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MyHubsSCLC


KathieF

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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 

 

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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

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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! 

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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

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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! 

 

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  • 1 month later...

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?  

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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

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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! 

 

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