Stage 4 MRCC

NanoSecond said:

Yes they will put you back on Sutent

You have stage IV cancer so yes, you will need to go back on some sort of systemic therapy - likely starting with Sutent since you have responded so well to it so far.

Sutent is an anti-angiogenic therapy.  That means it interferes with the formation of new blood vessels.  That is why you had to stop taking it prior to and after your surgery.  In order to heal you need new blood vessels to form.  The question is what effect on your tumors, if any, has since resulted from being off of Sutent for these many months.  Your recent CT-scan will answer that question.

VC,

My husband also has Stage 4 Kidney Cancer with metastasis to the lungs, abdomon and spleen.  The doctor says it is "advanced and agressive" However, our doctor has not yet given us a prognosis of how long we have.  I think it is interesting and INCREDIBALLY sad that your dr did.  HAH and he was wrong, in his face!  I still wonder though.  If he were given 6 months to live we would be doing things very differently!  It just makes me wonder how knowledgable your dr. is.  It also makes me want to pose the question to our doctor.  But that seems incredically insensitive. 

I'm sorry you are here on this journey.  You are not alone!  Sending hugs and prayers your way!

vccortes713 said:

Thanks for your reply it

Thanks for your replies it helps me a lot.......Well it was a team of doctors from the hospital where I was initially admitted to and was confirmed by my oncologist about my lifespan......Anyways......Now that the tumor and the entire right kidney is gone, does it mean that if the surgery and everything went well, they're going to downgrade my cancer lets say to stage 3 or 2? And does it means that they're going to change their diagnosis from "incurable" and "terminal" to like curable? Thanks...

I know this is all new and scarey. But hang around awhile and you'll find that there is much to learn. Don't just ask questions but read past posts and how many of us have experienced  kidney cancer.

3 years ago this month I was given 6 months to live. And although I worked in health care, cancer was not in my data base of knowledge.

6 months after my nephrectomy and being told they "Got it all.", I was dealing with over 20 tumors. Lungs, nodes, liver,spine, pelvis, ribs.

I could have passed from being scared to death. So I saw another oncologist. Then another. And another. They all said the same thing. "Nothing we can do. Good luck to you."

I gave it one more shot. I was told, "We have a clinical trial that you may be interested in." Hell yeah. I became one of maybe 60 people in the country offered a chance to participate in the trial of the promising drug "MDX 1106." Now called nivolumab. I was in intense pain. Could barely walk by the end of 2011. The drug was infused every 3 weeks. Virtually no side effects.

By spring of 2012 I was weight lifting. Jogging 3 miles every other day. Golfing and riding my motorcycle. Need I mention that this is the end of 2014 and here I am typing this?

The biggest message that we deliver here is that you should always get another opinion. We are constantly amazed to find out how little most oncologists, or urologists know about kidney cancer. Much of this is because most information out there is old and out of date. You need a specialist. And none of this garbage about trusting your doctor, or believing that they know what is best, or that they said, "You don't need a second opinion."

You see, your future depends on you being your own advocate. I got lucky (so far). Not everyone does. But if my doctors hadn't told me that there was not anything they could do, I wouldn't have sought out more opinions. It is amazing that none of these other oncologists even knew about the trial drug that has saved my life.

vccortes713 said:

Thank you again everybody for

Thank you again everybody for your replies......I am becoming more educated with this thing that I had and will be very hopeful that I may live a little longer.....I just want to share to all of you the entirety of my story......

 

....I am 43 years old, strong and healthy before........I am a very workaholic guy, I work mostly 16 hrs a day..............

 

I have enjoyed life and looking forward for a brigther future until one day I felt pain in my right stomach. At first I thought I only had the common muscle pain so I took some ibuprofen but 4 days have passed and it still hurting so I went to the hospital emergency. After a series of test the dreaded news blew on my face...I have stage 4 kidney cancer and it spread into my lungs.....I cried so hard, almost every night.....I'm only 42 yrs old then, why me, there were no symptoms, everything is good, my appetite, urination etc...All of a sudden heaven and earth fell upon me....who will take care of my family? 

 

I was admitted for 3 days in the hospital for hypercalcemia due to the enormous tumor on my right kidney.....

 

Prognosis was so bad....team

of doctors and my oncologist were saying its so bad I only have approximately six months to live....they cant take out my tumor, they said it was too big and I will mot survive surgery because my immune system was so low because of the hypercalcemia......and I was lucky to survive that hypercalcemia that I nearly died.......I was introduce to Sutent they said it may prolong my life a bit but not to hope for too much......

 

Until after a total of 4 cycles of Sutent and CT scans every 3 months. Every CT scan shows improvement until what I called a miracle happened - the tumor shrunk in size....half the size when I was initially diagnosed.....A surgery was scheduled......

 

Its been a month now after my right radical nephrectomy....next week I will know the result of my CT scan.....

 

And now I have discovered this forum and I am now with you.....and I am very thankful for the warm welcome you gave me.....now I have new friends!

 

Hi vccortes, I am sorry you have been through so much and dealing with such scary news as a six month prognosis. The fact that good old Sutent has turned things around is just brilliant. I hope that the results of your scan will give you further positive news. 

I initially was a 1b grade 3, I had a partial nephrectomy, the tumour was removed fully encapsulated. Sadly fairly soon afterwards they found three new tumours which turned out to be on the same kidney. A little while later there were a lot more tumours in both lungs and cancer in my lymph. So of course I was elevated to stage 4. I have no idea what my prognosis is, I haven't asked and to be honest I don't want to know. I want to live without a sell by date embedded in my mind, some people prefer to know but I don't feel it is something that would be of any benefit. I need to keep a clear head and remain hopeful and determined to win!

All the best for next week:)

Djinnie x

vccortes713 said:

Yesterday was my scheduled

Yesterday was my scheduled appointment with my oncologist for the results of my CT scan and blood test.......my calcium in the blood is a little bit elevated so tommorow i will be receiving medicine on IV to correct it.....there was a growing tumor on my right 3rd rib(i don't know why on the 3rd rib because I don't have metastasi on the bone - only in the lungs) so they want me to undergo radiation therapy next week and 3 weeks from now if everything will be ok they will put me back on Sutent...they want me to heal completely before putting back on Sutent as it seems that my recovery from surgery was slow....

last week and until now I am constipated.... my last bowel movement is 2 days ago and prior to that it took me 5 days before having a bowel movement....This past few days, I've been taking sodium ducossate, senakot, milk ofmagnesia and prune juice and been drinking lots of water and eating a lot of fruits but I am worried as of now why I am still constipated? I am also still on 3X 30mg Morphine and Morphine breakthrough 5 mg every 4 hrs. Pls help. Thanks.

Your constipation is ikely due to your taking Morphine. It is a very well known side effect.  You may have to become more aggressive about getting ahead of it. Suggest taking 2 Senna-R tablets in the morning and adding Miralax later in the day - instead of Milk of Magnesia.

vccortes713 said:

Thank you for the much needed

Thank you for the much needed reply Mr. Nanosecond.....Yes next time I will definitely try all your suggestions.....No the Long acting morphine and breaktrough is not working and never It worked before for the spasm........So the other day I went to the hospital for the terrible gas spain I'm having......I know my stomach is bloated but not constipated (which is so unussual).

 

Anyways.......so nurses  took blood and x rays.....while at the hospital bed waiting for the results I notice I started parting a lot of gas one after the other to my relief.......after a few more hours the doctor came and said I have a twisted stomach and need a ct scan to confirm it......I told him I had just a ct scan 3 weeks ago and told him that I had pass gas already and feeling better so he gave me a choice to proceed with ct scan or go home.

 

I choose to go home and after now I feel so much better..........It's not good to have another ct scan after three weeks of just having it a while ago right?

Of course you would like to space out your CT-scans to minimize your exposure to radiation. However, after your surgery all of your "insides" may have re-arranged themselves now that the tumor is removed and there is new space created. So, if the pain returns, I would not hesitate to undergo that CT-scan to find out what, if anything, is going on.  Hopefully everything will settle down in just a few weeks time on its own.

Meanwhile I would try to keep track of what you consume to see if you can identify what may be causing the gas to build up in the first place. 

vccortes713 said:

I don't know if my oncologist

I don't know if my oncologist is telling me the truth or He just doesn't want me to worry? I had to stop Sutent 1 month before my right radical nephrectomy which was last Sept. 18, 2014 and until now. So it's been 2 1/2 months without Sutent but I'm taking Sutent again next week.....I just had one and only dose of Radiation Therapy for the ribs this morning..............This is the result of my latest CT scan and I don't know how bad this is. I'm hoping somebody may be able to interpret this for me.......

 

 

CT Scan Results for the Chest

 

There are no pleural or pericardial effusions. There are several enhancing posterior mediastinal lymp nodes measuring up to 1.5cm in diameter. these have increase in size since prior study. there are no enlarge axillary, supraclavicular or hilar lymp nodes. There is an enlarged right internal mammary lymph node measuring  7mm. This has developed in the interim. there has been progression of pleural nodularity along the right posterior inferior hermothorax.

 

The central airways are patent. There are multiple pulmonary nodules and subpleural nodules scattered througout the right lung. Pre existing nodules have all increase in size. The findings would be compatible with pulmonary metastatic disease. The largest nodule in the right lung is identified within the right lower lower lobe measuring 2.2cm. There is

a new tiny 2 mm nodule in the left upper lobe anteriorly at the level of the aortic arc on image 35. Several tiny new nodules are also identified scattered throughout the left lung. No other pulmonary abnormality identified. 

 

There has been progression of lytic and soft tissue metastasis in the right posterior six rib. There is also been progression involvinf the soft tissue metastasis involving the right posterior eight rib. No definite new osseous normality is identified..

 

My oncologist said that I'm in a better position now that my big tumor is gone compared to before but I Ithink stopping Sutent because of the surgery allowed the further spread of cancer in my lungs to the ribs.....

 

Do I still have a chance that after taking Sutent again will reverse the spread just like before? Am I dying now? Pls help.....

To make it short - your scan shows progression. 

You should try to rechallenge with Sutent - and it likely will work (since it had not failed prior to your stopping it).  There are several other FDA approved drugs available as well.  It might also be a good time to investigate joining a clinical trial for one or more of the new immune therapies (anti-PD1 or anti-PDL1 in combo with other drugs).

In your case I would also make sure I was seeing a renal cancer expert oncologist.  He/she can guide you in the best direction. 

And if you have not done so, register (for free) at:

www.SmartPatients.com

Best wishes,

-N

vccortes713 said:

Thank you NanoSecond. How

Thank you NanoSecond. How about the fact that the big tumor and the kidney that was removed from me? Can we not consider it as a big factor in determining my overall health condition?  Can we say that I am in a better health situation now because 95% of the cancer was gone although there is a progression in the metastasis? Would you say I will liveuch longer than when the tumor was with me? Thanks again.....

my husband was diagnosed with stage 4 renal cancer in 7/2013; he had 2 mets on the spine in addition to a 10 cm tumor in his right kidney.

he had a laminectomy to one met and cyberknife to the other and a nephrectom; all visible cancer is gone for now but it is still and always will be stage 4 because it left the kidney. The assumption is that it is still in the body but no telling when it may show or IF it will show up.

that's why he is followed closely. His oncologist says there are some studies that show removing the tumor burden may slow and occasionally stop progression but not a guarante.

there is no sugar coating the fact that it is not cureable and that each followup is stressful. So far, his scans have been good and his oncologist says the longer he goes without progression, the better the odds but no way is he in the clear.

tough stuff but the stress eases as time passes

Sarah