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

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dorie4
Mixed SCLC - Rova-T and other treatment options? - 1271505

Hello! I'm so glad to have found this site. You have such an amazing amount of information and an impressive team of experts.

I was diagnosed in May with ED mixed SCLC (both lungs, one lymph, spleen), discovered very early with largest tumor about 24 cm. As I understand it, they are neuroendocrine tumors.

I received all 6 courses of carboplatin/etopside and followup contrast CT showed complete response for 2 tumors, but one in each lung and the spleen tumor showed little shrinkage.

While there are numerous clinical trials for Non-small cell and a few for Small Cell, my lung oncologist knows of no studies of mixed tumors. He's very well-versed in current trials and treatments but I thought there might be a chance you would know of something waiting in the wings, so to speak, for Mixed SCLC.

The oncologist is recommending that I start on Opdivo, which I understand is approved for Non-SC. Will it have any effect on the Small Cell? Are there options?

I should add that I pretty much sailed through the chemo with few side effects, and for the most part I feel as healthy as I ever have. I'm very,very fortunate, despite a rather dreadful diagnosis.

JimC
Hi dorie4,

Hi dorie4,

Welcome to GRACE. Although mixed SCLC/NSCLC is not that uncommon, since the proportions and amount of spread of the components tends to dictate the treatment used, there don't tend to be treatments specifically geared toward mixed SCLC. Often a treatment is chosen which tends to be effective against both. Dr. Pennell discusses treatment choices in this thread, and you can access a discussion of immunotherapy for SCLC patients here.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

dorie4
Thanks so much for your reply

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!

JimC
I suspect that generally

I suspect that generally would be so, since trial sponsors want to know if their drug works in a particular population, and mixed SCLC would be a pretty small subgroup, and the results of treatment for such patients would be difficult to interpret...was the drug ineffective because of the SCLC or the NSCLC?

But each trial has its own rules, so it couldn't hurt to inquire if a particular trial looks interesting.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

dorie4
Thanks again, Jim. That's

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

Dorie

dorie4
Well, the news was not so

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

catdander
Hi Dorie,

Hi Dorie,

Most often neuroendocrine nsclc is treated a lot like sclc so the decision in a case like this is would appropriately be to stick with drugs like Topotecan which is also very much appropriate for any histology of nsclc. It's fallen from choice not because of proven efficacy, so it would be appropriate.

Gemzar and navelbine is another appropriate choice and proven to have efficacy in both sclc and nsclc (singly or together).

Carboplatin can be very difficult for most people who have cycled through platinum in the recent past (usually less than a year) and alimta doesn't show efficacy in sclc as well as the others.

I hope this helps.
All best,
Janine

dorie4
Thanks so much, Janine. This

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

catdander
Yes neuroendocrine nsclc is

Yes neuroendocrine nsclc is the same as large cell nec of the lung. NEC stands for neuroendocrine carcinoma. The large cell part is a distinction from sclc which is also a NEC (but the cells are small when viewing through a microscope). Other histologies of nsclc are squamous and adenocarcinoma. The good part of the cancer being a mix of sclc and nsclc is that both NECs are treated pretty much the same.

Topotecan is a drug of choice when treating sclc and NEC nsclc. In the following quote Dr. West is referring to Topotecan in nsclc which is mostly adeno and squam histologies.

"As Dr. Pennell noted, it’s not a commonly used choice, but that’s partly because it never really caught on. It (in oral form, which is really equivalent in efficacy to IV) has been compared with Taxotere (docetaxel), which is better established, and a large trial showed that it was quite comparable overall:
http://cancergrace.org/lung/2008/03/01/po-topo-2nd-line-nsclc/
So I think there is reason to think it is likely to be pretty similar to the more established choices, even if it’s not a common choice as a second line therapy for advanced NSCLC." http://cancergrace.org/lung/topic/topotecan-for-stage-4-nsclc-squamous/

I hope that makes sense.

All best,
Janine

dorie4
Ah, now I understand. Thanks

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

JimC
Hi Dorie,

Hi Dorie,

That is good news about the trial. Though ROVA-T is still fairly early in the clinical trial testing process, early results are encouraging, with a significant percentage of participants showing a response. In addition, about 70 percent of those screened for the trial were positive for DLL3. We'll have a GRACE video on ROVA-T coming up soon.

Good luck with the DLL3 testing and trial.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

dorie4
I just got off the phone with

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

dorie4
Has it really been this long

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?)

JimC
Hi dorie4,

Hi dorie4,

So glad to hear you're finally on the trial, and yes there is a lot of testing that goes along with a trial. I hope it helps you a great deal.

I've added Rova-T to your thread title; if you'd prefer a different title just let me know.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

dorie4
Thanks for your help, Jim.

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

catdander
Hi Dorie,

Hi Dorie,

I'm so glad to see you're being cared for so...methodically. :) There are a lot of checks and balances to the process and likely the best care one can get. I know from my husband's experience and others here on Grace the cancer center is the last place you want to be. Thank you for being a part of furthering the understanding of cancer, that's pretty huge on its own.

It's not that unusual to see different growth patterns among one person's cancer tumors. Like you said cancer will do what it wants. It's most likely due to the changes the cancer goes through as it moves. Yours' has already shown that in your diagnosis of large and small cell histology.

It is unusual for lung cancer especially especially sclc so it's probably due to nivo. That could go on for some time and I hope it does! I'm glad you want to find others with whom to share experiences.

How is the muscle and joint pain? Has it subsided? Hope so.

Janine

dorie4
Hi Janine,

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

dorie4
I am over the moon!! My

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

catdander
Dorie, Congratulations! It's

Dorie, Congratulations! It's great news! Really great all around. Anti-inflammatories for muscle/joint pain, I'm so glad you've gotten over that nasty bump in the road. :)
I'm over the moon with you tonight :)
Janine

dorie4
Thanks, Janine. My main

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

JimC
Hi Dorie,

Hi Dorie,

I join Janine in being over the moon on your good news! Thanks so much for sharing.

To edit your signature, while logged in click on your screen name to the left of one of your posts. On the screen that comes up, click "Edit Profile Bio & Forum Signature". On the next page, scroll down to your signature and make your changes (it's a good idea to save the signature text in a file, in case a site glitch or update resets it), then be sure to scroll all the way to the bottom of the page and click "Update". Your revised signature should appear on all your posts - past, present and future.

Looking forward to many more great updates,

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

dorie4
Thanks for your kind words,

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

catdander
Yeah, the word limit

Yeah, the word limit definitely forces a focused view on the subject.

michelez
Hi All,

Hi All,

I'm a new user, very glad to have found this site. My husband has extensive SCLC, with mets to lymph system, bone & liver.

8-2015 Diagnosed with extensive SCLC, given 6 rounds of chemo.
1-2016 no visible cancer
2-2016 cancer was back, chest radiation & whole brain radiation. More chemo.
4-2016 chemo didn't work. Tried a different chemo, didn't work.
5-2016 tried Opdivo. Not approved for SCLC but we tried. Didn't work.
8-2016 applied for Rova-T clinical trial at Duke.
9-2016 lots of test, brain MRI showed metastasis to the brain. Treated with SRS.
10-2016 1st dose of Rova T. Visible tumor is no longer visible.
11-2016 he had new scans, still waiting for results. 2nd dose later this month.

So glade to read Dories post. We see the reduction in the tumor but he is so tired all the time and has terrible bone & joint pain. We are on pins & needles, he had new scans last Friday at 7:00. Can't wait to hear fee results. Common sense tells me we will see a reduction and he is feeling so bad because his body is fighting.

Thank you for your post. I wish you all the best.

dorie4
Hi Michele,

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

JimC
Hi michelez,

Hi michelez,

Welcome to GRACE. I am sorry to hear of your husband's diagnosis and the trouble he has had finding an effective treatment. I hope that Rova-T continues to work well for him.

As far as his bone and joint pain, it may be good to talk to his oncologist about a PET scan, bone scan or MRI of a specific location, to see if the previously-seen damage caused by bone mets might warrant radiation or other interventions in an effort to ease that pain.

Good luck with the scan results.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

michelez
It's been awhile since I last

It's been awhile since I last posted.

My husband had an overall 35% reduction after his 1st treatment of Rova-t. His 2nd dose was in late November, we had new scans yesterday. We are still waiting on the final results but initially there was no change in the cancer. Bad news was minimal reduction, Good news is there was minimal growth. Not sure how to take this news but still hopeful and ready to FIGHT!

We are scheduled to see a Pulmonary Disease Specialist next week for the plural effusion. He is having swelling and pain in his upper legs, they did ex-rays and ultrasound yesterday. We don't have the results yet but he's home so that's a good sign.

I am praying that the lack of reduction in cancer doesn't mean his cancer is resistant to Rova-t. I think this is our last option...Prayers requested.

Next set of scans in 6 weeks. February 9th. They will decide if he gets a 3rd treatment.

8-2015 Diagnosed with extensive SCLC, given 6 rounds of chemo.
1-2016 no visible cancer
1-2016 2 weeks later cancer is back
2-2016 chest radiation & whole brain radiation. More chemo.
4-2016 chemo didn’t work. Tried a different chemo, didn’t work.
5-2016 tried Opdivo. Not approved for SCLC but we tried. Didn’t work.
8-2016 applied for Rova-T clinical trial at Duke.
9-2016 lots of test, brain MRI showed metastasis to the brain. Treated with SRS.
10-2016 1st dose of Rova T.
11-2016 35% overall reduction in tumors. 2nd dose of Rova-t.
12-2016 Scans for results of 2nd does of Rova-t. Little to no reduction in tumors in liver. Still waiting on results from lung scan.

Happy New Year
God Bless us All

catdander
Stable is an excellent result

Stable is an excellent result. So CONGRATULATIONS! I hope they find an easy solve for the pain and swelling and the PE.

I will keep you both in my thoughts.
All best to you both,
Janine

P.S. Don't forget to do or let someone else do something special for you. :)