MyWifeSCLC Posted February 1, 2020 Share Posted February 1, 2020 My wife was diagnosed with limited stage (3) small cell lung cancer last week. She started chemo yesterday (Carboplatin and Etoposide). Today and tomorrow will just be Carboplatin then a week off. This will be repeated several times but with cisplatin every other time. Radiation will start at beginning of 2nd chemo treatment. I just wanted to get into the forum and begin to discuss the treatment. I have already read so much on line that it is overwhelming. This just sucks. Both me and my wife want to hit the cancer hard. Link to comment Share on other sites More sharing options...
Tom Galli Posted February 1, 2020 Share Posted February 1, 2020 Just sucks---perhaps the best description of lung cancer ever! Ok, limited stage small cell lung cancer (SCLC) and first line chemo and radiation. This treatment ought to hit it hard and I do hope it is successful. Here are a collection of insights about my encounter with lung cancer that may help. Your reading likely suggested that while all lung cancer had a high probability of recurrence after treatment, SCLC has the highest probability. Just several years ago, all one could do was hit it again with Carboplatin and Etopside but now immunotherapy is emerging as an effective treatment alternative. Be sure to ask your wife's doctor if immunotherapy might be an effective follow up treatment in the event of a recurrence. In the mean time, I hope your treatment experience is one and done! Stay the course. Tom Link to comment Share on other sites More sharing options...
BridgetO Posted February 2, 2020 Share Posted February 2, 2020 Welcome. I'm sorry to hear of your wife's diagnosis but glad to hear that she got on a treatment path so quickly. You and Tom are right- lung cancer sucks. I suggest that when you feel overwhelmed by internet info, that you take a break from it and do something else for a day (or more). There IS life with and after cancer. On this forum you'll find a lot of people who have good quality of life. I hope and expect that you'll hear from some people who have SCLC, who can give you the benefit of their own experience. Hang in there! All the best to you and your wife. Link to comment Share on other sites More sharing options...
Donna G Posted February 2, 2020 Share Posted February 2, 2020 I had NSCLC but I was treated with Cisplatin and Etopside. and daily radiation. Did your wife get a port ? That treatment was potent against my tumor. I have survived. Please keep us posted on how she is doing, Donna G Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted February 2, 2020 Author Share Posted February 2, 2020 My wife couldn't find a bed in Knoxville immediately so the initial hospital (can't do chemo and radiation) found a bed much further than we live. They didn't start radiation immediately because we would want it closer to home. When the second chemo starts she will get a port and start radiation at Thompson's local site in Sevierville as outpatient. Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted February 2, 2020 Author Share Posted February 2, 2020 I believe "chemo brain" started yesterday afternoon and is really rampant this afternoon as my wife is getting her 3rd and final daily chemo until next week. This is going to take some getting used to. Fortunately she understands when I tell her she said something incorrect or out of character to me or the nurses. Don't know that I mentioned she is in the hospital until her sodium levels are under control. Na started dropping last night and today so our planned return home tomorrow is in jeopardy. She was admitted due to disorientation and her Na was 114 and BP at 212. Na was slowly brought to 130 a couple of days ago before dropping as mentioned. BP has hovered in the 150's. Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted February 3, 2020 Author Share Posted February 3, 2020 Good meeting with my wife's chemo doctor this morning. I certainly had things mixed up in my head. There is 3 weeks between chemo instead of 1. Etoposide is all 3 days and Carboplatin on 1st day. Carboplatin was prescribed on 1st set of chemo because of the lesser need for fluids. Her sodium levels are apparently tied to too much liquid intake which is really needed for Cisplatin. If sodium gets under control then Cisplatin would be given during next round. Also Doc says too early for "chemo brain". Odd behavior probably due to other factors. Link to comment Share on other sites More sharing options...
BridgetO Posted February 3, 2020 Share Posted February 3, 2020 I thought it sounded unlike chemo brain, but then I'm not a doctor. I've known a few people with chemo brain and it seems like they experience some memory and concentration and at times having difficulty with tasks they used to take for granted, but not generally odd or seriously unusual behavior. I wonder your wife's issues could be caused by the low sodium, or related to steroids if she got them with chemo. Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted February 3, 2020 Author Share Posted February 3, 2020 Low sodium is the assumed cause because it had just dropped after being above 130. It is now 129 and the effects are gone so the sodium was probably it. They are now giving her a very expensive pill (forgot the name) to better regulate the sodium. She will get this 3 times a week until the cancer related hormone (forgot that name too) lessens. Link to comment Share on other sites More sharing options...
BridgetO Posted February 4, 2020 Share Posted February 4, 2020 I'm glad to hear they sorted out the cause. Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted February 12, 2020 Author Share Posted February 12, 2020 Just over a week after my wife's 1st chemo - There are sores in her mouth, she doesn't want to eat much (stuff tastes awful), smell sensitivity is crazy, and she is kinda weak. All in all, we feel good so far. Met with cancer center this past Tue and they indicated next chemo is expected to have more side effects with cisplatin instead of the carbo she just had. Radiation will start then so we will figure it out! At least her blood pressure is back to normal with the Apresoline meds. Na is still low at 132 so she is still on 2000ml liquid restriction. I guess the Samsca meds are controlling the Na. Unfortunately, 3 more meds were added. Her white blood cell count was "gone" so she is taking the antibiotic Cipro. She now has Zolfran for nausea and vomiting which has not occurred yet. I'm sure next chemo will require it. Mycostatin for swishing around the mouth sores. PET scan is tomorrow ... I guess this is the "sho nuff" test of where the cancer is! Will keep posting how she's doing and what is happening. Anyone seeing something odd or just want to add something, please feel free to do so. My hope is to hear something that we may have missed and should be aware of. I'm pretty good at research but have already been surprised. Link to comment Share on other sites More sharing options...
TJM Posted February 13, 2020 Share Posted February 13, 2020 Wishing you the very best. I'll be following your posts because I am about 1month behind you. I start the same treatment first week of March. Funny thing is....I'm not so much dreading the treatment. Won't be fun but I'm confident I'll get thru it fine. Still relatively young and healthy. What I am already dreading a bit is the waiting after treatment is done. But one step at a time. Peace Tom Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted February 13, 2020 Author Share Posted February 13, 2020 Thx for your reply TJM ... another engineer here. Will provide commentary on wife's side effects to chemo. Are you getting radiation too? Link to comment Share on other sites More sharing options...
TJM Posted February 13, 2020 Share Posted February 13, 2020 The plan is for radiation as well but doc needs approval from cancer board. I want it and he seems confident. What sucks is I have to go into downtown Portland for the 5 minute blast (or whatever it is) 5 days a week. Guessing doing that drive daily will make the Chemo/Rad look easy. Good luck and keep us all posted. Link to comment Share on other sites More sharing options...
BridgetO Posted February 13, 2020 Share Posted February 13, 2020 Hey TJM, who's your radiation onc? I assume you're at the Kaiser Radidation Oncology Center. I had Dr Deming, who was wonderful. All the staff there were really nice. I had those long courses of radiation for two different cancers (neither of them lung). One course was with concurrent chemo. I lived to tell about it! (obviously, since I'm not writing from the Other Side).Fortunately, I didn't have to drive as far as you Hang in there! Link to comment Share on other sites More sharing options...
TJM Posted February 13, 2020 Share Posted February 13, 2020 Dr Ellis is my oncologist I know several Nurses at the facility and they all tell me he is excellent. To be honest would rather have a women....probably a mommy thing :)... I get to go to the new facility in Hillsboro to get my port installed. Sunnyside booked thru first week of March. I guess "business" is good. Haven't been to Hillsboro yet. Be nice if I could do it all in Longview. Tom Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted February 16, 2020 Author Share Posted February 16, 2020 Yesterday my wife's hair started falling out. That's 15 days after her 1st round of chemo started on Jan 31st. Maybe the PET scan on Friday pushed the hair over the edge ... just kidding ... him maybe not. I think I reacted more to her hair falling out than she did. Her sister said head bands and covers are in order so she would see about them. We go see the radiation doctor for the first time tomorrow. I guess she will get the cancer area marked up on her chest. The sores in her mouth are gone and she is feeling much better. I guess that means 1 week to enjoy this until her 2nd round of chemo starts Tuesday week. Her 1st radiation treatment starts next week also. Link to comment Share on other sites More sharing options...
BridgetO Posted February 17, 2020 Share Posted February 17, 2020 Yep, sometimes hair falls out. When I was in treatment for a non-lung cancer, mine fell out. I actually wasn't as concerned about it as I was about all the other side effect I was having, sike neuropathy, vomiting and so forth. I thought the hair loss was "interesting" It also gave me a chance to indulge myself by buying some cute hats and scarves. I bought a (cheap) wig, had it styled, and wore it a couple of times. It was sort of fun buying it- a friend went along with me and we were pretty entertained. But I felt more comfortable in the hats and scarves. When the weather was chilly, I slept in a soft cotton hat. When my chemo was over, I found an advantage to being hairless-- It was a lot easier to go swimming. And hair does grow back. Here's a true wig story to entertain you. A friend of mine lost her hair with chemo and always wore a really nice wig. One day while she was driving, a quite young driver ran into her car. Her wig flew off and landed on the gear shift lever. The young woman driver was in a panic- for a moment she thought my friends HEAD had come off. Everyone recovered quickly, even the wig. Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted February 18, 2020 Author Share Posted February 18, 2020 Thx BridgetO ... my wife reads my posts and she really enjoyed your post about wings, etc. Saw radiation doc for 1st time. She had PET scan results which confirmed previous staging. However, she indicated a few spots in the right lung that weren't previously there ... they will keep an eye on them but said could be due to coughing and inhaling stuff. This didn't help so I will be talking to onc this week. Radiation mapping occurs tomorrow. A port goes in on Thu. 30 days of radiation is the plan and expected to be every weekday until complete. Radiation starts Tue week with 2nd round of chemo. Link to comment Share on other sites More sharing options...
TJM Posted February 18, 2020 Share Posted February 18, 2020 Thx for the update. I will be paying close attention and I wish you both the best. To. Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted February 20, 2020 Author Share Posted February 20, 2020 My wife is wearing a ball cap today. Yep ... a whole lot of her hair came out today. She ask me to comb out as much as possible. It hurts having your wife cry for anything but this one was rough for me! She never wears ball caps but I thought she looked pretty darn good. She did remind me that BridgetO said it would be less fuss for swimming in our pool. (Thx again BridgetO) Steve Link to comment Share on other sites More sharing options...
BridgetO Posted February 20, 2020 Share Posted February 20, 2020 When my hair started falling out in clumps, I got it buzz cut as short as possible, just to have done with it. Never had a buzz cut before-- it was kind of an adventure. Caps, hats and other headwear can be fun. I had some instructions for making a headwrap out of the body part of a T-shirt. I don't think I ever wore it out of the house, but it was an interesting project. Another thing I did was go to a workshop called Look Good Feel Better, free and geared to women in cancer treatment. They give each participant a bag of makeup and skin care stuff and showed us how to use it to help with changes from cancer treatment. I'm not much for wearing makeup, but I love free stuff and getting together with other women in the same boat was good. So I guess I'd like to say to your wife, when you can, try things that are different (like the ball cap) and maybe even a little out of your comfort zone. While you're dealing with treatment, these distractions can help you get through the days and sometimes even smile. Hang in there, both of you! Link to comment Share on other sites More sharing options...
Steff Posted February 20, 2020 Share Posted February 20, 2020 Steve- Shaving my mom's head in our cold garage was a tough one for me, but I was happy to do it for her because she didn't want a hairdresser fussing over her when she wasn't feeling that great. My mom decided to shave her hair when she felt too much like a shedding dog. She found her hair in her food one day and that was the end of the hair. My mom and I keep very short hair, so losing it wasn't a big deal to her. She did get a free wig, but only wore it once. She had lots of fun head wraps, like Bridget - some came from the infusion room where she got her chemo drip - they had lots to choose from for free. What she wore most was a really soft winter hat - she lost her hair in March, so her head was very cold. She even wore the cap to bed to keep her head warm - something your wife might think about. A funny story we like to tell is when her eyelashes decided to fall out - my mom has never worn much makeup, but we were attending a Billy Joel concert and she wanted to dress up a bit, so she decided to apply mascara. I heard a scream from the hotel bathroom and out she came with the mascara brush with most of her eyelashes attached! We laugh about it now, but at the time it was traumatic for her - luckily she had the piano man to help her forget about it all! Another thing you might want to share with your wife is that my mom's hair came back curly - my mom always has had very straight hair. She got to enjoy curls for about 6 months, which she loved! So, your wife may end up with some hair she has always wished for at the end of this, even if it is just for a short time. Also, the hair on my mom's legs never grew back - she loves that during pool season! Take Care, Steff Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted February 20, 2020 Author Share Posted February 20, 2020 Port is in ... I never thought to Google it. It's under the skin ... I thought it would look like a typical I.V. thing that goes in your arm vein. It's pretty neat ... you just feel for 3 bumps and the I.V. needle, etc. inserts in the middle when needed. Steve Link to comment Share on other sites More sharing options...
TJM Posted February 20, 2020 Share Posted February 20, 2020 They are cool as long as they dont get infected and are properly flushed from what I read. I get mine put in next Tuesday. I am confident it will be far better than getting needled everytime. Peace Tom Link to comment Share on other sites More sharing options...
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