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Lung nodules found

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

Well, I hate to break the streak of NEDs we've been getting lately, but my CT scan from yesterday was not good. I have 2 nodules in my right lung.

I had the scans yesterday but the computer system wasn't working properly and my doctor did not get the radiology reports. He did have the scans and thought they looked good however he did say he saw a lung nodule. He said we'd have to wait for the report. I called back this afternoon to check on the reports and got the bad news over the phone.

Looking back at my past 3 CT scan reports, it appears there was something there from the beginning but they have just reached a size that has become alarming. One has grown from ..4 X .3 cm to 1.2 X 1.4 cm in the past 6 months. The other has grown from 2mm to .8 X .8 cm.

I'll be seeing an oncologist soon after January 1 because most people are on holiday next week. All I know to do now is see what the oncologist says and make plans for phase 2 of this mess.

--David

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

I was at The National Institute of Health for familial kidney cancer studies. While there, they identified a lung mass 2 x 1.5 cm. I get followup testing next week and will meet with the Thorasic surgeon. I was not ready for round two, but apparently, it was ready for me. Good luck David.

David S.

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

What follow up testing are you doing? And meeting with a surgeon? Are you considering surgery? Keep us informed. I have several lung mets and that is why I am taking the experimental drug in a clinical trial. It is a form of immunotherapy, giving my t cells the ability to attack rcc cells that put up an invisible shield...

You will be in my thoughts and prayers as well.

Paula XO

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Yep - don't get too dismayed about it - lung mets seem to be particularly responsive to treatment. One notable member of the KIDNEY_ONC list has been in full remission for 8 or so years after having hundreds of lung mets and since then we have numerous and multiplying new lines of approach, as Paula hass said.

Moraboy
Posts: 7
Joined: Oct 2012

On Monday I had a nasty met in my right lung removed. It had almost totally blocked the bronchi to my lung, and this is my "good" lung. I can know breath better then at any point in the last 5 months. This met didnt show up on any scan or xray. Mu pulmanary doctor had a hunch and did a bronchi scope and found it.i love it when doctors work together. I also started my radiation treatments on my left lung met, their big and stubborn. Doing 10 treatments waiting and seeing if they are having any affect. I have also had my meds changed from Votrient ( which didn't touch the lung mets), to Afintor we will see how this goes. Have a good weekend.

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

Thanks everyone! I appreciate the kind words and the encouragement. Now I have a new area of RCC to research. It's kind of weird because I felt like I understood the level of RCC I was involved with before yesterday. Now I've entered an entirely new phase and I feel lost again like I was a year ago. I know it will get better with understanding but I'm kind of pissed right now.

My goal on the bike was to have a 5000 mile year, the year following surgery, well I'm 160 miles from that goal. I'll get there easily (if I get out of this funk.) Don't worry, I won't let this keep me from my goal.

David S., Moraboy, Paula, Tex and others, I'm thinking about you as you fight the good fight!

--David

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

Sorry David i know this sucks,it knocks us down then we get right back up even more pissed off than before

foxhd's picture
foxhd
Posts: 1928
Joined: Oct 2011

David, be ready to talk to your Dr. about available trials. You'll get through this. It's just part of the challenge.

jennsam's picture
jennsam
Posts: 14
Joined: Oct 2012

4 mo post op RCC stage 1 grade 2 partial Laproscopic nephrectomy. I have nodules 2 in my left lung with effusion and 1 on my colon....everyone is unconcerned saying its too early after surgery to access the nodules they are in the 2-6 mm range (small) When should I push? Since 5 weeks post op I have had pneumonia( in hospital 5 days) Bronchitis 3 weeks later, had the Flu 2 weeks ago now sick again with 102 fever and coughing up brown junk....

   Please keep us informed of what the doc says so I dont feel like a total idiot asking for uneccessary testing.  I am supposed to have a kidney sono in FEB only and 1 year CT SCAN in AUG....waaay to long.

TY

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

If the nodules are related to the RCC, you did not have stage 1.  The nodules are very small.  And if your Dr. makes you feel like an idiot for asking questions, time to find a new Doctor.  

 

Flu followed brochitis is very common for me.  

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Let's hope Afinitor gets the lung mets the radiation doesn't. Good luck!

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

My followup testing includes:
Pulminary Function Test
Chest X-ray
PET scan
Brain MRI

This will all be done next friday. I meet with a thoracic surgeon after the holidays. My growth is small, and it could be old. I am concerned and anxious, but I am being treated by some of the best Dr's in the country (at NIH).

angec's picture
angec
Posts: 622
Joined: Mar 2012

Sorry to hear about the lung mets. But they are relatively small, now would be the time to act on it and zap them away! TW, was that person who is without mets for 8 years on any meds all of this time?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Ange, that was on HD IL2 therapy at a time when there was nothing else (aside from interferons) in the way of systemic therapies. Rather than risk giving you an inacorrect answer, I've just asked her for the accurate answer and a couple of minutes ago got her reply, so, hot off the press:

"I have had NO treatment, but did fall and break my wrist while skiing two
years ago. I have also traveled to Europe about five times, had two
grandbabies, and have started a program on patient advocacy.

You certainly may quote me, or have anyone talk to me, give out my email
address, anything to help another patient get the treatment--whether this
or any one--that are available.

Love to spread the news of the possibility of a cure.

Peggy"

angec's picture
angec
Posts: 622
Joined: Mar 2012

So no treatment after the IL2? That is wonderful! Thanks TW! xxoo PS TW, did your hair turn white or Red?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Peggy's offspring are all writers and she writes very attractively. You might want to sample her blog at:

http://peggyrcc.wordpress.com/2012/12/

The parts of my hair that were whitish are still whitish (well, near enough white, to be honest!) but the psrts that were red (not on public display) are still red!

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

David S - Regret the finding. But I'm glad they found it before the mass/nodule found you with nasty symptoms. NIH is a good place to have on your team. Keep us posted.

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

Hang in there David. There's a big arsenal of powerful weapons that will zap those little suckers in no time. Meanwhile, enjoy every day until you go to the doctor. Try not to think about it. (easily said, but we've all been in that boat). I had to wait 6 weeks with no meds to start the trial in Nashville! My thoughts and prayers are with you.

Love, Paula XO

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

David - Sorry to hear your NED status has been interrupted but I'm confident it will be temporary. I recall how fast John's lung mets grew between his IL2 treatment and Nivolumab/Votrient trial. It was a scary time so I feel your fear. But as frightening as it was, it was the first point of attack for the trial drugs. I agree with Fox; get ready to talk trials with your oncologist. Know we're all with you!

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

I had a PET scan and met with my thoracic surgeon this week. I also learned this week that the radiology report shows 25 nodules scattered across both lungs. I have no idea why I wasn't told this. I was only told there were 2 nodules that had increased in size. The others must be too small to measure. I don't have an answer yet why I wasn't told.

Anyway, I'll be having VAT surgery on February 11 to remove some of the smaller nodules near the periphery of my left lung. He said he's not going after the larger nodules because of their location deep in the lung. Then we will have the pathology report which surely will indicate RCC. My inclination is to go with HD IL-2.

A new complication arose this week which will probably delay surgery. I have shingles. I had shingles 20 years ago and it was far worse than this but I guess it wanted to visit again. Nothing like an unwelcome guest.

I rode my bike today. It was raining. Smile

--David

 

foxhd's picture
foxhd
Posts: 1928
Joined: Oct 2011

hope you had a good ride anyway. I remember having some of the best runs when my lungs were loaded. And it never bothered me. My breathing was excellent.

I was not expecting to hear about the increase in those nasty buggers. But you sound ready to get them.  I'm glad you have a plan. Too often it is , "What should I do?"

I'm beginning to think cancer is a PIA. Have you Dr. spend the night before surgery in a Holiday Inn. (when I had my nephrectomy, the doctor asked if I had any questions and I asked him if he slept well the night before and told him I hoped he spent the night in a Holiday Inn.)  We have to go at this head on. Right David? Good luck. Fox.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

If you get the opportunity for IL2 I'd go for it David. It's pretty safe to say you'd meet all the performance criteria with ease.  I wonder if you could get into the new regimen they're testing with the combo designed to reduce the side-effects of IL2?

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

Thanks TW. I'm not aware of the new IL2 regimen. I'll look into it. Thanks!

--David

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

Fox,

Yeah, cancer is a PIA. You should know that well!

The ride was still good, even though it was raining! I can ride with no lung problems. That doesn't seem right but I guess that's the way it is.

I borrowed one of my favorite sayings from an interview I heard with Jackson Browne. He was describing some difficult time in his life and he said "The only way through it is through it."  I tell myself that all of the time.

I appreciate your interest and concern.

--David

These posts never end up where I wanted them!

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

Sorry to hear about the extra mets,but i am also happy there are not any discovered any where else,i think you will respond well to the HD-IL treatments

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

Thanks Mike. I'm also glad I had all clear elsewhere!

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

David,

While I was hoping for better news, your stamina in riding tells me your body isn't aware anything is wrong. So let's kick the RCC's (or whatever it is) butt before the rest of you realizes there's a problem.  (It works with Fox! And Tex ain't doing bad either.)

As far as the number, that's interesting. John -- just two weeks ago -- asked his Dr. how many nodules were in his lungs. He's been told since diagnosis that he has multiple lung nodules, but never how many. Rather than answering him, Dr. Hammers pulled up his scan to more or less illustrate the difficulty in saying how many due to size, etc. (or maybe he was just saying he didn't feel like counting.)  There were several dark, abnormally shaped areas that he pointed out, but you got the feeling that counting was not an exact science. Jeff I'm sure can provide a much better explanation.  

You mention HD IL-2. I apologize for not being on top of your situation, but I've not had much time over the past couple weeks to check in here. Are trials with Nivolumab out of the question? Do you follow Chris Battle? Did you read his update this past week on his Cabo experience?

Sorry about shingles, but keep your chin up. There's a reason for everything. We'll be sending you prayers and will be here if you want to vent.

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

David, you won't lack good advice on ACOR and it seems the consensus there chimes with that here!

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

Alice and Tex,

Thanks! I'm concerned about the VATS for a biopsy, so I'm working on getting a second opinion from the oncologist at Vanderbilt where I hope I will be getting the HD IL2 treatment. I didn't go there first because 1) I was trying to figure things out after the CT scan report and 2) they are out-of-network for my insurance coverage. I was able to get the consult considered in network so I'll go from there.

--David

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