Anyone starting Chemo in December 2018?

[DiKat]

Hi Angelblue 

ive just rung for my bloods. I’m going ahead, my neutrophils have risen to 1.45 from 0.2 in a week, so I calculate that as an increase of 0.18 per day, if it works like that. I understand your panic...I’m not liking the fact that I’m starting lower every time! I’m sure you will be fine though as with a .11 increase that would put you at 1.4. My Oncologist said he has on occasion put people through as long as above 1. Think he said he had to request special permission though.

I had to laugh when you had done the calculations Angelblue. Exactly the kind of thing I do....think we’re both over thinkers! They wouldn’t do anything to put us in danger, hopefully. I wonder if it’s going to be 7 or 10 Filgrastim for us this time?? Good luck for tomorrow xx

[angelblue]

ps - KC72 forgot to say but yes I've definately started with hot flushes. Worse in bed....another wonderful side effect!!

Jayne1966 Sorry you've been feeling rough - I hope you're picking up now. Re PICC line... I keep being told I have really good veins (I'll take any flattery I can get at the minute) so although I have some pain above my wrist I'm persevering with cannula for now and will have PICC if needed. Emla cream has been a godsend. I'm using it for my blood tests as well. Definately helps if you're needle phobic xxx

[angelblue]

Hi all

Thanks for your replies re saline. Also thanks for your recommendations marykamille - i hope you're doing ok.

Heres my next question (and my latest panic) has anyone had chemo when their neutrophils have been below 1.5???? and if so were there any detrimental effects??

I had my bloodtest this morning and my neutrophils have risen from 0.96 on Friday to 1.29 today so they are going ahead with chemo tomorrow because they're concerned that each cycle has been delayed so far. Of course now I'm in a panic that 1.29 is too low as it usually has to be 1.5 or over (dikat when my last chemo was delayed my neutrophils were 1.05 and not 1.5 as I previously stated..doh!!). By my maths my neutrophils are rising at about .11 per day so it should hopefully put me at 1.4 for tomorrow. AAARGH!!! nothing in this journey is simple is it??

It is good that we're all moving forward, some times more slowly than we would hope.  But the light of the end of that tunnel is definately getting brighter. xxxxxx

[DiKat]

HI Jayne1966

sorry you’ve had a bad couple of days. Was it the bone pain causing you hell. What pain relief did you take? 

Ive been for bloods this morning so waiting to hear if I’ve got the go ahead for Wednesday. Want to get on with it but can feel the anxiety building in me. Didn’t sleep well last night. Gonna get out for a walk later in the sunshine x

[Kitkat18]

Morning ladies, I should probably clarify that I had anti nausea meds given before the T infusion and was given odensatron to go home with but didn’t take them cos I didn’t need them. I also didn’t seem to have many effects from the steroids even though they were double dose or filgrastim this time. Yes it is great to be closer to the end of chemo and although I still have surgery and rads to go, beginning to see the light at the end of the tunnel. These forums have been a real godsend so thanks for being there! Xx

[Jayne1966]

After first T last Monday I was ok until Thursday. Fri and sat were hell but better yesterday. Hips are bad but I did have a reduced dose due to LFTs so maybe that's kept me away from the hit by a bus feeling. I have anti sickness with T the same as with FEC. I also have saline before all chemos. PICC line has been a godsend for me. I was so against it before I had it. It's a very personal choice though. My veins are really bad and this has saved them.

I find it reassuringly reading the posts that even though it's really **bleep** for all of us, we are all far along the journey now. The tone is suffering (if that's the right word)  but determined and strong. What a support we all are. 

[kc72]

Drunmerswidow good luck for today. 

Daffydilly pleased to hear you’re now home.

Mary Kamille thanks for tips re eyes. I’ve been having sore watery eyes so will try the soothing eye drops. Good luck for chemo Thursday. Sorry to hear you’re not out walking but hope the gorgeous sunshine through window is a little comfort. 

Anyone started with hot flushes as side effect of chemo bringing on menopause symptoms? 🥵They’re just starting with me, I’ve never been so warm. Goodbye jumpers, hello t-shirts! Any tips? 

Hope you ladies with low neutrophils are ok for your next chemo. And Angelblue hope you enjoy that Look Good Feel Better session on 5th. 

KC72 

[Drummerswidow]

Hi MaryKamille 

I know what you mean about is it all really worth it! Is it the injections that is causing you the lower back pain and hip ache. I know I suffer terrible with it especially around the 5/6 day of injections.

[DiKat]

Hi maryKamille 

Yes, I have a problem with my lower back on the right side and in a couple of areas in my right leg. Had xrays done and nothing other than normal wear & tear. My Oncologist said it's quite common due to the Filgrastim. I told him that I thought you only got the pains whilst having the injections. He said no not always, can be ongoing! I have been trying to just have a mile walk each day  but do feel it even after that short distance. X

[DiKat]

Hi Kitkat18 

Yes I was told didn't need anti nausea meds with T as not usually a problem. Like you say, I'm hoping that T will be better for me with FEC being so rubbish. Know what you mean about the aged 40 year wrinkles, my hands particularly look like old lady hands! Fingers crossed for you that all is well for Thursday x

[maryKamille]

Hi angelblue

I started a reply to your query about saline drips and then lost the post. I'll try again. I get a saline drip first and it has pre-meds in it apparently. I don't get nausea but take all tablets exactly as told for those first 4 days. After that I have some low dose steroids which I hardly ever use

I only get one saline bag. My hand (left only used) is very horrible looking. I have a lump in vein from first Chemo. My last nurse - different one each time - asked if it hurt. Other veins are purple/red and the whole of the back of my hand is permanently discoloured and bruised looking. I really don't want a PICC line and have made that clear, so I will carry on with cannulation as long as poss. My fault, then?

As to sore eyes - I have that really bad this cycle and am using Blephasol Duo lotion to clean eyelids and eyelash lid area (what eyelashes I have left, which is not many - part of the problem?) twice a day. I also use a fairly ordinary Boots soothing drops in between times. This has actually worked out well and my lids are much less red, swollen and the eyes less sore. I also had blurred vision in the evenings and that's gone now.

Anyone got back problems? All my lovely walks now curtailed as lower back and hips give me a lot of pain when walking. Maybe I shouldn't be doing it? I busy myself doing quite physical chores at home but walking - which I love - is definitely out.

Catching up with posts and hope to write more individual replies soon. But 4th Chemo on this coming Thursday!

Hope everyone is getting through and we are obviously all suffering from cumulative effects?

[maryKamille]

Hi Drummerswidow

That is so scary about the date on one of your drugs! I never get close enough to check mine but I do query the number of tubes - 11 at one count. They told me that they had run out of the 'larger' ones and so I had more to make up the amount. We really don't have much control over all this.

I have to weigh myself before the treatment on their scales (which do not provide a print out although they say they do - never have done so far) and tell the nurse what it is. She never writes it down and the scales are not accurate either. I do wonder if the difference in amount of drugs we receive is fractional? They use a formula, apparently, to calculate total body surface. They need accurate weight and your height to do that.

Hi to everyone else and it seems people are getting lots of delays in treatment because they are not strong enough or have a problem which postpones it. Those landmarks on the calendar are not quite working out I think. 

Lots of hugs and good wishes to you and everyone else. I have 4th Chemo this coming Thursday. Fatigue is already building with each one and this cycle I have had lots of lower backache and hip ache. All my lovely walks now curtailed and I have to keep resting even on short ones until the pain settles. Beginning to wonder if I should be doing any of this at all?

[Kitkat18]

Hi Angelblue, I’ve always had a bag of saline to check the cannula is in the right place and flush the veins at the end but only ever had the one bag not two. I had irritation during and some cording after my 3rd fec and was able to use the other hand for the 4th. T isn’t as harsh on the veins thankfully and the cording is now beginning to improve after one T.

Dikat, hopefully T isn’t as harsh for you as fec was, I was also told that if you have trouble with one it should be easier on the other. Yes I had the hit by a bus feeling on day 4, but had no nausea, so didn’t need anti nausea meds so much less constipation. I took one paracetamol and one ibuprofen every 4 hours which made me feel human and I recovered faster on T than fec and had more better days. I also didn’t have the fuzzy head and the aged 40 years overnight wrinkles. Although I found T a bit harsher at first think I prefer it to fec overall - just as well as I’ve got 2nd dose on Thursday if bloods ok! X

[angelblue]

Hi all

A question for all ladies who've had FEC ....how was saline administered for you during each FEC? The reason I'm asking is that I've decided against a PICC line (was due to have one tomorrow but cancelled it) and I'm going to persevere with canulla. I have some soreness in veins but it isn't too bad but I know that plenty of saline drip is supposed to help. For my first 2 cycles of FEC I had a bag of saline before chemo and then a bag of saline after. On my 3rd chemo I had a different nurse who didn't administer saline first and just started the chemo drugs straight off with saline going in at the same time. Then at the end she just continued with the same bag of saline until it had finished and woudn't give me any more when I requested it. 

I just wondered if other ladies experience with FEC/saline are the same as my first 2 cycles or my third...or even something different?!  I was led to believe that as much saline as possible was best to try to prevent vein irritation. Just hoping I don't get same nurse again as I did for my third FEC!! 

hi dikat - good luck for tomorrow. I hope your neutrophils are up and alls good for wednesday. The thought of changing regime must be scary. Hopefully your neutrophils won't drop so much with new regime and you can get this blasted chemo out of the way sooner! xx

[Jayne1966]

Angelblue, good to have you back. I never tool my pj's off yesterday !

[DiKat]

Hi Angelblue 

sorry to hear your neutrophils are low too. It’s such a pain being delayed isn’t it. It’s also made me realise that I need to be extra careful around bugs the whole time not just the 7-14 days as I seem to be neutropenic almost constantly. You haven’t got too far to climb at 0.96 so fingers crossed you will go ahead Tuesday. That’s made your Oncologist eat his words about definitely no more than 5 Filgrastim. I’m having bloods done Monday and will go ahead Wednesday all being well although I am dreading the change in regime! X

[angelblue]

Hi all

My neutrophils were too low again at 0.96 yesterday so chemo cancelled for monday. But I'm going back in on MOnday for bloodtests hoping for chemo on Tuesday but if still low then will be delayed by a week...yet again!!  My oncologist has now said I'll have 10 filgrastrim injections per cycle. I did ask about this last time but he said no they don't do that...hmmmm!!!

I've just read through the last 3 weeks posts - quite hard when my eyes are incredibly sore and sensitive to light...but by reading back I've realised that this is potentially another side effect of the chemo! Its really driving me nuts!! It seems we all go through quiet periods on the forum and we all have our ups and downs....and the downs can be really down with this new horrible scary thing in our lives...I long for my old regular pre-cancer problems!

@jayne1966 what a terrible time you've had. I'm so pleased for you that the scans you had showed nothing bad. Also so glad your daughter is ok as well. We've been through a similar scary experience over the last few weeks. My sister found out my 13 year old nephew was self-harming and looking at info about suicide on social media. He is the youngest in his year at school and on top of that he is very young and naive for his age and has been bullied in the past. Luckily he got an urgent referral for a mental health assessment and will be starting counselling in 2 weeks. Plus the school are now on board and keeping an eye on him. But its just so worrying. Been trying to offer support to my sister but its hard when you are so mentally and physically fragile yourself xx

@dikat - I hope you're ok for your chemo next week. When will you know? xx

@daffydilly - I'm so sorry to read what you've been through and I'm glad you and your husband are home xx

@kc72 - thanks for your reply. Your diagnosis seems similar to mine and you seem to have a good outlook on it. I'm booked on a lookgood course on 5th March and I'm looking forward to it. I'm also hoping to do complementary therapies at a local cancer support centre. But it can be hard to plan and book things when you're not sure when chemo going ahead. Although I'm getting some stuff booked in as soon as I know for sure Hope your EC4 went well. I read a bit further back in the posts that there was a debate about the F in FEC. Are you having all EC? xx

catlady37 - I see you've been struggling too. That was terrible that your chemo was cancelled due to an admin mix up.  I don't think they fully appreciate the effect it has on our mental wellbeing. Have you asked about psycho-oncology counselling? Although I've only had one session and will have to wait a while for my 2nd due to staff shortages I think that it will help me deal with all this better xx

Hope eveybody's managing to have a relaxing evening. I've had my pj's on since 6pm!! xxx

[DiKat]

Daffydilly

so pleased you are home. Hope you and your hubby have a relaxing rest of the weekend x

[Daffydilly]

DiKat good luck with next blood test. Delays just add to the stress.

I didn’t know there were different strength filgristim either but I guess it makes sense as we all come in many shape and sizes!! Bonus was neutrophils now 6 so didn’t have to last one anyway.

Have just arrived home😁😁. Hope we can now both stay here for a bit! Feeling much better but still haven’t managed to eat anything and have to take soluble potassium for three days - tastes awful and not helping.

Hope everyone is managing to enjoy this lovely spring weather. Didn’t realise how nice it was.

[Drummerswidow]

Daffydilly. I’m having first Paclitaxel on Monday but having to have bloods done again today. I always have my injections in the evening to help stop some of the side effects. One of my chemos they were checking the drugs and they had expired the day before. It was me who noticed the date before it was given! 

[DiKat]

I didn’t realise Filgrastim came in different strengths Daffydilly. I’ve got one left in my fridge, just checked it and it’s 300 micrograms. Haven’t had first T yet. Neutrophils were only 0.2! Bloods being checked again on Monday and will go ahead Wednesday if have come up to 1.5 or above x

[Daffydilly]

Nurse came to give me last filgristim injection this am and spotted it was wrong strength - 30 mg not 48 as per prescription. Maybe that’s why neutrophils went so low?  Losing faith at the moment. Still haven’t had what should be the last one, although two in the box so must have had one of theirs somewhere along the line. Wonder what strength that was🤨 Waant to finish them because  should start picking up by Mon.How did you get on with first T DiKat? Hope yours wasn’t too bad.

best wishes to everyone else. 

Did anyone one have trouble with 1st T and alright with others? Not sure I can face them at the moment.

[DiKat]

Oh no, that’s not what you need on top of chemo and all of this stress. Fingers crossed you get home soon. Take care x

[Daffydilly]

Thank you so DiKat, still in. Have been told I have norvovirus. Think we picked it up when husband was in A&E on Wednesday, as rest of family have suffered too. Hope to go home tomorrow but still feeling really queasy. Still can’t eat anything or drink much so banging headache as well. Oncology team were supposed to see me today but didn’t. Gather they were on ward but must have forgotten!!

Hope everyone else is faring better.

[DiKat]

Hi Daffydilly

sorry to hear you have been admitted. Hope you are begging to feel better. You need to get sorted but am sure you will be back with him soon. Pleased to hear you have your daughter to take care of him. Sending love x

[Daffydilly]

Husband was discharged yesterday but had to wait for me in A &E as I was admitted - high temp, stomach upset and Neutropaenic. Fell a bit better now but am here til at least tomorrow. Just seen chemo nurse and she thinks it T side effects rather than bug. If this is what it does, I don’t want anymore. Never felt so ill in my life. Daughter is now looking after husband as he can’t even get his tablets out the packets. 

[DiKat]

Shi, yes my hubby brings my honey to me with my first drink of the day whilst I’m still in bed so I don’t forget to have it.

Angelblue thanks for all the info, it will help when I get to have discussion with surgeon.

kc72, thank you, I may take you up on the offer when the time comes 

xxx

[Shi]

Dikat, are you having a spoon of the lifemel honey 1st thing in the morning before anything else? I took mine like that and was advised to let it melt slowly. All I know is that and a steak a day worked for me, but after 1st one I did have reduced doses and only 2 t’s before going back to fec for my 6th. Angel blue, the chemo is tailored to us all individually and your onc will be doing that for you. There are grade 3’s who have had 6 fec, 3fec & 3t, 4fec & 4t and I’m not sure but I think there have been grade 3’s who have had plaxi(something) too. You explore all avenues you need to darling it’s your journey and you do what’s right for you 💪💪we are here 👭👭😘😘 now bit of 💃🏻💃🏻🕺🕺💃🏻💃🏻On the jukebox, b52’s love shack 💃🏻💃🏻🕺🕺💃🏻💃🏻Dance round those kitchens ladies and blame me 😁💕💕✨✨Shi xx

[kc72]

Angelblue, sorry to hear you’re having a tough time.

Like you my plan has changed but believe those changes all made for my benefit. My Endopredict results showed that hormone treatment alone for next 10yrs would mean I’m still high risk of recurrence so chemo was added to my plan. Maybe it’s a personal thing but I consider myself lucky Having the test as I’d rather know as much as I can about my cancer and it’s characteristics to be able to tackle it in the best way for me. 

I’m sure all the teams around us have our best interests at heart. While we live it every day, they treat it every day using their training, experience and best practice. In contrast my knowledge comes from Dr Google (not helpful) and this forum (very helpful 😄). So I’m happy to leave the drugs to them and focus on the things in my control like my well being. 

Hope you find the support you need. Perhaps Macmillan or similar can help with counselling or complementary therapies. Do what makes you feel good - little things can make the difference. My skin’s been playing up and I was fed up with looking pasty, tired, having watery eyes and cold sores. So I thought I can do something about this and booked myself a Look Good Feel Better session (really recommend). It was great - aside of the fab goody bag, one of the best bits was being in a room of 12 women in similar position to me. Felt better in myself for going and that good feeling is going to carry me into EC4 tomorrow and my mid chemo point (another milestone). 

Daffydilly and Jayne1966 sorry to hear of your struggles. Hope things improve soon. 

Dikat I had an immediate recon using my thigh.  When the time comes if that’s something you’d want to hear an experience of happy to share. 

Thinking of you all. 

KC72 

[angelblue]

Hi Dikat

No I haven't had my 'proper' implant in yet. At first its a tissue expander and then the silicon implant is put in after radiotherapy. The tissue expander has some saline put in during the op and then after you've healed its topped up every few weeks until it matches your other boob. As I'm also small busted I've only had 3 small fills and may have another after chemo. I was very much the same as you re having a foreign body put inside my body. What made me go ahead with it was the fact that theres a small chance that any operation can go wrong but if the tissue expander went wrong for any reason or my body rejected it I would still have the option of the back muscle op (sorry can't remember what thats called). But if I started with the back muscle and it went wrong then there wouldn't be another option. Also the back muscle op is a much bigger and longer operation. The downside of the implant is that you have a second small op when the expander is exchanged for the implant and in 15-20 years time it may need replacing. I was also told that theres a very small risk of it causing another cancer. But with the back muscle op some women have been left in permanent pain and limited mobility. Such wonderful choices we have to make!! There is another option where they take fat from your stomach and you're left with a ceasarian type scar. That also had pro's and risks which I can't remember now but I (only just) didn't have enough fat on my tummy for that so it ruled it out for me. Although I think I would have enough now...I've put on weight with chemo!! xxx

[DiKat]

Jayne1966 

Ha ha, you're more chilled than me taking things at face value. I'm a nightmare patient and like to know numbers! X

[DiKat]

Hi Angelblue 

I'm still no wiser about what reconstruction to have as haven't seen breast consultant since diagnosis. I am a little worried about the thought of an implant, a foreign body, inside my body. I understand I would have to wait until after radiotherapy. Sorry for my ignorance but have you had your implant yet. What will it be/is it made of. Have they discussed safety with you and does it have to be replaced. I've got such small boobs anyway, only 32B cup...a part of me wonders whether I should ask for both to be removed and stay flat. Ahhhh, all these decisions, just don't know what to do. I'm sure things will be clearer once I've spoken to breast surgeon xx

[pastasmissus]

An ECG is the one where they put stickies all over you and do a trace of the electricity in your heart. An ECHO is the ultrasound of the heart looking at blood flow and valve function. That's the one they do for chemo and is the one that checks ejection fraction..

[Jayne1966]

DiKat,  I had ECG which was ultrasound so in guessing they did these measures. They just said all was ok so I took that at face value. Might ask onc at next appt. Have another scan in 2 weeks before next herceptin. Heart feels fluttery again but not sure if that is just injections. 

[Jayne1966]

Daffydilly,  stay strong. Maybe phone husband in hospital and take time for you at home. You are way stronger than you feel.  Gathering strength now for when he comes home is important. And stay away from tummy bugs ( you know this though ). 

2 weeks ago when I had a daughter with overdose and then got the clot and at the same time my partners soon to be ex wife was stopping him seeing 11 year old daughter just because she could, side effects were shocking and I felt like I couldn't carry on, but we do, and it gets better. 

What a roller-coaster ride for us all. Smile as much as you can. Force it. Smiling produces endorphins which make you feel better xx

[angelblue]

Hi Dikat

I think the test is only for HER- as I think was told its always chemo for HER+? Although I was told I would have to have mastectomy due to being multi-focal I was actually relieved as I think a lumpectomy would have left me with too much uncertainty. Have you decided on which reconstruction yet? I'm really pleased with the look of my breast with the implant option. Although the tissue expander can be uncomfortable at times, especially in bed. But if you went down that route you wouldn't have it in for so long with your surgery being after chemo. Yes I will go ahead with 4th FEC if my neutrophils high enough. I've been taking loads of manuka honey ...which is so expensive at £30+ a jar. Would my neutrophils be even lower if I wasn't taking it ...who knows....and thats how they get us to pay so much for it   

You and wahini are right about having a more positive attitude. Its letting cancer win if it takes over your life and I'm annoyed at myself for letting it do that recently. I've downloaded a CBT Health Anxiety course from an Australian government website (!!)  It seems to be really good and makes sense. I hope you don't get your son's cold. Chemo in winter is not the best when it comes to colds and bugs flying around! xxx

[angelblue]

Hi wahini

Good to hear from you. That's so cr*p that it came back after your lumpectomy. Yes the percentages and statistics are just so uncertain as you don't where you're going to be in them....if that makes sense! I did stop myself from researching stuff but as I've been fretting again recently about the high recurrence I started again. Then I start fretting that fretting is making it all worse..AAARGHHH !!! I am overly anxious healthwise due to previous experiences but I feel that I've lost myself through this experience. But to an extent I think thats something we all go through and we all seem to have up and down times. Your approach does sound a lot better for peace of mind. I think that just letting go of it and trying to live life again is the best thing to do. In the CBT health anxiety course I'm doing it does say that its not good if you keep pursuing things and booking further appointments etc and I wonder if thats what I'm doing with the private appointment. At least I have a bit of time to think about it and can always cancel it. Yes I'm going get in touch with my local service re complementary therapies. I think doing anything nice will help xxx

[DiKat]

Hi Angelblue 

I've not had oncotype either. Don't think its available for me with being Her2+ with multiple lymph involvement. I have been offered lumpectomy but think I will go for MX as cant cope with anxiety of it returning in breast but am fully aware it can return elsewhere. I'm naturally anxious, particularly around health but am trying to take each day at a time and get through this treatment. I know things will never quite be the same again but like Wahini says, stress can only make things worse. I certainly won't stress about some of the things I have in the past and have already got that couldn't give a s**t attitude over some things! I agree that Reiki is lovely and relaxing. Hopefully your private consultation will give you answers/choices and put your mind at rest. Your existing onc does sound set in his ways. Will you still go ahead with 4th FEC? Yes my neutrophils are very low again. Don't want to speak too soon but my son has had a cold/cough for the last couple of weeks so amazed I've not caught it. I've spent a small fortune on the lifemel honey, don't think its working but daren't stop it in case things are even worse x

[DiKat]

3rd attempt at replying!

Daffydilly I'm so sorry you are having such a difficult time still. It's not surprising you are feeling unwell with all of this stress on top of your treatment. I know it's easy for me to say but this difficult time will pass. Take one day at a time, you are strong and can do this. Thinking of you and your hubby ❤

[Wahini]

Hi Angelblue, I don't know my oncotype and I don't think I want to know. I am on 3 x FEC and 3 x T. I suppose this treatment plan came out of some sort of (software) programme where you enter parameters such as age at diagnosis, number of lymph nodes etc and they look for highest survival rate. It is very difficult to extrapolate from statistical number to individual case so I have come to accept that my prognosis is basically unpredictable. Couple of years ago I had lumpectomy with 95% survival rate, I thought I should be OK then, surely I am not in the unfortunate 5%? But  recently cancer came back high grade and my survival rate has dropped to 75%, so now I could very well be one of the 5% :(. It seems to be hit and miss really, also if you hear other stories. I don't worry too much about adding 6% survival rate here and there, doing this or that. For me living with anxiety is worse and high stress levels are proven to be unhealthy in itself so I go with the flow and hope for the best. I am an overthinker but I just gave up making sense of it all and feel better for it. Can you book complementary treatment at your cancer support group? I had Reiki and found it to be very relaxing.

[angelblue]

Morning all

Thank yo for your lovely replies. You forget how supportive this forum is. I plan to sit down for an hour this afternoon and read back over the last few weeks to see how everyone's doing.

I just wondered what chemo treatment plans other ladies are on who had a high risk or high intermediate risk Oncotype score? I've decided to go ahead with the private oncologist appointment which will be in 2 weeks time as shes on leave. In the mean time I'm going to get all my paperwork and questions together (I'm going to get my £420 worth). I'm also going to research what chemo other high scorers are on, so far it seems everyone has a taxane of some sort. I appreicate everyone's different and my oncologist took into account my mild peripheral neuropathy. But I find him very set in his ways ....very black or white...ie you either have 6 FEC or its 3 FEC and 3 Taxane and thats the only option. And as I wasn't suitable for 3 Fec & 3 T then it was 6 FEC. I may be wrong, and I'm hoping I am. But I feel thatover the long run,  the £420 spend on my credit card  will be money well spent if it gives me reasurrance or changes my treatment plan.....although I can think of nicer things to spend it on like a lovely holiday when the chemo and rads are over!!!

Dikat - sorry to hear you're also having problems with being neutropenic and its delaying your chemo. 0.2 seems really low. I hope you're feeling ok. x

Mai7 Thanks - I'll read your blog this afternoon x

Jayne1966 - jus from reading your last post it seems you're going through a lot. I hope you're doing ok. Yes I'll contact the local cancer suport centre as I believe they offer counselling. Thanks x

[Daffydilly]

Lost post yet again!!

husband still in hospital, half family down with stomach bug, and I’m waiting call back from chemo nurse as fell awful. Don’t know whether it’s T side effects or bug, but dodgy stomach and so much pain in my legs and head. Not sure I can do this any more.😒😒. Maybe I’ve just overdone it with visiting husband  - this week has been unbelievably bad so may just be reaction.

[Mai7]

Hi Angelblue, sorry to hear you’ve been struggling.  I had chemo in 2017 8xFEC-T and suffered terribly with my neutrophils dropping and not recovering very well.  I think 7 injections are only given with the Taxol but only 5 with the FEC. After all that I’m still here and back to “normal” and I know how hard it feels to be going through these ups and downs. Following the schedule is hard enough already. I had only a partial response to chemo with high risk for recurrence and I’m still here and NED. Here’s my story which you may find of comfort as well as some coping tips for anxiety: http://lifeafterlola.com/

xxxx

[DiKat]

Jayne1966 I had a muga scan on heart to check ejection fraction which is to see how much blood your heart pumps out. My ejection fraction was 59%. A normal ejection fraction is 50-70%. If the Herceptin caused it to drop below 50%, I assume they would have to stop it. I'm not totally sure but think they can also check ejection fraction by doing an ultrasound on the heart. I don't think ecg would give this info. X

[DiKat]

Nice to see you back Angelblue. Sorry you've been feeling so low. There seems to be a few of us that have been struggling. I'm surprised that you're not able to have more Filgrastim. Not sure if you've had chance to read my latest post but even though I'm having problems with it my Oncologist is talking about increasing mine due to me being neutropenic again. My chemo should have been tomorrow but delayed a week as neutrophils only 0.2. Although its causing me bone problems he thinks positives outweigh negatives. Yes £420 does sound a lot of money but I understand where you are coming from. If it gives you the opportunity to ask all the questions you need answers to, it would be worth it. Although it is a shame you can't get these answers from your current Onc. Stick with the CBT stuff, it does help and we are all here for support.

Take care x

[Jayne1966]

AngelBlue, that all sounds horrific and such a worry. Good to have you back on the group though, I wondered where you had gone. we all seem to go quiet when there is so much going on in our heads. Keep us up to date on what happens.

DiKat / Reddi, thanks for your comments earlier. What is baseline ejection fraction, thats not one I have heard of although I may have had it. 

I ahev 4 more THP so 4 all together. And yes 8mg steroids twice a day although forgot lunch time today and I'm not taking them now as will be buzzing all night so just taken one. Back to 3 a day from tomorrow. Its weird taking the high dose to bring down the immune system so that you don't reject the dositaxil, having done so much to keep the immune system up so far. Nice thing about THP is all done from bags, no seringes so doesn't feel as toxic and scary. I will also need herceptin for 12 months following all treatment. No injections until after chemo finished though as getting it introvenously. Have second ECG on 5th March to see how the heart is bearing up. Hips bad this afternoon but feel better now. Sorry DiKat that your chemo seems to have gone back a week. Enjoy the extra week of feeling a little more normal if you can withought worrying - so easy to say huh ?

Im going to the local hospice next tuesday as the Onc has referred me for councelling. ANGELBLUE maybe you could try some places like this ? They also do sit down yoga classes that I'm going to try if I can find the enthusiasm.

Take care all - most of all - smile xx

[angelblue]

Hello all

Long time no see! I haven't been feeling great the last few weeks - more mentally than physically (although fatigue is progressively getting worse but can't complain compared to other far worse side effects that  some of you have suffered). 

Even though it happened in December, I've been really struggling with the change in my diagnosis from low to high risk of recurrence. Mainly the fact that they didn't do the oncotype dx straightaway but only after I insisted which meant chemo didnt start to almost week 12 after surgery...which means that as I'm high risk it gave any rogue cancer cells more time to spread via blood stream and get settled in! That coupled with the fact that I'm on 6 x FEC as opposed to 3 FEC & 3 taxane which would be more effective but can't have due to already having peripheral neuropathy. And the 3rd thing that makes it worse is my chemo keeps being delayed due to being neutropenic each time even with 5 x filgrastrim each time (with the knowledge that chemo is given in 3 weekly cycles as its more effective then than the 4 weekly which I'm currently having). I was told my injections may go up from 5 but when I spoke to my oncologist he said no. I told him that others on this forum are having 7 or even 10 injections and he still point blank said no .....without giving any reason!!!  

I then had my first appointment with psycho-oncology. At the end of the session the counsellor said my anxiety levels were way to high and that I'd be seen again within a few weeks to help me start coping better. I phoned after 3 weeks of not hearing to be told that I wouldn't be seen again for at least 3 months due to staff shortages. If I'd been told that on the day it would have been better than waiting for an imminent appointment which actually wasn't going to happen!! 

I'm due to have FEC 4 on Monday...or it will be the following Monday if I'm neutropenic again. Today I phoned the local Spires hospital as I feel I would like the chance to have a proper detailed talk with a breast cancer specialist oncologist to see whether or not it would be worth risking having 2 or even 1 tax. The cost would be £420 for a 45 minute appointment. Its an awful lot of money but I'm thinking it may be worth it if it can put my mind at rest or even change my treatment plan (the oncologist i would be seeing also works at my NHS hospital and I would then change to her for the remainder of my treatment).

Anyway all that going on in my head coupled with other problems that life doesn't stop throwing at you just because you've got cancer. !!  I've now applied for counselling through my GP and also started working through some CBT self help stuff, which although I was a bit cynical is actually quite good.

I hope everyone's doing ok? I'll try and read back through all the posts and see how everyone's doing. Boy this is a long hard journey isn't it!

Anyhow its nice to be back  xxxxx

[reddi]

Whoops - tried to write this 4 times and when I finally succeeded, I forgot to say: My liver tests were fine all through TPH, but I also cut my cheeky 1 or 2 half punts in week 3, just to be safe.

[reddi]

@Jayne1966 That is good news that your liver results are already improving! Back in September, my ALT liver enzymes spiked after my 3rd FEC -- and stayed up for at least a week, so my first TPH got delayed by 2 weeks in the end. As it happens, my doctors already knew I have several simple benign cysts in my liver, which may have added to my liver's unhappiness. And as pastasmissus said, "lesions" is used to refer to any growth or change in the tissue, including benign stuff. Fingers crossed it was just a chemo blip.

[DiKat]

Hi Jayne1966 

Well that sounds positive that your LFT results have reduced! The support group sounds great and hopefully that will give you a lift. Guess it's the steroids keeping you awake. It's a much higher dose than FEC. Are you on 8mg twice a day for 3 days? How many Filgrastim have you been given this time? Are you having 3 or 4 THP? I've got to have bloods done again on Monday then all being well first one will be Wednesday 27th. Oncologist said I will then need further 14 Herceptin via injection and they would hope to get 1 or 2 in before surgery and the rest over the next year, heart function permitting. Was your baseline ejection fraction good? Hope you manage to have a good day❤