Kidney Cancer

Hi

new to these forums .. unfortunately I’m having to join. Having lost my father in law to bladder cancer 3 years ago we have just had the blow that my brother in law (40) has kidney cancer .. he’s peeing blood clots and is on and off pain.

im finding it hard to stay positive for my husband and MIL .. I just don’t know where to turn next ... 

the waiting is just the worst ! 

Anyone want to offer some words of support

Hi Abbie13

Mine was diagnosed as tumours in the tube from the kidney to the bladder. 

A ct scan will see it, but the camera in will not. 

Beg for a ct scan. I ended going private to push things along and the shared the results with both doctors 

Good luck 

Hi ,

Welcome to the community.  You say that your brother in law has been diagnosed so I presume that he has had a CT scan or biopsy already?

If he has had a CT scan the Drs are likely to know the extent of the tumour and if any nodes are affected.

The preferred option if the kidney cancer is still contained within the kidney is surgery to remove all or part of the kidney.  If successful this can be the end of the cancer although he would be monitored for several years afterwards.  Histology would examine the removed tumour and identify the type of kidney cancer and grade it.  They can also use something called the Fuhrman scale to estimate the likelihood of a recurrence.

If the cancer has already advanced beyond the kidney they may not operate but this could depend upon the extent of the spread but also if your BIL is suffering from his symptoms they may operate to remove the source of these problems.  I presume you are in the UK and there are guidelines regarding how soon after diagnosis treatment should have taken place.  Your BIL should not hesitate to ring the Drs up to push to get things done as soon as possible.

Treatment varies depending upon the type of kidney cancer.  Mine is the most common Renal Clear Cell and this can be treated but not cured by Biological therapies or immunotherapy.  These treatments are continually being developed and are enabling people to live for many years post diagnosis.  I am still on my first line treatment and am four years past my diagnosis of advanced kidney cancer, there are others who have been on for longer but as these drugs were only developed fairly recently it is not yet known how long they might be effective for.  They can have significant side effects so sometimes people have to try a few before finding one that they can tolerate.

I'm afraid I cannot offer much advice regarding the other types of kidney cancer as my knowledge is limited to that shared by others on this site.  If you were to fill in your profile (click on your username at the top right of the page and then go to edit profile) with what information you have it will make it easier for others to offer more specific support to you.  You can update it or alter it as often as you want.  To read anyone's profile just click on their name to see what they have written to get an idea of what others have put down.  You can make it as brief or as detailed as you like.

There is a group called family and friends (click here for a link to it) which you might like to check out.  The Macmillan helpline is also highly recommended from both you and your BIL.  It can offer emotional support but also practical advice regarding employment rights and financial advice for people affected by cancer.  You can call them on 0808 808 00 00 between 8am and 8pm daily.

Wishing you and your family all the best,

Gragon x

Hi ,

Welcome to the community although I am sorry to see that you have ended up here.  I was a bit confused by your medication for a minute as I had not heard of it but then I googled it and I have heard of it as Cabozantinib or Cabo.

I am on Pazopanib and suffered from very loose bowel movements but did not often need to go more frequently than normal or at extremely short notice.  If I did then I found that loperamide resolved the issue for me.  I think others have found that certain foods trigger this, broccoli was a bad one for me although that has resolved over time.  There have been a number of threads that mentioned Cabozantinib.  If you type this into the search box you will be taken to them and can look to see if others have suffered similar side effects and how others have resolved them.  Just be cautious and check the dates before responding as some of these conversations may have taken place some time ago.

You might find it useful to copy your post into your profile as in the future others are likely to loo there before responding to your posts for a bit of background.  Just copy your post, click on your username at the top right of the page and then the edit profile button, past your post and then alter it as you wish.  You can go back and alter or add to it at any time.

Wishing you all the best,

Gragon x

Hello Cliff 

I have just found your post and I was wondering if you are still on Cabometyx and how are you getting on?

my husband has been on the same treatment since June and  different side effects kick in all the time - diarrhoea being the most difficult one at the moment...

best

Yes still on the pill, but reduced strength, now on 40 mg.

have the hands and feet problems started yet ?.

Yes but he’d only had it once really bad and after a few days break it healed nicely. 
When he’s started the treatment it was mainly the sickness and high blood pressure , then he’s started having lots of spots ( he never had them before) on his face then the hand and feet and mouth issues but these healed ok.

the first scan since the start of the treatment wasn’t showing any improvement but it all looked stable. The oncologist said that it was probably because he had a few breaks because of his post op wound - the treatment was preventing it from healing....

she’s mentioned that maybe if things look stable in January she may reduce the dose to 40 

how are you finding it on reduced dose? How are the side effects? Do you feel any different on a lower dose?

thanks 

I was taking the 60mg for 4 months, 

the body was ready to give up., and I knew it, 

the Oncologist said take the break. It's your life , manage it but tell me what an when .

my kidney scar stared to heal quicker, after I went on the reduced dose, 

the side effects, mussels in my hands started to twitch with no control, be careful with hot things,

I got rubber gloves for washing up now. 

Feet sores ,  were / are a real pain , , yes he's got to get out an walk ,

im now under a dietian , she said loosing body mussel not fat, , so trying .to work out for a hour a week . 

Yes the visits to the toilet are frequent, some days better than others , 

watch out for the high blood pressure (I got my own machine)  

thyroid is no under control as that was giving me problems , but that should show up on the blood tests . 

 Any thing else , please ask . Only to glad to help. 

Thank you Cliff, it’s very helpful. 
I am finding that not many people are on the treatment so it’s hard to find any real patients reviews.

when you mentioned thyroid issues - were these related to the treatment or the disease? Also I am not quite sure what you mean regarding the diet? When you mentioned loosing muscles not fat? 
thanks

The thyroid issues came from the treatment. Your oncologist should be checking your blood , (ask)

weight loss is down to the loss of appetite, so I was given food supplements ( packed with vitamins) from the hospital , you can get it in a local chemist but it's expensive.

Try tomato soup, no food, and no exercise = weight loss , but it was muscle wasting away, hence the need to take exercise.

The numbers of people taking this drug , should increase ? But it is very expensive, and doesn't suit all cases ,  when I started out 220 plus days ago it had just been released as a first line treatment.