Mixed SCLC - Rova-T and other treatment options? - 1271505

Thanks so much for your reply, Jim. I've printed the links to take to my oncologist tomorrow and hope they will help in finding a good treatment option for me.

One question I forgot to ask is whether having mixed tumors will exclude me from clinical trials, which from what I've read always target either SC or Non-SC but not both. Do you know?

Thanks so much!

Thanks again, Jim. That's pretty much what I thought but will ask anyway.

Dorie

Well, the news was not so great from my CT last week. Both growth and new tumors were found in lungs and lymphs, so after just about 8 months on nivo., we are looking for a new treatment. I should add that none of the tumors is over 2.4 cm, so they are still quite small and my overall health is still very good, with just some shortness of breath on exertion.

My oncologist is to contact the ROVA-T researchers at Duke to see if they are now or soon will enrolling, and whether with my mixed SC-LCNEC I would qualify. In the meantime, we are looking at 3 possibilities that we can start within a week or so. I know you can't recommend specific treatment, but if you have any guidance on pros & cons of these treatments for a mixed NEC, I would be ever so grateful.

1. Topotecan. I believe this is most effective on small cell; not sure about LC

2. Carboplatin + Alimta. My oncologist feels that this may be effective against the LC component, although in a 2012 article Dr. West was not impressed with it for NEC.

3. Gemzar + Navelbine. We didn't discuss this one much, other than that it didn't cause hair loss -- not a factor for me because I like my wig better than my own crazy hair!

Any enlightenment or alternatives you can offer are appreciated.

I hope you all get to enjoy the 4th.

Dorie

Thanks so much, Janine. This was just the kind of information I was hoping for.

I was wondering, though, if you know why topotecan has fallen out of favor. Side effects? Not as effective as other choices?

And when you use the term "neuroendocrine nsclc" is this the same as large cell nec? I hope I'm not being nit-pickey here but the terms get kind of confusing.

Best to you too,

Dorie

Ah, now I understand. Thanks for clarifying that for me.

We got some very encouraging news from Duke yesterday: I may qualify for their ROVA-T trial despite my dual diagnosis. I'm so excited! I think I'll have to be tested for DLL3, but if I clear that I should be good to go.

Even if I don't qualify for some reason, topotecan is still a good choice in a world where there are as yet no cures.

I'll keep you posted.

Many thanks,
Dorie

I just got off the phone with the Duke scheduler and I have an appointment for July 14 to meet with the physician in charge to go over my history, get some blood work done, and then...

I'm pretty sure I learned of ROVA-T through GRACE, so my deepest thanks to all of you for your excellent work and the countless hours you donate to those of us who are plodding and stumbling along this path called cancer.

Cheers to all,
Dorie

Has it really been this long since I updated on Rova-t?

The great news is that I finally qualified and had my first infusion yesterday. The not-so-great news is that it has taken almost 5 months without any treatment to get to this point; a major part of the delay is that the screening brain MRI found a small (5 mm), single brain met which knocked me off the trial path until it was treated.

Oddly, Duke has a whole brain radiation- only policy for SCLC brain mets, although the trial sponsor had no such policy. The Duke team went to bat for me, though, and found an onc. radiologist at a hospital closer to me who would consider doing SRS. I was able to use the information I've gotten from Grace to convince him that focused radiation was the way to go -- in my circumstances. It was a fascinating procedure, complete with a custom-made mask to hold my head steady for the treatment. I also found a new way to pass the time in the MRI machine: Instead of closing my eyes the whole time, I opened them and discovered that tracking the floaters in my eyes was rather zen-like!

I would imagine that most clinical trials are like this, but one of the hardest parts for me is the hurry-up and wait cycle of testing, reviewing, adapting, re-testing, waiting for reviews, inevitable glitches. The infusion itself was a breeze, just 1/2 hour; but of course there were lots of tests before, during and after, for a total of about 5 hours. I was able to drive 1 1/2 hours home without a problem.

Now I just have to watch out for water weight-gain and to take major precautions to avoid serious sunburns. Follow-ups are every 2 weeks, with my 2nd infusion (after another round of CT, MRI, etc) 6 weeks from now.

Now... Is there a way I can change the title of this thread to include Rova-t? It might help others who are looking for information on it. Or perhaps I should start a new thread. I'm glad to spread the word!

Dorie

(Just saw option below on Tags, which I guess might do the trick?)

Thanks for your help, Jim. The title is perfect.

I forgot to mention that even with the months-long wait without treatment, my most recent CT scans showed the lung lesions pretty much stable, with slight growth in mediastinal lymphs and growth from 5 cm to 7 cm in my liver. It seems a little odd to me that the tumors wouldn't all grow at about the same rate, but I guess that cancer knows no rules. I suspect that the relatively slow growth overall is due to residual effects from the nivolumab. I'm just so glad to have whatever it is that is keeping these things from running rampant!

Cheers,
D

Hi Janine,

Thanks for your feedback on the cancer growth patterns. Early on I decided to think of my cancer cells as some wild & crazy guys who just needed some extra help in getting in time with the rest of my body, and it almost feels like that is what they are doing -- in their own time and in their own silly way. I don't know that they will ever disappear, but I'll be happy if we can just live together for however long it lasts. It helps not to think of them as evil invaders, at least for me.

The muscle/joint pain from the nivo. was "cured" after the first couple of doses of 10 mg. prednisone -- pretty amazing. I've had a few flare ups, but a single dose of the pred. has always taken care of it.

My thyroid has been a little more problematic, with TSH dropping to .02 then bounding up to 28 (my normal is about 1.5) and that has given me the wobblies. But the endocrinologist has adjusted my dose and the wobblies are mostly gone, so I'm feeling pretty good about that. He's putting me on monthly monitoring for now.

I do hope others will find my experience helpful. Neither my cancers nor my treatments are common (only 189 in the Rova-t trial, world-wide!), so it is almost magical to find others walking a similar path.

Thanks to Grace and you wonderful moderators for making it possible!

Warmly,
Dorie

I am over the moon!! My latest CT/MRI scans showed a whopping 38% overall tumor reduction! The largest, in my liver, went from 7 cm down to 3.5 cm in the 6 weeks since my first infusion of Rova-t.. Yesterday was infusion #2, and all went well.

I have to admit that I was not expecting anything like this; increasing aches and pains led me to believe that they were all due to progression. But what I found on treatment day (yesterday) was that the steriod dexamethasone -- which is given the day before, the day of, and the day after -- took almost all my discomfort away. It had been due, not to progression, but to high levels of inflammation. Whew! It's so hard to believe that all new symptoms are NOT due to tumor progression, but our bodies don't always see it that way: there are so many things that can affect our health and wellbeing, and we need to try to keep an open mind.

And I think our health professionals need to think about this too. As great as my treatment team is, not one of them understood the inflammation symptoms until I reported their disappearance after the dexameth. Then it was one of those oh-duh moments. Then again, that's what clinical trials are for -- a learning course for all involved. This will be reported under side effects, and perhaps the next Rova person who experiences it will get earlier treatment for it.

Best to all,
Dorie

Thanks, Janine. My main concern now is that I might have to stay on the prednisone for any length of time. I've already gained over 10 lbs, which delights the treatment team but my clothes are starting to protest!

Do you know how I can change the information in that box at the end of my posts? I think I ran out of space when I posted back in April but would like to add stuff about ending nivo. and starting Rova.

I'm glad to have you over the moon with me & hope others can join the group!

Dorie

Thanks for your kind words, Jim, and for the instructions. I guess I'm just too wordy to get all my information in the "forum signature," so I put it in the bio. I may try it again after another cup of coffee or two.

Cheers,
Dorie

Hi Michele,

I'm sorry that your husband is having such a rough time but I'm so glad you've cleared the hurdles and he is on Rova-t. There are, I believe, just 12-15 of us at Duke. Maybe we should start carrying signs so we could support each other face-to-face!

Your husband's course is almost exactly the same as mine, with the exception of bone mets. Will you get the latest scan results today? I join you in hoping for a further reduction.

Has he started on the pre-infusion dexamethasone yet? I found that it relieved almost all my aches and pains, though as I said, I don't have bone mets. For the first time, though, I began experiencing the extreme tiredness that apparently is a hallmark of Rova -- sleeping 15-18 hours the past few days.

I hope the research team is treating your husband's bone pain. They have been very keen to act on the side effects I report -- particularly pain -- but because this drug is so new, sometimes they aren't quite sure how to treat it, like the persistant sun rash I've developed. (Take those warnings seriously!!)

You might also check the Rova-t thread on Inspire. There has been quite a bit of traffic on it, but unfortunately only two of us are actually in the trial.

Do keep us posted, especially with the test results.

Courage!
Dorie