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Stage IV


Janetp129

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Hi everybody. My name is Janet and I am Trying to gain knowledge and keep positive and strong. Diagnosed in January 2017 with stage IV lung cancer. Getting my 3rd chemo 3/24/17. (Carboplatin and Permetrex) I live in Miami and fly to Houston to MD Anderson for all my treatments Would love to hear from other people in my situation!!

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Welcome Janet,

You are certainly going to a fine treatment hospital.  My original diagnosis was stage IIIB but I had pre-surgical radiation and chemo and after my right lung was removed, I had surgical complications that lasted about a year.  In that time, the cancer spread to my remaining lung and all I had as treatment alternatives was chemotherapy.  My recipe was Taxol and Carboplatin.  Permetrex confused me till I googled it.  It is Alimta, a common pairing with Carboplatin and more tolerable in some than Taxol.  What type of lung cancer do you have? Mine was non-small cell Squamous cell lung cancer.

You are starting your 3rd infusion.  By now you've charted your side-effects (onset and duration) and likely have and good mitigating medicine.  So, after spreading to my remaining lung, I was right where you are 13 years ago -- no treatment available but chemotherapy.  I stress two points: chemotherapy worked for me and if I can live, so can you.

Take some time to note how many long tenured survivors we have on this site.  Lung cancer is a nasty disease and treatment is rarely "one and done" but we are here.  This is a blog I wrote sometime ago about surviving lung cancer.  Steps 5, 8 and 10 may be of interest.  

This is a good place to ask questions.  It is also a good site to read through while flying back and forth from Houston to Miami.  

Stay the course.

Tom

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On 3/18/2017 at 3:20 PM, Tom Galli said:

Welcome Janet,

You are certainly going to a fine treatment hospital.  My original diagnosis was stage IIIB but I had pre-surgical radiation and chemo and after my right lung was removed, I had surgical complications that lasted about a year.  In that time, the cancer spread to my remaining lung and all I had as treatment alternatives was chemotherapy.  My recipe was Taxol and Carboplatin.  Permetrex confused me till I googled it.  It is Alimta, a common pairing with Carboplatin and more tolerable in some than Taxol.  What type of lung cancer do you have? Mine was non-small cell Squamous cell lung cancer.

You are starting your 3rd infusion.  By now you've charted your side-effects (onset and duration) and likely have and good mitigating medicine.  So, after spreading to my remaining lung, I was right where you are 13 years ago -- no treatment available but chemotherapy.  I stress two points: chemotherapy worked for me and if I can live, so can you.

Take some time to note how many long tenured survivors we have on this site.  Lung cancer is a nasty disease and treatment is rarely "one and done" but we are here.  This is a blog I wrote sometime ago about surviving lung cancer.  Steps 5, 8 and 10 may be of interest.  

This is a good place to ask questions.  It is also a good site to read through while flying back and forth from Houston to Miami.  

Stay the course.

Tom

Hi Tom!

thank you so much for your insight and advice, I truly appreciate it as I am still learning how to navigate this journey. My type of lung cancer is non small cell with mutation EGFR 20. I take Ondansetron for nausea and other than being tired and extremely cold I am not complaining. My only worry is that I have my son who has special needs and I am alone so I need to fight and live as long as I can. I will read your blog!! Thanks so much Tom and be well,

Janet

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On 3/19/2017 at 11:42 AM, skmcornett said:

Hi, Janet. I had four round of the same chemo last spring.  I am also a stage IV. How are your side effects?  How long do you stay in Houston after each treatment?  

Hi Susan!

so glad to meet you! I am hungry for information. Did you have four rounds and now which is your treatment? 

My side effects are not bad so far, I get weak on days 10 to 13 after chemo and super cold almost freezing most of the time but other than that I'm fine. I eat very well and with the 2nd. Chemo I stopped coughing so much. I am now in Houston for my 3rd chemo on 3/23/17 and they will also do a PET scan. I normally stay two days in Houston total. I fly back to Miami the day after my chemo. 

Be well!

Janet

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I had four rounds of the cisplatin/pemexetred starting in March 2016 and ending in May 2016.  Starting next week, I'll have 6-7 rounds of carboplatin and taxol for a recurrence in my lymph nodes.  I'll also have 6-7 weeks of radiation.  

Keep us posted on your progress.  Please be careful when flying - when I traveled for work, I almost always caught something and now is not the time for you to catch a cold!!

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Hi, Janet,

Welcome to LCSC. This is a great place to connect with others who are on a similar journey. I am happy that you've already been able to connect with Susan and Tom. Many of our members have a great deal of practical knowledge from their own personal experiences that they are happy to share in the discussion boards.

I hope that your appointment went well last week. Please keep us posted and feel free to ask any questions you may have. Please let me know if you'd like additional information/resources about a particular topic or if you'd like to learn more about LUNGevity's support programs and resources.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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On 3/18/2017 at 3:20 PM, Tom Galli said:

Welcome Janet,

You are certainly going to a fine treatment hospital.  My original diagnosis was stage IIIB but I had pre-surgical radiation and chemo and after my right lung was removed, I had surgical complications that lasted about a year.  In that time, the cancer spread to my remaining lung and all I had as treatment alternatives was chemotherapy.  My recipe was Taxol and Carboplatin.  Permetrex confused me till I googled it.  It is Alimta, a common pairing with Carboplatin and more tolerable in some than Taxol.  What type of lung cancer do you have? Mine was non-small cell Squamous cell lung cancer.

You are starting your 3rd infusion.  By now you've charted your side-effects (onset and duration) and likely have and good mitigating medicine.  So, after spreading to my remaining lung, I was right where you are 13 years ago -- no treatment available but chemotherapy.  I stress two points: chemotherapy worked for me and if I can live, so can you.

Take some time to note how many long tenured survivors we have on this site.  Lung cancer is a nasty disease and treatment is rarely "one and done" but we are here.  This is a blog I wrote sometime ago about surviving lung cancer.  Steps 5, 8 and 10 may be of interest.  

This is a good place to ask questions.  It is also a good site to read through while flying back and forth from Houston to Miami.  

Stay the course.

Tom

Hi Tom,

My Mom has had some complications also.  What have you encountered?  She has developed atrial fibrillation and gotten two blood clots, one to her good lung and one in her leg.  She has also developed 15-pounds of edema which is making it even harder to breath.  I am at such a loss as to what to do. My poor Dad is beside himself with worry.  He hasn't left her side (15 days still in UT medical center).

Thanks 

Melissa

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Melissa,

Oh my, your mother has a lot going on.  My complications were surgical in nature.  Because I had pre-surgery radiation, the healing capability for my respiratory system was markedly reduced.  I had a bronchopleural fistula -- from ruptured sutures -- and two surgeries to correct that problem.  I also suffered a pulmonary embolism after the 2nd surgery that complicated things.  I do not have AFIB nor did I have edema.  Others I know have had that symptom and draining the fluid was a difficult procedure.

I hope things turn around for her quickly.

Stay the course.

Tom

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