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Breast Cancer

19 Jan 2020 13:55

I am new to the site .. My Mum had ovarian cancer in 1978 and sadly we lost her 8 months later at the age of 49, I was 22.   Ten years later at the young age of 32 I was diagnosed with rt sided BC. I was terrified but recovered well after partial mastectomy and radiotherapy.  Ten years later to the day at the age of 42 I was diagnosed with lft sided BC, this time treated with chemo and radiotherapy and another partial mastectomy. I thought that was the end of my cancer journey but after being informed I was Brca gene positive I was annually checked. Last year at the age of 63 I was diagnosed with rt sided BC again so a decision for FULL Mastectomy was inevitable.  I have just commenced another course of Chemo in January 2020 and just recovering from severe side effects of the Filgrastim injections, but I am a Warrior and will beat this again.. Ready for number 2 of 15 on 28th Jan ..

Looking forward to chatting to anyone who can offer any advice, tips or if I can help anyone please let me know 

Breast Cancer

21 Jan 2020 14:53 in response to Babs56

Welcome to Cancer Chat Babs although I'm really sorry you're having to go through this a third time.

We have a lot of breast cancer members here so hopefully some of them will be along soon to offer their support and advice.

In the meantime, I just wanted to let you know we're all thinking of you and wishing you all the best with your chemo.

Kind regards warrior Babs :) 

Steph, Cancer Chat Moderator

Breast Cancer

23 Jan 2020 00:08 in response to Moderator Steph

Thank you Steph.. Its always nice to know you are never on your own going through something like this.  There is always someone worse off and If I can help and offer anyone support anytime then I will.  I have always been positive and my friends call me a Warrior as they know I am a strong willed person.  I am feeling good today and now ready for my second cycle on 28th Jan. 

Thank you for your lovely comments and I wish Everyone in this site well with whatever they are facing.

Breast Cancer

23 Jan 2020 00:20 in response to Babs56

Hi Babs, 

I've just read your post and a warrior indeed you are! There is a group of ladies on here, we are all triple negative and keep each other supported with positive vibes and support when the chips are down. But overall we are all keeping our head above water and one step at a time eh 

I struggled with the injections too, I had 4 rounds of AC every 3 weeks. It did help taking paracetamol and anti histamine before the injection, something the nurse told me as the bone pain was something else. Are u taking anything to help? 

At the moment I am on weekly treatments until the end of Feb and no more injections. Just steriods keeping me buzzing for a few days. 

I'm waiting for my BrCA gene result and then will have an opp (not sure exactly which type) and the radiotherapy. A long road but I'll get there and you are proof it won't get us down! 

Thanks for sharing, 

Hugs

Xx 

Breast Cancer

23 Jan 2020 02:14 in response to Mich8

Hi  .Thanks for your message, its great to hear from you. I have been given Morphine for the pain   Never experienced pain like it I must admit but the oramorph, brufen, paracetamol and codeine seemed to shift it . . I am prepared for it next time but have been told today by my Oncologist that I have to have a stronger dose of the filgrastim as I was neutropenic 3 days ago with a result 0.2 (very low) and was admitted to hospital for 2 nights . they need to ensure I don't have the same next week.  I know I will get the pain but I'm ready for it this time now I know how it starts and can treat it before it gets too bad  .. 

Breast Cancer

23 Jan 2020 04:27 in response to Babs56

Hi Babs

 

You are indeed a Warrior Queen and you have certainly faced & conquered many battles. I'm wondering if Babs is short for/code for Boudicca, as she was also an iconic Warrior Queen :) 

I'm also a triple negative girl, and had my first chemo 14hrs ago, so I am very new to this, but can I join the tribe too ? I promise I am a fearless warrior Happy

 

I'm sending love hugs, prayers and positive vibes (and gin, just in case) to you and all our fellow warriors.

 

"May the odds be ever in our favour"

 

M x x x x

 

 

Breast Cancer

23 Jan 2020 06:19 in response to Babs56

Hey ladies

Sorry to hear your level were low Babs, but glad they acted quickly and keeping an eye on your. The injections do work wonders hence the pain eh! Is amazing how they drawbin from your bones marrow to increase our neutrafills. I have a cold now so hope that woke affect my treatment next week. I have my bloods done in a Monday for Wednesday treatment. 

How u feeling now with the pain? I found i was yuck for about a week to 10 days then normal again (well normalish ha ha!)

Hey Wicked angel, ah your first chemo! It's good to get the first one out of the way. How u feeling? Are you on the EC drug aka red devil? 

Hope u doing OK, I had zombie brain for 2 days. Couldn't even read just vegetated in bed or on setee! 

Yeah of course ladies, join our thread. It's called Just been diagnosed - BC Triple Negative. 

Hugs all around xx

 

Breast Cancer

23 Jan 2020 11:04 in response to Mich8

Hi . Hope you are able to have your next chemo on Wednesday . Its horrible having to put off and better to be able to get it over and done with 

Yes the Red Devil is bole and yes too I become zombiefied   Makes you feel you have the onsets of dementia, can't remember names, dates, things I'm doing etc.... I went upstairs last week 4 times before I could remember what I went up for  .Each time I came down and realised it was for my phone charger

I don't have the horrible pain but twinges in my legs now and then   Someone told me about taking anti histamine and I have piriton so will certainly try it next week.. Will let you know if it works for me 

I am sitting here contemplating on shaving my head as my hair coming out in clumps now and a real mess  . I am thinking of putting the video on and my music on full blast and just doing it - a new challenge and a new day  . . Just building up the courage 

Big hugs to you and all the best for Wednesday

xxxxx

 

Breast Cancer

23 Jan 2020 11:45 in response to WickedAngel

Lovely to hear from you Wicked angel .. I was just concentrating on your last sentence about the gin and just wondered when I would feel like drinking one again . We have a cupboard full of different gins and I just can't face alcohol at the moment . A bit like a detox but with the tox missing off as we get lots of toxic substances pumped into us. ..

Hope you are doing well and lots of hugs and good wishes to you xx

Breast Cancer

23 Jan 2020 11:49 in response to Babs56

Thanks Babs, i hope so too.  I'm buzzing with the steriods so hopefully that will keep me going and i'll get rid of it by the weekend before i crash haha!

Ha ha yup thats deff me!  And i cant seem to find words for mundane objects like fridge, windows or where to put things. 

Yeah the antihistamine and painkillers really helped me, i would take ibuprofen, paracetol with antihistamine in the morning with breakfast.  I suffered with neuropathy pain too where your body aches and you get that skin crawl feeling, hard to explain but it hurts just touching your arm lightly. That just lasted  a few days luckily. 

I wore the cold cap for 4 of my treatments, the EC.  I had a major shed still after treament number 2 and starting sporting a few bald patches.  I wore a headband and alice bands to hide them and cut my hair into a bob before treatment. On my first carbo / taxl i wasn't feeling well that morning and couldn't stomach the cold cap so havne't bothered since.  I had to shave my hair off 2 weeks ago as it was coming out in clumps.  to be honest it was quite liberating getting rid of it as the clumps every where was more distressing.  Of course i shed a tear or too when woke up the next morning and looked in the mirror, puffy eyes no eye brows or eyelashes and no hair.  I dont regret it though and glad i shaved when i did.  I've been wearing head scarves and i have a wig but dont wear too often as a bit tight for long periods of time.  so I'll say yeah, go with your instinct and do what feels right for you.  Something ive realised going through this is that there is not right or wrong, we are all going through this together but we are also all unique in our treaments and what works for us Happy

Happy Wednesday!

xx

Breast Cancer

24 Jan 2020 08:49 in response to Mich8

Hi Mich8 great to hear from you . 

I was going to try the cold cap but I had a PICC line inserted and after that straight into Chemo so I just thought 'what the hell' there was no guarantee and why put myself through more trauma of freezing ..

I did it .. Yes shaved all my locks off .. I videod it as was all on my own so when my hubby came home I sat him down with a cuppa and my video and we had a very emotional hour.  I can't believe how soothing and how much better I felt after and even went out to celebrate the next chapter in our lives

You are right the steroids do make you buzz and thanks for the tip about the anti histimines for pain, I never even thought they would be included in pain relief but I took some last night and slept much better and didn't feel half the aches I been having

I have chosen a wig and waiting for my fitting now, completely new style for me.. Hubby wanted me have blonde and although it didn't look too bad I have always been a brunette so will do that one gradual when I feel brave enough . The shave was the bravest thing I think I have ever done and now look like a hedgehog with a number 2 cut .. Ha ha xx 

Big hugs from me and thanks again for your very helpful tips 

xxxx

Breast Cancer

25 Jan 2020 15:00 in response to Babs56

Hi Babs,

Ah glad to hear the antihistamines worked, it makes a big difference esp when you lying in bed and cant move for the pain.

Good on you for going hedgehog!  I felt so much better after shaving my head, i had to do another trim this week and going all spikey and messy with gaps lol!  Of course i do still freak myself out when looking in the mirror, esp in the morning.  Cant wait to look myself again.

I have a cold and chesty cough so feel really rough.  I'm keeping an eye on my temp as went up to 37.3 last night so made me worry. I'm feeling better today just sound like a smoke 40 a day!  never smoked in my life.  My pre-assessment is on wednesday so hope it clears by then as dont want to miss out on chemo next week. 

I have one wig, i went for a crop bob.  Just before chemo i cut my hair and donated it so thought i would try something shorter.  i've worn it a couple of times just for a few hours as it takes a bit of getting used to and can be quite tight on my head.  I'm convinced i've got an odd shape head lol!  I've worn my head scarves a few times, well just normal scaves tied up. My friend bought me a book on how to tie them in 30 different ways.  I was going to practice this weekend but alas rather not, trying not to move so dont cough my lungs out.

Hope you are doing well otherwise and having a relaxing weekend.

xx

 

Breast Cancer

25 Jan 2020 19:42 in response to Mich8

Oh Dear Mich .. Sounds like you may get your treatment put back if you are so chesty as Chemo will make it worse and raise your temp..  My normal temp fund from 37.2 to 37.5 . I ended up in hospital with a temp of 38.3 which lasted a few hours .. You may need some antibiotics ASAP so I would contact them on Monday and let them know how you are feeling .. Don't leave it . You shouldn't suffer .

Yes I am a hedgehog now but I can't tell anyone how soothing and how good it feels, unless you done it you don't appreciate it do you know ..

I hope you feel better soon 

Take care  . Hugs from me xxx

Breast Cancer

3 Feb 2020 13:25 in response to Babs56

Hey Babs,

Thanks for your message, I'm feeling much better well with the chesty cough, just zombiefied today!  I went to the docs on Tuesday with hubby as he had a horrible cough too and we both had chest infections to on anti biotics for a week.  Today is the last day for taking them.  I had my pre-assessment on Wednesday and quite surprised they came back fine for my to have chemo on Friday!  The nurse said its fine as the antibiotics would of been in my system for 72 hours before chemo so doing its thing.  I really thought it would be postponed.  They did say if i felt rough not to come in but was doing much better by friday so i had taxol / carbo, yup double whammy!  Steriods kept me going this weekend but now i feel like a zombie and cotton wool for brains.  So taking it easy indoors today.  Probably did a tad too much this weekend.  so glad to be over the worst of it and now 5 more treatments left of this, cant wait!  Then onto the next step.....

How you doing today?

Hugs xx

 

 

Breast Cancer

3 Feb 2020 13:27 in response to Mich8

How you doing @WickedAngel ‍ 

Are you doing ok after your first chemo?  First is always the worst as often we are anxious! I ended up in A&E as couldn't keep anything down then they upped my anti sickness meds and thankfully all ok after that.  Tad bit of trial and error eh as they dont know how your body is going to react.

Thinkin of you 

xx

Breast Cancer

3 Feb 2020 15:46 in response to Mich8

Hi again 

My first one I had antibiotics with temp but not sure where the infection was which was strange  . Glad to hear they have started working for you . 

I started my second Chemo on 28th and this time started with a different anti sickness 'Emmend' much better to stop the nausea but this time having terrible acid reflux and my gums have started to recede in 3 places  .. I have appt tomorrow with the dentist so really hope it is reversible.  My weekend has been awful with feeling really washed out, emotional, terrible acid reflux pain and feeling quite jittery inside.. So slept for most of it    However PIC flush day today and started feeling slightly better and hoping it starts improving... Just one more of the strong doses again on 17th so can't wait until they are behind me ...

It's really difficult explaining to people who have not experienced this treatment or symptoms so chatting on here does help me knowing that you know exactly what I'm talking about and there are others feeling zombified too .

Not sure what taxol is but if it makes you feel good I want some ..

Good luck with your next 5 . It sounds great to be nearing the end 

Take care xxx

Breast Cancer

5 Feb 2020 15:20 in response to Babs56

Hey Babs,

Yeah sure does knock the stuffing out of you and so nice when you feel relatively normal again.  My anti sickness is Akynzeo and have been fine on this one.  The drugs i am on now are so much better than the first lot, i hardly have any symtoms (err touch wood).  The taxol gives me acid reflux and nose bleeds but not too major and then every 3rd week they combine it with carboplatin that makes me a bit spacey but managed ok this week after Friday.  Yeah i find myself quite emotional once the steroids have worn off.  I'm like a duracel bunny and then next minute no energy and balling my eyes out haha!  We've all gone through it.

Today i went for a walk around the harbour and coffee, was good to get out but rather tired now.  I have an appointment with oncologist tomorrow to discuss my last scan and then being zapped again on Friday. 

Hope you are managing being zombified, most evenings i feel like a right space cadet!

Hugs

xx

Breast Cancer

5 Feb 2020 15:50 in response to Mich8

Hi . 

Just read what you put about taxol and I have that after this one.. I am already having acid reflux and now on omeprazole for that as it was awful . Just hope it stops the acid reflux tho as only started it 2 days ago... I was hoping the taxol was going to be a bit better . 

I am still having the bone pain from the filgrastim and having to take regular analgesics especially in the afternoon but seems to come on a week after the chemo so looks like my bone marrow is working overtime..

I am definitely getting used to being zombified so I suppose I will have to put up with it a bit longer . Do you have this one every week ?

I see my Oncologist next week too just hope my White cells are up do I don't get delayed 

If you having nose bleeds are you anaemic ?

Big hugs from me and best wishes with your treatment 

xx

Breast Cancer

5 Feb 2020 19:34 in response to Babs56

Hi,

It's nice to find a recent forum from other ladies dealing with triple negative. I am only 29 and had 1 chemo session so far. I have been extremely scared as I am suffering with back ache and waiting on results from a CT scan. Did anybody else kind of feel like they weren't in their own body after their chemo drugs. Like I'm there but I'm not really there. 

Xx

Breast Cancer

5 Feb 2020 21:51 in response to SR90

You are describing exactly how the majority feel, you have brain fog and feel a bit zombified for a short while until the effects wear off and then it starts again on the next session..  Its nothing to worry about and try to relax ..

I had terrible back pains and couldn't understand what was happening to me until I was told it was the filgrastim injection to boost your white cells . This makes your bone marrow work harder to reace the white cells and it can give you really bad back pain in your bones .  I take Co cidamol / codeine and brufen for this which does relieve it and also a hot weety bag or I sit with my back on the radiator . It does help . I wonder if this is the pain you may be experiencing as its not nice . 

I did have cancer at 32 so I understand how frightened you must be but I am 63 now so try and stay positive it is the best medicine 

If I can help in anyway please let me know . Chemo is not nice but we can all get through this together with each others support and experience 

I have acid reflux too . I have started omeprazole for this which has helped no end 

Big hugs from me 

xxxxx

Breast Cancer

6 Feb 2020 06:29 in response to Babs56

I havnt had those injections I don't think and the back pain started before I was diagnosed. Yes it is a scary time but it is nice to hear of people who have got through this.

Breast Cancer

6 Feb 2020 08:58 in response to SR90

Hi ..

Really sorry you have the back pain and hope it clears up soon and they identify what's causing it . 

All the best with your treatment and you don't have too many reactions to it . 

I have had my second dose and did cope with it a bit better . I think it makes you stronger and more determined    We never look forward to the next one but it's great to say another one down  . My next is 18th which is the last BIG one and then 12 weekly ones

Good luck and big hugs from me 

xxxxx

Breast Cancer

6 Feb 2020 22:48 in response to Babs56

Hey Babs,

Taxol is deff kinder on my body than the EC, having my next dose tomorrow.  Last Friday i had th combo with carboplatin and still have neruopathy pain today so little fragile but not too bad.  I have 1 more of the combined drug and 4 taxols left Happy

I saw my oncologist today and tumours are responding so looking on track for treatment yay.  Then the next hurdle of the opp, but one step at a time eh.

The nose bleeds are a side effect of taxol as it dries your nose out.  Luckily just had 2 nose bleeds and only bleeds a bit when i blow my nose.  Might have something to do with not having nose hairs too haha!

Yeah good luck with your appointment next week.  How you feeling otherwise?  It was lovely here today, nice to get out and walk.

 

 

Breast Cancer

6 Feb 2020 22:53 in response to SR90

Hey SR90

How you doing today? It is all very daunting and scary but does help chatting to other lovely ladies on here going through the same.  

Yeah my first chemo was rough, quite a shock to the system.  Really felt weird and zombified, it lasted for a  few days then started to feel better.  As you are triple negative too, are you on EC drug?  They may give you injections with those to help your white blood count.

Let me know if there is anything you would like to know?  I'm still going through chemo and then will have an opp and radiotherapy.  some of the ladies we chat to have had the opp first, however they needed to shrink my tumours first, so it does vary and quite personalised.

Big hugs

xx

 

Breast Cancer

7 Feb 2020 00:37 in response to Mich8

Hi Mich

So glad to hear your tumours are responding to the treatment . Great news, keep it up 

I am feeling really good today and have my grandson staying tonight . Its lovely cos I get lots of cuddles . 

My cancer was completely removed as I had mastectomy but as I had cancer 3 times now they advised chemo to be sure to be sure so had to go with it .  

I keep looking at myself and feel like I resemble fester out of the Adams family Happy . but I have a couple of lovely wigs and no one can tell they are

I do have to have another 3 ops for reconstruction so got that to look forward to when I finished chemo 

Weather is getting a bit warmer so I intend going for a walk tomorrow and get some fresh air 

Big hugs from me xxxxx

 

Breast Cancer

15 Feb 2020 00:06 in response to Mich8

Hello Mich8

 

Thank you for thinking of me and sorry for my slow reply.

My first chemo went ok, the nurse who performed my procedure (it all had to be hand syringed into the canula/saline) was really nice, calm and patient. She explained everything as we went along.  So that was very reassuring. It knocked the stuffing out of me for about a week and then I had a couple of good days. But I caught a viral respiratory infection and had to be admitted to hospital. It was quite scary just how ill I felt and how quickly it all escalated. But the Bexley team were fabulous and had me in IV antibiotics in no time at all. It nearly jeopardised my 2nd chemo, as my bloods were only just in range. So I am now having 5 days of a tummy injections to help my white blood cell count. So with that and the antibiotics, the 2nd chemo seems to be going better. 

My scan is on Tuesday morning, so I am praying hard for a positive result, though it actually feels like its got larger and its consistency/texture changes day by day, which is really weird. 

I also did a 'sponsored hair loss' for The Little Princess Trust, so far I have raised £825 and as my hair was start to go (and it was matting a little, as I have long curly hair) my hairdresser shaved it all off. So 4 huge 22" plaits are on their way to The Little Princess Trust, to make wigs for children with cancer. It felt good to do something positive for others Happy I now own a long & curly 'brown sugar' wig in 'oil slick violet' (purple n blue) which is fab. And most people seem to think I've just dyed my hair, which is quite funny Happy Plus 3 of my friends are also having their haircut for The Little Princess Trust, which just fills my heart with love and pride. 
 

So, that's me all up to date, how are things in everyone else's world ? I pray you are all doing good, and are strong in health, heart and hope x x x x

Breast Cancer

18 Feb 2020 00:19 in response to Babs56

Hi Babs,

I am in total awe of how you are managing this terrifying disease. You sound so resilient and strong. I truly want to be like the way  you are about stuff but I am in fact pretty much a weakling!! 

I was diagnosed in October 2019. Grade 2 Lobular breast cancer (left side) Not in lymph nodes and an Onco score of 9. Lots to be thankful for but I  don’t always see it like that in all honesty. Cancer isn’t for sissy’s is it?  

I started radiotherapy last week so now done 6 sessions and 9 to go. Did your skin get burnt and did you have to do the special  breathing to ensure the Beam didn’t touch your heart or your lungs? I am trying to keep my life ‘normal’ whilst having treatment. I am 67 and retired but I know many people need to work so they don’t get a choice about how they manage the radiotherapy. 

Sweet dreams. I of course wish you well.

Kebbs x  

 

 

 

 

Breast Cancer

18 Feb 2020 23:19 in response to kebb

Hi Kebbs 

You are not a weakling at all it is a very big life changing experience and we all go through lots of feelings about why, will I cope, what am I going to do, what will happen to me and more.. I was 32 when I had my first and just had the radiotherapy.. No it didn't burn my skin.. I bathed in water only and used simple soap lightly as I was told and didn't have any burns.. My second cancer was at 42 and had both radiotherapy and chemo and used the same again.. No signs of any burns.. They didn't do any special breathing patterns only breathing in and holding your breath when the light went on and the buzzing started.. I was OK with that one.. It was my first I had problems due to how it was done all those years ago in 1988.. The technology and equipment is so much more advanced now....

This is my third cancer at 63 and I don't have to have radiotherapy as you can only have it once apparently in one area but I am going through chemo, which is bearable now I know how to manage my nausea, bone pain and acid reflux...

I wish you well with the radiotherapy.. My only side effect I had was it made me tired so used to go bed when I got home to chill and sleet p for an hour.. 

You are not supposed to use perfumed soap, spray, bubble bath or anything scented as it could affect your skin.. 

Take care and big hugs and positive thoughts from me 

Babs xxxxxx

 

Breast Cancer

18 Feb 2020 23:35 in response to Babs56

Thanks for the info Babs. It’s very helpful and reassuring. 

So far no sign of burns but I have 8 sessions to go. So we will see. 

The breathing IS difficult for me for some unknown reason. As soon as I get up on the table I can’t breathe?!! Anyway the team there are so supportive. In the end I calm down and manage it. Ridiculous going’s on really.    

I feel this site is such a big help.Very informative about specific situations and treatments  but more than that. People generously saying how it is for them warts and all. It’s very heartwarming. Babs you are a star.  

Sending healing love to one and all tonight. We ARE worth it and we WILL get there. 

Much love,

Kebb ❤️

Breast Cancer

19 Feb 2020 12:57 in response to kebb

Hi Kebb 

So glad you haven't got any burns from your radiotherapy and it's really helpful that the staff are understanding of your breathing.  

It's not a nice time for anyone and everyone deals with different side effects and anxieties.. 

I attended a Health and Wellbeing Event last week for Cancer patients arranged through our local hospital by the Douglas Macmillanthat focuses on different topics.  I am not sure where you live but I am sure other hospitals will run similar things and I found it really helpful, supportive and it was nice to talk to other patients too going through the same...

The hospital area I have mentioned is Staffordshire area. 

Take care and good luck with the rest of your treatment.. 

Hugs from me 

Babs xx