Wednesday, June 7, 2017

ASCO: Symptom Monitoring

Well, ASCO is over now, which means pharma companies, universities, and other folks will be sending out press releases to  brag about their big successes at the conference. (And some of them are big success -- some really great news about prostate cancer that I'm seeing online.)

Unfortunately, there were no big blockbuster presentations about Follicular Lymphoma this year. Certainly some good news -- which I have been writing about, and will write a little more about soon. But nothing that has people outside of the Lymphoma community getting all crazy about.

But there were a few sessions that I have seen get discussed online that seem like they could have some implications for Follicular Lymphoma patients, and I want to share my thoughts about them.

The first one has to do with symptoms monitoring.

In this study, patients with advanced cancers were given access to an online program that would let them report any new symptoms. They were asked to report once a week, though they could report things sooner than that if they had problems. Nurses would check the program and provide advice to the patient, sometimes offering an intervention that would help if it was a normal, expected symptom, and sometimes having the patient report to the office as soon as possible, if the symptom seemed abnormal, or a potential sign of the cancer getting worse.

The study involved 776 patients at Sloan Kettering in New York. Researchers found that patients who used this online system extended their survival by about 6 months. That's longer than some actual treatments are found to help. Patients were also able to stay on a treatment for longer than they might have been, because nurses were better aware of their side effects and could help them deal with them more quickly.

The lead researcher on the study appeared in a video at ASCO to explain more about the how it worked.

I can't help thinking about how this would affect Follicular Lymphoma patients.

Many of us are able to watch and wait before we need treatment. Many more able to do the same after treatment. A key part of watching and waiting is looking for symptoms. And for many of us who have an indolent form of FL, growing slowly, we can go a while between oncologists' visits -- 3 months, 6 months, up to a year. If we are in the mindset that things don't need to be reported because we are months away from a visit, we might be more willing to overlook things.

That situation I described is where I am at right now, almost 10 years out since my diagnosis. But I can think of a couple of other situations where a tool like this might be helpful, with some variations.

For patients who are actively going through treatment, reporting side effects would be great, as was mentioned in the study. But also reporting other symptoms, like new swollen nodes, would help alert doctors that treatment needed to change to something more aggressive. (I like to think patients would do that even without an online tool, but I also know patients can sometimes be a little hesitant to "bother" a doctor, and maybe the tool would give them permission to do so.)

The other way this could be helpful would be with fairly new patients. I think back to when I was first diagnosed, and began watching and waiting. Every little bump, every bruise, every ache -- I thought all of it was a sign that my symptoms were getting worse. None of them really were. (I remembering cutting a vacation short because of a sharp pain in my upper leg. I panicked my entire family for what was really just a running injury.) I could see patients in the early stages after diagnosis using that tool and getting reassurance that they were OK.

But that would require something extra from the doctor's office -- some real understanding of the psychology of Follicular Lymphoma patients, which I believe is just a little different from other cancer patients. I've said it lots of times here, and I'll say it again -- Follicular Lymphoma is an emotional disease as much as a physical disease, and doctors need to recognize that.

So if someone newly diagnosed with Follicular Lymphoma, and on watch and wait, was to use this tool, I would hope that the nurses and doctors checking on it would be extra patient with us. They would need to understand that people who hold off on treatment are doubling up on their worries, and act accordingly -- calming our fears and taking our concerns seriously.

(The great majority of oncology nurses and doctors that I have met would do this. But I could see some offices not suing it because of the "extra work" it might bring on. And it would be worth emphasizing those emotional issues in any training that they might receive.)

It would be great if this tool became available for all cancer patients. But even if it doesn't, there's a lesson we can all learn:

Talk to your doctors. Tell them what's going on. 80% of symptoms are found by patients. Not doctors, not blood tests, not scans. But the patients themselves. Even if you don't have a cool online program to help, talk to your doctor.

(Not that I needed to remind any of you about that......)


William May said...

You made a VERY IMPORTANT point, Bob: "80% of [progression] symptoms are found by patients. Not doctors, not blood tests, not scans. But the patients themselves."

For follicular lymphoma progression symptoms I monitor:
* Painless swelling in a lymph node
* Chills/temperature swings
* Recurrent fevers
* Excessive swelling at night
* Unintentional weight loss
* Loss of appetite
* Persistent tiredness and lack of energy
* Breathlessness and coughing
* Persistent itch all over the body
* Enlarged tonsils
* Headache

Shelly said...

Hi Bob, I so agree that this online reporting of symptoms would be an important tool for patients. I'm 1-1/2yr. out of treatment for an aggressive FNHL and although I had a complete remission, I worry about every ache & pain, any change in my body systems. I recently experienced a panic attack because I thought i could feel my spleen enlarging again (which was how I was diagnosed originally). Of course I waited because I knew I would be seeing my oncologist with in a week. By the time I got to see her, the symptoms had dissipated, but I still told her and asked her to ease my mind. Which she did, I'm fine, blood works fine, no unusual lumps and bumps. What a wonderful tool this would be to have the ablity to ask the doctor on line and then maybe I wouldn't have felt so tortured and convinced that the lymphoma was returning to the point of a panic attack.

Lymphomaniac said...

William, thank you as always for the excellent information you provide.

Shelly, I'm sorry you had to go through the anxiety of not knowing. I feel for you. I'm sure we all do. I'm going to keep an eye on what gets done with that online tool. It would be a great thing for us.


harada57 said...
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