Perjeta, Taxol, Herceptin

Hi every one,

I would be really grateful to hear how your all getting on. I'm about to start on herceptin, perjeta, docetaxel and carboplatin on in a wk. This will be my first treatment since being diagnosed so don't know what to expect.

Thanks 

Hi everyone,

I just saw this thread and wanted to respond!!

I was on this combo from February to May 2018 and since then been on just the herceptin and pert 3 weekly. I also have Denosumab injections every 6 weeks, zolodex injections every 12 weeks and take Letrazole daily. I’m on this until it stops working...

I have consultant today, nervous after last ct...

its hard to know which side effects are from which drugs, however I responded well and hope to continue like this for many years. The worst for me we’re the small things like mouth ulcers. These got worse towards the end of the chemo. Also I lost a few nails, but as long a it’s working!

I find the side effects now minimal, still get tired on occasion, but I sometimes forget I’m ill! Although the menopausal symptoms are really starting to kick in now. If anyone has any advice??? 

On a separate note I had a port fitted in February and this had made such a difference to the treatment, my veins were not obliging! So much easier now.

 I hope all are well, take care

Jo xx

Hi Jo,

It's good to read your reply, I'm finding lots of people on the normal chemo combo but not many similar to me, I to will be on herceptin injections every 3 wks for a yr and hormone therapy after my surgery.

I'm due to start my first chemo, herceptin and perjeta on Monday, nervous, did you loose much hair on this combo? 

Luckily my scans were all clear so I can concentrate on the one area, waiting on results was making me nervous to, I hope your results are good news, if all the treatment has done it's job then it should be positive.

I can't help with the menopause part but I'm pretty sure I'll be needing that same advice soon.

Good to hear from you and best wishes for your scans 

Hannah 

Xx

Hi Hannah,

Good to hear from you.

i had consultant appointment yesterday, made to discuss last ct scan. First of all I was seen by a doctor not my consultant and was then told that my scans hadn’t been reported on! 

I don’t mind that they’re late, although I would have liked to have my mind put at rest, but what a waste of time!! It’s almost an hour to the hospital and then if you’re lucky half an hour to find a parking space!! I’d have rather the appointment was cancelled, at least someone could have made better use  of the slot! Sorry rant over! 

I fid lose most of my hair, I think most people do with docetaxel I’m afraid. I shaved my head once it started falling out, but had my wig ready. Just over a year after finishing the chemotherapy my hair is back, short and very thick, all hair starting to grow back more than before including leg hair which didn’t grow much before! 

I had and stop do have both hormone therapies through infusion, not injection. 

Good luck Monday, I’m sure it’ll go well, let me know how you get on

Jo xx

Oh no,

Sorry to hear about the appt waste of time, it's so frustrating and i feel your pain, we all know the time before treatment is hectic with different tests etc but the admin organising mine was shocking. 

I travelled to a different hospital which like you is a good drive plus parking nightmare just to sign consent forms which my oncologist forgot to do when I was sat in front of her 2 days previous. Heart echo, bloods I had to organise myself as no referal made internally. Kidney function still not done! 

It's not good and makes it stressful when we have enough on our plate with treatment etc. Rant away hun as we are allowed a good moan about it lol.

I had my wig consults today, hoping to hold onto most of my hair through the cold cap but still got back up now in case it sheds too much. May I ask what you use to wash your wig? 

Hope you get your results through soon and they don't mess you about any more 

X

Hi Mgbucks,

I just read your details as I logged in after long time. Your harmone receptors and treatment plan is exactly same as mine. Triple positive. I was diagnosed in October last year at 36 years old with secondary BC Mets to bone. 1st cycle was horrible. But things started getting better with each cycle. May be I got used to medicines. I had neuropathy after each cycle until 3 cycles and then it disappeared. Never had it again. I had fissures which was scary but they too are gone now. I did yoga in morning and walking in evening after 4th cycle which made things bearable. They did not do any surgery as they thought it would not have any benefit. I have responded well to medicines and the tumour in breast disappeared completemy after 1st cycle. I am now on herceptin and denozomab injection. I don't have any side effects with these two. 

Pls let me know if I can be of any help.

Hi Hopesarehigh,

It's lovely to hear from you and from someone who's on similar treatment, how are you doing at the mo? 

I'm now half way through, 3 more cycles to go, i was diagnosed with grade 2 2.5cm lump breast cancer in May. Luckily my bone and CT scans were clear.

So far on treatment in doing ok, not had any naturopathy (hope uve not just jinxed it lol) feel a bit iffy for a couple of days following my treatment, although think the steroids might not be helping with that. I'm using the cold cap and although I've thinned on top you wouldn't notice much loss.

I'm due an ultrasound this month but as far as the oncologist can feel it all appears to be having a good effect. I will have a mastectomy once treatment finishes.

It's really reassuring to know you got on well too with the treatment, and effects got easier as it went on, and I think fitness is a massive benefit, I'm missing my running but trying to get out walking as much as poss.

I am a little anxcious about the herceptin injections for the next yr, it's good to know others experiencing it.

Your doing amazing and seem to be dealing with all the treatment really well, hope i continue in the same way.

Hannah x

Hi Hannah, 

I finished my Chemo in Feb and since then perjeta was also stopped. Apart from brittle nails I do not have any side effects from Herceptin. May be there are some but I don't  feel them after going through all those side effects from chemo. Taste buds change was most consistent through all chemo cycles. 1st 3 chemo it took me 10 days to be able to taste food. Afterwards it kept getting better within 5 to 7 days.

I am glad your CT scan was clear. Don't worry about side effects from Herceptin, it will not be as bad as chemo and very much doable.

I lost my hair. Was not offered cold cap. But I am not in UK. After living in London for 9 years we moved back for an assignment back home, India. Was diagnosed 6 months after moving here. God has been really kind. I have had my bad days but have bounced back every time. My entire family is here in India. They came to be with me next day I told them about it. My only worry has been my daughter who is now 5 Years. I just want her to be independent and may be prepared mentally before I leave her. She is too small to understand what's wrong with mumma but she knows I have not been keeping well. She seemed fine to me but her teacher told me she would go quiet in school saying my mum is not well. I am sad. This broke me down. Couldn't believe she was going through all this as she seemed ok. This is my only worry. Else I don't think too much. Worrying won't change anything and I am positive with these medicine I will do good. Sorry to tell you all this.

I will urge you and everyone who is reading this to try to be postive. Positive vibes are really very important. If you get a chance watch movie Heal, in case you haven't yet. 

Sending you strength, prayers and hugs.

Roli

Hello Roli 

i was so moved to hear about your little girl feeling sad that her mummy isn’t well. 

I just wanted to tell you that I’ve also had exactly the same treatments as you and eventually the herceptin and perjeta stopped working .. but there are more drugs for us triple positive people. 

I’m now having Kadcyla which is a targeted chemotherapy and is so much easier to tolerate I haven’t lost my hair and I’ve been having this drug for a little over a year now. 

My understanding is that there are more drugs coming too so you’re quite right to feel positive. 

I hope you can continue with the herceptin for many years before you may need to try something else. 

Love to you 

Bren x

Bren are you still a member here hun im due to start Kadcyla to get rid of some remaining cells as Herceptin alone didn't blast two of the removed lymph nodes although it did the other three I had 13 in total removed but only 5 were positive