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Herceptin and Perjeta

26 REPLIES 26
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Community Champion
Community Champion

Re: Contact

👍 it is easy to forget the threads are open to the world, just keep safe 👍💕💕Shi xx

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Member

Re: Contact

Thank you, I meant to send it by private message, I’ll do that.

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Community Champion
Community Champion

Re: Contact

Just a reminder these threads are open to the world please use private message to share you private contact details. Contact the mods to get this post removed below with your details on 💕💕Shi xx

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Member

Re: Contact

Hi Preet,

I’ll give you call early afternoon if that’s ok? [phone number removed by Admin] speak later.

Vanessa.

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Member

Re: Contact

Hi nessa

 

Yes please please do call me today any time

Preet 

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Member

Re: Contact

Hi Preet, is it ok if I give you a call tomorrow now? Maybe early afternoon, if not let me know a good time, take care x

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Re: Contact

Hi nessa

Oh I'm so so greatly grateful for you accepting to talk with me on the phone.  Please let me know your number. I can either add you to wats app or call you. I live in uk

Please do contact me or leave me your number. 

Thank you so much as you know it is hard to talk to other people that dnt know what it's like. 

Preet

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Contact

Hi nessa. 

Please can I talk to you privately. I live in UK. Where do you live? Would you be happy for me to exchange numbers. I am a rare case as I can ot have chemo or radiation.

I would really be grateful to you if we could speak on the phone. 

Please do let me know if you would be happy to speak if not then its OK as well. I just wanted to talk more about tumour shrinking.

Look forward to your reply. I can send you my wats app mobile. 

Preet

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Re: Herceptin and Perjeta

Hi Preet, I’m sorry I’ve been slow replying to your private message, I hope you’ve received it now. I also live in the UK, Our cases are different and everyone reacts differently to treatment but I’m happy to talk, it can be overwhelming to start with.

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Re: Herceptin and Perjeta

Hi nessa. 

Please can I talk to you privately. I live in UK. Where do you live. I am a rare case as I can ot have chemo or radiation.

Please do let me know if you would be happy to speak if not then its OK as well. I just wanted to talk more about tumour shrinking.

Look forward to your reply. 

Preet

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Re: Herceptin and Perjeta

Hi Preet, I had quite a large tumour, 8.5 x 5 cms, the Herceptin shrunk it completely, as I understand it this can happen in 40 to 60% of cases. It can be very successful. I wish you well.

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Re: Herceptin and Perjeta

Hi nessa

Did you have a tumour? How much did the herceptin and pertuznab shrink the size?

Preet 

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Re: Herceptin and Perjeta

Hi, I had 8 cycles of FEC-T, having Herceptin and Pertuzamab alongside Doxetaxel for the last 4, then 14 cycles of just Herceptin and Pertuzamab. I lost my hair after the first cycle of chemotherapy, it started growing back slowly once I’d finished the 8th cycle. I have 5 cycles of Herceptin and Pertuzamab to go and my hair has grown back steadily throughout this treatment, nowhere as quickly as normal but it is very thick and curly!

Herceptin can be very effective at shrinking tumours, I had surgery after chemotherapy and I had a complete response, which means there was no evidence of the tumour left. Apparently this can happen in 40-60% of cases. I wish you all the best with your treatment.

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Re: Herceptin and Perjeta

Hi 

My onc told me that with herceptin and perjeta you dnt loos your hair. I have not started the treatment yet but he has told me only chemo makes the hair fall out. 

Maybe the hair gets thinner. I'm not sure yet. 

Not enough information given on leaflets or Internet. We can only go on what our sisters say on this forum. 

Who else. Has had these tow drugs has the hair fallen out? Do tumours shrink with herceptin?

Preet

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Re: Herceptin and Perjeta

Hi I just read your post about painful nailbeds, I too suffer from this and it’s so painful I can hardly type this!  Do you know if there’s anything that will stop nail surrounds from swelling up?

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Re: Herceptin and Perjeta

Hi Grassy - I guess the side effects I've been suffering maybe are due to the Herceptin then, rather than the Docetaxol. I seemed to be reasonably okay during the infusions but Day 4 I felt terrible and today is Day 6 where I seem to have developed sore nailbeds (particularly thumbs) and whilst not nosebleeds per se if I (very gently) blow my nose there is blood on the tissue.

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Re: Herceptin and Perjeta

Vaneysha My first Herceptin was on week 3 of Paclitaxel and I had a few side effects, mainly dizziness and nausea.  That was the worst week, it has got better each time since and I am now on number 5. The one long lasting side effect is a constant runny nose with minor nose bleeds. I am resigned to this now.
The Paclitaxel got harder and harder each week as the effect seems cumulative. I didn't cold cap and my hair started shedding week 4 so I shaved it to about 2mm.  Some more did fall out but it never all fell out so I very much regretted shaving it. My eyelashes started falling out after week 12!
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Re: Herceptin and Perjeta

Thanks everyone for sharing your experiences so far!!

 

I've started on herceptin 2 weeks ago now, perjeta has been dropped, I'm not completely sure why, but just rolling with it. I felt really crappy for the whole week after I had the herceptin but I'm also 4 cycles in to paclitaxel and think I picked up a bug that week, would be surprised if herceptin alone was the culprit, it floored me for basically the entire week. My next one is due next week, so I'll probably get a better idea how I react after that and the ones after. I'm going to be halfway through my paclitaxel course as of tomorrow (woohoo) and so far kept majority of my hair, so I'm waaay more upbeat about everything. Considering everything, chemo hasn't been as unkind to me (yet) as I expected it to be, so I'm hoping the first herceptin dose was just a bad week. X

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Re: Herceptin and Perjeta

Hi Vaneysha

I am having IV H & P. I have had 15 so far, 2 more to go. I had first 3 with Taxotere (chemo). My hair fell out with FEC but started to grow back with Taxotere and has continued to grow with H&P. My profile pic is my hair now. I finished chemo last April. I’ve found it really difficult to get conclusive side effects of h&p without chemo. I sometimes feel a little off, slightly woozy on the day I have it but fine the next day. I have had various aches & pains throughout but all fairly manageable. It’s so difficult to know if it’s left over chemo/surgery/radiotherapy stuff or the targeted treatment. It’s nothing like the scale of chemo though! Good luck with it xx

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Re: Herceptin and Perjeta

Hi guys

 

I've just started with Perjeta and Herceptin (and their aliases!) alongside Docetaxol. I'll be doing 4 cycles initially before surgery and then, I understand, 14 more after that.

 

I was a bit stressy about what to expect especially with the first doses being delivered separately and being monitored in case of reactions etc. but I seemed to do okay on that front at least 🙂

 

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Re: Herceptin and Perjeta

So far I've only had Herceptin along with chemotherapy so it's not easy to pin point any side effects. Also I have it by injection but I think you will have IV infusion because perjeta isn't available by injection and they give both together.

I get mild nausea about 15 hours after the Herceptin and a little extra dizziness (I get dizzy from paclitaxel).

My next herceptin will be on it's own so I'll find out more!

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Re: Herceptin and Perjeta

Hey grassy

 

Thanks for this. I'm now day 28 but with cold capping and so far kept hair. Was finally given go ahead for herceptin to start now, so hopefully starting that tomorrow during next taxol session.

 

Good to hear from someone a little further along than me. How are you finding the herceptin? 

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Re: Herceptin and Perjeta

Hi. I had 12 weeks of Paclitaxel along with Herceptin though not perjeta.

I chose not to cold cap and didn't lose any hair until about day 25. Then it started to shed and I shaved it leaving a light stubble. I greatly regret that now because it never fell out. I reckon I kept a good 80%  of my hair which started growing again straight away. I finished the Taxol last week and have had 4 Herceptins and my hair has grown about 1cm.

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Re: Herceptin and Perjeta

I hope it helps. Please keep in touch with how things go, I’ve found very few people who are having Herceptin and Pertuzumab together so it would be good to hear from you, all best wishes for the rest of your treatment.

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Re: Herceptin and Perjeta

Hey thank you so much for your message! That's good to hear and I'm really glad your treatment is going well, and that your hair is growing back. So it does sound as though they're referring more to the side effects of the chemotherapy rather than the herceptin and perjeta then. I'm on day... 25 and no real hair loss, the odd strands here and there, but on weekly low dose paclitaxel so I'm not going to get ahead of myself yet. Its really good to hear that those two drugs don't seem to cause hair loss by themselves though. Good luck with your treatment x

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Re: Herceptin and Perjeta

Hi. Vaneysha,

I had 8 cycles of FEC T beginning in February and my hair thinned so much after the first one that i shaved the rest off. I finished the chemotherapy mid August and my hair is growing back nicely, it isn’t long yet but it’s very thick so I’m happy that it will be ok. I had Herceptin and Pertuzumab alongside the last 4 rounds of Docetaxal and am now having them by iv every 3 weeks so that I’ll have had 18 in all. I’ve had 2 of the infusions so far and it may be that’s it’s slowing my hair growth but on their own it’s certainly not causing it to fall out. I have questioned the list of side effects for these 2 drugs as in writing they match those of chemotherapy, but so far I’m not suffering anything like I did on chemo, maybe a little achy, headaches for a couple of days, a little tired but I’ve been having radiotherapy alongside so it will be that too, and one very impressive bout of sickness and diarrhoea! All in all though I’m very happy and consider myself very lucky to be receiving this treatment, after this rather long post I wish you all the best with your ongoing treatment and will keep my fingers crossed for you that like me the Pertuzumab won’t have any effect on your hair.

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Herceptin and Perjeta

Hi guys

 

I know there have been a few of these posts but I have a more specific question regarding the side effects of Herceptin and mostly Perjeta in relation to hair loss. Everything that comes up on Google says there will be total hair loss with these drugs but that this is because of the taxol it's given alongside.

 

I'm 3 weeks into paclitaxel and I'm beginning (beginning!) to hold some hope that the scalp cooling cap is working for me. I've experienced minimal hair loss and was told if there's be shedding, it'd be apparent by now.

 

I'm due to start herceptin and perjeta next week, all being well with the cardiologist (I have a weak LVEF and am on beta blockers and ace inhibitors to beef my heart up in prep for the herceptin) and from what I'd originally understood, I was only getting herceptin, but now perjeta has been mentioned as well. I don't really know much about this drug but Google says it causes hair loss. However I'm wondering if that is indeed the perjeta itself or the fact it's administered alongside the paclitaxel (which so far seems to be responding well to the scalp cooling). I have just about got my head around the fact I might not lose my hair from the taxol but I'm now terrified these two new drugs are going to come along and sabotage it all!

 

Of course losing hair is a small price to pay but it's just taken me by surprise a bit as I'd always assumed it was just the taxol causing hair loss but now I'm worried. Plus the fact that perjeta was never really mentioned til recently so it's another new drug which wasn't on my radar for treatment.

 

Can anyone shed any light at all?

 

Thank you!!