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Chemo treatment for HER2 positive

29 REPLIES 29
Hardish
Member

Re: Chemo treatment for HER2 positive

Hello. Like yourself I was not badly effected by the EC chemo, and found I was able to pretty much carry on as normal after the first week. but since starting Pertuzumab, Docetaxel and Herceptin treatments I have been badly effected with nausea and sickness, even though I have been given stronger anti nausea tablets, causing me to have no appetite. This starts around day 3 after chemo and goes on until day 10-11, albeit sore and dry mouth stays. I have found that I have painful bones and muscles, again this starts around day 3-4 and lasts until day 8-9. The fatigue is also the worst at this time. But the treatment effects everyone differently and I hope you are not as effected as I. One more to go for me..... good luck

Chloe63
Member

Re: Chemo treatment for HER2 positive

Hi Jules

Just reading your post, sorry what you have been going through. 

I always worry about the cannula as it can vary so much, depending on your veins and the nurse doing it.... 

I know that being really well hydrated helps make the veins fuller ( I had a blood test one day without expecting to and had really thin veins, she had to put the needle in twice and it really hurt - and left a bruise for ages- this was all down to dehydration ) I drink loads the day before ( at least 2 litres ) and on the morning - though not water that is too cold as it can make your veins smaller. Then keeping warm, layers... and very effective last time, when I was waiting in the chair for the nurse to come and do the cannulation, I was sort of pushing myself up off the chair a bit, very subtly, like in the gym ...just to make my veins bulge. I am pretty sure this made a difference, the veins were much fuller and cannulation was easier..... just a thought. I hope it all goes really well for you next time. 

Chloe 

Jaybro
Member

Re: Chemo treatment for HER2 positive

Hi Jules

 

My GP prescribed Gabapentin for neuropathic pain (I had it in my breast muscle, having had my mastectomy and axillary clearance first, completed chemo and being at the radiotherapy stage, which put a bit of additional stress on it) and it’s been a wonder. I started on a child’s dose (being prone to side effects just walking into a pharmacy) and felt an immediate effect, so I’m now on an adult low dose. The additional benefit was a huge boost in my mood, morale and energy which means I don’t want to stop taking it! What it doesn’t do is affect the tingling and numbness of PN unfortunately. That just has to be tolerated till it eases off, it seems. Unless anyone here knows something no-one’s mentioned to me? Hoping so.

 

Good luck with the rest of your treatment. We all respond differently and some lucky people sail through barely touched by side effects. But a significant number of people do suffer badly - and usually there is a simplish solution if you report and ask for help. Tbh, looking back, I’d say the first five months of this year have been a write-off but the oncologists say I’ve been unlucky and, after all, it’s all in a good cause.

 

As regards your family, there should be support available for them too. After I’d been through chemo and radiotherapy, on the very last day I learnt I was entitled to all sorts of things no one ever mentioned (I had surgery at a different hospital), as was ‘my carer.’ A bit late but I don’t think I could have benefited earlier!

Spicey
Member

Re: Chemo treatment for HER2 positive

Hi Jules

 

Yes thanks only had Herceptin for second treatment seeing the main Oncologist next time been asked to have Zoledronic acid injection?  I have nearly lost all my hair not eyebrows or eyelashes yet!  I have problems with blood tests/cannula also.   I do hope you are feeling ok after your treatment take care. xx

jules81
Member

Re: Chemo treatment for HER2 positive

Hi Spicey, hope all went ok with your oncologist and treatment ? I was back in thurs /fri , it gets more draining each time I’m finding ! Had two cannula fails this time so arm is really bruised and sore. 

Is anyone finding they feel more and more drained each time ? 

Im glad you’ve got the make-up course etc booked in and you found the head scarf session too ! 

Have you lost any eyebrows or eyelashes yet? 

Im feeling the effects on my family quite a bit this time 🙁 

Hope everyone is ok xx

Spicey
Member

Re: Chemo treatment for HER2 positive

Hi Jules

 

Hope you are ok after your treatment on fri? I was bad for the first 10 days and fine after that got my second treatment on 12th and appt with Oncology nurse first on 11th so going to discuss side effects from Herceptin I think.  Surprised I havent had a heart scan before second treatment.  Starting to lose my hair now but all prepared with wig caps scarves went to a workshop two lovely lady volunteers showed me how to tie the scarves etc made me feel better.talking to them as they had been through this.  Also got the make up workshop soon and a Bosom Pals meetup.  

jules81
Member

Re: Chemo treatment for HER2 positive

Hey, just seen this! So fed up with the side effects too this time, really dragged on. Feeling better this week, I hope you are too ?

I’m back in next fri but lots of app’s in between! There doesn’t seem enough time feeling better before the next round ! 

Spicey
Member

Re: Chemo treatment for HER2 positive

Thanks Jules feeling fed up with all the side effects and then hospital visits x2 with low sodium in blood not looking forward to next one how are you?

 

 

jules81
Member

Re: Chemo treatment for HER2 positive

Hope you are getting on ok Spicey x

jules81
Member

Re: Chemo treatment for HER2 positive

That’s great you’ve booked on, let’s hope we can make it! 

Yes the cold cap does add more time on, my last round I was really fed up with it and it hurt a lot this time, I feel like I should keep going with it as half way but it’s really not pleasant. 

Fingertips are getting worse so will mention it when I’m next in. 

Can I ask how many days you feel the worst with the side effects? Mines usually 7-10 days, wearing me down this time. The days are dragging. 

Hope u are all ok xxx

Spicey
Member

Re: Chemo treatment for HER2 positive

Thanx so much Chick treatment ok but awful side effects x

 

Spicey
Member

Re: Chemo treatment for HER2 positive

Hi Jules

I decided not to use cold cap on the day I have had alot of side effects from treatment seems like one thing after another hope your ok after your third treatment. x

Mini
Member

Re: Chemo treatment for HER2 positive

Hi, have you been in touch with the oncology unit about your sore fingertips as they might suggest some pain relief.  I decided not to do the cold cap in the end, they told me I would be in the chair twice as long and I had heard it was painful so I felt like I was going through enough but I can totally understand why some try it.

I’m booked in to LGFB in July so I’m hoping I’ll be well enough to go, it’ll give us a confidence boost 😊 Take care xx

jules81
Member

Re: Chemo treatment for HER2 positive

Started to get this a lot esp end of cycle two and now on three is worse! Did anything help with it ! My fingertips are sore too x

jules81
Member

Re: Chemo treatment for HER2 positive

It definitely takes a long time to get over it ! Find I have less than a week back to normal then back to it 🙁

yes fligrastim makes me get stomach cramps etc too esp at night. 

Lets hope we get through this bit quickly. 

Hope you start to feel better soon. 

That sounds like a good idea to join a support group, I joined one last week! 

Have you got look good feel better sessions ? I’m trying one soon. 

Are you using the cold cap ? I can’t remember xx

Mini
Member

Re: Chemo treatment for HER2 positive

I had cycle 3 last Friday and still worn out, this week it’s like I’ve had flu and I agree with you about Filgrastim-I also get really bad stomach cramps with it.  I’m hoping to go to our local breast cancer support group next week as I haven’t been so far and I think it’ll help me, to talk to others who’ve been there or going through it.  Still not sure whether to have reconstruction either. Take care xx

jules81
Member

Re: Chemo treatment for HER2 positive

I also find the sickness gets worse. I will also be having my op after chemo finishes. Hope you are doing ok x

jules81
Member

Re: Chemo treatment for HER2 positive

Hi Spicey and Mini, I was also diagnosed with Her-2 positive breast cancer, I had my 3rd round of Chemo yesterday ! Carboplatin, Herceptin, docetaxel and pertuzumab so similar to you. I hope your treatment went ok spicey!? I’ve used the cold cap and am losing hair but just a bald patch on the top of my scalp so have kept some hair but it has thinned, found it hard to wear yesterday. 

Have experienced lots of side effects from the treatments. I find the Filgrastim injections so nasty does anyone else ? X

Chick1
Member

Re: Chemo treatment for HER2 positive

Hello Spicey, Best wishes with your first treatment. You may have already had it, if so then I hope it went as well as possible. I would have given your post a hug, but I am having site issues again this evening. So here's the alternative 🤗 🤗 🤗 🤗 🤗 🤗 🤗 🤗 🤗 🤗 Wishing you all the best, Chick 🐥 x
Spicey
Member

Re: Chemo treatment for HER2 positive

HER2+ also first treatment this week Docetaxel Carboplatin and Herceptin already had a lumpectomy going to try the cold cap but unsure.  I also find this forum with tips etc so useful thanxx 

Mini
Member

Re: Chemo treatment for HER2 positive

Thanks everyone for sharing your experiences, this has really helped me and the useful things that I might be able to do if I have any particular side effects. Chemo is the necessary evil that we need to go through to survive and I’ll be relieved when I get through it, hopefully by the end of the summer. Take care xxx

Hannahlizzy21
Member

Re: Chemo treatment for HER2 positive

I am on TCHP regime, and coming up for round 3/6. I have found that I feel very sickly and nauseated around day 4/5. I am always ok the first few days.

But everyone reacts differently to chemo, and my lump is shrinking (even after 2). So you can’t really ask for more than that! I’m having my op after chemo, and I’m hoping for the same response as the ladies below.

Good luck with your (not so pleasant) journey x

Chick1
Member

Re: Chemo treatment for HER2 positive

Hello Mini,

 

Wishing you, and all in the same boat, all the best with the chemo and targeted treatments.

 

 I was like Jay68, and had a complete pathological response according to the post surgery pathology report. I found the  effects of the Tax chemo built up over the course of treatment.  So at the end of them, I looked and felt my worst - but on the plus side  at least my hair started growing back when on it!  I learned after the first session that it was also useful to have prescribed codeine type pain killers to hand for the severe  pains that would usually kick in a couple of days after treatment. 

 

Like Blueash, I also used a anti histamine  although I used a generic product of the cetirizine hydrochloride type rather than the loratadine type.   I used it before a couple of Herceptin treatments after feeling like I had a cold after the first two or three injections.  I stopped it after two uses and was fine for the remainder.  I am also aware of people taking them to reduce the side effects of the GCSF type  injection (the one to stimulate white blood cells usually when on Tax chemo).  I did not get a chance to test this out as I had one of these and then refused all others.  Thankfully my neutrophils remained at relatively normal levels throughout - phew!!

 

I may be wrong but to the best of my knowledge,  the recommended dose for allergies etc, is usually one tablet (10 mg) per day.  I would be wary of taking two a day, as suggested below, unless these are of a  5mg dose or medical staff have advised 2 x 10 mg  per day.  I think people with kidney problems need to especially take care and seek medical advice.

Best wishes,

Chick x

Jay68
Community Champion

Re: Chemo treatment for HER2 positive

I'm not going to lie - the second lot of chemo with targetted therapies wasn't easy - but when I had the operation - in my case a right mx and total node clearance, to receive the news from my surgeon afterwards to say my pathological report showed all evidence of cancer had gone - the chemo and targetted therapies had done their job - I was cancer free!  That was all back in 2017!  Every bit of pain and discomfort had and continues to be worthwhile.   Good luck with your continuing treatments. x

 

blueash
Community Champion

Re: Chemo treatment for HER2 positive

The docetaxel was tiring and caused lots of water retention in me. Very often the Herceptin gives you mild flu and aches and pains, to avoid that take two claritin hay fever tablets a day. One in the morning and one in the evening.

 

This is why: http://myangrycancer.blogspot.com/2013/02/claritin-is-worth-its-weight-in-gold.html

 

Anxious-Soul
Member

Re: Chemo treatment for HER2 positive

Hi mini, you will get through the chemotherapy, the doctors and nurses don't want to hurt you so keep them informed of any side effects and they may consider reducing your dose or find alternative drugs. Do not suffer in silence. 

 

Some people use a bag of frozen peas to rest their feet on to reduce the chances of developing peripheral neuropathy in the feet. On my last 2 cycles I put my feet in a bowl of cold water, the nurses were very accommodating with this odd behaviour. Before doing this I could feel my feet tingle as the docetaxel went down to my feet. Vitamin B12 may also help the nerves repair.

 

You may be one of the lucky ones and sail through rather than have the scrapes, bumped and falls and feel totally knocked about. x

 

 

 

Alice53
Member

Re: Chemo treatment for HER2 positive

Hi Mini and Anxious   HER2+ as well,  herceptin, pertuzumab and docetaxol for cycle 1 but i reacted to two drugs ending up with a two night stay.  once home afterwards i had waves of fierce tingling right through my body just as described in the side effects leaflet.   Docetaxol has been changed to Abraxane now and i did cycle 2 over two days with no adverse reactions, what a blessing.  No way did i want to be ill like that again.  Good luck    Alice

Mini
Member

Re: Chemo treatment for HER2 positive

Hi, thanks for your message.  I do think that I’ve been lucky so far and the last half of chemo is perhaps going to be much harder xx

Anxious-Soul
Member

Re: Chemo treatment for HER2 positive

Hi mini,

 

My treatment was TCHP, I struggled with docetaxel big time, for me this drug knocked me out. My experience - watch out for peripheral neuropathy in your hands and feet with docetaxel. Take care.....X

Mini
Member

Chemo treatment for HER2 positive

Hi, I was diagnosed with HER2 positive bc in Feb of this year and I’ve had the first two of my chemo treatments of which I’ve to have eight in total, after these I am to have a mastectomy. The first four are EC and the last four TPH.  To be honest so far apart from sleeping for a week after chemo I’ve been fine and all I’ve had to deal with was the hair loss of which has nearly all gone on my head.  It’s just that I’m worried about chemo’s 5-8 the TPH (Pertuzumab, Docetaxel and Herceptin) and possible side affects.  How was anyone else’s experience with this? Thanks and love to all xx