metastatic kidney cancer

Hi

Firstly I’m sorry to hear you’re at this stage and wishing you all the best for your future challenge.

My husband has Stage IV Metastatic RCC with metastases in his lungs (nodules) lymph node in his chest, right adrenal gland and now pancreas. He has only last week started on a combined immunotherapy regime of Axitinib and Pembrolizumab which I understand to be a relatively new combo therapy for metastatic RCC. So far (it’s only been a week) he’s tolerating the treatment really well. 

we can’t speak to the other drugs you’ve mentioned but I just wanted to let you know of the option we’re on maybe worth discussing with your consultants to see if it’s available to you, however the caveat may be that we are receiving private care as we are fortunate in that we have health insurance with my employers. 

Wishing you good luck and god speed on this journey 

Thank you for your reply. It is certainly another option to be considered. I prepare for consultations carefully with lists of questions which the doctors cannot always answer. 
I feel humbled as your husband has far more to think about than me. 
My children are very supportive but have been shocked as have I. My maternal relatives all lived to late 80s and 90s.  Being a strong person my family thought I would carry on the long life family tradition.
Your husband and I could be two of the 8% survivors.

Please pass on my grateful thanks and good wishes for the future. 

Hi 

Sunitinib was the first member of a drug "family" which includes Pazopanib and Axitinib. Many in this group are on Pazopanib, 600mg/day.

If you read the thread "Pazopanib" posted by  see comments by  n myself re side effects.

As for Axitinib,several folk are on it in combo with another drug. Try searching in  Discussion either under Axitinib  or immunotherapy .

Hope that's useful,

Sue

Hi ,

I'm sorry I haven't responded earlier but I have not been well (nothing cancer related) but I have been reading your posts with interest.

It was your recent comment regarding survival rates which prompted me to respond in that you referred to an 8% survival rate.  I am not aware of where you got your information regarding these rates but it is important to be aware that these figures are changing all the time.  I am on Pazopanib and have been so for five years now, still on the maximum dose of 800mg.  I am on a trial which means that if the tumours shrink and stay shrunk by a certain percentage for four cycles (24 weeks) I can come off the medication for as many cycles as it takes for them to increase by a slightly smaller percentage.  Until recently this meant I had roughly six months on medication followed by three months off.  Recently for the first time my cancer responded by continuing to decrease whilst off medication and I am currently enjoying a six month break.

I recently received a letter from the people running the trial to extent it for another year.  Talking to the research nurse it appears that more people on the trial are living for longer that they anticipated, that is both people like me who take it intermittently and others who take it without breaks.  In order to get meaningful results they are having to increase the duration of the trial.

There are side effects and part of the trial was to see what impact treatment breaks had on the side effects.  When I am on the medication I have loose bowel movements but not at short notice.  I have previously responded with when I am on my medication to certain foods but not for my most recent periods on medication.  Other than the white hair I now get very little in the way of side effects.  There are a number of people on this site who are many years down the line.  If you click on their username and read their profiles most have put a little bit of their history on here.  There are also several threads entitled Stutent ( or subitinib) or Votrient (or Pazopanib) which detail peoples responses to these drugs.  If you put this in the search box several conversations will be brought up.

I had part of my kidney removed when first diagnosed but 18 months later tumours were discovered in my abdominal cavity.  Some time ago I was informed that I now had tumours in my lungs.  I have one in my lower right lobe and one in my lower left lobe.  At the largest they have been 8mm and 11 mm.  At various times I have had numerous other tumours in my lungs but none more than 1mm and they do not record them until they get that big.  These smaller tumours all disappear when I go back onto my treatment and the others shrink to less than 4mm.  They cause me no problems and joined a choir about six months ago.

I know that these drugs do not suit everyone and some people really struggle with the side effects but the oncologists are learning more about managing them all the time and you can always stop a treatment if it does not suit you and try another.

I completely recognise your choice to choose your treatment but would advise caution when researching the options.  The new drugs are so new that the survival rates are only just starting to be altered by them, the targeted therapies are slightly older than the immunotherapies but both are still recent.  It is important when researching the data to check the date that the information was collected.  It often takes a year or two to publish the findings so the date to look at is the data collection.  As these new treatments are only about ten years old at best there is no long term data available yet.

I hope that your treatment is successful whichever option you choose.

All the best,

Gragon x

Hi

I  agree with Gragon

re checking the dates. I've been on 600mgs /day  Pazopanib since 2013, with a treatment break of 3.5 years. Having gone back on it in October 2019, everything has shrunk in the last 3 months.

The survival rates are only statistics after all n we are all individuals.

Btw, name of drug is Sutent or Sunitinib ( sorry, my inner pedant coming out)

Gragon! Great to see you back here. Sorry to hear that you’ve had a few things to deal with, but the fact that you’re back and responding on several threads at once is a sure indication that you’ve regained balance. Delighted. 

Hello . Wishing you the very best and only the very best. I’d like to add some thoughts of my own. I wasn’t going to, but I found the inaccuracies in your original post quite troubling, so I’ll try to get my thoughts in order. 

First, Gragon, the statistic that zac1monty2 cites is indeed the one most commonly found, should you google such a thing, as an over-all figure for those at Stage 4 at the time of diagnosis. I remember the first time, vividly, still raw from surgery, that I read that number: THWACK! in the face, like treading on an upturned garden rake. Such was the impact, I could only close the laptop and walk away. So yes, zac1monty2, technically your statement was right - I mean, startlingly insensitive towards those others who might be arriving here newly diagnosed and frightened - but, in a narrow sense, correct. Those of us who have been paying attention for a while will have seen the speed of change in kidney cancer research and treatments. We KNOW that those stats are hopelessly out of date. Early on in my KC time my consultant said to me that even though it wasn’t curable as such, we have many tricks up our sleeve to keep you well for years. At that time I didn’t really have a clear idea of what he meant. Now I do. 

Second, you assert that drugs don’t work on kidney cancers. (IF you mean that CHEMO as most people might understand the word, is ineffective on kidney cancers, then yes, you’d be right. And IF you mean that current drug treatments are unlikely to be a CURE, then you’d also be right.) But the drugs do what the drugs are able to do, and if they can hold back progression of the disease by reduce existing tumours, hindering new ones from getting established... then that is great! Again, I found your statement a bit dismissive towards those of us here who are on drug treatments - whether they have been on for several years or, like myself, for less than a fortnight. 

Third, finally: For you, for your particular situation, at this particular time, it MAY well be that surgery is your best option. That’s between you and your medical team. And if indeed you do have access to a ground-breaking technique with the country’s foremost surgeons and state of the art facilities then, sure, go for it. Most of us are not in a position to demand that. 

At the time of my nephrectomy, I already knew that I had “a something” on my lung, so for a while there was the possibility that I was only healing from major kidney surgery to be strong enough to undergo lung surgery. However, after subsequent CT scans “it” was described as several, and then multiple. Surgery was no longer an option, and since then we’ve waited and watched. 

If your mets can be snipped out cleanly, that might be good. But what if others crop up? I had one appear near where the kidney used to be, which was then dealt with by RFA. Now I have another in my back, as well as the ones in both lungs. I too have been fortunate to have had quite a long trouble-free time but now playing Whack-a-Mole with individual tumours is no longer a sensible way to continue, hence the start of drug treatment which I hope will hit all of them wherever in the body they are. 

There are those here with long experience. You might be able to learn from them. There are others newly arrived. You might be able to help them. Blanket statements don’t really help. No two people’s cancer experience is the same. I hope you find your way through in the way that is most appropriate for you. 

- Mark 

Well said Mark

Sue

Mark, what a great piece of reasoned analysis. The best article I have read on the internet about kidney cancer started along the lines of 'If you are reading this, remember it, and the statistics are already completely out of date.' Brilliant. 

Hi Mark, Thank you for your detailed and carefully worded observations and advice. I will learn from the experiences of others. My motto has been “You are never too old to learn”. 

My intention was certainly not to hurt anyone but to express my frustration in an area where others would understand and offer advice and information. Fortunately this has happened and is helping me to become more patient. It has made me realise that many people live with cancer as  arthritis in many forms. I have advanced osteoarthritis too which is painful. Being on Rivaoxaban means I can’t take the more affective anti inflammatory medication. 

Thank you again for taking the time to respond to my post. I genuinely wish you well on your journey into the future. 

I, too, was totally shocked when told I had kidney cancer. I always thought I was reasonably healthy, and, like you, having maternal relatives living to a good age.  Here, I am almost 18 years later, after a number of operations and varying treatments - now on targeted chemo, but keeping going.