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May 2019 Start

Member

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.

Member

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 

Member

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

 

 

 

 

SP
Member

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 

 

 

Member

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

Community Champion

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

MBJ
Member

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. 

Member

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,   

 

Member

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!

Member

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      

SP
Member

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

Member

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 

 

 

SP
Member

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.

Member

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

SP
Member

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?