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Pertuzumab

geordiex
Member

Re: Pertuzumab

try hydromol ointment and lotion and the bath/body wash worked wonders on mine ointment 500g tub very thick but lotion is lovely you should beable to get it on prescription xx

elliedog
Member

Re: Pertuzumab

Hi ladies. I wonder if you could help me. I've been on just H and P for the past 17 months and although I haven't had a scan for the  past 12 months(my onc doesn't believe in relying just on scans) I am still classed as NED. I feel well with very few side effects from treatment.However one side effect that can sometimes drive me mad is the itching/stinging on the tops of my arms and lower back. The onc believes its the Pertuzumab that causes the itching but presently has no solution. I've tried creams, antihistamines,drinking even more water to no effect.Although I know I am very lucky to have responded so well to this combo it would be so nice to be able to carm the itching down in the evening and at night. Is there anyone else that has this side effect or has any ideas that would help carm it down. Thanks ladies xx

madge1
Member

Re: Pertuzumab

Hi LD that's great news !!! Long may it continue !! My treatment deferred for a second week as had temperature etc. over the weekend and wbc was raised !! Hopefully third time lucky next Monday !!
Xx
LemonDrizzle
Member

Re: Pertuzumab

Thanks everyone x
bertie1
Member

Re: Pertuzumab

That's great news LD long may it continue so pleased for you xx
elliedog
Member

Re: Pertuzumab

Seems like this combo is kicking ass. Stable and shrinkage is great to hear.x

Barton
Member

Re: Pertuzumab

Hello Lemondrizzle, such good news - I'm so pleased for you! Long may it continue! Hugs, Barton.x

roxy12
Member

Re: Pertuzumab

Hi chocolates, I have just seen your post from last week. I am the same as you. Scared of the scans but pleased when results are good. My onc did say to me though that they can find out lots through the blood so try not to worry too much.My onc is great and he got me through a bad patch a few months ago.

That's good news about the elderly lady too! Hope your treatment works for a very long time.

 

Lots of love Sheila. Xx

 

 

roxy12
Member

Re: Pertuzumab

That's brilliant news LD! Stable is good but even slight shrinkage is great! Well done. Go celebrate.

Lots of love Sheila. Xx 😀

dennymac
Member

Re: Pertuzumab

It's sooo great to hear that info! I've had great shrinkage of Breast lump after just one treatment which is mad and when I hear this kind of positive results it really lifts my spirits xx
fergal_jay
Member

Re: Pertuzumab

Excellent news
LemonDrizzle
Member

Re: Pertuzumab

Scan results today and they're ok thankfully. Stable with slight shrinkage to main ones, only a few millimetres but much better than the alternative. Working for them all - in liver, lungs and bones as well as boob, so as Chocolates said its a good combination x
LemonDrizzle
Member

Re: Pertuzumab

Thank you. I've been having H&P only since June and things have been stable - just panic more when it's appt with onc time as my mind goes into overdrive. x
Chocolates
Member

Re: Pertuzumab

Hi ladies I'm on the h&p combination after 7 rounds of the dreaded docetaxol. Exactly a year after diagnosis last November I was classed as ned. My onc very much of the opinion that it is a great combination and will work for a long while. No scans booked at the mo - that's a different psychological issue that I need to get past - but is becoming easier to accept. Just check TM's initially every three weeks but now on to every other treatment.
I do strongly believe in this combo - there is an 80 year old having the same at the hospital - she couldn't have docetaxol, but has also got to ned after 18 months with it working well on her liver, lungs and bones. Keep the faith ladies, LD, it will be ok - I've got my fingers crossed for you. As ever with me it's my mind that needs convincing on an almost daily basis that I'm doing ok. That's my biggest battle.

Huge hugs everyone.
Hxxx
dennymac
Member

Re: Pertuzumab

Being a glass half empty person isn't always a bad thing... I'm quite similar as I imagine the worst so that I'm prepared for whatever I'm told - its a coping mechanism for me. There have been fantastic results with people having just H and P so try and not worry too much xx
madge1
Member

Re: Pertuzumab

LD, I only had one lot of Docetaxol as had severe reaction 3 days later with raised temp, neutropenia, and severe diarrhoea and hospitalised for 13 days and then home with a IV syringe driver with a drug that dries up all the bowel secretions !!!! Not nice at all !!! I can understand why you feel like this and sometimes I do and then I think No it's not going to get the better of me yet !!!! I'm going to be around for a long time yet with my family and friends and enjoy life to the full as much as I can !!! Please please me a half full glass person, we are here for you anytime !!!
Xxx
LemonDrizzle
Member

Re: Pertuzumab

I read this a while ago but couldnt have full course of Docetaxol so that's why I'm not as hopeful. I'm always a glass half empty person I'm afraid.
LD x
dennymac
Member

Re: Pertuzumab

I read this forum article and it really gave me the boost I needed 🙂

https://community.breastcancer.org/forum/8/topic/773955
dennymac
Member

Re: Pertuzumab

Sorry!! NED is no evidence of disease 🙂
fergal_jay
Member

Re: Pertuzumab

What does NED mean plz
dennymac
Member

Re: Pertuzumab

Hey everyone! Wow 17 months fingers crossed!!

I don't have any definitive results as just had one cycle so far of taxotere, P and H but I must say... My huge lump I had in my right boob appears significantly reduced already! I hope it continues to shrink and get as good results as some others have said!

I've heard that some girls even become NED so I pray that this shrinkage is a good sign! I thought I was imagining it as honestly didn't think it would shrink as fast! But suppose it came up really quick so maybe it'll shrink as quick xxx
madge1
Member

Re: Pertuzumab

That's really encouraging Ellie-dog !!! Gives us all hope that this will keep us stable !!!
I'm feeling better each day, was upset that they wouldn't give me my treatment yesterday!!! Life revolves around hospital appts !!! Back to hospital on Thursday am for heart scan and then in the afternoon I am seeing the breast surgeon to discuss surgery as I have not had surgery as had double whammy diagnosis in Dec 2013 but still would like double mastectomy (left boob invasive and right boob dcis ) !!! Was told it would be for psychological reasons only, but I still want rid of them !!!! Bloods and portacath flushed on Friday ready for treatment Monday !!!!
Joys of it all.
X
LemonDrizzle
Member

Re: Pertuzumab

Thanks for your encouraging words, 17 months is wonderful x
elliedog
Member

Re: Pertuzumab

That's great news Fergal-Jay its great to hear how well this combo works. I've been on just Hand P for nearly 17 months now. I feel well and life goes on and I am sure your mum will will start to feel the same with time. LemonDrizzle there have been some amazing results with this combo even better results than when Herceptin first came out. My onc thinks if you respond to this combo then it is a combo that can last a long time. Keep well ladies.
fergal_jay
Member

Re: Pertuzumab

Don't think like that lemon it'll keep working
LemonDrizzle
Member

Re: Pertuzumab

Thanks for the good wishes about scan results- the waiting seems to get harder the longer I have H&P as I convince myself it's going to stop working.
Julie, hope you didn't get to the hospital and sent back home. I had stomach bug last treatment, but they gave it to me seeing as I'd gone for it although they weren't too sure at first.
Nicky, pleased that your questioned your infusion times and you're now having shorter treatment days.
Look after yourselves
LD x
nicky08
Community Champion

Re: Pertuzumab

Hi fergal jay, that's great news for your Mum -and you! What a relief for you all to know that H and P on their own are making a difference and no reason to think this won't carry on 🙂
Good luck LemonDrizzle for your results, hope you're not stressing too much waiting for them.
Sorry to hear you've been suffering from a virus Julie, fingers crossed you feel better soon and can carry on with treatment.
Well, I possibly rocked the boat a bit when I had treatment on a Friday as I asked about having reduced times for infusions and observations! I don't think anyone has challenged this before, not even for Herceptin which has been a fairly routine drug for the past 10 years or so! Anyway I eventually had agreement for 30 mins for Perjeta then a 30 min wait then 60 mins for Herceptin with a 30 min wait after. Still can't believe I needed Herceptin over 90 mins in total including observation time but I will have a quicker infusion next time. All very strange when other hospitals are obviously reading the Perjeta literature and dosage guide like I did and know its only the first few infusions that need so long.
Nicky x

madge1
Member

Re: Pertuzumab

Fergal-jay, that's great news regarding your mum's results on H and P !!! You all must be relieved.
My treatment was deferred today until next week as I've had this virus which is going about !!! Was upset but understand why !!
LD, good luck for your results next week !!!
Love Julie
Xx
LemonDrizzle
Member

Re: Pertuzumab

I've been wondering how your mum's results were - they're obviously very good and you must all be feeling relieved and so happy. I love hearing good news on this combo. Have to wait till next Tues for mine so still worrying as we all do waiting for results.
Sleep well tonight
LD x
fergal_jay
Member

Re: Pertuzumab

Lemon is your results back Wednesday??
fergal_jay
Member

Re: Pertuzumab

Well mum had scan results today. As she is just having h and p and no chemo we were pretty worried.about results but breast lump.has reduced and the 3 traces in her liver have also reduced!!! So we are to continue with treatment. Happy, was hoping at the least for stable so to see improvement is very good news.
fergal_jay
Member

Re: Pertuzumab

4 days till results, the wait is making mum and dad ill waiting for her results. Everyone on tender hooks
LemonDrizzle
Member

Re: Pertuzumab

Dennymac, seems to be a problem with obtaining reports from radiography unfortunately. I've been back for results in a shorter time, but report not been done. Although onc could read scan, the official results weren't there so a waste of an appt really as I was still worried afterwards until onc could ring me when report was ready. Not ideal to wait so long, but at least results will be there.
LD x
dennymac
Member

Re: Pertuzumab

3 weeks?! That a long time!!!! It's usually a week to 10 days depending on the hospital but if ur anxious U shud call ur BCN to chase results xx
LemonDrizzle
Member

Re: Pertuzumab

Fergal, I had a scan yesterday but have to wait 3 weeks for the results which is a horrible wait.
LD x
fergal_jay
Member

Re: Pertuzumab

How long do u all normally wait for scan results plz. The waiting is making me anxious
madge1
Member

Re: Pertuzumab

Hi Nicky,
When I have my treatment with H & P, I have a 15-30min flush, herceptin for 30mins, then a 30min flush, then the pertuzumab for 30mins then a 15-30min flush. I have one set of observations done just as I have the herceptin. Hope this helps you !!! I can be there for a lot longer due to the unit being busy !!!
Julie x
Chocolates
Member

Re: Pertuzumab

Nicky -I have no flush between mine. Herceptin first and then perjeta - no gap. Lastly a 15 minute flush before disconnecting me. Then I'm off as soon as possible. Do you think it's to do with your heart problems previously and they feel that spacing it out and observing you is necessary?
It's strwnge isn't it - when i first had this combo I thought this is a small price to pay for my life but recently every three weeks has become a chore. I know I should be grateful but by the time I've done bloods and had my denansomab I'm at the hospital every week. I'd now definitely describe it as an inconvenience but ultimately it is keeping me alive so just have to get on with it.
xxx
LemonDrizzle
Member

Re: Pertuzumab

Nicky, that seems such a long time to be there. I'm treated at the Christie in Manchester and I'd like to think that they are following protocol correctly! I used to only have a 10 min flush between H&P but that was increased a few months ago but only to 30 mins, not an hour like you. I hope you get more information so you can go armed with facts to your next onc meeting.
LD x
fergal_jay
Member

Re: Pertuzumab

Mum has only had 3 doses so far first 2 she was in around 6 hours last one was quick compared just 3 hours.
nicky08
Community Champion

Re: Pertuzumab

As ever ladies, you have helped me with info about this combo 🙂
Do any of you have a wait between the Pertuzamab and Herceptin? I'm sure they are giving me an hour between rather than just a quick flush through (if my chemo brain can remember correctly) and then an hour after the Herceptin. This took about 5 hours in total last time which is just as long having the chemo as well. I don't mind if it's what this regime dictates but it seems my hospital is adding more observation time than is really necessary and seeing as I have to have this every 3 weeks indefinitely it's a lot of extra hours spent!
Any other ladies who can add their information will be greatly received as if I am to ask any questions at my next oncology appointment it will be useful to have as many of your experiences to explain why I'm questioning them (again!)
Nicky x

LemonDrizzle
Member

Re: Pertuzumab

Hi Nicky, I'm on cycle 16 of H&P and each one is given over 30 mins. I have to be given piriton first which is also 30 mins and recently they've increased the flush between H&P to 30 mins as well. With the waiting when the pump beeps and the nurses going to get the drugs then the final flush of my Hickman line it usually takes at least 3 hours. Once it's done though there's no observation time and I escape as quick as I can!
Fergal, it's always a scary time having scans and waiting for results. Like your mum, I have scan next week but don't see onc for results for 3 weeks so it's a worrying time. I hope your mum does well with this combo and the results are what you all want. Keep us posted about the outcome.
LD x
fergal_jay
Member

Re: Pertuzumab

Thanks chocolates, really hope so x
Chocolates
Member

Re: Pertuzumab

Hi Nicky, mine takes about 2 and a half hours and that's it. By the time they've connected up my port and disconnected me afterwards. I have no observation time after. Both h and p are given over half an hour each. I've had 14 rounds now.
Fergal jay - good luck to your mum. It's a good combination so fingers crossed it's working.
nicky08
Community Champion

Re: Pertuzumab

Hi fergal jay, I hope Mum gets good results and the H and P combo, plus hormone tablets is doing a good job for her. I have to report that I didn't get any significant shrinkage in my liver mets from having the chemo so I hope the same combination that I'm also now on will continue to hold me stable or even better.
A question to all ladies having P and H together, how long are you in the chemo ward for to have these two infusions? I don't mean the waiting around bit but i seem to be in for ages with quite an observation period after having the Herceptin, even after having no adverse reactions for the 7 or so infusions I've already had. Just wondering as I'd like to ask the nurses to shorten that time if it seems other hospitals treat you quicker.
Many thanks and hope everyone on this combination is keeping well.
Nicky x

fergal_jay
Member

Re: Pertuzumab

Hi all, well mum has had 3 treatments of herceptin and pertuzumab obviously no docetaxol so no chemo with it but they've started her on hormone tablets too. Now I'm getting nervous, she's got her ct scan monday although won't no results for a couple weeks after but I'm so praying for good news!!!! Scary again
dennymac
Member

Re: Pertuzumab

Thanks lemondrizzle 🙂 I feel like a rabbit caught in headlights right now expecting to wake up from this nightmare xx
LemonDrizzle
Member

Re: Pertuzumab

Hi Dennymac
I'm sure you will start to feel that you are more in control once you start treatment and feel that you're finally doing something to help yourself. Like you I had the double whammy and was terrified about the treatment which took longer than normal to start because of my severe anxiety. After reading about the poisons, I was convinced I would have a reaction and even asked the nurses where the emergency life saving equipment was on the ward. I can laugh about it now, but at the time it was so scary. This treatment will work very well for you and I hope you don't suffer with too many SEs. Ask us all any questions at any time, no matter how silly or inappropriate they may seem as there will be someone who will be able to help and put your mind at rest. Just remember the time waiting to start is definitely the worst and you will start to feel more optimistic.
LD x
dennymac
Member

Re: Pertuzumab

Hey everyone

 

I recently had the double whammy of lung mets with my primary ICD and am 32.  I was managing ok until my last appointment where I got my treatment plan and it finally hit home that the treatment wont "cure" me and have had a really shaky couple of days.  My onc wants to give me tax, H and P and reading everyones comments here has actually made me feel like this treatment will hopefully do wonders for me. 

 

I start treatment in just over a week and to be honest I am terrified, I was putting a brave face on but now im just thinking all the worst care scenarios. Once I start treatment hopefully I will feel like im doing something about this and manage to pull myself together. Then hopefully when I get a CT after a few treatments I'll see that my tumours are shrinking or at least stable.

 

Sorry for the rant lol but after reading about perjeta im actually thinking that the oncologists have a lot of faith in it so I should too 🙂 xx

fergal_jay
Member

Re: Pertuzumab

Hi all hope the new year finds you all well and coping well with treatments. Mum has had her second dose of pertuzumab and herceptin this week and you'd honestly think she doesn't have this vile disease other than not working at the moment to try relieve some stress shes just mum of you get what I mean. The fear of not having chemo at the moment is still in our minds but she seems very positive and no SE to speak of so far. Hopefully early February will bring some good news after her body scan