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November 2019 Chemo Starters

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Re: November 2019 Chemo Starters

Hi Daisy

 I'm from the Nov starters forum as well  and in a similar position to you, I'm triple neg and although no node up in my chest I have one under my armpit. I've had EC x 3 and Carbo x 3 and Pac weekly x 9 , I had my EC first , like you I've not had surgery yet and again like you my white blood cells keep dropping on the carbo and Pac  it happened again this week that's the third time for me  .

I was given an injection last time to boost my white blood cells which worked but it happened again , it's really frustrating because it means treatment getting out back . I still have 4 weekly pac to have and 1x carbo so I know how you feel especially now with covid etc , however I notice your pac and carbo are being given first , that's a positive in my book as I think Ec seemed to be kinder on my blood cells and bone marrow ( where all blood cells are made) in my mind get the harder treatment over with first maybe your onc will give you something to boost your immune system , our oncologists are going to be as careful as they can be with us and my advice is to follow what the professionals say my fav saying at the moment seems to be " it is what it is" we have been dealt a tough hand but we will get through this , I have found the forum a great source of support and information , keep safe and I'm more than happy to share any info I have with you πŸ’• kim c x x x 

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Re: November 2019 Chemo Starters

Hi Daisy

I dont mind you asking anything I think sometimes the best people to talk to are the ones that are going through this horrible experience who are probably the ones that understand more. The node in my chest showed up on the scan as 11mm where a normal node is usually 10mm  I think they have to tell you about anything out of the ordinary that's shows up. It did freak me out a lot at first but my oncologist didn't seem to perturbed and did say that if it was anything that the chemo could get it. My sister knows two people with BC who had an enlarged node. Sorry that you haven't been to well from October but if its any consolation I was Ill with my first 2 chemos  but they lowered the dose which did help. My BC was lobual between grade 2 and 3 and 1  1/2 lymph nodes involved. I had a lumpectomy first, but as the tumour was found to he 7cm they then decided to do a mastectomy a week later so operation first then chemo. I had FECT so slightly different to yours. I haven't had any chemos cancelled but a few of the ladies on the November forum have and in sure one of them will respond to you, with more information. if you dont mind ladies πŸ™‚. All the ladies are lovely on the forum and if you have any more questions I'm sure they would be happy to give you any advice. I hope you are feeling a little bit better soon and you chemo goes ahead. We are all nearly at the end of our chemos and some of us have finished so it is doable. Keep your chin up and take care, always happy to chat if you have any more questions  sending hugs πŸ’•πŸ’•

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Re: November 2019 Chemo Starters

Hi Chris

Hope you dont mind me asking as i havent come across any one else with a lymph node in chest. 

Im 48and diagnosed in january with Tnbc grade 3 with x3 lymph nodes affected. The one lymph node is necrotic and pushing on a nerve in my chest given me dreadful pain

I have been poorly since october 19 and numerous visits to gp and AE resulted in diagnosed with chostocondrotis. So it was a shock to find diagnoses of breast cancer as i was only sent to be checked as a last resort. Im currently undergoing chemotherapy  paclitaxel and Carboplatin x4 cylcles then EC for 4 cycles then surgery.

Did u have chemo prior to surgery ? 

My chemo last week was postponed due to low WBC and this week i need to have repeated bloods done on wednesday to see if treatment can go ahead.

Any advice is greatly received. 

Love Daisy xx

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Re: November 2019 Chemo Starters,

Have you had your chick down faces yet 😁 don’t immac it off it’ll settle you just look a both chick down face for a bit like a fine fluff on face 😁😁it’s all good πŸ‘πŸ‘πŸ’•πŸ’•βœ¨βœ¨Shi xx

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Re: November 2019 Chemo Starters,

I haven’t had any more growth yet, but what little there is is definitely white x 

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Re: November 2019 Chemo Starters,

Mine is def growing back Lisa. Soft blackish soft stubble. Def still patchy but takes away some of the pale skull!

Xx

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Re: November 2019 Chemo Starters,

My hair is growing back WHITE not even grey !!! I was mousey brown before with highlights but its def white and is looking curly unless that me chemo hats squashing them lol 🀯

KC xxx 

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Re: November 2019 Chemo Starters,

Thank you Shi 😊 x

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Re: November 2019 Chemo Starters,

hi Lisa get the red dot shampoo bar from lush and extra dark Jamaican back castor oil to rub on bonce 😁😁just check with unit you are ok to use because of ingredients in them so nothing interacts with any treatments you are still having and your hair will be covering a la sinead O’Connor in weeks πŸ‘πŸ‘ hope this helps πŸ˜˜πŸ’•πŸ’•βœ¨βœ¨Shi xx

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Re: November 2019 Chemo Starters,

Oncologist yesterday said that I will be having monthly injections from around 1st April to shut down my ovaries, plus letrozole tablets daily.

Having just read up on the side effects, I’m not really looking forward to it.

Anyone else ER+ know what hormone treatments they will be getting? X

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Re: November 2019 Chemo Starters,

Is your hair still growing Helen? (Love to see a pic!)

I’ve no signs of regrowth yet... Anyone else?

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Re: November 2019 Chemo Starters,

Hi All

 

My hair is growing back...the dark hair first. I was going patchy grey (about 25%) before chemo. I found my grey fell out first, and seems to be the last to grow back in. It was spikey on T, but is feeling soft....I can't stop rubbing my head! I seem to have a crazy widow's peak at the moment...a bit Adams family!

 

Congrats Jen on the last dose.. I can't wait to get there. No matter how bad the side effects get, at least it will be the end of this stage of treatment. Chemo can kiss my a***!!!!

 

 

Hoping everyone is good

 

All the best

Helen

 

 

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Re: November 2019 Chemo Starters,

Don't have any breathlessness or dizziness  (just woozy) so guess I don't qualify for anything...onc not particularly concerned as was low already but keeping an eye on it. Mind you iron tablets would help the diarrhoea 🀣

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Re: November 2019 Chemo Starters,

I was 90 when I started chemo and has gone up to 95.... Think I was already anaemicblast year but never took my iron tablets as they gave me constipation. Wish I had done now!!

Think my muscle weakness and fatigue are probably worse because of it but also think my body is used to it....

Xx

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Re: November 2019 Chemo Starters,

Hi Lisa not sure why no iron tablets she never went in to detail. The hubby had some floradix and did try some but be warned not a nice taste lolπŸ˜‚πŸ˜‚

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Re: November 2019 Chemo Starters,

It sounds like a few of us are anaemic. I think nurse today said mine was 105 and normal levels in women = 125-145.

I wonder why your onc said to avoid iron tablets Chris? Helen mentioned Floradix so I thought I might try that.

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Re: November 2019 Chemo Starters,

I have very prickly stubble on my head but it’s not long enough to see the colour. I know a lot of my hair will grow back grey as I dyed it before chemo. Not sure what colour the brown bits will come back or if/when I’ll dye it again...

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Re: November 2019 Chemo Starters,

I'm guessing it's the way I've done my numbers , I'm 11.00 you are 9.5 which is a lot lower than me you must feel awful !!! here they transfuse at 9.0 if symptomatic  

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Re: November 2019 Chemo Starters,

11 sounds awfully low KC 😱. I am 95 and am feeling effects. My onc tokd me that no treatment below 80 and def transfusion...Hope they are going to treat you for this and please look after yourself if you are feeling that dizzy etc...😘

Xx

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Re: November 2019 Chemo Starters,

KC you take care xx make sure you’re holding on to something coming down the stairs. X or do a bum shuffle ! 

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Re: November 2019 Chemo Starters,

Down to 11 was 11.4 last week  but I'm quite symptomatic tired, sleepy  breatless on exertion ,very dizzy on standing  nearly passed out twice , once in bathroom ( matching you Debs ) nearly ended up in the toilet and once on the stairs also risky area , my diet isnt great very stodgy driven few actual greens so really need to make the effort !!! Red cells take longer to recover than the others as well 

 

KC xx 

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Re: November 2019 Chemo Starters,

Seriously cannit face liver, ha ha. 

What are you down to with Hb?  

Because of my πŸ’© problems I have had to eat really plain food and not any veg etc so am going to ask if I can take B12 to boost my white blood cells as they keep dropping....

Xx

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Re: November 2019 Chemo Starters,

Thanks Chri that's helpful I was thinking supplements but seems they arent that good plus never thought they might not be recommended , I've realised my diet isnt very iron rich so will make a conscious effort , must admit I used to love schools brIsed liver !!! πŸ˜›

Xx KC xx 

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Re: November 2019 Chemo Starters,

Hi KC mines been down they said I was anemic but no transfushion as yet. If it helps I have been eating lambs liver, beef and spinach as that boost red blood cells. I asked my oncologist about iron tablets but she said they dont recommend when having chemo

Hope you ok xxx

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Re: November 2019 Chemo Starters,

Can anyone recommend a cereal high in fortified iron as my Red cells continue to drip and I want to avoid a transfusion , I downloaded a nutrition sheet but just says a fortified cereal  dont fancy scanning the shelves so just wondered if any of the vegans on the forum can help ?? 

Many thanks KC xxxx

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Re: November 2019 Chemo Starters,

Thanks Viv, 

Yes I’ve had a good week, been tired but feel much better, just got last cycle on Monday. Hopefully bloods will be ok. 

KC, I have very light coloured hair growing back, think it is either white or grey! I’m going to get it shaved off at the weekend, as growing back patchy! 
xx

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Re: November 2019 Chemo Starters,

Oh my goodness I might get curls to  !!!! Not sure I could cope with that 🀣 and yes its white totally devoid of any colour , interestingly my mum coloured her hair because she said hers was white not grey ( she died 2000) I never saw her with white hair xx KC xx 

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Re: November 2019 Chemo Starters,

Hope you've had some good days this week JenC. At least you've only got 1 left πŸ˜ƒ

Xx

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Re: November 2019 Chemo Starters,

My hair is def growing back!! Def look like a kiwi now...πŸ˜‰ Still looks dark brown and have  it shaved it...is it all white KC??? I had a pal who had dark straight hair (he's male) and his hair grew back grey and curly!! He was 38 and very hair proud so devastated at the time...it did straighten out again but never lost the grey...πŸ‘¨β€πŸ¦³. Other pals grew back grey but went back to normal colour so 🀞🀞 xx

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Re: November 2019 Chemo Starters,

Helen describes it as like a kiwi. 
that’s me lol. But it’s to short to tell a colour yet. 

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Re: November 2019 Chemo Starters,

Hi all , has anyone noticed any hair growing back ? I have in patches however I was mid brow / mousey and now its white and I mean WHITE !!! 😱, I'm still shaving as its patchy but I was surprised , I had read this can happen but it was a shock to see πŸ‘΅

Xx KC xx 

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Re: November 2019 Chemo Starters,

Hi Jen 

Sorry you ended up in hospital , I'm also neutropenic but luckily have remained well although going a bit bonkers with self imposed isolation 🀯 just hoping bloods ok on Tuesday so I can restart , I wonder what they do if I cant I dont fancy a 2 week break !!! 

Hugs to all xx KCxx

 

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Re: November 2019 Chemo Starters,

Hi Viv.
I have my last one a week on Monday, hopefully will have some good days this week. Good luck Deb for your next one.xx

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Re: November 2019 Chemo Starters,

Jen and Flou my reaction was on the 2nd Docetaxel too but mine was the swelling and rash 11 days later! 
again like everyone else I felt crummy for the majority of my 21 days each time, maybe having 2 or 3 good days max. 
just 4 days left before dose 3. Fingers crossed for us all xx 

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Re: November 2019 Chemo Starters,

Agree with you flou about easing in with EC 1st.

Didn't realise you got allergic reaction 2nd time. I'm having my Herc and Pert on separate days to the docetaxel again this time so maybe it's more common than we think..

At least you can have something to combat it rather than stop it altogether.

Xx

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Re: November 2019 Chemo Starters,

Hi Jen,

Sorry you ended up in hospital...πŸ˜” at least you managed to get home this time.

Is it your last one this Monday? That is fab..😁.

Yes I have been out of the game for 1st 2 weeks after docetaxel too. Was hoping it might get better but not sure it does..

Keep well for Monday

Xx

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Re: November 2019 Chemo Starters,

Hi, 

The docetaxel not been good for me, not felt good for 2 of the 3 weeks, I was in hospital for a few days after the first one as was neutropenic and had a infection. Then spent Monday in the chemo unit as had a temperature, but was allowed home with antibiotics as not neutropenic. Roll on a week on Monday for my last on, although a bit apprehensive of the side effects.

 

We don’t have long to go now with our respective treatments, we can get through this. 
love to all

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Re: November 2019 Chemo Starters,

Hi All,

Day 10 after Docetaxel + Herceptin + Pertuzamab cycle 2 slowly getting my energy back but definitely agree these cycles are much more accumulative the EC - I had an allergic reaction when given the Docetaxel on their second round, my chest went tight and I burnt up, the machine was switched off and I was given HMP antidote of hydrocortisone, saline and piriton then I was good to go again just over 2 hours rather than 1. I’ll have to have the HMP before my last 2 cycles now as standard but just wanted to let you know what happens - forewarned is forearmed! 
Thinking about it I’m glad I was eased in with 4 x EC ahead of this set of 4. Now it’s just counting down each day like for us all. We will get there together xxx


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Re: November 2019 Chemo Starters,

Hi KC

I definitely think the same I told my manager during my keep in touch I felt as though the weeks are all just rolling in to one. I try to get out for a walk at least once a day but not always possible πŸ˜”

Got bloods done the other day so am anemic and on antibiotics as bloods showed inflammation some where in my body, but hey ho just keep thinking 2 more to go woo hoo, just hope they can find 2 veins πŸ™‚

Sending hugs allπŸ’•

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Re: November 2019 Chemo Starters,

Hi KC, I definitely feel like I’m just going from day to day and week to week. Today it feels like it’s been forever... But then other days I see some daffodils coming out and I feel like Spring will come and with it the end of chemo. And then we will celebrate! Xx

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Re: November 2019 Chemo Starters,

I try and get out every morning ready for Asda to open at 8, a quick walk round and home before 9.30 . works for us lol of course some days I walk no further than the loo and that’s downstairs lol xx 

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Re: November 2019 Chemo Starters,

Hello ladies,

I'm def going from Day to Day, hoping 2nd T is not going to knock me out as much as 1st T. Maybe I know what to expect now!!

Think sometimes you need to get out to keep sane KC!

Xx

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Re: November 2019 Chemo Starters,

Hi Debknits 

I'm risking going for a costa coffee in the morning , to hell with ot i have stayed in all week ( neutropenic) not seen anyone but hubby , and I have cabin fever x 1000% i'm going loopy indoors , need to motivate myself . Does anyone one else feel like they just go from Day to day and week to week ?? 🀯πŸ₯³πŸ€‘

Love to all KC xxx 

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Re: November 2019 Chemo Starters,

Afternoon 

well rash is all but gone, thank goodness. But my skin is incredibly dry.  Pleased rash as gone didn’t want anything to delay  next weeks chemo. 


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Re: November 2019 Chemo Starters,

Hi Chris

 

If you are signed in then you an click on the envelope in the top right hand corner to send me a message 

 

Hope you find it otherwise we can have to think of another way!! 

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Re: November 2019 Chemo Starters,

Thanks Debs x

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Re: November 2019 Chemo Starters,

Sending a PM

Probably an easier way but this is what I do. 

 

 

scroll down the replies till, you find one started by your intended recipient, in this case Helen.

Click on her name & there should be an option to send message.

 

 

 

 

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Re: November 2019 Chemo Starters,

Chris hang on πŸ‘­hair does start to grow back on t. You might loose eyebrows and lashes but hear hair does start growing back on t. Keep πŸ’ͺπŸ’ͺπŸ’ͺπŸ’•πŸ’•βœ¨βœ¨Shi xx

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Re: November 2019 Chemo Starters,

Hi Chris 

Yes was pretty gutted re the treatment we were late Nov staryers anyway , at this rate I will be trailing well behind everyone lol last but not least eh !!! 

Xx KC xx 

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Re: November 2019 Chemo Starters,

Morning Ladies

Am still here ended up a the doctors yesterday as my throat all up and ended up having to go for blood tests and phoning the helpline. The nurse said to see what the bloods come back as great Smiley Sad

 

Well my hair is coming our in handfuls with the T, it wasn't so bad on the FEC. I have tried to cold cap to try and save a bit of it as both of my stepdaughters are getting married this year, one in June and one in September. I wouldn't have bother to use the cold cap if it wasn't for the weddings, looks like a hairpiece, wig or extensions will have to be considers Smiley Frustrated

 

Debs it must be such as relief that you have had your last one, wish I was on mine, but 2 more to go, last one on the 11th March. 

 

KC we should have been on the same dates all along, but sorry yours have been cancelled sending hugs. 

 

Lisa my eyelashes are very sparse so not even trying to put mascara on, but you did make me laugh. The LGFB was really good and the people running it were very helpful and of course you come away some some lovely goodies.  Smiley Very Happy

 

Helen hope I'm not appearing thick here, but how do I pms you for the whats app group, god this chemo brain dosn't help 

 

Viv you sound as though you have a really good oncologist, phoning you and letting you have a little moan, mines never done anything like that Heart

 

Well ladies will sign off here, sorry if I have missed anyone out sending hugs to everyone HeartHeart