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October 2016 starters

blueash
Community Champion

Re: October 2016 starters

If it is any consulation I should never have developed Breast Cancer. I have breast fed, never taken the pill or HRT. Very few are as health aware as I am. I was on the Grassroots Health survey (all about adequate Vitamin D have a google). Actually I am still on it and I am am "outlier" so they tell me. I eat fish and brocolli or salad most days, I am not overweight and if I was I would drop it by watching what I was eating. I excercise more than most - but I am not a runner as it a marathon or anything. I get lots of fresh air and have never been a smoker.

 

If I can get it anybody can!

Gracie
Member

Re: October 2016 starters

Lots of traffic on here since I last posted. Looking back on my last e-mail, I can see how it comes across as me beating myself up for "causing" the BC. I'm not really. There is no breast cancer in my family at all and I may be a size 16, but I eat very healthily and I'm fairly fit as I walk regularly (with dog) and I sometimes run. I cannot recall the last time I had a proper cold and can only recall one day off sick in many, many years. I can't see the point in donning the sackcloth for what has happened in the past, but I do need to devise a strategy for moving forwards. As Azara25 said, those with TN have to take more care. (Waves at Azara, being a fellow TNer).

 

I am in the same age bracket as most of you - 57 - so what we can surely say is that being female and of a certain age puts us at risk. As for HRT, my mother in law was on it for about 25 years without getting BC. 

 

Sue (Truey) and Suebond - good luck with the chemo this week. I have my second EC on Wednesday.

 

Skye, tiredness hasn't really been a major issue for me and I've been sleeping really well, so I can't offer any advice, unfortunately. I think we are all hit by different things. For me, it's been nausea. This time, I have been prescribed some Emend, so hopefully will avoid the worst of the nausea this time around.

 

Sue (Sus12), I'm sorry to hear about your daughter. I hope she is recovered/recovering well.

 

SueC, it's a tough time to be making changes, but on the other hand, something like this does give you the strength to do what needs to be done. I hope your move goes smoothly.

 

Fairycake, you are definitely not an oddball. We can all take comfort in the fact that many of us are going through similar thought processes. I have this visual image of the chemo beaching me clean - now that is odd! Perhaps being off work gives us far to much time to think. My husband reckons I'm happy about being off work simply because there is so much to think about and do in relation to the treatment that it is keeping the boredom at bay. He reckons I'll be rearing to get back to work when the treatment comes to an end. He may have a point. 

 

Angie, I'm so sorry you are feeling so unwell. Grit your teeth, my dear. You have one less to go through now.

 

OldDawn, it's day 13 for me today and I haven't lost a single hair. I bet it all comes out after my next chemo on Tuesday.

 

Best wishes to everyone.

 

Gracie xx 

 

 

 

 

OldDawn63
Member

Re: October 2016 starters

Hi Skye - I recommend getting your hair clipped short rather than shaved to minimise risk of irritation and sores developing. That's what I did. The downside is that while it makes the 'fall out' process easir to manage, you will still have some clearing up to do. Whichever option you choose it is best to have it done before the hair starts falling out, which could be any time (for me it started on Day 12 of the first FEC cycle and I didn't make it to the hairdresser until Day 15!). Apart from a minor itchy rash during the second cycle, which disappeared pretty quickly when I started washing the remains of my hair and scalp with aqueous cream instead of baby shampoo and applying E45 Itch Relief cream, I've had no problems. A word of warning - E45 Itch Relief cannot be used on broken skin, so it needs to be applied straight away as soon as any itching starts. It is effective (does what it says on the tube) and will stop you scratching, helping to prevent sores developing. Hope this helps you decide.

Skye
Member

Re: October 2016 starters

Hi Sue C and everyone else

 

Losing your hair is so hard - I've got an appt tomorrow to get mine shaved and wig fitted.  I'm upset just thinking about it.

 

I've still got a full head of hair, and I'm at Day 7 after Chemo - I don't know whether it's better to shave off before any SE's happen, ie. sore scalp, blisters etc, or whether to wait until it starts falling out.

 

Second FEC booked for 21/11/16 but I'm presuming that I will have some hair loss by then.

 

Big hugs to everyone

 

 

Skye xxx

Sue C
Community Champion

Re: October 2016 starters

I'm not sure why hair loss is so hard, but it just is. Lost most of my hair, week 3 into chemo, and now wear scarves all the time. Didn't go down the wig route as just wasn't for me. Am still really self conscious of it and can't even bring myself to look in the mirror(not very good at facing up to all this). And very difficult going out as feel all looking at me, even though people are not. Now after 4 cycles, really fed up with the scarf and looking forward to the day when it starts to grow back.

Hugs

Sue C. ( definitely a name from the 60's!)

Sus12
Member

Re: October 2016 starters

You're right Sue B. The point is to not beat ourselves over the head about why we may have ended up with breast cancer. Us women are too good at blaming ourselves for anything and everything! It has taken and will continue to take the experts years to work that one out! Hopefully there will come a day when all the research will come up with an answer. We've already benefitted from newer research and improved outcomes. Meanwhile we have an opportunity now to reflect on our lives and our lifestyles and health and find a positive way forward which will be as individual as we all are and resolve to look after ourselves just a little bit more whether that's work wise, health wise or just giving ourselves a little bit more 'me time' 🙂
Hair now starting to shed more so hoping my wig is ready this week! Despite everyone assuring me I'll still be beautiful anyway bless them I still had a little bit of a cry yesterday. I know it's something that happens and we just have to deal with it and to some extent I feel guilty for getting upset about something that isn't really a big deal compared to having breast cancer and going through the treatment but it's still so so hard 😞
Thinking of everyone,
SueF xx
suebond88
Member

Re: October 2016 starters

Good Morning everyone,

 

it's hard not to blame ourselves/our lifestyle/work/stress/HRT (to have or not to have) for what we're going through now.  But I believe that It Really Isn't Our Fault, and we shouldn't keep beating ourselves up.  We'll never know anyway....if we'd done this, ate that, didn't drink this....if things would have been different.  We CAN work towards making our future health and lifestyles better, and how we choose to do that is totally a personal thing.  What works for one may not for another.  All our bodies are different and process things differently - this is especially noticeable with all these se's affecting us all differently even though we're all being injected with the same sort of crap.  

interesting though that some of us are a similar age group.  I too am 58, 2 kids (30 & 28), no bc in family, didn't take HRT didn't breast feed (couldn't) - that was one of the questions I was asked in the early days of diagnosis, and you do start to think that maybe.... if only..... but there are so many of these randoms that no- one really knows.

angie, glad you managed a family gathering yesterday, but sorry to hear that your tummy sent you home. Managed some Christmas shopping yesterday, but found it exhausting.

having bloods  taken this afternoon and second FEC tomorrow - hoping nausea is sorted this time as they promised to change my meds.

good luck everyone If you're having/recovering from treatment this week.

thank you for your support and apologies for the bit of a rant.

sue Bxx

 

 

Angywd
Member

Re: October 2016 starters

Hi everyone

reading all the posts from yesterday I can relate to something in all of them, us women sure have it hard that's for sure!  I've been a single mum for 12 years, currently in an on/off relationship (on at the moment and going well although I am not counting my chickens....) and in the last 2 years took 2 promotions to try and increase my income to cover the demands of 2 teenagers.  Ex husband owes £27,000 in back child maintenance, been going through the courts for the last 10 years.  So I do believe that stress is a huge factor.  The same as many of you I felt my job was so important to me, was gutted when they said I could not go in in between chemo sessions.  I now realise how much better they knew how it was going to effect me than I did, I manage a large medical practice so the immune issues mean I cannot go in anyway...

li had my 2nd FEC on Friday, felt OK straight after and up until teatime Saturday when my stomach erupted, up all night Saturday and feeling exhausted and terrible indegestion all day yesterday despite Omeprazole and gaviscon.  I cold capped for both session, sadly losing lots of hair now, at least a third.  The worst thing is when I wash it, no matter how much conditioner or argan oil I add it just ends up with massive matted sections.  My daughter spent an hour going thru it and finally got them out with what looked like half my hair too!  I have enough still to get away with wearing a headband to hide the thinning top and sides but not sure how much will go next time I wash it.... 

I did attend a family and friends gathering for an hour Saturday afternoon with my wig on....felt very self conscious but everyone was lovely.   Had to leave as my stomach was giving me the warning signals!!

Preparing for a quiet week,... So tired! 

Love to all

Angie

x💞X

Azara25
Member

Re: October 2016 starters

Hi to everyone I've not been on for a while as I had 2nd chemo on Monday & have been feeling pretty rubbish all week ! 

Sorry to read some have been experiencing SE - this forum is so good for making you feel you are not the only one & also at offering solutions. 

 

I'm just on tonight as I want to wish everyone well for the coming week 

 

xxx

 

Gracie - I'm also TN & for our subtype of BC everything I read leads me to believe it is particularly important for us to take our diet, etc extremely seriously - but for now I can barely eat so that has gone out the window until chemo is over. I did eat well & exercise anyway & didn't drink, my only vice was a sweet tooth so I blame myself that I should have stopped those sneaky choc bars but I guess that's not really likely to have caused it & we all need to enjoy life don't we or else what's the point ?

 

I totally relate to always putting our careers & families first too & so for the first time in our lives we are having to get used to making ourselves the priority. It's hard when the other half can't seem to grasp that the kids need clean school uniforms every day though bless him !

Skye
Member

Re: October 2016 starters

Hi Fairycake, all the Sue's and everyone else!

 

I haven't been on HRT and I am in this club - I do believe the link exists but don't think that because you've opted for HRT that it's a given that you'll get bc.  It's one of those things that happens - you're not to blame Fairycake.

 

As you say, this is a journey that we are all on, we go to appts, scans, etc and proceed to the next step.  My next FEC is on 21/11/16 - still recovering from the first one.  Just seem to be so knackered all the time.  Feel okay one minute, start doing something and have to stop because I'm exhausted.

 

Does anyone feel the same?

 

Big hugs

 

 

Skye xxx

fairycake2
Member

Re: October 2016 starters

Hi all

I'm not a Sue, but of a similar age (58) and there were certainly a few Sues at school!

 Gracie, I was interested in your link with alcolhol, stress and cancer because I had never really thought of breast cancer as having many lifestyle links, but I've just been looking at it (i.e. Googling it)and of course you're right. My cancer is lobular and the very first thing the consultant asked was whether I was on HRT. Iwas, and had been for 7 or 8 years. I knew there had been a causal link established between HRT and cancer but had thought the risk minimal enough not to worry about it.  What it made me feel was guilty - perhaps I could have avoided cancer if I had been prepared to put up with the menopausal symptoms of night sweats and hot flushes. My point is about guilt - I've got cancer and I feel guilty?! What kind of s*** is that?  I think it's also possibly mixed up with guilt about going off sick.  My job is also very stressful (teaching) and the relief of not working has occasionally made me feel that it is worth having cancer to get this time.  Now I know that's mad, but honestly, the days when I feel normal are blissful and the lack of anxiety is wonderful.  No anxiety going through this because it is a process that you follow, you don't really have a choice.  You just go along to the next appointment. There's pain and tears and mourning - currently the loss of a breast, shortly, I suspect, the loss of my hair. But not really anxiety as my prognosis is good.  Of course, if it weren't, I would be feeling very differently.

Sorry, this is a bit heavy!   And probably I'm just an oddball.

Sus12
Member

Re: October 2016 starters

Hi Sue B.
You're right about the Sue name thing :D. I'm 57 and I had 2 other Sue/Susans in my class and have friends of a similar age as well. Either we have a popular name or we're just as common as muck! :D.
I feel very lucky too to have had my bc picked up early by a routine mammogram. No one else in my family has ever had breast cancer and I too have been more concerned up to now about heart issues as my dad died this time last year with a long standing heart condition and my mum has also had a heart attack. I for some reason never thought of the possibility of getting breast cancer. It was a total shock. My consultant and the oncologist said to me that there was no reason I had it and it wasn't my fault as I worried that I must have done something to cause it. I've always had a pretty healthy lifestyle. I also have 2 daughters and am now worried sick for them 😞
Good luck with your FEC on Tuesday. Mine is on Thurs. Not exactly looking forward to it but at least that will be 2 done 🙂
Thinking of everyone this week with appointments and procedures and just coping with the day to day stuff of life with breast cancer. Or just life!
Hugs to all,
Sue(F!) xx
Sus12
Member

Re: October 2016 starters

Hi Sue,
Yes I left after 30 years.... Quite a few times I was going to but stuff stopped me. Tried very hard with our relationship once the girls had left home but things just didn't work out sadly and he wouldn't ever admit there was anything wrong at all. When I told him I had breast cancer a couple of months ago he said well good luck with that. Ha! Definitely was the best move for me to go! I found it challenging at first. It is, but am now just married to a wonderful guy who has been amazingly supportive and caring. Even my daughters agree even though of courses they lovie their Dad. There is life after a bad relationship! As there is life after breast cancer! I'm now looking forward to a new life and new opportunities and moving on with a more 'normal' life after my treatment is finished.
Sue x
suebond88
Member

Re: October 2016 starters

Have just realised how many Sue's there ore on this thread - must be an age thing?  I remember at primary school (many years ago) there were 5  of us in the class!!

stress does (I think) play such a huge part in our lives - and we all deal with it in different ways.  I do not think that any of us should beat ourselves up about how we deal with it, and how we lead our lives.  I remember when I was first diagnosed both  my surgeon and Oncologist told me that ' it isn't my fault (getting cancer) nothing I did has caused it'.  Which of course, doesn't help matters much because I'm forever thinking what/how/why?  I'm lucky enough not to have worked for a good few years now, so I can't say stress has played a big part in my current lifestyle.   No female in my family has ever had BC - which makes me worry for my daughter.  I'm relatively fit and active but do enjoy a glass of wine every now and then.  This ##%%%% disease does not discriminate and I've no idea why it got me, however I will be forever grateful to the NHS  who picked up my lump in a routine mammogram at the beginning of September.

i am also very lucky to have a wonderful, supportive husband  of 38 years, who is doing everything in his power to help me through this.  I feel for those of you struggling in relationships at the same time as fighting this disease.  I think you have to do what is right for you and go with your gut instincts.

my BCN did tell me - when I asked about diet etc. - to have what you fancy when you want it, IF your body lets you, including a glass of wine every now and then.  Good advice I think.  

Just back from our first Christmas shopping trip as I know that the next 10 days or so will be a wipeout - next FEC on Tuesday.

hugs for everyone,

SueBxx

Sue C
Community Champion

Re: October 2016 starters

Thanks Sue x

You're right - he hasn't been there for me and he has made things much harder than they should be. However, after 20 years it's such a huge thing to leave and one minute it's the right move and then another I have a wobble! I do have friends and family supporting me so I'm not on my own.

Trying to be positive.

Sue x

Sus12
Member

Re: October 2016 starters

Hi Sue.
I feel for you. It might not seem like the best time but then I thought that for 8 years and should have gone earlier. My best friend said when I told her I had breast cancer she felt her stomach turn over as she said my ex would never have been there for me and she was right sadly. If it's the right thing for you you'll cope. You need people near you who love and support you at this time. Not make things harder. Have you got support from family and friends?
In a lot of ways this we're going through makes us stronger and does make us think about what is really important in life.
Big hugs,
Sue xx
Sue C
Community Champion

Re: October 2016 starters

Hi Gracie

I think we're all desperately wanting our lives to go back to how they were before but I feel now is a good time to assess things and maybe make some changes for the better. I enjoyed my job, but it was stressful and physically tiring, and am now seriously thinking about doing something totally different. Also stuck in a relationship that is essentially no good, and am moving out in a few weeks. Maybe not the best time to do this, but the bc has changed how I view my future.

Sue xx

Sus12
Member

Re: October 2016 starters

Gracie I hear what you are saying re feeling strangely more 'grounded'. I too was a person who loved their job but it almost completely consumed all my energy and left me very little time for myself at all as when at home my 2 daughters took priority as well as juggling huge amounts of paperwork. I was also very stressed in a marriage that I should have left many years ago but didn't and ended up stressed and struggling to cope with far too much on my plate especially when my eldest daughter was in her final year at uni and was diagnosed with psychosis brought on by stress from her studies. My world nearly fell apart. Now I'm dealing with this and like you feel that this time I must try and put myself first occasionally and give myself permission to do so but then that feels so alien to me :(. I'm not working at the moment until my treatment is over and I am trying hard to listen to my body now and make time to really look after myself not just everyone else for what my friends and family say is probably the first time in my life. I agree that it would be good to have a discussion about how cancer changes us and how we can move forward and yes this forum is maybe not the right place but it is so important a discussion to have.
Sue x
Truey
Member

Re: October 2016 starters

Hi Gracie and all,

 

My chemo nurse said definitely no spirits because they are too strong for our fragile gastric and oesophageal mucosa but wine is OK. To be honest wine tastes awful for the 14 days after chemo - so no loss to leave it alone! I have had a couple of glasses in the final week, though stopping 48 hours before the next cycle.

 

I really empathised with your comments about careers and shifting perspectives. I too have been very (possibly overly) career focussed and was in quite a senior role at the time of diagnosis. This has completely changed my views! Like you I'm on long term sick leave and the work that previously defined me, I am not missing at all. I'm a bit older than you and am seriously considering early retirement at the end of this. I've been forcefully reminded what us really important in this world. 

 

I had previously had my own business and gone through quite stressful times after a merger. I feel sure the stress took its toll since I don't have any of the usual key risk factors for cancer. In fact, I was convinced I would die if heart disease like my father ( strong family history) or dementia like my mother and grandmother. Cancer was not the hit I was expecting!

 

This site is invaluable to share our experiences. My next cycle, FEC 3, is on Tuesday so amazingly will have had half the chemo by then. The time does pass quickly and together we can get through......

 

For those with indigestion or acid reflux, do speak to your nurse. I was advised to have lansoprazole rather than Gaviscon because it better protects the stomach and oesophageal lining. That acid is really not good for us with fragile mucosas. It certainly did the job. On cycle 1 it was a problem for me but on cycle 2 I took it on a couple of days when the feeling started and I avoided indigestion and gastric reflux altogether. Amazing how we learn to manage our SEs........

 

Good luck everyone who also has a chemo appointment next week.

 

Sue xxx 

Gracie
Member

Re: October 2016 starters

Good morning, everyone. And what an absolutely gorgeous morning it is, with the sun shining so brightly.

 

That's really worrying, isn't it, Angie? The not knowing what caused it. Is a seroma an infection? I had one, but it went pretty, so I didn't bother digging into what it really is. I think the lesson for us all is to watch the temperature and not mess about if it's getting too high.

 

Sue, although I am feeling much, much better, the thought of alcohol at the moment turns my stomach, so I couldn't have a glass of wine even if I wanted one. But the bigger picture for me means that I probably will have to keep it to an absolute minimum in the future, if not give it up altogether.

 

If I can just bore you all for a moment with a quick summary of what happened to me, you will probably understand why I am thinking this way. And, possibly, I can help some of you avoid doing what I did.

 

When I was diagnosed with ER/PR positive breast cancer last September, I had just achieved a huge leap forward in my career. I have been putting myself under substantial pressure for many, many years trying to juggle work and family commitments (I had my children in my late 30s/early40s and also had to deal with illness and death of elderly relatives). I was overweight and drank more wine than I should have been drinking. I wasn't drinking every night, I wasn't drinking myself under the table and I could take it or leave it, so I thought that was okay. But, I suspect like a lot of middle aged professional women, I was using it as a stress reliever and I was overdoing it. So stress, obesity and alcohol - a lethal cocktail.

 

I sailed through my lumpectomy and radiotherapy, I was focused mainly on what was happening in my career and, in fact, surgery was scheduled to fit around the training I had to do. I learned nothing at all from the experience. I went straight back into the bear pit with barely a backward glance. The diagnosis of TNBC at my first annual checkup was a knockout blow to the jaw. I feel that my body is shouting "Look, I am telling you to slow down and take better care of yourself and this is what happens if you don't bloody well listen!!!".

 

I have given up work entirely during treatment. I thought I would miss it, but I don't. Oddly, in spite of everything - the chemo, nausea, everything - a sense of calm has descended upon me. I seem to be acutely aware of how fortunate I am, particularly in relation to family and friends, and I feel more "grounded", more in tune with the universe. I appreciate this sounds absolutely bonkers, but it seems as if my perception of my place in the world has shifted. In due course, I would really like a discussion about how cancer changes us and how we move forward, but this thread is probably not the best place for it.

 

Anyway, back to your question about alcohol. Everything you read about breast cancer states that alcohol should be kept to a minimum and that each extra drink over a certain limit (and I can't recall what that is) increases your risk. I have read and am reading everything I can get my hands on and I have yet to read an explanation as to WHY this is. I really think a full explanation would cause a mind shift in the population at large.

 

Some "experts", such as Chris Woollams in "The Rainbow Diet" suggest that a daily glass of red wine with a meal is a positive step, but my understanding is that is for people who are not going through treatment. I have lent the book to a friend, so can't check that. I have also read that for someone with a TNBC diagnosis, even small amounts of alcohol (three glasses of wine a week) has been associated with poorer outcomes.

 

In any event, applying basic principles of what alcohol does to the body and the pressure it places on the liver and kidneys and recognising that those organs are put under immense pressure as a result of the chemo, I suggest we should do what we can to help, rather than hinder our body to heal.

 

I'm not trying to tell people what they should do. I can see that the odd glass of wine now and again may be beneficial. Personally, I can't risk it. I had a wonderful time at the party last night without it and, in spite of the chemo, I have been sleeping heavily since I gave it up.

 

Gracie xx

 

 

suebond88
Member

Re: October 2016 starters

Good Morning everyone,

thank you for your support on my 'down day'.  It's so true, that the only people who really know how we're feeling and what to say are those of us in the same boat.  Feeling better today, but trying not to say 'I'd be there now'!!

hope you enjoyed the bonfire party Gracie, and that you enjoyed your night out with your daughter Sue?  Angie - you've really been in the war zone - hope you're feeling better soon.  Gracie, you said you wouldn't be having a drink...is that out of choice or have been told not to?  I actually managed a glass of red wine last night for the first time since Chemo 1, and it didn't give me heart burn.  Enjoyed it too 👍🍷.

enjoy your Sunday.

SueBxxx

Angywd
Member

Re: October 2016 starters

Hi Gracie, no it was all a bit of blur cos I was feeling so poorly.  I only found out on day 2 in hospital cos they left me in a wheelchair with my notes so I had a nosey!  Then I had a letter from the hosp y'day telling me it was sepsis but they had not found the cause of it.  I had a large seroma on my breast which had become very painful so they drained that while I was in as well.

 Have fun at the bonfire and wrap up warm!

Angie

xxx

Sus12
Member

Re: October 2016 starters

My hair has been gradually shedding onto my hairbrush the last few days. Out with my daughter tonight as we're visiting for the weekend. Last full head of hair moment I think so made the most of it and glammed up a bit :D.
Hey ho! Hope my wig will be ready this week!
So lovely your daughter is coming over Sue B. Just plan your trip for when all this is over. It's good to have something to look forward to and a trip over to Australia will be just the tonic you need then :).
Hugs to all
Sue xx

Gracie
Member

Re: October 2016 starters

Hi Angie,

 

That sounds rough. Thankfully, you are feeling better now. Did they tell you what might have caused it?

 

How miserable for you, Sue. But it's good your daughter is coming over soon. I keep placing next summer in my mind. That's when I'm going to be 100% back to normal again and the good things will all come back.

 

I'm going to a bonfire party tonight. I thought I'd have to give it a miss, but as i feel ok today, I'm taking my chances wherever they arise. No alcohol though. Those days are definitely over.

 

Gracie x

Skye
Member

Re: October 2016 starters

Hi Angwyd

 

Glad to hear that you're feeling better now.  As the hospital said, don't ever feel you're wasting time, it's better to be safe than sorry.  We all need to be extra careful and put ourselves first for this period of our lives.  

 

I'm scheduled for my 2nd cycle on 21/11/16, so hoping to manage without a line, but I'm not one to suffer in silence, so if it's not working I'll be getting a line in too.

 

PS. You wig/hair looked amazing - I'm getting mine shaved/fitted on Tuesday (might change that though!).

 

Take care of yourself.

 

Big hugs.

 

 

Skye xxx

Skye
Member

Re: October 2016 starters

Hi Suebond88

 

Sorry to hear that you're feeling down - think we all do at one time or another.  It's good that your daughter and family are still able to see you though.  You'll have a great time when they arrive! 🙂

 

Glad to hear, like me, you are not experiencing SE's from injections yet.  I've been told it may creep up and get us about 1 week later, so just watch out.

 

Have a lovey weekend.

 

Big hugs.

 

 

Skye xxx

Skye
Member

Re: October 2016 starters

Hi Maryminder

 

Hope all goes well on Monday - good idea to ask questions too.  The 2nd cycle will be a bit more relaxed for you now you know what to expect.

 

I've kept a diary too, but not of Temperature, more just how I'm feeling and any SE's I'm experiencing.  

 

Let us know how you get on pet.

 

Big hugs, enjoy your weekend.

 

 

Skye xxx

Skye
Member

Re: October 2016 starters

Hi Madmac22

 

Thanks for the heads up - this is what I love about this group, the invaluable advice.  I will watch out for anything nasty creeping up on me!!!! lol

 

I've got some anti-inflammatories there that I can take which should sort things out.

 

Congrats on the last dose of Chemo - so jealous!!!! 

 

Have a lovely weekend.

 

Big hugs

 

Skye xx

 

Angywd
Member

Re: October 2016 starters

Hi ladies!

Sue I'm so glad your family are coming to you, it will be just the boost that you need...not quite the Aussie sunshine you were hoping for but lots of love and hugs all round.  You're allowed to have tears, this  ba*#$rd cancer has taken control of all of lives for the next few months and it feels so unfair 😨

Just one thing, I had severe head and back pain Sunday before last through to Monday, decided I would hang on as I had appt with the oncologist for my ct scan results on the Monday afternoon.  I was shaking all over, temp 39.2 and could hardly open my eyes for head pain and it was a pulsating type of pain.  She admitted me immediately and it was sepsis...... Was in for 4 days lucky we caught it early.  So please don't delay calling the emergency chemo number like it did!!  Finally got my results and it's only in my chest wall, not anywhere else so chemo should clear that up.  Then mastectomy and radiotherapy after that.  

Had picc line fitted y'day for 2nd FEC.  The nurse was pleased with how much hair I had left Aand said I may not lose eyelashes and eyebrows which has given me some hope.  I did cold cap again, excruciating is the only word ❄️️☃

hope everyone is having a good weekend 

Lots of love

Angie

xxx

suebond88
Member

Re: October 2016 starters

Good afternoon everyone,

Bit of a down day for me today - should have been flying to Sydney to see my daughter and family, but obviously, had to cancel, as not allowed to travel.  I know it's for the best, and I know they are coming here in a few weeks time  😍 but still can't help getting teary 😔

Re the injections - I'm getting one shot, administered by the nurse the day after my Chemo, and so far (touch wood) haven't had the se's experienced by some of you ladies.  Hope everyone has an enjoyable weekend without too much agro from the se's.

SueBxx

Gracie
Member

Re: October 2016 starters

Good morning, ladies.

 

Well, I ended up in A&E yesterday, as the chest pains persisted, although not to the same severity, and my heart rate was much faster than normal. I have to say that everyone who dealt with me was absolutely brilliant. I was immediately moved away from everyone else, I was fast tracked and I think I must have had every relevant test and scan known to man, before being given a clean bill of health. I felt that I had wasted everyone's time, but I was told not to think that and that my symptoms were presenting as being something rather nasty (blood clot).

 

Anyway, after all that fuss yesterday, I woke up today (Day 11) feeling almost normal - yeah!! No nausea. A bit of lingering yuckiness, but I feel I can go about my normal business today. Shame my next dose is on Wednesday.

 

Hope everyone is well. Onwards and upwards.

 

Gracie xx

 

 

 

Sue C
Community Champion

Re: October 2016 starters

Hi Sue

I had exactly the same problem with my back due to the injections. I think the chemo attacks all our weak points as I had previous back problems. It does seem to clear up quickly with ibuprofen and also I found it wasn't as bad as the cycles progressed. ( I've now finished chemo and was on TC for 4cycles every 3 weeks.) 

Hope all goes well for you x

blueash
Community Champion

Re: October 2016 starters

With the injections, there is one that lasts for over a week. It is very expensive but some places let you have it. Most of us get the type that has to be injected every day because it is cheaper. They all do the same thing which is to prop up your immune system.

fairycake2
Member

Re: October 2016 starters

Yes Gracie, pulsating would also be a good word to describe it, but mine was not as bad as the pain you describe- that sounds terrible. I just had the one injection 24 hours after the chemo so i don't know whether it could be related as these pains occurred nearly a week later. Thanks for the tip about clarityn, I'll stock up for next time. When i talked to the chemo nurse on the phone she said she'd never heard of a pain like that and she's been doing the job for 15 years! It made me realise how incredibly helpful this forum is. 

Sus12
Member

Re: October 2016 starters

Hi I had the same. Terrible terrible sudden low back pain for hours one night that felt like my back was in spasm. I thought at first I was back to an original spinal nerve problem that I had for years until I had a root nerve block. I phoned the unit and was told that it could be the g-csf injections (I had to self inject for 7 days after my first chemo) and to take Naproxen which luckily I had some of from before and that sorted it out immediately as it's good for nerve pain. It was such a relief. Now at least I know what to take if it happens again when I have my next lot of injections. Hope everyone has a good weekend. We're having a mini weekend honeymoon as couldn't have a proper one due to the chemo starting but planning to go away for longer at the end of my treatment. Good to have something to look forward to in all this!
Hugs to everyone,
Sue x
Madmac22
Member

Re: October 2016 starters

Hi Skye, 

 

Just popping over from September starters. 

Im on the single injection to stimulate bone marrow, courtesy of the NHS, and I dont have any side effects from this until I hit day 6. And then I find that I suffer from terrible bone pain from Day 6 until Day 8. I was told this was a normal timeline for the side effects of this particular drug/dose.

 

ive been taking Clarityn but this didn't really help. Advised last time to take co-codamol which didn't touch the pain and this time I've been prescribed something stronger. My BCN has said that it's not unusual for people to need morphine to cope with this pain.

 

Fortunately I've just had my final dose of chemo so only have to get through one more round of side effects.

 

i really hope that you are spared this side effect but just wanted to give you a heads up that it may catch up with you yet and if it does don't suffer in silence.

 

Good luck.

 

Anne

 

 

 

 

maryminder
Member

Re: October 2016 starters

Hi All

Second EC infusion on Monday at 9.30, have been writing questions down to ask the nurse because like some of you I too have chemo brain, have also been keeping a daily diary of how I have been feeling, temps, whats helped what hasn't etc will take it to clinic to help me remember. 

 

I had 10 injections to give myself after the first one so assume it will be the same with this one, oh joy, Thyroid scan was done yesterday so I expect my Oncologist will contact me if there's a problem.

 

Thought my hair was going to last a little bit longer only wash it very carefully twice a week  but over the last couple of days it's gone into overdrive,every time I move I'm leaving a cloud of hair in my wake, will try and keep it until monday and then will get hubby to shave it off.

Hugs and Best Wishes

Mary xx

 

 

Skye
Member

Re: October 2016 starters

Hi Gracie and Blueash

 

Thanks for this tip. I've had one injection, given the day after Chemo. Am not experiencing any SE's from that I don't think.  Think it's the NHS that do it in stages, I'm lucky enough to be covered under hubby's private medical insurance, so for that I'm grateful if it means I can skip the SE's. 

 

Have a long very weekend ladies. 

 

Skye xxx 💕💕💕

 

 

 

 

Gracie
Member

Re: October 2016 starters

Oh sorry Skye, see you are having SEs from the chemo. Hope you feel better soon. Just do what you can. G x
Gracie
Member

Re: October 2016 starters

Thanks for the tip, Blueash. I recall seeing it mentioned somewhere else now, but for some reason was linking it to Taxol. I'll certainly get some for next time.

 

Skye - yes, those are the ones. But some people - and it sounds like you are one of them - only get one injection, and others have the kit to take home with them and inject themselves over a period of days. Some people don't get any at all. I believe they are very expensive, so possibly they give them out just to those who are likely to need it (I'm on a fortnightly regime). Or possibly it depends on the NHS Trust.

 

Not everyone gets the side effects, so it sounds as if you have been lucky. May it continue :).

 

Gracie x

blueash
Community Champion

Re: October 2016 starters

Anyone getting the g-csf injections should also be taking claritin hayfever tablets. I forget which threads I have put this on but in case you missed it:

http://myangrycancer.blogspot.co.uk/2013/02/claritin-is-worth-its-weight-in-gold.html

 

I have put this info on a few threads now but I would rather repeat it than have people not know about it.

Skye
Member

Re: October 2016 starters

HI Gracie and Swampy1901

 

Are the injections you are talking about the ones that increase your Bone Marrow that you have the day after your Chemo?  I've only had one, but I'm now on Day 4 and feeling absolutely pants!!  I've not got any SE from the injection, just from the Chemo.

 

I have absolutely no energy whatsovever, so shall potter about the house doing as little as possible.

 

Big hugs ladies - we all need them! xx

 

 

Skye xx

livvy
Member

Re: October 2016 starters

Hi everyone,
Thanks for the info on the injections I had similar pain last time in my back and pelvis area towards the end of my injections but just took painkillers and it did help,due to start my injections today again so we will see how it goes this time,good luck everyone! XX
Gracie
Member

Re: October 2016 starters

Just spoken to a nurse at the infusion suite. Yes, this is very likely to be a SE of the injections and may be a positive sign that the bone marrow is doing it's job. It is possible that I won't need so many injections next time. Obviously the blood tests will tell their own story, but this fits in with the fact that my immunity system must be fairly robust as I am rarely ill (ironic, I know).

 

For everyone's information should you go through something similar, she did say that if the chest pains flared up again, I need to go to A&E, just to check it out as, without proper checks, they cannot be sure that it is SEs from the injections.

 

Gracie x

Gracie
Member

Re: October 2016 starters

Thank you, Swampy. That being the case, it really should be stated quite clearly as a SE, so that those of us who experience it aren't scared witless when it happens - especially in the middle of the night.

 

Gracie x

swampy1901
Member

Re: October 2016 starters

Hi Gracie

 

The pulsing/throbbing pain sounds just like what I had on the last couple of injections - a bit frightening at the time especially in the chest area.When I mentioned it to the District nurses they said it was a side of the injections and to take normal painkillers but be careful when doing things because if you forget you have taken painkillers and try and do more than you can and therefore could aggravate things if you already have previous issues.

 

swampy

Gracie
Member

Re: October 2016 starters

Fairycake, I see you used the word "throbbing" to describe the bone pain. Would the word "pulsating" also be descriptive of what you experienced?

 

I thought I had pretty much escaped the bone pain issue which I know can come with the C-CSF injections. I had some lower back pain yesterday, but no more than what I have after spending the day gardening. However, shortly after my 7th and final injection at 8pm last night, I had very severe pulsating pain in my lower back/pelvis area. I have never experienced this type of pain before. I decided to have a hot bath but, as I lowered myself into it, I was hit by spasaming pain pulsating from my lower back up the front upper chest and neck area. It felt like I might be having a heart attack. I'm not prone to exaggeration or drama, by the way.

 

I jumped out pretty quickly, but the pain was very short lived, so I calmed down a little. At around 1am this morning I was woken up by the same severe pulsating pain. Again, it was short lived, but extremely frightening whilst it was happening. 

 

I was too frightened to go back to sleep for a while so spent some time googling C-CSF injections and this type of throbbing has been reported by others. I am quite cross that the official side effects notes do not mention this, nor is there anything on this website or others, such as MacMillan about it. 

 

I'm going to ring the Infusion Suite this morning just to check that there is nothing to worry about. I believe it will tail off now that the injections have ceased.

 

I still feel nauseous. I don't have chemo brain - yet. It's all a bundle of fun, isn't it?

 

Good luck for today, Angie. Fingers crossed for less SEs this time.

 

Gracie x

suebond88
Member

Re: October 2016 starters

Morning everyone,

hope it goes well for you today Angie. Have my second on Tuesday.   I've definitely got Chemo brain, spent 10 minutes looking for my car key in the drawer yesterday - couldn't find/see them despite moving everything around, even rang my husband to see if he'd moved them!  And where were they? In the drawer - just couldn't see them!!😨🤕

i have short grey/blonde hair and although it's not shedding yet, (am cold capping), it has become very coarse and einsteinish!!  I am using a little bit of Liz Earle hair oil on it in an attempt to soften it a little, the shampoo and conditioner are great too - not cheap, but I'm willing to pay if it helps. I'm also 'drawing in' my eyebrows in anticipation of them falling out 😳

Hug sto everyone

SueBxx

swampy1901
Member

Re: October 2016 starters

Hi Angywd and fairycake

 

Are you both having the injections to boost your whatevers- Chemo brain today sorry!! Bone pain is a side effect of this - I took regular painkillers but someone sugggested to me to take clarityn. I've got some in ready if I should need it on this cycle.

Hugs

 

Brain fogged swampy!!

 

 

fairycake2
Member

Re: October 2016 starters

Good luck today Angwyd. You're probably already doing this, but just in case you're not, I found taking a couple of paracetamol before hospital helped with the cold cap.