice to go through chemo with others but at the same time so sad that we have to. I have a mixed cell metaplastic tumour HER2 positive, the cyst was 5cm when I finally went to my GP. Reason for leaving it late is in another post I started "mixed feelings".

I started EC at the end of July, have had the 3 prescribed rounds, last one 2 weeks ago. The side effects have been variable - bone pain from the Filgrastim was awful! I have fibromyalgia too and those symptoms worsened too.

I was supposed to start 3 rounds of Docetaxel on weds but due to various reasons I've declined. Instead my mastectomy has been brought forward and getting that done Oct 14th. After that the histology will determine my next treatments. My consultant is a lovely man but my oncologist sounds strict and cold (we've only had phone contact), the BCN has been adorable!

Anyways nice to meet you as we venture on this unwanted journey together.  

[Corina]

Hello @sharlea and @katenonip and everyone 

I hope you’re all well. I had my 3rd cycle of EC drug last week. By far this one was the toughest round; sickness, fatigue, palpitations which now have turned to pulsating tinnitus. Didn’t sleep a wink Sunday night and had to go back to have some more blood test done on Monday. They didn’t call me with results yet so maybe it wasn’t anything too bad to report. But I think low blood count has something to do with it.
I’m feeling a bit better but the palpitations and tinnitus are really annoying and I still feel quite tired during the day. 

In two weeks time I will start the weekly Tacxol. I’m really apprehensive about this one. I’ve been told it’s not as bad as EC and it shouldn’t make us too sick. I wondered if anyone here has had it and what their experience has been. 
Hope everything’s ok with everyone xx

[sharlea]

Hello Corina,

Sorry to hear about your tinnitus and tase changes. I am waiting for my taste buds to change in a couple of days, seems to be just about a week after the chemo, when fruit tastes bitter, milk is too nasty, water tastes dry (how on Earth) and toast just sucks the moisture out of my mouth. I find spaghetti hoops are good, slightly sweet, moist and bland. Nursery food, I know, but my oncologist said to eat whatever able to whenever possible.

Take care

[Corina]

Thank you for the tips on scalp products, very useful. My skin seems to have darkened a bit and I have some discolouration on my nails. They look awful but I’m hoping all of these side effects stop once we finish chemo. 
I’m sorry to hear you are suffering from vertigo. I once had a very bad case of that which I had to seek treatment. They did an Epley manoeuvre to resolve my vertigo at the time. It’s a movement in the neck which needs to be done by an specialist. Since then I’ve been having on and off episodes but not as severe, so I know how you’re feeling. Try to raise your pillow in bed and move your head slowly. 
Hope you feel better soon and get some relief xx

[Corina]

Thanks, unfortunately can’t take anything for tinnitus. I’m going to try acupuncture and I’ve also got an appointment with a specialist to see what they say. I can even hear my pulse through my affected ear, it’s really annoying. 
I’m glad to hear your palpitations are resolved. Haven’t touched the wine since my smell and taste disorder which is long Covid, taste is like anything but wine and the chemo has made things worse!
I don’t know if everyone else's smell and taste have been affected by chemo? Even fresh water in a glass smells horrid to me. It’s never ending.. 

So I guess it’s just a matter of time we lose the rest of whatever hair that’s left as we go through different cycles. ☹️

Take care xx