Introduction...3.5 cm Right Lower Lobe mass

[KM_NRP]

UPDATE: as of Tuesday March 30. 2021

After meeting with Thoracic Surgeon and Med Onc I have a game plan.

Surgeon made it Stage 3A.  He is doing a Mediastinoscopy Friday to make sure everything is clear and nothing missed on the PET.

Then do Chemo - Once very 3 weeks with 4 treatments total.

Break for 4-6 weeks then

Lobectomy (RLL)

Depending on EFRG, maybe a medication daily forever.

Note: Chemo will be Alimta and Cisplatin

I still feel fine, except a bit anxious that my PCP noted.  LOL 

OH and in the folder of support information from Hershey Med Center, there was a thing about Lungevity for support.

~Kris

 

[LexieCat]

That sounds terrific--very hopeful and encouraging!

Frankly, anyone going into this lung cancer deal WITHOUT being anxious is a little "off," if you ask me. It's perfectly normal--you just don't wanna get paralyzed by it. 

But chemo, with an aim of surgery in your future, is very positive news. Thanks for sharing--and keep us posted!

[Tom Galli]

Kris,

Here are some tips and tricks for your infusion. Recovery from the mediastinoscopy is normally quick. You might experience a sore throat for a couple of days.

Stay the course.

Tom

[KM_NRP]

@Tom Galli

Thank you. I deeply appreciate your tips!!! 😊 

[KM_NRP]

Update: Had my Mediastinoscopy on Friday April 2, 2021.  Anesthesia wasn't a friend post-op.  Just the Nausea/ Vomiting/ feeling super crappy.

Definitely longer an 1 inch incision (glued) and still very swollen/ bruised.  I literally feel like I was throat punched.  However, I can still eat.  I do run short of lung volume at the end of sentences.  Still talking in a whisper but gets a tiny bit louder everyday.  Biopsy results came back as expected with only one node (S7) being positive.  So, treatment plan remains the same.  Chemo then surgery. 

 

Staying the course, Tom !  and looking forward to being able to yell at ignorant telemarketers again that make fun of my voice when they call me!

[G.A.M.]

I had things in the reverse order. Lobectomy (upper right, 3 cm mass) and then chemo. Mine was caught early by accident when my gall bladder decided to call it a day.

I hope your outcome is great. Seems like they caught it early. Be glad you have mandatory physicals, I guess.

Best,

Glenn

 

[Jesse L.]

I've been following your thread as our diagnosis is quite similar... I had an annual CT last December and they noted a suspicious 1.8 cm. X 1.2 cm. nodule in my RLL. More scans and a biopsy indicated it was an adenocarcinoma. So, on 2/25 I had a VATS procedure  to have the RLL removed. While that was quite successful, they unfortunately found two affected lymph nodes and removed them as well. So, after all tests were done I went from 1a to 3a in a hurry. Currently, I'm in a course of adjuvant chemotherapy, four courses started 4/5 three weeks apart with Carbo/Alimta to perhaps kill any stray rogue cells looking to set up shop elsewhere. Just to let you know here that the chemotherapy hasn't been too bad for me but it does affect everyone differently; just tired (they call it fatigue) a lot and a few small stomach issues (stay away from spicy foods). I still try to get at least a 4 miles walk in daily, weather permitting. But you got to play it by ear...what works for me may not work for you. I know I was told by medical that even some movement helps with chemotherapy side effects...

Well, even though its been a rush, so far so good I guess. I'm here to tell you that whatever post surgical pain you feel will get better, it's just going to take a good amount of time is all. And the lobectomy overall wasn't  the worst...I had a lot more issues post surgery when I had my prostate removed. I usually always slept on my right side and that won't happen for some months yet for sure. As to your lung volume, that will come back over time so you won't hardly notice a difference unless you're really exerting yourself. I do lots of walking and breathing exercises to expand lung volume and capacity and that really does help.  

Stay in touch and keep us informed of your progress...this website is great in that we're all pulling for each other! Take care...

[KM_NRP]

Update: Had Mediastinoscopy on April 2.  Anesthesia wasn't my friend this time.  Still have a swollen neck area and talking in a whisper.  That's all improving though slowly.

First Chemo was Tuesday April 13, 2021.  Felt great until Saturday late afternoon.  Thought it was a great idea to make some food I was craving, then ate a BIG serving.  Well, that won't happen again.  I'm instilling a 5 bite rule for myself.  Eat and wait, otherwise its a night and next day of horribleness.  This morning nausea is better but I have began to developed small blister on my throat.  Keeping an eye on them.  However, today is much improved over the last day and half.  I am taking my Zofran and Compazine more regular since the nausea set in.  

 

So, just adjusting to my new life for a spring / summer.  My new saying: It could be better, it could be worse. 

Have a great day everyone. 

[LexieCat]

Glad you're feeling a bit better. Don't forget to take a daily dose of Miralax if you're taking anti-nausea drugs regularly. Trust me, I learned the hard way that taking anti-nausea drugs before I start to feel queasy is a recipe for the most horrible, painful constipation imaginable. Taking the Miralax helped, as did cutting back on the anti-nausea meds until needed. 

 

[LouT]

Sorry I'm so late to the party here, but I'm moving to a smaller house on the 27th and I've been poring over, donating and throwing out stuff my wife and I had gathered over 44 years together...

I'm so glad to hear that you are in your treatment program and sorry to hear about the side effects.  Your attitude is a great one though (could be better, could be worse) and will help you more than you know. I personally have not had chemo of any kind, but many here talk about keeping a journal of their treatment so they can more accurately help the doctor determine all the data around symptoms and side-effects as their treatment progresses.  That may help you.  And researching is fine, but I would stay with souces like Lungevity as it is focused on your key disease and may be more updated and relevant than much of what is out there.

Please keep us posted and know that our thoughts and prayers are going out to you.

Lou

[KM_NRP]

@LouT  Moving sucks.  So much work. 

The weekend was a bit rough, but each day is better.  The "better" really is just the throat / mouth sores.  I'm getting them under control so life is good.   

~K

[Judy M2]

KM, MuGard is great for mouth sores but is very expensive. I was lucky that my chemo nurse just gave me a bottle. You might ask your oncologist if they have samples. 

FYI, my targeted therapy drug Tagrisso also can cause mouth sores (mucositis) because it goes after rapidly growing cells like hair, nails and those in the mouth and stomach lining. Earlier this week I had a recurrence of mouth sores after a busy and stressful week before. I used the leftover MuGard a couple of times and the mouth sores are gone. 

[G.A.M.]

On 4/19/2021 at 8:26 AM, LexieCat said:

Don't forget to take a daily dose of Miralax if you're taking anti-nausea drugs regularly.

 

I wish I'd gotten that tip before it happened a couple of times. 

[LexieCat]

19 minutes ago, G.A.M. said:

I wish I'd gotten that tip before it happened a couple of times. 

Trust me, I found out the hard way.

[TJM]

5 hours ago, LexieCat said:

Trust me, I found out the hard way.

It is definitely "hard"....too much?

[KM_NRP]

Update...

Sorry it's been awhile since I've been on or posted.  

Chemo 1- Not too bad.  Little nausea but no vomiting.  Rough for just about 2 days. 

Chemo 2- Horrible.  However, it's thought I got a "virus" of some sort which was a double whammy.  I was MISERABLE for about 5 long days.  Achy, couldn't get comfortable (even sold my soft and loveseat to but a more comfortable one), nausea, just stunk!!!!

-----CT Scan -tumor shrunk more 10%; lymph nodes are dying, no new disease

Chemo 3- Easiest so far.  Just a little tired here or there. I did get my 2nd B12 shot with this treatment.  I want one every treatment, I think that really helped.  NO MOUTH SORES this round!!!!

Chemo 4- June 15th.  This is the final. 

Then PET Scan and Surgery after 4-6 week from final Chemo.

Overall, most days are great!  I have found the heat / sun will make me ill very quickly (Headache and nausea).  Get tired on occasion, so I take a nap.  You really can't tell I'm dealing with this bump in road by looking at me.  Now, when I talk, that's a different sorry (mediastinoscopy issue). Eating is hit and miss.  So, I just eat what and when I can and what I feel like eating.  Feeling pretty fortunate in my journey so far.  Bonus is the family and friends that take me to my long chemo days (my kids) and appointments and make me dinner.  Very blessed. 

[LouT]

Wow...you've really been through the mill with the treatments, but I'm so glad to hear that the 3rd treatment went more smoothly.  My hope is that the 4th one is much the same.  It's also good to hear about tumor shrinkage and no new disease.  I'm aware that others here have experience with different forms of chemo, but for my part I pray that your 4th treatment is an easy one and that the results continue in the right direction.  Thanks so much for the update.

Lou

[Tom Galli]

KM_NRP,

Thanks for your update. I was wondering where you were in your treatment and how things are going for you. Side-effects are the real down side to chemotherapy. I like to think of the magnitude of effects this way: if this stuff makes me feel so lousy, imagine what it is doing to my cancer cells!

Stay the course.

Tom

[KM_NRP]

UPDATE: VATS for Lower Right lobe lobectomy and 2 lymph nodes removal on Wed. Aug 25. 2021.

This was done at Hershey Medical Center in Pennsylvania.  I was discharged Friday morning.  My chest tube

was my biggest owie, which wasn't big.  An occasional air bubble when I moved but very tolerable.  Since being home, 

my biggest issues is getting tired and needing a nap.  My breathing is great.  Didn't need my wedge pillow. I honestly can't tell

I had this done.  I'll take it, definitely.  Oncology follow up mid September, crossed fingers, good vibes and prayers.

Hope everyone is doing well.  Stay safe. Thank you all for being here for me, someone you don't even know.  

~Kris

[LexieCat]

Terrific! I had a small complication with an air leak (had to be re-admitted for deflation), but otherwise my experience was similar to yours. Amazing, isn't it? Keep us posted after your appointment.  

[Tom Galli]

Kris,

Wonderful news! Let us hope your September followup is without drama.

Stay the course.

Tom

[LouT]

Kris,

I'll join in here and say that this is a great update.  Please keep us updated and just know that the fatigue and weakness will lessen in time and you'll recover what you had before.

Lou

[KM_NRP]

UPDATE:

Pathology noted the tumor much larger than shown on scans at 5.3 cm.  Found 2 other lymph nodes involved the one was at S7 (near the carina- which is where the trachea splits into the two lungs)

Oncologist is still waiting on the EGFR results (Positive or Neg). 

Radiology consult was ordered but Tumor Board was very split over where or not there is any value in the treatment. Still waiting for that appointment to be scheduled (over a week later and this has to be done before the EGFR treatment begins).  Due to this positive node, which was one positive out of 4 samples. my staging went to 3B. 

So, just waiting on more results at this point.

On the surgery update; doing very well.  Worse part is where the chest tube was placed.  My lung function, to me, seems the same or very close to pre-op.  Asthma still a little issue here and there.  

Still "Staying the course" and just waiting.

Have a wonderful day everyone!

~K

[Tom Galli]

Kris,

EGFR results are important but I see no harm in having a radiation oncology consult. There are two disciplines who treat our disease: medical and radiation oncologists. Each brings different tools to the job and each has value. 

Glad your surgery recovery is going very well. Chest tube discomfort can be a "pain" but I found it leaves quickly.

Stay the course.

Tom

[TJM]

Kris

Thanks for the update. Please think hard before doing adjunctive radiation. My oncologist was 50/50 on the benefit. I choose to go ahead because Large Cell is more prone to metastasis than most LC's and I wanted to do as much as possible to clear the body of any cancer cells.

I now wish I had skipped that treatment. Radiation was much tougher on me than Chemo was (the fatigue was really bad). But the main reason is it messed up my esophagus. This is really not surprising and is a rather common result. I am starting to think it may never be "right" again. On the other hand I have been NED now for 18 months.

Wishing you the best regardless of which path you choose.

Peace

Tom