Anyone else here on weekly Paclitaxel and 3 weekly trstuzumab?

Dear Lizb6

I have been reading through your messages and hoped I could join in the loop.

i have completed my first lot of chemo - 12 weeks EC and am have just done week 3/12 of Pacliataxel with Trastuzumob & Peruzamab injections. I don’t have a PICC line, but endure canula fun and where did those veins go this time, on a weekly basis.

So far most of what i have been through is pretty much reflected in the posts, which in itself brings comfort.  One question that has sprung to mind is, am i right in thinking most of you have already had your operations?  I have HERS 2 Grade 3 and they are shrinking the cancer first, my operation is pencilled in for the end of October all going well.

As far as I know i am to have radio therapy after my operation, and it has been a relief to hear that it is now 5 sessions as a rule of thumb, however I will bear in mind my final outcome for that may be different.  

I hope this message finds you in good spirits and hopefully over some of the hurdles you are going through.

best wishes

Risha

Welcome Risha, and really glad that you have joined the group, but sad that you have had too.   I think that you are correct that most of us had surgery first.   Mine was at the end of October last year.   Where did that year go?    Like you I had grade 3 HER2 positive cancer, but I think because it was only 2.5cm they took it out first before chemo.   We have all had slightly different journeys, and I copped the full 28 days of radio, as my consultant said that because the cancer was aggressive he wanted to throw everything at it.  I was gutted as I thought I would get away with the shorter protocol, but to be honest it wasn't as much of a bother as I thought it would be.

In the meantime, I am still battling with thrush and they have just moved me to a new regime which could last 6 months.   Lets see what happens.

Just a word of caution to people on trastuzumab.   Make sure that they are doing the injection sub cutaneously.   I had a nurse who went rather deep (vertical needle, rather than at 45degrees.    I could hardly walk that night and it took 3 days for the muscle to settle down   Trust me, you do not want that!

1. Hi there, I had check first  for 5 months, the extra month was due to me deferring a few times as my bloods weren't up to scratch. I then had a break for 6 weeks then had surgery. I am currently waiting for radiotherapy as when I presented for it several weeks ago, we discovered my wound under arm had not healed so I'm having it packed and dressed every 2 days until it has healed from the inside out. I have started kadcyla now and just home from 3rd session. No real side affects and hair still growing back. Only thing is k get tired and not feeling very physically fit but mustn't grumble. Just starting on anastazole from tomorrow which is long term, 5-10 years so ses how that affects me. All in all it's a waiting game at the moment and keeping  very much to myself as don't want the risk of covid or anything else while I'm immune suppressed. I have a porta cath which initially was quite painful and sore but now its settled down it's much better and saves all the stabs each time as my veins started to disappear every week and was making treatment an issue. I recomend this as it doesnt  need constant attention and I can shower and do everything without worrying about catching it or getting infection. I've not had any injections apart from the one I had for a week after each round 1 of chemo. This was in the tummy each day, to help my white blood cells recover after the chemo. Good luck with the rest of your treatment x

Hi all

Welcome Risha i hope you are ok. As Lizb6 said we have all had a slightly different journeys. I had surgery first in january as all tests indicated an early stage HER2 grade 3 cancer but once they got in there it was nearly 5cm. They did an amazing job of my boob and although there is a slight dent you could never tell. Chemo/Radio and trastuzumab to follow.

I have just started to get that sparkle back in the eye and hair is definitely returning as my moustache is back!!

Desperate to dye the grey hairs that are coming through but it would probably all fall out, menstrual cycle also returned 6 weeks after chemo... i had forgotten all the joys of being a woman but my body is doing all that it can to recover and im very grateful to be in that position.

I hope your journey is as smooth as it possibly can be and i send my love

D

Hi Risha and good luck with your treatment. My tumour was HER2 grade 2 and was 2.2 cm. As mine was early stage I had my surgery mid January after receiving my confirmed diagnosis just before New Year. Like Danielle I have a normal looking  boob with hardly any puckering and a very neat scar. I appreciate the care the surgeon took but at the time I could only focus on getting rid of the cancer. I think I was lucky about the position of my tumour and I rested up and healed up well. The oncology team know what they are doing and we all have different paths. 
I am 2 months post chemo and am getting back to normal. All my hair has started to come back and I now have a crew cut and have abandoned the head scarves. I actually found it quite liberating going scarf free and might even keep my hair in a shorter style.  My periods have not returned and I am not bothered if they don’t. I would have gone through  menopause in next couple of years anyway. I am getting on fine with the Tamoxifen and hot flushes have eased up. 
Liz - I have a cracking bruise after last weeks Herceptin and I don’t think she went in at the right angle. I can’t watch it go in as I find it really stings so I look the other way and wince! I did notice I was really tired the next day and wonder if that is my usual side effect now. In general I feel much more human now and colleagues have commented on how I am back to normal. I still feel more tired and don’t feel my stamina is back but I figure it will take time after everything my body has been through. 

K

Really glad that people that are getting through treatment are beginning to bounce back and becoming hairy again!!!!!    Actually had to start shaving my legs again :(   But losing the hats has been a real boost.    Just also dealing with a very sore and cracked nipple from radio which is a bit of a nuisance, but am not yet a week post radio, so hoping that will settle soon.   Fatigue levels are definitely there, so waiting for my bounce to return along with the hair

Glad to hear people are starting to get back to normal and sending positive wishes to those of you still mid-treatment. I too have mostly abandoned my hats as hair is re-appearing everywhere, if somewhat grey!! I still have some fluid retention in my boob but it’s not as bad as it was so hoping this will settle. I too had my operations first - Dec & Jan. Fatigue is still an issue for me and foot/ knee pain. My oncologist says it’s a combo of chemo / trastuzumab/ no HRT (I used to be it on after a hysterectomy). My cancer was ER negative but still advised to steer clear of hormones, just in case. My joints feel like an old lady some days, but overall things going in the right direction 

Dear Lizb6, thank you for getting back so quickly.  As you say it is a different journey for everyone - including my neighbour who is going through similar but again in a different order.  

I hope your new regime proves to be better and things settle for you, I still haven’t quite got my head around how all this change is affecting me (they say ignorance is bliss) I believe it was talked about earlier in the thread how you are congratulated for doing so well etc, however when you are faced with the fact that this treatement is the only forward and there really is no other option you just have to take it on the chin.  

Thank you for the advice on the trastuzumab injections.  I have had one so far and it went ok, I think I am due my next one this Monday.

Have a good weekend and love to you all.

As you say Rish01, take it on the chin and it will pass.  One day at a time, and counting those days and treatments really helped.   I also found that walking helped me.  There were days when it was hard, but getting out and about in the rain, snow and sun really helped me.   The other thing with the injections is long and slow, waiting a few seconds before they withdraw the needle helped me.   

Now just forking out for a chiropodist as my feet are a bit of a mess, some things just take a long time.    Sadly patience is not my middle name!

Hi there ,jumping in to say, my feet are OK but I  desperately need a dentist. Can't find an nhs dentist for love nor money. Has anyone else had any joy?