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May 2019 Start

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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

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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

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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.

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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

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Re: May 2019 Start

Hi Everyone

New to the page.

 

I battled breast cancer 15 years ago, but now the bugger is back - it was such a shock - same side as well. 

 

Am 4 weeks post op, now waiting for chemo.  My 1st oncology appt is 21st May - had hoped it might have been a bit sooner.  Not that I am eager to start chemo, but I'm keen to know what my treatment plan will be.

 

Louise

 

 

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Re: May 2019 Start

Dear All

 

The good news.....I now have my plan. 3 cycles of EC (every 3 weeks) then 12 weeks of weekly paclitaxel (Taxol).

 

The bad news....The current start date is 14th, when I had been told the 7th or 8th. I find this waiting almost unbearable, especially as there is an indication that it is fast growing.

 

i hope everyone else is getting through theirs as smoothly as possible.

wishing you all positive processes.

 

xxxx

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Re: May 2019 Start

Hi Ladies

I hope you are not feeling too bad, I don't want to sound patronising but to be honest I find it difficult to find the right words to use during this difficult period of our lives - one none of us wanted that's for sure.

 

Alice53 - good luck with your 2nd cycle tomorrow - I hope it is kind to you.

 

Cheryl - like you I am having chemo every 3 weeks, I think I'm one week behind you my 2nd is on the 17th.

 

SP - Good luck for your onco appointment tomorrow, I hope you get the answers you need. Great tip about warming the

hand up, wish I had known before I had my first bout as my veins decided to do a bunk, had to sit with a warming blanket for 30 mins before she got the canula in on the 2nd attempt. Will be keeping it well wrapped up before my next one.

 

Imi2505 - I understand your dilemma, I considered cancelling as well, just the thought of my onco score being 40 kind of pushed me into it. What steroids are you taking? I had 6 an hour before my chemo but wasn't given any for after, I've got another 6 to take an hour before my next one but that's it. I know what you mean about friends of friends, the only thing this served was to greatly increase my anxieties.

 

RuthG - hope you get the details you need from your appointment. I'm just a little in front of you - am on EC for 6 cycles. Happy to help you if I can.

 

Jemima - I hope you have managed to get an answer to your question regarding the test. I myself had the oncodx test on the nhs as I met the nhs guidelines. 

 

NatLaw - Sorry to hear you found the cold cap painful. I made the decision not to use it for that reason and the fact that I thought my body was being punished enough - not that I am happy about the prospect of losing my hair, far from it but will just have to go with it.

 

Generally if it helps anybody, apart from being shattered I have had very little side effects from the first round of EC, have had indigestion but that is settling down but thankfully no nausea and vomiting - I really am a wimp with that, I can tolerate pain more - not that I want to LOL. I'm just hoping that as I got away with the nausea and vomiting the first time I'll get away with it the rest of them, fingers crossed. I really feel for anyone who suffers that horrendous side effect.

 

Joemic x

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Chemo side effects

Had my first chemo treatment last Wednesday. Had nausea over the weekend but a week later I now feel ok. Should I expect anymore side effects before my next treatment? Will I feel worse after next treatment? 

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Re: May 2019 Start

Unlucky indeed! 

I’ve also just had the BRCA gene test and am awaiting results to see if I have the BRCA2 mutation. This info is needed, as it could mean Carboplatin will be added to my chemo regimen later on. If I do have it, I will also probably need a second mastectomy after the chemo! Terrific!!! 

 

My  chemo drugs  are different from last time. I am having EC for 3 cycles then a 4/5 week rest for the body to recover. Then, 9 weekly cycles of Taxol (and Carboplatin if BRCA 2 ) These last two are the 

Chemo drugs I had last time....but I didn’t have weekly treatments last time....they tell me that there are fewer side effects with weekly Taxol but the down side is that you have to go to hospital every week....I find this very draining. 

 

My oncologist is lovely. I requested a second consultation prior to chemo, as I am very anxious about the cumulative risks of having chemo again. I have to be sure that the long term benefits are worth the risks. 

 

SP

x

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Re: May 2019 Start

Oh bless you SP

How unlucky to be grabbed by cancer twice. It must be very disconcerting facing chemo again as you know what to expect. Do you think it will be the same meds or different, with any luck there has been advances in managing side effects better than before.

I am only one week in front of you, so will hopefully be able to rally each other along through this journey. Most people seem to be having FEC or FEC - T whereas I'm having EC, don't understand why as I'm not familiar with the terms yet.

I haven't had any tests (apart from the diagnosis ones) before starting the EC, only had bloods for hormone levels taken immediately prior to them giving me chemo - I found this strange as i'm er+ 8/8. I think oncologists all have different ideas - I just hope they are for our benefit.

Hopefully by the time I see my oncologist next I will be more prepared and my head will be in the right place so I can remember to ask the questions I need to.

Good luck for tomorrow

Joemic x

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Re: May 2019 Start

Joemic,

 

Well done on getting through your 1st chemo treatment. You have had a lot to face since February so there is no wonder that your mind is in a muddle!

If it is any consolation, you are not alone.  I am in a very similar situation. I have an ECG tomorrow, bloods and consultant appointment on Thursday and 1st chemo scheduled for Friday.....scary. I’m still shocked that chemo has been advised and still have lots of doubts and questions for my oncologist. Unfortunately, I also had chemo in 2012, for ovarian cancer, so this is the 2nd time I’ve experienced this trauma. Believe me, doesn’t help! 

I hope that you cope well, as you embark on what is undoubtedly a physical and emotional roller coaster ride...

SP

x

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Re: May 2019 Start

Hi All

Not sure I am doing this right but thought I should join the May starters. I had my first EC last Friday (26th) but seeing as though it is near the end of April I thought May would be best. Apologies as I am rambling a bit, suppose it's still the shock sinking in, a bit about my journey - diagnosed end Jan 9mm grade 3 idc. WLE 7th feb and snlb (nodes clear) had further surgery end of feb as ink was on one side. No evidence of cancer on the second cavity shave.

Recieved results from oncotest on 18th April - score 40 hence the start of EC last friday.

 

I decided not to have the cold cap as I thought I was being hit with a lot of meds (I'm having bisphosphates as well) and I'm not good at taking meds at the best of times - I've always muddled through the pain and only given in when absolutely necessary. Not that I want to lose my hair, I really don't but I don't want to punish my body more than I have to.

 

The EC didn't affect me too bad, in that I haven't experienced the vomiting but have had stomach acid. I have been surprised at how tired I have been, sleeping a lot but I know I shouldn't complain as I feel I have got off lightly even though it was my first one. I've got the first of my 5 injections tonight (Zarzio I think), that was a surprise to me as I wasn't aware I would be having them. So much to take in, suppose I will get my head around them soon.

 

Sorry to ramble on, I wish each and everyone on here all the best for successful treatment and look forward to getting to know everyone.

 

Joemic x

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Re: May 2019 Start

1st Chemo yesterday, wore the cold cap.  Was fine right up until the last 30 mins when the pain was really bad.  I took paracetamol about 1/2 b4.  I felt so ill after it all, obvs done know if it was the fec but the headache and pain after has really put me off it.  I’m thinking the stress about losing my hair is worse than anything so I might just embrace not wear it and shave my head if needed.  I feel chemo is hard enough. 

 

I didnt expect to be do unwell yesterday as it day as it was only my first.  Don’t feel much better today either x 🤷‍♀️🤷‍♀️

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Re: May 2019 Start


@Jemima wrote:

Hi

I've been advised to have chemo which should start in May but am extremely reluctant for various reasons.  I was interested that two of you have had onco testing.  I don't think they did any tests for me apart from predict which the oncologist did with me.  My lymph nodes were biopsied during surgery and 2 were removed which were found to be positive.  I was told that they wouldn't do an onco test as it wasn't supported by NHS guidelines.  I'm aware that the NHS won't pay for the test normally when there is lymph node involvement.  I also know that it seems quite obvious that I need chemo.  I just wondered on what basis was the onco-test done in your cases or did you pay for it yourselves?  Whilst I can't afford the onco-test I'm desperate enough to pay for endo-predict.  

Thank you.


I was also desperate to avoid chemo particularly as lymph nodes were clear  but tumour was Grade 3 and 2.4 cm so though the Predict said it was borderline I went with it and woukd hope you seriously consider the same . It is not half as bad as I thought and does mean any stray cancer cells are less likely to cause trouble in the long-term 

k

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Re: May 2019 Start

 

 Hi I haven't had any side effects from cold cap - it is very uncomfortable for 10 minutes but for me the massive plus of not losing my hair outweighed that . It is thinner but no bald patches and my third FEC chemo is on Friday ... 

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Re: May 2019 Start

Hi Debi

 

thank you for your reply and advice, if I decide to try it I will take these. 

 

I hope everything goes smoothly tomorrow.

 

love Ruth xxx

 

 

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Re: May 2019 Start

Hi Jemima

I know exactly what you mean about deciding on chemo or not .I had the ONCO  test which came back to 27. Mine was free on the NHS it was part of a research trial  for post menopausal women with less than three positive nodes (I had 2) and a tumor smaller than 5cm (mine was 3). It may be worth asking if there is any way you could get the ONCO test done through a research study. Good luck with the decision making. 

As my test was in the mud range where the benefits of chemo are not really cut and dried I decided to have it . But unfortunately I had neutopenic sepsis after one dose of FEC so decided not to have anymore, and I am now on Letrozole. 

It's a really hard time for us as there are so many decisions to make. I hope things work out for you. 

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Re: May 2019 Start

Hi RuthGr

 

I had the cold cap on my first chemo session and i found it ok - after first 10 mins you can't really feel it.  I did get an headache a couple of hours afterwards but not sure if it was cold cap related, i haven't had any other side-effects with it as yet.  Take a headband with you to protect your forehead and a wide tooth comb to comb through your hair after as they put a conditioner on your hair before the cold cap goes on.

It's worth giving it a go, i haven't lost any hair yet but i have only had my 1st chemo session - next one on Tuesday.

Hope all goes well

Debi

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Re: May 2019 Start

Dear Susan

 

thank you for the advice, I am wary of the cold cap option, as the idea of additional side effects like headaches etc really worries me. Have you found any side effects from the cold cap?

 

love Ruth xxx

 

 

 

 

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Re: May 2019 Start

Hi Jemima

 

I didn’t pay for my Oncotype DX test. I met the NHS criteria as Lymph nodes were clear and I was estrogen positive. 

Even with this test, I think that interpreting the results is far from straightforward! I’ve been researching and have even spoken with the Oncotype testers to try to understand my results. The % quoted are difficult to understand when weighing up the risks of cancer returning against the risks of chemotherapy....

 

SP

x

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Re: May 2019 Start

Hi

I've been advised to have chemo which should start in May but am extremely reluctant for various reasons.  I was interested that two of you have had onco testing.  I don't think they did any tests for me apart from predict which the oncologist did with me.  My lymph nodes were biopsied during surgery and 2 were removed which were found to be positive.  I was told that they wouldn't do an onco test as it wasn't supported by NHS guidelines.  I'm aware that the NHS won't pay for the test normally when there is lymph node involvement.  I also know that it seems quite obvious that I need chemo.  I just wondered on what basis was the onco-test done in your cases or did you pay for it yourselves?  Whilst I can't afford the onco-test I'm desperate enough to pay for endo-predict.  

Thank you.

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Re: May 2019 Start


@RuthGr wrote:

Hello

 

I was due to have a mastectomy on Monday, however the plan was changed yesterday and will now be starting chemotherapy in May, my first one is due to be w/c 6th May.

 

I had done all my reading about the surgery and am now trying to catch up re chemotherapy. I don’t know the details of my plan yet, have an appointment next week which should provide the details.

 

I would also appreciate advice and will share any that I find.

 

best wishes to all.

Xxx


Hi my advice would be try the cold cap and get a wig on standby . I am heading for third FEC chemo ( the one which has worst impact on Hair ) this Friday Day 42 -  so Day 37 today and still have about 85 per cent of Hair . It is not for everyone but do think about it . Also prepare to be very tired 

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Re: May 2019 Start

Dear SP

 

thank you so much for the advice, I have started to look at wigs and headwear now. I have some time to try and get this ready. I will definitely increase the water and it’s a great tip about my hands, they are always cold and whenever they need to take blood it’s a bit of challenge.

 

My appointment with the oncologist is late on Wednesday so should have more details then. 

 

I hope all goes well for you next week. 

 

Love Ruth

xxx

 

 

 

 

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Re: May 2019 Start

Hi Ruth, 

 

I’ve been doing LOTS of research on chemotherapy and how to support the process to reduce side effects. I am happy to share when you know what regimen you’re going to be on. 

I’m seeing my oncologist on May 2nd to discuss my treatment again. Chemo start May 3rd, all being well.

I’ve  sorted my wig this week, as it’s best to do this prior to losing your own hair...if you’re going for this?

I’ve also bought some soft headgear, as your head can be very sensitive when you lose your hair. Last time I had chemo, you could have fried an egg on my head for 2 weeks after losing my hair! 

The advice of keeping well hydrated is good. You need to drink as much water as you can manage during chemo and after.

Also, a good tip prior to chemo, is to keep your hands warm, as this helps the nurses to get the cannula in.....your hands can get cold if you’re stressed! 

Good luck.

SP 

 

 

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Re: May 2019 Start

Hello

 

I was due to have a mastectomy on Monday, however the plan was changed yesterday and will now be starting chemotherapy in May, my first one is due to be w/c 6th May.

 

I had done all my reading about the surgery and am now trying to catch up re chemotherapy. I don’t know the details of my plan yet, have an appointment next week which should provide the details.

 

I would also appreciate advice and will share any that I find.

 

best wishes to all.

Xxx

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Re: May 2019 Start

Hello, I was a May starter in 2017 and after 8 rounds of chemo, surgery and rads all is good.  I was stage 3 at diagnosis so I hope this gives you some faith that you can get through this. 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/

You can also ask the nurses on this forum if you have any concerns.  In the meantime, 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...

 

Best wishes xx

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Re: May 2019 Start

Hi SP

I completely understand your delema SP. I had a mastectomy in November and lymph node clearance in December. I had two positive nodes. My ONCO score is 27, I was advised to have chemo FEC-T. I was very unsure as the side effects seemed daunting especially the long term ones. But I decided to do it anyway. I had my first dose on 20th February and 6days later developed neutropenic sepsis, I was hospitalised for four days. I reassessed my risks and benefits and decided to stop chemo, I am now on Letrozole and so far feel fine. I am 65 so my five year benefit from chemo was only 1% it does get more over the years but I felt my risk if dying from sepsis was too great to risk any more. But we are all unique and the other ladies in the February thread have coped very well with side effects, there is only one other lady who has had sepsis but she bravely has carried on with her chemo.

I hope I have not made the decision harder for you, but I think it's good to know how others have been affected and how they make decisions based on theri experience.

Good luck I hope whatever you decide to do will work out for you. 

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Re: May 2019 Start

Hi, I’m new to this site so apologies if I’ve posted this wrongly.  

I’m on day 6 of round 1.  Had my first chemo Monday just gone.  I was seriously considering cancelling it and refusing to have it.   My onco dx test showed low probability of the cancer returning(lumpectomy and lymph node removal early March), But 4 rounds of chemo advised as it will give more protection,  and i’m 46 so my age played a factor.   

Also had a port put in and that has been possibly the worst part of round one,  uncomfortable, and bruised from it.   I’ve had on and off feeling nauseous and very tired, but have been doing ok.  I didn’t realise the steroids would affect my sleeping so 3 nights on continual waking were awful, but now taking melatonin and the steroids are only for 3 days(for me) after each round.   

Im bracing myself for hair falling out,   I am using cold cap, mainly because I have 3 girls and they are really not happy about me losing my hair,  I also went wig shopping yesterday,   

Its a massive journey and a long way to go,  it’s good to hear other people’s stories and particularly other people that are going through it now,  I’m actually fed up of hearing about ‘friends of friends’ that went through it a couple of years ago(I know everyone is well meaning, but my tolerance is at zero).   

My next round is 7 May,  good luck to those making the decision over whether chemo is right for you,   

 

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Re: May 2019 Start

Hi, I have popped over from December thread, just finished my FEC-T. I was very fortunate with it. I found I felt tipsy the afternoon after FEC, then extremely tired and no brain days 3-5 (not enough to read or listen to radio even!) then gradually picked up energy and usually OK by day 7. T didn't make me feel tipsy, but made my taste go iffy (not too bad though) and still got the tiredness. The first T cycle I was very achey, but was OK the other two. I lost my hair after 2nd FEC (didn't cold cap). And I put on 2 stone 7lb thanks to steroids!

If you are on FEC, try to get Emend as an antisickness, it's the best one out. They'll give you other stuff as well, but that's the best (but expensive!)

Oh, and take some mints with you for FEC, the C gives a weird taste and sucking mints helps.

Good luck, the first one is the worst because you're not sure what to expect. I found the tiredness lasted longer as I went through cycles, but other side effects improved. You can do it!

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Re: May 2019 Start

Hi SP    chemo is no easy option, i felt it was Hobson's choice.  Perhaps  ring your breast care nurse and talk things through again, no harm done that way.  I'm not up on other regimens, only done research on my own so don't know about letrozole. I'm 65, with lymph node involvement on one side,  CT scan showed up a lung nodule that might or might not be a secondary, chemo should reduce it if its a secondary, no change if its benign. Not suitable for biopsy. I do 3 cycles then a repeat scan and hopefully know more what is happening in my body.   best advice i can give is ring and speak to someone you need to be sure in your mind that you are making the right decision for you.     Al      

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Re: May 2019 Start

Hi Cheryl, 

I’m sure you’re as scared as me.....I’ve been here before but that doesn’t help!!! However, I do research a lot as I believe that this helps me keep a tiny bit of control. 

 

My advice, for what it’s worth, is to make sure that you are well hydrated on the day of chemo. It makes getting the cannula in much easier. Take a Kindle to read as it’s hard to hold and turn the 

pages of a book.

Then make sure you drink LOTS of water every day to help flush out the toxins. I also walked most days for this reason too...and it helped a lot. 

Good luck.....

xx

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Re: May 2019 Start

Hello 

I'm starting my treatment on 9th May - it's going to be every three weeks for six sessions. 

I have no idea what I'm doing, or what I should be doing to prepare for it all - part of me thinks that I should be out having the best time I possibly can before it all starts, and the other half of me thinks that I should be drinking spinach smoothies and going to bed sober and early every night! 

 

I'm sorry I can't help with your questions SP, but at least we're in a little gang of three (so far). 

 

Sending you both lots of sunny good vibes. 

Cheryl x 

 

 

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Re: May 2019 Start

Al, 

Thanks for replying. It’s good to hear from someone who’s in the same position as me....this feels a lonely place right now.

In truth, I’m seriously considering cancelling the chemo altogether. I’m oestrogen positive so can have Letrozoke. But,  I’ve trodden this chemo path before in 2012 after surgery for ovarian cancer, The cumulative effects of chemo are significant. I’ve had a mastectomy and have no cancer in my lymph nodes. The Oncotype DX score is 33, which JUST puts me in the high risk band for recurrence in 10 years.... hence advice of trying chemo plus Letrozole. I’m not sure there are enough benefits to balance the serious risks involved for my future health and well being?

Hope I’m making sense? My brain is frazzled with all the “what ifs” at the moment.

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Re: May 2019 Start

Hi SP  my second cycle is 2nd May, today is day 10 of cycle 1.  Popped in to say anything with ginger has been brilliant.  Coffee tastes foul but tea tolerable - taste generally affected, hoping that will reduce as the days go by. Have not been nauseous but getting bad wind both ends!!!  Rennies/gaviscon good.  Needing to nap like the grandchild.    Wishing you all the best.

on herceptin, pertuzemab, docetaxol   HER2+

Al

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May 2019 Start

I am starting chemotherapy on May 3rd. Is anyone else due to start in May? 

I am trying to find any tips and advice for reducing possible side effects and have read that fasting pre and post chemo may help?