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December 2016 Starters

Daisy62
Member

Re: December 2016 Starters

Well rang my BCN yesterday and she's arranged for them to scan the lump on my breast as well as under my arm... plus it's been moved forward to tomorrow rather than Friday.
I also asked her about picc lines and she said they prefer not to use them because of the infection risk and usually just take everything out after your chemo session. Not sure if I'm pleased about not having something attached to me all the time or worried about the pain of having needles stuck in me all the time 😕
Cookiepuss
Member

Re: December 2016 Starters

Hi everyone

 

Hope there's room for a new member as I feel like I need some support now on this horrible journey.

 

In summary, found lump and subsequent tests/biopsies have shown that there are 2 lumps (one is 2.5cm, the other 1cm), HER2 positive and ER/PR positive with lymph node involvement, Grade 3.

 

Treatment is chemo, surgery, rads and Tamoxifen.  I have my pre-chemo discussion with the nurses tomorrow and then hoping (well, actually not hoping but know I have to do it) for treatment to start either this week or next. 

 

Chemo treatment plan 6 x FEC-T with Pertuzumab (Perjata) and Herceptin.

 

Hello to everyone who is starting their treatment this month and hopefully we can all share our stories and worries and get through this together.

 

 

 

fiddlercrab
Member

Re: December 2016 Starters

Thanks again Sue, I will definitely chase this up. The nurse who was there at the diagnosis/here's-the-plan meeting was lovely, but there was a different one at the oncologist appt who barely spoke.

 

Had my MRI this afternoon. Interesting experience! Also got shock when I caught a side view of my boob in the M&S changing room. How/when did it get so deformed?! How did I not notice before? I can almost see the lump growing before my eyes. I am kicking myself for not catching it sooner while simultaneously knowing there was nothing there a couple of months ago when I got elbowed in the exact same place and felt nothing when I rubbed it.

Sue H-S
Community Champion

Re: December 2016 Starters

Hi Daisy62,

It is important they find out what the lump is, because you start chemo. If it is an infection of any kind or a build up of too much fluid, they may have to delay/drain. Because of the operation you had it can be difficult to determine exactly what causes the lump, hence the scan.

And yes! - Please mention the little lump under the scar on your breast, too. Most of the time, the lumps, bumps and swelling, which occur post op are nothing too much to worry about, but they need to be mentioned, as they may affect the treatment plan, depending on what they turn out to be. 

Good luck with the scans

Hugs

Sue xx

Daisy62
Member

Re: December 2016 Starters

Well I've now been booked in for a scan on the 2nd, 5 days before my chemo starts to check the large lump under my arm... oncologist said something about a possible haematoma but the fact that he's sent me for a scan has me worried. I also have a marble sized lump come up under the scar on my breast... it's a bit painful too so now I'm wondering whether to mention that too and have it checked out. God it's never ending 😕
Sue H-S
Community Champion

Re: December 2016 Starters

Hi again, fiddlercrab

In most areas the breast care nurses tend to work as a team, but you should have a main contact name to access them, if not - ask for one. And if you have the opportunity meet with here/him, so they can get to know you. They should have been present when you got your diagnosis, should be present when your treatment is discussed - and should be there to support you the moment you come out of those appointments to answer any further questions you have. If you need support in other areas to help you manage through chemo, etc - they should also be able to highlight services in your area to access for help.   Breast Care Nurses are there for you all the way through your treatment as a central reference point, as they have access to your treatment team. From a medical point of view the chemo nurses may take over, but not from the point of view of supporting you throughout your cancer journey. Most BC nurses are funded via Macmillan. As they are not specialists in a specific discipline their rold is more that of support and coordination, rather than answering specific medical quesions.

As an example - when I was worried about specific symptoms related to my chemo - I called the chemo nurses or chemo helpline. However, when I was not sure, whether I was developing lymphoedema - I called my BC nurse for advice. She then organised for someone to call me back, but thankfully I was ok on that front.

Although I am now throught active treatment - I have some pain in moving the arm on the operation side, I did all of the excercises and have a full range of movement - allbeit, with some pain - so she has sorted a physio referral for me.

I hope this helps a little to understand the different roles.  

fiddlercrab
Member

Re: December 2016 Starters

Thanks Sue

 

I don't actually have an assigned BCN, at least as far as I am aware. They said something about working as a team of 8, and I also got the impression that since I had been signed over to the oncology part of the hospital (rather than the breast care part of the hospital), they wouldn't be involved as much until I came back for the surgery later, and that the chemo nurses would take over. I will check on Friday at my preassessment appointment as to who to call for what.

 

Now that you mention it, the oncologist did say something about being around during the first chemo, but in a "I'll pop in and say hi" kind of way. It is good to know that there should be appointments with him as I go through - something else to check on Friday!

Sue H-S
Community Champion

Re: December 2016 Starters

Hi Sudzi,

I did not have the T... - I had FEC all the way through. However I can tell you that there is no better or worse chemo treatment to have.

The T can cause allergic reactions easier, so your steroid dose may be increased. It also is suggested by many to start taking over the counter antihistamines from about a week before treatment, such as Clarytin or a cheper generic version of it. But not to be taken on the day of treatment. Aching bones are reported by some, however it seems they get control over that with paracetomol. 

Always remember - most postings you may read are about negative effects, as these are the ladies looking for help, advice and support. You rarely read posts from people, who get on well with their treatment - which may make things seem worse than they actually are.

Hugs

Sue x

Sue H-S
Community Champion

Re: December 2016 Starters

Hi fiddlercrab,

It usually takes about two weeks to get your results back. My suggestion would be to phone your assigned Breast Care Nurse and ask her the relevant questions, i.e. whether further appointments have been booked or whether they will contact you with an appointment when the results come in.

Usually everyone should see their oncologist a few times throughout the chemo treatment. They will check how you are getting on with it and prescribe the next rounds.

Although most of you have your treatment plan in place - it is the plan, but individual rounds of chemo still will need to be prescribed by the oncologist. Sometimes, just sometimes - there may be some adjustment to the chemo - changing the type of drugs or quantity - especially further down the line. Hence the appointments to check how you tolerate your treatment.

Hugs

Sue x 

WMJ
Member

Re: December 2016 Starters

Hi everyone,
I start Chemo on 8th December.
I am having 3 cycles of E&C then 3 cycles of Taxotere. Going to use the next week and a half, between appointments, to see people I want to see, get organised and enjoy my last few chemo free days. I am hoping to get away for a few days with my hubby too for some BCFDs, otherwise known as breast cancer free days! Extremely difficult as it is rarely out of our mind. However we tried at the weekend not to talk or read anything about it. For the most part it worked, as I turned my phone off and told people we were on a break. However reality has hit once again today as I have a CT scan later today. A worrying prospect but I know it has to be done as I have node involvement, 6/7 taken were cancerous. Inspite of all the reassurance I am not taking anything for granted as I never thought I would find myself here. A fact I know I am not alone in, as all you lovely ladies will feel the same. But here I am with you all and we should find comfort from the fact we will draw strength from each other and we all understand the turmoil we find ourselves in. Best wishes to you all. X
RobinJ
Member

Re: December 2016 Starters

Hello Sudzi.  I'll be interested to hear how you get on because this is what I am having - three rounds of FEC, then three of T - although I haven't started yet.  You are not a wimp for worrying in advance!  I'm the same - I keep reading all the scary side effects and thinking I've got them even before I start!  But I also remind myself that not everyone gets all the side effects, and it's quite possible we'll be in that camp.  Good luck!  (How was the FEC, by the way?) 

Sudzi
Member

Re: December 2016 Starters

Hi everyone,

 

I am going to be having round 4 of chemo on Dec 9th. I've already had 3 rounds of FEC, but start this Taxotere next. I'm really anxious about this one as I've heard it's a lot worse than the FEC. Anyone know if this is true?

I feel such a wimp just now as all I'm doing is thinking about it. I'm not sleeping because I'm worrying so much. I've been told the side effects are awful.

Apologies for moaning!

Andreaj
Member

Re: December 2016 Starters

Hi everyone,

I am going to be starting chemo in a week or two so I think I belong here 🙂

 

I am actually looking forward to getting on with it even though I do understand that no one knows exactly how each person will react to the drugs and it wont be easy. Im trying hard to be optimistic and positive.

 

It would be good to have other people to talk to about it who understand which is why I am here X

 

I have been given two leaflets about chemo one is FEC and the other is Taxotere (docetaxel) so I presume that is what I am going to be treated with....treated with it sounds like it is going to be something lovely lol

 

Anyway I have lobular BC 2.6mm with lymph node involvment and am ER positive...

looking forward to giving and getting some support here

Andrea XXX

fiddlercrab
Member

Re: December 2016 Starters

Hi mummum

It's definitely the uncertainty that hits hard. When they said chemo first, it was such a relief to have a plan in place, but I just want to get on with it! But then more uncertainty starts rearing it's head and I am not a fan of uncertainty (I don't like surprises - not even surprise presents - I like a plan).

Sorry to hear about the new lumps, I hope they turn out to be nothing. Fingers crossed for you.

Mummum
Member

Re: December 2016 Starters

Hi Fiddlercrab,

 

I'm constantly amazed at how different treatment/processes are from place to place.  I hope it doesn't take too long for your results to come back but it is important that they get a good understanding of how your cancer works in order to ensure you get the best treatment.  I went through months of uncertainty and every time I went back to the breast centre it was more bad news.  This takes its toll after a while so I know how you feel.  Once you have all the results and a treatment plan is put in place I hope you will feel better about the whole thing, I know I did because in a small way I felt like I had some sort of control.  

 

I have now now found a lump under my jawline and one under my chin which my breast care centre is going to look at on Thursday after I saw my GP this week. I am really worried now that my BC isn't my only problem and that it has spread - more waiting and uncertainty!

fiddlercrab
Member

Re: December 2016 Starters

Hi all

When I saw the oncologist last week, he was still missing some of the biopsy results (PR was missing and HER2 was borderline and had gone off for further testing), and then last week I had a CT scan and MRI is tomorrow. My next appointment is the chemo preassessment nurses on Friday but I don't have further appointments booked with the oncologist. Does anyone know when I'll find out the results? I'm so anxious about the CT results and because everything has come back as bad news so far I am dreading that streak continuing. 

Sue H-S
Community Champion

Re: December 2016 Starters

Hi both,

Yes - you can! And you are likely to, lol. The mechanics may depend of how the FEC is administered in your unit. In my case - for the first chemo - I was given a strong anti sickness drug. I was then cannulated and IV steroids were admnistered in conjunction with saline solution. The steroids tend to be given to avoid any adverse, allergic reactions to the chemo. The three drugs from the FEC were then administered personally by a chemo nurse with a syringe into the cannulated line and was aso mixed with the saline from time to time. At the end I was left to my own devices for some more saline solution, before going home with a big goodie bag of medication - anti sickness, steroids and some other concoctions to make life bearable. All in all the whole session lasted for about 90 minutes. So, if you need to go - let them know - they can stop at any time and you simply have to roll the structure to which your saline drip is hooked along to take with you. It is all doable. Be aware your wee will be pink! - that is from the E in the FEC. 

Hugs

Sue xx

 

OrangeGirl
Member

Re: December 2016 Starters

Your fear is natural and you WILL get through it, you have no choice really. Sounds brutal but is true. I actually found once chemo was underway, I had a plan, a strategy, it felt like something was being done about it all. Much better than the waiting, that's the worst bit.
Mummum
Member

Re: December 2016 Starters

Hi everyone,

 

I received my start date for chemo today and will begin on 28 Dec 16.  All of a sudden this has become very real after what has seemed like a lifetime of waiting (I was diagnosed in Aug 16).  I am absolutely petrified about what is to come.

 

Take care

xx

OrangeGirl
Member

Re: December 2016 Starters

I had 6 x FEC and would be in the chemo unit for less than an hour. They just inject directly into your vein with a drip going, the drug isn't going through the drip. 

They'd usually come round with a cup of tea and a biscuit!

 

If you suffer from bad travel sickness or had morning sickness whilst pregnant PLEASE FIGHT AS HARD AS YOU CAN to get EMEND prescribed right from your first treatment. Beg, lie, do whatever you need to do.

I was very sick after session 1 with vomiting and they'll only prescribe it once you've been ill and not before (as it's an expensive drug) but the nurses told me they would reconsider if people suffered from other nausea inducing conditions. It transformed my experience after chemo, made such a difference. No vomiting on emend. They all know you'll need it for session 2 onwards but they can only prescribe it once you've been ill. Very mean.

 

I found I had about 2 hours after chemo to go and have lunch/visit friends/do something nice and then I'd turn into a pumpkin! I'd have to get home to bed.

 

Drink lots. Can always disappear to the loo!

 

Good luck, ladies. 

You WILL get through it .............

fiddlercrab
Member

Re: December 2016 Starters

Tights?! I intend to spend the next 4+ months in the closest socially-acceptable thing to PJs... (they've told me that my work is too much of an infection risk and to stay away)

 

JoJo45
Member

Re: December 2016 Starters

Hi ladies, just to say, yes you can shuffle to the loo at any time.  I was lucky as sat opposite the toilet so I could jump up when it was free 🙂.  You just take your pump with you on its wheels. Mind if you have a cannula in though, wear loose clothing that's easy to pull up/down.  Fiddly tights are not a good idea.  

Good luck with your treatments.  I'm having my second FEC next week 🤗🤗

fiddlercrab
Member

Re: December 2016 Starters

Ooo, that's a really good question RobinJ! From the info I got given, it sounds like for FEC you get the three drugs one after the other, so while they are changing might be an opportunity to shuffle off to the loo! 

RobinJ
Member

Re: December 2016 Starters

Thank you, Sue.  Very helpful advice.  I've got a question - is it possible to go to the loo while receiving chemo?  I know it takes a while to goin, but not sure I can last long after drinking two litres!

Sue H-S
Community Champion

Re: December 2016 Starters

Hi RobinJ and Daisy62

Welcome to the thread. I do hope that the information and the links at the start of the thread are of some help to you.

It you can - and have not already done so - may I suggest that you get any relevant dental treatment out of the way and see your hygienist before you start your chemo treatment. Oral hygiene is extremely important when going through chemo. It is not recommended to have any oral treatments whilst on treatment, due to the risk of infections and possibility of a low platelet count, which can lead to excessive bleeding.

Generally, a few days before you begin your chemo you should be invited to a chemotherapy information meeting. You tend to be given a lot of very important information. Please use this session to ask as many questions as possible and listen carefully to the advice you are being given. You should be given numbers for a chemo helpline. Please make use of this number, if you are experiencing any of the symptoms you should be made aware of. Generally a 'chemo card' is given to you. It may be wise to carry this with you at all times. 

Understandably the biggest worry tends to be the side effects and it is very difficult to say which ones you may or may not experience, even if you may be on the same treatment as others. It very much depends on each individual, as well as age and possible underlying health conditions.  

Please drink a minimum of 2 litres of water before attending your first chemo session and keep the arm warm, which will be used to administer the chemotherapy. This should be be opposite arm to where you may have had your operation, if you have had one. It will keep your veins 'plumped' up and will make the insertion of the cannula much easier. Some of you may already have had a PICC line or other port installed.

It is important to continue drinking 2 litres of water/fluid per day following the chemo, so it 'flushes' through and does have as little effect as possible on your liver, kidneys or urinary tract. 

I hope your journey through treatment will be an acceptable one. You will get through it!

Hugs

Sue x

 

 

  

RobinJ
Member

Re: December 2016 Starters

I'm starting my chemotherapy on December 14th.  Going to have six cycles of FEC-T.  Had surgery on October 28th and it was found to be in two lymph nodes.  Was diagnosed on September 23rd, so it already feels like it's been going on for a while!  Bit nervous about the chemo since there seem to be so many possible side effects.

Daisy62
Member

Re: December 2016 Starters

Hi I'm starting my chemo on the 7th. Had lumpectomy on October 17th, grade 3, lymph nodes fine, er+

 

I had the oncotype test and score came back as 43 so considered high. 

 

My treatment is 6 rounds of FEC

Sue H-S
Community Champion

Re: December 2016 Starters

Hi fiddlercrab!

Welcome to the thread. I hope the links in the first post are of some help to you. Having 'lurked', lol - on the November thread you can, at least, put it all into context. I wish for your that all will go well on your journey.

I also hope that your scans results are what you are hoping for. Let us know..

Hugs

Sue x

fiddlercrab
Member

Re: December 2016 Starters

Hello!

 

I'm due to have my first chemo (FEC-T) on 6 December, having been diagnosed on 15 November with a 3cm tumour with lymph node involvement. They're going to try and shrink it first before surgery because it's a bit straggly and badly positioned, so fingers crossed... Had my CT scan this morning and getting an MRI on Monday, so they're keeping me busy with appointments. 

 

I've been lurking on the November board, but things didn't move that fast!

Sue H-S
Community Champion

December 2016 Starters

Hi all

And here is the December 2016 chemotherapy starters thread!  Hopefully it will become a lively and supportive thread for all of you having to go through your various regimes of chemo. Please do not be too worried - you will all get through this. For some it may be harder than others, as side effects tend to differ from person to person, even if on the same regime. Sharing your experiences will help others, even if you never see them posting. It is also a great place to share your frustrations, ask questions, laugh, cry, rant and rave. I finished my chemotherapy and radiotherapy on 26th October 2016 and shall be 'lurking' to support you , where it may be relevant. 

Any side effects you do get please note them down for your treatment team. If they become too challenging and you advise them accordingly, they usually tend to adjust the accomanying medication to make your journey easier. Most side effects experienced in the first cycle are likely to be the same throughout, as long as you are on the same regime.

Here are some helpful links for you to prepare and support you.

Chemo preparation - 

https://forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Preparation-for-Chemo/m-p/10...

If you do not have a PICC or similar port installed and you are on FEC throughout - you may wish to ask for one to be installed. FEC is quite tough on your veins. This thread may be of help though for all of you -  https://forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Vein-Care/m-p/1036347#U10363...

And this one covers everything from food to make up and wigs - you may have to explore in more depth to find something specific you are looking for - 

https://forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Chemotherapy-Tips-and-Tricks...