Recurrence

[Golfman]

As background, I was diagnosed with Stage 4 SCLC in Feb 2019. Really, a death sentence. They immediately began chemo and included the newly approved (as of January)  immunotherapy drug Tecentriq. Several (3?) rounds of chemo later, I was doing pretty well. Had two pretty nice years. Of course, I had the typical side affects, but really enjoyed myself. Recent scans have shown that this disease has now spread to other locations (i.e. liver and maybe brain, pending a brain scan). On the positive side, I've enjoyed the last 2 years. Probably would not have had them had those smart researchers (Dr Allison) not invented Tecentriq. I'll soon begin new chemo treatment featuring Lurbinectedin. Has anyone had experience with this treatment?

[GaryG]

Sorry to hear that the cancer come back. I hope you will have the desire and strength to beat it again. Sorry I have no experience with Lurbinectedin and from my readings on the web it was just approved in the US on June 2020. I hope one of our members will come forward and share their experience. I wish you the best.

[Rower Michelle]

I'm sorry to hear about this recurrence,  I've always admired your strength and determination as you forged forward.  I'm sure your resolve will serve you well in the next round of treatment.  Keep us posted.  

[D iane]

Golfman, may I ask why your Docs aren't considering the same chemo/immunotherapy again?  I have read that patients with 6 months or longer disease free progression, 1st line treatment may be repeated.

Sorry, I am not familiar with Lurbinectedin but it is for when a platinum based chemo has failed.

A synthetic tetrahydropyrrolo [4, 3, 2-de]quinolin-8(1H)-one alkaloid analogue with potential antineoplastic activity. Lurbinectedin covalently binds to residues lying in the minor groove of DNA, which may result in delayed progression through S phase, cell cycle arrest in the G2/M phase and cell death.

It appears to have been approved in 2020 under the FDA accelerated approval program.  So this is fairly new.

Best of luck to you with the new treatment, and hope your brain MRI is still clear!!

[Golfman]

Thanks to all of you for your encouragement. Luckily, my earlier chemo with Tecentriq stabilized it for 2 years. Then I picture the cancer as becoming immune to my immunotherapy. So now we'll be killing it with the new chemo. No holds barred. We'll kill it, stabilize it again, and press onward. One infusion every three weeks. My understanding is that lurbinectedin is a new second line that seems to be better tolerated. Thank you, D iane. I've posed your question regarding repeating my first line treatment to my onc. and am awaiting her response.

[Golfman]

Discussed all of my options with my Onc as we looked at my detailed history. This showed that Tecentriq lost effectiveness toward the end of my first year. My sclc was then held in check by Taxil. So, it's onward with this saga. Thanks to all of you for your support and advice.

[LouT]

Golfman

I can't give any advice on chemo, but reading your posts, I salute your approach and determination.  Best of all luck to you.  I look forward to hearing your progress in the future.

Lou

[Sillycat1957]

Golfman,

Sorry to hear of your recurrence, but am glad to hear that you have a new treatment plan in place. Best of luck to you!

Take Care, Namaste

Roseann

[Kmc]

Sending you strength Golfman.

[Fox]

So sorry to hear of your recurrence, Golfman. My dad (diagnosed Aug 2020 with extensive, mets to liver and brain) did super well through his 4 cycles of chemo (carbo/etop/tecentriq) and then after the second cycle of solo-tecentriq, they sent him for scans. Bloodwork was all perfect still (unlike at diagnosis, when his liver function tests were atrocious), but the scans showed growth of the primary tumor and some spread to bones.

 

So, he started lurbinectedan last Thursday, the 28th. It has been a ROUGH first weekend. Nausea wasn't too bad, but the fatigue and muscle pain have been terrible. Since he has bone mets, they're also giving him Zometa (a bisphosphonate, like oral Fosamax if you're familiar with that, but given IV with his chemo) and Udenyca (bone marrow stimulant for white blood cells). Basically all 3 of those can cause bone and muscle pain, plus he's got bone mets, so he's very achy and sore. He had a really good day Monday, and then yesterday the backache was really bothersome again. He felt great day 1 when the chemo was administered and pretty decent day 2 (Friday), but then he slept about 18-20 hours Saturday and Sunday. (He did wake up Saturday evening to make some of his famous homemade french fries for us for dinner!) My mum was actually considering taking him to the ER Sunday night because his pulse ox dropped below 90 and he was so tired, but there were driving restrictions here because of the snow. I know anemia is a risk with this new chemo, and my dad struggled with that during initial chemo and had to have a transfusion. But Monday morning he bounced back and felt terrific and even tried to help my mum shovel the driveway! (Which may be related to the backache on Tuesday, but try telling him that haha)

 

I have read on the small cell FB group that many people had issues with the first treatment of lurbinectedan and then did better on subsequent treatments, so I'm hoping that's what happens for my dad. Also, there was an exciting new study out that they are able to do subtyping for SCLC now like they do for NSCLC, so Dad's oncologist sent his biopsy out for that. It may take a few weeks to get back, but I am v interested to see what it says, because that could help guide treatment or indicate a new immunotherapy that might be beneficial.

 

Hang in there Golfman and please let us know how you are doing! Thinking of you in your fight! 

[Golfman]

Thanks to all of you for your support! My first infusion went ok. Fatigue and GI issues rule the day. I take pills for the latter, and am working on becoming a real pro at sleeping. Staying awake is sometimes difficult. They're doing blood tests weekly and all's good so far. I've had no big pain issues yet, and try to get out as often as possible. Even did a wee bit of shoveling snow. My Oncologist said that they would go back to Neulasta if white blood cell count problems occur. Thanks, Fox, for your info on lurbinectedan. Also, It sounds like your dad is surrounded by love from you and your mother. That's outstanding! I'll ask my Oncologist about subtyping tomorrow.

[Fox]

Here's the article I mentioned if anyone is interested:

 

https://www.mdanderson.org/newsroom/study-defines-small-cell-lung-cancer-subtypes-and-distinct-thera.h00-159457689.html?fbclid=IwAR1ZgolCe2iHwrOeEbMFnPwarNZWcsvKRv4Us84aR9kwRbphMM4cmSFIct8

[LUNGevityKristin]

Just checking in to see how you are feeling, Golfman.  

[Golfman]

Thanks for asking. All’s good so far. Scans show stability and and even a little shrinkage in some lung and liver nodes, after 2 lurbinectedin  treatments. I continue with fatigue issues, so I just go with the flow (nap). My oncologist seems pleased. My attitude hasn’t changed, and I can’t wait for golf season. Those smart scientists will, no doubt, continue to produce more solutions for this nasty disease.

[LUNGevityKristin]

Happy to hear you are doing well!  There's someone in my house who also can't wait for golf season. 

[TJM]

Goldman

Been lurking this string. I tell you what tho, if I can get well enough to swing the sticks again, even if just one round, and all of the treatments and stress will have been worth it!

Enjoy the Masters

Tom

[Golfman]

I agree, Tom.  I often even play some holes on familiar courses in my mind while in scans, infusions, etc. And when I'm not feeling well, I'll ride along with my buddies as they play. Maybe I'll just chip or putt or something, until I'm feeling better. The game is a great stress reliever indeed, if you use it to your advantage.

Just playing through

[Jesse L.]

Just read your story out of the blue and and whatever NSCLC story I have pales in comparison to your fight... I wish you the very best that you'll get better and arrest your afflictions well into the future. I hope that very soon you will be able to play through to your hearts content...not my thing but whatever "thing" anyone truly loves is worth fighting for. Hang in there...I'm pulling for you!

[Golfman]

Thank you, Jesse, for your kind words. They lifted my spirits.

[Golfman]

As an update, I've been doing well, actually better than expected. Golfing as needed/required/whenever. It seems that the immunotherapy window is closing on me, so we're moving on to Topotecan. I've also been applying to some clinical trials. Anyone have experience with this drug?

[BrianK]

On 6/30/2021 at 7:14 AM, Golfman said:

As an update, I've been doing well, actually better than expected. Golfing as needed/required/whenever. It seems that the immunotherapy window is closing on me, so we're moving on to Topotecan. I've also been applying to some clinical trials. Anyone have experience with this drug?

Very happy for you! How are things now?

[TJM]

Yes Golfman, over due for an update.

Hope you enjoyed The Open. That kid Morikawa is going to be great. I love that swing..sure looks like it might hold up well over time. He won me my fantasy golf league last year.

Hope your doing well pal. Sorry I missed your last update. Not sure how I did. Unfortunately I dont have much to offer but would love to hear how its working.

Peace

Tom

[Golfman]

Thanks for the kind words. Turns out Topotecan has an affect on the blood. So my Onc is really monitoring that.  Balancing the infusion depending on platelet count. Interesting. Fatigue remains the issue, but that's easily solved by napping. Anyway, we'll keep on this regime as long as it shows some results. In the meantime, golf is a great way to get focused on something other than SCLC. I agree, Tom, that Collin Morikawa will be great for many years. Beautiful swing-not at all like mine.

[TJM]

Dude. I would love to play a round with you. I love and miss golf. So glad your doing well enough to play.

I am REAL close and WILL do it.

Peace

Tom