I was diagnosed with breast cancer, grade 3 invasive DCIS, HER2 + at the end of June '17. I am currently having chemotherapy, 6 cycles of which 2 cycles of FEC followed by 4 cycles of PTH, then having a mastectomy with reconstructive surgery. I’m about to start cycle 4. I just wondered if anyone is on PTH and can share their experience. I’ll also be on Herceptin for a year afterwards and Tamoxifen.
Having had one cycle of PTH my symptoms were more hard hitting than FEC. I had 9 days of constant diarrhoea, fatigue and chest pains on day 5 and 6 after treatment. I ended up in hospital with the chest pains and wonder whether anyone has had this as a symptom. The diarrhoea I was told can only be controlled using codeine as it acts as a ‘bunging’ agent. The problem is you can’t drive whilst on it, so I only use it at the end of the day and bedtime so that it can take effect while I’m asleep. Feeling anxious about next treatment (29th Sep) as I know what’s coming. I see my oncologist on Monday, it may be that I can reduce the Docetaxal by 10-15% on next treatment as it’s this apparently that causes the nasty side effects…
Hi Andi71 - I had started chemo in May - I had 3xEC and 4XPTH - finished 4 weeks ago. Last Thurs I had first Herceptin only injection and this Tues I’ve had right mx and complete node clearance.
I am from the May 2017 monthly chemo thread - we are a very friendly and “experienced” crew - you may like to go and have a browse - you will find answers to most of your questions! If you need any other advice and support we can offer that too - just ask!
I have the same diagnosis almost Andi71. Gradex2 , ER+ and her2. Starting my chemo next wed. 3 xfec 4 docateaxol with herceptin and permuzetab. The mx and continue herceptin for a year. Will be keen to see how you both get on xc
Also a quick tip with regard to diarreah whilst on second regime of chemo - food wise - avoid all that is good for you - ie fruit and veg! - Eat bland high carb food ie mash potatoes, baked potatoes, pies, white bread, white pasta etc - we found more carbs really do help!
Now I’m over chemo I’m back to eating fresh fruit and vegetables and really enjoying them!
Thanks Andi and Jay. It is good to connect woth people having the same treatment regime and neoadjuvent too. Jay i hope you are recovering from surgery ok? Have you had any type of reconstruction? Andi i have heard that PTH is more hard hitting but different SE’s than FEC. Anyway i will wait and see after Wednesday xx
Hi Andi,
I’m on my second cycle of docetaxel herceptin pertuzamab and carboplatin. I had a similar experience to you first round - 9 days of diarrhoea, nausea, tired. Second time and no diarrhoea yet. I was given loperamide for the diarrhoea. Eating egg and potatoes seems to help too. This time I’m just dizzy, and sleepy and my face feels numb. Been inbed 3 days now with no will to be awake! Ugh. Sure it will lift soon x
Hi Andi,
Day 6 today - I’ve managed a dog walk the last 3 days but nausea is dreadful and the diarrhoea is back! Can’t be long now till I turn the corner.
I have 6 sessions of tchp to get through, then surgery/radio/hormones. On the plus side I can no longer feel my 2.2cm tumour in my breast - the chemo seems to have dissolved it! MRI scan after the next round to check. Looks like it’s a powerful cocktail we’re on! X
Hi Andi,
Yes, yesterday was the turning point. Much less nausea and energy increasing again. Phew. One more done!
I have a cocker spaniel and a border terrier. The spaniel is my shadow. If I’m in bed, he’s in bed with me! It’s good motivation for getting outside at least once a day - I’m sure it’s good for me even when sometimes I don’t feel like it!
Good luck with your surgery plan - don’t worry too much about size/shape of lump. Sometimes the cancer can be gone but scar tissue and calcification remain and can be felt.
I have 2 daughters aged 4 and 6. How old are yours?
Running round with birthday parties, visiting and swimming this weekend! Back to the normal routine.
Best wishes
Cath x
Glad your symptoms were better this round. No idea what dose I have but it was a little easier 2nd round - no nose bleeds or sore mouth this time and far less diarrhoea. Mainly fatigue and nausea(the worst bit - glad it’s passed!). Let’s hope it carries on getting easier x
Hi Andi. After thinking i was doing great after my first chemo i have always landed in hospital! Day 8 i felt great, day 9 i felt fluey and shattered then early morning of day 10 i had terrible throbhing back pain. They told me to come to a and e where they found that my white cells were 2. So i am having iv antibiotics just in case there is any underlying infection. I can see myself being here til monday as they want oncology to see me. I have had a good whinge too as its meant not doing anything with my kids this weekend. Anyway, they said my treatment will be reviewed as this has happened after numbet 1! We’ll get there ladies xx
Hi Andrea,
Sorry - been off the grid at an eco retreat for the weekend recharging my batteries!
Hope you are feeling better now. It does sound like a lot of people(a few of the September starters as well) end up in A and E with chest pains. It’s so hard putting our bodies through this - let’s hope you see some tumour shrinkage as that will make it feel more worthwhile.
My tumour is g3, er + her2 and after two treatments it’s definitely less well defined so there has been some effect with the chemo. I’m having an mri after my next round to assess it properly.
Round 3 for me on Thursday all being well. Here I go again, ugh!
Ali - hope you are on the mend and get let out soon. You must be pretty fed up of being in hospital by now but it is the best place to be to get those important iv antibiotics.
Andrea - keep us posted and hoping it goes well this week.
Hello again,
I’m just sitting in the waiting room at the Christie ready for my bloods and oncologist appointment in preparation for chemo tomorrow. Feeling ok now so hoping all will be well.
Great news with your tumour, Andrea! It’s so reassuring to see results - it makes the rough days seem more worthwhile. Eager for my MR I now - I can’t feel my lump at all today, just a slightly denser tender area now rather than a well defined lump. My lymph nodes in my armpit seem to be shrinking too - one was nearly 2cm, now pea sized!
Hope your surgery doesn’t spoil Xmas. It’s a tricky one - don’t want to delay but a week later would be nicer for family times
The eco retreat I went to was car mabon - near llanberis in north wales. It was just what I needed. I would recommend a chemomoon after every chemo(side effects permitting).
Ali - hope you are doing ok and back at home now. Hopefully they will assess your doses before the next round.
Side effects wise - I had a dry mouth after the first round but not the second. Have you got alcohol free aloe Vera mouthwash, the pain relief mouthwash from doctor. Sip lots of water. Watch sugary sweets - might encourage oral thrush - but if nothing else helps it’s worth the risk!
My hair on my head and armpits has all gone. Fingernails are looking dicey -lower quarter is white now. Skin is ok - slapping on the aveeno daily. Guts are gassy and bloated tummy but no diarrhoea, thank goodness. Who knows what the next round has in store?!
Take care
Andrea, hoping the weekly sessions are better for you - it’s meant to be easier on the body and less side effects too.
I have a full week of tapered steroids this time round, top end antinausea - newer version of emend and cyclizine so hoping to feel less like I’ve hit a wall tomorrow. So far usually day 1 - loads of energy in morning on steroids, cleaned the house, walked dogs, prepped tea, now I’m shattered. Took the afternoon steroid dose at 3 pm so hoping to sleep tonight. Last round day 2 and 3 were awful - like drunk and hungover at same time - hoping the continued steroids might reduce this. Must remember my nivestim tonight too - 7 days again. Apples already taste weird so something is afoot with the taste buds. Slightly nauseous hungry feeling too.
Loving sparkling mineral water and red bush tea today - sooooo thirsty!
Cxxxxc
Hi Cathy and Andi. Round 2 for me yesterday andvit all went smoothly. My onc said i wasnt neutropenic when in hospital, just a bit low and my levels recovered by themselves. So my trestment stayed the same.
Awake at stupid o clock now with a dry mouth so drinking water and sucking a sweet! Gurgling tummy too but nothing too bad.
I have one more fec then go on to PTH. I asked could i do weekly but my onc said i couldnt have P with weekly. Are you still having P Andi?
Hope you are both ok and copjng with side effects without too many problems. It really is a waiting game xx
Hi,
Just thought I’d share my good news and find out how you are all doing.
MRI results today showed complete radiological response- or no sign of cancer on scan after 3 sessions of tchp.
3 more to go and I was offered a reduced dose - I said no! It’s bearable and I want to blast any little lurking cancer cells into oblivion.
How is there weekly chemo Andi?
Let us know how you fare with your first T Ali.
Any new PTH ladies?
Love and look after yourselves, cx
Hi Andi,
Hope the ct scan goes well tomorrow in prep for your surgery in January. Glad the weekly PTH is treating you better.
I’ve found that with each treatment I seem to be tolerating it a bit better, luckily! Still wiped out day 4-9 but diarrhoea has been less, taste changes still there but no bleeding gums or nose since round 1.
Interesting that you are having the night sweats too - I’m having hot/sweaty/cold flushes from evening to morning. Not enjoying losing sleep! My doctor says likely I’m peri menopausal due to the treatment. Oh well. We will see what happens when we stop the chemo!
Take care,
Cx
Sorry to hear that your CT was so stressful Andi but glad you got it over and done with x
Glad your SE’s are better too Cathy x
I had my 3rd and final FEC yesterday and it was fine. Usual post chemo feelings last night but feel better this morning and just getting drugged up with steroids and anti sickness!
I had a great week of feeling almost normal before chemo this time so that was great and i am hoping for the same again before next chemo which is PTH!
I am anxious about thew new regime but then i was anxious about FEC.ni will just have to see how it goes.
I am taking all your advice! Hope you both have a good day today xxx
Andi - can’t believe they made such a hash of getting a vein for your ct scan! It really gave me a fear of needles when I had an experience like that back in August. A session with the complementary therapies team helped me get over it - hypnotherapy and relaxation techniques to stop the fear. Glad you got there in the end and have a date for your op. It’s good they can do a reconstruction at the same time. My op hasn’t really been discussed yet - it was suggested it might be early February when I was first diagnosed but I think they just give me details a step at a time to avoid overload!
I too had a period after chemo 1 in September, but so sign of one since then. I’ve been looking online for how to combat the night sweats. Going to try and eat more soya(if I can face it!), exercise is meant to help(I wish - flat out in bed this week after chemo), ladycare magnet is advised(haven’t looked at that yet), evening primrose oil supplement and sage tea are said to be helpful but I’m worried about having sage as it’s not recommended if oestrogen positive. Hmm.
Ali - hope the last fec treats you well and good luck with PTH next time,
Hi Andi i sm doing ok thanks. How are you feel8ng?
I am day 11 after Fec 3 now and its not been too bad. Still had the pain from the gcsf injections, for the last 2 days but they’ve eased now. Thank God!
Will have my first PTH on 29th and feeling apprehensive about it!