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Looks like mets for me

paintergrl's picture
paintergrl
Posts: 47
Joined: May 2018

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's picture
Hd67xlch
Posts: 143
Joined: Apr 2016

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

Wehavenotimeatall
Posts: 472
Joined: Aug 2017

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
Posts: 20
Joined: Dec 2017

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's picture
icemantoo
Posts: 3180
Joined: Jan 2010

Hopefully they can get a handle on this real soon.

 

 

icemantoo

paintergrl's picture
paintergrl
Posts: 47
Joined: May 2018

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. 

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

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's picture
paintergrl
Posts: 47
Joined: May 2018

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!! 

MarkDavid18's picture
MarkDavid18
Posts: 57
Joined: May 2018

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?

Jan4you's picture
Jan4you
Posts: 1308
Joined: Oct 2013

Oh dear, this is a challenge to say the least! Know that we will walk beside you and be there for you on this journey~

Please take advantage of therapy if you can fit in your busy lifestyle. You need the validation, the guidance and understanding!

You deserve health and wellnes!

Sending you and yours a healing HUG!

Jan

jeffstl34
Posts: 8
Joined: Sep 2017

My thoughts are with you and your family. It is never easy.  

MarkDavid18's picture
MarkDavid18
Posts: 57
Joined: May 2018

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. 

paintergrl's picture
paintergrl
Posts: 47
Joined: May 2018

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! 

marosa's picture
marosa
Posts: 327
Joined: Feb 2015

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

Tapman63's picture
Tapman63
Posts: 134
Joined: Dec 2017

...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's picture
JoeyZ
Posts: 191
Joined: Mar 2018

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's picture
Manufred
Posts: 218
Joined: May 2017

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's picture
paintergrl
Posts: 47
Joined: May 2018

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. 

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

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's picture
paintergrl
Posts: 47
Joined: May 2018

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. 

paintergrl's picture
paintergrl
Posts: 47
Joined: May 2018

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. 

rn1774
Posts: 9
Joined: May 2018

Paintergrl, what is a systemic approach? Myself I have Sarcomatoid and grade 4 but stage 1 with 4.6 cm tumor. I will have the 3 month scan in August.. very nervous..

You mention your cancer actively spread, is your nodule in your lung is spreading? 

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

Of course it's good to ask, but from hearing others stories, they seemed to use radiation for single tumors or maybe 1-2 spots. If you have multiple spots scattered throughout your lungs it may not be an option.

I'm glad you have an RCC specialist as a consultant. The field is changing fast and they are finding more and more that a shotgun approach or treating everybody the same is not working very well and RCC specialists are better able to deal with the fact that RCC is not a single disease, but, in fact, many diseases which require different treatments. I'm quoting Dr. Figlin at Cedars Sinai who I just heard talk yesterday on this issue. There are many oncologists that are out of touch with the latest break throughs in RCC who are likely to give an ineffectual treatment, so getting good advice is incredibly important.

Regards,

Todd

donna_lee's picture
donna_lee
Posts: 883
Joined: Feb 2009

But wish you well as you enter a new phase.

Hugs,

donna_lee

LMCRJB13's picture
LMCRJB13
Posts: 82
Joined: Oct 2017

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

Ryan

Bryn1108's picture
Bryn1108
Posts: 74
Joined: Jul 2017

Lifting you and your family up everyday in my prayers.  

AnnissaP's picture
AnnissaP
Posts: 617
Joined: Sep 2017

Yes, finding it early is such a good thing. I hope you get the best care and medicine possible!!! I hope you heal and do well...nothing is impossible!

Steve.Adam's picture
Steve.Adam
Posts: 457
Joined: Oct 2016

Hi Paintergrl,

I like the idea of the painted rocks.  A couple of times I have left little surprises for people knowing there was really no chance that anyone would ever find them. But if someone ever does they will at least get a laugh out of it.

Rocks are forever so they might be found decades or even centuries in the future.

Wishing you well,

Steve.

Jan4you's picture
Jan4you
Posts: 1308
Joined: Oct 2013

We understand, the best we possibly can, how this is a struggle with the unknown, balanced with HOPE!

Know that WE are standing beside you ALL THE WAY!!

Sending  you healing hugs to you and yours!

Jan

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
Posts: 204
Joined: Oct 2017

On this leg of your journey-I'm hoping you've found ypur lucky charm-best of luck -June

a_oaklee
Posts: 414
Joined: Nov 2013

I wish I knew in the beginning of my husbands treatment what we know now.  He was diagnosed Stage 4 Jan 2012.  He is doing well.  The best thing you can do for yourself is be a member of SmartPatients.  There is an impressive knowledge base there, and I guarantee you will be impressed.  I agree with what Todd said.  I think you should pursue an appointment with a radiation oncologist.  My husband has had radiation for mets and they have been destroyed.  It's a good option to at least check out if it is another treatment option for you to consider.  Information is power.  Second opinions are invaluable.  Every RCC patient is unique and it would be good for you to at least talk to an expert in radiation oncology.  I wish you the very best.  Another thing about smart patients is that most people are Stage 4, and it gives you alot of hope to know that there are many of them doing well.

paintergrl's picture
paintergrl
Posts: 47
Joined: May 2018

I am on Smart Patients and its great! I will definitely look into the radiation. Thank you!!

a_oaklee
Posts: 414
Joined: Nov 2013

I am so glad you became a member.  Dont hesitate to introduce yourself and ask for advice.  Susan P is an expert and knows everything about radiation therapy.  Stay a member here too, because both boards are awesome.  Csn is very supportive and I think more casual.  You will see the difference.  Both sites have very friendly helpful people.  

paintergrl's picture
paintergrl
Posts: 47
Joined: May 2018

I agree! I do look at both boards. I even met up with another RCC patient who lives near me from SP! I have posted a few times on SP. I have the same screen name there too. There really is nothing else like other people who are going through the same thing. I definitely feel more hopeful too. My goal is to live until my youngest son graduates from HS - 7 years and maybe longer!! 

Deanie0916
Posts: 234
Joined: Nov 2016

Hope and pray for wisdom for the next steps.

ImNotDeadYet's picture
ImNotDeadYet
Posts: 239
Joined: Apr 2017

You're in great hands. I'm at UCHealth too, though with a different oncologist in the same group. They are fantastic. The care I've received from them and from others there has been great. I'm on Votrient for my lung mets, and so far so good. I hope your results are as good or better. Wishing you all the best!

Gary

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