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May 2019 Start

Member

Re: May 2019 Start

Dear SP

 

Your results are such good news. What a relief.

 

im really sorry to hear about your mouth, that does sound awful, I hope this continues to improve. If I read/hear of any ideas I will pass them on. I have only been told about Corsadil daily as a mouth wash.

 

Joemic - I hope your hair appointment goes well, I haven’t been washing mine either, just wearing a cap. Also that your blood tests go well.

 

love to all

xxx

Member

Re: May 2019 Start

Hi all

 

SP - I'm sorry to hear you haven't been too well, I don't know of any mouth things apart from the salt water gargle but I'm sure somebody else has suffered this. Glad to hear your genetic test have proven to be negative, that must alleviate some of the worries you have had to deal with over the past few weeks, I bet you are so relieved and quite right too.

 

Grannypops7 - I've got my fingers crossed that my next 5 go like this one but will wait and see. I know what you mean about washing your hair - mine has been coming out in clumps and as I'm due at the hairdressers tomorrow I haven't dared wash it in case it all fell out, which is a bit daft seeing as though that I why I'm going to the hairdressers tomorrowSmiley LOL I've had it in a hair net but it's still managing to escape! I'm day 17 today and feel fine - I've got my blood test tomorrow and the Oncologist on Wednesday and 2nd EC cycle Friday if all bloods are ok.

 

KellyP - Hi and welcome to the forum, I know what you mean about work but my Onc doesn't want me to go to work, well at least not for another cycle or 2 to see how I cope with the chemo.  I've worked for 35 years and find it difficult to stay off; I'm just not used to it, this was the first time in 5 years I've been off and nope I just don't like it, so I get where you're coming from.

 

RuthG - Maybe we got the same wigSmiley LOL I'm hoping the hairdresser will trim the fringe on mine tomorrow otherwise it will drive me mad.

 

Joemic x 

SP
Member

Re: May 2019 Start

Glad to read that you are all coping well. I’m afraid I’ve had a bad weekend with a red, hot mouth which was so painful I couldn’t eat....tried normal alcohol free mouthwashes and gel but they burned. My gums are so inflamed! Not a pretty sight! In the end I resorted to hourly salt water rinses. They have helped. Also bought a recommended mouthwash online and that has soothed the gums. I feel better today but would be interested to know if anyone can recommend anything to treat this as it could happen in the next cycle?  I’m losing weight as I’ve had several days of not eating much and have gone off sweet stuff!!

My good news for the day is that my genetic test results confirm I don’t have the BRCA1 or 2  mutation so I don’t need a 2nd mastectomy! 

Hurray!! 

SP

x

Member

Re: May 2019 Start

Hello to all

 

I hope everyone has had a peaceful day, and where possible been able to enjoy the sunshine. 

 

I know what you mean about washing your hair, I was surprised how concerned I was about this, and am considering just shaving it off to take away the element of uncertainty. I have bought a wig, but need to get this trimmed, as the fringe covers my eyes!!! I look a little like a highland cow.

 

Kelly - your treatment plan sounds similar to mine, I have 3xEC at 3 weekly intervals then move to the Ppaclitaxel for between 9-12 weeks. 

 

Love to all

Ruth xxx

 

Member

Re: May 2019 Start

Hi Joemic

Went better than I expected...felt nauseous for four hours..but not too bad..took all sickness meds..hopefully I’ll be similar with next 5...but it changes to Taxotere for last three...not sure how this will be...got my wig day before treatment started but now feel apprehensive about wearing it...was frightened to wash my hair yesterday incase it all fell out 👀👀 but still there..hope you’re continuing to do well x

Member

Re: May 2019 Start

Hi Ruth, my treatment started on Friday. So it’s every 2 weeks, 4 EC and 4 paclitaxel. Must admit haven’t felt too bad, just heady and tired. It’s good to read everyone’s different experiences. I really didn’t know what to expect. I plan to be as normal as possible, but will know when I need to take it easy. I am going into work tomorrow, just for 4 hours. It’s a short 10 min walk. Or I can jump on a bus. Some people will think I am nuts, but sitting around at home, just isn’t me. 

 

Thank you for welcoming me into this group

 

Kelly xx

Member

Re: May 2019 Start

Hello Kelly

 

I am sorry you are here, but you are welcome. Generally I think the forum is for sharing experiences and getting advice and support.

 

Has your treatment started or due to start soon?

 

lots of love Ruth xxx

Member

Re: May 2019 Start

Hey everyone, sorry didn’t know how to use this. Lol. Well I am here now.

 

Kelly xx

Member

Re: May 2019 Start

Hi fellow May buddies

 

Hope everyone is feeling as well as can be and any side effects are a minimum. Still feeling ok, went for a walk into town with hubby and youngest to get a hair net (shedding loads and it's doing my nut inSmiley Happy), thought the exercise would do me good 1 1/2 mile there, a walk around and 1 1/2 mile back. Unfortunately I undid all my hard work and had the most fabulous double cone ice cream with a flake to top it off (rude not too), boy it was worth it, warm sunshine and ice cream, great company - what more could a girl ask for; was able to forget about present woes around chemo for a couple of hours - fantastic.

 

I hope everyone else had a good day and enjoyed the sun.

 

Joemic x 

Member

Re: May 2019 Start

Jemima - if it helps any I started crying in the chemo unit when they started talking through the injections with me Smiley Sad  It wasn't so much the thought of doing them, just being overwhelmed by the whole thing.  I did my first one yesterday and it was honestly fine, but hopefully they can arrange something for you if you can't face it.

 

Louise - Nice to meet you (if only it were in different circumstances!) - must be lovely to have 3 grandchildren Smiley Happy  Oh and scruffy dogs are the best - I have two.  One has been really looking after me since I've been ill, the other couldn't care less as long as I'm not late feeding her lol Smiley Wink  I really hope you get to see Bon Jovi - something really nice to focus on.

 

Ruth - your reaction to the EC sounds similar to my FEC.  I'm not sure how similar they are.  Glad you are feeling a little better.

 

SP - yes, the injections are not as bad as you imagine.  I guess with all of this treatment, it's the thinking about it beforehand that makes it feel worse!

 

Susan - That's great that you have had the district nurse come round to do your injections.  I was hoping the nurse was going to come and do my PICC line care but it looks like I will have to go in to get it done.

 

Joemic - Sorry your hair is shedding now, but at least you have a lovely wig.  Since looking at wigs I was amazed at how natural they can look.  I think taking it out for a spin the first time will be the scariest and hopefully it will be fine after that.

 

 

Member

Re: May 2019 Start

Hi

Thanks all.  I did speak to a nurse helpline where they did my operation and she said it varied how many days you have injections for depending on the dosage of the chemo and how likely it is to affect your cell count.  She said the chemo nurses would come up with a plan which might involve the district nurses - though I can't believe that after the ward nurses had to beg for the service local to me to do the dvt injections after my operation.  The assumption that I would do my own injections and the last minute referral just before my discharge left me extremely anxious.  At least it looks as if they might not have to start immediately after the chemo. 

SP
Member

Re: May 2019 Start

Hi Jemima,

 

No, that would have been too much for me. If you can’t cope with doing it at all, try asking the chemo nurses for a district nurse to give you them? 

 

SP

x

Member

Re: May 2019 Start

Hi SP

 

Thank you for your reply.  To put it this way, would you have been able to get in a taxi and travel for an hour to get to the hospital for several days after the chemo to get the injection because realistically that's what I'm going to have to do?

 

Member

Re: May 2019 Start

Good afternoon ladiesSmiley Happy, I hope everyone is as well as can be.

 

Ruth - if it's any consolation, I felt much better after my EC chemo by the Monday (Like you my day is a Friday). Sure I felt tired but apart from that nothing else - I hope you find the same. What steroids are you taking? I've only had the ones to take an hour before my chemo. Keep up the fluids they do help. I didn't lose my appetite but found that I suffered indigestion if I only ate small snacks despite eating them regularly, the indigestion stopped as soon as I went back to 3 meals a day with no snacking. i guess like everything else we all respond to things differently, you will find what works best for you soon enough.

 

Hi Jemima - From what I can gather from reading posts, I think the injections are a common part of the treatment. I didn't start my injections until the following Tuesday (4 days after chemo) for 5 days. I think some of us have a different amount to have; I wonder if they adjust doses following each pre-chemo blood test, I don't know, suppose I'll just have to wait and see. The needle is very fine and to be honest you cant feel it but I understand your concerns around them, I hope you find a suitable solution.

 

SP - Well done on giving yourself those injections, the first one is scary isn't it then not so bad after, although I still found myself taking a deep breath and making whoosing sounds when I did themSmiley Happy, the kids were wondering what I was doingSmiley LOL

 

As for me I'm now day 15 following first EC and my hair is shedding quite a bit today (I didn't cold cap) so I've booked a hair appointment on Tuesday with a hairdresser that deals with chemo patients all the time, so at least she will be able to give me advice on whether to cut it or shave it - that's if I have any hair left by thenSmiley Wink. It's sad seeing it shed but I've got a wicked wig which is exactly like my own hair - well that is when I dye my natural colour which is rather grey back to my original rich brown colour!. At least I know the chemo is working, in that it's attacking  the fast growing cells so hopefully it's getting the rogue blighters that might have escaped from the original tumour. Other than that still feeling good and getting on with normal activities. Will post a little about myself later on.

 

Joemic x 

Member

Re: May 2019 Start

I have thankfully had the last of the daily injections after round 3 of FEC and the district nurse service came round every time . I reasoned they were so important I could not face attempting and failing or not injecting properly . You really should not have to do it yourself and I just told the Christie I couldn't and they sorted it 

SP
Member

Re: May 2019 Start

Hi Jemima, 

 

I felt exactly the same about the daily injections!! My 1st chemo was May 3 so I have just finished my last injection. I came home with 7 injections...one each evening, starting the day after chemo. I was also really anxious doing the first one...but felt I had no choice, as my husband is more squeamish than me and it seemed ridiculous to contemplate travelling to a friend to help me with a 10 second task!! If you really can’t contemplate trying it, have you got a friend who is a nurse or doctor,  who lives near to you? 

 

I have braced myself and done them. Honestly, if I can do it, anyone can!!  I think you will have them after each treatment. It seems to be pretty standard now to have these. It is worth doing it as I had chemo in 2012 and my last two cycles were delayed because my white cell count was too low to proceed. I was started in the injections then and a district nurse came to the house to give them to me? I suspect this service has been hit by cut backs and the increasing number of chemotherapy patients? 

 

SP

xx

Member

Re: May 2019 Start

Hello all

 

I had my first EC yesterday at midday, the nausea and shakiness started about 4.30 and lasted until 9ish, I was in bed though out, and rested in between bouts. Has a reasonable night and feeling better today, just tired out easily and do not feel like eating.

 

I am taking all the meds, anti sickness, steroids and the injection. The injection was the bit I was worried about but it was ok. 

 

I hope everyone else is doing well

love to all

Ruth xxx

Member

Re: May 2019 Start

Hi Bananna

 

Lovely idea about sharing about ourselves.  I'm going to be 60 in October - but am very young at heart.  I'm married with 2 grown up children and 3 grandchildren.  I used to work in a school too - as the Business Manager, doing all the finance and budgets.  I was made redundant at the end of Dec.  I've never watched a single game of thrones, lol.   I love running, but am very slow and have terrible style.  My credit card took a real bashing at the beginning of the year as I booked up lots of runs - now I cant do many of them because of C.  I keep telling my onc that the chemo plan has got to fit in with my running plan 😅  but she doesnt laugh, just looks at me like I'm bonkers 🤣.  I also like walking my scruffy little dog.  I'm also a big Bon Jovi fan - got tickets for 21st June - if chemo messes that up I will be well annoyed.  

Member

Re: May 2019 Start

Hello Everyone

 

I'm due to start chemo on Tues 14th having delayed it for 2 weeks to try and recover a bit more from my diep reconstruction 6 weeks ago.  I am absolutely terrified and very unsure that I can really go through with it.  My latest wobble today is to do with injections.  I've been reading posts from people who have these.  My team skimmed over this aspect saying I could go to the hospital each day to have them or to my GP practice.  Apart from the huge expense of this, I would think it's infeasible considering how tired and ill I'm likely to be.  And there is absolutely no way I will be doing them myself.  So what I want to know is - does everyone have them routinely or are they just done if needed;  do they start the day after you have your chemo; how many days do they last; and do you have them after every round?  I will have 4 rounds of EC 3 weekly and 4 rounds of T fortnightly. TIA.

Member

Re: May 2019 Start

Hi ladies, hope everyone's week has been the best it can be for them 😊  

 

I was wondering if anyone would like to share anything about themselves as it might be nice to find things in common that aren't just about cancer?

 

Here's a little about me - I'm 44 and I'm married with two grown upish children.  I work as a TA in a primary school (a job I Iove) and other things I love (apart from the obvious) are dogs, arts and crafts, and I'm a big Game of Thrones fan 😊  

 

If anyone else would like to share I would love to hear about you.  No worries if you aren't comfortable with it as I'm aware this is an open forum.

 

Cheers

Banana 😊

Member

Re: May 2019 Start

Good morning lovely ladies

 

Ruth - Good luck for today and I hope it goes well for you, only advice I can give is to make sure you take your sickness meds until at least Sunday, get plenty of rest over the weekend and by Monday you will hopefully start feeling better from the fatigue - keep up the fluids, they do help.

 

SP - Glad you're are starting to feel better, I (on my nurses advice) took my anti sickness meds for the first 3 days irrespective of whether I felt nauseous or not, which seemed to work for me.

 

Bananabrain - You're right there is so much to remember, don't think the menopausal brain fog helps, it was bad enough before the fatigue, never mind afterwards, I have to write things down straight away otherwise I forget........ now where did I put that penSmiley LOLSmiley LOL

 

Mominette - I hope things are going well for you and you're not experiencing any side effects.

 

Grannypops7 and Jenni6 - I hope everything went well for you both yesterday and are not suffering too badly from any side effects.

 

I'm still feeling well, back to my usual self, I'm just hoping the next 5 go the same way although I understand it's cumulative I don't think it does any harm hoping. I went for my wig yesterday, that was a surreal experience; when she picked up a wig it was as if she was holding my head in front of me, it was in my usual style and the colour was uncannily like mine (my natural colour minus the grey) and when I put it on it was so right, needless to say I got it. When I put it on for hubby he just said OMG it's identical to your real hair, my youngest just said when did you dye your hairSmiley Happy, hopefully I'll get on with it when the time comes.. fancy a vibrant blue or purple one nextWoman Very Happy.

At least we're all a step nearer to the end of treatment.. Stay well ladies

 

Joemic x 

Member

Re: May 2019 Start

Dear SP

 

That sounds awful for the 2 days, I am really pleased you are out the other side.

Giving us all hope☺️.

 

lots of love Ruth xxx

Member

Re: May 2019 Start

Susan - you have got me thinking.  I did take paracetamol before the cold cap but now I'm wondering if the headache at the end was when it started to wear off.  I'll try and rejig the timings next time.

 

Ruth- yes I'm on a 3 weekly cycle.  I hope yours goes well for you.

 

SP - I'm sorry you have been having a tough time with the nausea.  I am being careful to take my meds as often as I can.  If I feel even a hint of sickness I take one as long as I'm keeping within my dosage.  I also think I feel a bit better as long as I have some food in my stomach so I've stocked up on water biscuits and hoping that helps.

 

SP
Member

Re: May 2019 Start

Hi all, 

 

I hope you are all coping? My first week since chemo has been up and down. My worst days were Monday and Tuesday when my stomach sounded like a volcano ad. I felt horrible. I couldn’t eat, as I felt so sickly (but wasn’t actually sick) and I was pole axed with extreme fatigue and heavy legs. I mostly slept, feeling very low and sorry for myself. I took Metoclopramide but would be interested to hear if there is anything better to control the feeling of nausea? 

 

However, Wednesday was a whole new day! I slowly improved as the day went on. Today I am back eating and have been for 3 mile walk in the rain. I feel ok and no longer need  the anti sickness meds! 

I am relieved that there were just 2 horrible days. Think in the next cycle, I will take the Metoclopramide  from day 3, as a precaution...unless the chemo nurses can suggest something better? 

 

SP 

xx

Member

Re: May 2019 Start

Dear Bananabrain

 

well done for getting thought the first one, 👏👏👏 I hope you continue to improve over the next day and onwards. Are you on a 3 weekly cycle?

 

I am in for my first sessions tomorrow (EC - although I don’t know how this differs from FEC). 

 

I hope everyone one else is feeling calm and as comfortable as possible.

 

Take care

Love Ruth xxxx

Member

Re: May 2019 Start

Try taking paracetamol before cold cap - nearly a week since my third FEC and no more hair loss - really is worth persevering if you can 

Member

Re: May 2019 Start

Hi guys, just a little update on my first FEC yesterday.  All went ok - the cold cap was absolutely fine at the start but for about the last hour I felt sick which I think was caused by a pressure headache from the cap as once it came off the nausea went away.  So I think I'll see how much hair I lose before the next cycle to see if it's worth perservering.

 

The night was pretty awful tbh - I spent hours with nausea and retching but luckily when I finally got to sleep I was much better when I woke up.  I'm taking Emend which the nurse said doesn't always stop the nausea but stops the vomiting.  I would have preferred to be sick to get rid of the feeling but I guess it's best not to lose fluids.

 

Today's not been too bad - feel like I have a mild hangover but I've managed to take the dog out and have spent the rest of the day napping and watching TV.

 

One thing I'm finding quite difficult (which I'd never considered before) is the amount of admin involved with treatment - remembering to take the right pills at the right time, making appointments for PICC line care and bloods etc.  So much to remember!

 

Hope everyone is having a good day Smiley Happy

Member

Re: May 2019 Start

Oh Ruth I am so sorry they have moved your date yet again, it must be causing you a lot of anxiety, I know it would me but hopefully this is it now and you will have it on Friday - good idea to keep those fluids going (not so good the extra amount of times you need to go to the loo but it'll be worth it) and the hand warm, you'll be able to let me know if the warm hand worked for you. Good luck and keep in touch so we can carry on supporting each other through this testing time.

 

Bananabrain- Hope all goes well today at least the treatment has now started. Hoping you have very minimal side effects and don't feel too bad. I also hope the cold capping goes well for you and it doesn't get too uncomfortable. Let us know how you get on. P.s Love the name!

 

Mominette - I hope the tiredness wears of soon, I'm ok with it now, I think the fluids and walks have helped me get through that part.

 

Hope everyone else is doing well - we will get through thisSmiley Happy

 

Joemic x 

Community Champion

Re: May 2019 Start

Hi everyone, just dropping by from May 2017 starters to wish you all well as you start chemotherapy.  

 

The top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day.

 

Here is the BCC guide on chemo:

https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment...

 

I finished my chemo over a year ago and doing very well again now.  Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum: http://lifeafterlola.com/

Some of the side effects don’t kick it until later on but it’s worth being prepared for them.

Nikki. X

Member

Re: May 2019 Start

Hi Joemic 

thanks for the advice xx

Member

Re: May 2019 Start

Hello Bananabrain

Hope all goes well tomorrow.

I had my first FEC chemo last Thursday and also used the cold cap.

The first 10 mins of cold cap is a bit strange but it does improve.

I have had some good days since last week and some very sleepy days.

Mominette

Member

Re: May 2019 Start

Hi, I've come to join you as I have my first chemo tomorrow.   Although I'm not exactly looking forward to it, I am glad to be getting started after so much waiting around!  

 

I'll be on FEC-T, 6 rounds every 3 weeks.  Planning to try the cold cap as I really don't want to lose my hair, but I've ordered a wig as a standby and am waiting for it to arrive.

 

Had my PICC line fitted today which was fine but was very surprised at the amount of blood!

 

Look forward to chatting with you.  Hope everyone has as good a week as they can Smiley Happy

 

 

Member

Re: May 2019 Start

Hello

 

I hope everyone is doing well. 

 

I am now having my first one on the 10th (Friday) I was a little upset about the new date again but I have settled with this now. I am also going. To be on EC for the first 3 cycles, thank you so much for your advice everyone. I have seen trying to drink more and will try to keep my hands ward too.

 

Love Ruth

xxxx

Member

Re: May 2019 Start

Hi Jennie6 and Grannypops7 the waiting is difficult - I think we imagine every different scenario and that we'll get every side effect going, just to scare ourselves even more. Hopefully the reality will be positive for you, in that like many of us we seem to suffer little from side effects, mind you I've only had one cycle so far and am just hoping i'll be as lucky with the rest of them.

 

I'm not sure how you are having your chemo but the best tip is to keep well hydrated, it helps flush out the toxins afterwards and I've found it actually helps with the fatigue. I'm going to use SP's tip of keeping your hand warm prior to your appointment, they had difficulty finding the vein in the back of my hand because it was cold (I hadn't realised it was), it took 30 mins under a heated hand warmer before it was warm enough and they got the vein on the 2nd attempt.

 

I eat practically whatever I want although do follow the 'pregnancy diet' they recommended i.e. no runny eggs etc other than that they said eat what you fancy.

 

Ruth is having her first round today so you guys will be a great source of support for each other. I'm only having EC but I'm sure there will be others who will be having the same as you guys to help you out with some tips.

 

Joemic x 

Member

Re: May 2019 Start

Hi, my plan is the same as yours start Thursday 9th, also 2nd chemo. Not looking forward to it at all. Doc/per and herceptin, need to roar 🐯 

Member

Re: May 2019 Start

Hi 

I am due to start tomorrow. Like yourself I’m interested in any advice also x

Member

Re: Hello my name is kimmy2

Hi everyone

Hope everyone's journey is progressing and being kind to them. I think I've been really lucky so far very minimal side effects apart from backache which has now disappeared, I think that must have been a side effect of the zarzio injections, I had my last one Saturday. Like you SP I am out for a walk everyday as it does seem to counteract some of the fatigue which is minimal now but I understand this is a cumulative side effect of chemo, so I'd best enjoy my get up and go whilst I can.

 

Kimmy - I think SP is right about keeping a daily log, I certainly wouldn't remember to tell my oncologist everything - I've usually forgotten things the day after at the best of times. I'll know after my next oncologist appointment on the 15th whether she finds it useful or not - but I can't think of any reason she wouldn't. I am going to use SP's tip of keeping my hand warm before my next chemo, I was well hydrated but hadn't realised my hand was cold, my veins hid for a while until the heated cover my chemo nurse put over my hand warmed it up enough to get the vein on the 2nd attempt. It's certainly a learning process all the way but with everyone pooling tips of what works for them we can make it a bit easier for all.

 

Ruth - Good luck for Wednesday, it is difficult, all we seem to do is wait - whether it's test results, surgery, chemo, side effects. All i'm waiting for now is to get this whole thing over and done with so I can get off the carousel for a while.

 

Louise - I hope you have managed to find help and information on some of the other threads. Sorry I can't help you myself on the type of bc you have but I will, and many others will be able to offer support as you continue your treatment. I hope your recovery after your op continues to go well.

SP
Member

Re: Hello my name is kimmy2

Hi Kimmy, 

Welcome to the May thread. I’m sorry that you are also about to have chemotherapy. It is a scary place to be. Do you know what regimen of drugs you are having, as I think that there are lots of different ones? 

 

I have also had a radical mastectomy and I started chemo last Friday. So far, I am ok just very weary and sickly, like permanent indigestion. I have made myself go out for a gentle walk each day as I really think that his helps with fatigue levels and also gets your circulation going. 

 

I am also keeping a chemo log each day which has columns for my temperature, symptoms, drugs taken and exercise done. I will take this to show my oncologist on each clinic visit, as it helps with the discussion. I’ve had ovarian cancer before and did this then and the oncologist actually thanked me as he found it so helpful!! 

 

The best tip I can give you for your treatment day is to drink lots of water beforehand. You need to be well hydrated as this helps the nurse to get the cannula in easily. Also, I warmed my hands before I left home and kept my hands warm as this also helps if the cannula is going in your hand. However, on Friday my cannula went in my arm, as the drugs were syringed into it by a nurse. This doesn’t  happen with all the chemo drugs, so may not happen to you. 

 

I hope this is helpful?

 

SP

x

Member

Hello my name is kimmy2

I'm from Dominica,and I recently got diagnosed with breast cancer.i had a radical mastectomy done about a month ago and am about to start chemotherapy on Tuesday the 7 2019.i could really use some help with some tips and ideas.its all really new to me and I interested in knowing more about the experience.

Member

Re: May 2019 Start

Dear Louise

 

I don’t have my full diagnosis yet, as my treatment is starting with chemotherapy. Although this term hasn’t deep mentioned yet to me. I am sure there will be someone who can help.

 

i hope you are recoverying well from your surgery.

 

love Ruth xxx

Member

Re: May 2019 Start

Dear SP

 

well done for getting through it and thank you for updating us, it is helpful to know and reassuring (although I know we will all react differently).

 

I hope you continue with this positive start and that you are resting and comfortable.

 

I am one week behind, as first session planned for the 8th, it really is surreal, wanting something to get started, but dreading it also.

 

take care

love Ruth xxx

 

SP
Member

Re: May 2019 Start

Hi all,

 

So, the first chemo is over. Drugs were syringed into the cannula by a nurse. I was given brownie points by the nurse because my veins were plump and good....all down to the water I’d drunk during the day as my chemo didn’t start until 5pm!!! The treatment took about 1.5 hours so that’s a result!!! 

 

I’m actually feeling ok this morning. Had a restless night and today I feel weak and a little bit sickly but it’s very mild. I’ve just  made myself go for a gentle walk in the park, as I know from my previous chemo in 2012 that getting your circulation going really helps to rid your body of toxins. So, even if you don’t feel like it, try a walk!!! My husband came with me in case I keeled over!!!  I’ll rest now. 

 

SP

Member

Re: May 2019 Start

Hi

Just had my tests results back after surgery.  Found out I'm Triple Neg.  Anyone else here TN?  I have to wait till 21st May to see my oc before I can find out anymore.  

Thanks

Louise

Member

Re: May 2019 Start

Gilly001

Gutted!!! I bet that is putting it mildly, this really is a horrible disease isn't it, I don't suppose we are ever free of it just hoping it doesn't come back or at least not for a long time. I know chemo has no guarantees but we all hope it will work for us. I don't know, I can't shake it off that it will return for me or maybe i'm a bit paranoid but my onc was particularly focused on preventing recurrence in my bones hence the bisphosphates. You have one heck of an inner strength and determination, I have no doubt you will fight this again.

I don't know how you found your regime last time but if it was ok then I hope it will be again and if it wasn't I hope it will be different this time for you.

I'm sure we'll all get to know each other more as this month progresses. I wish you all the very best and will be around here to offer support when you need it.

 

SP - I hope your chemo went well for you and side effects will be kind to you i.e that you don't have any. Glad your ECG was good, at least you know your heart is in good shape and that your onc was able to give you the answers you needed to make your chemo decision. I think we're all full of fear even if we think we're doing the right thing, I know I certainly am. Keep well and look forward to hearing from you when you feel able.

 

I'm still feeling good at the moment - I had my 3rd Zarzio injection last night, hubby was rather smug when he had to remind me that I hadn't had it (I had totally forgotten about it), I think he was still peeved that I'd given it myself the night before as he'd fallen asleep and he feels it's his job, never mind there'll be a few more yet.

 

Joemic x

Member

Re: May 2019 Start

Good Morning lovely ladies.

 

I'm new to this thread but not new to this horrendous nightmare.  I will just give you some info on my journey so far.

 

I had bi-lateral breast cancer in May 2014, lumpectomy on both breasts - clear margins, sentinel lymph nodes were negative, but found HER2+.  Had 6 cycles of Docetaxel, Carboplatin plus Herceptin.  Last Chemo October 2014. 3 weeks of daily Radiotherapy plus 5 boosters. Weekly Herceptin injections last one June 2015.  Annual mammograms all negative.

 

March 2019 felt poorly fatigue very lethargic, feeling nauseous saw GP did bloods, Enzyme levels were high possible bone or liver?  Pain under right breast transferring to right side.  Referred to hospital, suspected Gall Stones. 

7 April had ultra sound - no Gall Stones but diagnosed Liver Cancer - wasn't expecting that - absolutely gutted!

10 April had CT Scan chin to pelvis. Results showed its only in Liver.

29 April saw oncologist he wants to start treatment 6 cycles every 3 weeks Docetaxel, Herceptin and Pertuzumab.  Then Doxetaxel will stop but continue with the other 2 until they stop working.  Then apparently there are other treatments......????

2 May heard that I will have biopsy next Wednesday.

 

So the journey continues, I got through it last time and am determined to fight it again this time.  At least I know what to expect this time. 

 

Support from this forum was really helpful.

 

Good luck, hugs and best wishes to us all!

 

Gilly01 x

Member

Re: May 2019 Start

Good morning everyone

 

its good to hear your positive news on day 7 Joemic. Gives us all some optimism 😊

 

We will be thinking of you this afternoon SP. I really hope you do not get challenging (or any) side effects.

 

lots of love Ruth

xxx

SP
Member

Re: May 2019 Start

Hi ladies,

My ECG and heart scan were good and yesterday I saw the consultant again to discuss the Onco results and risks of chemo. I asked lots of questions! He gave me some powerful data and evidence which has convinced me that chemo is the right route to follow. The risks of NOT doing it certainly outweigh the risks of the Chemo. 

So, this afternoon, the Chemo starts.....whilst I’m full of fear, I now believe it is the right treatment for me. This, at least helps with the psychology of the whole trauma.....

 

SP

xx

Member

Re: May 2019 Start

Hi Ladies

Hope it is going well for those who have just had their first chemo. I'm day 7 today and am feeling largely back to my normal self - I have managed to stay awake for the full day.

 

SP - I hope the results of your ECG was good and your all set for your chemo for tomorrow (if you made the final decision as to whether to go for it or not), sending you positive vibes that it goes well with very minimal side effects.

 

Joemic x

Member

Re: May 2019 Start

Hi  RuthG

 

I agree the waiting is horrendous, I had to wait 4 weeks to see the oncologist after my 2nd wle to get clear margins (did see the surgeon after 10 days for follow up who then refered me to the onc). Then had to wait another 3 weeks until results of onco test came back. I was frazzled and desperately hoping chemo wasn't on the cards but when the score was 40 my hopes kinda crashed around my ears. Mind you when I got the results my onc had booked me in for my first chemo the following week - that roller coaster ride was sure fast and going up and down rapidly.

 

Wish I could say I feel better now I've had my first round but I can't - I'm still shocked at the amount of drugs being pumped into me - I rarely even took a paracetamol before so am having to adjust, not doing it quietly though LOL.

 

Louise - so sorry you have a recurrence, the one thing none of us want, life seems so unfair at times. Did you have to have chemo last time? It must be dreadful for you having to deal with the darned thing again. You kicked it's a** last time and you will do so again this time.

Member

Re: May 2019 Start

Dear Louise

 

what awful news, I’m so sorry you are back in this situation. I hope you are recovering well from the operation.

 

when will you find out what your plan is?

 

I can not get over the effect the waiting has.

 

love Ruth xxx