MyHubsSCLC

[KathieF]

I’ve been scouring these forums and others for a few weeks and decided I should start posting while we are in an ok place.  My husband lost his voice around the end of January 2021 and this journey of SCLC began.  We were both heavy smokers.  Quit in 2010 and practiced vaping.  

DR - mid Feb - if voice is not back in 2 weeks, see ENT 

ENT - Scope in office - Left Vocal Cord is paralyzed  - why? Sent for CT Scan

3/1/21 CT Scan - referred to Oncologist  Medial Left upper lobe mass 4.9 cm x 3.6cm x 5.7 cm Left Hilar 2.1 cm x 1.7 cm  gastrohepatic/porta 4.3 cm x 3.7 cm, 5.1 cm x 4.1 cm x 5.1 cm myleolipoma

3/17/21 Bronchoscopy and EBUS - Left upper Lobe Mass Small Cell Carcinoma; Hilar Lymph Node Small Cell Carcinoma, Foundation One Biomarker testing done

4/1/21 Started Treatment: Etoposide, Carboplatin, Atezolizumab every 3 weeks for 3 days max 4 rounds (ended chemo on 6/4/21) Continue on Immunotherapy Atezolizumab only 6/23/21 every 3 weeks.  ALL blood work has been fine!  No significant side effects! Hiccups in beginning of Round 1 & 2 with complete hair loss.  Peach fuzz growing back and mustache back in full shortly after chemo ended.  

4/13/21 PET  Scan:  Medial Left Upper Lobe 4..5 cm x 3.5 cm in PET SUV 12.4; Left Hilar Lymph Node SUV of 6.7; Lymph nodes on liver and midline liver and right Adrenal 6 cm x 4.5 SUV 16 cm  Brain: Clear

6/21/21 PET Scan: Prevascular Mass 1.8cm x 3.2cm SUV 15.8; Left Hilar Lymph Node decreased in size,  SUV 5.8; right adrenal gland mass 4.6cm x3.8cm likely myelolipoma; Lymphadenopathy in gastrohepatic & porta hepatic region 4.4 cm x 5 cm SUV 27 Brain: Clear 

Foundation One results: Small Cell Undifferentiated Carcinoma MS-Stable, TMB 11 Muts/Mb; PIK3CA; KEAP1; MYC; RPTOR; TET2; TP53 

 

[Dona]

On 7/28/2021 at 7:49 AM, KathieF said:

I’ve been scouring these forums and others for a few weeks and decided I should start posting while we are in an ok place.  My husband lost his voice around the end of January 2021 and this journey of SCLC began.  We were both heavy smokers.  Quit in 2010 and practiced vaping.  

DR - mid Feb - if voice is not back in 2 weeks, see ENT 

ENT - Scope in office - Left Vocal Cord is paralyzed  - why? Sent for CT Scan

3/1/21 CT Scan - referred to Oncologist  Medial Left upper lobe mass 4.9 cm x 3.6cm x 5.7 cm Left Hilar 2.1 cm x 1.7 cm  gastrohepatic/porta 4.3 cm x 3.7 cm, 5.1 cm x 4.1 cm x 5.1 cm myleolipoma

3/17/21 Bronchoscopy and EBUS - Left upper Lobe Mass Small Cell Carcinoma; Hilar Lymph Node Small Cell Carcinoma, Foundation One Biomarker testing done

4/1/21 Started Treatment: Etoposide, Carboplatin, Atezolizumab every 3 weeks for 3 days max 4 rounds (ended chemo on 6/4/21) Continue on Immunotherapy Atezolizumab only 6/23/21 every 3 weeks.  ALL blood work has been fine!  No significant side effects! Hiccups in beginning of Round 1 & 2 with complete hair loss.  Peach fuzz growing back and mustache back in full shortly after chemo ended.  

4/13/21 PET  Scan:  Medial Left Upper Lobe 4..5 cm x 3.5 cm in PET SUV 12.4; Left Hilar Lymph Node SUV of 6.7; Lymph nodes on liver and midline liver and right Adrenal 6 cm x 4.5 SUV 16 cm  Brain: Clear

6/21/21 PET Scan: Prevascular Mass 1.8cm x 3.2cm SUV 15.8; Left Hilar Lymph Node decreased in size,  SUV 5.8; right adrenal gland mass 4.6cm x3.8cm likely myelolipoma; Lymphadenopathy in gastrohepatic & porta hepatic region 4.4 cm x 5 cm SUV 27 Brain: Clear 

Foundation One results: Small Cell Undifferentiated Carcinoma MS-Stable, TMB 11 Muts/Mb; PIK3CA; KEAP1; MYC; RPTOR; TET2; TP53 

 

Hi Kathi

THANK YOU for your response to my post. I am so so sorry about your husband's dx, but I'm amazed at how quickly they started the actual treatment after the EBUS! That's wonderful!

I want to hear all about his progress as it will give me hope and also the information I'm hungry for about this rarer type of LC. I'm past the WHY ME on LC, now kinda in the WHY COULDN'T IT HAVE BEEN the more common and treatable NSCLC?

My timeline so far

July 5 - coughing up blood, shortness of breath 

July 13 - chest xray - 5.7cm mass found RLung

July 15 - non contrast CT scan - 5.2x5.5cm mass confirmed RLung

July 21 - CT biopsy scheduled at local community hospital - they cancelled due to low kidney EGFR on previous blood panel (levels since are back to my "normal".)

July 21 - transferred my care from the community hospital to one of the top 50 cancer centers in the US, UC Davis Comprehensive Cancer Ctr, Sacramento.

July 22 - met with pulmonologist who fast tracked me for EBUS.

July 29- EBUS. 4.1x5.0cm .Tissue off for biomarker testing,but preliminary dx SCLC. 

In summary, I am shell shocked and yes more waiting til I can actually start fighting this crap, BUT PLEASE keep in touch and keep me/us posted on your husband's 'journey' and perhaps we can help each  other through this.

Dona

[KathieF]

Dona,  Absolutely!  From what I have seen, SCLC is more rare and it’s hard to find people who have gone through the experience.  When we first learned about it and didn’t know the difference, our pulmonologist said its like naming one of your kids Bob and the other Not-Bob.  The waiting is VERY hard.  The treatment is pretty much standard of Carboplatin/Etoposide plus immunity.  I would think your oncologist would start you pretty quickly.  We kept waiting for the dreaded side effects but with the medications that they gave in the infusion, he didn’t get any nausea at all.  We had filled all the prescriptions they had written and he never needed one of them!  How are you feeling?  Scott had pretty severe pain in his neck/shoulder that we still are not sure if it was related but the fact that it went away completely after one round of chemo makes me think it was.   I am glad to hear you are getting treatment at one of the top cancer centers.  Yes, let’s definitely compare notes and we can help each other through this! 

[Dona]

Kathie, thx for the reply.

U mentioned yr husband's 1st line treatment was chemo every 3 weeks, 3 days at a time. Was he in the hospital those 3 days or was it basically come in each day for the infusion? I imagine my initial treatment will be similiar to his.

I go to my pulmonologist  Aug 4 to hopefully go over the biopsy results from他EBUS.   Because his office is in the cancer ctr I'm hoping an oncologist will meet me as well. I want to get started on this!

How are your husband's spirits? Hopefully he's keeping his chin up thru this and I'm sure your support plays a major part.

Have u considered getting tested yourself, since u both were smokers? I believe insurance will cover tests for high risk individuals.  LC seems to present symptoms once it has progressed. 

Take care and keep in touch!

Dona

[KathieF]

Hi Dona, 

I believe when we first got the results of biopsy we met with the Pulmonologist first and then the oncologist separately the next day, but his are in different buildings. Once they get results I’m sure they will get you in to start treatments within the next week. I totally understand wanting to get started! Waiting is the difficult part.  All his infusions were done in the Cancer Center, outpatient.  The first day we would meet with the oncologist, he would get blood work and all 3 drugs were infused so it was the longest day (about 4 hours).  The next 2 days the infusions went much faster and we would only be there about 2 hours.  He felt fine afterwards and would walk around the parking lot for exercise.   

I think both of our state of minds have been a roller coaster.  I am the talker, planner, research gatherer and he keeps everything in, but that’s always been us.  In between treatments what he really enjoyed doing was planning our next camping adventure!  He started a YouTube channel “Truck Camping Living Life” and has been teaching himself how to upload and splice together some of our trips.  Unfortunately we had to cancel the last one as our weather is getting too unbearable with the heat and humidity and it affects his breathing.

On my recent visit to GP, she discussed the joy of turning 50.  She did suggest LC screening along with the magic colonoscopy year and of course add menopause to the mix…ha! 

 

[Dona]

Kathie

How is your hubby doing? I've been thinking of you.

Dona

 

[KathieF]

Thanks Dona!  Scott is doing well on Immunotherapy every three weeks.  His next scan will be Sept 20th.  Praying for continued results!  He also did get Moderna’s booster shot which seemed to have more effects than the first two shots.  I’m hoping that means he has now mounted a better immune response to the vaccine.  Have you been able to start treatment?  How are you feeling?  

[Dona]

Kathie so happy to hear about Scott's progress! Which immuno drug is he on and what is the duration?

I start treatment next Monday, protocol:  1xweek low-dose Taxol/Carboplatin 5xweek targeted radiation  for 6 weeks.

My breathing has gotten worse, shortness of breath more common without exertion. I believe this may be.in part to the large wildfire that occurred here 3 weeks ago, the Caldor Fire. I was evacuated for 2-1/2 weeks and the air was extremely hazardous.  Was coughing up blood for a good while, but it since has returned to clear (my poor lungs are trying hard to get the toxins out,lol).

What I should mention is that my initial dx was SCLC, then after more stains were reviewed,  dx changed to neuroendocrine,  then once again changed to NSCLC. They just cannot definitively tell me if it is a primary LC or uterine met from 2000 cancer. But I'm told the treatment would.be the same for either cancer.

I am so looking forward to treatment to get this nasty thing taken care of.

Again, so happy Scott is.responding well! Keep us updated!

p.s. not sure if I want the booster. On the fence. Onco suggests it, I'm not convinced I need it, or if it's safe. 

Dona

[KathieF]

Scott has an infusion every three weeks with atezolizumab (Tecentriq).  He was originally on Etoposide/Carboplatin and little to no side effects!  I hope it does well for you too.

I’m sorry to hear about the shortness of breath. I’m sure the fires only add to the stress of all that is going on for you.  My understanding is Small Cell Lung Cancer is also a neuroendocrine tumor.  I wonder if it is mixed SCLC & NSCLC.  Either way - Yes!  On to treatment to get the nasty thing gone 💥 

He was on the fence about the shots and booster but I feel a little safer as a daughter works around a lot of people and don’t want to risk a cold, never mind covid…..funny thing is, our Onc never even brought up the vaccine in any of our talks! 

 

[Juliet]

Hi I have just been reading your posts and thought I would come on, I live in UK and my mum has just been diagnosed with sclc. She had an operation in Feb to remove the tumour and that was successful, in August had an Mri and that's when the news of her lung cancer had spread to her liver,  although her lung is now clear . They gave my mum a time prognosis but I just can't accept that, she's fit and well amd starts treatment tomorrow of carboplantin, etoposide and immunotherapy all together.  I'm praying this helps and works to shrink the tumors , I hope your husband is doing well and responding well to treatment. Love and thoughts 

Julie 

 

[BridgetO]

Hi Juliet and welcome. I'm sorry to hear about your mom's cancer.  As you probably know, SCLC is a harder cancer to manage than NSCLC. That being said, time prognoses are pretty much inaccurate. There are a lot of us on here that have outlived our prognoses, and I don't think doctors give time expectations often any more. Treatment options are increasing all the time. 

I don't have any specific information about liver mets, but perhaps someone else on these forums has and will respond. I encourage your mother (and you, too) to enjoy being fit and well. Hang in there and don't give up hope.

Bridget O

[KathieF]

Hi Julie,  I too am sorry about your Mom’s diagnosis.  Scott has had a pretty good response to Carboplatin/Etoposide + Atezolizumab.  At the beginning of his diagnosis he wasn’t able to speak clearly because of a paralyzed vocal cord from tumor pressing on a nerve.  By round 4 his voice came back and I’ve never heard a sound so great!  My understanding is that SCLC typically responds very well to the first course of treatment.  Was your Mom diagnosed with Limited in Feb when she had surgery?  I ask because he was not a candidate for surgery or radiation due to it being Extensive when found. 

[Juliet]

22 minutes ago, KathieF said:

Hi Julie,  I too am sorry about your Mom’s diagnosis.  Scott has had a pretty good response to Carboplatin/Etoposide + Atezolizumab.  At the beginning of his diagnosis he wasn’t able to speak clearly because of a paralyzed vocal cord from tumor pressing on a nerve.  By round 4 his voice came back and I’ve never heard a sound so great!  My understanding is that SCLC typically responds very well to the first course of treatment.  Was your Mom diagnosed with Limited in Feb when she had surgery?  I ask because he was not a candidate for surgery or radiation due to it being Extensive when found. 

Hi Kathie, yes it was limited in Feb when found and she had the surgery which was a success and was told they had removed all the tumour, she then had chemo afterwards to mop up any cells that may have been present , in August thats when she had her scan which revealed liver mets but nothing anywhere else . They told her she had 3 to 4 months to live or 12 months with treatment,  the oncologist was very matter if fact and she had no one with her at the time .  I'm just praying 🙏  it works the treatment.   Xxx

[KathieF]

That is heartbreaking that she was told that and especially all by herself.  I know as a daughter it is terrible to imagine how she must feel.  I continue praying too.  We all need BIG miracles.  ❤️

[Juliet]

11 hours ago, KathieF said:

That is heartbreaking that she was told that and especially all by herself.  I know as a daughter it is terrible to imagine how she must feel.  I continue praying too.  We all need BIG miracles.  ❤️

Thankyou for your kind words and hope your husband is doing OK  xxx

[KathieF]

We got the results of Scott’s PET and we are devastated to learn there is already progression.  The left Hilar reduced some but the left lung mass and porta hepatic region have increased and there are 2 new areas as well.  One on his right vocal cord and the other base of skull/cervical.  I am EXTREMELY concerned about the right vocal cord because during his original diagnosis his left vocal cord was paralyzed due to tumor pressing on his RLN.  He was given the option to start a clinical trial at the cancer center he is currently getting treatment at. It is called Keynote B98 and it will be a randomized trial of 4 arms.    On Monday they will do further bloodwork and Brain CT to make certain he qualifies for this trial.  I’m floored that the PET he just did, didn’t include his brain.  It’s been 5 months since they have checked and it seems too long for my liking with the knowledge that SCLC spreads quickly there.  Nothing at all has been mentioned about radiation to any of these areas.  Is that unusual or are they just waiting  for it to be symptomatic?  His greatest fear is unrelieved pain and or choking.  I want so badly to be able to relieve those fears for him! 

[Tom Galli]

Kathie,

I'm sorry about Scott's PET results. In my treatment history, I can recall only 2 brain scans (CT scans of the brain): first during initial diagnosis and the second about a year after my first NED scan. I had to ask my oncologist for the second brain scan, and we had difficulty getting my insurance to cover the second brain CT. My doctor explained my flavor of lung cancer required neurologic symptoms before a brain CT is "authorized." My lung cancer is NSCLC Squamous cell. It can spread to the brain but brain mets are not typical. They are for small cell and I can't offer a reason why Scott's PET scan didn't cover his brain. I do hope the forthcoming scan rules out brain mets. He's got enough on his plate!

Have you had a consultation with a radiation oncologist? Unfortunately, there are stove-pipes in the lung cancer treatment community. Some practitioners "stay-in-their-lane" when it comes to suggesting treatment. Along with trial diagnostics, I suggest a radiation oncologist consultation to learn the feasibility of this treatment for all his mets.

I knew a five-year survivor who had difficulty with swallowing and choking despite multiple cycles of chemotherapy. He had a consultation with a radiation oncologist and had Stereotactic Body Radiation Therapy (SBRT) to the offending tumor in a lymph node high up in his throat that was causing the symptoms. There were side effect risks associated with this treatment but the treatment did eliminate swallowing problems. And his quality of life was improved as a result of this treatment.

I hope this helps.

Stay the course.

Tom

[KathieF]

Interesting. Scott’s pulmonologist used the same description of “flavor” of lung cancer when explaining NSCLC and SCLC to us. 

Good news is his BRAIN IS CLEAR!!!  Thank goodness for small mercies!  I was very concerned because it had been almost 6 months since his original scan.  When I asked the Oncologist why, he said it was not recommended in the NCCN literature.  I then signed up for that website and I found numerous mentions in the clinical and patient sections about brain scans being warranted  at the end of treatment and every 3 to 4 months for Extensive SCLC.  I printed it all out and highlighted them but I’m glad I left them at home since it’s not a bridge we need to cross at this time.  

In the beginning we were told that surgery and radiation weren’t an option because of its stage and where everything is.  He still hasn’t brought it up even with knowledge of the new concerning areas.  Do I need to ask him for a Radiologist Consult or should I pursue one on our own? Maybe “staying in his lane” is what I don’t like about our Onc. I want to know what possible next steps are and he is not very forthcoming.  I feel totally alone.  

 

[Tom Galli]

Kathie,

You can ask your medical oncologist for a radiation oncology consultation or just book one yourself. If you do book one yourself, be sure to bring copies of all your scan and test results to both doctors are playing off the same sheet of music.

Glad the scan cleared Scott's brain. That is always comforting news. You've told us that Scott has had a good response from first-line therapy (Carboplatin/Etoposide + Atezolizumab). And, I know you've read how difficult small cell is to treat. If it were me, and I had a chance to get tumors fried to reduce tumor burden and the possibility of new mets, I'd press for precision radiation. There are folks who are patients in the Lungevity family who've had multi-focal (multiple tumor) precision radiation treatment with very good results. Yes, multi-focal radiation has its risks but so does small cell. Ideally, your radiation oncologist will outline the competing risks to you so you can make an informed decision.

Stay the course.

Tom

[LUNGevityKristin]

Hi Kathie. I'm so sorry about your husband's progression.  And I'm sorry you are feeling alone.  Please join us at our next caregiver meetup Thursday, October 28th.  I can't tell you how valuable it has been for loved ones of lung cancer patients and survivors to connect and support each other.

https://www.lungevity.org/for-patients-caregivers/support-services/virtual-meetups

Consider this your engraved personal invitation.  We would love to see you there!

[KathieF]

Thank you Tom, I will look into precision radiation.   I appreciate the info on the virtual meetups too Kristin, I wasn’t aware of those. I will plan to attend one really soon! I’m extremely grateful for this forum, it has truly been invaluable.  We don’t know what we don’t know and the sharing of information helps us all. 

[KathieF]

Update:  We were notified by the clinical trial team right at the final step before randomization that he had exclusion criteria that wasn’t listed.  Apparently the tumor is too close to a pulmonary artery.  We understand fully, but are obviously sad because we had hoped to have the trial mostly of immunotherapy drugs rather than SOC Topotecan.  My understanding is it is imperative to do a trial before standard of care because that could also be an exclusion.  It’s been 6 weeks with out treatment and who knows when the Atezolizumab stopped working, so Scott needs treatment like, yesterday.  His voice is starting to sound off again and has been more sleepy.  He will start Topotecan + Atezolizumab next week, since Topotecan is a 5 day infusion. 

I will start a new thread regarding this but after the news about being dropped in the trial, we met with the Oncologist yesterday to find out next steps and he FIRED us due to a personally conflict with ME!!  

[LUNGevityKristin]

Oh Kathie, I'm so sorry.  That is a lot.  Do you have a referal for a new Oncologist? What can we do to help?

 

[Tom Galli]

Kathie,

Oh my! That's not good! I hope you find another broader minded doctor quickly.

Stay the course.

Tom