Kimberly

[WalkingHorse]

Hey everyone. I’ve been lurking for awhile and thought I’d poke my head up and say hello. 

First and most importantly I want to thank all of the regular posters here. I found this forum at the beginning of my cancer journey and you all really turned my way of thinking around. I was so down and scared when I was first diagnosed. This forum gave me my first glimmer of hope. So thank you all so very much.

After 58 years on this planet with zero health issues I ended up here. I was one of those that never went to the doctor (don’t do this). After months of dealing with joint pain that turned severe in the morning I finally went to a doctor. Long story short, in April of this year went to a GP who immediately suspected autoimmune issues and suggested I see a rheumatologist.  I was given a diagnosis of  RA and Sjögren’s. Doc wanted baseline x-rays to track joint damage. Didn’t get two miles down the road from the imaging department before I received a call from the rheumatologist telling me they found a rather large tumor in my lung.

From there I went numb. Doc referred me to pulmonologist who referred me to an oncologist and a fantastic cardiothoracic surgeon. 

Between all these new doctors, I had all the contrast scans, PET scans, brain scan, bronchoscopy, PFT, nuclear stress test for surgery, genetic testing, etc. 

In August I had a 9.5 hour RATS lobectomy (upper rt). Removed a 6.5 x 5.2 CM tumor. Clean margins. Doc also pulled 30 lymph nodes prior to the lobectomy to confirm that it had not spread. Lymph nodes were swollen so he was suspecting there might be cancer spread but it turns out autoimmune disorders can present in swollen lymph nodes. 

Surgery went great. Recovery was a lot easier than I expected it to be. Worst part was the cracked rib that occurred while wrestling the large tumor out. That particular rib had been cracked a year prior in a horse riding accident so I guess it was “fragile”.

Staged as T2b, N0, M0  IIB

Currently in the middle of adjuvant chemo treatment with curative intent per my oncologist. Started out with Alimta and Cisplatin. Had to switch out the Cisplatin for Carboplatin due to horrible tinnitus. I have two more rounds to go. Hate it but keeping my eye on the prize. 

Hope this isn’t too lengthy. Again, thank you all for being here. You all really saved my mental health at a time when I was lower than low. I was so moved by how much you all have helped that in May I changed my Amazon charity to Longevity.

Best,

Kimberly

 

[LouT]

Kimberly,

Welcome to the forum.  Sorry you have to be here, but glad you found us.  If I'm reading your post correctly it looks as if you were staged at IIb, is that correct?  You also had a good amount of testing and it's a great thing that there was no metastasis and clear margins.  Sorry to hear about the issues with the Carboplatin.  Hopefully the tinnitus eased off after stopping the med.  There are many folks here who have gone through chemo (I did not) and I know they'll be responding to you soon.  

You initial reaction of disbelief and depression is so very normal.  I'm glad the folks here could help out in getting you to realize that this diagnosis was not an automatic death sentence.  Welcome to our family and we hope you'll be with us as you recover and then share your experience with others.

Lou

[WalkingHorse]

Good morning Lou! You are correct. My staging is IIb. Initially IIa but the tumor ended up being larger than first thought.

Looking back the initial depression seems normal to me and was gone after a combination of finding you guys and having a treatment course set. What is surprising me now is the level of chemo brain that hits about two days after infusion and more disturbingly the depression hits hard around the second day post infusion. Fortunately the depression evaporates about 10 days post infusion and the chemo brain lightens up a bit. Still feel like I've been hit with a stupid stick though. 😛 

Thanks so much for the welcome! 

Best,

Kimberly

[Tom Galli]

Kimberly,

Welcome!

We share several diagnosis: lung cancer, Sjögren’s and tinnitus. My tinnitus was caused by too much rifle fire during a career's worth of soldiering. Nevertheless these days Sjögren’s and tinnitus are my principal concerns. After nearly 18 years of survivorship, my oncologist pronounced me "cured" in March, then promptly retired!

I also had all of my thoracic lymph nodes harvested during my biopsy. My tumor was also large and confined to the main stem bronchus of my right lung. In fact, my doctors couldn't believe all harvested nodes showed no evidence of disease (NED). They were also swollen but that was (is) the Sjögren’s. If you haven't found our Lung Cancer 101 section on the forum, here is the link. It has all kinds of tips and tricks to navigating chemo including surviving IV insertions.

You need not worry about the length of your posts. You've got a serious disease and we read every word. We also understand everything you are feeling, especially uncertainty. Soon, you'll be in the monitoring phase of treatment (regular CT scans) to check for recurrent disease. And, I still get checked, now once per year and each occasion is my personal journey into the Scanziety hole. But, I've had lots of recurrences and unfortunately, lung cancer has a nasty tendency to recur after curative treatment.

Here is a tinnitus tip. We play ocean sounds (surf breaking on a shore) at night using a smart speaker and that sound pattern breaks through my tinnitus and allows me to relax and sleep.

Stay the course.

Tom

[WalkingHorse]

Wow Tom it sure does sound like we have a lot in common. The tinnitus was such a surprise to me. I've been doing some mental exercises to try and tune it out. Getting better at that and at night I have always run a ductless A/C on top of our central air as I like it really cold at night. Ha! That noise from that does seem to help but gosh when the tinnitus first fired up I thought I would go insane. It's calmed down quite a bit thank goodness. I have always been very protective of my hearing and will continue to be so. I've done a lot of shooting over the years for sport as I grew up on a ranch. I also love live music. 

IV's are no issues for me (good veins) but I am grateful for my port. Makes the process so much easier and I've heard it can really burn when an IV is used. 

While I hope I don't have a recurrence I am aware that it is a likely possibility with lung cancer. As I told my sons, husband and father I am going down swinging. Never give up! 

I am anxious to get to the post chemo stage so I can get back in the gym and the pool. I miss doing my laps three times per week. The amount of muscle loss, post infusion depression and chemo brain have been not only a HUGE surprise to me but continue to be my biggest obstacles. 

Y'all have all been so great. Just reading here every day over the past months has been a great source of knowledge and comfort. 

 

Best, 

Kimberly

[Judy M2]

Lovely post, Kimberly. Glad you've found some comfort here. I've found this forum invaluable as well, not just for information but also for positivity. 

Sorry about your tinnitus. My husband has it as well, probably from loud football stadiums during his playing days and power tools during years of our home renovations. It can be quite maddening. He wears hearing aids now which have a tinnitus-reducing feature that works very well. He also finds that sugar or alcohol makes his ears "sing", as he puts it. 

I also had a short bout of chemo brain while on carboplatin/taxol. It went away sometime after treatment ended. 

Congratulations on your successful surgery. I hope your Sjogrens can be well managed. I hadn't heard of it before. 

Take care. 

[Susan Cornett]

Hi Kimberly - 

When I was diagnosed in 2016, this site was a lifesaver. When I had steroid-insomnia after chemo, I would read through the posts and find comfort in all of the stories and advice from the survivors. I also lurked before jumping in to the forum. 

I had chemo brain when I took Carboplatin and Taxol. It lasted for a bit after chemo ended but it did finally go away. I have not been so lucky with the tinnitus. My first round of chemo was Cisplatin and Alimta. Tinnitus started after my first dose. Super Doc said we could lower the dose but I was determined to continue at 100%. Now, 5 1/2 years later, the ringing never stops! But for me, it was worth it. 

Keep us posted on your progress. 

[WalkingHorse]

Last round of Alimta + Carboplatin today! Don't get to ring the bell until I go back in the morning for my neulasta shot. Doc says I still need to lay low for 6 weeks after last chemo. No large crowds, etc. Next time I will see her is in mid January for the first of my follow up CT scans to make sure all is clear. From there it will be a scan every three months for the first year. Then every six months second and third year then once per year fourth and fifth years. Scans stay clear through all that then she will consider me cured and cut me loose after year five with the option for annual scans.  I will be keeping my port in until we get three scans on the books. In the interim I will pop in the office for flushes every six weeks until removal. I am so glad to finally be putting this part of my journey in the rear view.  💃🤸‍♀️🎉🎊

[LouT]

Glad you are almost done with your regimen.  It's always a good idea to lay low until your body has time to fully recover it's ability to protect you from any kind of infection.  Waiting for scans is always a hard thing for me.  On the one hand I'm glad that my last scans were good, but then I worry about what will happen between those and my next scheduled scans.  But, "scanziety" is a real thing with us LC Folks.  Anyway, now you can relax a bit and enjoy the upcoming holidays.  Keeping your port for a while is a smart move.  Some folks seem to keep them for an extended period of time in case they need it again.  I assume you'll keep it until your next series of scans.  

Take some time to breathe, enjoy the fall weather and know that we are all pulling for you to have great scans.

Lou

[WalkingHorse]

Thanks so much for your kind message.  I am going to try my best to not board the scanziety train. This entire journey has been a lesson in staying present in the moment while advocating for myself and my health and to not borrow trouble as my grandmother used to say. The biggest upcoming bummer is the first of the year annual deductible reset. 🤑💸  This has been a million dollar + health year from me. Went from zero to handing out money left and right. 

I talked to doc about the port. I've been so happy to have had it but I am ready to see it go. Seems like I'm always hitting it while doing chores here on the farm. But I don't want to take it out too soon. She wants three scans on the books before removal. Sounds reasonable to me.

Looking forward to the holidays for sure!  i hope you and yours have a magical holiday season. ❤️

 

[Tom Galli]

I can't wait till you ring that bell!

I do recall the scan train after therapy. I'm sill on it betting but one CT per year. But, with all my recurrences, my doctor suggests at least one scan for me per year is a good idea.

I know what you mean by handing out money left and right paying for health care. Deductible resets are a huge pain but you are alive to realize this financial pain!

Stay the course.

Tom

[Karen_L]

It does feel like we need a money tree in the back yard....