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Pertuzumab

dennymac
Member

Re: Pertuzumab

Wow ellie great that u only need to see your onc once a year ☺️ Good luck with it xxx
elliedog
Member

Re: Pertuzumab

Hi fergal, I agree with Nicky they will always be checking her blood count so they should be able to pick that up. I tend to mention everything to my nurse practitioner who I see every 3 treatments and I have my bloods taken every 3 treatments. If she has any concerns with any side effect i might have she speaks to my onc. So far she has been spot on with everything and I only see the onc once a year when I am having scan results (next Monday).Your mum should mention her side effects, however in the early days of P and H it does tend to throw up different side effects but I found in my case my body settled down and apart from the horrible itching that Pertuzumab causes I carry on with life as normal. If your mums blood count is playing up it is something they can deal with. Your mum is on a very good combo as P and H is proving to have some amazing results even without the chemo.If you have any concerns get your mum to speak to her medical team in my experience they will do everything they can.
Angela x
nicky08
Community Champion

Re: Pertuzumab

Hi fergal jay, sorry, I forgot that your Mum didn't have the chemo. As you have said she is getting regular blood tests, as we all do, before each treatment cycle of H and P so any dip in red blood cell count would be picked up. Maybe it is just down to the side effects of the two drugs, quite understandable in the circumstances. You can always download the drug information from the Macmillan website, the drug manufacturers website or this one (although I haven't checked the BCC one) and this will give a list of side effects which may help you and your Mum work out if it is the drugs causing her tiredness. I would also mention it to her onc as they may be able to help recommend nutritional supplements or refer her to a nutritionist at the hospital.
Nicky x

fergal_jay
Member

Re: Pertuzumab

Hi nicki, mum couldn't have chemo she has h and p combo but also has started a hormone treatment too. Ellie do you think it's worth her mentioning it on her next onc meeting just in case. She has a blood test regularly and they always say it's good but you have me worried now. She sleeps quite justice lack of energy when she has to get up and walk anywhere.
nicky08
Community Champion

Re: Pertuzumab

Hi
I definitely got the heavy legs and fatigue whilst on the chemo part of this regime but thankfully the keg part has pretty much cleared up since I've been off the chemo since December. It may take a while for your Mum to feel better as well s the side effects seem to last quite a while after the chemo is over with. Plus of course the SEs of the H and P to deal with which although don't seem as bad they are there even if in the background. I do however get quite tired but I'm sure this is down to being back on hormone treatment which affects my sleep.
Hope we are all coping though and this combo keeps working its magic.
Nicky x

elliedog
Member

Re: Pertuzumab

Fergal, I've been on this combo since May 2013 and after about 8 months into it I had the heavy feeling in the legs and then cramp in the lower leg. It turned out I was in need of a blood transfusion. I still take an iron tablet a day just to keep on top of it but the heavy feeling has gone and I rarely get cramp. I have only recently started to get tired but that might be more down to all the running around I do at work. I think the Pertuzumab can cause tiredness so I try to have a diet that will give some energy such as juicing. Hope your mum feels better soon .

fergal_jay
Member

Re: Pertuzumab

Yeah that's what mum is doing, she doesn't drive so she walks a mile or so a day as she isn't working so wants to stay active. I think it's something that's annoying but out of everything not the worst se.it doesn't stop her doing too much
Chocolates
Member

Re: Pertuzumab

Fergal, mine are building up too. I've been on this combo since dec 13 and I'm beginning to feel more and more tired. I tend to battle through it but I think there will come a time when I will need more rest than I'm currently getting. I find it difficult to sleep and wake early despite the tiredness. Have tried sleeping pills but they make me drowsy the next day and I'm still working so can't take. Maybe it's time to take them at the weekend so I feel more rested in the week. Difficult one this as in terms of se tiredness is the one I would want most if I had a choice. So therefore just going with the flow. xxx
LemonDrizzle
Member

Re: Pertuzumab

Fergal, that's sums me up perfectly. According to onc they are side effects and it means I'm having to try to take ill health retirement as there's no way I could work with the fatigue, heavy/tired legs and joint pains. I just try to do what I can when I can x
dennymac
Member

Re: Pertuzumab

Hey! That's me just had my 4th chemo plus perjeta and herceptin and just after my last dose I started to feel a real lack of energy... My ankles and legs have started to swell a bit and I get really sore legs just walking on a straight path (for 5 mins). I've been told by my team this is standard - the heavy and tired legs is let of it. Keep an eye and if u feel it's too much just contact the team as there could be other things at play.. Maybe bloods are low as that can also cause these symptoms xxx
fergal_jay
Member

Re: Pertuzumab

Hi all.in need of some advice, mum says she feels so tired all the time, it eases off slightly during the 3 weeks between treatments then she has a treatment and back to square 1. Obviously of all the side effects you can get this isn't the worst I'm sure but just wondering if anyone else gets this, she says her legs always feel heavy so I think a lack of energy. Anyone tried anything to help with this?? Thanks

Hope your all doing well xx
elliedog
Member

Re: Pertuzumab

Hi fergal jay
Thanks for thinking of me, we all know that feeling when going for scans and waiting for results. The scan itself was very quick but the waiting around for the scan was very lengthy as usual. Would love the onc to ring with results but I know I will have to wait for my appointment as its the hospitals policy not to discuss results over the phone. Hope your enjoying the lovely weather it makes such a difference to have some sunshine.
All the best x
fergal_jay
Member

Re: Pertuzumab

Hi elliedog hope all went well at scan yesterday, was thinking of you x
elliedog
Member

Re: Pertuzumab

Well it looks like I've got to have a ct scan before they will do my reconstruction. I haven't had a scan for 18 months as onc likes to monitor me through my various blood tests and examinations. So next Thursday its the scan and then ten days later appointment with my onc then five days later appointment with the plastic surgeon. So hoping my liver is behaving and the rest of the body. Onc says he has no concerns but plastic surgeon wants to know if the liver is healthy enough for me to with stand an operation. So its been some time since I've had scan panic and part of me wishes I hadn't started all this and I wouldn't be feeling in a panic now. So heres hoping the Pertuzumab and Herceptin are still doing their job. On a positive note my mamagram came back clear. Have a good easter everyone.
Daisy1975
Member

Re: Pertuzumab

 
fergal_jay
Member

Re: Pertuzumab

It's nerve wracking denny but I hope for positive news 🙂 yes lemon it doesn't seem long ago at all, actually it was only November when she was diagnosed but with a good first scan under our belts we are hoping for continued good times ahead. Luckily mum only struggles with being a bit tired no signs of other SE other than a bit of itching now and again. I'm so glad she's doing well I really hope this drug can give us all more hope as we continue on
dennymac
Member

Re: Pertuzumab

Got my letter through for my half way CT!! Ahhhh nerves!
LemonDrizzle
Member

Re: Pertuzumab

Fergal, it doesn't seem that long since your mum started her treatment - hope it's gone as fast for you and your family.
LD x
fergal_jay
Member

Re: Pertuzumab

Well it's mums 6th treatment monday which means the dreaded scan time and wait for results soon 😕
fergal_jay
Member

Re: Pertuzumab

Hope all is going well with scans and treatment xx
elliedog
Member

Re: Pertuzumab

I've been on it 2 years in May dennymac and so far so good. I'm with you I've got 2 boys to finish bringing up,16 and 11 years,so I don't plan on going any where yet xx
dennymac
Member

Re: Pertuzumab

Thanks ellie! It's great to hear of this! I'm due my third dose soon then will get a CT to track progress.. Feeling lump shrinking but hope it continues to! I'm really hope it works for a long time, being 32 I have too much left I havnt done yet xx
elliedog
Member

Re: Pertuzumab

Hi Ladies. Good to see everyone doing ok at the moment. I went for 3 monthly review yesterday with the nurse practitioner before my treatment. All bloods (in her words) were very good. Heart beat was very good and she always gives me an examination which went well.One of my many questions that I ask was will i come of the Pertuzumab in the near future.She said that they would only want to take me of it if I wasn't coping with the side effects or it was damaging my body in some way.The reason for this is because the data that is coming out about this combo is so good that as long as it is still working they don,t want to upset the way in which the two drugs work together. So I took all that as fantastic news as at the moment the only side effect I have is the itching which I think will continue to carm down. By the way my nurse practitioner mights as well be a doctor because she has so much knowledge and the fact that she offered the information about the data is good because she has never given out false hope and has also been truthful in a nice way.So ladies here's to us being with the long term survivors 10,15,20 etc years down the line. Enjoy the day ladies X

fergal_jay
Member

Re: Pertuzumab

Hi nicki, she's good at the moment thankyou, trying to keep positive after good news at last scan. Treatment again tomorrow so just keep going haha
nicky08
Community Champion

Re: Pertuzumab

Hi

I had my 10th (I think!) treatment on Friday and have managed to get the nurses to shave even a bit more time off my treatment time which is much better.  I can't beleive our hospital was still observing a 90 minute treatment time for Herceptin seeing as the drug has been used for well over 10 years now and so many other hosptials seem to give it over a quicker time, well until the subcutaneous one came in.

Itching seems to have got a bit better but I'm wondering if it will flare up again as I've just had this dose.  Or see if its anything to do with denosumab which is due in a couple of weeks?  We will see.

Hope your Mum is doing OK fergal jay, and also everyone else.

Take care

Nicky x

elliedog
Member

Re: Pertuzumab

Hi everyone. Got a busy week ahead.Treatment on Tuesday yearly mamogram on Wednesday (although I no longer see the point in mamograms) and appointment with reconstruction surgeon on Friday.Still using the hydromol cream. Still itching but if I put the cream on just before I go to bed it seems to stop the itching at night which gives me a good nights sleep.Also it works almost instantly when I feel the itching coming and I put it on. I've also caught a cold which is making me feel a little crappy but its my first cold since I finished chemo 17 months ago so I suppose I've done well. I bought some vitamin C tablets hoping it would help with colds etc. Does anyone else take vit C? I also take evening primrose and vit D3 for bones. Hope your well and getting on top of the Pertuzumab itch.Enjoy whats left of the weekend X

fergal_jay
Member

Re: Pertuzumab

Hi guys, so how's everyone doing??
geordiex
Member

Re: Pertuzumab

Join the club xxx

elliedog
Member

Re: Pertuzumab

Thanks geordiex. I think I am getting impatient in my old age.xx
Chocolates
Member

Re: Pertuzumab

Ladies, went to the Dr this morning - has presribed me some cream for eczema plus an anti histamine to hopefully settle the itching down. Spoke about my tummy upsets - she's referred me on as she said there is a lot of talk at the moment about perjeta and long term use and tummy upsets. Hopefully appt will come through soon for a specialist. Only thing is I really, really don't won't any tests etc - I know I've coped with a lot worse but the thought of this one - is the embarrassment is a bit too much for me. Oh well I'll see what happens. I'll let you know how I get on with the cream for my arm.

Huge hugs,
Hxx
geordiex
Member

Re: Pertuzumab

Elliedog you have to use it morning and night it took mine a week or two to go and mine was really bad xx

elliedog
Member

Re: Pertuzumab

Hi Ladies. I'm told by my onc that the Pertuzumab can give you diarrhoea or constipation. I usually go just after breakfast and it is usually very loose and when I have to go I have to go. However in the early days when I started taking Pertuzumab I would go to the toilet 2 or 3 times a day which just isn't like me. But things have carmed down now.As for the sickness I can feel a little sick after I've been to the toilet but then I have something to eat and I feel ok (weird I know).
I used the itching cream last night and so far it hasn't really worked but I am going to keep trying.Have a good weekend ladies x
Chocolates
Member

Re: Pertuzumab

Ladies, it's nice to know I'm not the only one but worried about taking Imodium as I don't want the reverse effects. This is beginning to impact on my work. Can't leave home till I've been and then worried all day. Oh well I'll see what the Dr says. Thanks everyone xxx
LemonDrizzle
Member

Re: Pertuzumab

Me too, more noticeable for last 5 weeks. Thought it was a bug then convinced myself it must be something more sinister. Nothing showed on scan ( not sure if it would though) so not mentioning it. Sure I must have been an ostrich in a previous life! x
dennymac
Member

Re: Pertuzumab

Hey! I've had an upset tummy also! Not diarrhoea as such but a definite urgency and when I need to go I need to go! Ask the doc for something to help, I have a stock of Imodium just in case!! Xx
Chocolates
Member

Re: Pertuzumab

Thanks Nicky - no I'm just her+ so just h and p for me. I've been on it for 24 cycles now and it's the last two that I've had the problem. Also seeing onc in March so if no joy from the Dr will have to mention to the onc. However, I'm so reluctant as I just do not think I can cope with any investigations in that area. That's just a bit too far for me. xx
nicky08
Community Champion

Re: Pertuzumab

Hi chocolates
I have been suffering a bit over the past week or two with diarrhoea but have put it down to a different batch/manufacturer of the letrozole I'm also taking as I'm ER+ Are you taking any hormone tablets and if so have you started a different brand in the last few weeks? Just a thought. If not I hope you get some answers tomorrow for your questions.
Take care
Nicky x

Chocolates
Member

Re: Pertuzumab

Ladies, has anyone developed an upset tummy on this. I haven't been right now for about 4 weeks. I know it is a se and probably is cummerlative (? Sorry just had a complete word block but you know what I mean) so is going to get worse rather than better. Going to mention it to Dr tomorrow but anyone take anything for this. I haven't got the runs - still regular but very very loose all the time. Sorry ladies but I need some advice I feel and wondered if anyone could help.
Huge hugs xx
geordiex
Member

Re: Pertuzumab

Hi you can use the ointment for washing too although I use the bodywash/bath xx

LemonDrizzle
Member

Re: Pertuzumab

Good luck Elliedog, hope it works. Let us know how you get on with it. I'm hoping that I can get some prescribed tomorrow, thanks geordiex
LD x
Chocolates
Member

Re: Pertuzumab

Elliedog, let me know how you get on. I have an itchy forearm - it drives me mad. Onc said its cleaning products but I wear gloves and how bizarre it's on one arm. Have appt with Dr Saturday so will be interested to know how you get on.
Huge hugs everyone,
Hxxx
geordiex
Member

Re: Pertuzumab

Your welcome hope you have some success xx

elliedog
Member

Re: Pertuzumab

Hi ladies. Bought my Hydromol cream today, just starting to itch so time to give it a go.
Nicky I use No.7 eye lash serum which help to thicken the lashes. My eye brows still haven't grown back fully(although always had thin eye brows) but the lash serum helped to stop me losing them fully.Have a good evening ladies and thanks again to geordiex x
LemonDrizzle
Member

Re: Pertuzumab

Good morning. This itching's really strange as its not everywhere. It affects my upper arm and back mainly but sometimes my stomach. I didn't realise that others have it too so it's nice to be reassured that it's not just me.
Nicky, my eyebrows and eyelashes are very slow to grow back and even when I try to use mascara they are so thin and short that I feel it's really not worth bothering! My eyes are very sensitive too so make up just irritates them. My hair seemed to have a bit of a growth spurt a few months ago but overall it's very slow growing. I had my last chemo late May and i had it trimmed last week at the back to get rid of the straggly bits, nowhere near ready for anything else yet.
Having treatment tomorrow so I'm going to ask about the itching and see if the doctor can prescribe something, if not I'll see gp.
Happy itching ladies!!
LD x
nicky08
Community Champion

Re: Pertuzumab

Hi ladies
Firstly LD that's great to hear about the shrinkage, however small that might be it matters and sounds like the treatment is still doing a great job. Long may it continue for you, and the rest of us 🙂
Secondly, the itching! I have noticed I itch on the top of one arm but only seem to notice it in the evening, how strange. And also I do now have a fairly spotty back (yuk) which I've never had before being lucky to not have had acne or the like when I was younger. It's interesting to hear about the creams etc so maybe I will give them a go or get my GP to prescribe something. I do know that a few years ago when I had a reaction to a moisturiser that I used over the counter Euricin (sp?) cream and that really helped stopped me itching my legs.
Hope everyone is doing well and coping with any of these side effects or others. The only other follow on from the chemo, which I finished about 2 months ago, is that my eyebrows and now my lashes have decided to thin out, or nearly disappear in the case of my brows! All happening a long time after chemo finished when they had all hung on really well. Anyone else had this or used anything to help them grow back? My head hair is growing back nicely albeit a bit too grey for my liking at the moment so it seems odd that other hair is still thinning but it could be the hairs that don't fall out that often normally are affected a bit later?
Take care
Nicky x

geordiex
Member

Re: Pertuzumab

geordiex
Member
geordiex
Member

Re: Pertuzumab

antihistames just dried my sinuses up terrible you buy the hydromol online I would highly reccomend it it ,my back chest and arms looked horrendous good luck xx

LemonDrizzle
Member

Re: Pertuzumab

Glad to see someone else itches too, well not glad but you know what I mean. I assumed it was just me as I have to have Piriton before my infusion, but it drives me mad especially where I've broken the skin. I've tried antihistamines and creams but nothing has worked so far but will ask gp about the ointment you suggest geordiex.
LD x
elliedog
Member

Re: Pertuzumab

Thanks geordiex.I think I'll pop and ask at the chemist tommorrow instead of waiting days for a doc appointment. I'll give it a go. Did it solve your itching completly? Good to hear from you hope your doing well xx