My 72 yo mother was diagnosed with Limited Stage Small Cell Lung Cancer - Feb 2023

[Jeff]

Hello everyone,

Names Jeff, I've lived with my mom all my life and as she has smoked for 60 years of her life ( She quit she was diagnosed cold turkey ) they have been hard times recently while back on 02/03/23 my mother had been experiencing difficulty breathing for almost 2 weeks since she was recently sick with a cold and thought it might have been bronchitis which had then led to pneumonia, so we decided it was time to go to urgent care. So after taking her there, they did a chest X-ray and discovered a large amount of fluid in her right lung along and what appears to be a large mass.

 

She was then taken by ambulance to the hospital where she was then admitted for 5 days when she was discharged on 02/08/23.

They ran 3 CT's, multiple tests, including a thoracentesis and drained 1.8 Liters of fluid, performed a bronchoscopy which is where they took multiple samples of the (3.5 cm of the right hi-lar mass). At the time, the pulmonary doctor said that she had extensive small cell lung cancer (Which 2 weeks later after a PET-CT scan showed it was limited stage). She met with a radiation oncologist while in the hospital which ended up being the doctor to get started with radiation treatment.

 

After she was discharged from the hospital and being diagnosed, 1-1/2 weeks later we were able to get right in to see him and get treatment right away. So she completed 25 treatments of radiation and was able to shrink the tumor quite a bit, originally it was for 33 treatments so they are saving the remaining at the end after her Chemo in case they need to.

She's had a total of 3 thoracentesis's while 1 of them she got a Pneumothorax ( Collapsed Right Lung )

 

While the cancer did spread to the nearby lymph node, it did not metastasis to her brain or bones so therefore that is why is is locally-limited and not extensive.
6 weeks after her radiation was finished, we finally were able to get a medical oncologist which he is 2 hours south of Bakersfield, CA. where we live. It was a long road of switching insurance plans (3 times) due to her being on Medicare Advantage. While this oncologist we ended up going to only took a PPO so I was able to get her the insurance she needed.

Her current plan of treatment which she started earlier this week on 05/08-05/09-05/10 is a combination of Carboplatin+Etoposide+Immunotherapy ( Atezolizumab ) also while adding a supportive care drug called Cosela ( Trilaciclib ) which is a myleosupport to reduce chemotherapy-induced bone marrow suppression.

Today is day 2 of her being back home and since yesterday, her arm has been swelling and today it is worse (I've read that it is a known Chemo side effect) since she did get administered in her arm for 3 days while leaving a port in). She’s been experiencing hard to swallow, which seems to be getting worse from when she got esophagitis from the radiation induced ( which never went away ) she’s been having  horrible headaches but was advised to not take Tylenol because it’s a strain on the kidneys and since chemo is so hard on the kidneys, then she can’t take it. She’s been taking Aleve but it doesn’t seem to touch it. 

 

Cycle #1 is completed and is set to do 4 cycles every 3 weeks.


I do enjoy research and abstracts, but I thought about joining a forum to get others stories, opinions and possibly help with outlook on small cell since it is rare and although there have been cases of cures, I feel as if those are outliers from what I am told and read.
 

While I am hopefully and I am her support, I’m all she has and being there from the start of this.

I will update as time goes by, but I am glad I found this forum for additional support.

Thank you,

 

Jeff

[LouT]

Jeff,

What we do here is share our experiences to provide solid information to those who come as well as providing support as they go through this difficult journey.  My lung cancer treatment was surgical so I cannot comment on various chemo/immuno/targeted therapies.  But I do understand that "small cell" cancer can be a tougher road to travel and can also be resistant to certain treatments.  I'll leave you three links below (please read as education is important) that may help out as you go through this with your mom, and I'm sure you'll soon be hearing from other folks with experiences they can share similar to your mom's.  Please come back and keep us updated as you go through this time.

1. "10 Steps to Surviving Lung Cancer; From a Survivor"
2. "Caregivers Resource Center"
3. "Lung Cancer 101"

Lou

[Tom Galli]

Jeff,

Welcome here.

Seeing the radiation oncologist first while sorting out insurance problems was an elegant decision. So very sorry to learn about the chemo side effects, but the principal side effect is killing cancer cells and your mom's recipe of combination chemo (conventional drugs plus immunotherapy) works. There is every hope she'll achieve NED -- no evidence of disease, an outcome we all aim for.

Keep us updated and stay the course.

Tom

[Karen_L]

Hi Jeff,

Your mom has had a rough road so far; I'm sorry to hear that. The arm swelling and headache are important info for the doc to know; the cancer center where your mom is being treated should have a palliative care team, which can help with pain and side effects.

I wish I had better news about the esophagitis, but after I finished radiation, I was told things would get worse for about 2 weeks after the final treatment, and then things would s l o w l y improve. They were right. Things got worse. But they *did* get better. The key is to stay in touch with the medical team. The adage, "The squeaky wheel gets the grease," is important to remember. We tend to be too dang nice for our own good. Your mom had the right to not suffer, you have the right to make sure she isn't, and they have the responsibility to help her. The key is to be assertive but not aggressive. 

Best of luck , and please keep us posted,

Karen

[Jeff]

Thank you Lou, Tim and Karen for the insight and prayers. I truly appreciate everything I can get. 
 

My mom is about to start cycle #2 of the treatment and just 2 days ago she is now officially experiencing hair loss, she still has quite a bit of hair but it’s coming out if she brushes. I spent a couple hours the other night looking at synthetic wigs from Raquel Welch’s line up that she seems to really like, so hopefully they will be here by the time we get back from out of town.

She said they the hair loss is worse than the cancer and treatment itself ( to her ) she has been dreading it and was only hoping for hair thinning. Hopefully it slows down, but then with going onto the second treatment I’ve heard that the side effects are accumulative.

The status of her phlebitis on her arm is the sweeping has gone away but the color of her skin is red ( possibly from the chemo )  it as far as her vein, it’s swollen hard so they will have to use her other arm. This time they will just re-stick her each day rather than leaving a port in her arm for 3 days for the IV.

 

Thanks again everyone 

[Tom Galli]

Jeff,

I know how important hair is and therefore note your mom's concern but my hair grew back each time after 3 Taxol and Carboplatin infusion cycles.

Good news on the practical idea of removing her IV in between treatments. That would have driven me nuts. Let's hope the mid-treatment scan shows good results.

Stay the course.

Tom

[LilyMir]

Hi Jeff,

When I had chemo my hair only thinned (a lot, like half of it was gone) and despite knowing it is not important in any way I grieved and cried in the shower every single time as I combed bunches of falling hair that clogged the drain. My chemo was also very hard on my veins, incredibly annoying to start an IV and then pain from toxicity. Sometimes it helped me just to cry and/or to acknowledge my grief and loss of a "normal" life no longer possible. Playing strong all the time is tough. It is OK to grieve a cancer diagnosis and to resent treatment mayhem but hopefully your mom will stay optimistic. Best of luck to her!

[BridgetO]

Hi Jeff, your mom is really fortunate to have you as a support!   She has gone through, and is still going through, a lot and your help I'm sure has made it possible for her to keep on going.  Navigating the insurance alone is an invaluable support. All my best to her and to you. Hang in there, both of you.