Looks like mets for me

paintergrl

I found out today that my 9mm nodule on my lung has grown to 1.4cm in 1 month. We did extra scans to see if I could get in a drug trial. Not going to get in this drug trial, obviously. There are a few other tiny spots nearby in my lung. No other spots so far. Biopsy will be very soon and my Oncologist is researching drug options. We are shocked but also knew this was a real possibility. My radical nephrectomy was 3/23. I feel good physically. Any one have advice? My husband is taking it hard and we are going to tell our kids soon. My Dr was pretty optimistic about treatment and felt good about finding it so early. 

Hd67xlch

surgery............

Id try to have it surgically removed, and if that doesnt work then go on the drugs,JMO. Good luck.

Wehavenotimeatall

So Sorry

you have had this blow

there are now many treatments for you to try... votrient seems very promising for some

go to smart patients for  more info

I don’t have mets but I do how tough this is for your family and yourself

Your children are very young and you have that worry to cope with as well

many Hugs

Annie

 

msjax

Smart Patients

Sorry to hear this news -- hope you find some good answers for your situation.

I agree with Annie above, go to https://www.smartpatients.com/conversations -- excellent knowledge and support.

Thinking of you!

icemantoo

msjax said:

Smart Patients

Sorry to hear this news -- hope you find some good answers for your situation.

I agree with Annie above, go to https://www.smartpatients.com/conversations -- excellent knowledge and support.

Thinking of you!

Stay strong

Hopefully they can get a handle on this real soon.

 

 

icemantoo

paintergrl

Thanks

Thanks for your support! I got a call at 8pm tonight from the Renal Onocologist at UCHealth in Denver. She offered to enroll me in a study where I would get a combo of cabozantinib and pembrolizumab. I have an appointment on Monday at 9am! No messing around. No biopsy is required and we could start in about 2 weeks, maybe less. It sounds promising. I need to do more research and will check out Smart Patients. Its been a rough day for sure but I feel some hope. 

MarkDavid18

Sending prayers and support

I am so sorry you are going through this. I am happy to hear that you will be starting treatment soon. I pray that it shrinks those mets. I pray for you and your family for strength, comfort, peace and healing. Hang in there. 

Amy_Jo

paintergrl said:

Thanks

Thanks for your support! I got a call at 8pm tonight from the Renal Onocologist at UCHealth in Denver. She offered to enroll me in a study where I would get a combo of cabozantinib and pembrolizumab. I have an appointment on Monday at 9am! No messing around. No biopsy is required and we could start in about 2 weeks, maybe less. It sounds promising. I need to do more research and will check out Smart Patients. Its been a rough day for sure but I feel some hope. 

I was diagnosed in February

I was diagnosed in February had my left kidney removed March 8 2018. I was told my pathology was clear and I was cancer free. Two months later I have Mets in my liver lungs and spine. It is devastating I have 4 children 2,5,13,16. I have shared with my oldest what's going on and my Oncology office offers a social worker to help with the stress of it all. My oncologist started me on a combination of yervoy / opdivo. I recently had a second opinion and have decided to change care providers. My new oncologist offer a genetic testing and physician which was never offered by my first oncologist. I know it's hard stay positive I will keep you in my prayers. 

paintergrl

Amy_Jo said:

I was diagnosed in February

I was diagnosed in February had my left kidney removed March 8 2018. I was told my pathology was clear and I was cancer free. Two months later I have Mets in my liver lungs and spine. It is devastating I have 4 children 2,5,13,16. I have shared with my oldest what's going on and my Oncology office offers a social worker to help with the stress of it all. My oncologist started me on a combination of yervoy / opdivo. I recently had a second opinion and have decided to change care providers. My new oncologist offer a genetic testing and physician which was never offered by my first oncologist. I know it's hard stay positive I will keep you in my prayers. 

Thanks

I've seen your post and have been thinking of you. I have two boys 11 & 13. I have also been meeting with the social worker at the Oncologists office and utilizing all the support systems I can. I hope you get on the very best treatment possible and kick those buggers out of your body! Praying for you!! Appreciate every day!! 

paintergrl

Thanks

I've followed your posts and have thought a lot about you. I hope for the best treatment for you and for all of us! 

MarkDavid18

Amy_Jo said:

I was diagnosed in February

I was diagnosed in February had my left kidney removed March 8 2018. I was told my pathology was clear and I was cancer free. Two months later I have Mets in my liver lungs and spine. It is devastating I have 4 children 2,5,13,16. I have shared with my oldest what's going on and my Oncology office offers a social worker to help with the stress of it all. My oncologist started me on a combination of yervoy / opdivo. I recently had a second opinion and have decided to change care providers. My new oncologist offer a genetic testing and physician which was never offered by my first oncologist. I know it's hard stay positive I will keep you in my prayers. 

Treatment

I start yervoy/opdivo on Wed. I am curious how it went for you and what led you to change care providers? And are you starting a new treatment regiment?

marosa

Paintergrl, sending

Healing thoughts your way.  Wishing you the best in your treatment. Be well and stay strong.

Tapman63

Best Wishes...

...hang in there and stay positive - I hope you find a treatment that'll take care of eveything and get you healthy quickly.

 

Jim

JoeyZ

I also want to add my best

I also want to add my best wishes and hope your treatments go well and work quickly. Will be watching your progress! Take it easy on yourself.

Manufred

We have come a long way

Trials to date have unearthed a range of possible treatments for mRCC which are now becoming main stream treatment options, as a number of your cases demonstrate. 

It will always be a terrible shock to be diagnosed, but at least these days there is reason to think medical treatment can win, and with less SE's than the old-style chemo. 

I sincerely hope both of you have a good outcome from whatever treatment you receive.

Best wishes,

Fred

paintergrl

meeting with 2 Oncologists today

Spent the morning with the Renal Oncologist at UCHealth today. We will meet with my regular Oncologist this afternoon to talk about what he thinks is our best course of action. I'm thankful to have options and motivated doctors! Being spacy and distracted after my surgery I forgot that I was Chromophobe with some Sarcomtoid features. Good things in my favor are my mets are only in my lungs (so far) and small. Largest is 1.4 cm. We are hoping to start treatment soon - like next week. 

donna_lee

I defer to those who have been on drugs,

But wish you well as you enter a new phase.

Hugs,

donna_lee

todd121

paintergrl said:

meeting with 2 Oncologists today

Spent the morning with the Renal Oncologist at UCHealth today. We will meet with my regular Oncologist this afternoon to talk about what he thinks is our best course of action. I'm thankful to have options and motivated doctors! Being spacy and distracted after my surgery I forgot that I was Chromophobe with some Sarcomtoid features. Good things in my favor are my mets are only in my lungs (so far) and small. Largest is 1.4 cm. We are hoping to start treatment soon - like next week. 

Surgery or Radiation?

Are they inoperable? A number of my friends have had mets in lungs either surgically removed or zapped with radiation (using the cyber knife radiation I think they call it, stereotactic radiation).

Are you seeing an RCC medical oncologist? Not clear what kind of doc you are seeing from your posts. Is there some reason surgery/radiation is off the table? All the RCC oncologists I've seen have said this is preferred to systemic treatment (that is, drugs) if it is possible.

Wishing you the best,

Todd

paintergrl

todd121 said:

Surgery or Radiation?

Are they inoperable? A number of my friends have had mets in lungs either surgically removed or zapped with radiation (using the cyber knife radiation I think they call it, stereotactic radiation).

Are you seeing an RCC medical oncologist? Not clear what kind of doc you are seeing from your posts. Is there some reason surgery/radiation is off the table? All the RCC oncologists I've seen have said this is preferred to systemic treatment (that is, drugs) if it is possible.

Wishing you the best,

Todd

inoperable

The spots on my lungs are spread around so they are inoperable. I will ask about radiation. No one has mentioned that. I have an medical oncologist with Kaiser and then a Renal Oncologist at University of Colorado, Dr. Lam. Dr. Lam specializes in RCC. We decided to do the trial with UC. Its a drug + immunotherapy. Everyone agreed it is the best option for me for now. Hopefully, we'll start early next week. Thanks for the ideas, though. I will ask about radiation. 

LMCRJB13

All the best - positive vibes

All the best - positive vibes for a great outcome with this treatment.  We're all in this with you.

Ryan

paintergrl

todd121 said:

Surgery or Radiation?

Are they inoperable? A number of my friends have had mets in lungs either surgically removed or zapped with radiation (using the cyber knife radiation I think they call it, stereotactic radiation).

Are you seeing an RCC medical oncologist? Not clear what kind of doc you are seeing from your posts. Is there some reason surgery/radiation is off the table? All the RCC oncologists I've seen have said this is preferred to systemic treatment (that is, drugs) if it is possible.

Wishing you the best,

Todd

spread

I think they are doing a systemic approach because my cancer is grade 4 and actively spreading. We are hoping to keep it from spreading more and to other areas.