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Intro from NC


rebrondavis

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Hello to All:

 

I am brand new to this support group. My mom was diagnosed on Oct 9 with Stage IV extensive stage SCLC. We are still processing the diagnosis and the prognosis. This is our first cancer diagnosis within the immediate family since my childhood. I received this link from the therapist at my mother's hospital. I am happy to learn more and be in a safe space to discuss and share with others. I am praying for all of us who are on this journey with our precious loved ones. Thank you very much. 

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Hi there, and welcome! I'm sorry about your mom's diagnosis, but glad you found us. This is a great group for information and support. 

Small cell is a tough thing to face. I'm Stage IV NSCLC.

What kind of treatment is planned for your mom right now?

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Thank you for the welcome. Thank you for sharing with me. My mom will do 4 rounds of chemo and the immunotherapy. She just completed round 2 of the chemo a few days ago. She started round 1 the day after her diagnosis. So far her main side effects are tiredness and losing her hair. She has only had nausea twice and vomited once from over-exertion. She returns on Nov 23rd, and then Dec 14. I am grateful to learn more about how to support her on this journey.

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Hi and welcome to our group. Sorry to learn about your Mom. We are more than willing  to help with any questions you might have providing we know the answers. Can you please say  the names of the chemo and immunotherapy your Mom is taking. Also when is she scheduled for a CT scan?  All the best to both of you.

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Welcome! Sorry to hear about your mom. You are in the right place, everyone here is extremely helpful and knowledgeable. Great to talk to as well. Were all here to listen.

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I'll join my fellow members in welcoming you to the forum.  Feel free to ask anything and know that you'll find people of similar experience, strength and hope here for you.

Lou

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Hello and Welcome!

It’s great to hear you were referred to us.  For a long time Lungevity was not well known so we’re making progress in getting the word out. 
 

I’m very sorry to hear about your Mom. We can all relate to what you are going through right now. This is a wonderful community that will always get it.  Just know you can talk to us about anything, you’re not alone, there are no dumb questions and when you feel off kilter someone is always around.  
 

Michelle 

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Thanks for the warm welcome. This is all very new for us. My mom is 73, has been a chronic pack a day smoker. She thought she had pneumonia and a progression of her COPD around August with a productive cough. She was due for a CT scan routinely every six months in October. 
 

Upon her third ambulance ride to ER, twice in September and this last time in October, with her 2nd admission in two weeks, did we understand the fluid build up to be pleural effusion. That is when she also had another CT scan and the discovery of liver lesions, lymph node activity, and of course the SCLC carcinoma.

She started the very next day inpatient on carbo/etop. And then Granix before discharge. Her breathing improved considerably. 

They added atezo at this 2nd round on 11/2. She came home with Neulasta (self injection). Her next CT scan is on 11/23 with her 3rd round of chemo. Her energy is better this time, hair is starting to come out, but overall tolerating the treatment. 

Please let me know which forums to go to and what additional questions we could ask of providers. Thanks again. 

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My two cents on how to care for your mom. Dont let the cancer dominate all aspects of your lives. Laugh, have fun, talk about other things, make plans for the future. I have cancer....but cancer does not define me.

Just finished a nice night with a couple of dear friends. She has breast cancer and just finished her last treatment (been battling it for two years). We talked. We laughed. We complained about our kids. We did talk cancer but it wasn't the focus.

Special night.

Peace

Tom

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8 hours ago, rebrondavis said:

Please let me know which forums to go to and what additional questions we could ask of providers. Thanks again. 

We do have an SCLC forum, which you can find here: https://forums.lungevity.org/forum/5-sclc-group/ There aren't as many people here dealing with SCLC as there are with NSCLC--that's a more common form of lung cancer. Some of the drugs and the issues that may come up are more small-cell-specific, but general things, like how to address loss of appetite or other side effects, are common no matter what kind of lung cancer. So certainly don't feel you have to post in the SCLC forum exclusively.

You also might find the Caregivers forum helpful, which is here: https://forums.lungevity.org/forum/9-caregiver-resource-center/. I've been a caregiver, and it's very easy to burn yourself out if you don't take care of your own needs. 

One thing you should know about small-cell--it's a type of cancer that often responds very readily to chemo, but then has a tendency to come back and be very aggressive. Everyone's experience is different, though, and thankfully there are new discoveries being made all the time. I'm just giving you a heads-up that early response to chemo doesn't necessarily mean it's down for the count. 

Has your mom had a PET scan to see where else the cancer might have spread? Has she had a brain MRI to check for brain metastasis? Those are both common tests when someone has just been diagnosed with any kind of lung cancer (other than, sometimes, VERY early stage). 

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Hi and thanks for the links to the forums.

*ETA, no PET scan, only CT and liver biopsy:

The PET scan and biopsy show metastatic liver and lymph nodes, but an MRI shows no brain metastasis yet. We are still processing and focused on enjoying each day. I also just joined the lungevity FB group. My mom has requested a one on one support. We remain hopeful. 

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12 hours ago, rebrondavis said:

Hi and thanks for the links to the forums.

The PET scan and biopsy show metastatic liver and lymph nodes, but an MRI shows no brain metastasis yet. We are still processing and focused on enjoying each day. I also just joined the lungevity FB group. My mom has requested a one on one support. We remain hopeful. 

So sorry about your Mom.  Hopeful to remain stable for a time is good.  This cancer, as already stated the chemo can really knock it back at first until it doesn't.  Everyone is different.  We stayed hopeful and upbeat and we enjoyed each and everyday we had!  I wish it was longer, but.  Best wishes.  I check in here once in great while, or you can message me if you have any questions.  My husband's journey is in my signature.  He was just 60.

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Hi Diane, I appreciate your thoughts and warm wishes. I am so sorry about your husband. We are doing well this week now that chemo is almost a week out. The hardest part is explaining to my mom that there is no cure yet. We are planning a good extended visit from family over the holidays. Mom has 5 grandkids! Best wishes to all.

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I'd suggest being super-careful about that family visit. Remember, your mom will likely be immunocompromised and very susceptible to infection. I'm not saying you shouldn't have the visit--it would probably be great for her spirits--but I'd suggest discussing it with her oncologist and making sure any visiting family avoid any close contact with anyone who might be sick. And a flu shot for everyone would be an excellent idea.

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Rebrondavis,

Welcome here.

You've met a lot of members and all have provided valuable insight. I want to reinforce Lexie's caution about a holiday family gathering. Your mom is already having a tough time generating white blood cells (your comment about an auto injector for Neulasta) and her immune system won't stand up to the garden variety cold of the week, much less a COVID episode.

Here is some information about small cell lung cancer. As mentioned it is a tough row to hoe, but during our International Lung Cancer Survivorship Conference, I was on a panel with a 6-year small cell survivor. There are others. And in fact immunotherapy is now starting to move the survival needle for small cell. I'm glad your mom requested one-on-one support.

Let us know how else we can help you care for your mother.

Stay the course.

Tom

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Thanks both of you. I agree with not having a large gathering. These guests would be my sister and family from out of town. My family is local and quarantined with my mom, aunt, and uncle this summer for the pandemic since they are elderly. Meaning we did not open our house and we were only meal drop-off visitors. We will all have flu shots by next week.

We insist on handwashing, then sanitizer, and mask, as well as extended distance for her few visitors. The providers have been excellent about precautions. We mask and face shield my mom and myself when out for chemo. I use handwashing, wipes, and sanitizer during her transport. 

My thoughts are no close contact, keep mom in her room vs. out to living room when someone visits, that way they can sit at a distance at her door, instead of close like on the couch. We are continuing with disposable utensils and plates, and no more than one visitor outside of the family at a time. We are also cleaning doorknobs and remotes and bathroom and kitchen frequently.

Sadly, I cut my visit to just serving a meal today because mom had two providers and her visitor (boyfriend). Which forum can address immune suppression? I am afraid to hold my mom close for these reasons. Instead I rub her hand or head, and blow a kiss... thanks for the link for more info on SCLC. 

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We don't have a specific place for discussions about immune suppression during chemo. I'd suggest just doing general google searching and reading the articles posted by cancer experts like MD Anderson, Memorial Sloan Kettering, the Cleveland Clinic, etc. 

Also, talk to your mom's treatment team about their recommendations.

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Thanks again, I am working on palliative care today. I may put a sign at the inside of the front door to indicate strict measures since she is in a shared home. Blessings to all. 

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Thank you, I am waiting for more info. Insurance has authorized... they say it could provide additional daily aides, nutritional support, and maybe a doctor at home. It is not quite hospice. I will post when I know more. 

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