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Anyone starting Chemo in December 2018?

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Re: Anyone starting Chemo in December 2018?

Hi Jayne1966, So sorry it's not easy to make the decision, it has to be what's right for you, I took my age and hobbies and life plans in mind to make my decision and glad I did, I found my emotions were worse before I started to get inflated because for me it was hard to look down and not see something there and it also made me even more unhappy in my own skin, unfortunately we have decision to make that we never thought we'd have to just give yourself time xxbig hugs always. It would be lovely to just have a cancer free thought tho wouldn't it xx
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Re: Anyone starting Chemo in December 2018?

Hi Dikat 

Sorry to hear you was at A&E last night I know it's scary being there. How are you feeling now? I had a really bad migraine on my first chemo when I spoke to my oncologist she said it was not related to any of the medication and I think it was stressed related so your oncologist is probably right stress can really effect us more then we realise but it goes hand in hand with breast cancer unfortunately.

I feel the same as you with everything that's to come as I'm only at the start of my journey I know I will have A double mastectomy but the only way I can deal with it is take each treatment at a time once the first chemo is over look to the next and take it day by day and remember we are a day closer to being healthy again ☺️

Sending you virtual hugs you can do this 💪

Member

Re: Anyone starting Chemo in December 2018?

Hi Dikat, sorry to hear about your hospital stay, its so difficult to stay strong for everyone else sometimes I find it helps but at times all you want to do is scream and shout, it's so difficult when you've got kids to worry about I hope they can talk to other family & friends. I'm really pleased with my mastectomy got a few more inflations to go but I don't think I could have coped not having it done hated looking down past it and hated my shape. My concerns is I'm still waiting to start chemo but need the heart scan first xx big hugs & positive thoughts xx
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Re: Anyone starting Chemo in December 2018?

Hi Jayne1966, catlady37 and pastamissus ,Drummerswidow and anyone else around. Jayne I'm sorry to hear your news re your other breast being affected. I'm pleased you got to talk to a good nurse and think you are doing great despite everything being thrown at you. As is everyone else in our club. I think you're all such an amazing bunch. It's so hard when not only do we have our own thoughts and fears to contend with but those of our children and loved ones as well. I'm feeling shocking today. Spent last night in a&E. Heart started going crazy,  pains down my arms, numb hands etc. Was awful!!!! Heart and bloods checked out ok, eventually. Nurse spoke to Oncologist today and he said to stop Filgrastim for a couple of days even though I was ok with it last time. Onc actually things it's all stress and wants me to see someone. I feel so out of control and so scared. I know we're all waning at times so good to know others have come through the other side. I'm also thinking of double mastectomy after chemo and can't even get my head round reconstruction at this stage. I know I need to get a grip as I'm currently living live in fear xx

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Re: Anyone starting Chemo in December 2018?

Patasmissus, I definitely think I want 2 mastectomies. I just want rid tbh. My best friend from school has also been through it and is living flat. I can't bear the thought of them finding more in the future so they have to go. Not sure about reconstruction at the moment but that seems like a small decision in comparison. I'm sure nearer the time I will work it all out x
Member

Re: Anyone starting Chemo in December 2018?

Jayne - I got it in both breasts too, have had 2 mastectomies and am living flat. In some ways it's actually easier with no boobs at all than just one. All the best for treatment

Member

Re: Anyone starting Chemo in December 2018?

What horrible news for you. It must be a nightmare to get your head around it all. Sending hugs. I really don’t know what else to say. Bless you everyone is here for you xx
Member

Re: Anyone starting Chemo in December 2018?

Hi Catlady. I asked the nurse. She only gave me the last ones so next time i’m going to get all of them. 

Member

Re: Anyone starting Chemo in December 2018?

We are all here for you xx
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Re: Anyone starting Chemo in December 2018?

Catlady, thank you xx
Member

Re: Anyone starting Chemo in December 2018?

Jayne I'm so sorry to hear that I bet that came as a real blow today ☹️  there really is no pattern to breast cancer its all a mind field! 

But looking at the positives it's stage 1 so they have found it nice and early and can tweak your chemo treatment to blast that too all at the same time keep positive you sound a strong lady so I know you can do this. I will be having a double mastectomy but I will cross that bridge when I come to that stage.

Sounds like you have a really good nurse and that's great she's gone through treatment plans and info on complementary therapies.

I feel for you with your kids and commend you that they are your main concern I can't give advice in that department as I have none but you sound like your doing a super job as for screaming and crying sometimes you just need to let it out and lean on friends and family tomorrow is a new day and you will see through the woods. Sending you a virtual hug xxx

 

Member

Re: Anyone starting Chemo in December 2018?

Drumerswidow, hope you feel ok following #3. One more down x
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Re: Anyone starting Chemo in December 2018?

Hi Catlady, Nurse visit was mixed. I had biopsy results from a second test done following MRi scan. I have cancer in keft breast as well. So HER2+ and oestrogen+ on right Grade 2, and HER2- and oestrogen+ on left Grade 1. Feel so gutted to have even more of it even if it is a lower grade. Feel like i just want 2 full mastectomies and to get rid asap.

On the positive side I have been given some info on complementary therapies and things to help the family too, and the nurse spent almost an hour talking through the different treatments and prognosis and the whys and wherefores of it all which has helped.

The kids are still my main area of concern and 2 out of 3 are not dealing with it well, although they both suffer from anxiety anyway which we were already struggling to deal with. Can't see the wood for the trees at the moment and not sure how I feel. Half of me wants to scream and cry whilst the other half wants to try so hard to stay positive and put on a brave face. 

Member

Re: Anyone starting Chemo in December 2018?

Drummerswidow I hope you're feeling OK after your third round and you enjoyed your nap. I think I will be napping very soon. That's nice to hear you have buddied up with someone else it makes it seem easier abit crap you had such a delay though.
Who do you ask for a copy of the blood results would that be the nurse or oncologist?

And Dikat how are you feeling today I hope you're feeling better I know you have had a rough ride so far but I'm hoping it's getting better for you xx
Member

Re: Anyone starting Chemo in December 2018?

Drummerswidow hope all goes well after your 3rd EC. Another one down. I do the same with bloods. I suppose it gives me the feeling of slight control in an otherwise uncontrollable situation!

Jayne1966 Hope all went well at today's appointment and hope you got some answers to your questions. 

Take care everyone x

Member

Re: Anyone starting Chemo in December 2018?

Hi All. Let’s hope we all have a better week this week! Wishing everyone feels better emotionally and mentally. It’s tough isn’t it? 

 

I’ve had my 3rd EC today. Not been in long due to a delay. The chemo the pharmacy sent down expired yesterday! 🙄🙄🙄. So I had to wait for some more to come down from pharmacy. Red faces all round. Nurses weren’t happy because they were really busy.

 

I’ve buddied up with another breast cancer lady. So it’s nice to compare side effects lol. I’ve started asking for a copy of my blood results so I can keep tabs on what’s happening. Feeling tired this afternoon so I’m joining the dogs for a quick 💤💤💤💤💤. Let’s hope that we don’t get to many problems following chemo today

Member

Re: Anyone starting Chemo in December 2018?

Hi Marykamille 

Thank you for your reply I've just had my second chemo today and back home and feeling more positive today I think I just needed a good cry and to try get my head around my hair going still think there will be more tears to come maybe I would be better of just shaving it then it's done and move forward.

I have a really nice wig but still haven't had the courage to go outside in public with it yet and I don't think the headscarfs suit me they can look so lovely on lots of women but I don't think I have the face for one but will wear one at home. That made me laugh what your husband said as my other half said something very similar 😁

Hope you're having a positive day too sending you big hugs x

Member

Re: Anyone starting Chemo in December 2018?

Hi Jayne how did you get on today seeing the nurse? Hope you got all your questions answered

I like the way you had a mohekan for the day it did make me smile picturing it in my head i wish I was that brave 😁

Feeling more positive today after my good cry sometimes you just have to let it all out sending love and positive vibes to everyone x

Member

Re: Anyone starting Chemo in December 2018?

Pleased to hear you're not suffering ill effects of 2nd FEC. Good luck with the head shave. I've still got a bit of stubble hanging on at the back but pretty much bald sides and top x

Member

Re: Anyone starting Chemo in December 2018?

Marykamille what Web site did you use for the head accessories?
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Re: Anyone starting Chemo in December 2018?

Fed up of shedding hair, so off to get it shaved tomorrow. Day 5 of FEC2, no brain but apart from that minimal side effects. Just bored!

Member

Re: Anyone starting Chemo in December 2018?

Hi Catlady
Like you I am reading posts and trying to keep up. Hope you have a better day today.
My hair is just a few wisps now and it's so hard to look in the mirror! I keep my head covered at all times. My wig is good and does not irritate but I save that for when I am outdoors.
Yesterday I ordered a few hair accessories - scarves etc on a good, quick website. These things can give us a lift. Anyway, my husband hates the headscarf I wear mostly and says I look like a fortune-teller!
We had a good laugh over that.
You can't carry on as normal - let yourself cry and rage and whatever it takes. What we're going through ISN'T normal - so be kinder to yourself. XX
Member

Re: Anyone starting Chemo in December 2018?

DiKat, moving on to THP after 3rd FEC. With you all the way x
Member

Re: Anyone starting Chemo in December 2018?

Oh no Fluffysunsinepants. This is all certainly a test. Pleased to hear your clear and hope you feel less drained in the next day or two. Take care x

Member

Re: Anyone starting Chemo in December 2018?

Hi all,

DiKat sorry to hear your having such a dreadful time with the chemo, be gentle with yourself.

I have had a nightmare since Thursday when my oncologist thought i had a blood clot, so ordered an ECG, blood tests, chest xray and CT scan, also two days of clexane as a precaution. Thankfully all is clear but i resemble a pin cushion & feel drained.

Onwards and upwards x

Member

Re: Anyone starting Chemo in December 2018?

Thanks Jayne1966. It does feel good to share with others who understand.  So are you moving onto THP after 2 Fec? Good luck for your appointment tomorrow and let us know how you get on. Hugs to you too xxx

Member

Re: Anyone starting Chemo in December 2018?

Callaly, it didn't really sink in worth me either until my hair fell out. I tried to have fun with it by getting a mohekan for a day... at 52! But still I have the cancer look now and is very upsetting. Like your and DiKat I am also chemo first having just had second FEC. We are all scared as heck so just need one of us to be strong each day for those wonderful words of encouragement. We have this ladies... tomorrow is another day xxx
Member

Re: Anyone starting Chemo in December 2018?

DiKat I really feel for you. Sounds like a rough couple of days. I'm having exactly the same as you only 4 THP which I'm terrified of. Seeing my cancer nurse keyworker tomorrow and I have lots of questions. Really hope you stay to feel better soon. The waiting for the feeling crap and side effects to tail off is bloody awful. Big hugs xxx
Shi Community Champion
Community Champion

Re: Anyone starting Chemo in December 2018?

Ladies, cry, scream, shout, pull a moon out of your bedroom window, do what ever you need to do for you. It’s hard to put yourself first as we are all naturally by nature caring for others before ourselves but you have to focus on you right now and just blame it all on the steroids/chemo 😁👍don’t forget your look good feel better sessions with Macmillan, you’ll be shown techniques on how to apply makeup specially, silly as it sounds when you get a bit of face on it does take off the washed out paller you can end up with on chemo. Loosing hair is a massive hurdle to overcome on the journey and a day at a time is all you can do, but it’s a day closer to finishing chemo 👍 and hair starting to come back, once all treatments done the lush red dot shampoo bar called new and a bit of Jamaican black castor oil rubbed on heads gets hair back nice and quick and thick. Tried and tested tip from mishy18 from july17 thread, we used it and so have others from other threads 😘😘 big ❤️❤️❤️👭👭👭👭💕💕💕✨✨✨Shi xx
Member

Re: Anyone starting Chemo in December 2018?

Thankyou Dikat yes I've been trying to carry on as normal and trying too look positive to family but in reality I'm scared and it's so hard because as much as they try and understand no one really knows unless you're going through it or been through it.
I'm sure your not having a negative effect on family they will understand and I'm sure they want to help as much as they can when you're not feeling well due to chemo
And yes I really hope tomorrow is a better day for us we have to take each day at time xx
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Re: Anyone starting Chemo in December 2018?

Thank you drummers widow that's made me cry just reading your reply, it helps to know I'm not alone so thank you xxx
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Re: Anyone starting Chemo in December 2018?

Sorry you're feeling like this catlady, I'm the same having chemo before surgery so guess still getting our head round it. Have a good cry and let it out. I'm feeling angry today as feel like I'm having such a negative effect on my family with my difficulties with chemo. It's good we have this place to vent. Sending virtual hugs, and hopefully tomorrow will be a better day for both of us xx

Member

Re: Anyone starting Chemo in December 2018?

Hi Catlady.

 

You have a good old cry! It’s an up and down rollercoaster. It’s perfectly normal for you to feel like this. This whole cancer thing is horrible and you are going to have days like this. Wish I could give you a big hug xxxx

Member

Re: Anyone starting Chemo in December 2018?

Hi everyone

I haven't posted lately but have been reading other people's posts. 

I'm having a really down day today where I can't seem to stop crying, and feel this is the only place where people will understand how I'm feeling right now.

I have my second chemo tomorrow and even though I knew my hair would start to fall out, yesterday and today I've had a whole lap full of hair and I'm surprised I still have any left. (my hair was very thick)

I'm having chemo first before surgery so I have been trying to carry on as normal as can be but I think losing my hair has finally hit home that I have cancer and this journey is very real! 😭😢

 

Member

Re: Anyone starting Chemo in December 2018?

Yes, remember your previous post about burning sensation. So good to get advice from others who have been through this. Just not worth taking any chances with anything. Thank you xxx

Shi Community Champion
Community Champion

Re: Anyone starting Chemo in December 2018?

Ladies please always get burning pee checked with units even if no raised temperature. Fec did that to me and it was infection that if I’d not got to unit and on drip could have been serious. Unfortunately just during chemo you have to be super careful to the point you think I’m turning into a hypochondriac but you are not, this is chemo and getting through safe is all that matters no matter how much you think oh i’ll Just wait until tomorrow you are always better to make a quick call and ensure everything is ok. ❤️❤️💕💕💕✨✨✨Shi xx
Member

Re: Anyone starting Chemo in December 2018?

Hi Kitkat18

I had been drinking loads of water, started day prior to chemo and ever since, around 2 to 3 litres a day so feel I am hydrating well. I can tell that one of the drugs irritates my bladder though as feel almost urine incontinent for first 2 to 3 days. Think I just have to roll with these se's and carry on being vigilant with temp etc. Just talk about knock you when feeling down! Fingers crossed for you with T. Will look forward to hearing how you get on x

Member

Re: Anyone starting Chemo in December 2018?

Hi Dikat, sorry you are having such a rough time. I also have had cystitis symptoms 3 times, had it checked with no sign of infection. Now I know to down a couple of pints when it starts and it quickly resolves. So for me I think it is dehydration, which can also give me headaches. One of the fec is also known to cause bladder irritation so I also have a glass of cranberry juice in the first few days after chemo. Also had to be treated for thrush downstairs - the SEs seem never ending don’t they?! However just had final fec so onto the dreaded t x

Member

Re: Anyone starting Chemo in December 2018?

Hi DiKat. Sorry you are feeling so unwell. It must be really miserable for you. Lack of sleep makes it worse. I hope that you feel better soon. Xxxxx
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Re: Anyone starting Chemo in December 2018?

So, yesterday was day 4 after second fec (reduced dose this time) spent most of evening in gp unit! Started feeling a burning sensation down below but tested urine and no obvs sign of infection. Couple of hours later, started with intense burning in my chest again and didn't have much of a voice. This was how I started when I ended up neutropenic prev month so as you can imagine, a little anxious, even though it was pretty early in cycle. I've taken much better care of my mouth this time and although no visible thrush/sores in throat thought I better ring helpline to nip it in the bud if possible. Was advised to go to gp unit to see if they would prescribe fluconazole in case thrush was in gullet. Gp initially a little reluctant at first because partly they don't seem to understand effects of chemo drugs and secondly don't like to prescribe without justification if they can't see anything visible. Agreed to give me a weeks course after further discussion and that it was based on advice from ward and my prev experience. Decided to do bloods which again due to lack of experience with chemo drugs through up some results that made him want to check with the on call registrar. As the GP unit is located at the hospital where the oncology department is, I asked if I could talk through the results with the nurses on the ward whilst he was waiting for the registrar. He agreed to this. My white cell count and neutrophils were in the 30s way above normal. The nurses said this could be as a result of steroids and filgrastim which can cause increase and wouldn't have started declining yet as only day 4. They did say my infection markers needed checking though to be on the safe side. This was done and they came back in the normal range so, so far so good. They've asked me to call tomorrow and may do repeat bloods. Went back to see GP and he was happy with feedback and had also spoken to registrar. I know it's not possible that GPs fully understand all this so do feel grateful that the out of hours go unit is located at the hospital. I did feel as though I had to try and help put the pieces together to gain the reassurance I needed. Lucky my hubby takes it all in .

I'm not feeling any better or worse at the moment but have only just taken second fluconazole. I know I've got to stay strong and keep positive but am beginning to struggle. Doesn't help with lack of sleep, feeling dizzy and having migraine type symptoms. Only one more fec to go but then 3 THP so I'm dreading what that will bring.

Sorry for the downer but needed a rant. Hope everyone else is doing ok xx

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Re: Anyone starting Chemo in December 2018?

You're right about calories, DiKat. They have to be the priority. I heard a report just out that 'dieters' (not us - our weight loss isn't deliberate!) must not cut out carbs as they supply so much vital fibre. What they recommended at meals is exactly what I usually eat anyway. Just not able to eat so much of anything really. After the mastectomy my posture has really changed, too. Not a good look!
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Re: Anyone starting Chemo in December 2018?

Normally you take steroids as early as possible in the day, I am on 4mg dex at breakfast and 4mg at lunch for 3 days. Making me so hungry, I put on 4lb in the 3 weeks since I started chemo. Gutting as I spent most of last year on a serious diet and lost 4 stone! Hair now shedding, so am feeling happier that chemo is working! (was starting to worry as very few side effects except tiredness).

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Re: Anyone starting Chemo in December 2018?

Hi Angelblue
Just thought I would say hi and hope this cycle is being kind to you x
Member

Re: Anyone starting Chemo in December 2018?

It’s awful. I’m trying to keep it in check but it’s creeping on😟😟

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Re: Anyone starting Chemo in December 2018?

Drumnerswidow I am putting weight on too. It's gutting!
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Re: Anyone starting Chemo in December 2018?

Just looked at the predict site and it says not suitable for people having chemotherapy before breast surgery so that's probably why it's not been mentioned. I will get more information from oncologist and breast cancer surgeon, just need to deal with this awful chemo and side effects first. Thanks for your help xx

Member

Re: Anyone starting Chemo in December 2018?

It’s all very frightening isn’t it. I have a grade 2 invasive micropapillary ca ER+8/8 & PR +7/8 with high grade DCIS. I would speak with the Oncologist again to discuss further xxx
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Re: Anyone starting Chemo in December 2018?

Yes I do. Still have some trouble sleeping.
Member

Re: Anyone starting Chemo in December 2018?

No predict wasn't mentioned. Its grade 3 IDC, Er0, Pr0, HER2+ multiple lymph node involvement in axilla. This is from the letter I received from Oncology consultant. Scares me to death reading that stuff but know I need to face up to it. 

Member

Re: Anyone starting Chemo in December 2018?

Hi DiKat. I’m having a Taxol on its own. I had mastectomy and lymph node clearance. 26 nodes taken, 17 of those affected. Did they go through the Predict site with you. It gives percentages. Also what about phoning the nurses here. Don’t mean to pry but what grade cancer have you? Sometimes that affects your treatment options. Xxx