Reunions and Infusions

Since my last post I have attended my 35th college reunion and gone for my first immunotherapy-only infusion session. 

I am so glad I was able to make it to my 35th! When I first got my diagnosis and started treatment, I was not at all sure I would make it to reunions; even as late as the previous night I was afraid I wouldn't be up to traveling. But I did manage it, with the help of some extra anti-nausea medication. 

It was very good to see old friends at the 35th and even make some new ones. For those reading this who were also there: I'm so glad I got to see you! Thanks for all the hugs and good wishes. If I gave you a card but didn't get a chance to chat, do flip the card over and read the back, which briefly describes my diagnosis and research fundraising page. (There seems to be a problem with the page accepting cards from people who are not in the US. I've submitted an inquiry about this.)

At various points during reunions weekend I chose the less physically demanding option for a given activity, and I was very glad I did. I brought a lightweight camp chair to sit on during the P-Rade (not a typo, that's what it's called), and I rode a golf cart when it was my turn to join in. All three of us carried signs in support of research and higher education (pictured). I returned home Sunday tired but triumphant.

At the P-Rade, standing up for higher education (photo by Gita)

Then on Tuesday I went for my oncologist's appointment and immunotherapy. My oncologist says I'm "looking wonderful." That's always nice to hear (and too rare!), but in the current context it is particularly reassuring. 

The immunotherapy infusion went smoothly and very quickly compared to the multi-hour ordeal of chemotherapy. Now I can expect to be very tired for several days, but hopefully after that things will be better. As I continue on the immunotherapy, I may get an autoimmune disease or lose thyroid function as a side effect; but we'll cross that bridge when we come to it. Strangely, side effects with immunotherapy are correlated with good outcomes in terms of the cancer. It's another sign of how disruptive this cancer has been to think that an autoimmune disease would be good news! I'm holding out hope for a good response without autoimmunity, though—as well as for making it to my 40th reunion.

Gratitude and Giving

Now that I've finished my round of doctor's appointments for the moment, I can turn my attention to how to spend something I now have more of than I thought I would when I started this cancer journey: 

Time. Life.

I am immensely grateful to the smart doctors and kind nurses who have given me this gift. I am also deeply grateful to other members of my team: Anand and Gita here at home, and all of you out there who have sent care and support.

There is another group of people I want to acknowledge now, and that is the scientists who made the breakthroughs that have made the treatment possible. Keytruda, the immunotherapy I'm getting, was approved for mesothelioma in the US only in September of 2024. Two other immunotherapy drugs, ipilimumab and nivolumab, which are given together, were approved for meso in October of 2020. They were the first new treatments approved for mesothelioma in 16 years.

The specialist I saw on Tuesday says that a number of her patients on immunotherapy have been stable for several years now. This is what I am hoping for for myself, and it is a big change from the years before 2020, when the average life expectancy for a mesothelioma patient was only about a year. 

These immunotherapies are examples of what cancer research can accomplish, and hopefully there will be more treatments coming along soon that can actually cure mesothelioma rather than just keep it quiet for a few years. 

I want to be part of the solution, whether it comes in time for me to benefit from it or not. I have set up a fund-raising page (at this link) at the Mesothelioma Applied Research Foundation. The foundation sponsors seed grants for scientists who are exploring new ideas in mesothelioma research. Once an avenue of research is up and running and producing results, it is often much easier to get funding from government agencies (or it used to be before government spending cuts). But someone has to fund the early research as well as encourage young scientists to go into the field of mesothelioma research, and this is where the Mesothelioma Applied Research Foundation comes in. They give two-year grants of $50,000 per year to help scientists get their meso research underway.

The foundation also provides other help for mesothelioma patients, including the online support groups that I attend and a travel grant program for patients who need to travel to seek medical help but cannot afford to do so.

I'm looking to raise $25,000, which is half of a year's grant. More would be even better! I've made an initial modest donation myself to get the ball rolling, and I will add more when ten people have donated or I get back from my upcoming college reunion, whichever comes later.

The page to donate is here. If you don't want your name displayed in the donor's box at the right of the page, I think you can specify that you want to remain anonymous. 

Thanks in advance to all who are able and willing to give, no matter the amount!

Specialist Visit

I've just gotten back from a visit to the mesothelioma specialist at Johns Hopkins. Like my local oncologist, she is very positive about how well I've responded to treatment. Her advice is to simply stay on the immunotherapy for two years or for as long as my system will tolerate it. 

She doesn't particularly recommend surgery. In her experience, patients who respond well to immunotherapy do pretty well on that therapy alone, and surgery does not usually add any benefit for them. Unfortunately, there are no very long-term studies to look at in this regard because immunotherapy for mesothelioma is quite new, particularly the drug I am getting (Keytruda/pembrolizumab). Nevertheless, she says she is seeing patients maintain a stable level of disease (in other words, with the cancer not progressing) for some number of years with immunotherapy. 

Hopefully that will be me! 

Mesothelioma is a wily beast, though, and has a nasty tendency to come back. Hopefully there will be yet more treatment options available by the time mine does.

In the short term, I am hoping that my fatigue and general malaise levels will continue to drop as I get further past the chemo. Fatigue is a major side effect of immunotherapy, though, so that may be too much to expect.

Meanwhile, for those who might wonder how my chemo plants are doing, they are all thriving. Three of them are on my deck where the deer can't get to them, but even the Canterbury bells out in the front bed are doing well. To protect them, I surrounded the bed with various garden trellises (after which I had to order some more for my beans and cucumbers) with the reasoning that although deer can jump just about any fence, they are reluctant to jump into a space if they can't see a good place to land. With my peach tree at the center of the bed, there's not much space for a landing. 

Chemo plant tree rose: flourishing

The trellises blend in with the background vegetation, so while they are a bit of a hodge-podge, they're not too ugly. I also hung soap slices in little mesh bags from the trellises, and I'll admit that that is ugly. However, I found a scientific paper reporting on a controlled study that showed that deer are at least somewhat repelled by tallow-based soaps. So I'm elevating science over aesthetics.

Soap bags: science over beauty

So far my deer-repelling system is working. There is plenty of food for the deer elsewhere, so they are eating that for now—including a few beautiful lupines I put in this spring. If we have a drought later this summer things may be a bit more difficult. For now, though, the chemo plants and I are both declaring victory.

Update from the Surgeon

My heartfelt thanks to all who have commented or otherwise messaged me to rejoice about the news of my being in partial remission. I went back and read the report from my January PET scan, and the difference between that one and the recent one is indeed huge.

The unexpected degree of this good news was to some extent overshadowed last week by the fear that I would now be told I should have a very major surgery. Alternatively—which was perhaps worse—I feared that some of my doctors would say I should have the surgery and some would say I should not, leaving me with a terrible decision to make.

It did not in fact turn out that way.

On Friday I saw the surgeon, and he says the "pleurectomy and decortication" surgery (P/D) is not for me, partly because of how well the treatment has been working and partly because of where my tumors are or were. So I do not have to have major, mutilating surgery. Whew!

Instead, it may make sense for me to have a much smaller "debulking" surgery, which would aim to reduce the size of the remaining tumor—if an initial exploratory look confirms that it could be done pretty straightforwardly. The surgeon also said that because of my unusually good response to the treatment, which is based on an immunotherapy drug (Keytruda) which has only recently been approved for mesothelioma, we are in a "data-free zone." In other words, we are pretty much making this up as we go along. That could be disconcerting, but it is for such good reasons that I am taking it well.

We'll go see the specialist at Johns Hopkins next week and see what she says about the debulking surgery and any other steps I should be taking other than continuing the Keytruda on schedule.

Meanwhile, I had a quiet but happy Mother's Day yesterday. It was so good have positive medical news to celebrate and to have Gita (and her cats!) with me for the occasion. (For anyone who wants to know more about our trip to Chincoteague and Assateague, Gita has a lovely blog post on the subject. And for anyone who is interested in going there themselves, bring bug spray! The mosquitoes were legion.)

So grateful for Gita on Mother's Day

Good News

Yesterday we got back from Chincoteague and Assateague. It was great to get away and have some distraction from worrying about my PET scan results. Even so, I found myself getting anxious as I would try to settle down to sleep at night. Finally I hit on a mental routine that went something like this: "I am anxious. That means I am alive, which is what I am anxious about. So I will embrace feeling anxious as a part of this precious thing called life." That actually helped.

Saying hi to a re-domesticated Chincoteague pony

Upon returning home, we went out again almost immediately, this time to see my oncologist and learn about the PET scan. Rationally, we had expected the news to be at least somewhat encouraging, since I have regained weight and strength while on chemotherapy and my oncologist was optimistic. But expectation and certainty are two different things, and anxiety thrives in the gap between them.

However, the news was even better than we expected: most of the tumors are gone! The largest one is still there but is smaller and is much, much reduced in activity. 

This puts me into the category of "partial remission." It's not full remission, but it is a major step forward. To put this in perspective, remission in mesothelioma is rare, though a bit less so nowadays with immunotherapy.

We are still trying to take in the good news.

What does this mean for my future, you ask?

Most importantly, it means I will have more of one than if the results had been less promising. How much more remains to be seen. Not only is this partial, not full, remission, but mesothelioma is a particularly nasty cancer that almost always comes back from remission within a few years. I remain hopeful, though, that since I responded so well to the new treatment combination I was given, I may yet be able to achieve long-term, full remission or at least be able to keep it at bay for long enough that even better treatment options come along. There are some hopeful treatments in clinical trials now.

In the very near term, it means I'll be consulting with the surgeon and the mesothelioma specialist (and maybe additional people in each category) to see if surgery is the best option for the remaining tumor. Either way, I'll be staying on the immunotherapy (with perhaps a pause for surgery) indefinitely. That in itself may bring some more improvement.

Scanned

On Tuesday I had my PET scan. PET scans are marvels of modern science. First they inject you with radioactive glucose or fluorine (glucose in my case). That circulates through your bloodstream and gets taken up most hungrily by the overactive—that is, cancerous—cells. Then the radioactive atoms in the glucose decay, and the resulting release of radiation is picked up by the scanner. That tells them where your cancerous tumors are and how active they are.

As a result of this, I was slightly radioactive on Tuesday afternoon. For a few hours after leaving the radiology lab I was supposed to avoid small children, pregnant women, or, ironically, pets. 

This was me.

To be honest, I'm now getting anxious about the results. How much better did the chemo really make me? Will the immunotherapy be able to cope with what's left—and for how long?

And then there's the big question that I will soon be grappling with: Should I have surgery? The surgery for pleural mesothelioma is no joke. It's better than it used to be, when they would take out the patient's entire lung. Now they take out a rib, the lining of the lung (the pleura), and any other parts, like bits of the diaphragm, that the tumors have invaded. It's still pretty damn major surgery.

The real dilemma, however, arises from the fact that medical opinion is divided as to whether the surgery is helpful in the long run. Getting rid of the tumors seems like a good idea, but disturbing the tissues and causing inflammation can actually speed up the process of metastasis. Many mesothelioma patients are too old to consider surgery, but at my age I may be a good candidate, depending on what the PET scan tells us. If I am, this is going to be a very difficult decision. The various oncologists I'll be seeing in the next couple of weeks will have valuable input; but from what they have already said, I don't think they're going to have a unified opinion. 

So it will be up to me to make the call. 

Yikes.

First, though, I'm spending time in the garden today (planting my Canterbury bells), and tomorrow we are going to Chincoteague to see the wild ponies, the birds, and the ocean.