My husband was diagnosed with stage 3 RCC 4 years ago, had a radical left nephrectomy and all was well for about a year, then scans showed lung nodules which whilst monitored remained stable for around a year/18 months, then scans showed tumour on right adrenal gland and a lymph node in the chest which were treated with radiotherapy and they remain stable however he now has further mets to his pancreas so we are about to start treatment next week and the above drugs are our consultants weapon of choice.
I’m just looking to get some shared experiences on this drug combo and any hints/tips for what to look out for.
we’re blessed really as 4 years in to this journey we’re doing well and my husband remains well with no real cancer symptoms. I’m just apprehensive that the treatment now that is meant to keep him with me and keep him well might actually make him sick when he’s never been sick through his cancer journey.
thank you all in advance.
Your final paragraph resonates very much with me. In the now 19 months since my radical right nephrectomy I’ve known that I have mets to my lungs but having recovered well from open surgery I’ve had a year or so where having Stage 4 RCC has caused me almost no inconvenience whatsoever. I am now in a similar situation to your husband (and really impressed that he’s been so well for four years). I too feel very well, although the CT scans say that those things that are growing, even though they’re not causing me any bother at the moment, cannot be left much longer. So I am due to start on an Axitinib and Avelumab combination any time soon, I’m just waiting for the letter to tell me when.
Since kidney cancer crashed into our lives I’ve done a fair amount of research into whatever drugs I might be put on when the time came, but I don’t think I’d ever heard of Pembrolizumab. Although as it’s a “mab” I’m sure that it’s an immunotherapy drug administered by intravenous infusions like the Avelumab that I’m being lined up for. The list of possible side effects is indeed daunting, but no one gets all of them and different people experience them to different degrees. Your husband has probably been thinking, as have I, why am I about to go on drug treatment that will almost definitely make me feel lousier than I do at the moment?!
All of which preamble leads up to me saying that I’m not able to answer your specific question. Actually I’ve never seen anyone here talk about Pembrolizumab; but in another recent thread you’ll see that several others are ahead of me on the Axitinib / Avelumab combo and I’m encouraged that they seem to be handling it well. I’m sure that Ax / Pemb wouldn’t be so different. Thing is, how long can we leave it until the metastases actually do cause trouble? And, if we do leave it, is there a point of no return? If our medical teams say now’s the time to hit those things with the drugs, then I think we kinda have to. In a sense we don’t have a lot of choice, do we?
Sorry I can’t be of more use, but great to meet you and huge best wishes to you and your husband, from someone at a somewhat similar stage in the journey.
Hey Mark, nice to hear from you. Sounds like you have so far had a similar journey to us. I’m sorry it’s happening to you and yours.
My husband had his 1st treatment yesterday and so far so good but it’s far far too early to expect to see or feel any differences good or bad the treatment may have. We remain positive and hope and pray he tolerates the treatment and that it works. We were told yesterday at The Christie in Manchester that the Ax/Pembro combo he is on is very new for RCC patients and that he’s one of the first to go on it since the relevant trial ended last year. They say it has seen great results however so that’s really encouraging!
I felt very encouraged and positive yesterday however today I’m feeling really anxious but that’s something I struggle with anyhow. My husband however is very calm and collected and just faces everything head on and has the best attitude to it all I guess, and if he does ever struggle he never lets on...which is another worry for me though!
You're right regards optimum time for treatment though, we just have to trust our experts that they absolutely know when is the right time, and also things are constantly evolving and improving...take this treatment for instance, we’re getting it now but it was only in trials recently so perhaps had we needed treatment a while back we couldn’t have accessed this one and it’s this one that is looking like our best shot right now...so everything for a reason- I’m a huge believer in that!
Thank you for taking the time to reach out, it’s nice to talk to others and I hope and pray that you beat this thing! Take care Mark.
Hi Coral Co5513,
Ha! I had my first treatment yesterday as well. A bit apprehensive as the new boy there but now I know how it all works next time will be a doddle. Took longer than I thought. Paracetamol, a half hour saline drip with Piriton, then an hour on the Avelumab infusion, and finally another half hour saline flush out. Next time I’ll take a book or a podcast if I’m not chatting with the person next to me.
Sent me home with the Axitinib tablets, plus precautionary nausea and diarrhoea medication, was that how it all went for your husband too? Felt really spacey during the Piriton phase but my head was clear again by home time, just quite tired. I’m taking my Axitinib at half eight evening and morning. The tablets are much smaller than I was expecting, thought they’d be like horse tranquillisers!
The Ax/Av combo that I’m on has only recently finished trials too and is not yet fully available but the drug company has made a certain amount available to the NHS until the spring; that’s what I was told anyway. Sounds very similar to your husband’s set up.
I had a wobbly day or two after finally getting the phone call with my appointment day and time. I thought I was ready, informed, fully mentally prepared, but then my body seemed to have its own reaction, which took me by surprise. Fully calm again now though. But, also, I know from personal experience how difficult it can be for the partner of the one who is ill, so I can empathise with you there. Hi to your husband,
I’m on Pazopanib but every time I have a scan the oncology nurse reminds me that there are other treatments available when it stops working. The last time, she told me that combination treatments are now recommended as second line treatment and sometimes first line. I’m interested in peoples’ experiences because chances are I will be offered this at some point.
im not on this particular combi but Nivolumab and Ipliliumab. My first infusion caused some liver problems as well as making me v. tired. Like many in this thread I was feeling well following my open nephrectomy.
then I was told of a nodule on my left lung which it was proposed to remove by keyhole. 2 days before the op I was told more Mets spotted on my spleen and right lung so no op but immunotherapy.
I am now on high dose steroids to hopefully resolve liver problems. I should find out next week what next stage is, but it is reassuring to know that there are alternatives.
I hope all works well for you
thank you for your input. Sorry you’re having problems with the treatment, hopefully the steroids are working to resolve this now for you?
hoping all is well with you x
Thank you for your input. I hope the treatment you are on is working well for you?
my husband had his 1st combined therapy a week ago now and so far he is tolerating the treatment really well although I guess it is still early days.
i will stay in touch on this thread to keep anyone who is interested informed.
wishing you all the best x
apologies for delay in response, how are things going for you?
Our first day of treatment was lots of hanging around but yes we hope future appointments will be better.
hubby seems to be tolerating the treatment really well, he’s had some tiredness but it’s hard to know if that’s the cancer treatment as he also has a heart condition that can cause this and they changed one of his heart meds at the same time as starting cancer treatment so .
He has the Pembrolizumab by infusion just with a saline drip no piriton so maybe it’s not needed for this drug. I take piriton tablets though for hay fever and piriton can make you drowsy and spacey in tablet form so if you had an infusion I’m not surprised you felt funny! Hubby was also given the meds in case of diarrhoea but so far that’s not been a problem!
hope you are staying strong and positive.
Happy to hear your husband’s started well on the new drugs.
To give you some idea of how my first nine days on the equivalent combo is going: I did a morning of paid gardening work today, went out with the dog this afternoon, and don’t even feel particularly tired this evening!
All the best,
I am very new to the Macmillan forums and wanted to find out about travel insurance whilst on treatment, but your post has some similarities to my husband and so I thought this may help you. He also had a radical left nephrectomy, in 2014, with no further treatment. A regular scan a year ago showed metastasis in his left lung, close to the main pulmonary artery, he was getting no symptoms and was fit and well. We spent the rest of the year being referred on to different specialists as the position of the tumour was too risky for surgery. During this time suspect spots appeared in the other lung and lymph nodes and a new lesion appeared in the pancreas. He is now under a specialist oncologist for treatment and has had four three week cycles of immunotherapy - Pembrolizumab 200ml and Axitinib 10mg combo. This is a very new treatment, but has been shown to have excellent results. My husband had a scan in early January to observe any changes and already there is significant shrinkage showing, which our oncologist anticipated.
Most of the time my husband has only suffered a slight hoarse voice, none of the other side effects. However he picked up a winter virus which brought him down a bit and he started getting other side effects, in particular diarrhoea. His specialist gave him a week's break from the treatment and during this time he got much better, so he had his Pembro infusion last week and is back on the Axitinib half dose which the specialist identified as the cause of the side effects. He did warn us from the start that it may take a while to regulate the dose where my husband feels comfortable. He;s now gone back on one day half dose one day full. I think this is where my husband will stay.
I hope this helps and reassures you, I realise that everyone will be different but the treatment has not laid him low except when he caught the winter virus on top. He has continued to work and we still have a busy social life, which includes eating out regularly.
I also realise the importance of keeping positive, of course the whole thing can be a shock and a constant worry, but we try not to worry overly about things which have not happened because they may never happen. We don't stop our lives for it but continue as normal as much as we can. We feel very fortunate that he is having this treatment.
Thank you for your input and I'm sorry that we have to meet due to this, however I am hoping that this forum will get me through as I do struggle from time to time.
Its good to speak to someone who is on the exact same combo as my husband as I accept that this is a very new therapy for RCC and with this combo.
My husband initially started out well with the treatment however last week (and the reason for me not having responded on here sooner) he started to feel really off. He says its not that he felt "ILL" as such more that he felt utterly lethargic and exhausted, really achy muscles all over and all his joints hurt too. He was not motivated to do anything at all, and it was really not nice to watch him like this. He also has started with lack of taste when eating and he says anything even remotely spicy, hot in temperature or even his sensodyne toothpaste is making his tongue feel on fire which he is also finding a nuisance - especially as he loves his cups of tea and his spicy food :) He also had a change in the colour of his stool (sorry not nice to discuss I know) it went from ordinary brown to a pale clay colour. It was at this point last week that I persuaded him to ring the hospital helpline to discuss what was going on - men are all too eager to just 'crack on and not make a fuss' arent they - but I have told him we're not the experts here and I cannot read my crystal ball to know what is going on with him and that you just can't mess about with this stuff!
Once he had spoken to the hospital they had him in the very next morning for some obs and blood tests all of which seem ok, and they feel that all his feelings/symptoms are simply side effects and his body adjusting to the treatment which he must continue with. However they suggested that maybe he could be deficient in Vitamin D so they have given him what I can only describe as weapons grade dose Vit D to take each week, to see if this helps with the exhaustion and the joint/muscle issue. After a few days he did start to feel better, in his words "about 70%" so yesterday we ventured out for a couple of hours, but may have over done things as today he is feeling pretty rubbish again - not as bad as last week but rubbish compared to yesterday and the day before,
Such a journey we are on here - and I know this is the same for everyone on here, and its only from speaking to each other and reading information on here that we can keep each other going - so I am very grateful for that.
So Friday this week he will take is next grenade of Vit D and then Monday next he will have his 2nd dose of Pembro and I just hope that he has a better time of it as he does get used to things and we learn to manage any side effects he does get. We're going to speak to this nurses to see if there's anything he can get for his mouth - I'm thinking like some kind of gel that might provide relief before eating etc but maybe I'm wishful thinking??
He is a difficult person to get to 'rest' or 'pace' as he simply doesn't get it, he's always amazed me with his strength and positivity and whilst he's not lost that, he is finding it hard to be slowed down and demotivated towards things he normally loves to do. I forgot to mention that in addition to the RCC beast we do battle with, he does have a serious heart condition that also has its own little warriors we have to battle. He's also always looking after me as I'm disabled and limited to what I am able to do but I'm going to have to try and step up a fair bit more me thinks to try and get through this.
I'm sorry if I'm rambling, its early days still I know but I can't believe the irony of the situation of having been diagnosed with cancer 4 years ago then changing status from Stage 3 to Stage 4 metastatic yet in all those 4 years he has never been ill with his cancer yet now he is having the treatment to maintain him and keep him here this is what is causing him to be unwell...you couldn't write it, except we just did lol!
We remain as positive as we can be, and hopeful that in time he will regain his energy and motivation and we can begin to live a bit more again, We realise that we are very blessed to be here and to have this treatment available to us.
Wishing everyone here the very best of everything. Take care, stay strong, stay well and lets all SU4C!
I’m sorry to hear that your husband seems to be getting a lot of the treatment side effects so soon, and if I can help in any way by offering you both some hope and sympathy by sharing my husbands experiences then that’s good, and equally vice versa!
Apart from when my husband was suddenly initially taken ill the first time In 2014 he has never felt ill either, or had treatment, so the Mets came as quite a shock, especially as it had been 5 years. As I said originally, the main side effect has been the hoarse voice, but he has also had mild aches and pains in his legs early on, and slight itchy skin which didn’t bother him too much. He read your reply, and wants you both to know that these side effects do come and go, and get better with time, and when he had the cold and felt pretty rubbish, a lot of the listed side effects came out, the diarrhea which he said was yellow (sorry!), fatigue, and he had a sore mouth too. He also found that toothpaste affected him, he had to stop using it for a while. But during the week his oncologist took him off the treatment these things disappeared after a couple of days and his cold went too. I’m convinced that because his immune system was already working hard shrinking the beast, the winter cold threw it into overdrive. I did suggest this to the oncologist, and he said it was a possibility. To be honest it is such a new treatment that there are no longitudinal research studies yet (although there are some recent ones), so the specialists can’t be experts yet on how or why side effects happen.
What dose of Axitinib is your husband taking? Mine was put on 10mg daily (5mg x2 daily 12 hours apart) and now we are into the 5th cycle our oncologist is almost certain the side effects are due to the Axitinib and not the Pembrolizumab. He is still on alternating 5 and10 mg each day and I have to say is very well. he is hoping he can stay at this dose now! He also has AF, irregular heartbeat, and had to change his blood thinner from Warfarin to a more compatible one with the treatment. Our oncologist has said it will take a few cycles to get the treatment dose right for him but it will still work.
Please give your husband our best wishes and hang in there, you don’t have to suffer bad side effects but as mine has said, it seems to get easier once the dose has been decided.
It's two weeks since your last post and I was just wondering how your husband is getting along?
Mine is into his 6th cycle now, and seems to be getting a variety of the listed Axitinib side effects but not to a debilitating degree. The diarrhoea comes and goes, and has been manageable with the help of Imodium if we are out somewhere, but he has also now been getting sore soles of the feet, nosebleeds (this may be linked to his blood thinner though) and itchy skin (particularly on his scrotum!!). He is now on a daily dose of 5mg daily and although he's getting mild side effects he's working and we are out and about. I think and hope this may be the dose that he will stay on from now on, we will see when he sees the oncologist in a couple of weeks. The Pembro is not causing any problems that they can identify and he is tolerating that well. He says that it feels like the Axitinib is moving around his body and choosing different areas react to :-) . We are weighing up the benefits of what it is doing in reduction and stopping spread, against the side effects, as the treatment is working.. significant shrinkage.
I hope this helps you and anyone else who is in a similar situation, as you say SU4C and be strong everyone!
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