Sometimes I forget that new readers come along all the time, and they haven't heard my story. I don't like to repeat myself too much, but I do try to write about some of those experiences, especially my early experiences, when I can.
One thing I haven't written about in a while is Watching and Waiting -- the decision to hold off on treatment until it is physically necessary. I watched and waited for two years (to the day) after I was diagnosed. Some nodes in my left hip got large and they made my leg swell up. I had six rounds of Rituxan, and I haven't needed treatment since (in over 8 years).
Those two years of watching and waiting weren't always easy. I remember, right after I was diagnosed, while we were still doing all of the tests, seeing something online about watching and waiting. I think I read the first paragraph and didn't bother with the rest -- who in their right mind would get a cancer diagnosis and then not do anything about it?
Well, me, I guess. And probably lots of you. It's not an easy decision to make, and it takes a while to be at peace with it. For me, it was worth it. I was able to hold off on treatment, and I have lots of options available to me when I need them -- including a bunch of new ones that weren't around when I was first diagnosed. My Quality of Life has remained good for all of that time. I'm happy I amde the decision I did.
But, as I said, it's not an easy decision.
I just wrote a piece for Blood-Cancer.come called "6 Things I Have Learned About Watchful Waiting," and I invite you to take a look. It focuses on the kinds of emotional juggling that watch-and-waiters have to do while they are observing their disease and considering their options.
The decision is hard, and what comes after it can be even harder. Of the things I learned, the one about talking might be most important. It's not something you can really do alone. For me, talking to loved ones helped, but joining an support group helped most. It was great to hear from people who had been through the process.
So if you're watching and waiting, or you've just been diagnosed, and you're considering the decision, I wish you lots of luck, and a peaceful mind.
Remember it helps to talk. And I'm happy to listen.
Hi Bob,
ReplyDeleteI was diagnosed with Follicular Lymphoma 7 years ago and have been on watch and wait ever since treatment free. CAT scan last month shows my disease has been stable since last scan in 2015, bloods are perfect and as I have no symptoms my next check up will be in a years time.
I am fortunate in that my haematologist who has looked after me since diagnosis is very supportive of the watch and wait approach, saying that treatment for what is still an incurable disease is symptom driven and no clinical study has shown any survival advantage from early treatment. He mentioned that with some oncologists I would be on my third or fourth treatment by now, as watch and wait is not as profitable, so for those of us with private health insurance I think we need to be alert to over treatment.
I am so grateful to have had a treatment free 7 years since diagnosis and my advice to anyone offered watch and wait is take it, as you could be part of the sizeable minority who go well over 10 years on watch and wait and depending on your age profile may never need treatment.
In summary, I get the impression that recently the pendulum has been swinging back towards watch and wait for the majority of newly diagnosed follicular patients who are asymptomatic and not progressors, who in recent years may have been subject to over treatment.
Keep up the good work with your excellent blog.
Robert
Hi Bob,
ReplyDeleteFurther to my comments above, I would be interested if following your six rounds of Rituxan monotherapy 8 years ago you were offered follow up Rituxan maintenance over 2 years. The reason I ask is that following the extensively publicised Ardeshna clinical trials at the University College London Hospital (UCLH) several years ago, where asymptomatic advanced stage follicular lymphoma patients were offered Rituxan monotherapy followed by 2 years maintenance as an alternative to watch and wait, I thought you would be interested to know that apparently new watch and wait suitable patients are no longer being offered by UCLH 2 year maintenance, following initial monotherapy. The reason being I believe is that around 30% to 40% of patients on the 2 year maintenance arm have developed troublesome side effects including enduring fatigue, serious recurrent infections and low white blood counts that required monthly hospital treatment, statistics that were also being reflected in other treatment centres.
I would hasten to add that this does not apply to those having maintenance following chemo, but thought you would be interested as maintenance in this setting was popular for a while following the publication of the Ardeshna study.
Robert
Hi Robert. Seven years of watching and waiting is fantastic. Good for you. I haven't seen anything that shows W & W is becoming more common again, though I did find it interesting that Dr. Leonard, in the interview that I posted a few days ago, did endorse the idea, saying many patients might be able to hold off on treatment. For a while, it seemed like there were new research reports every six months or so that went back and forth -- one saying treatment should start immediately, then another saying the opposite. Obviously, I'm in favor of it for those who can do it, physically and emotionally, so I'm with you in encouraging people to think about it.
ReplyDeleteAs for Maintenance, when I got the Rituxan, I asked my onc about it and he said he wouldn't recommend it because the evidence showed a benefit after R-chemo, but not after just Rituxan. He was great -- his whole philosophy was "Do no harm," so we did the least necessary treatment. I trusted him, and it worked. There does seem to be some evidence that too much R is not a good thing.
Congratulations again on the seven years. I wish you many more.
Bob