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Anyone on TCHP for Her2+?

11 REPLIES 11
CrazyCatLady
Member

Re: Anyone on TCHP for Her2+?

Hello there @Mrs Kettlebell - much better over last few days (although bowels still not back to normal yet!).  Managed to get laundry done a few days ago and a 3 hour ironing stint.  And finally, last night I got a good 6 hour sleep in so feeling much better today and just done a 15 min circuit around our local roads.  So nice to get in the fresh air and clear the cobwebs away.

I couldn't do anything at all on the steroids....wanted to sleep so badly but head not letting me.  As I felt like I was drunk, thought I'd keel over if I tried to do anything productive...so left well alone 🙂

At least, hopefully, I'll have a good 10-11 days before cycle 2 on 11th March

Thank you 

xx

Sam xx

Mrs Kettlebell
Member

Re: Anyone on TCHP for Her2+?

Oh Sam - am sorry to hear you’ve had a rough time. Hope your oncologist can make some adjustments, and the additional meds do their thing, so round 2 is much kinder to you. 

Know what you mean about the steroid buzz.  I managed to get a full top to bottom house clean done on those days which was just as well as very little got done otherwise, lol!

Take care and will be keeping my fingers crossed for you xx 

 

CrazyCatLady
Member

Re: Anyone on TCHP for Her2+?

Hello there @Mrs Kettlebell 

Well cycle 1 itself was OK....just the 8 hours in a face mask on day 1 and contained in the unit so couldn't even go outside for a few mins to breathe properly.  Day 2 was a seemingly short 3.5 hours.

Initially the steroids gave me a wide awake buzz for the first 3-4 days....but felt absolutely shattered and couldn't sleep.  After that it all went downhill and had to call the chemo line pretty much every day as a new side effect started.  Am now speaking to my GP more than my mum for the additional meds lol 🙂

Hopefully, other than still being tired and waking up most morning with a banging headache (which I know isn't from being dehydrated as I'm definitely keeping my fluids up), I'm now, at day 13, pretty OK.

I've now got a full kit bag ready and waiting for cycle 2 and it's SEs....both ends of the scale ref the bowel issues, sickness as the anti-emetics not cutting it and losing 6lbs in one day (which normally I would be jumping for joy about!), then the stomach cramps hit....I think you get the general idea 🙂

Got my onco call on 9th March to go over everything and I've been keeping a daily log of how things progressed....could be a long call lol 🙂

Hair is still hanging on in, but guess it'll be towards end of next week when the clippers have to come out 😞

So, unfortunately, nope I didn't have a good time of it...hoping either they'll dial the dosages down or, if not, all the new meds I've got will keep things under better control.  But at least I now have an idea of what to expect.

Ah well, let's see what cycle 2 brings on 11th March 

xxx

Thank you 

Sam xx

Mrs Kettlebell
Member

Re: Anyone on TCHP for Her2+?

Hi Sam

Hope your first treatment went well, and after-effects have been low key. How are you getting on? 

 

CrazyCatLady
Member

Re: Anyone on TCHP for Her2+?

Hello @Mrs Kettlebell 

Thank you and yes, know I'm going to have to wait and see how I react to it all...but like you I need to know everything so I'm fully prepared 🙂

I'm certainly hoping to avoid the coedine but it's a last resort if paracetamol/co-codamol aren't effective.  But have heard that the Clarytin is good a keeping the bone pains away and as I am super allergenic anyway (ideopathic urticaria), may be an idea for me to take them anyway (but obviously going to check first)

Awaiting my call from the chemo unit on Wednesday so I have a plethora of questions to ask them!! 😁

I've got my own little Journey Kit in place, including a diary to log the day by day effects (and as you say so I can go fully armed to my onco consults).  Just awaiting my new (pink!) first aid box so I can store away all the relevant meds I'm going to be given too.  Onco said due to one of my other health issues (asthma) I'll be on anti-biotics for the duration too....think I'm going to be rattling lol x

I am known as being a bit of a super-organiser so hoping this trait will stand me in good stead for the coming weeks.

Hope you've recovered from your chemo and good luck with any future treatments to come xx

Sam xx

Mrs Kettlebell
Member

Re: Anyone on TCHP for Her2+?

Hi Sam

You’ve got a lot of good advice here.  I finished TCHP 6 weeks ago and 10mg Loratadine (which the Pharmacist ok’ed) helped me with bone pains (I had none!).  I personally stayed away from codine based painkillers during chemo - the steroids, chemo drugs and antiemetics can all cause constipation, and codine just compounded that! 

To add to the advice already given, everyone’s symptoms are different so your experience may be different to others on this forum. I kept a (simple) chart for each of the 21 days of each chemo cycle and recorded what medication and symptoms I had and when. This helped me to see the cycle of symptoms over each 3 week period so I could prepare ahead (and also remind myself that nothing lasts forever!).  It also provided a great aide memoire when speaking to the oncologist or nurses at each of the pre-chemo checks. Tummy issues (of all varieties) seem to be very common. You’ll get more questions about bowel movements than you though possible!  By cycle 3 I’d worked out the first few days I’d have constipation and proactively took Movacol (prescribed by the Oncologist) for the first 3-4 days which made a big difference too. 

The filgrastrim jab is really straightforward. It didn’t hurt and is over and done with in seconds.  Victoria Derbyshire posted a number of video diaries on YouTube when she went through chemo including her filgrastrim injection. I’m a kind of ‘need to know’ person, so found these helpful to get a idea of what treatment entailed. 

Everyone says it, but don’t be too stoical; use your helpline if in any doubt. Symptoms can escalate quickly whilst you’re on chemo, so always better to err on the side of caution. 

Wishing you all the best with your treatment. You sound very well prepared! 

CrazyCatLady
Member

Re: Anyone on TCHP for Her2+?

Hi @laurensjourney 

Thank you...thought I seemed to be the only one on this lol 🙂  Some good tips and I've got a mini stockpile of painkillers in already, including an unused full pack of codeine (as I suffer sometimes with frozen shoulder).

Also got in a 5kg tub of Epsom salts, courtesy of my daughter .... think she may have clicked the wrong quantity as we both said, what the heck!  Also got gallons of moisturising cream in (Aveena and E45) so good tip about keeping skin hydrated.

I heard that taking Clarityn before the filgrastrim jabs is good too and also got myself some numbing cream to put on about an hour or so beforehand, covered with a bit of clingfilm and plaster, also helps with the needle jab (I don't really do needles lol!).  Going to see if they're better to be done just before bed so I can zonk out hopefully (well after the steroids have cleared the system!)

Still got a few days (or seems like 45,609,001 hours) until I start first cycle on 17 Feb (doing H&P first day then the DC on second day).  The going for the full lot from cycle 2-6.  However I'm holding on to the snippet of info from my onco visit when he said they may review progress at cycle 4 then go to surgery so fingers fully crossed for that one!

Sizing seems to have gone from 10mm in Dec, to 27mm in early Jan and onco measured externally at 35cm (just for my left one...got another little bleeder in the right one too!).  But will have to wait until I get the MRI results in...I'm just too impatient lol x  But does worry me that this bugger seems to be growing at an exponential rate eek!

I've got an idea of what to expect from chemo, but I know everyone is so different....so I'm preparing myself for everything but hoping I'll get away with just a few rough days each cycle (so a few days each month will be managable).

I'm not cold capping though as I get migraines (and adds to the cycle time!) so just feel that going fully bald is going to be OK and it will grow back.  Know it's going to be difficult when it comes to doing the shave but got my daughter on board to help with the clipping....in between we'll probably to some experimenting so that should be a laugh 🙂

Thank you for all your helpful advice and hope your remaining treatment goes well 

xx

Sam 

xx

WestieRuth
Member

Re: Anyone on TCHP for Her2+?

im not sure what TCHP is i cant believe im er positive hers 2 at 54  ive done 3 chemos got 15 more to go then surgery then rads then more herceptain

laurensjourney
Member

Re: Anyone on TCHP for Her2+?

Hey there!

I am HER2 Positive also and have just finished 6 rounds of TCHP chemo.

my tips would be:

Codeine for the bone aches every four hours when bad , also baths helped.

I had muscle spasms a lot which the baths helped.

 my skin kept getting rashes from the drugs and very dry so i started taking D3 vitamin and moisturising more.

I cold capped and still have hair so would highly reccomend! take codeine before though to make the cap bearable and wear a headband on your forehead to help with the pressure of the cap.

i only washed my hair every five days as it falls out more in the shower. Also expect heavy shedding on week 2/3 i honestly thought it was all going to fall out but it slows down!

the filgratism injection i found okay just didn't like being injected.

Hope this helps! anything i have missed or further questions please ask.

wishing you all the best,

 

CrazyCatLady
Member

Re: Anyone on TCHP for Her2+?

Thank you @Bernard_BCN 

PICC line all done and dusted and only took about 10 mins and home already 🙂  Bit achey but got paracetamol to hand for later and doesn't look to have too much blood in the dressing.

And, FINALLY, have my start date - 17 Feb (so still another 2 week wait) but said there may be a cancellation slot offered if one comes up.

I'm prepared for everything I think, but hoping SEs will be as minimal as they can be with the meds on offer 🙂

Thank you Bernard xx

Bernard_BCN
Community Manager

Re: Anyone on TCHP for Her2+?

Hi CrazyCatLady

Just to say best of luck with the PICC line today. I hope it all goes smoothly. Please remember our team is right here if you need to chat about anything.

Bernard

CrazyCatLady
Member

Anyone on TCHP for Her2+?

Hello everyone

I'm just about to start my chemo journey (6 cycles TCHP) starting imminently - awaiting date this week once PICC line in on Wednesday.

I've been reading up about the various side effects (which seem to be soooo many!) and I know everyone reacts differently, but just wondered if there were any good tips on dealing with the SEs other than the meds they will give me?  

I'm prepared for the hair loss and turbans/beanies/scarves already in hand and daughter going to help me with the shave as and when that comes around (which I believe is normally around 2-3 weeks after first cycle).

Not looking forward to the filgrastim injections (for 7 days after each cycle ugh) and know that bone pain can be an issue.  So on this front have already got a catering size tub of Epsom Salts in with hot water bottle on standy lol.

As I'm also ER+ (both tumours) gonna have the joys of Tamoxifen later too....but that's for a later day xx

Thank you in advance and already following the Feb 2021 Chemo feed but not many there yet xx