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January 2022 chemo start

170 REPLIES 170
bayleaf
Member

Re: January 2022 chemo start

Hi @AnnieBee ,

sorry I thought I replied to you but it’s disappeared, steroids gone to my head!

I’ve had something similar but just pain in my chemo infusion arm which started during the week after the treatment.It runs from my inner elbow to my wrist, no bruises and it’s ongoing, I mentioned it to my Chemo nurse who said this can happen with EC.

I think you should get in touch with your team to check it out just to be sure.It will put your mind at rest.

Take care 

AnnieBee
Member

Re: January 2022 chemo start

One day after my second chemo treatment and my arms and sides down to my waist are sore. It’s not muscle soreness, but it’s even on both sides and my skin just feels tender, almost lightly bruised, with no bruising visible. Anyone experience anything like that?

Ali233
Member

Re: January 2022 chemo start

I had surgery on the 21st of December

Lumpectomy and auxiliary lymph nodes clearance, got my first chemo TC first of 4 cycles yesterday, I decided to cut my hair shirt beforehand. Just braved it and took control to decide when my hair was coming off, actually went to the local barber £12 absolute bargain  number 6 short back n sides cut on top, and it's fabulous,  should have done it years ago  . But that's just me lol kinda sticking two fingers up to cancer and not waiting for the casting. Its actually boosted my self esteem and mental health.  Not a decision I understand for all but it has been good for me x

bayleaf
Member

Re: January 2022 chemo start

Hi. 
Thanks for the info @Rolene  about the EC and AC. Out of interest I had the injection changed from the 7 day to the one off one when I told my oncologist about the side effects and back pain, by the way like @AnnieBee I also took an antihistamine, not sure it helped though.

Feeling ok today although taking it easy.

All the best x

 

 

Rolene
Member

Re: January 2022 chemo start

@AnnieBee  EC is just a different combo epirubicin/ cyclophosphamide and your is AC (Doxorubicin/Cyclophosphamide.  I suppose different types of cancers require different regimes.

im getting EC every 2 weeks with the filgrastim for 7days which seems long to me by the time I’ve finished those I’ll be nearly back for another cycle.

It’s a minefield so many different treatments going on.

also had my look good feel better workshop today it was really good I’m very excited about the goodie bag that gets sent to you, you should all sign up.

 

take care xx

AnnieBee
Member

Re: January 2022 chemo start

@bayleaf  Can I ask what “EC” is?  I see a lot of people in this thread. I’m assuming it’s a combination of chemotherapy? My first therapy is called dose dense “AC”. I’m assuming just different combinations. I had one lymph node positive. For white blood cell stimulation, I get pegfilgrastin injections one day after every two weeks. I had a bit of bone pain in the back of my hips and thigh region for a day, but able to control it with Tylenol. They told me to take Claritin starting 2-3 days through 5 days after because it seems to help with that. 🤷🏽‍♀️ Not sure how that helps or if it would help with other similar meds, but maybe worth asking.  
I just got my second cycle completed this morning. Sitting on the couch, resting up, drinking lots of fluids to ward off the headache that is starting. My hair loss started suddenly, and is really happening rather quickly. I also decided to forgo any attempts at cold cap because in my opinion it doesn’t seem to work all that well for most, but I certainly don’t discourage people who want to try!  Everyone’s journey is certainly different.  Best to you!

bayleaf
Member

Re: January 2022 chemo start

Hi everyone,

I had my first EC on 4th jan some ups and downs during the first week and a half, mainly tiredness, breathlessness, aching bones and on day 9 an episode of more acute pulsating back bone pain which I believe the daily mini white cell injections are the cause, although a scary episode I managed with ibuprofen then the pain settled after about 18 hours.

This last week Ive feeling ‘back to normal’.

So I was a little less anxious going for my 2nd chemo yesterday which was a bit easier as I knew what was coming.

I’ve had the cold cap both times, my mid length hair has been falling out significantly the last 3 days so not sure how effective it will be, I guess I’ll know soon.The cold cap is a bit painful for about 15 mins but then you forget it’s on, so worth a try. I took paracetamol before I went in.

@AnnieBee I’m at a similar point as you, had lumpectomy, then margins had to be cleared and 7 lymph’s involved, I’m having three EC then three Docetaxel, then radio therapy then bone infusions ( zolendronic acid) and hormone therapy for 10 years,it’s a bit of a marathon! Good luck today, I’m thinking of you x

Got to say it’s all a bit of a roller coaster as you all know! Its so helpful to read all your posts which give me strength and knowledge of what to expect, thank you.

Good luck to everybody on here, stay strong 🌻🌸

GW1969
Member

Re: January 2022 chemo start

The bad taste in the mouth is one of the side effects that slowly reduces. I found skittles and wine gums were nice to eat but the taste comes back eventually. My chemo nurse basically said its something you just have to put up with. 

whyte
Member

Re: January 2022 chemo start

@GW1969Y

Yes I’m on omoprozole too. 

Any tips or the taste in mouth, I’m cleaning my teeth about 3 times a days and using mouthwash. Even tried cleaning tongue with sodium bicarbonate. Used salt water too when had the ulcers. X

GW1969
Member

Re: January 2022 chemo start

Hi I have been recommended to take omeprazole for heart burn. My oncologist said the steroids you take at the beginning cause the acid reflux. Your oncology team or GP should be able to prescribe them for you. You take them daily before the symptoms start and are very effective. 

AnnieBee
Member

Re: January 2022 chemo start

Trying to learn how to navigate the discussion board and make a new post rather than reply to a previous. Maybe that’s not possible? I made another post and it created a separate thread. 😞

I was diagnosed with Invasive ductal cell carcinoma (ER/PR + HER2 neg) back at the end of August. I met with oncology, who referred me on to surgery first. I had a lumpectomy surgery on Oct, and a revision surgery in Nov after they found the margins were not clear. I had two small tumors that were in a very nontraditional location under my breast, and more so seem to be a part of my chest wall. I was hoping to dodge the chemotherapy bullet, but after extensive tumor cell testing, I was told one of the tumors was at high risk for recurrence/metastasis. So, here I am. I have completed the first of four rounds of doxorubicin and cyclophosphamide.  After that comes 10 rounds of Taxol, followed by radiation therapy.  I’m 51 and have been healthy otherwise. This is scary stuff.  I’m due for my second treatment tomorrow, and my counts are good so far. Other than some headache and leg pain after my pegfilgrastim, I’ve felt pretty good. I’ve noticed the soreness on my scalp, and I’m beginning the process of hair loss now.  Looking forward to connecting with others traveling this road, too!

AnnieBee
Member

Re: January 2022 chemo start

Curious as to what “EC” is?  Is it a specific combo of chemotherapy?  

Shi
Community Champion
Community Champion

Re: January 2022 chemo start

Princessleia ❤️ Check with your team but I’m sure Dizzybrummie from my Oct17 gang used gaviscon. I’ll hopefully let you know when she gets back to me but might be worth quick call to your team in the morning to see what they say or can give you ❤️💕💕Shi xx

Rolene
Member

Re: January 2022 chemo start

@princessleia29 can your team or go give you anything for your reflux, I was told today if reflux happens to give them a call.

@Confused Meanderings that’s good you have your appointment and not long to wait now.

so first EC this morning went fine without drama (1st for me) not cold capping so it will be interesting to see how long I can hang on to my hair.  Chilling on the couch now watching tv with the dog, just a bit of a fuzzy head so far. 
xx

Confused Meanderings
Member

Re: January 2022 chemo start

At last! I have my appointment for my initial meeting with the oncologist. Its on Friday.

I'm loving the cold cap photographs! I've decided not to use it. I don't really want to deal with the discomfort, even if its only for a bit. I'm going to get my hair cut short and as it is quite long, I'm going to donate the lengths to the Little Princess Trust.

@Jaynie23 I would definitely talk to the hospital.

@princessleia29 and @whyte  I know this sounds a bit like an old wives tale, but have you tried Refreshers sweets for reflux? I don't know about reflux caused by chemo, but it definitely works for ordinary reflux!

@LMH Keep your chin up and look after yourself.

whyte
Member

Re: January 2022 chemo start

Hi,

@princessleia29 

I have only had one round so far but that was my symptom of the chemo. It seemed to start from 2.30/3 am bad burning in the throat. I had some gavisvon and water which helped.

The also got thrush and white ulcers in the back of my throat. The doctor gave be what they give for babies called nystan. I thought that’s never going to help but it did. I still have the very bad taste in my mouth though which makes everything I eat and drink taste horrible, I expect everyone is like that. 
I’m having my hair cut short today but thinking it may not be long before it’s shaven off anyway x

LMH
Member

Re: January 2022 chemo start

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@princessleia29i thought I would also share a photo of me in the cold cap. I have worn it for 3 cycles now and was really hoping it would work, however, i now have very little hair left. I am going to keep going for 1 more cycle and then make a call on whether to continue. This cycle i am so tired and spending most of my time on the sofa or in bed. 

princessleia29
Member

Re: January 2022 chemo start

Hi @Rolene @I’m glad you like my cold cap fashion! I have just been up half the night with acid reflux this time, but it could be a migraine symptom, so it may not be the drugs it’s hard to tell. 

AnnieBee
Member

Re: January 2022 chemo start

Funny you mention this. I am at day 13 after my first treatment, and the top of my head is beginning to get sore just as you described. i’m noticing an increase in shedding.  Not looking forward to this…

 

AnnieBee
Member

Re: January 2022 chemo start

Hi. I completed my first chemotherapy treatment two weeks ago, and will go back for my second of four rounds on Wednesday. The thought of chemo terrified me more than any surgery ever could, also. I’m terrified of all the potential complications, and long-term effects. I must say, other than a pretty significant headache behind my eyes the first day or two afterward, I was pleasantly surprised to have minimal nausea. I’m at day 13 now, and beginning to notice some increase in hair shedding. I know the treatments get progressively harder on the body, so my anxiety levels are high.  After that first treatment, nothing sounded good to eat and I stuck with mostly salty foods and lots of fluid. Just worried about what the coming weeks will bring. After the first four treatments, I switched to another regimen for 10 weeks. This will be followed by radiation. I am in for the long-haul. 

Shi
Community Champion
Community Champion

Re: January 2022 chemo start

Jannie, do please call your unit, you are heading into nadir part of your cycle probably and you might need antibiotics for your throat, also remember to check for thrush mouth everyone, it’ll need antibiotics get fluconzole and not fobbed off with drops from your teams. Anosol and baby wipes will help bum from the constipation. 💕💕Shi xx

Rolene
Member

Re: January 2022 chemo start

@princessleia29  You are rocking that cold cap 👍 I’ve decided not to try it i gat awful headaches thinking about it, I hope it does the job for you,

how are you feeling after your 2nd cycle? any major side effects I need to watch out for?

xx

princessleia29
Member

Re: January 2022 chemo start

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95BF624A-AE33-477A-B355-E1A6221AC137.jpeg

Hi @LMH @my period arrived a week early just a day after chemo with my first round! I was quite surprised (I’m 47) and I have only recently come off the pill so it could be that or the chemo. Today I had my second EC and it was a lot quicker. I have attached some more glamorous pictures of the cold cap! I have noticed a little hair loss but that’s normal apparently so I hope it’s working!

T1991
Member

Re: January 2022 chemo start

@Jaynie23  I had my first EC on Monday 17th no major symptoms apart from being constipated for 4/5 days, i had taken the cosmocol every night from day 2, I spoke to the nurse and she said they’ll be able to give me a laxative the same day as my next treatment to stop getting bunged up to start with (lovely I know) might be worth suggesting for you too. Hope everyone else is okay and managing the best they can 😊

Nanny7dar
Member

Re: January 2022 chemo start

Hi was diagnosed with Triple negative invasive lobular cancer in October 

Had my first EC on 31st December and second due tomorrow 25 th 

I did have a sore mouth throat like you and  ulcers  and hair went very rapidly from day 17 .Nausea and tiredness. 

Good they are monitoring  you I would always ring for advise 

 

Jaynie23
Member

Re: January 2022 chemo start

Hi All

I have had my first chemo last Wednesday.  Was EC Chemotherapy.   Can I ask has anyone else experienced any issues with the bladder as in having an accident not getting to the loo in time?   I am also on Filgrastim injections for 7 days.    I have also had constipation from the drugs and took Movicol but now gone the other way slightly…Have had some bright red blood showing on tissue so hoping that will be from the constipation/then to a bit loose.   Have asked helpline who has just said to monitor at the moment.   Sorry for the graphical explanation! I am a real worrier 😢 Also developed a slight sore throat this morning when I swallow (done lateral flow…is negative) no temperature.   

Hope everyone on here managing with chemo okay

Jaynie xxx

LMH
Member

Re: January 2022 chemo start

Thanks you @GW1969 @tweenie for your replies. I haven’t specifically had a conversation about this and just assumed it would stop. Good to know it’s happened to others too. I will mention to my oncologist on 31 Jan. Louise x

tweenie
Member

Re: January 2022 chemo start

Hi both, 

I have one more session of chemo left I started in September, after my 2nd chemo I had quite a heavy period that lasted a few weeks, then nothing after. I spoke to my onco & she said sometimes it’s your body giving one last push before everything stops, hope this helps xx 

GW1969
Member

Re: January 2022 chemo start

Hi Louise 

Interesting you have raised this. I am 52 had my first chemo 18 days ago and started my period yesterday. My oncologist told me the chemo would stop my periods and due to my age (I really should be in menopause by now) they would probably not return. I will ask her when I have my appointment on Tuesday. 

Gerry

 

 

LMH
Member

Re: January 2022 chemo start

Wishing everyone well and positivity going through this

I have a question about periods. I assumed that the treatment may stop the periods (I’m 46) but was surprised to find that wasn’t the case this morning. Anyone else?

louise x

Rolene
Member

Re: January 2022 chemo start

@louby_lou69 Every 2 weeks, restarting on Tuesday, xx

@Confused Meanderings hope your Husband has got over the COVID, and you managed to dodge it, hope you will hear soon regarding your oncologist appointment it’s so frustrating waiting for things to happen xx

Nancy1970
Member

Re: January 2022 chemo start

Thats awful hopefully 🙏 it will get better and u get through this ❤ 

Confused Meanderings
Member

Re: January 2022 chemo start

Oh @Rolene you really have been through the mill! I hope things go a bit more smoothly from here onwards! @LMH I hope you manage to avoid Covid! My husband has just got over it and it wasn't easy arranging separate parts of the house to be in! I've been anxious because I still haven't had my initial consultation with the oncologist yet, let alone actually starting chemo, but I ended up being grateful because at least I didn't have to worry about having a suppressed immune system!

I'm hoping the long awaited appointment will be arranged soon. I know my case is being discussed in the Oncology team meeting tomorrow. I was feeling a bit forgotten about, but I asked my GP to contact them to ask what was happening and within 15 minutes of that phone call, the hospital were in touch to ask me to come in today for a quick check up. The redness I had last week turned out to be an infection in the wound site. I've had double strength antibiotics and its more pink than red today. The breast care nurse seemed happy with how its healing and said that she would tell the Oncology team meeting that it was sorted. So I'm feeling much happier now.

@louby_lou69 I'm glad all was well last week. Onwards and upwards!

louby_lou69
Member

Re: January 2022 chemo start

@Rolene 

I suppose your safety is what's important. At least you can have the EC which you'll manage with, are you having it every three weeks?

Hope the remainder  of your treatment goes ok

Lou x

Shi
Community Champion
Community Champion

Re: January 2022 chemo start

Rolene ❤️ Because I had a reaction on my 2nd t my onc put be back on fec for last one so it was 3 x fec, 2 x t, 1 x fec. Apart from my first one they were all reduced doses too. Keep focused, keep 💪 💕💕Shi xx

Rolene
Member

Re: January 2022 chemo start

So I’ve had a tough few days, had my video call and no more paclitaxel or the other version abraxane,  I was so upset I’d convinced myself there is no point in carrying on with only half the treatment.  Just getting the 4 cycles of EC.  
last night had a long chat with my onco nurse, and she went through everything in detail so I could understand,  

I have had a severe allergic reaction to paclitaxel my blood pressure went so high they were worried I’d have a stroke, I went into respiratory distress, which sent me into a seizure, and my heart rate shot up to 140. So safe to say Paclitaxel does not like me,  I have no other allergies so this is a complete shock.

don’t worry though this is extremely unusual, and most people do absolutely fine on it.

so first cycle of EC is due next Tuesday I pray that will go smoothly, triple negative is a complete arse! 

LMH
Member

Re: January 2022 chemo start

@lexy i am curious about the cold mittens on hands and feet too. The oncologist wasn’t particularly supportive when I mentioned it, but didn’t really give a reason why. 

this weeks challenge has been my 4 year old daughter getting COVID from school. We agreed that I would isolate myself upstairs to avoid her and my husband altogether, with him dropping food to the door. Although very boring up here, seasons 1-4 of trashy Selling Sunset have made it easier going. I have #3 chemo tomorrow and really wanted to avoid a delay if at all possible. 

I am sorry to hear some of the scary reactions being described in the thread below. Good to know we have emergency contact numbers if needed. This is such a rollercoaster 🎢 hang on in there xx Louise 

 

Rolene
Member

Re: January 2022 chemo start

@louby_lou69  That’s great, bet you were very anxious as it was going in. Glad it all went well for you.  I was looking at my patient access thing with the gp’s and it’s now on there under Allergies, 3:45 is the appointment time.

xx

louby_lou69
Member

Re: January 2022 chemo start

@Rolene Hope you get some answers. My infusion went ok last week (I missed a week whilst they reviewed my case) I was given steroids, antihistamine and hydrocortisone and I had it over two hours instead of one. I had no reaction at all. 

Rolene
Member

Re: January 2022 chemo start

good Morning everyone, hope you are all doing ok.

So today’s the day of my video call to find out what’s happening with my chemo, after my disaster with paclitaxel.  It’s been a long week of waiting.

xx

Shi
Community Champion
Community Champion

Re: January 2022 chemo start

I sucked ice lollies while having fec took in cool box with those ice pack things to keep them frozen. Do watch out for thrush mouth it has happened to lots of us during chemo and will need antibiotics or if you get thrush elsewhere during chemo too or cystitis caused by the chemo or your wee burning, phone your rapid response it will need antibiotics not just from you local boots treat yourself 💕 keep vigilant and keep safe 💕 remember chemo is extra dr on inside 🥊🥊🥊🥊💕💕Shi xx

princessleia29
Member

Re: January 2022 chemo start

B4531553-901E-4350-9FB8-EA0FCC6DDA4E.jpeg

Hi all and @Shi @thank you for being so caring! I got checked out and I am ok it’s just inflammation of my vein, and it’s not DVT. I’ve been given some cream as it’s superficial and I’ve put a picture on here in case anyone is curious! X 

lexy
Member

Re: January 2022 chemo start

Hi all 

 

glad you are getting checked out, definitely worth getting their opinion on any changes. 

I had my first chemo EC on Thursday I’m day 3 today and feeling ok- bit tired and nauseous but doing ok. Hopefully they can look at other anti sickness drugs for my next round as day 1 wasn’t pleasant 🤣 

are any of you using cold socks and mittens to reduce I think peripheral neuropathy ? Or I heard of chewing  ice chips to help reduce mouth ulcers?  

good luck everyone- in this together x 

Shi
Community Champion
Community Champion

Re: January 2022 chemo start

❤️ Glad you’ve rung and checked hopefully the nurse advised you to look out for any changes between then and your appointment tomorrow, glad to hear they getting you in to give you check over in the morning ❤️ your teams do appreciate you being vigilant and checking with them ❤️ it helps them get you safely through ❤️💕💕Shi xx

princessleia29
Member

Re: January 2022 chemo start

Hi @Shi I have called them but they don’t seem too worried. The chemo nurse has asked me to come in tomorrow morning after 9am x

Shi
Community Champion
Community Champion

Re: January 2022 chemo start

Princessleia do phone your rapid response number and advise them if everything you have just put down on here just to ensure it is not a blood clot 👭 always best to check with them and check again you are doing right to be vigilant ❤️ Keep safe 💕💕Shi xx

princessleia29
Member

Re: January 2022 chemo start

Hi all I hope you are all doing ok. I have a weird symptom I would like to run by you all! My arm has been gradually hurting more and more, (forearm) which is the arm I had chemo on. I rang the hospital and they said it sounded like an after effect of the Epirubicin, as it is not hot or bruised. I'm just a bit worried about it as it is a bit swollen. Has anyone else had this and does it pass quickly? Thanks x

whyte
Member

Re: January 2022 chemo start

I had my first chemo today and it went better than expected considering I didn’t have any sleep last night due to the steriods putting my heart rate up. Found out today they are increasing them to 5 days instead of 3. But all in in I’m proud of myself how it went today let’s hope the side effects will not be too bad. X

Jaynie23
Member

Re: January 2022 chemo start

Hi,   I was meant to start my chemo this week but have had to postpone it to next week as my hubby woke up on Monday morning with bad vertigo and couldn’t get out of bed so couldn’t cope with starting chemo and also difficult to get to the hospital with him not being able to drive me.   He is getting better now hopefully so will go ahead next week….. starting to get nervous about it again now.   How are all who were starting their chemo this week? Hopefully all went well.   I am due to have Picc line fitted on Monday and Chemo on the Wednesday.

 

Jaynie xx

T1991
Member

Re: January 2022 chemo start

@lexy @LMH emotions are off the charts but somehow keeping it together, my children are 12,9, 10 months and due in March 😊 they are what’s keeping it all together, being strong for them. I start my first round of EC on Monday gonna pack a bag of bits and bobs to take with me today. I hope your both okay, when do you start? Xxx