New Member from Brisbane

[BrisbaneSP]

Good Afternoon,

New member here from Brisbane, have recently been diagnosed with CCRCC (Kidney cancer)

Im Stage 4 and terminal, Has metastasised to my lungs and have nodes on both lungs top and bottom.

Im thinking i have had my cancer for some time and have accepted it, it is what it is as I have felt my Tumour/Kidney for some time, I thought it was a Hernia.

Yes i can feel my tumour its rather large.

Im currently on Immuno treatment (Pembrolizumab) every 3 weeks 

Have just come on Lenvima as the side effects were not worth carrying on.

Just wanted to say hello and hope everyone is ok 

[Liz73]

Sorry to hear of your diagnosis. I had a right kidney radical nephrectomy in December 2023. I'm still having breast and stomach scans to see if they is metastasis. Hopefully there isn't. It's hard now to plan anything as the unknown is ever present.. 

All the best.

Liz

[LindaMS]

Hi, I'm on a similar journey. Stage 4 terminal cancer in the lungs which has evidently metastasised from endometrial cancer I had 15years ago. Seems there was an escapee cancer cell floating around all that time.  Like you. I'm having Pembrolizumab infusion every three weeks. Was on 20 mg of Lenvima for three months and felt just awful. Now on 10mg which is easier but managing the the side effects is still hard work. Sending my best thoughts!

[BrisbaneSP]

Sorry to hear of your diagnosis, hopefully you are able to get some more insightful answers to give you a lot more idea of whats ahead.

This is my main frustration being told i have stage 4 and im terminal but they will do their best (which i absolutely appreciate) but its the unknown and no definitive prognosis that frustrates me.

I to am on 10mg of Lenvima after the 20mg knocked me round something chronic, mainly pain in my mouth eating and brushing teeth, was terrible.

I have treatment this coming Tuesday at Redlands and just glad i no longer have to travel into the PA for it as its so smooth and 1 minute from home.

[BrisbaneSP]

Hi Liz,

Hope you are recovering well, mine is still inside me and its my left kidney, they are trying to reduce its size before removing it (or i think thats the plan) last scan showed it had reduced in overall size by 5cm but has a long way to go.

I was back in Hospital early Sunday morning with chest pains and had all the necessary scans and tests but they didnt find anything major.

The one CT scan has shown a lesion on my left lung but i need to talk with my oncologist at Tuesday appt and find out whether its new or an existing one, the hosp couldnt confirm this so will be interesting to see what oncologist says.

Hopefully you have managed to catch yours in time and it wont affect other areas of your body, fingers crossed for you 🙂

[Liz73]

I also have lesions in my lungs and a thickening of the gallbladder wall. Waiting for ultrasound results of my gallbladder yesterday. The radiologist was so strong that my right side is so painful. Trying to get off the table was so hard. He was so rude and rushing me . A terrible experience. Worst than a kidney biposy. 

[BrisbaneSP]

Sorry to hear of your not pleasant treatment.

So far i havent had to many issues with poor treatment mainly lack of information is what frustrates me the most.

I have my standard treatment tomorrow which i want to talk to doctor about some results from last weeks unscheduled hospital visit, and i feel off.

Im not in any pain but i feel not right inside, jabbing aches and pains but then they go something feels like its happening inside but nothing bad enough to worry to much about or at least i hope not.

[Liz73]

Sorry to hear that. I'm also fed up with lack of  information.

  I talked to Can Assist in Dec 23 before my surgery. She promised me the world. All I received was fuel vouchers donated by Lions( thebranch of which I am a member). She hasn't answered my calls since Dec. Not one callback. 

So much for her saying ' From now on we will pay any bill."

  I'm still waiting on  an urgent appt requested by my gp as my kidney numbers aren't the best.

  Oh well. Hope all goes well for you. The unknown is so unknown.