A decision to make re Stage 4 Treatment

Footstomper

tsd1983 said:

Trial not working

Hi All

Just thought I would provide an update for those interested.

My Dad had his 3 month scan today after starting the Checkmate 214 trial. Unfortunately the trial is not working and he has been taken off the trial today.
The Mets he had in the lungs have either stayed the same or grown, and the cancer has now spread to the liver.

He will start on sutent tomorrow.

We are praying and hoping that the sutent works... otherwise we may sadly be heading towards the end of what has been a relatively short journey with Stage 4 RCC.]

Hopefully the Checkmate 214 trial works for others.

Troy

Bugger!

I HOPE THE SUTENT WORKS fOR YOU.

Buy moist toilettes

tsd1983

Footstomper said:

Bugger!

I HOPE THE SUTENT WORKS fOR YOU.

Buy moist toilettes

An update on my Dad

Hi All

Just thought I would provide a bit of an update for you alll on my Dad here in Sydney, Australia.

My dad continues on the Sutent and hasn't really had any major side effects at the moment.

In recent weeks, his cough was becoming worse and he was really struggling to get his breath. Even brushing his teeth or putting on a shirt would cause breathlessness.

We indeed started to fear the worst - but after seeing a lung specialist, it was determined that a met in the lung was blocking his airways. The lung specialist decided to operate, and yesterday removed the offending met.

My Dad came out of the operation well and is feeling fantastic (well, as fantastic as he can at the moment). He has no shortness of breath at all and his cough is a lot better. He feels much more confident and the positivity he had at the start of this journey has returned.

The hope now is that the sutent works, and we start to see some positive results.

My fiance and I are getting marriedi n 11 weeks and he is determined to be there.

APny

tsd1983 said:

An update on my Dad

Hi All

Just thought I would provide a bit of an update for you alll on my Dad here in Sydney, Australia.

My dad continues on the Sutent and hasn't really had any major side effects at the moment.

In recent weeks, his cough was becoming worse and he was really struggling to get his breath. Even brushing his teeth or putting on a shirt would cause breathlessness.

We indeed started to fear the worst - but after seeing a lung specialist, it was determined that a met in the lung was blocking his airways. The lung specialist decided to operate, and yesterday removed the offending met.

My Dad came out of the operation well and is feeling fantastic (well, as fantastic as he can at the moment). He has no shortness of breath at all and his cough is a lot better. He feels much more confident and the positivity he had at the start of this journey has returned.

The hope now is that the sutent works, and we start to see some positive results.

My fiance and I are getting marriedi n 11 weeks and he is determined to be there.

So glad to hear this and that

So glad to hear this and that your dad is doing well. Congratulations on your upcoming wedding and I'm sure from the sound of things that your dad will be there.

Jojo61

APny said:

So glad to hear this and that

So glad to hear this and that your dad is doing well. Congratulations on your upcoming wedding and I'm sure from the sound of things that your dad will be there.

I am so glad that they could

I am so glad that they could relieve your dad's symptoms and hoping the sutent works great for him. I am sure he will enjoy your wedding too!

Hugs

Jojo

todd121

tsd1983 said:

An update on my Dad

Hi All

Just thought I would provide a bit of an update for you alll on my Dad here in Sydney, Australia.

My dad continues on the Sutent and hasn't really had any major side effects at the moment.

In recent weeks, his cough was becoming worse and he was really struggling to get his breath. Even brushing his teeth or putting on a shirt would cause breathlessness.

We indeed started to fear the worst - but after seeing a lung specialist, it was determined that a met in the lung was blocking his airways. The lung specialist decided to operate, and yesterday removed the offending met.

My Dad came out of the operation well and is feeling fantastic (well, as fantastic as he can at the moment). He has no shortness of breath at all and his cough is a lot better. He feels much more confident and the positivity he had at the start of this journey has returned.

The hope now is that the sutent works, and we start to see some positive results.

My fiance and I are getting marriedi n 11 weeks and he is determined to be there.

Thank you for the updates

I really appreciate the periodic updates. I'm glad they were able to help his breathing by removing this met.

Best of luck on the new drug.

Todd

grafer

tsd1983 said:

An update on my Dad

Hi All

Just thought I would provide a bit of an update for you alll on my Dad here in Sydney, Australia.

My dad continues on the Sutent and hasn't really had any major side effects at the moment.

In recent weeks, his cough was becoming worse and he was really struggling to get his breath. Even brushing his teeth or putting on a shirt would cause breathlessness.

We indeed started to fear the worst - but after seeing a lung specialist, it was determined that a met in the lung was blocking his airways. The lung specialist decided to operate, and yesterday removed the offending met.

My Dad came out of the operation well and is feeling fantastic (well, as fantastic as he can at the moment). He has no shortness of breath at all and his cough is a lot better. He feels much more confident and the positivity he had at the start of this journey has returned.

The hope now is that the sutent works, and we start to see some positive results.

My fiance and I are getting marriedi n 11 weeks and he is determined to be there.

update

Hi

Just wondering how yr dad is going on the Sutent ? Any good scan results ???

I am in Brisbane and am currently on the Checkmate 214 trial - started in May on the nivo / Ipi combination - now on the nivo alone.

regards

 

tsd1983

grafer said:

update

Hi

Just wondering how yr dad is going on the Sutent ? Any good scan results ???

I am in Brisbane and am currently on the Checkmate 214 trial - started in May on the nivo / Ipi combination - now on the nivo alone.

regards

 

An update

Hi All

It has been a while since I have provided an update on my Dad so I thought I'd do so now (including for you grafer).

As I said previously, unfortunately the Checkmate 214 trial did not deliver great results and saw the cancer rapidly spread to the liver and become more prolific in the lungs. My dad then moved onto sutent.

I mentioned last time I think that my dad had some breathing issues, whcih were fixed by some surgery involving a laser. He then had some radiotherapy as not all of this particular tumour could be removed by the laser.

Unfortunately, his shortness of breath returned and last week we were expecting the worst when getting the first three month scan results from the sutent as my dad had become quite weak and was struggling to do even the smallest of things.

However, we had some pleasant results. Certainly not out of the woods, but the good news is that sutent is showing signs of working. There has been no growth to any tumours. His oncologist is impressed by this as the cancer had previously been growing rapidly.

Both the mets in the lugs and liver have gotten slightly smaller or stayed the same.

They couldn't find a reason for the shortness of breath, so they decided to put him in for day surgery to flush out his lungs. He believes he now feels about 50% better in terms of breathing. The doctors also believe the side-effects from the radiotherapy may be causing the shortness of breath.

In short, we have a little bit of hope again.

My fiance and I are getting married next Friday and after a rocky road, it looks like my Dad will make it - which was one of his big goals.

Troy

Jojo61

tsd1983 said:

An update

Hi All

It has been a while since I have provided an update on my Dad so I thought I'd do so now (including for you grafer).

As I said previously, unfortunately the Checkmate 214 trial did not deliver great results and saw the cancer rapidly spread to the liver and become more prolific in the lungs. My dad then moved onto sutent.

I mentioned last time I think that my dad had some breathing issues, whcih were fixed by some surgery involving a laser. He then had some radiotherapy as not all of this particular tumour could be removed by the laser.

Unfortunately, his shortness of breath returned and last week we were expecting the worst when getting the first three month scan results from the sutent as my dad had become quite weak and was struggling to do even the smallest of things.

However, we had some pleasant results. Certainly not out of the woods, but the good news is that sutent is showing signs of working. There has been no growth to any tumours. His oncologist is impressed by this as the cancer had previously been growing rapidly.

Both the mets in the lugs and liver have gotten slightly smaller or stayed the same.

They couldn't find a reason for the shortness of breath, so they decided to put him in for day surgery to flush out his lungs. He believes he now feels about 50% better in terms of breathing. The doctors also believe the side-effects from the radiotherapy may be causing the shortness of breath.

In short, we have a little bit of hope again.

My fiance and I are getting married next Friday and after a rocky road, it looks like my Dad will make it - which was one of his big goals.

Troy

Hi Troy,
Thinking about you

Hi Troy,

Thinking about you and your family.

Have a wonderful wedding!

Hugs

Jojo

Abunai

Any further updates?

Hi, I was recently (well, September 1, 2016) diagnosed with a mass on my left kidney that turned out to be stage 4 RCC. My kidney and large (football sized) tumor were removed on September 22nd, which I thought was quite a bit of wasted time between diagnosis and surgery.

Prior to and following the nephrectomy, I experienced, and reported to my docs, that I was having an increasingly awkward gait and numbness in my legs.

I was sent home following the nephrectomy, and quickly lost leg and bladder function (urine retention). I was re-admitted to the hospital on Oct. 1, after my urologist took a second look at the CT scan that had identified my giant kidney tumor. He and a radiologist he called in found additional, metastatic tumors, including, I believe, the one that was compressing my spinal cord and that took out my legs.

The hospital ordered an MRI the next morning and performed emergency surgery to resect a T6/T7 spine tumor, that afternoon, to de-compress my spinal cord. I've been in recovery and rehabilitation since regaining some function in my legs. My final radiation therapy (10 total) for that T6/T7 tumor is today.

As of yet, nobody has really talked to me regarding my other mets, all bone mets including the one in my hip that is threatening to negate all of my rehabilitation work to get my walking abilitiy back (with a walker).

My appointment with the medical oncologist to even DISCUSS chemotherapy isn't for another 10 days. I'm getting discouraged. I want to fight this but feel like I'm being slow-rolled for palliative care only, with what appears to be a very aggressive cancer. I'm only 50, and I'm strong, and I really feel like I've got more left in me than the 15 months I'm reading everywhere for stage 4 RCC patients with multiple bone mets.

How is the sunitinib working with your dad. I am going to call the doctor today and ask to immediately start SOME sort of treatment and from what I've read, that's the right call.

Footstomper

STOP READING!

"I really feel like I've got more left in me than the 15 months I'm reading everywhere for stage 4 RCC patients with multiple bone mets."

I'M STAGE 4 GRADE 4 with lung Mets and have been since May 2003

There are other people here who have had it for longer and a lot harder than I. Stats on the internet are massively out of date and often insane. IGNORE THEM.

EVERYTHING IS CHANGING SO FAST that this disease, even at our stage, is turning from a terminal disease to a chronic treatable disease. So there is hope. Dont give up.15 months is nonsense.

Sometimes you do have to wait a little to get quality treatment. But as you say, you're 50, you're strong. Dont get discouraged, you've recieved a shocking diagnosis, but I think your prognosis is way out of date and a lot worse than it really is. 

Stay on this board and you'll find that its not as bad as you think.

Good luck and stay in touch.

rhominator

Good advice

That's a good assessment and excellent advice from Footstomper. 
Hang in there!

tsd1983

Unfortunately, Dad wasn't one of the lucky ones

I haven't written here for some time. I would often tell my Dad about this forum and bits and pieces I'd read on it, so I wanted to pass on an update.

On September 1 this year, my Dad was told by his doctors that there was nothing more they could do. He was given three months to live.

Dad passed away on September 24, 2016.

In the end he survived a little under two years from diagnosis. There's probably things we would have done differently, but with hindsight, I think we'd all say that. He fought an amazing fight and we were extremely proud of the way he remained so positive and strong through this battle.

In the end the sutent failed, and another drug he was put on also failed. 

He wasn't one of the lucky ones, but there's plenty out there who are so if anyone is reading this, don't give up. 

We found a lot of the information on the Internet contradicted doctors' views etc, so it's always good to get  well-rounded view and realise that each case is different.

Footstomper

tsd1983 said:

Unfortunately, Dad wasn't one of the lucky ones

I haven't written here for some time. I would often tell my Dad about this forum and bits and pieces I'd read on it, so I wanted to pass on an update.

On September 1 this year, my Dad was told by his doctors that there was nothing more they could do. He was given three months to live.

Dad passed away on September 24, 2016.

In the end he survived a little under two years from diagnosis. There's probably things we would have done differently, but with hindsight, I think we'd all say that. He fought an amazing fight and we were extremely proud of the way he remained so positive and strong through this battle.

In the end the sutent failed, and another drug he was put on also failed. 

He wasn't one of the lucky ones, but there's plenty out there who are so if anyone is reading this, don't give up. 

We found a lot of the information on the Internet contradicted doctors' views etc, so it's always good to get  well-rounded view and realise that each case is different.

tsd

I'm sorry for your loss. Dads are special.

icemantoo

So sorry

tsd,

 

So sorry.

 

Icemantoo

 

JerzyGrrl

tsd1983 said:

Unfortunately, Dad wasn't one of the lucky ones

I haven't written here for some time. I would often tell my Dad about this forum and bits and pieces I'd read on it, so I wanted to pass on an update.

On September 1 this year, my Dad was told by his doctors that there was nothing more they could do. He was given three months to live.

Dad passed away on September 24, 2016.

In the end he survived a little under two years from diagnosis. There's probably things we would have done differently, but with hindsight, I think we'd all say that. He fought an amazing fight and we were extremely proud of the way he remained so positive and strong through this battle.

In the end the sutent failed, and another drug he was put on also failed. 

He wasn't one of the lucky ones, but there's plenty out there who are so if anyone is reading this, don't give up. 

We found a lot of the information on the Internet contradicted doctors' views etc, so it's always good to get  well-rounded view and realise that each case is different.

So sorry...

TSD, so sorry to hear of your loss.  Hope you found the forum helpful. It's great to hear that your dad was positive and strong through this. Positive and strong is a good way to go through life, no matter what one's circumstances. 

Jerzy

Deanie0916

I am very sorry

to hear about your Dad's passing. I hope you are finding comfort in all of the good times and memories. I know his participation in the trial will give more knowledge to use against this disease. Prayers to you and your family.

mrou50

Sorry

I am sorry to hear that your father passed away, but the good news is his suffering is over.  Thank you for the update.

Mark

hardo718

So sorry

For your loss TSD.  I hope your memories of happy times together help to ease the grief.

God Bless,

Donna~

todd121

tsd1983 said:

Unfortunately, Dad wasn't one of the lucky ones

I haven't written here for some time. I would often tell my Dad about this forum and bits and pieces I'd read on it, so I wanted to pass on an update.

On September 1 this year, my Dad was told by his doctors that there was nothing more they could do. He was given three months to live.

Dad passed away on September 24, 2016.

In the end he survived a little under two years from diagnosis. There's probably things we would have done differently, but with hindsight, I think we'd all say that. He fought an amazing fight and we were extremely proud of the way he remained so positive and strong through this battle.

In the end the sutent failed, and another drug he was put on also failed. 

He wasn't one of the lucky ones, but there's plenty out there who are so if anyone is reading this, don't give up. 

We found a lot of the information on the Internet contradicted doctors' views etc, so it's always good to get  well-rounded view and realise that each case is different.

Challenges

I'm very sorry to hear this news.

This disease really is nasty and it's not beat yet for sure. I lost a good friend this summer. He also lived about 2 years from diagnosis. I don't know the details of his treatment - he chose not to discuss it.

This just tells me that we have more work to do and that I really hate that this disease is taking good people down.

Wishing you peace in this difficult time as you grieve the loss of your dad.

Todd

Eliezer2

done both

did sutent 4 years and then the pair you mention by infusion.   they worked for me really well but only short time - maybe 8 months.   individual experience widely varies.  you can at least gain some respite for months even if it wears off.  the infusions have very few side effects.   sutent can also wear off.