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Kadcyla

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Re: Kadcyla

Hi my name is Kate and I never thought six years ago when I was given the all clear from breast cancer agent two years of treatment after surgery
I would be posting here so that is how long my last post was
I was diagnosed with lung metastitsis in April this year I have had give taxatare which I didn't tolerate at all well even though it was half the dose I had nine years ago hence not having the sixth one my oncologist deemed it too dangerous for me
Along with taxatare I have had pentuzamab and herceptin the November 7th was told after full body scan that the last six months hadn't worked my tumour in my left lung had doubled and now it is in my sternum
Have been put on high doses of vit d for four weeks and start denosumab 5th December
For lung I start kadcyla next Monday
I am very encouraged by all your posts and it is so good to hear what really happens
We have no secondary breast cancer nurse st Kgh or a psychologist as her funding was cut Sharon was from Macmillan and asked me to write to Chief Exec
And say I had been discharged against my will
Feel I need to offload but certainly don't want to put family through any more stress has anyone any ideas
Everyone thinks I look good and act as if nothing is wrong as after chemo finished I felt back to "normal"
And have no physical symptoms but inside I am scared
Sorry to offload to all of you and wish you all the very best with your journeys xx
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Re: Kadcyla

Hi Nicky! Just wondered if you saw a tiny post in the independent today to say that Nice have provisionally said yes to pertusumab for advanced cancer. Just wonder what this may mean for you? Sue xx
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Re: Kadcyla

Dear Nicky, thanks for getting back so quickly. You may be luckier if your onc has managed to get you H/P again. I know I spoke to someone at the Marsden who said that there was a case of someone having RFA on their liver and after some wrangling was able to carry on, on kadycla. I just wonder if some hospitals handle things differently. Hope things work out for you. I will watch out for your posts. Sue xxx
Community Champion

Re: Kadcyla

Hi Sue (I remember your log in name well!)

That is very interesting and I'm just wondering if something similar may happen to me as we (well, my onc) has obviously flagged up my change of treatment to the CDF as he has requested I move on to Kadcyla. He had actually prescribed it as well, just ahead of my appointment with him last Thursday but changed the prescription once we had discussed the next steps ie biopsy and/or surgery. I had H and P last Friday, as I have been having, but not sure what will happen next. I have not had my appointment for The Marsden yet although it has been requested by my onc. I have had a second opinion there on two previous occasions to check/confirm that the treatment I am on is the right way forward so I am familiar with seeing Prof J there but get my treatment locally. I shall bear in mind what you have said and see whether your scenario is mentioned when I have my appointment or whether I'm told by my onc that I can't  continue with H and P now I've had some progression (I know the only case for staying on it is if it has progressed to the brain from what I've previously been told). According to the last scan all bone mets are stable and healing and as far as I can tell from the very brief report on the last CT all other liver mets have gone, it's just one that has increased in size rather than a new met. If I have surgery to remove it it would be a similar situation to yours where you had breast surgery to remove the lumps.

I will update on here once I know what's going on but wish you all the best with Kadcyla and you don't get the side effects that are reported on here. A lady I know who has had it for about 2 years now doesn't seem to get anything other than tiredness for about 24 hours after the infusion, something I had hoped for once I'm on it, but now not so sure from what others have written here. As with you I would also be frustrated that a treatment option is used when an existing one, plus maybe surgery, would be as effective.

Take care

Nicky xx 

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Re: Kadcyla

Hi reading back I should say the 2 areas in my breast were cancer. 2 different types. Also the CDF were going to write to the Marsden that's what my hospital has said. Sue xx
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Re: Kadcyla

Hi Nicky. My name is Sue and I have found it very interesting reading what is happening to you with regards to herceptin/pertusumab and kadycla. Sorry to hear that you have a new liver met. Hopefully your team will deal with it for you.

I would just like to tell you a little about my experiences with these 2 drugs. I had been taking herceptin/perjeta since May 2013 for her2 Er positive bone mets. Dropping taxotere n Oct 2013. I also had denosumab and tamoxifen. I had been doing well on these until April this year when a mammogram picked up some areas of suspicion in the left breast. I never had surgery, which I now regret. There were 2 small areas. I still don't think it is completely clear if they were new areas or regrowth in old areas. This mammogram led to biopsies and a CT scan and a bone scan. These came back as still being 'clear' or stable. It was then decided that I could have a mastectomy with the support of my hospital. I had this at the beginning of September. The results were as good as could be. The areas hadn't grown since April, my lymph nodes were clear there were clear margins. The receptors hadn't changed either. I have recovered from the surgery quickly. The issue has been what treatment I should have! . I did decide to ask for a second opinion again at the Royal Marsden where I had gone in May 2013. I am treated at another hospital but was recommended the pertusumab in 2013. The view at the Marsden was that as my breast had been dealt with and the rest of me seemed fine I should carry on the H/P. It wasn't time to move on yet. I asked whether there would be an issue with funding. The Marsden thought not. I was happy at this. I then contacted my hospital and relayed the message. Sadly following several meetings with my hospital it seems that there was an issue with funding. Apparently the CDF is very strict about any progression and that is what I was deemed to have had. There was really no choice but to move onto kadycla. I still feel confused about this. I know that my hospital are concerned that these new areas indicate that the H/P isn't working as well so I should move on! I have spoken to the Marsden and apparently as it all comes from the CDF I couldn't carry on getting the H/P at the Marsden. I do know that as soon as my mastectomy was over and I went for the results I was handed the recommendations from the MDT to say the H/P was being put on hold. It will be interesting to hear what happens to you with regard to the funding. Do you get the pertusumab through the CDF?. I will probably never know whether my hospital reported too soon to the CDF about what had happened to me. I felt very stressed and down about this for weeks. I have now had one kadycla and have changed on my request, to zoladex and letrozole. I was always surprised that no one ever mentioned that I had failed tamoxifen. When I got my irratic periods my left breast would hurt which apparently wasn't relevant. I have gradually come to accept the change of treatments and I don't feel that bad on them. It is just a shame I have used up a treatment when I could have had a bit longer on the H/P.
I will be interested to hear if you can continue on the H/P. I hope the biopsy isn't too bad. Wishing you all the best. I would say it is hard knowing what is the best thing to do. I can see both points of view to be honest.

Sue xxx
Community Champion

Re: Kadcyla

Hi Kadcyla ladies.

As Julia and Helen both know I didn't start this drug regime yesterday, as had been planned, as I am having further investigations into why one liver lesion has grown whilst everything e,se is either stable or gone. I will be having a liver biopsy done, hopefully before my next treatment cycle (of H and P) in 3 weeks time. One reason for this is that I know if I go on to Kadcyla and it's not the right treatment I can't go back onto H and P or if I had to change to another treatment I couldn't then have Kadcyla in the future. A tricky decision but one I think I need to take. All my blood results were absolutely fine, no raised liver function results, so that has helped with my decision plus the oncologist is now saying surgery could be an option as the liver lesion is isolated in the right lobe. None of this will be easy to decide upon but I feel I have discussed most options now, as well as waiting to have a second opinion at The Marsden, so can get things sorted and know which treatment plan is best. Not looking forward to the biopsy though! Despite having a local anaesthetic it still was very uncomfortable and at times painful when I had the last one done 😬

Nicky x

Member

Re: Kadcyla

Hi helen

l've heard good things about Kadcyla results. please give my love to Nicky too. I'm doing fine thank you. I hope the cycles of Kadcyla get easier for you.  Sending you gentle hugs.

 

julia xx 

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Re: Kadcyla

Hi Julia

Thank you for your kind message. I had round 2 of Kadcyla yesterday, feeling pretty tired today, working at home though. Round 1 started with fatigue, aches & pains etc but by the end of the 3 weeks, I was feeling ok & psyching myself up for round 2.

Am in contact with Nicky so we are comparing notes!

I hope that you are doing well at the moment and look forward to seeing you again sometime soon.

Love Helen x

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Re: Kadcyla

Hi Helen44 and Nicky08 (two great ladies) 

 

Ive not been on here for a couple of weeks I was so sorry to see your both off the H&P and having Kadcyla, Helen I hope your feeling better and Nicky08 I hope all is going good for you.

 

you both looked amazingly well when I met up with you last month, I'm sorry this has happened, as Helen you said it is scary how things can change so quickly.  I hope we can manage to meet up again once your both feeling better.  I'm sending you both hugs and well wishes.

 

Love julia xx 

 

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Re: Kadcyla

 

 

Member

Re: Kadcyla

Hi & thank you for all your very informative replies everyone,
I am absolutely exhausted :-( at the moment - no nausea but ache everywhere and really tired. So hope that it won't be like this every cycle! It seems that you lovely ladies who are on it are tolerating it pretty well which is really good.
Nicky, I am so sorry that you're joining me, when we met up last month we both seemed ok, it's scary how things change so quickly with this disease.
Lots of hugs to you all, best of luck with your treatments, Helen x
Member

Re: Kadcyla

Hi everyone and especially Helen,

ive been on Kadcyla since February this year after new spread to my peritoneum and possibly ovaries. The peritoneum has been described as the 'apron of fat' that covers your abdominal organs - delightful! I've been on herceptin for 9 years and had various localised treatments to my liver, which is now clear.

ive found it a little bit tougher than I had been led to expect, nothing 'medical', but nausea and fatigue. But I'm also getting 'anticipatory nausea' when I go into the hospital for treatment, so maybe it's all in my head! I've got some stronger anti-emetics and a mild tranquilliser that I take before I set off which are taking the edge off it. I'm still working, so now I take the day off after treatment and lie-in late, get up slowly and treat myself gently. The nausea/fatigue come and go for the rest of the week but I can go out and about, and keeping busy takes my mind off it.

At my first scan there was definite shrinkage. At the second everything was the same so the docs were happy that things are steady, but I felt disappointed cos I want it all to go away!

one new side effect is that my muscles and tendons get very stiff after the most gentle exercise (e.g. A stroll in the woods). When I get up from sitting down I feel like I ran a marathon the day before, and have to limber up in order to walk normally. This has led to some minor damage e.g.tendonitis of my Achilles as well as funny looks when I'm in a restaurant and get up to walk to the loo!

So generally the side effects are minor and bearable. I hope you (Helen and Nicky, I think) found your first treatment not too bad, and that it works wonders for you all

Jx

Community Champion

Re: Kadcyla

Hi Nicky 

Sorry to see you have had progression it does hit you hard as it did me a few weeks ago. But Kadcyla is a good drug I remember when N.I.C.E was debating whether they were going to fund it because of the expense thank goodness the petions worked.

I do hope this treatment works well for you and the other ladies Good Luck

love and (((hugs)))

Community Champion

Re: Kadcyla

Hi Carolyn and thank you for your kind words - as ever. I know of a few ladies on this drug and Dawn being one of them.  If I remeber correctly it was affecting her blood counts a while back although other ladies on it seem to not have too much of a problem with them.

Hi AnnieMac13.  It's good to hear you are tolerating this regime well. Scan time is so full of anxiety (scanxiety!) and  we all know how you must be feeling especially as this will be the first one since your secondary dx.  Feel free to join in any thread, the Bone Mets one is always busy and used by many mets ladies even if they havent got bone mets.  The older Liver Mets threads seem to have gone quiet recently and therefore slipped too far down the pages to see them easily.  However there are quite a few of us ladies with liver mets so you are definitely nit on your own.

Fingers crossed for your results and let us know how you got on - that's if you want to - I find having to tell anyone my results more stressful than getting them (almost!)

Nicky x

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Re: Kadcyla

Hi Helen, I'm sitting reading this whilst I have my 3rd dose of Kadcyla. I developed a liver met in July after originally being diagnosed with breast cancer Jun 2014. I have a CT scan tomorro and see my onc on thurs for results, a scary few days. I have felt OK on it, much easier than trad chemo. Mild nausea and tiredness the first few days. Would love to be like some of the other ladies I have read about who are doing well on the drug. Hope it goes smoothly for u and u r pleased by lack of side wffects
Community Champion

Re: Kadcyla

Nicky ..so sorry your h and p regime isn't working too well but hoping kadcyla works its magic for you for a long time.
I think dawn has been on it for a long time if I remember correctly .
Hugs xxxx
Community Champion

Re: Kadcyla

Hi Julie, and any other Kadcyla ladies.

Im joining my good friend Helen on this new drug as I've had slight progression in my liver as well. This is after  over 2 years on Herceptin and Pertuzamab. I had of course hoped this combination would have kept me stable, or better, for longer but it is what it is. Luckily Kadcyla seems to be well tolerated so it's good to have an update from you Julie and long may it keep working for you. I already chat to another lady on my chemo ward as we both have treatment on the same day and time and she has been on it for about 18 months and is doing very well, just a bit of fatigue the day after the infusion.

Finger crossed for us all.

Nicky x

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Re: Kadcyla

Hi Helen

I have been on Kadcyla for over 2 1/2 years now.....more than 45 doses so far!

I have not really had any side effects worth mentioning (tiredness, weak nails, vision a little blurry - all minor)

It has never affected my blood count.

 

It is given via I.V. infusion, so a trip to the hospital every 3 weeks and as the drug is so expensive the chemo ward have to wait until I am physically in the hospital before it can be requested from pharmacy.

I go the day before to my G.P. for bloods which are faxed direct to ward.

The first dose is given over a longer period and you have to stay in the hospital for a couple of hours to ensure no allergic reation. Subsequent doses are given over 30 mins, although due to wait for the drug being dispensed I am usually on the day ward for a couple of hours each time. 

I don't mind the wait, am just so glad to get the drug.

 

I have secondaries in my bones and liver, although my liver has been tumour free after the first 3 months on Kadcyla and my bones are healing - I have Denosumab injection 6 weekly.

For me, this drug has been fantastic and I live a pretty normal life

I am 53 now and have been living with cancer for 7 years.

 

Good luck with your treatment, 

 

Julie x

Community Champion

Re: Kadcyla

Hi Helen,

 

good luck for this one?

 

Moijanxx