Thursday, February 16, 2017

Appointment with a New Oncologist

I had an appointment today with a new oncologist. I think I'm going to keep him.😀

First, let me say that my check-up went well. It was the usual -- blood work, a physical exam, and my reporting on how I am feeling. Everything looks great. Blood is normal, I feel fine, and he didn't feel anything weird. I'm good for another 6 months.

Now, a little history, since the focus here is on finding a new oncologist. My first oncologist was Dr. R. I saw him for 8 years, starting on the day after I was diagnosed. I loved Dr. R. He was young, he was well-informed, and he was friendly. I actually looked forward to going to the oncologist. But then he broke my heart and moved to warmer climates, taking a job at a medical school. I miss him. But he seems happy.

After Dr. R, the practice assigned me to Dr. K. I did not like Dr. K very much. He was nice, but he didn't listen, and that was the biggest problem. He seemed to have a rehearsed speech for my visit, and if I tried to tell him I knew about things he was telling me (basic things like what a PET scan was, or the 3 different types of blood cells), he didn't notice or care and just kept talking. During my last visit, he insisted that I get a PET scan. I asked why, and he told me that he didn't think he would find anything on the scan, but he wanted me to get one anyway. I'm a relatively young man with a few scans already under my belt, and I don't think a scan is useful for me at this point, and could actually do more harm than good. But he insisted. At that point, I decided it was time for a new oncologist.

Interestingly, I got a letter from the practice that Dr. K had retired in December, and I would need to find a new oncologist anyway. That might explain some things. He really seemed like someone who had lost interest in the job. As I said, he was a nice guy, and probably had some patients who liked him a lot. But he just wasn't what I needed.

So a month ago, I got a call from the practice. They wanted me to schedule an appointment with Dr. V. The practice I go to is one of about 10 satellite practices for a large teaching and research hospital, attached to a medical school. Most of the oncologists at the satellite practices are clinical oncologists -- their job is to see patients. At the main research hospital, the oncologists see patients, but also do research, conduct clinical trials, and teach at the medical school. Dr. V is one of those oncologists. He works at the main research hospital, and would come to the satellite campus one day a week to see patients.

So I said Yes to an appointment with Dr. V. And I'm glad I did.

Before I describe the appointment, let me say that I know that I am lucky to be able to choose  my own oncologist. I know there are lots of cancer patients who can't choose. Maybe they live an an area with only one oncologist nearby. Or maybe their health care plan doesn't give them a choice. I'm sorry that's the case for people, and I wish it was different. I'm lucky to be in a situation where I can choose my oncologist, at least to some extent.

My visit with Dr. V opened with a review of my current medications. We made some small talk as he looked up my record on the computer (he's a fan of jazz music, and I conveniently have a son who is a jazz musician). As he looked at my medications, he asked why I was taking vitamin B-12. I told him that I had been taking another medication that was causing B-12 problems, but that I had taken myself off of that medication because I was reading about too many side effects. "Well, then maybe it's time to stop taking B-12, too, huh?"

That's a small but important comment. One of the things I liked about Dr. R was his "Do no harm" philosophy -- if there wasn't a good reason for a treatment, or a scan, or some other intervention, then we wouldn't do it. It's what led to my watching and waiting for two years instead of starting on treatment right away. I liked that Dr. V seemed to be taking the same approach.

As we went through my history, that was reinforced. He said he probably wouldn't have given me Rituxan at two years. I explained that I had the Rituxan because of some swelling in my leg, and he agreed that it was a good idea (the notes he had from Dr. K were not very detailed). But that was another example of the n"Do no harm" approach that I liked.

Another example came a few minutes later, when we were discussing my next appointment. He saw that I was getting an appointment every 4 to 6 months. He said, "I really think you could probably stretch this out to a year. We can do 6 months if you'd rather not wait that long, but a year would probably be fine." I said I'd rather do 6 months, which he said was OK. He continued: "I see that Dr. K ordered a PET scan. I'd like to cancel that." I said, enthusiastically, that I was fine with cancelling it. He went on: "We don't do scans like that anymore. Older doctors still believe in surveillance scans, but younger doctors have been trained differently. We worry about too much radiation leading to secondary cancers 20 years from now."

So I was happy about that. He reminded me a lot of Dr. R -- young, friendly, and informed, with a philosophy that matched my own. I was happy that I say him.

But what really clinched it for me was what happened next. We were finishing up, and he asked if I had any final questions. I said, "Yes, just one. As a hematologist, is there anything that excites you about lymphoma treatments these days?"

His eyes got wide, and he said, "LOTS!" 

And then he talked to me for 15 minutes straight about what excited him about lymphoma. It was glorious. He didn't dumb it down. But he explained it well. And I did my best to let him know that I understood and was interested.

He told me that he started out as a leukemia specialist, but he switched to lymphoma because he liked his boss so much. But he was glad that he did, because advances in treating leukemia have kind of stalled, but there are lots of interesting advancements happening in lymphoma.

He went through some of the stuff happening in aggressive lymphomas. The goal with all lymphomas is to move away from traditional chemotherapy, though that's hard to do with aggressive types, which do seem to benefit from chemo. But he did say that there were some exciting trials with Immunotherapies that were resulting in 80% response rates with 20-30% Complete Responses. Then he talked about other indolent lymphomas, like CLL and Mantel Cell, that had some exciting new treatments, like Ibrutinib.

And then he got to Follicular Lymphoma. He said FL was "complicated." The goal, as with other lymphomas, is to move away from traditional chemotherapy. There were lots of treatments out there being tested in trials, with different levels of success. He mentioned Idelalisib, which he was very excited about, but which also showed some severe side effects, leading to some trials being shut down. He was involved with one of those trials, and was unhappy about it, because he thinks Idelalisib shows some promise for Follicular Lymphoma.

He talked about another FL trial he is working with right now. The treatment is called G100, and as he described it, it is a vaccine that is injected into affected lymph nodes in one site of the body. The hope is that the vaccine will train the immune system, and it will then travel to affected nodes in other parts of the body. (I confess that I don't know much about this treatment. It's in phase I/II trials, so maybe it's too early to show any strong results. But I'll definitely keep an eye on it.)

And then he ended by saying that what he really loved about being an oncologist is that he can cure people. He has colleagues who are cardiologists. When someone has heart damage, they can help them, but they can't cure them. But an oncologist can. After my appointment, he was going to see someone who had been in remission for about 10 years. "I look at the scan from when he was diagnosed, and the scan from a month ago....the difference between's like we're performing magic...."

You know how I sometimes post videos of lymphoma researchers who talk about treatments with so much excitement? I had one right in front of me. It was so cool.

That's what I need. And that's what I found.

It was a good visit.


Anonymous said...

This sounds like it was such a positive visit for you: yay!
I'm looking forward to you sharing ever more exciting information.
That G 100 sounds really interesting, let's hope it works !
Thank you for sharing .

Lymphomaniac said...

Thanks, Donna. Yes -- a great visit. I was very happy with what I heard.

Romencar Rodrigo said...

Dear Bob. Why the doctor told you FL is complicated?

William May said...

Hi Bob.
Sounds like you have a great hematologist - glad you found him. Thanks for the detailed update and your process for evaluating a new hematologist - others will benefit from your analysis. To add to what you said, I'd add that patients should have written down questions to ask in advance of their hematologist visit.

Lymphomaniac said...

Thanks, William. It's interesting -- we all need different things from our oncologists. Dr. K, the one who recently retired, told me that he has some FL patients who don't want any details about their disease. As long as things are stable, they'd rather just forget about it. I completely understand that approach. We all handle our cancer differently. (Though I'm guessing people reading this wouldn't want to just not think about it.) Dr. V is what I need right now.
And I agree -- write down questions! Great tip! And have someone come with you, especially if you know it's going to be a stressful visit. Not only can a friend or partner provide emotional support, but they might hear things that you didn't hear. They can even take notes so you can focus on the doctor.
Oncologist visits can really stink. Do what you can to make them just a little bit easier.

Lymphomaniac said...

Romencar Rodrigo,
When he said FL was complicated, he meant that some types of lymphoma are seeing a lot of success with new treatments. But some of the treatments for FL are seeing mixed results. He used Ibrutinib as an example -- in trials, it was working really well on some patients, but had some really bad side effects as well. He didn't mention any others, but you could probably add the ASH concerns about Bendamustine, and some of the sided effects of CAR-T. But I don't see those as long-term problems, necessarily. My guess is that they can be solved by giving the treatment in a different way, now that the side effects are more clear. (But that's just my non-expert guess, based on what I have read, NOT Dr. V's expert opinion).
Still lots to be hopeful about.

Romencar Rodrigo said...

Thanks, Bob!

Popplepot said...

My goal bob was to find a consultant that would go on this journey with me sometimes as the driver and sometimes as the passenger. I'm pretty confident I got that my first consultant wanted to start chemo ( enlarged spleen ) I wanted to try ritux only and found a consultant that would let me try it though didn't believe it would work.
I was stage 3 bone marrow involved with splenomegaly, 4 rounds complete response so very blessed. My Doc said I love it when we are proved wrong. That comment brought great relief, a sense of honesty, and a human side we don't often see from Doctors.
All in All if you ain't happy with a decision get a second opinion if you ain't happy with your Doc change them. And remember the future is brighter than we could ever imagine never ever lose hope.👍

Lymphomaniac said...

Wow, Popplepot -- that's great. Self-advocacy at its finest. Nice that you had an oncologist who was willing to go along with your wishes.
And I'm with you on second opinions. They are always worth the time.
Stay hopeful.