AUGUST '17 Chemo Starters

[Ali S]

Morning ladies

Helen, Sue how did you get on yesterday? Hope you are both doing ok and managed to get some sleep last night.

MAHJfarn, Butterfly sorry to hear you aren't feeling so well at the moment. Sib, I hope you are home resting now.

Hugs to all August ladies xxx

[Jencat]

Sib, so pleased to read that your scans were clear and hope you're home very soon xx

[Butterflyflyfree]

I've not had a good one either 🙄 Stuffing totally knocked out of me after a good weekend. Day 6 so not unexpected I suppose. Glad I can just rest up and take it as it comes. 

Hoping for all August ladies to have a good night. Xx

[MAHJfarn20]

I may have been a little too hasty. Not had a good night last night, or day today. Bald head is cold and clammy, shivers and bone pain in Lower legs. Not felt like eating...which is so unlike me-I love my food. 

Hoping tonight and tomorrow I start to improve. X

[Sib]

Thanks forcsll your support ladies, its much appreciated. A few of us are definately struggling on T. Update on me, liver scan appears ok as does kidneys and gallbladder they think its just SEs. Had my canular out (which was in my foot as arm veins totally given up) and going onto broad spectrum oral antibiotics with view to get home. Still no appetite as food tastes vile! Hoping a corner is turned soon . Love and hugs to you all. . Xxx

[Sue58]

Thanks Cathy. Hugs to you to xx

[Cathysid]

Hi everyone,
Big hugs to those of you having hard times - sin hope you are improving and feeling better.
Just wanted to reassure you T ladies. I’ve been on TCHP from the start. I had the third one last Thursday. Side effects do tend to be day 2-8 mainly diarrhoea(though that only affected me on the first cycle) bad taste in mouth, and tiredness(I get dizzy and that chemical hangover feeling too)Drink lots of water, rest lots, Epsom salt baths daily, bit of fresh air daily, fingers crossed for you all.
I’ve been given a weeks worth of steroids this time and have averted the day 2 crash. The nausea I get is said to be related to the carboplatin not the T so hopefully you won’t get it! T also is less harsh on the veins. I’ve had no problems - usually they use my forearm rather than hand.
Fairy - my 6yr old asked me if she would get ill like me. I explained she can’t catch it from me and reassured her it is just one of those things that was bad luck and I will be better soon. So hard to know they are worried. I’ve not been advised genetic testing as I’m the only one in my family affected.

Take care all, and good luck today’s ladies, Sue and Helen,
Love to all Cathy x

[Sue58]

Thanks Michelle. Hope your doing good now on new regime ..good luck and hugs. X

[Mishy18]

Good luck ladies with your T chemo today please don't be put off by some of our experiences everyone is different and on the whole apart from my bloods playing up I personally found the Doxetaxal better for SE than the fec so just look after yourselves and rest when needed drink plenty of water is my best advice remember it's doing its job which is why we are all having it xx

[Sue58]

HelenP Good luck today..... my arm is like yours Helen, very sore, so I will be doing the same as you. Lots of water and the heat pad so hopefully the lovely nurses can find a good vein. I hope T Is not as aggressive as FEC !! But we will see. Have had 4 1/2 hours sleep due to higher dose steroid tablets..but I'm sure I will I will find sleep somewhere lol. (Maybe next week !!) hope August ladies are 'getting there' !!! Hugs xx

[Jencat]

Thank you all very much for your kind thoughts and good advice, it's much appreciated xxx

[Jencat]

Thinking of you Sib and hope you feel better very soon xx

[HelenP]

Chemo 4 for me tomorrow then, though the veins on both my hands are in a hell of a mess and are so painful I’ll be surprised if they get a canula in! Will be drinking 2 litres of water beforehand and getting heatpads wrapped around them for 30 mins before just like last time and hopefully it’ll do the trick again.
Good luck Sue58 and everyone else diving in again this week. One day at a time remember x

[Sue58]

Thank you Jay68. I do appreciate your message..yes it effects everyone differently and I know I just have to go with the flow..it is getting rid of any traces of cancer that are left..I have to keep reminding myself. It will be fine by December..lol. x thanks again and hope you are well on your way to good recovery..xx

[Jay68]

Sue58 - I see you're having your first T tomorrow and this is just to reassure you not to worry.

I am from the May thread and to be perfectly honest, the T is different from FEC/EC - but each of us is different too and thankfully for me I really didn't have too much of a problem. Days 3-8 are the worse - but just listen to what your body is saying - rest, sleep and eat just what you fancy - don't worry about healthy eating! Drink plenty - it's not always easy as the mouth does feel horrid but by day 9 you start turning the corner and it improves. You will probably experience diarrhea but again just listen to what your body says.

The best thing for me personally was after chemo I had mx and node clearance (which was almost 4 weeks ago) and when I went for my pathology report with surgeon I was delighted to learn - I am clear - the chemo had done a perfect job and destroyed all that was there - so although at times chemo seemed horrendous it was worth every minute for me!

So don't worry and I hope all goes well tomorrow x

[Ali S]

Evening ladies

Sib, sorry to hear that you are in hospital. Sounds like they are taking good care of you but it's not where any of us want to be. Hope your liver scan goes ok tomorrow and that you feel better soon.

MAHJfarn20, glad your chest is feeling better. How are you doing after your T? I didn't have any sickness either. Unfortunately the taste thing seems to last a while. Hopefully your scan will show no more areas of concern but at least you know they are being thorough.

Butterfly, how you doing? Good to hear that you are half way through now. My eyebrows and eyelashes are very sparse now and like you I have some hair on my head still. Hopefully you will have positive results from your scans.

Fairy, good to hear from you and glad you are out of hospital. I took sennocot after my last cycle and it worked too well so I didn't risk it this time, just stuck with the lactulose. It's good to hear that your side effects were minimal. I'm hoping mine will be too next time without the chest infection.

I've just taken my nail varnish off and found that most of my nails have acquired a white stripe across them. Hopefully it's not a sign that they are going to fall off. Thankfully my cough is subsiding and after 5 days without it my voice is finally coming back.

Best of luck those of you that are having their next sessions this week xxx

[Mishy18]

Sorry predictive text I meant to say Sib 😂 I hope you get better soon you are definitely in best place they will keep a check on you, don't worry everyone else about getting the T some ladies have no problems with it x

[Mishy18]

Siblings I'm from July starters that happened to me too on 1ST Doxetaxal it's a bit more brutal on the immune system I think my onc had to switch me to a new drug for my last 2 chemos as I have struggled right through the fec and the t! They always do what is right for you if they need to they will tweek your dose so it's more tolerable x

[Sue58]

Hi Sib..sorry to hear you've not had a good experience of T hope your on the mend soon. That must have been so frightening for you..!!
..I am also dreading this side effect too..it has affected a few ladies on the July thread also... I'm in at 1pm tomorrow for my first T and am not looking forward to it at all.. I've been taking claritin yesterday and today and will take it for all next week to see if that helps with injection and aches and pains..one can only try..
Fairy. I hope you are feeling much better.. good luck for Tuesday..!

MAHJfarn. Sorry to hear your going through a rough patch too..keep strong. X
Xena75 hope your good too..

Butterfly glad number 4 EC went well. Half way there..

Good luck ladies..bug hugs to all August ladies for your next chemos..

Helen good luck for tomorrow..
hope all goes as well as it can. Mary kate and Ali. Hope your doing ok. And cathysid and CK big hugs ladies. Keep going..xx

[Sib]

Hi Ladies, wuick update i was admitted to hospital friday with nutrapenic sephis, plus very sore red hands and inflamed red possibly infected skin area where chemo was given . Been treated round clock with iv antibiotics and potassium. Blood counts are all over the place. Also need s liver scan tomorrow, as precaution (please god nothing else). Been advised that my chemo needs to be look at as my body is now struggling to cope.
It appears alot of us are having nasty issues with doxetaxol.
Sending you all hugs and good wishes for speedy recoveries. Xx

[fairy]

also my oncologist is referring me for genetic testing as i was telling her how my daughter who is 4 asked me the other day would she have a lump when she was bigger, that really hit home. I also have 2 boys. She feels it is necessary as im only 31, they will also give me a screening age for Princess Pheebs then which will be awesome to know she will be monitored xx

[fairy]

also my oncologist is referring me for genetic testing as i was telling her how my daughter who is 4 asked me the other day would she have a lump when she was bigger, that really hit home. I also have 2 boys. She feels it is necessary as im only 31, they will also give me a screening age for Princess Pheebs then which will be awesome to know she will be monitored xx

[fairy]

Hi all...sorry to have been a bit quiet! They let me home tuesday and i seen oncologist thurs. They are reducing my dose of tax and perjetta as they that was the cause of severe diarrhea so fingers crossed! i was rather concerned about the dose reduction but it was explained that to of had that sort of reaction they were potentially overdosing me so it shd be fine...Now some tips for u ladies moving onto tax, i started taking cocodomal and ibuprofen alternatively every 4 hrs and also nystatin 4 times a day from the day after chemo and must say i hardly had any se apart from the diarrhea! i took a sennokot as was constipated 1st few days but will not be doing that again as may have contributed to the diarrhea...i also took clarityn daily for a week! Epsom salt warm baths were nice for the mild pain i had and also some ibuprofen gel.. i have my 4th one tueaday and prayin for a better reaction.. good luck to u all.. onwards and upwards.. 44 days ill be on my last one xxx

[Butterflyflyfree]

Day 4, cycle 4 EC for me. Halfway through 👏 Switch to Docetaxal, Herceptin and Pertuzamab for the next 4. 

Tiredness kicking in tonight, taste went yesterday - sweet better than savoury which doesn't taste of anything. But it didn't last long last cycle so hoping the same again this time. Anti nausea pills doing their amazing job again, I've been very lucky. 

Hair still weirdly bristly, and eyebrows thinning rapidly! Elsewhere very patchy 🙈 

Have repeat scan in the next 3 weeks, CT for lung nodes; a bit of a scary one that - are they secondaries or just scars?, ECG for heart before change of drugs, and ultrasound to confirm tumour reducing in size.

Hoping we all stay well this cycle. Hugs to everyone. Xx 

[MAHJfarn20]

Hi. Firstly an update. No pain in chest and finding it much easier to breath. Heparin injections for 3-6 months but hey-ho. 

Not sure if I mentioned last time but I have my mri scan in November on right boon to check for changes in 'dodgy looking area' on last scan. Surgeon did bring up double mx last time we spoke.

Had first cycle of T yesterday and the sickness hasn't been nearly as bad as with the FEC, thankfully. I had taken just 2 anti sickness pills...just in case but fingers crossed, I seem to be ok. Taste has gone off quicker though compared with the FEC. 

No other side effects at present. Hope everyone has a better week/cycle this this time. X

[Xena75]

Hi all, sorry I'm always weekday awol then catch up at weekends. Oh my goodness what a tough week some of you have had.

Sib, I'm sorry to here your news, I'm sure it must all feel never ending. I am going for a genetics consultation in a few weeks also, feeling a bit nervous but I need to know as I have two daughters and a sister.

Ali, im glad they have acted swiftly and got you in. It's awful having extra in top of the chemo and its side effects to deal with, hope you feel better soon

All you other lovely ladies, hope chemo 4 has been good to you, especially those swapping over to tax. For those suffering with the horrible "burnt mouth" se, there is a green mouthwash, difflam I think, they can give you to help with that.
I have my fourth one next Friday.

[Ali S]

Afternoon ladies

Cookie, sorry to hear about the piles I know they can be horrendous. I've not got any puffiness but did have the aches and pains. I didn't try the gel, but will try that next time. I used heat pads and Epsom salt baths. The doctors said mine might have been from my infection but we shall see next time.

Sib, I'm so sorry to hear your news. It must be hard to know that you face further surgery but at least you can take comfort in knowing that you are doing all you can to beat this. I'm interested that you were offered gene testing as I've been told that I probably won't be even though I'm under 50 and triple negative and my sister was diagnosed 2 years ago. It seems to be down to the postcode lottery again.

I'm still struggling with my chest infection. My cough is slowly disappearing but i still can't speak. I feel better in myself though and managed to go out for lunch with a friend. These small things keep me going. Currently on my side effect bingo card is hot sore feet, painful finger nails, sore veins and a sore rash down below......

Fingers crossed for all you ladies waiting for blood results. Hope your treatments can go ahead next week. Hope you all have a good weekend August ladies xx

[HelenP]

Just had bloods done ready for chemo on Monday...hopefully! Girls’ night out tonight at our local Italian and I think my taste buds and stomach are settled enough for me to enjoy a couple of glasses of wine...hopefully!
A bit of interesting info I found out by accident two weeks ago ladies. I was at the jobcentre with my son who was enquiring about volunteering work, I got chatting with the lady and my current situation came up. She told me I am entitled to receive PIP allowance which is the old disability living allowance. Her colleague claimed it last year while having chemo and radiotherapy for BC. It’s not means tested and you can claim it from diagnosis date. The payment can be anything from £22 to £149 per week/month (I’m not sure) according to your needs.
I would never have known about this had I not had the chat with the lady. May be of use to some of you ladies. It’ll go to good use for me, paying towards petrol to/from apptmnts and the heatpads I’ve bought to relieve pain so far! Not to mention headscarfs and the additional cost of the wig after using the voucher.

[Cookiesim]

Oh my goodness bless us all on this **bleep**e chemo journey. I know in a few months we will all be looking back saying wow it was tough but we did it!

I now have painful piles to add to my list, bloody constipation. How's everyone on taxols coping now with the aches and pains? I'm getting the best relief from ibuprofen gel and heat pads at the moment, trouble is I get my pads in position then I have a horrendous hot flush and everything gets chucked on the floor. I have noticed also my ankles are very puffy, I imagine the inactivity doesn't help, anyone else a bit puffy? 

i so hope everyone can feel a bit better this weekend.

(((((hugs)))))

💋

[Sue C]

Hi Ladies

Just popping in.... .

Sib so sorry to read that you will need further surgery. You must feel like its never ending. But they are doing everything for you to beat this horrible disease.

Sending each and everyone of you a massive hug

Sue xx

[Sue58]

Ali and Sib...my goodness you have both had a tough week..hope your feeling better now and are on the up....
Sib..sorry to hear your news, but like you said..you will take whatever treatment to get rid of cancer and I'm sure it will work out good in the end..I hope so... Ali, hope your feeling better too and your on the up...
Mary kate..lovely to hear from you and so glad you got number 3 chemo in..I won't miss FEC at all but am not looking forward to T either..!! I found that number 3 has been the worse..I'm a bit breathless this last week although both my grown up kids had a cold last week and I've picked up an annoying tickly cough. So maybe that's why in struggling with getting warm and feeling run down.. bloods tomorrow, then the dreaded T on monday all being well...
I hope all August ladies are well. Fairy , hope your doing well. Butterfly and Helen hope number 4 chemo goes well for you..love and hugs to all..this is a hard slog for us all..but were getting there...keep strong and positive..there is light at the end of the tunnel.....xx

[Sib]

Glad you are home Ali, hope you feel better soon. Im doing better since they changed abd modified pain relief plus hospital says as its dsy 8 im now over worst and they will manage SEs better next time. Also have bright red palms of hands, fingers that are no longer agile and a really rotten taste in mouth which is discouraging me from eating ( that may be a good thing) all SEs i believe. Tnis drug really sucks as alot of us are seeing,but we are getting it because they believe its our best chance. My oncologist actually apologised to me today for SEs im getting,!
Ive also had further bad newsz, ive tested positive for brca2 gene (my sister and i were diagnosed with bc a week apart with no family history but gene testing was done as precaution) this means my journey will continue after chemo with further surgery to remove my ovaries and a further mastectomy! A blow but i have to do whatever i can to live. It also means my sons need to be tested as they too may have it and it carriers implications for them and there future
Wow tbis certainly is a rollercoaster ride of a journey.
Sending hugs ladies and positive tboughts, we will not let this beat us. X

[Ali S]

Thanks ladies. It's so nice to be able to pop on here and share what is happening to me and know that you all understand and don't judge.

I'm home from hospital thankfully. Despite my chest xray being clear and the doctors not being able to hear anything, they are convinced that I have a chest infection. To be fair it does sound like I'm coughing up a lung at times and I've completely lost my voice. I have 5 days of antibiotics so hope to feel better soon.

Absolutely no help with the aching/pains though. Just told to keep on with paracetamol. I will be talking to my own oncologist about this before my next cycle.

Mary-Kate, hopefully you are turning a corner on number 3 now. A few of us did find it very difficult but once I was through the worst I managed to have a good week. I find that the Epsom salts do help with aching and hot weaty pads as well. I hope it passes for you soon.

Hope all you August ladies are doing well xx

[Mary-Kate]

Hi Ladies

So sorry to hear that you're in hospital, Ali, hope they're looking after you and sort out your infection - feel better soon...  And MAHjfarn20, seems like you're having a hard time too, hope you're doing ok.  Fairy, you too, hope you're out of hospital by now and are recovering well.  And Sib, Cookiesim, Xena75, Sue58, Butterfly, HelenP, Soworridl and any other August Ladies - hope you're all doing well - it seems like lots of us are having rough times recently.  It's quite reassuring in a way that we're all going through these tough times together and are able to support each other - I so appreciate reading everyone's comments, it helps get through when you're feeling rotten and emotionally down...  

Sorry I've been silent for a bit, I've been feeling pretty rubbish since my last Chemo, now Day 11 after round 3.  My immunity finally recovered slightly, only just enough to have Chemo thankfully so no more delays, even so it was touch and go if they'd go ahead as they were worried if I had a blood clot in my PICC line, but all OK in the end.  So I'm not sure if it was because I was only just over the white blood cell threshold before the treatment, but this time it's completely wiped me out - I saw some of you also found the third treatment the hardest so far.  They've reduced my EC drugs to 80% to see if I can tolerate them better this time - so I was hoping for less side effects because of this, wishful thinking!

Have had the usual 'chemical' hangover but also have been suffering from those horrible bone aches this time which I know several of us have had - although I'm not sure why I'm having them already with my last EC, thought they were only supposed to happen when you have T?  I've never had pain like it, and paracetamol/nurofen doesn't seem to touch the surface - seem to have spent most of last week sofa-bound, it's so frustrating and really gets you down that you just can't do anything, doesn't it?  Thanks for the advice of Epsom Salts, have ordered some...  Just starting to feel a bit more human now so hoping that's the worst of it over until the next onslaught - just hoping my immunity doesn't plummit again...

We're all getting there Ladies, there's light at the end of the tunnel and only a few more cycles for us all to get through. Big hugs to you all and take care xxxx

[Sib]

On no Ali, how awful. Hope you get sorted and well soon. The oncology specialist i spoke with yesterday said docetaxol was very harsh and as oncologists they maybe need to look at side effects of this chemo.
Sending a hug. Xx

[Ali S]

Hi ladies.

None of us seem to be doing too well at the moment. I'm currently on the assessment ward waiting to be admitted after having to call out the paramedics with chest pains. Heart seems ok but I seem to have an infection somewhere although not in my chest which, given the cough I have, they are surprised about. I've almost completely lost my voice and am straining to talk to the staff. They wont let me out as my heart rate is elevated. Still not been given any pain killers either and there are no beds! Hoping I don't have to stay in this chair all night........ xxx

[MAHJfarn20]

Hi Ladies.

Yet another rubbish week. Woke up last Thursday with excruciating pain in left side of chest and difficulty breathing in...so painful.  Tried relaxing and shallow breathing. Waited for district nurse to flush picc line. She was worried about temperature and called for go to visit. GP came and rang 999, querying pneumonia, leukocyte sepsis or pulmonary embolism. Spent rest of day and evening in hospital. Xrays and bloods done and to stop the tranexamic acid as it causes clots-after almost 12 weeks of bleeding, I stopped 6 days ago (Hooray). CT scan to be arranged. Sent home with more injections to thin blood... just in case. Had CT scan this morning. Confirmed it is a blood clot on my lung and told to inject heparin for 3 months. Just worried now that I will start bleeding again because I have stopped taking tranexamic acid.

[Sue58]

Ali and Sib...hope your feeling better soon and can get some relief from your pain..
try asking the lovely ladies on the July thread... as they are on to there 5th 'T' they may be able to advise...sending hugs. Take care xx

[Sib]

Ali contact your oncology unit, mine pboned today and are appalled at how im Suffering they immediately sorted me with more painkillers (gabapentin) and built in ibruophen with paracetamol for next 18 hours then they will phone me for update on pain. I was told we should not be suffering during chemo and they can sort it. What relief, feel better already just knowing i dont have to endure this. X

[Vintage]

Hi Sib
Sorry to read you are feeling so bad on the T AND H. I remember this time last year feeling simmilar. Do call your GP and ask for stronger pain killers to see you through. I took strong disolving co codamol and also Oramorph for in between the co codamols. These can make you constipated so also ask for Laxido sachets, these are great and you make them up to an orange flavoured drink. I found them much kinder than some of the other laxitive.
Hope your felling much better soon.
Love V x

[Ali S]

Sib, I'm so sorry that you are having a hard time at the moment.

I can't help with the symptoms as, having had a good day yesterday, I had a complete change last night and am really suffering with the aching all over today. I wasn't given anything for the pain, just told to take paracetamol so I'm struggling on with that. I'm still coughing and losing my voice. I use soluble paracetamol as that helps the mouth as well.

Am really hoping that this won't last long...... hugs to all August ladies xx

[Sib]

Im day 6 of first docetaxol and herceptin and struggling not sleeping, cant get any relief from aches and pains, tried epsom salts, gabepentin , clarityn, heat pad and ibuprofen(ad advised by a&e after visit on Sunday) nothing lifting pain, also painful 'burnt' tongue slight sore throat and loose bowels. Any tips welcome, in tears as so tired sore and fed up. X

[Cookiesim]

So I've read through all the posts and come to write and completely forgotten what everyone has written 😂 This chemo brain is a problem for me.

I hope everyone is doing well as they can.

Today I had my 2nd taxol on the weekly regime. Side effects from the T so far seems to be the aches and pains. I'm using wheat bags which I am finding helpful. Also some tingling, mild numbness in hands, guess this is the neuropathy?

Other side effects are present but mild & intermittent (headache, constipation, nausea, sore throat, dry skin) 

so far it's easier for me than the dreaded EC and all the problems I had with that

Anyway ladies we have come along way from our August start. Ups and downs but all staying strong 💪 keep up the good work 💋

[Butterflyflyfree]

Well done Ali for keeping going, enjoy your meal, what a treat!
Day 19 and I've felt normal today! Crazy stuff..but thankful I got there in the end. Xx

[Ali S]

Evening ladies, how are we all doing today?

I'm 5 days after my first T and have not been too bad except the aching in my hips and lower back. I'm also still struggling with the end of the cold I had last week whigh is annoying. Managed to do some shopping with my daughter today which was lovely (and expensive!) But feeling tired now. Off out for dinner soon then will be an Epsom salt bath and early night.

Ali xx

[Xena75]

Soworried - sorry for delay in replying. The heart problems I had were a heavy crushing type pain mid chest through to my back on and off through day 3 or 4 both first and second cycle.

My trop result (marker in your blood which shows heart distress) showed slightly raised levels. All tests apart from this came back good and heart OK. (I had ct scan, heart echo, ecgs, 24hr monitoring and angiogram) but still they regard this as chemo challenged the heart both times and the heart said no thank you, so they have decided they can't risk doing so again.

 Butterfly!y I hope you feel better soon, its good to let it out sometimes, be kind to yourself x. 

Fairy, hope you are well and home soon x

[Butterflyflyfree]

Thank you so much Sib, Ali and Sue..you made me cry but in a good way! I'm feeling brighter this morning, long may it last. It's so helpful, although sad, that we all feel the same..thank you for sharing Sue. It's crazy what we look forward to now! I have a flu jab Monday, oncologist Tuesday and chemo Wednesday - last EC before switching. 

Hope we all have a calm and better Sunday, love and hugs to you all. Xx

[Sue58]

Butterfly....I was like that on Friday..felt very low and depressed..cried several times during the day...just wanted everything to be as it was.!!!. A bit of normality...'.I miss work and my colleagues and the kids I work with at my school.. I'm not going out very much at the moment due to not feeling great and that's getting me down... I start wondering if I will ever get normality back...maybe after christmas..... we're all here for you butterfly.. sending hugs..
I'm feeling much better today and looking forward to a trip out to the hospital tomorrow for my oncologist appointment...!!! Xx

[Ali S]

Hi Butterfly. Hope you are feeling better today. We all have those days, although I admit I can pretty much tear up at any time these days. Sending you a hug xx

[Sib]

Sending a hug butterflyfree. We all get these days, treatment is difficult but we are here for you. X