January 2022 chemo start

[Confused Meanderings]

Hi

I will be starting cycle four on Monday. I feel quite lucky because it hasn't been too bad. I feel really tired while I'm injecting the filgrastin and I can't eat much. I find soup is easiest, so hubby has been busy creating nutritious soups and freezing them so we have a supply in. At the moment, we have roast tomato and red pepper, fennel, celeriac and scotch broth all sitting in the freezer. My skin is very dry on my face and hands, so I spent an enjoyable morning going around the high end beauty concessions collecting moisturiser samples. Its amazing how generous people can be when they see some one who clearly has no hair and is in a bandana - I even got a creme de la mer sample. I then went to Boots and got the Aveeno moisturiser recommended by my breast care nurse for just a few quid! It does the job - and whilst the creme de la mer is very nice, I don't think its worth the £150 price tag! Usually I can reckon on about 10 days of feeling not too bad, so I try to schedule nice things to do during that time. I have to make sure not to overdo it though, I did a say trip to France in cycle 2 and that was way too much. I learned my lesson! Its nice to see this thread becoming more active and I hope everyone else is doing well.

[bayleaf]

Hi ladies,

Hope it’s going ok for you all, although I know it’s a rollercoaster!

I finished my chemo sessions yesterday, feel ok today but holding my breath as last 2 chemos I’ve had infections needed to go to hospital 🥲 so we shall see.

I feel a little pleased but mixed feelings as there are other aspects of treatment to get on with, radiotherapy next then the hormone treatment for 10 years and Alendronic acid 6 monthly for 3 years, ongoing nerve pain after the lymph clearance etc I’m moaning ! Then I consider how fortunate I am to have all this life saving treatment from our wonderful NHS and I hope I can put this behind me or at least learn to live with it going forward.

I really, wish you all the best of luck going forward, big hugs ❤️❤️❤️

[whyte]

Hi, I’m on 4. Hopefully 5 next week but depending on my white blood cells as they are always too low and delay my treatment even after the 10 injections I do at home. They have doubled them due to my neutrophil levels. I hate them so much. They have reduced my last docetaxel to 80% and carboplatin stated the same but I don’t feel any different still have pins and needles in legs and feet. They were hoping the reduction would help. Let’s see what next week brings on my bloods. Hope everyone is ok. Xx

[marg44]

Hi

i am now on chemo 5 out of 6. My experience has been that I am OK day one and 2 afterwards but once I inject the filgrastin or as some call it Zarzio I go downhill. Feeling tired and with bad back pain. I also get a very sore tongue and cannot eat anything slightly acidic. 
I am on Docetaxel, carboplatin and phesgo.
I am hoping all goes well for my next chemo, I am due to have the op. at the end of May early June. 
I just pray we can all stick it out. 
Hugs to all 

[whyte]

@RestWalkRun 

hi, 

chemo went ahead yesterday after 6 weeks off for bloods it was hard to get back into it. Steriods kept me awake night before which is usual anyway. Given me 10 injections to do at home which will be hard for bone and stomach pain I have. Think I’m going to do  the odd one in my thigh  this time to see if it makes a a change. I have a feeling this one will be a tough one for me. Feeling ok today but day 3 it kicks in usually x

[RestWalkRun]

Hi, 

I am on a daily tablet of Lymecycline (for 3-6 months I think) and was also given some Betnovate ointment which I only used for a little while as didn’t like putting it all over my face. I still get a hint of an outbreak after each cycle (I’ve had 4 of 6) and it seems to appear later each time for some reason. It’s definitely a lot less agressive that the first two times though, and only lasts a day or so! 

Fingers crossed your chemo goes ahead today and is ok. My last one was delayed a week due to low bloods so I really hope that doesn’t happen again next week! 

[whyte]

@RestWalkRun 

Hi,

yes it sounds like same rash although mine didn’t really appear till day 10 my oncologist said it couldn’t be the chemo but I 100% think it was. I’m on docetaxel too . Let’s see if it happens again if it does I might ask for what you had been given. Is it a tablet or cream?. Chemo tomorrow so I will wait and see what happens. I hope not though x

[Shi]

Whyte ❤️ Follow your teams guidance ❤️ They have seen it all before and know exactly what to do, sorry your bloods not recovered enough for chemo ❤️ There has been many in here over the years who’s chemo is delayed a bit till their teams are sure ❤️💪💪 if you feel they are rushing then tell them so they slow down in your appointment ❤️💕💕✨✨Shi xx

[whyte]

@Shi 

thank you. I will give it a try. Nearly finished first jar already as very small. Hadn’t got into my system yet as bloods still too low for chemo try again Tuesday but have a face to face with oncologist Monday as I’m being feeling very rushed on phone lately. Have  a couple of concerns about other things. 
just want to get to the end but they know what they are doing and what’s safe for me. Thanks for advise. X

[Shi]

Whyte ❤️ Don’t think there is a magic fix but the life Mel honey was recommended to me so thought anything was worth a try, I think the reduced chemo helped me too for chemos 2-6 on the neutrophils front 🤞 your start behaving 🤞💕💕✨✨Shi xx

[LMH]

@whyte I have started having acupuncture every couple of weeks in the hope that it helps. The acupuncturist said that it should do but no idea of the science or witchcraft behind it. What I would say is that it does help relax me though. Good luck 👍 

[whyte]

@Shi thank you, I did have 2 steaks last week. I will look into other foods. Hope he reduces mine slightly. Want to get to the end. 
I have just ordered my honey so fingers crossed it works x

[Shi]

I ate a steak a day and had spoonful of life Mel honey after my nuetraphils landed me 6 days in casa nhs after first chemo back in 2017, but that coupled with reduced chemo dose worked for me and neutrophils ok for remainder of chemo ❤️ Don’t think there is magic fix, it’s just wanted to share what worked for me. 💕💕✨✨Shi xx

[whyte]

3rd chemo put back a week as my neutrophil level is too low. Any tips on raising it other than the injections?. X

[whyte]

@nicola2610 

Thank you for your reply. I think this chemo rash can happen with my chemo. Just trying to get the best cream to help plus taking antihistamines. Fingers crossed it goes soon. Hate not covering my head up too but it’s too itchy to have scalfs and hats on x

[whyte]

@RestWalkRun 

Thank you for reply. I was sure it was to die with the docetaxel too as read up online about it. I was worried yesterday as the chemo unit where talking about delaying my next chemo as worried it was shingles. I said it didn’t look like it but wanted a doctor to rule it out which I have done and my gp said it doesn’t look like and and has today prescribed me antibiotic cream. Hope it clears up by next round. 

[RestWalkRun]

Hello @whyte 

I started in December and had a very similar reaction to you after my first two cycles of Docetaxel. The rash started on about day 5 (all over my face, neck and in my hair) a bit like very itchy hives. Then it became much more like acne before clearing up in time for the next cycle! I was prescribed Lymecycline and it hasn’t happened again (just a few rogue spots here and there), though don't know if that’s a coincidence or the meds. 

A friend gave me a silk pillow case which was great at night when my face was hurting. 

[nicola2610]

@whyte  Hi.  Just popped over from the October thread.  I had a rash on my lower arm and hand when on taxol.  It did not have a puss filled centre though, just red and blanching.  I had a lot of tests because it was on same arm as PICC line and they concluded it was taxol reaction.  I did not have a temperature and the rash had not heat to it and was not itchy, just there like a bid red blotch.  

nicola x

[whyte]

Hi,

Has anyone else had a skin reaction with chemo?. I have come out in this really itchy big red puss centred spots all up my neck and around my head. I rang chemo unit and they said it sounds like an allergic reaction to docetaxel as you can get rashes with it. They said they would ring me today to see how it is. I have only had 2 rounds, I don’t want this every time on top of all the other side effects. I looked very attractive for Valentine’s Day 😊 x

[Gracie1703]

Hi 

Yes I'm on 2 weekly EC then 2 weekly Pac four sessions of each , not sure why its two weekly ? Had mastectomy in November.

Second one was much easier side effect wise than the first , was yours ?

I also shaved my hair , thinking it will fall out this week second chemo was Thursday,

Hope you're Ok x 

[Confused Meanderings]

Aagh! So this coming week is the big week with hospital appointments for various things every day, leading up to my first round of chemo on Friday, and I've just noticed that the site of my mastectomy feels swollen. Ive already had to delay starting the chemo because my husband had covid and then I had a rash. I really hope this doesn't delay it again, but I have a nasty feeling it will.

[Nancy1970]

Hope your OK that is so scary 😨 get better soon  🙏 x

[Shi]

❤️❤️❤️Nanny7dar, glad you are home now, rest up and go steady ❤️💕💕Shi xx

[Nanny7dar]

After my second EC ended up in ICU in coma for 5 days apparently very rare 

Won't be having the 3rd but going on to paxitatol very nervous but has to be faced 

Home for a week now but feel rubbish 

[Nanny7dar]

I am 73

[LMH]

@Rolene I am also on 2 weekly AC. I have just finished #4 and now moving onto the next concoction. I found these last 2 exhausting. As you say, only just recovering and then moving onto the next treatment. I’m now on day 6 and made it out for a walk. My worst days are definitely 5/6 as I find I want to start doing things but way too tired. I wore the cold cap for all 4 treatments and unfortunately I have very little hair left. I don’t think I will continue as there is so little gain and gets more painful the more bald you get. 

How is everyone else? all TV recommendations appreciated x

[Rolene]

@Jaynie23  So sorry to hear your bad experience, you know your own body the best.  I wish you all the best and hope you are feeling better soon.

Is anyone else having EC 2 weekly? I am back in tomorrow for round 2 and only just feel like I’ve got over the first lot.

Got my head shaved Friday just gone in anticipation of it all falling out after the next round couldn’t face feeling ill and it all falling out everywhere.

SE so far have been feeling sick, hideous heartburn, hideous bone pain ) think this is from the horrid injections) constipation and tiredness.

how is everyone else doing? All ok I hope.

xx

[Nancy1970]

My scalp is so sensitive as well hair started to fall out day 17 losing a lot got a shirt pixie jan but just getting shaved off this week. Does the scalp pain go once all your hair is out. X

[Nancy1970]

All the very best of luck 👍 x

[Nanny7dar]

Triple negative is I agree 

I had  my first 

[whyte]

@AnnieBee 

Same here not had short hair since in my teens going to take a lot of getting used too. My scalp is sore too. Think I will have a little hat on tonight the little bit of hair I have left is all over my pillow. Had round 2 yesterday . Got the injections tomorrow so not looking forward to them too. 
I said to my chemo unit about the figures and they said to forget about them and think of your chemo has your security blanket. 
Head shave Monday so like you said it’s your identity gone. Just hope it grows back ok. Has to be done but so hard. X

[Jaynie23]

Hi Anniebee

yes it is a big decision and I am sticking with it. Yes maybe down the line I may regret it, I hope not.  All I know is I just cannot face having anymore.  I will be going on Hormone Suppressants once I am feeling better from this 

Jaynie

[AnnieBee]

@Confused Meanderings 

@whyte 

My oncologist also brought up the prognosis for survival % up to 5-10 years. My immediate thought was… What about past 10 years? Is that it? Is that all I should I expect?  I think it’s just an immediate gut reaction when you hear things put so bluntly.  They share statistics with patients so often, I think they become less aware of the impact those words have.  I wonder why 5-10 years is the standard timeframe they use? To hear those numbers definitely hits you like a brick. It suddenly makes you keenly aware of this all being as real as anything can be! 
I am between chemo rounds 2&3. My hair was also very long, and I began to lose it quite briskly about day #14. Like you, I had it cut short by my hairdresser before starting chemo.  Last week, I decided to cut and then shave it myself at home. I think somehow this process is one of the most difficult emotionally.  For me, it’s not so much about the hair itself, but I feel as if somehow I’ve lost “me”.  As if the person looking back at me looks like an imposter. I had purchased a wig ahead of time, also.  I’m 51 yrs old and haven’t had short hair since I was a youth. It will be quite an adjustment even when it begins to grow back. It sounds strange, but I’ve needed an adjustment period to having a head cover on constantly, also. I wear one even at night due to my head being cold. Initially it caused some headache and made my ears sore, but I think that’s because my scalp is still tender.

I’ve got round number three coming up on Wednesday. I’m hoping for a better go off at this time!

[AnnieBee]

@Jaynie23 So sorry to hear about your infection complicating things.  Choosing to continue treatment or not is such a very difficult decision to make. I myself have experienced some frightening side effects after my second treatment, planting seeds of doubt and fear in my mind about my next round, also. I think people who are not experiencing this don’t understand the uncertainty and fear that comes with treatment.  To them, seems as simple as choosing it to improve your odds of survival. But it’s not easy to voluntarily go through a process that intentionally poisons your body with potentially long term health effects.  I understand that to make that choice to stop receiving treatment can be equally as hard, because then you may have doubt down the road.  It is a decision only you can make.  I hope you were able to recover fully.  Maybe after things settle down you’ll have time to think more into it  I wish you the very best. 

[whyte]

@Confused Meanderings 

Hi,

my oncologist did exactly the same to me telling me how many people in my situation would live 5 years. I know they have to tell you facts but it’s so hard to hear. I sat there not saying anything and he then said am I scaring you. Well yes just a bit but I know what you mean you can’t stop thinking about it after x

[Jaynie23]

Thank you x

Jaynie

[Confused Meanderings]

@Jaynie23 I'm sure that was a difficult decision to make, but it sounds like the right one for you. You know your body best. I really send you heartfelt best wishes for your journey.

@whyte I hope all went well today. Thank you for the tip on wigs from Shein, i shall check them out.

@AnnieBee I hope the bone pain and feeling wiped out improve as you go on.

I am so much further behind than all of you! My husband having Covid really delayed things. I've had my initial appointment with the oncologist now and I start my first round the week after next. The oncologist was nice, but perhaps shared too much info. He started talking about my prognosis for a 10 year + survival and I wish he hadn't really. I had very deliberately not asked the question up until then and was doing quite a successful job of not thinking about it. Once I knew, even though the figures were not too bad, I couldn't stop thinking about it. My next appointment is to choose a wig, that's next week. I'm quite looking forward to that! I've already had my hair cut short. My hairdresser managed to cut 10 inches off and I've donated that to the Little Princess Trust along with a money donation from my brothers who dared me £100 to have a short back and sides!

[bayleaf]

@Jaynie23 
Sorry to hear what you’ve been through,I can understand why you’ve made the decision to finish with the chemo given you diagnosis, treatment and how the chemo has affected you. it’s hard to make these decisions but it’s your body, so good luck with the next step in your journey, take care  and I hope you feel better soon, keep us posted how your getting on xx

[Jaynie23]

Hi.   I have been really suffering with my first round of EC chemo and ended up in hospital last week with infection which turned out to be from the Picc Line which was then removed.   I am now home on antibiotics but still not feeling good at all.     I have made the big decision of not carrying on with the other 3 sessions of chemo.   This chemo is not to reduce lump or anything as I had a mastectomy with good margins and lymph nodes were not affected… so was to cross the t’s and dot the i’s so to speak.   I will be going on hormone supressents once I feel better. 

Jaynie

[whyte]

Hi,

My round 2 is tomorrow where is all starts again. Just taken my next lot of steroids. They do make my heart go fast at night but this time I’m increasing my heart medication to be able to deal with it better. Not looking forward to the injections again, the bone pain was bad as I have fibromyalgia too, I found it was worse in my feet and legs for some reason, hard to walk. Been nice these last few days not having them.

I have booked myself in for a head shave on Valentine’s Day, cut my hair short last week as it was really long but now it just coming out everywhere, too scared to even brush it but at least I can start to wear my wigs, scarves and hats I bought. I paid £200 for a nice wig and then I thought I would try the wigs on Shein, I bought 2 after reading reviews. Wow they were only £14 each and they are nearly as good as my expensive one. Definitely worth a look, you can afford to get one for every day at that price. The breathable inside is the ones I got and are fully adjustable. Worth a look. xx

[AnnieBee]

@Ali233 So sorry you’re having such a rough experience. I’ve had some bone pain after the injections, headaches, and feeling super wiped out. After my second treatment I had pain in my upper body where my skin was sore, almost felt bruised all over, but without bruising. It lasted about a day and a half.  It made me quite anxious about going forward, also.  I can’t say I’ve experienced what you have thus far. I hope things get better for you.

[Jaynie23]

Yes I am home now but feeling very washed out.  This has really taken it out of me 😰

Jaynie

[LMH]

@Jaynie23 i trust you’ve made it home now? Hope you’re ok and getting yourself some rest time 

[Ali233]

Hi all,

Has my 1st cycle of TC, Wednesday 26th. I had a reaction to the steroids taken the day before, Wednesday top of my tights, breasts, stomach and inside top of my arms,  were scarlet. Oncologist nurse wasn't too concerned when I pointed it out  . Got my pre chemo antisickbess antihistamine abd more steroids flush then docetaxel followed by flush abd cyclophosphamide.  Continued with my steroids that afternoon and the following day thursday, 3rd day of steroids. My reaction increased 10 fold  scarlet angry itchy hives covering all of my body.  I never slept Wednesday thursday or Friday night, I was buzzing so much on the steroids or was it the chemo, I wasn't sure, my nerves were tingling all over my left face cheek and the nerve pain on my gums  teeth and tounge were hitting in hard all over,  I had also talking my first filgrasim injection on Friday.  Bone  pelvic central nervous system pain hit me hard, I was scared on my own and really just didn't know what was normal or not, eventually I called the 24/7  treatment line , I went to the the  IAU, left a after 12 hrs with sleeping pills for my insomnia.  On Monday I contacted my oncologist nurse to ask if I can for help advise or a tweak. It will be interesting to know how I can be helped to complete my cycles, had anybody else experienced anything similar. 

Best wishes to all

Ali xx

[Jaynie23]

I am still in hospital and feeling fed up!   It was the Picc Line which had got infected and they have taken it out.  I am really hoping they will let me home today as it is not doing my mental health any good

Jaynie

[LMH]

@Jaynie23 how are you feeling now? Hope you’re back home with a cuppa and feeling much better. 

I have #4 AC on Wednesday before I then switch to other cocktail for 3/4 cycles. That will mean I’m half way through chemo. I feel I should be happy about it but just still feels like such a long slog (I will have surgery post chemo). I have booked myself some acupuncture treatments and trying to do some exercise to keep my mind in good shape. 

how is everyone else doing? Louise x

[GW1969]

Hi Jaynie

I had a similar experience. Had my first FEC on 4th Jan was managing well with side effects then on day 15 had cold shivers bit no temperature. As day went on got worse had blood test at hospital and evening temperature of 38.6°. Blood test showed markers up for infection but not white cell count. Had to go to A&E and had IV antibiotics. They couldn't find source of infection and I was like you surprised as I had been so careful. Whilst on doxycycline I noticed my mastectomy scar area bright red and hot. So my pre chemo check was due and saw the oncologist team who said it was infected and delayed my chemo. I assume that was my original source of infection. I've had a different course of antibiotics and the redness has almost gone and I am feeling well in myself. I find out tomorrow whether chemo can go ahead on Tuesday. BTW my surgery was on the 10th of November so no idea why the infection occurred now!

[Shi]

Jannie ❤️Sorry you are having a casa nhs stay on first round, same happened to me and I wanted to run to the hills, but also wanted everything throwing at it. Your oncologist might lower your next dose, my remaining doses were lowered and I was fine after that with the lowered doses. Always decision is yours to make ❤️ But lots of us understand 👭 I think Mai7 another cc and my guardian Angel had 4 or 5 stays during her 8 rounds of chemo ❤️ Also well done you for being vigilant and getting onto you team who got you in ❤️ 💕💕✨✨Shi xx

[AnnieBee]

@bayleaf Thanks, I will.  It’s improved a great deal today. I just found it odd since I didn’t experience any of that after the first treatment. The second cycle sure seem to affect me more, in terms of headache and just general feeling “off”… fuzzy, somewhat foggy, and headache mostly around my eyes. I was mostly down for the first 3 days.  It’s made me a bit more anxious about going back for number three.

[ritap]

Hi Jaynie

my temperate was over 38 too but after the trip to A&E and antibiotics.. a few days later I did pull back!

the nurses are great to give you tips to pull through the day !

🙏🏽 Hang on in there you will see better days soon

😘😊