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June 2016 starters?

Belle
Member

Re: June 2016 starters?

Hi Popkit,

Lovely to hear from you. I think we've all been suffering in the doldrums lately. I've found it really helps to acknowledge that the depression is chemical. It's as much a side effect of the drugs as the foul mouth, the shakes, the sweats, the nausea and all the other delights we encounter. As a result, it will pass. Psychologically, I've definitely found the time between 3 & 4 the hardest so far. Something about the magical half way point I think. I thought I'd feel elated at getting halfway through but instead I just felt awful at knowing there was as much to come again. For me it's more of the same as I'm staying on FEC so I know exactly what's coming. But I can understand how changing treatment holds horrors of its own.

Glad you're feeling better about your hair or lack of it.

Much love,
B x
Belle
Member

Re: June 2016 starters?

Well today has been a truly awful day.  Day two of FEC 4 and if that weren't bad enough, I've slipped a disc again.  So now I have a heat pad around my aching veins, a hot water bottle in my back and another behind my aching knees.  All the while the chemical sweats pours off me and I shake and shudder my way through yet another day of crappiness.  On the upside I get to add diazepam to my mix so I'm somewhat floaty too.  That's a pretty poor upside.  

 

But in the midst of this misery, I received the most amazing news.  My nearly daughter-in-law has just signed up to do the Macmillian brave the shave in my honour!  I'm so proud I could burst.  She's 20 and has long blond hair (at least it's naturally blond but it changes colour a lot so I'm not actually sure of its current colour!) so to go from that to nothing is amazing!  So now, instead of wallowing in my misery, I'm going to bed with a smile on my face and warm glow in my heart.  Aren't people kind?

 

Just had to share.

B x

RosieFlower
Member

Re: June 2016 starters?

Hi Popkit50.

You are 4 days ahead of me, and I too found myself feeling utterly dreadful and low this time, not had so severely before. And the sores on my tongue were the worse ever again with this cycle. Have turned a corner now, but my mood really was on the floor!

 

Am starting T on the 19th and so not looking forward to a new round of s/effects! I too have Claritin at the ready.

 

Hope all is settling down for you now, and good luck on Tuesday, will be thinking of you.

Rosie

x

Sue H-S
Community Champion

Re: June 2016 starters?

Hi popkit50,

so sorry to hear that you are struggling so much. Unfortunately what you are experiencing with regards to week 2 and fatigue, depression tends to be quite common. Fatigue will build and is cumulative, as our cells never really get the chance to recover to their pre chemo levels, until all is done and dusted. This, of course makes fatigue and the ability to fight of infections far more challenging.

Depression is not helpful - but so understandable - one feels so alone - and all becomes such a struggle -we are so out of control, as what our body may throw at us next, that we have to deal with.

So having distractions, especially feel low - is such a bonus and uplifting. So perhaps organise some kind of treat for the time you might feel low.

You will get through this - we are here do support you as well as we can. I am glad you got the right treatment, even if the circumstances were challenging, when you were unwell.

But I am surprised to read, that your oncologist cannot make time for you. Is there anyone in your treatment team who can advise? My oncologist is seeing me every two chemo treatments to re-prescibe my treatment - ensuring all is well and I get the right accompanying medications.

Well done for getting your head shaved - I found it quite liberating! It is challenging, as we so often indentify our look and being by our hair. Amazingly often our best facial features seem to shine out, once the hair is gone - may it be our eyes, mouth, cheek bones or smile.

When you feel low - why not explore the Coffe Lounge Thread - https://forum.breastcancercare.org.uk/t5/Coffee-Lounge/ct-p/coffeelounge

Hugs

Sue xxx

 

 

popkit50
Member

Re: June 2016 starters?

Hi all,

 

Not posted for a while but have been reading all your posts - they keep me going. 

 

I am now 18 days post third FEC and have found this the hardest one so far. Side effects the first week are not so bad (no nausea thanks to great anti-sickness meds, dizzyness, achey bones, sore eyes and fatigue), it's the depression in the second week which I'm finding really hard to deal with never having suffered with it before. I just feel so bleak and can't seem to find anything to feel positive about. 

 

My third week is usually pretty good, but this week has been just awful. I had another emergency admission to hospital on Monday with a sore throat, raised temperature and scarily high blood pressure (238/125). I was kept in for a couple of days in a mixed acute medical ward and had no sleep for 36 hours (which made me feel even worse). Thankfully my blood pressure went down with medication and I was given antibiotics and sent home. The sore throat has developed into a horrid lurgy that's going around my area and now I have a hacking cough. Had bloods taken this morning to see if they can find out what's causing the high BP but came back okay.

 

I've also developed an allergy to the dressing they use to cover my PICC line. My skin came up in horrid fluid filled blisters - yuck. Dressing was changed this morning so I hope this one is kinder to my skin.

 

I am due to start the first of three T next Tuesday and praying that I will be well enough for it, as although I don't want to have it I also don't want to delay any treatments. I have the last treatment date 27th Sept. etched firmly in my head as the end of chemo.

 

I must be unusual in that I like miso soup - the one I usually buy is available from big supermarkets and is made by Itsu. I've got some in ready for next week. 

 

Saw GP this afternoon, results back from this morning's blood text show nothing out of the ordinary. He prescribed some Loratadine (Claritin) for me to take next week, will check with chemo nurses first though as they will be giving me anti-histimine with the T (Docetaxel).

 

Tried to change an appointment with the oncologist that I have booked in for September between my 5th and 6th chemo to be told that there is nothing available until November! Was a bit shocked by that. I know they are busy but that is crazy.

 

I was feeling a lot better today so a lovely friend took me to a cafe in a beautiful scented garden just outside of town and I had a cheeky cream tea for lunch which has really cheered me up. Wishing you all a lovely weekend and hopefully a side effect free one.

 

xxx

 

ps. Feel so much happier now I've had my head shaved - Glad I made the decision to ditch the cold cap after all. 

 

 

 

 

bagpus
Member

Re: June 2016 starters?

Marije - I'm glad the mucodis is working, I'll have to tell my onc as he was keen for feedback to find out if it is worth recommending. I'm also glad you're pressing on with the chemo, I'm sure you'll be glad at your decision in the long term, however difficult it makes things in the short term.

 

Belle - miso soup is revolting! However, I'm prepared to give it a go as it took them 4 attempts to put the cannula in last time. I'll let you know how I get on.

 

Hazel - I'm sorry you're having such a hard time getting the help you need. I have to admit that I've found the nurses on my helpline a little abrupt at times. I guess they all get so used to dealing with patients they forget that they're talking to an individual who's completely new to this whole cancer malarkey. No excuse though. I'm glad you've eventually found some help.

 

xxx

Marije
Member

Re: June 2016 starters?

Thank you. I ordered one from Amazon!
I fasted for my first round of FEC, but was pretty sick afterwards. I didnt fast for the last 2 rounds, and it actually felt a bit better. I was/am a great believer in fasting however, and the research showed great benefit while on chemo. I have just not been disciplined enough to try it properly..
Marije
Member

Re: June 2016 starters?

Another one you all might be interested in: Sail4Cancer

A friend of mine with breast cancer got a family holiday from them a couple of years ago... Worth a shot!? 

X

DebHummingbird
Member

Re: June 2016 starters?

Hi is your T shot for taxetare? Xdeb
blueash
Community Champion

Re: June 2016 starters?

Marije, I did a Google search and ordered it from here:

http://www.lifemel.co.uk/

you can also find it on Amazon - just make sure you get the orinial because they also do one for relaxation and menopause symtoms.

 

Did you ever do the fasting you mentioned?

Belle
Member

Re: June 2016 starters?

What a fabulous resource, Marije!  For anyone else aged between 16 and 40 and interested in The Willow Foundation this is their website: https://www.willowfoundation.org.uk  I've not heard of them before so thank you very much for posting this.  Do let us know about your special day, what you decide to do and how it all goes πŸ™‚

 

Rosie & Hazel - I picked the miso soup up from a large supermarket - small ones won't have it and nor will budget ones.  It's in paste form and the brand I had had 4 sachets in one box.  This is one of the forums I found the tip on: http://www.hystersisters.com/vb2/showthread.php?t=357436 It's the second post down.  I didn't do the double strength but if next time is a struggle I'll certainly consider it for the my final one.

 

Feeling a rubbish but just the usual so far.  Apart from achy legs?  What's THAT about??  It's new and very unwelcome.  And I'm still on FEC!  Perhaps my body is coming out in sympathy with those of you switching to Tax and decided to throw a new side effect at me?  Joking apart, I hope those of you getting your first tax coast through it.  Glad to hear so far so good Marije.

 

Much love,

B x

haz25a
Member

Re: June 2016 starters?

Hi Belle,

Meant to post this on July Starters thread, I'm not a June starter, naughty me! Lol. I do read the June and August starters threads too.

I have aired my views re the Helpline with the Senior Oncology nurse who I see at the Outpatients clinic. She agreed it wasn't ideal and was often a case of "who answered the phone" in terms of how helpful they were. I will consider putting in an official complaint.

I might give the Miso soup a try if I can stomach it, it sounds like it really does work. That's great news. Where did you get if from?

Hope you don't feel too rubbish after number 4.

Hazel. x
Marije
Member

Re: June 2016 starters?

Same here: I thought being halfway would be a joyous thing, but it has been my biggest wobble yet...

Really scared of what T might bring me... (Ah, did I tell you I decided to give it a go?). 

To be honest; I've been feeling much better this time round re side effects. I have been using Mucodis mouthwash (after the tip on here), and so far I have managed to keep the mouth ulcers at bay! 

Feeling very tired though, but littlest is not sleeping well, so the 'normal parent sleep deprivation' is not helping... 

On a positive note: the Willow Foundation has been in touch with me, saying they want to grant me a day out! We spoke on the phone, and we're thinking of doing a night away without kids in a spa hotel somewhere... They also said I could do 2 nights in London to see a West End show, everything, travel and taxi's etc paid for, but we feel it's too far to travel and too long for the kids.... (Though it's tempting!).

It truly is amazing all the 'goodies' you get when you have cancer... Social Services are also paying for 3 half days at the private nursery here, just to give me a break... Pretty amazing.

 

x

RosieFlower
Member

Re: June 2016 starters?

Hi Belle

 

I too thought i would experience some elation at being halfway - but sadly not! Finished FEC 2 weeks ago tomorrow and no joy at all in being halfway - now onto T next week!

 

Interesting regarding the soup - can you buy it somewhere?

thanks

Rosie

x

Belle
Member

Re: June 2016 starters?

Hi Hazel,

So sorry to hear your unit are being so unhelpful. Is it worth contacting your hospital's PALS team? They might be able to sort out the discrepancy around referrals to GP etc.

I found the spell between 3&4 a real downer too. I thought I'd feel elated at being halfway through whereas I just felt miserable at the thought of as many to come. However, just done number 4 so two thirds done now.

Back on the veins front (not that I'm obsessed or anything ...!) I have news! I read somewhere on an American forum that a hospital in the States recommended drinking Miso soup the night before and the morning of chemo. The theory is that is helps to retain the fluid and thus plumps up your veins making for easier cannulation. So I thought I'd give it a whirl. It tastes foul (imo) but my normally spindly, pathetic and prone to vanishing veins were standing proud and declared beautiful. I did nothing else different so I can only think the miso soup did this. I shall do it again. Even if I have to hold my nose while drinking!

B x
Marije
Member

Re: June 2016 starters?

Thanks for the honey tip Blueash, I'm always interested in hearing natural healing foods!

Where did you order it? X

haz25a
Member

Re: June 2016 starters?

Good morning Ladies,

 

Hope you are all doing well. It's been pretty quiet on here of late. I've not posted for a while either mind you.

 

Day 14 after second cycle of TC & Herceptin. The second cycle floored me a bit to be honest, was so exhausted and fatigued for the first whole week. Also had to get some cyclizine to add to my ondanestron and metaclopramide, no vomiting thankfully but pretty nauseous. Heartburn was quite bad too but already on esomeprazole and ws advised to take an extra dose in the evening when required. Gaviscon also helped.

 

Started to feel slightly better days 7 & 8 then had a complete meltdown mentally on day 9, tearful, feeling really low and announcing I wasn't having any more chemo. Also, my helpline is pretty crap to be honest, they only ever seem to refer to GP, out of hours etc. desite having their own assessment unit which is 10 mins away from me. My GP and helpline don't really seem to agree on the way things work either which leaves me a bit stuck in the middle. To be fair, my GP's practice is very busy and my GP made a good point of not really knowing which anti sickness tablet to prescribe for me, she ended up phoning oncology helpline for advice. E.g. I'm also having herceptin and apparently my hospital don't use Domperidone as it can sometimes add to heart problems when you're having chemo and herceptin.

 

Day 10 was a really good day, got over my metldown and went to my local Maggie's Centre for the Talking Heads session to learn about headscarf tying and scalp hair etc. It was really useful, there were five of us including myself and it was nice to meet other people in a similar position. A TIP - the hairdressser who has been working with cancer patients for 9 years suggested brushing your scalp with a soft baby brush daily throughout treatment. She also explained that when the hair starts to grow back it will be soft and downy at first, quite possibly curly with no pigment and then the "real" hair would start to grow back. She also suggested using coconut oil on the scalp.

 

Day 11. Had a routine GP appointment for my psychiatric meds in morning. I woke up feeling dizzy and then started to get "heart flutters". My GP, who is the senior partner and is very good, checked my BP and pulse which were stable but suggested I call the helpline in case I needed an ECG. Well! What a uproar that caused, the nippy nurse went ballistic on the phone as she couldn't just "pass me over to GP as I'd just seen him", long story short, she wanted to call an ambulance to take me to a really busy hospital the other side of the city when they have an ECG machine and are 10 mins away. I said No thanks but I would go to closer A&E. Had to drive past chemo unit to get there and decided at last minute to drop in. They were NOT happy at all but got several ECG's, was thoroughly checked over and observed, saw Registrar and a Consultant Oncologist (not mine). Was there for just over 5 hours but was in a bed in a gown etc. They had taken Bloods and my neutraphils are down to 0.2! ECG showed some ectopic heartbeats but they were not overally concerned but made a referral to cardiology. Had a sore throat yesterday but feel a bit better today.

 

Next chemo is due next Friday, Bloods next Wednesday so we will see if they have improved enough for then. Also spoke to Nurse who thinks my Onc may want to stop my chemo and just carry on with Herceptin??

 

Really feel unsupported by my chemo unit helpline. What is the point of it if all they do is refer to GP or out of hours? Don't think I'll bother phoning them again. It depends who you get at the end of the phone but some of the nurses are really rude and abrupt although some have also been lovely and helpful but it shouldn't be a lottery!

 

Oh, read the post about loratidine antihistimine. I had also read about this. I've been on 10mg of cetirizine antihistimine daily for many years now for hayfever, rhinitius and allergies to my cats! Haven't experienced any bone pain from Taxotere or Herceptin (yet) so maybe there is something in it. Re: safely taking it long term, like I said, I've been getting it on prescription daily for over 5 years now and a friend of mine is the same.

 

Wishing you all well and minimal side effects for future treatments. Hugs to the ladies who are feeling ill at the moment.

 

Hazel.x

haz25a
Member

Re: June 2016 starters?

Good morning Ladies,

 

Hope you are all doing well. It's been pretty quiet on here of late. I've not posted for a while either mind you.

 

Day 14 after second cycle of TC & Herceptin. The second cycle floored me a bit to be honest, was so exhausted and fatigued for the first whole week. Also had to get some cyclizine to add to my ondanestron and metaclopramide, no vomiting thankfully but pretty nauseous. Heartburn was quite bad too but already on esomeprazole and ws advised to take an extra dose in the evening when required. Gaviscon also helped.

 

Started to feel slightly better days 7 & 8 then had a complete meltdown mentally on day 9, tearful, feeling really low and announcing I wasn't having any more chemo. Also, my helpline is pretty crap to be honest, they only ever seem to refer to GP, out of hours etc. desite having their own assessment unit which is 10 mins away from me. My GP and helpline don't really seem to agree on the way things work either which leaves me a bit stuck in the middle. To be fair, my GP's practice is very busy and my GP made a good point of not really knowing which anti sickness tablet to prescribe for me, she ended up phoning oncology helpline for advice. E.g. I'm also having herceptin and apparently my hospital don't use Domperidone as it can sometimes add to heart problems when you're having chemo and herceptin.

 

Day 10 was a really good day, got over my metldown and went to my local Maggie's Centre for the Talking Heads session to learn about headscarf tying and scalp hair etc. It was really useful, there were five of us including myself and it was nice to meet other people in a similar position. A TIP - the hairdressser who has been working with cancer patients for 9 years suggested brushing your scalp with a soft baby brush daily throughout treatment. She also explained that when the hair starts to grow back it will be soft and downy at first, quite possibly curly with no pigment and then the "real" hair would start to grow back. She also suggested using coconut oil on the scalp.

 

Day 11. Had a routine GP appointment for my psychiatric meds in morning. I woke up feeling dizzy and then started to get "heart flutters". My GP, who is the senior partner and is very good, checked my BP and pulse which were stable but suggested I call the helpline in case I needed an ECG. Well! What a uproar that caused, the nippy nurse went ballistic on the phone as she couldn't just "pass me over to GP as I'd just seen him", long story short, she wanted to call an ambulance to take me to a really busy hospital the other side of the city when they have an ECG machine and are 10 mins away. I said No thanks but I would go to closer A&E. Had to drive past chemo unit to get there and decided at last minute to drop in. They were NOT happy at all but got several ECG's, was thoroughly checked over and observed, saw Registrar and a Consultant Oncologist (not mine). Was there for just over 5 hours but was in a bed in a gown etc. They had taken Bloods and my neutraphils are down to 0.2! Had a sore throat yesterday but feel a bit better today.

 

Next chemo is due next Friday, Bloods next Wednesday so we will see if they have improved enough for then. Also spoke to Nurse who thinks my Onc may want to stop my chemo and just carry on with Herceptin??

 

Really feel unsupported by my chemo unit helpline. What is the point of it if all they do is refer to GP or out of hours? Don't think I'll bother phoning them again. It depends who you get at the end of the phone but some of the nurses are really rude and abrupt although some have also been lovely and helpful but it shouldn't be a lottery!

 

Oh, read the post about loratidine antihistimine. I had also read about this. I've been on 10mg of cetirizine antihistimine daily for many years now for hayfever, rhinitius and allergies to my cats! Haven't experienced any bone pain from Taxotere or Herceptin (yet) so maybe there is something in it. Re: safely taking it long term, like I said, I've been getting it on prescription daily for over 5 years now and a friend of mine is the same.

 

Wishing you all well and minimal side effects for future treatments. Hugs to the ladies who are feeling ill at the moment.

 

Hazel.x

blueash
Community Champion

Re: June 2016 starters?

Hi girls,

 

For those of you worried about blood counts, I have ordered Life Mel honey. It comes from Israel and they feed the bees with medicinal herbs. See here:

http://www.lifemelusa.com/Lifemeltrial2006-US.pdf

 

I have not started my chemo yet,  due to having loading dose of Herceptin tomorrow then 6 lots of TC plus Herceptin.

 

Julia did you manage to fast before your chemo and would you recommed it?

bagpus
Member

Re: June 2016 starters?

Hi Rosie,

 

He didn't specify, but I got the impression that it was a case of take it as much as you need to. I'm presuming that the aches and pains go away after a week or so, like most other side effects, so that would make sense with the information you've found saying to take it for 7 days.

 

Though if they work and my aches last longer I think I'll keep on taking them - people with really bad hayfever must take them for weeks on end in the summer. Perhaps ask the pharmacist when you get them as they'll know about any issues with taking them for more than a week?

 

My dog takes an antihistamine every single day for his allergies and it doesn't do him any harm!!!! Not sure we should be using vetinerary examples though!! Smiley LOL

 

x

Flopsy
Member

Re: June 2016 starters?

Hi Bagpuss and all,

 

I've been on the Claritin since starting T and sometimes Benedryl.

 

Found an old medical report in a journal of anti-histamines helping with the pain of T. It was from the 70's

 

Really interesting. I've not had severe racking pain so far. Touch wood. A general ache from the shoulders to the hips down the spine and radiating. 

RosieFlower
Member

Re: June 2016 starters?

Hi Bagpuss.

Am about to start my first T next week and that is interesting about Claritin - did he say how often you have to take? Been googling, and from what i can see, its take for 7 days , and start the day after chemo. Is that what he suggested? I will also ask my BC nurse.

Thanks for the tip

Rosie

x

Sue H-S
Community Champion

Re: June 2016 starters?

Hi bagpus 

great tip - Claritin is an antihistamin drug, usually used for hayfever and such. The active ingredient is Loratadine 10 mg. If you are lactose intolerant Claritin does contain some of it as an an inacive ingredient.

There is a lower cost option available with the same active ingredients - just have a look at Tesco's own. They should have some and they will be cheaper than a the branded ones.

Hugs

Sue xxx

bagpus
Member

Re: June 2016 starters?

Hi all,

 

Just had a tip from my oncologist in the lead up to my first T session in a week or so. He's recommended stocking up on claritin as, apparently, this can be really helpful in managing the aches and pains which are often associated with T.

 

He told me that this is regularly prescribed in the USA to help with the SEs, but that the NHS don't prescribe it here (yet), so you have to buy it yourself. Interestingly, the medics have no idea why it's so helpful, it just seems to work!

 

Hope you're all well, or at least coping OK if you're in a down phase. xxx

Marije
Member

Re: June 2016 starters?

You're probably right, but personally I do feel better taking some supplements .... Whether it helps or not, it's maybe just a feeling of being somewhat in control... It won't hurt either I suppose. 

Yes, after the chemo I'll definitely have a 'building up plan'! πŸ™‚ 

Sue H-S
Community Champion

Re: June 2016 starters?

Hi Marije

Well - a triangle turned up as a picture!

It is interesting to see what your herbalist has recommended. Blood levels are based on science and unfortunately during chemo there is nothing we can do to improve our values, apart from science - i.e. Filrastim for white blood cell count and blood transfusion for severe anaemia. Chemo is there to destroy all fast growing cells, and unfortunately it will affect our blood cells. The chemo also affects our bone marrow, i.e. where new cells are 'born'. So it is a very challenging time and there does not seem much we can do to support our bone marrow. 

I have checked with my team and others, whether it would be worth taking an iron supplement or eat iron rich foods, to boost the oxygen carrying ability of my red blood cells to help fight fatique. Unfortunately it will not make much difference at this time, whilst on chemo.

Post chemo it is, of course a completely different story.

As with any supplements and foods it is important to check that they do not contain phytoestrogens - as when having an ER+ or PR+ cancer, it is highly recommended that these are 'off the menu', so to speak.

I am lucky, that I do not suffer too badly from a 'chemo mouth'. The penicillin I have been prescribed and take up to day 10 post chemo for my mucositis (which most of us suffer from), and is quite severe - seems to do the trick.

Excellent dental and oral hygiene in combination with a relevant mouthwash, preferrably non alcohol based, is probably the best way to deal with minor mucositis. 

For some reason pineapple and fruit based ice lollies also seem to help.

Sue x

Marije
Member

Re: June 2016 starters?

image.png

Marije
Member

Re: June 2016 starters?

Goodmorning,

sorry, a bit of a random one, but I just read this blog 'Cancer with a smile' and something about letting some coconut oil melt in your mouth to get rid of horrible chemo mouth.. Not tried it.. But maybe an idea?

 

My bloodlevels were low too, but nothing to be concerned about. Papaya leaf extract (or just normal papaya), fresh fruit and leafy vegetables are good for boosting blood. Also Molasses (horrible taste!), beets, cherries, chlorella, mushrooms etc (this is all advice from my local herbalist). 

Dont know if inserting pictures work for me.. 

image.jpeg

bagpus
Member

Re: June 2016 starters?

Hi Julia,

 

My understanding is that the filgrastim injections do increase the white blood cell production, so should help to increase the levels.

 

I've just finished my 3 FEC with which I had 5 injections, now moving onto T and I've been told that the injections are increasing to 7 and start the day after treatment (rather than 5 days post treatment with FEC). So hopefully they'll also increase your filgrastim for T and this might help. You could always ask them whether it's an option to increase your injections if not?

 

I've never been told the results from my blood tests and am now quite glad - I'm happy not to have something else to worry about unless it drops so low I have to delay treatment, ignorance is bliss!

 

x

Belle
Member

Re: June 2016 starters?

Hi Sue,

Julia is quite right, I'm afraid. Leukaemia is one of the very rare side effects of Epirubicin (http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/epirubicin) and it is one that we should have been warned about. It is important to stress that it is very rare. This site (updated in March 2016): https://www.medicines.org.uk/emc/medicine/21172 lists the figures for as somewhere between 1 in 1,000 and 1 in 10,000 for both Congestive Cardiac Failure and Leukaemia so it really is something to be aware of but to put at the back of your mind.

Hope that helps,
B x
Belle
Member

Re: June 2016 starters?

Hi Julia,

I think we'll all be experiencing a fairly major drop in blood count and as time goes on, it just doesn't recover. I'm a tad concerned too but again no one else seems to be at the moment. My understanding that the cut off for treatment is Neutrophils of 1.0 rather than white cell count but I may be wrong. I'll certainly be asking about it on Wednesday at my next consultation as my bloods are even closer than yours (my starting wcc is lower than your current one which should give you some comfort as it was very well within the normal range). My results are as follows in order of treatments: WCC 4.1, 4.2, 3.3
Neutrophils 2.32, 2.39, 1.58. My next lot will be taken on Wednesday so I'll know more then.

Incidentally, I'm not on filgrastim or G-CSF injections at all so nothing is boosting my recovery at present.

I'm staying on FEC for the whole of my treatment so have concerns for the long term effects in particularly of Epirubicin. My understanding is that any symptoms of heart problems will be taken seriously and screened promptly. Not sure about anything else. I'll do my best to find out though.

Hope that helps,
B x
Sue H-S
Community Champion

Re: June 2016 starters?

Hi Julia S

It is great to hear that you have your last EC behind you. I am on 6 x FEC - so the risks of low white and red blood counts is very real to me.

My red blood count now is below normal levels all of the time and getting lower, but thankfully high enough to continue with treatment. I also have the filgrastim and they do seem to be working well for me, with my white bloodcell count being sometimes even higher than it was, before I started chemo. Do you know what the dose of the injection is? My dose is 30 million units per injection - and I have 8 injections as of day 3 post treatment, 

Leukemia risk - This would be a blood cancer and I cannot find any evidence at all of this risk. May you have mixed this up with anemia?  A condition in which there is a deficiency of red cells or of haemoglobin in the blood, resulting in pallor and weariness, which is a risk, as is heart damage. It takes 120 days for a red blood cell to be 'born' and come to full maturity to function properly. So if you can, it may be an idea to request monthly blood tests once your treatment has completed - to see whether your red blood cell count is recovering as it should.

I presume they have, as they did with me, taken an ECG before you started your treatment. I shall ask for a further one 3 months after my treatment is completed to see whether anything has happened. I am chosing a three month gap, before asking, to give my body time to recover as well as possible.

Hugs

Sue xxx

Julia S
Member

Re: June 2016 starters?

Hi Ladies,

 

I had my 3rd & last EC on Thursday, moving on to T for next 3, and got some bad news (to me, the nurses seemed totally unfazed): my white blood cell count, measured as WCC, is dropping like crazy. It was 7.1 before first chemo, 6.3 before 2nd, and now 4.3. At this rate, they might well have to delay 5th or 6th chemo (I think 1.5 is the level below which they won't start chemo).

 

Has this happened to anyone else? I am on the filgrastim injections, but they only shorten the time of neutropenia, in my understanding, they don't actually get the levels up beyond what they were.

 

I'm also worrying about the long term effects of EC, now that I'm done with it: has anyone been told what the check-ups are for heart damage & leukemia risk?

 

Cheers (I think - actually I'm not feeling bad, just worried about stuff),

Julia

RosieFlower
Member

Re: June 2016 starters?

Hi Terrianes90

I had a double mastectomy and axilla clearance in April, and know what you mean about the feeling under the arm. I think as i had double mx it felt like a tight clamp across my chest and was referred for physio - which has been a godsend.

I see them now the week after chemo, and they massage and knead the armpit and scar area as chemo can set back healing, and make things tighter again for some. I feel like i have a huge fat pad runing from top of armpit to chest area, but with kneading (which i try and do in the week too) it loosens it up. Maybe see if you can be referred for physio just to losen area.

 

 

Hi Belle

Thanks for the cream info - i asked about it previously. Had 3rd FEC 8 days ago and don't think pain in veins is as bad. I saw somewhere on here about massaging almond oil , which i have been using, but thanks for the tip about small circular movements to break down cording - off i go to do this - always something to do!!

Hope all have a good weekend

Rosie

xx

 

bagpus
Member

Re: June 2016 starters?

Hi Terriannes90 and welcome!

 

I use 'mucodis' to help with my mouth and it does make it a little better, though I don't think there's anything which fixes the general revolting-ness of chemo-mouth! Unfortunately it's not available on the NHS and is Β£25 per bottle but I do find it helps. I know a couple of other people on this thread have used other mouth medication so I'm sure they'll make some suggestions.

 

If you scroll through the posts you'll find that cheese, jaffa cakes and tuc biscuits are all recommended! Smiley Wink

 

The other day I found a website of inappropriate things which have been said to people with cancer, which shocked and amused me in equal proportions. Your comment about going from size 8 to size 12 made me think of this choice comment which someone received "Gosh, I thought chemo was supposed to make you lose weight"!!! I'm currently working my way from size 12 to size 14 having only just lost my baby weight, so I do sympathise.

 

Can't help on the gorilla impersonation front as I'm not having surgery until after my chemo, but I'm sure someone will help.

 

x

Terriannes90
Member

Re: June 2016 starters?

Hi all. I'm new but after reading all your comments am glad I signed up! I thought I was the only one suffering but this has really helped. Couple of questions for you - I have just finished my last fec and start t & h in 10 days. Does anyone who had mastectomy & aux clearance feel like they have a balloon under their arm?? I walk round like a gorilla with my arm swinging!! It's bit swollen but doc checked & seems ok. Also bad bad bad taste!!!!!! Everything has no taste & the consistency of food in my mouth is horrendous. The only thing I can eat is tinned tomatoes & oranges. Tho maybe this ain't a bad thing as gone from size 8 to 12! Looking forward to any replies.
Belle
Member

Re: June 2016 starters?

Well done Sue!  I'm finding it too chilly for bald at the moment - yes I know I'm a wuss!

 

Ages ago when we were talking about veins, someone asked me about the cream my complementary therapy service mixed for me - sorry, I can't remember who?  Got the recipe today - I have no idea if it works but as massage is recommended for chemo veins I'm happy to try. It's approximately 120g aqueous cream with 12 drops of black pepper and 12 drops of juniper essential oils mixed in.  This is to be massaged onto the affected arm a minimum of three times a day although more frequently is fine.  Using upward strokes is good for rubbing the cream in and then small circular movements with the thumb over the affected veins to help break down any cording.

 

Hope that makes sense!

 

B x

Sue H-S
Community Champion

Re: June 2016 starters?

Hi Belle,

 - just popped across from the May thread (again)

I 'outed' my bald look, too - this week. Of course with a generous lashing of slap all over the face - filling in the missing eye brows and hiding my lack of eye lashes with a fantastic pencil eye liner from Urban decay, blusher not to look too pale.

And of course - very large dangly earrings!

No one batted an eye lid, looked after me with a pitying expression, turned away or anything else.

Very liberating!

I admire all who make their own smoothies - I have recently become addicted to the Innocent ones - the ango & passion fruit and the straberry & banana. One quite sweet the other quite tart - just however my mood (or craving) takes me.

Hugs

Sue xx

 

Marije
Member

Re: June 2016 starters?

So for fruit smoothies I usually do something like banana, papaya (good for boosting blood platelets apparently), mango or orange.... Anything I got in the house really! Kiwi, apple, strawberries, lemon.. Sometimes with some yoghurt or coconut water..  Sometimes I chuck in some flaxseed oil or wheatgrass powder, or Moringa powder, whatever I have really. 

For veggie juices I usually have carrots, beetroot, apple, ginger, sometimes spinach or kale... Or cucumber or tomato.. And some green powders again. 

There's no rules... Just chuck in what you can find! Though with veggie juices I do usually add apple as it makes it a bit milder to drink. Or if it's too strong just dilute it a bit. 

 

Avocado on toast is another healthy snack. 

 

X

bagpus
Member

Re: June 2016 starters?

My smoothie of choice is some frozen mixed fruit, frozen bluberries, half a banana, 0 fat plain yoghurt, orange juice and wheat bran. Basically went through a list of ingredients which would help my immune system and keep me 'regular' then chucked them all in a blender!

 

Would also love to hear everyone else's recipes so I can have a bit of variety.

Belle
Member

Re: June 2016 starters?

Hi Marije,

I am glad you're beginning to feel a bit better. As far as shaving goes, I don't know if you were following this thread back at the start of June when those of us who didn't cold cap started to lose our hair? Many of us did feel liberated after getting rid of it. I certainly felt like that I was wresting a bit of control back from the cancer - however illusory that may be. Do you have a wig? That might help you. I don't wear mine a great deal (very rarely actually) but do like it when I want to really blend in. When I'm feeling ballsy, I go bald, otherwise I wear scarves tied in vintage styles. On the whole I haven't found people taking any notice of me. The time I wore a bright blue wig to a supermarket I certainly didn't get a second glance which disappointed me!

I'd love to know about the smoothies you and everyone else is doing? Any favourites?

B x
Marije
Member

Re: June 2016 starters?

Thank you Julie,

that is good to hear. I am very pleased so far you're not feeling too bad on T... Please keep us updated!

 

Now that the 3rd FEC is over and done with, I can think a bit more rationally now... Still dont want to do it! But my conscience is trying to persuade me, haha. It's just a whole lot of acceptance, isnt it. The fact that there isnt always much choice in life, the fact that I will be bald... It's amazing... Part of me now wonders whether I'd feel a bit liberated when I do shave.. I've fought so hard to keep my hair, but at the moment it's looking pretty pathetic...and THAT is making me feel worse as well. Still.... The thought of being completely bald scares me.. Yesterday I was wearing a headcover (the Seasalt handyband, as reccommended here!), and all of a sudden I felt people looking at me... Never had it up until then, but now my hair is at a stage where it does need to be covered up.. Handybands are super comfy though, and you can 'tuck' the end in at the back. 

 

Also, great to read I am not the only one 'compensating' my chococlate treats with smoothies and juices, haha! And it was only after reading Jaffa cakes on here yesterday that I HAD to buy them in the shop... Bad ladies! 

 

Take care everyone.

xxx

julie.galea
Member

Re: June 2016 starters?

Hi Marije

Havent posted on here for a while but have just been reading your post about FEC-T and cold capping.

I have had my 3 FEC and did have a lot of side effects and cold capped for all 3 but unfortunately have lost quite a bit of hair and on the last one had to wear a protective paper cap over my hair but it was very uncomfortable so decided to stop. 

 

I had similar thoughts about stopping chemo, especially after my second FEC as I felt so ill, but with help from family and friends manage to get past it and had to keep telling myself that it is for the best and its my best chance.

 

Had my first T yesterday, didnt cold cap, and I am actually feeling great this morning, the nausea is so much less, in fact I have only taken one of my anti sickness tablets and I think that was only because I thought I should, not because I needed it.  I am tired but I think that this was mainly because I didnt sleep much for a few nights before the treatment as I had read up about so many side effects, but luckily so far so good.

 

I still have 2 T's to go and then 20 sessions of Radiotherapy and then will be on Tamoxifen as well but I feel a lot more positive today after my 4th treatment, can definitely see the light at the end of the tunnel.

 

You are half way now, you have done so well to get this far and just think that by the new year you will be feeling so much better, yes, maybe with shorter hair (that is what I am struggling with at the minute, the thought of going completely bald) but hopefully cancer free and with the rest of your life to look forward to with your family and friends. 

 

Take care.

Julie

 

PS.  Also an update on my veins,  my arm has been really sore after my FEC, not sure if its my imagination but this morning it doesnt feel as bad, still slightly tender but nothing like it has been over the last few weeks.  Touch wood that it stays like this,  T is meant to be easier on the veins to lets hope sp. xx

 

 

bagpus
Member

Re: June 2016 starters?

That's so funny - I'm having smoothies to try and balance out the junk food too! Smiley Very Happy

netti37
Member

Re: June 2016 starters?

My cravings are all over the place...crave carbs straight after treatment... Had cheese n mash, pasta and got faggots n mash and that's just today!!! After a few days my cravings turn to chocolate and sweets. I do try and sqeeze in my 5 a day, so have smoothies and eat melon and pineapple for my dry mouth. Its like being preggers again, especially when the nausea kicks in. Not putting too much weight on yet though, but may change when T starts plus the 12 steroids a day!! Hope everyone is doing well xxx
Charissecarson
Member

Re: June 2016 starters?

I'm with you on the cheese craving, can't get enough of the stuff! πŸ§€ EC number 4 today, just home, added emend now so hopefully I won't be sick tonight, fingers crossed. Hope everyone's well at the moment. Xx
Belle
Member

Re: June 2016 starters?

Jaffa cakes, not yet, but so far I've craved cheese scones, hummous and philadelphia cheese ...!  Not idea what that's all about!

 

B x

Sue H-S
Community Champion

Re: June 2016 starters?

Hi bagpus

only HALF! Smiley Very Happy

I manage a WHOLE one in a sitting, lol.

Yes, it is weird - we have the oddest cravings - but quite fun, too - so many excuses to indulge!

Hugs,

Sue xxx

bagpus
Member

Re: June 2016 starters?

Is anyone else suffering from a jaffa cake addiction? Chocolatey enough to satisfy the naughty-food craving and with an orange tang that just about cuts through the hideous chemo-mouth taste. Just polished off half a pack in one sitting. Smiley Embarassed

netti37
Member

Re: June 2016 starters?

Thanks Belle. That thread is where I got your tips from anyway πŸ˜‰ Thank you ...and to other ladies who share your experiences...i would not know half as much if it wasn't for this forum. Xx