Small Cell Lung

jewlz23

Newly diagnosed...looking for support and answers. Just started chemo this last week. Etoposide and another one. Side effects have me so scared. I scared most about my hearing going. Doc said I would probably lose my hearing due to cochlear damage. Breathe or hear, I guess that is a choice for me. I think I'd rather breathe but I'd like to do both. Just a drab, down day. Throat hurts from recent heart stent/plavix and related stomach upset and throat issues from that (I think).

Small cell supposedly is limited to just right lung right now but it grows pretty fast. Thing is they knew I had abnormalities in January of 23 and again in May of 23 and early June 23 and was diagnosed June 20th with small cell after a biopsy. It all seems surreal.

thatblondegirl

Dear jelwz23,

I’m a visitor from the Uterine Board…and sometimes I post on the Ovarian board. My heart went out to you when I read your post. I’ve been where you are and it’s devastating. It really helps to find support here. Sadly, a lot of the boards are often pretty quiet and it might take a long time for someone to reply. I’m so sorry you are facing this awful disease.

I’m checking this board today because I am in the unfortunate circumstance of waiting for the results of a needle biopsy I had done last Wednesday. I had a head and neck CT in May for an unrelated reason. I was horribly ill with a respiratory infection, but went ahead with the appointment because I had waited over 6 weeks to get it. Uninvited, the radiologist read into my lungs and saw “multiple nodules or nodular consolidation.” I called my GYN/ONC and he wanted full chest CT. That report was even more upsetting and maddening…I’ve come to think most radiologists are lazy and incompetent….he reports…two “masslike areas,” both measuring a little over 2cm, and “presumably metastasis.” Presumably??? Infuriating. What??? He gets orders from an ONC, and assumes it must be metastasis. He offered no descriptors such as shape, luminosity, edges….nothing. Everyone is saying not to panic, but they are not me. My PCP and my cardiologist, both think it’s much ado about nothing. I know ONC is being diligent. I’m just heartsick at the idea that I’m having a recurrence or this might be lung cancer. The radiologist who did the biopsy didn’t say it outright, but it was clear he thinks it’s cancer.

I feel better than I’ve felt since I was diagnosed 3 years ago. I can’t believe I might be sick again.

I wish I could help you with knowledge of the particular drugs you are getting, but mine were different. Just remember not everyone’s body reacts exactly the same way. Just try to get through it. I hope you find some support here. The first 6-8 months after I was diagnosed the very first word in my head every morning was “Cancer!” I hated that! Finally that stopped being true. Well, until very recently. I hope it does for you, too.

prayers & hugs,

A

jewlz23

https://csn.cancer.org/discussion/comment/1706824#Comment_1706824

I will keep you in my prayers, A! I have come to depend on God in the last months as I didn't know what I was facing. My CT scans were vague at best. The last one done did say metastasis vs glomerular disease. The other scans just showed hilar lymph node swelling and mucous plugging right lower lobe, with metastasis as a possibility amongst sarcoidosis and TB. It wasn't until I made myself go to the ER on June 7th by ambulance from chest pain that they did another CT and this one showed up as nodules in left lobe, both hilar lymph swelling, subcarinal lymph mass, and the mucous plugging said something different but I can't remember the exact wording. Then I had the almost immediate bronchoscopy (which they put me out for) and that showed that I had small cell cancer throughout my right lung and it is all wrapping around a bronchial branch and inside the branch.

The chances of lung cancer being small cell is about 15-20% which is the worst kind to have as it grows quickly, but I have been a former smoker so that is why mainly. The others are staged differently from what they told me and grow much slower. I know everyone says not to worry, but it is hard to do, I know. So what are they planning on doing? It sounds like you need a bronchoscopy to be sure. I was frightened to death of the procedure but I was assured it would be okay and I had an Ebus bronchoscopy where they put you out for it. I woke up with a mild sore throat and coughed for a few days after some bloody discharge but it was not that bad at all.

As far as the scan results, I don't see how they can confirm it is cancer from a picture. They have to have labs so the radiologist was doing a poor job to write that...even the word presumably is not a distinct and accurate word. It either is or isn't. I hope you get this followed up on ASAP. Sometimes we have to demand it. If it were not for me going to the ER on the night I did, they wouldn't have followed up with me as fast as they did after that. That finally got me into a pulmonologist which I should had seen much earlier in the year.

The chemo meds I am on are a bit hard on my kidneys as well as heart, and I also just had the heart procedure where I had a stent put in my LAD heart artery that was blocked to the gills. What is worse I think is the plavix they have me on for blood thinners as I look like nothing but one big bruise right now. And my throat and stomach feel acidic and raw from the thinners. I take Dexilant but it isn't much help right now with the plavix and they actually fight each other so I have no idea what is going to happen there. I am letting go of a lot of the chemo fluids today finally and feel some better but my throat is still so raw. I have to cut out all things acidic and go with alkaline foods/drinks. So no more coffee for me and that is my favorite drink. This whole thing just sucks eggs.

My heart goes out to you too. Maybe we can keep each other sane while going through this shart. Gentle Hugs 4 You,

Sherri

thatblondegirl

Thank you so much for replying, Sherri.

Wow…you have really been through it. I’m so sorry. Thank goodness you got yourself to an ER and we’re able to be diagnosed. I really don’t know anything about your chemo drug, but it’s probably working on killing fast growing cells, which is why they affect hair follicles. I had what I called “regular chemo nausea,” which was pretty well controlled by meds, but I also had terrible nausea and spells of violent vomiting after every cycle about days 8-10. I learned that the cells of the lining of the stomach are also fast growing cells. It was preventing any food I might be able to eat from moving on out, so it remained for 12-15 hrs and then the violent vomiting. Always in the middle of the night. It was so acidic it burned my esophagus, throat, and mouth. One night I was on the back porch for a few minutes & didn’t quite make it to the grass when I vomited. In the morning my husband discovered that the concrete was etched. That’s how bad it was! You might try OTC meds (Prevacid) for stomach acid or ask for a prescription (famotidine?). My meds have not done my kidneys any favors, but mostly made me anemic. And the immunotherapy sent me to the hospital twice for blood infusions.

I think the reason they didn’t order a bronchoscopy was because my “masslike areas” are towards the outer edge, so “peripheral” (but not touching) of my right middle lobe….so not near or involving the bronchi. Would have been nice if one of the stupid radiologists had mentioned this, right? I only learned it when they did biopsy. They poked me about an inch SE of my nipple. I have small breasts, so I don’t know how that might have gone otherwise. (I’ve written a couple of posts about it on the Uterine board if you want more details!) Ironically, I went in feeling great, but as a result of the procedure ended up with lung cancer symptoms….chest pain, awful coughing, and when I breathe deeply or cough I can feel pain in my entire lung. Not happy.

I realized after I got home and viewed notes on my hospital portal that the radiologist who did the biopsy had incomplete information that might explain his bias about a possible recurrence. The document had an extensive description of a major surgery I had just last November. ONC was convinced from an inconclusive CT (they are ALL inconclusive!) that my cancer was back. We “have to go in.” No Cancer! But he removed 8” of my colon. It was tangled up & about blocked off with scar tissue from original surgeries. The info this guy had last week described all of it in detail, but was missing one VERY important detail….”No malignancy.” So, in his mind I just had a major recurrence less than 8 months ago. No…. I didn’t. All the radiology I had mentioned swollen lymph nodes in the center of my chest. This last guy did mention that they weren’t involved at all with the “masslike areas.” Well, thank goodness for one thing.

I’m desperately anxious to get my path report. With the holiday it may be late next week. I’m glad someone finally felt some urgency about your situation and started treatment. You can click on anyone’s screen name and read their profiles. I always had to fight like a dog to get what I want. I’ve hung around the ONC’s office for so long I use my seniority (and the fact that they’ve grown to love me!) to make stuff happen. I say, “I agree to do this on the condition that……otherwise, no…..” It works.

I hope you feel better. One thing I try to remind myself when I’m overcome with dread or worry…..The chances of me dying in a car accident (on the nearest interstate to us) are far greater than me dying of cancer anytime soon. So, do I really want to lose great days worrying? None of us perseverate about dying every time we get in a car, right?!

If you read my Uterine board posts, you’ll find that I bought a horse a few months ago. HE is keeping me sane right now! When I’m with him, doing things with and for him, cancer is the furthest thing from my mind. You have to stay on your toes with even the sweetest, most gentle animal if he weighs 1200 lbs! There’s a reason equine therapy is so effective!

Try to have a nice 4th. If you wanted to, you could always private message me! I don’t use my name here, because it’s public and my name is somewhat unusual. Hugs & Hugs,

❤️, A

jewlz23

Hi Blonde, I don't know how to private message? Let me take a look around here.

jewlz23

I found it! Private message at your door. Please don't take my humor sometimes offensive. I am just weird that way. I think I may have said something about titter but after thinking about it, I thought Oh my gosh! Anything comes out of my head these days. LOL

I read some of your profile. I am so impressed with your knowledge about your peritoneal cancer and the other that they found. You have really dug in and got some good details. I don't know a lot of the stuff you mentioned like the initials CA with a number? No one has told me anything like that? Now I wonder what questions I should be asking and instead of being a doormat, get into the nitty gritty of things.

I do know I am on Cisplatin and Etoposide for chemo with a ton of fluids in-between.

CharleyJ

https://csn.cancer.org/discussion/326718/small-cell-lung

My husband was diagnosed in March this year. It is a rough battle. We did 4 rounds of chemo (3 days in a row- 4th day was immunotherapy.) The hardest part was seeing the side effects. The staff was great in preventing the nausea and prescribing meds for the pain. But the psychological effects are the hardest. We finished that round in late June, beginning of August there was swelling in his neck and face- mid September 3 stints were put in his neck (one on each side and one in the chest). The lymph-nodes were enlarged with the cancer cells that it blocked the veins. I can tell you that he has not lost his hearing. After he had the stints put in he started radiation (10 days). Just met with the oncologist again and he let us know that the 1st line of chemo did not work as well as they had hoped. It did help with the cancer cells in the pancreas, but the cells in the lungs grew and it has spread even further. He starts this line 2 of chemo next week, scared to even think about the side effects of this new cocktail of meds. What I have read, he will be more miserable than the first line.

They only guess about how the side effects will affect each person. Depending on the spread of the cancer and the other meds you take at home, you may not feel anything than the sadness of loosing your hair. It took about 2 weeks for his hair to come out in huge clumps. With the first round of chemo, the hardest part is dealing with the anxiety of the unknown, the physical changes... as long as your doctor is helping you with the nausea, etc that can happen.

I have read that smlc responds its best during the first round of chemo. I hope that you have those results. I hope I didn't scare you, but I am sure you are a strong person with a strong desire to live. You got this, and never let anyone tell you otherwise.

Good luck,

CharleyJ

DavidONj

My wife had NSC but evolved into SC lung and has spread. She is also on Carboplatin and etoposide. I have noticed that I need to speak louder and "what" is her usual response. Oh well; what can I say. This whole experience is terrifying for her and me and gets her down most days. Sometimes I wonder if chemo is worth it and if the CHEMO is the one that will kill her. This may seem cruel, but before her 2nd line began in September, we were flying, visiting grandkids and kids and 4 weeks after this cocktail began, she sleeps most hours of the day. I wish you well during your experience.

thatblondegirl

Dear DavidONj,

I haven’t had etoposide, so I can’t speak to effects of it. But I’m enduring my second rodeo with cancer. I had Stage II Fallopian tube, secondary peritoneal in 2020. I had 2 surgeries and 6 rounds of paclitaxel and carboplatin. I took an immunotherapy drug for 2 years to successfully avoid a recurrence. Now, I have NSCLC. I’ve had 3 rounds of nivolumab, pemetrexed, and carboplatin. It worked! Two metastatic lymph nodes are gone, and my 2 little tumors have shrunk by more than half. I have my right middle lobectomy on Friday. Their intent: curative.

So…..that’s where I’m coming from! Trust me, I’ve had a really, really hard time emotionally with this! And suffered quite a bit physically, also…..although not nearly as badly as the first time. My biggest complaint has been fatigue.

I completely understand where you and your wife are right now. The first time I was so, so sick. I thought the chemo might kill me. And the two years with the immunotherapy was terrible! I had to have blood infusions twice because my hemoglobin was dangerously low. You can get so upset thinking you’ll never be well again…you’ll never be taking those trips and enjoying life. But YOU CAN! It IS possible! Once we got past that initial horror, we had many really great days….and enjoyed some fabulous vacations.

I just want to give you some hope! Your wife can get better! My husband spent plenty of time watching me lie on the floor in the bathroom in the middle of the night, and plenty of time sleeping days away. But I was able to recover! And now I just need to get this surgery done and recover from that! Aim for that light at the end of the tunnel!

I wish you both the best. Prayers.

😎, A