61166members
322506posts
cancel
Showing results for 
Search instead for 
Did you mean: 

May 2019 Start

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

Member

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

 

 

Member

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

Member

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

Member

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? 

SP
Member

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

Member

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

SP
Member

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

Member

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

Member

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 🤷‍♀️🤷‍♀️

Member

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

Member

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 ... 

Member

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

 

 

MBJ
Member

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. 

Member

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

Member

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

 

 

 

 

SP
Member

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

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!