kjaMom

[kjaMom]

Hi...I'm new...my son is 41...he was diagnosed February of 2020 with sclc. Its in a bad spot at the top between the lungs. They said  he probably had it in January as the Dr. did not see the tumor then and said he had pneumonia. When he returned to E.R. in February, the new Dr. said "hey I see a tumor in the old xray that nobody noticed a month ago. So in March he started chemo. (? platinum) and gave him fasttrack social security thank God. He also had a small tumor on adrenal gland at diagnosis. Otherwise scans were clear. Stage 3 b or c ?

He had12 weeks of the platinum and was much improved.  But a scan 3 weeks later said it was worse..getting bigger so now hes on Keytruda. Hes still up & atom most days. Takes his own meds & takes care of himself, lives alone. Im trying to find a place we can live together so I can be there every minute for him. Tell me what to do next so I can help him. Thank you.

[LouT]

kjaMom,

Welcome to the forum nobody wants to be a part of.  I'm sorry to hear about your son's diagnosis.  Most of the cancers found here are either found while looking at something else or overlooked as a symptom of some other sickness.  You'll find a supportive and knowledgable group here and people who have had all forms of treatment.  In my case the cancer was NSCLC Squamous Stage 1a and was treated with surgery alone.  Many others here have had experience with different forms of chemo and immunotherapy and I'm sure you'll be hearing from them shortly.  Many are long-term survivors with inspiring stories to tell.

In the meantime, I wish the best for your son and his treatment and will follow your thread and offer help whenever I can.

Lou Torres

[LUNGevityKristin]

I'm so sorry to hear about your son's diagnosis.  We have a Caregiver Meetup on Zoom on Thursdays.  https://lungevity.org/for-patients-caregivers/support-services/virtual-meetups-for-lung-cancer-patients-survivors-and z

We also have a Facebook Group for Younger Adults if your son would like to connect with other younger lung cancer patients and survivors https://www.facebook.com/groups/YASlung/

[Steff]

Hi kjaMom,

I am so sorry that you have to see your son deal with lung cancer.  But I am happy to hear that he has a loving mother like you!  I'm a caregiver for my mom who has had NSCLC twice, originally 5 years ago and a recurrence 4 years ago.  Watching my mom go thru treatment was tough for me.  I'm lucky that she is a good patient and does what she is supposed to.  As for what you should do next, I wish I could tell you that.  Here's what I did, maybe it will help:  I armed myself with as much knowledge as possible about my mom's type of lung cancer and the treatments she was getting.  The main LUNGevity website has great resources that are up-to-date.  There are also great resources for caregivers too.  I personally have used their questionnaires to give me ideas of what questions I should be asking the docs.  While I feel confident in my mom's oncologist and knew she was on top of any issues my mom had, that wasn't the case for the times my mom was hospitalized due to complications from lung cancer and treatment.  My knowledge of her lung cancer, treatments, current meds, etc was helpful to hospital staff.  Empowering myself with knowledge helped me feel like I had some control over the situation (I'm a control freak!).  I also tried to keep up with new treatment options incase my mom's current treatment plan wasn't working.  I wanted to be ready to have an educated discussion with her docs rather than feeling like I was behind and trying to catch up.  I was able to ask questions in real time versus emailing or asking at the next appointment.  

I personally love the idea of the 2 of you living together - if that is something he wants.  I wish I was able to do that with my mom, but my husband probably wouldn't have been too happy about it! lol

Hope some of this helps.

Take Care,

Steff

[D iane]

kjaMom.  So sorry to hear about your son.  Fair warning:  Small cell is a very aggressive cancer with no cure, so the name of the game is stability with the treatments.  He's so young.

This type is only 2 stages:  Limited and Extensive.  It sounds like he is extensive given the mets to his adrenal gland.  That is commonly where it goes first.  I have not heard of Keytruda for this type, but hopefully it will work to keep the disease stable.  Should he remain stable and not progress for 6 months (assuming he's probably getting scanned about every 3 mos) then he could repeat the 1st line chemo treatment again.  If not, there are still a couple of other chemos that  he may get.

Best wishes to you both.  I just went through this with my husband.  I still stop in hre now and again, if there is anything I can do to help.