I have been following posts and I am wondering what this "nuvomolab" is? I have not heard of it before and I can't bring it up by googling it.
Sorry to hear about the situation you are in-kind of feel like "damned if you do and damned if you don't". Hopefully the cancer will stay away. I hope it does.
3 years 11 months ago - 3 years 11 months ago#51259by koolchg
Hi, it is me again. I am glad that you got a second opinion and that they are going to monitor. If there is no sign of cancer in the lymph nodes and no tumors anywhere else then even Nivolumab won't help. It is an immunotherapy treatment that kills cancer cells rather than healthy cell like chemo therapy. If there is no sign of cancer then the 3 month monitoring sounds logical. The only reason I did chemo after my kidney removal was because some cells lit up on a pet scan which could mean that cancer was still present after surgery. Had the CT and PET scan been clean, my doctors would have just done the monitoring. I would have loved to not have had chemo but there were signs. I have been diagnosed 4 times with cancer and told 3 times that it was gone. The 3rd time, I underwent surgery and they said they got it all and I required no follow-up treatment, just monitoring, I had cancer again within a year, it was everywhere. However, when they said I would need chemo again, my answer was "no way", I had been blessed with more time, but this cancer was out to get me. That was when my doctor and I found and got the Nivolumab. Things happen for a reason and in their own time. After being diagnosed with metastatic bladder cancer, and having immunotherapy infusions every other week for a year, I am in remission. You have to do what is best for you, but why put your body through chemo if nothing is there?? They won't even give you Nivolumab unless they can measure the tumor(s).
Last edit: 3 years 11 months ago by koolchg. Reason: Correct spelling...
Here's the answer from the local oncologist that Vanderbilt referred us to: Do no chemo. There is no proof that it increases the life expectancy. Doug is stage 3 because of the size and location of the tumor that was removed with the kidney. Because chemo is hard on the kidneys (and he only has one), the local oncologist is recommending nothing. Just do CT scans every 3 months. Feels like a ticking time bomb. Oh, and the CT scans are hard on the kidney too. I'm not a happy camper. The doctors do not know if Doug's tumor contains PD-1 cells; I may push them to test to see so we can know if Nuvolomab could be an option.
It is hard to be told no chemo, yes chemo and then no chemo. Does any oncologist REALLY have an answer? We're listening to the oncologists -- it is just very scary what they are telling us.
Hi Anita, I am sorry about Doug and your situation. I am wishing and praying for it to turn out as good as it can be.
To your question, Sara Ann is right on spot, as always! Only a oncologist together with a urologist with LOTs of experience from MANY cases can tell what will be the best treatment for Doug. They will consider all aspects in Dougs case, and use their experience to decide what will be the very best for Doug. The question is tricky, there are a lot of parameters to consider.
No one here can tell you what will be the best for Doug. You have to trust in his doctors.
It is very important to listen to your doctor regarding chemotherapy. Only after you have evaluated all the information very carefully and thoroughly discussed this with your doctor should any decisions be made concerning not undergoing the recommended treatment! One patient's experience may not be at all applicable to another patient.
As for the immunotherapy mentioned by Koolchg (I believe that he is referring to Nivolumab), this is one of several immunotherapy drugs undergoing investigation for a multitude of cancers. There are many reasons why a patient may improve, which may or may not have anything to do with the use of an experimental drug. This is why many clinical trials with many many patients must be conducted before any drug can be considered effective. And these new, powerful agents can have many side effects.
If you are interested, here is the National Cancer Institute's summary of current work on Nivolumab: