Hello

[Bunch]

Hello Everyone,

 

My boyfriend was diagnosed with Stage III NSLC a few weeks ago. He is scheduled to start chemo (Taxol and Carboplatin weekly) and daily radiation treatments on August 20 and I joined this forum to help him find out what other people have experienced with their treatments. I think it helps when you have an idea of what to expect.

 

[LexieCat]

HI, Bunch, and welcome!  Afraid I'm not much help with chemo information (I had surgery as my only treatment), but plenty of folks here will be happy to share their experiences with you.  Just wanted to welcome you and let you know you've found a great group here.  There is a ton of experience, knowledge and support to be had from the lovely folks here.

Teri

[Laurel]

I am sorry you and your boyfriend have to go on this journey. However, this is a great forum or information and support.

I have stage 3 NSCLC. I had surgery Feb 16 2018 removing top right lobe and 13 lymph nodes. I was told I was cancer free but lung cancer is persistent so....chemo and radiation. I just completed 4 cycles of chemo every three weeks of carboplatin and alimta. After my first infusion, my husband and I had 5 weeks of pneumonia. My primary doctor has been most helpful with illness and side effects. I start daily radiation in a few weeks.

Nausea would hit me for longer and longer times. I had ginger cookies, saltine crackers, ginger candy from Amazon.com, along with prescribed medicine as needed. Heating pad on my stomach or back was helpful.

Share specifics as you both go through this and you'll have lots of ideas.

[BridgetO]

Hi Bunch and welcome,

I'm sorry to hear about your boyfriend's diagnosis. I have some experience with concurrent chemo and radiation, but not from lung cancer . My lung cancer was discovered early, stage 1, by a CT scan that was for rourtine surveillance for an earlier, Stage 3 gynecologic cancer. For the lung cancer I. like Lexiecat, had only surgery. For the other one I had surgery followed by concurrent radiation and cisplatin. After that was done, I had more chemo with  carboplatin and taxoterre. The main side effects during my  chemo and radiation were digestive--these were probably mostly due to having my digestive system radiated, which shouldn't be an issue with lungs. The platinum drugs (carboplatin and cisplatin) are noted for causing nausea, though. Your BF will probably be given some nausea medication. I was fairly functional thoughout my treatment and was able to drive myself to appointments. Some people have a lot of fatigue with radiation. Mine was minimal. I did develop some neuropathy in my feet from the taxoterre, and taxol is even more likely to cause it. 

Something to watch out for during chemo is any kind of fever. Many chemos have neutropenia as a side effect. This is low neutrophils, a kind of white blood cell that combats infections. Often fever is the only symptom and these infections can become  life threatening quickly. So if your BF develops fever, contact the doctor or go to the ER immediately. Don't "wait until morning". I had two bouts of neutropenia during my treatent-- in one case I had zero neutophils. I was put on antibiotics right away and recovered quickly.

I would say that this kind of treatment isn't pleasant, but most people find it tolerable. In retrospect, I am finding it better that tolerable, because my gyn cancer was very aggressive and here I am 7+ years later with no evidence of disease. 

All my best to you both.

Bridget O

[BDB]

Hi Bunch!

I'm a newbie here! But, saw you're post and decided I'd throw in my 3 cents.

Did your boyfriend have a bronchoscopy, where they go in and cut out a piece of the tumor? If no, is it in a place they can't biopsy? If yes, has the tissue been sent off for molecular testing? A lobectomy wasn't an option for me. But I did have a bronchoscopy, tissue sent off, and results gave my Doctor the specific type of cancer I had (ALK).  So my doctor's recommended treatment was targeted drug therapy with Alecensa. Because Alecensa targets the ALK type of cancer.

Best of luck to you/boyfriend in this journey

 

[Tom Galli]

Bunch, welcome a bunch!

You didn't say but no surgery suggests a Stage IIIB diagnosis.  That was my stage also.  Non Small Cell Lung Cancer (NSCLC) comes in three flavors: Large cell, Squamous cell, and adenocarcinoma. Was a biopsy performed and what were the results? Is the sample being tested for biomarkers? Your boyfriend is in first line (the first treatment), and he is receiving the national standard of care for non-surgically treated lung cancer: a chemotherapy doublet (Taxol and Carboplatin -- I had a total of 18 infusions of these drugs so I know them too well) and conventional radiation.

I think your boyfriend will find the first couple of weeks of radiation easy going, but week three and beyond will be difficult.  Radiation kills cells (all cells) and the body works hard to replace them and this saps one's energy.  The weekly chemotherapy sessions are normally a reduced concentration.  I didn't even lose my hair in during this adjuvant (treatment given as a complement to radiation) chemotherapy.  Ensure he eats, calories are king, and this is not the time to start a diet.

In a nut shell, here is what to expect.  He'll make daily trips to the treatment center M-F for 6 weeks.  Most days, he'll spend more time signing in than in treatment.  Radiation only takes a couple of minutes.  Once a week, he'll have about a four hour infusion.  On the infusion day, he may need to take steroids in pill form every six hours starting 18 hours before the infusion.  Then the first bag is steroids, so expect he'll surf the steroid high -- no sleep and eating everything in the house!  We informally call it "roid rage". Here is more information to help prepare for infusions. And here is information that may help prepare for the toughest part of an infusion -- the IV stick.

He should see the treating radiation oncologist every two weeks during his treatment period.  About 60 to 90 days after his last radiation treatment, he'll have a diagnostic scan, likely a CT scan.  Hopefully, the CT scan shows no evidence of disease -- NED!  We love NED here!  So how does one survive lung cancer?  Here is an approach.

You'll likely have lots of questions and this is the place for answers.

Stay the course.

Tom

[Robert Macaulay]

The life of cancer patient is life of appointments.  lol

[Qnrlene]

Hi Bunch! I am new to all of this too hopefully we can find support together my dad was diagnosed with stage 4 lung cancer incurable. I dont know much and my dad just started chemo three weeks ago going for 2nd round of chemo for 6 hours next week. I have found the Anerican Cancer Society is a great place for resources if you need them they are available 24 hours to talk if you need it. 

[BridgetO]

Hi Qnrlene and welcome. I'm sorry about your dad's diagnosis. If you hang around on these forums  you'll find people who were diagnosed at stage 4 who have long term survival and a good quality of life. There is hope!  American Cancer Society is indeed a good place to look for resources. The Lungevity main site is another place to find lung-cancer-specific information. If you haven't seen it already, a good place to start is Lung Cancer 101. Here's the link: https://lungevity.org/for-patients-caregivers/lung-cancer-101 . These forums are alos a good place to find information, support and hope. Let us know if you have questions and how we can support you.

Bridget O

[Donna G]

THi Bunch, welcome.   I was Stage 3B when I was diagnosed.  The plan was chemo and radiation, then check for results.  My tumor shrunk,  they did take 

out my R upper lobe, then that was followed by more chemo.  For me the plan worked.  I have survived over 20 years now.  Please keep us posted.

Donna G