Mom diagnosed with stage 3b

[Kelvin4426]

My mom was just diagnosed with 3b and I'm heartbroken. I've read the papers buy didn't really understand so really wanted peoples opinions on 3b and if there's anyone out there with happy stories with experience with 3b to keep me happy

[LouT]

Kelvin,

Welcome to our forum, sorry you need to be here.  Others here have been diagnosed at stages 3 and 4 and will be responding to you soon (I was diagnosed at Stage 1).  But Lung Cancer has its own set of challenges and characteristics.  We have a section online called "Lung Cancer 101" and it can be found here. This can give you a reasonable overview of what your journey will hold.

Lou

[Tom Galli]

Kelvin,

Sorry to learn of your mother's diagnosis; I was also diagnosed Stage IIIB in February 2004 and had a multitude of treatments. Some worked and some did not. But, I'm here. I can't share a happy story for I find no happiness in lung cancer but my hopeful message for your mother is if I can live, so can she.

Stay the course.

Tom

[Kelvin4426]

6 minutes ago, Tom Galli said:

Kelvin,

Sorry to learn of your mother's diagnosis; I was also diagnosed Stage IIIB in February 2004 and had a multitude of treatments. Some worked and some did not. But, I'm here. I can't share a happy story for I find no happiness in lung cancer but my hopeful message for your mother is if I can live, so can she.

Stay the course.

Tom

Hi Tom I'm glad but also not glad that you went thru stage 3b as I've seen you in many postings! Gives me a lot of hope for my mom. Question for you was what were all your treatments that you have had from the first to last

[Justin1970]

Hi kelvin 

Sorry to here about your mom it's terrible and I know what you feel like I was diagnosed last August with stage 3b lung cancer and started treatment at the end of October radical chemoradiotherapy which worked well on the lung tumor and lymph nodes, unfortunately at the end of February I had a seizure and they found 2 brain mets which I've had gamma knife radiosurgery done on, try and stay strong and positive all the best 

Justin 

[Judy M2]

Hi Kelvin, I was also diagnosed at Stage IIIB in October 2019, when I was 66. When my primary care physician delivered the news that I had lung cancer, she told me it's not a death sentence anymore. Of course I didn't believe her at the time. 

I had 6x chemo and 30x radiation that ended in January 2020. Because biomarker testing showed that I had an EGFR mutation (Exon 19 deletion) that was causing my cancer, my oncologist started me on the targeted therapy Tagrisso in March 2020. In April 2021 I had No Evidence of Disease (NED) and am healthy and doing well today. 

It will be very important for your mother to get biomarker testing (either by tissue or liquid biopsy) so her oncologist can determine her treatment path. It can take several weeks and the waiting can be difficult, so try to hang in there. 

[Kelvin4426]

5 hours ago, Judy M2 said:

Hi Kelvin, I was also diagnosed at Stage IIIB in October 2019, when I was 66. When my primary care physician delivered the news that I had lung cancer, she told me it's not a death sentence anymore. Of course I didn't believe her at the time. 

I had 6x chemo and 30x radiation that ended in January 2020. Because biomarker testing showed that I had an EGFR mutation (Exon 19 deletion) that was causing my cancer, my oncologist started me on the targeted therapy Tagrisso in March 2020. In April 2021 I had No Evidence of Disease (NED) and am healthy and doing well today. 

It will be very important for your mother to get biomarker testing (either by tissue or liquid biopsy) so her oncologist can determine her treatment path. It can take several weeks and the waiting can be difficult, so try to hang in there. 

Thank you so much for your story! My mom is 63 so your both similar in age. Reading this gave me chills when I saw you were NED. Congrats on your journey! I've seen everyone talk about biomarker testing and was curious is that standard or do you have to ask your oncologist for them to test. 

[Tom Galli]

Kelvin, 

What is my treatment history? Here it is.

Stay the course.

Tom

[Judy M2]

Kelvin, biomarker testing should be standard but often it isn't. Just ensure that her doctor will include biomarker testing as part of the biopsy process. A lot has changed in the last few years and we now have targeted therapies and immunotherapies to treat different biomarker-driven lung cancers. Check out this link:

https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/biomarker-testing

[catlady91]

Hi Kelvin, my mum was diagnosed with stage IIIB in February 2020 and over 2 years later she's still here and NED (no evidence of disease). Stage 3 and even stage 4 lung cancer isn't a death sentence anymore. Even the first consultant who saw my mum said that 10/15 years ago it would have been a very bleak scenario being diagnosed with stage IIIB lung cancer, but now treatment has come a long way. My mum had immunotherapy, one of the latest breakthrough treatments for lung cancer. More and more treatments are being developed every day. There's a lot of hope out there and absolutely every reason to stay positive.

[Kelvin4426]

1 hour ago, catlady91 said:

Hi Kelvin, my mum was diagnosed with stage IIIB in February 2020 and over 2 years later she's still here and NED (no evidence of disease). Stage 3 and even stage 4 lung cancer isn't a death sentence anymore. Even the first consultant who saw my mum said that 10/15 years ago it would have been a very bleak scenario being diagnosed with stage IIIB lung cancer, but now treatment has come a long way. My mum had immunotherapy, one of the latest breakthrough treatments for lung cancer. More and more treatments are being developed every day. There's a lot of hope out there and absolutely every reason to stay positive.

Thank you for ur mom's story hoping my mom will follow!

[hillham]

Hi Kelvin,

I am 52 years old and I was diagnosed with Stage 3b NSCLC on April 26th, 2021, making TODAY my one year cancerversary. Wowza, I just realized that fact as I was typing this, and I don't know how I could have forgotten. I'd better get to the kitchen and make a cake! 

Last summer I had four rounds of cisplatin/pemetrexid and 30 days of radiation with curative intent. I got through those treatments without too much trouble, except for about 10-12 days I spent with esophagitis from the radiation. I did not lose my hair, and mostly had energy to live my life as normal. I've been NED since the first scans after my initial treatment. My fingers are always crossed.

The original biopsy revealed a Ros-1 gene mutation, which is very rare, but there are several effective targeted therapies that I'll be able to try down the line should I need to. You will definitely want to find out of she has any of the known mutations. For now I'm just trying to live my life between scans, working, traveling, and feeling quite good. There are incredible gains being made in lung cancer, but I understand how worried you must feel for your mom - I am worried for her too. I'm worried for all of us, but what we do is hang in there and put one foot in front of the other.  I know you'll find the strength to do that! Keep us informed. 

K. Hillham

[Pstar]

K. Hillham

Congrats on your one year anniversary! 
 

kelvin,

Hoping that your Mom’s treatment goes well. Will be praying that it does.

[Kelvin4426]

1 hour ago, Pstar said:

K. Hillham

Congrats on your one year anniversary! 
 

kelvin,

Hoping that your Mom’s treatment goes well. Will be praying that it does.

Tha ks for your prayers!  Means a lot

[Kelvin4426]

On 4/26/2022 at 4:33 PM, hillham said:

Hi Kelvin,

I am 52 years old and I was diagnosed with Stage 3b NSCLC on April 26th, 2021, making TODAY my one year cancerversary. Wowza, I just realized that fact as I was typing this, and I don't know how I could have forgotten. I'd better get to the kitchen and make a cake! 

Last summer I had four rounds of cisplatin/pemetrexid and 30 days of radiation with curative intent. I got through those treatments without too much trouble, except for about 10-12 days I spent with esophagitis from the radiation. I did not lose my hair, and mostly had energy to live my life as normal. I've been NED since the first scans after my initial treatment. My fingers are always crossed.

The original biopsy revealed a Ros-1 gene mutation, which is very rare, but there are several effective targeted therapies that I'll be able to try down the line should I need to. You will definitely want to find out of she has any of the known mutations. For now I'm just trying to live my life between scans, working, traveling, and feeling quite good. There are incredible gains being made in lung cancer, but I understand how worried you must feel for your mom - I am worried for her too. I'm worried for all of us, but what we do is hang in there and put one foot in front of the other.  I know you'll find the strength to do that! Keep us informed. 

K. Hillham

Thank you for this! My mom will be starting chemo and radiation soon and my doctor told me they tested for bio markers andbwill get results in a week or so but chemo/ radiation is standard and if there is biomarkers will be the next step. Doctor said she has a good xhance for biomarkers since she's asian nonsmoking woman hoping that is true

[Kelvin4426]

Hi guys just wanna give an update and a question I had. My mom went to visit the oncologist who will be treating her cancer and was told she will be on chemo/radiation for 4 months chemo 6 week radiation I believe.  She told her that she would lose her hair but will grow back l. Was wondering does this combo sound like the standard and do most people lose their hair? I've read a lot of people don't lose it

[Justin1970]

Hi kelvin 

That's great news about your mum starting her treatment atleast something is being done and it makes you feel better knowing that, I had radical chemoradiotherapy I didn't lose my hair but it thin out a bit, I think it depends on what chemotherapy they use but it will grow back, I hope everything goes well for your mom and has great results from the treatment, all the best 

Take care Justin 

[Pstar]

Kelvin,

I had 4 rounds of chemo with carboplatin and etoposide and 30 radiation treatments. My hair started to come out in clumps so I had my head shaved. It is starting to come back now, different color but coming back. I guess it will depend on the chemo drugs she receives. Hoping for the best for your Mom.

[Judy M2]

I had 6x carboplatin/taxol and 30x radiation before starting targeted therapy in March 2020. My hair also started to fall out so I had my husband shave my head. I bought cute headcovers and also got a sleeping cap that was donated to my infusion center along with other supplies by a local church. It took a good year before I needed to get my hair cut again. My targeted therapy has made my hair coarse and curly, which is odd because some people complain that they lose hair on it. 

In addition to hair, I lost my eyelashes several times, too many to count. That continues to this day. To me, this was more upsetting than losing my hair. 

There is a cold cap treatment that can prevent hair loss. Your mom might want to ask her oncologist about that. 

Best of luck to your mom. 

[Tom Galli]

Kelvin,

I'm mindful that you participate in the Canadian medical system and that system's standards of care sometimes differ from the US.

My first line treatment, like Judy, was 6 weekly infusions of Taxol and Carboplatin and 30 (M-F) sessions of fractional radiation. This type of treatment is often called chemo-radiation these days. In 2004, that was the first-line standard of care for non surgically treated non small cell, squamous cell, lung cancer. Ironically, I didn't lose my hair during first line treatment. My oncologist explained chemo is less potent in first-line chemo-radiation than that given when treatment is chemo alone. Radiation was the tumor killing therapy. The chemo's purpose was to sweep the blood and lymphatic system of stray cells that avoided the "death rays" of medical radiation.

But, after my first infusion of the real stuff in my third line treatment, my hair came out in clumps a couple of days after the infusion. I can positively affirm that hair loss is temporary but old-age is now interfering with the process!

Stay the course.

Tom

 

[Kelvin4426]

3 hours ago, Judy M2 said:

I had 6x carboplatin/taxol and 30x radiation before starting targeted therapy in March 2020. My hair also started to fall out so I had my husband shave my head. I bought cute headcovers and also got a sleeping cap that was donated to my infusion center along with other supplies by a local church. It took a good year before I needed to get my hair cut again. My targeted therapy has made my hair coarse and curly, which is odd because some people complain that they lose hair on it. 

In addition to hair, I lost my eyelashes several times, too many to count. That continues to this day. To me, this was more upsetting than losing my hair. 

There is a cold cap treatment that can prevent hair loss. Your mom might want to ask her oncologist about that. 

Best of luck to your mom. 

Thanks! Great idea on the caps didn't think about tht will start shopping around

[Kelvin4426]

3 minutes ago, Tom Galli said:

Kelvin,

I'm mindful that you participate in the Canadian medical system and that system's standards of care sometimes differ from the US.

My first line treatment, like Judy, was 6 weekly infusions of Taxol and Carboplatin and 30 (M-F) sessions of fractional radiation. This type of treatment is often called chemo-radiation these days. In 2004, that was the first-line standard of care for non surgically treated non small cell, squamous cell, lung cancer. Ironically, I didn't lose my hair during first line treatment. My oncologist explained chemo is less potent in first-line chemo-radiation than that given when treatment is chemo alone. Radiation was the tumor killing therapy. The chemo's purpose was to sweep the blood and lymphatic system of stray cells that avoided the "death rays" of medical radiation.

But, after my first infusion of the real stuff in my third line treatment, my hair came out in clumps a couple of days after the infusion. I can positively affirm that hair loss is temporary but old-age is now interfering with the process!

Stay the course.

Tom

 

Thanks! Just wondering if theres a reason why they do chemo radiation first? Is that the strongest combo before putting them on other stuff with biomaker testing? The doctor told me that it is first line and targeted etc is the next step to prevent it from coming back

[Kelvin4426]

15 hours ago, Pstar said:

Kelvin,

I had 4 rounds of chemo with carboplatin and etoposide and 30 radiation treatments. My hair started to come out in clumps so I had my head shaved. It is starting to come back now, different color but coming back. I guess it will depend on the chemo drugs she receives. Hoping for the best for your Mom.

Thanks! Will update after thry find out what type of chemo she will recieve

[Judy M2]

Kelvin, many oncologists prefer to use targeted therapy as the first-line treatment if an actionable biomarker is found and if surgery isn't an option. My oncologist wanted to treat me aggressively, and boy it certainly was. To me, targeted therapy is much easier to tolerate than chemoradiation. I think it depends on symptom burden. For example, if someone is having difficulty breathing, they would want to start treatment immediately rather than wait for biomarker results. 

[Kelvin4426]

16 minutes ago, Judy M2 said:

Kelvin, many oncologists prefer to use targeted therapy as the first-line treatment if an actionable biomarker is found and if surgery isn't an option. My oncologist wanted to treat me aggressively, and boy it certainly was. To me, targeted therapy is much easier to tolerate than chemoradiation. I think it depends on symptom burden. For example, if someone is having difficulty breathing, they would want to start treatment immediately rather than wait for biomarker results. 

Ahh ic I'm pretty sure my mom will find out about her biomarkers results before she starts treatment as they told me prob a week till they know the results a week ago. My mom still has to do some tests to see what type of medicine they will put for chemo next week