mam12198 Posted May 30, 2020 Author Share Posted May 30, 2020 Hi, I'm so sorry I've been away sort of, I live in the town that had the murder by that UConn kid and it is heartbreaking. My Petscan was really good. My treatment is working how it is supposed to, it killed the 4 lymph nodes and 5% on my spine and the last two treatments including this past Tuesday's treatment is now working on the lung tumor. They said my tumor is still stable and also the activeness went from a 14 down to a 12. They did a tumor marker blood test and our lab range is 0-5 and I was a 9.2 which I'm guessing is pretty good. This week they upped my steroids because my s/e's are really bad and today is the first day off of them Praying it got me through the worst BUT it's working so I'll get through it. I'm happy to hear you were able to go visit and live a normal life for a while. I will pray your scans results are excellent!! Keep fighting my friend!!!! Link to comment Share on other sites More sharing options...
Lin wilki Posted June 3, 2020 Share Posted June 3, 2020 Finally I got a good scan! Says tumors dying from the inside. Doc was very pleased and expects more progress at next scan I will relax for now. Arizona family coming here in July. I love when they come here cuz I know plenty of places to go unlike Arizona which I am unfamiliar with. So no more scans until they’re gone. Happy summer for now Link to comment Share on other sites More sharing options...
mam12198 Posted June 3, 2020 Author Share Posted June 3, 2020 I’m so happy for you!!!! Since I have chemo brain, what treatment are you on? I want a CT scan but then I don’t if that makes sense. My Petscan was in April and showed all cancer but my quarter size lung tumor was there. Stable and activeness dropped, tumor marker blood test was 9.2, my lab is 0-5. Guessing that’s good. You enjoy your family and summer!!!! Link to comment Share on other sites More sharing options...
Lin wilki Posted June 3, 2020 Share Posted June 3, 2020 My target med is Kadcyla. I have been waiting for this drug for awhile. My oncologist was trying all other things first. I only know one other person in the forums on this drug. She's been stable for 2 years, but now she has brain mets. Damn lung cancer! You just keep treating until you run out of options. FYI The PET scan really tells you more! I had a CT and a PET in December. The CT didn't sound bad, but the PET showed how much had uptake, so it proved progression at the time. Enjoy your summer and keep in touch. Link to comment Share on other sites More sharing options...
mam12198 Posted June 3, 2020 Author Share Posted June 3, 2020 Hi, I’m getting a port put in as the chemo is damaging my veins. They want to get it in before the 16th, next chemo. I’m fine with it. Keep me posted on your scans and enjoy your summer!!! Link to comment Share on other sites More sharing options...
Lin wilki Posted June 3, 2020 Share Posted June 3, 2020 Yes I had to get a port early on. So glad not to get stuck so many times looking for a vein Link to comment Share on other sites More sharing options...
Lindsay Posted June 3, 2020 Share Posted June 3, 2020 Hi I'm new here. I was diagnosed just before Christmas of 2019 with stage 3b adenocarcinoma at the age of 31 as a never smoker. It was an incidental finding on a x-ray that my GP thankfully sent me for, and confirmed with three separate biopsies. I'm in the mid level for PDL1 expression and have ROS-1 genetic markings. I've been through 30 rounds of radiation and 3 rounds of cisplatin and pemetrexed. I have just started a journey with immunotherapy durvalumab. I'm so glad to have found this group as I felt really lost and alone. I've joined a group in Canada for young adults with cancer, but have been looking for a group of specifically lung cancer patients. Link to comment Share on other sites More sharing options...
Lin wilki Posted June 4, 2020 Share Posted June 4, 2020 Welcome here! Sorry that you have to be here but many people here to support you You might want to look into the biomarker group here also Link to comment Share on other sites More sharing options...
mam12198 Posted June 4, 2020 Author Share Posted June 4, 2020 Welcome and I’m sorry you have to be here. Great people, great support and information. Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted June 4, 2020 Share Posted June 4, 2020 Hi Lindsay, I'm sorry to hear about your diagnosis but glad you found us. Did you have biomarker testing done? Did they find any mutations? Link to comment Share on other sites More sharing options...
Lin wilki Posted July 22, 2020 Share Posted July 22, 2020 Mam12198 Just checking in with you. We had grandkids from Arizona here for a visit. I was a little nervous about them being in my house! We tried to be outside as much as possible I’ll be waiting another week to be sure we did not get Covid! I will have scans in 3 weeks to make sure Kadcyla is working. I’m pretty nervous since I don’t feel great. Coughing, breathless, wheezing. Nothing terrible actually pretty much the same since treatment started last year. My PA said we’re hoping you get to baseline- which means how I felt before treatment. Ever since I started treatment the various side effects really effect my day to day life How are you managing your treatments? In this summer of Covid do you find you feel more isolated? Here in Illinois you can go inside a restaurant but cases are rising so I won’t be doing that. I’m just tired of this virus! hope you are doing well Link to comment Share on other sites More sharing options...
mam12198 Posted July 22, 2020 Author Share Posted July 22, 2020 I’m happy you got time with the grandkids!!! I’ll pray no Covid!!! I was tested a while back as I had a port put in. My last treatment hit me hard and caused leg weakness and pain and the middle of my back. I don’t know if my body needs a break from this chemo as a side effect is muscle pain and weakness. I’m also out of breath when my legs feel 500 lbs. I’ve never been out of breath but it goes away within a minute after sitting. I will bring this all up Monday when I see my Dr on Monday, the day before chemo. Stay safe and keep me posted on you!! Link to comment Share on other sites More sharing options...
Lin wilki Posted July 22, 2020 Share Posted July 22, 2020 Your symptoms sound very similar to mine. I just had treatment yesterday and every muscle in my body aches. I always feel like I’m walking underwater! I’m trying to stay a little active but I’d I have a busy day the next day I am exhausted! If my scans are good it’s worth it. I’ll follow up. Scan and results August 11 Link to comment Share on other sites More sharing options...
mam12198 Posted July 29, 2020 Author Share Posted July 29, 2020 Hi, I had my appointment Monday and my Dr said my back/leg muscle pain could be from Docetaxel and steroids or sciatica. Dr said 7 treatments of Docetaxel is a lot so she gave me this week off. Dr is doing a mri tomorrow and then a CT Friday. I’m praying this Docetaxel did something good since my pet scan in April was good. I go with expect the worse but pray for the best. Maybe I’ll get my chemo changed to something less strong. We will see as chemo is next Tuesday. Keep me posted on your scans when you hear!!! Link to comment Share on other sites More sharing options...
Lin wilki Posted July 29, 2020 Share Posted July 29, 2020 HI! A week off from chemo might be a good thing for you. I will be praying you have good scans! So, my family from Arizona has been gone almost 2 weeks - pretty sure no COVID! I am trying to stay a little active. Some nights it cools off outside, then we can take a little walk. I am praying for good scans for you! I feel like you = expect the worse, and pray for the best. I have scan in 2 weeks. When I saw my PA at my last appointment, I told her I was really nervous cuz I sure don't feel better. She said not worse though, right? True I have had dry mouth, cough, etc and body aches for most of my treatment, so I guess it's the same. I just would really like to feel BETTER!!! I will certainly follow up - scan result with my oncologist will be August 11 Link to comment Share on other sites More sharing options...
Roz Posted July 29, 2020 Share Posted July 29, 2020 Hi Mam12198, I don't think it's necessarily a benefit to have the lung lobes removed. Everyone's case is unique. I had my lower left lobe removed in 9/2017 and my upper right lobe removed 10/2017. They got all the cancer and the masses were 8+ and 9+ cm in size. I had chemo and then the cancer recurred. They tried a phase I clinical trial with the personal cancer vaccine plus Tecentriq in May-June 2019 but it was stopped because I had 35% progression in the cancer. So, basically I have been waiting for a slot in a Phase I trial for a long time. There is no treatment for my kind of cancer (NSCLC-mucinous adenocarcinoma KRAS G12D)...So, waiting is all part of this process. My cancer has continued to grow and is in both sides of my lungs but it's considered a more gradual growth and I'm asymptomatic. Let me know if you have any questions and best of luck to you! Take care, Ro Link to comment Share on other sites More sharing options...
mam12198 Posted July 29, 2020 Author Share Posted July 29, 2020 Evening, was your post supposed to go to someone else or is my chemo brain making me forget about lobe removal. Sorry as I don’t remember talking about that. I’m sorry about your kind of lung cancer. Link to comment Share on other sites More sharing options...
mam12198 Posted July 29, 2020 Author Share Posted July 29, 2020 Lin, I wished I had the strength in my legs that went away this past treatment so that is why the mri tomorrow and Friday is the CT. So I will pray for all of us!!! Link to comment Share on other sites More sharing options...
LexieCat Posted July 29, 2020 Share Posted July 29, 2020 32 minutes ago, mam12198 said: Evening, was your post supposed to go to someone else or is my chemo brain making me forget about lobe removal. Sorry as I don’t remember talking about that. I’m sorry about your kind of lung cancer. I think she's referring to your comment to ColleenRae that you were jealous she could have a lobectomy. I think Roz was simply noting that lobectomy isn't necessarily the best treatment for everyone. My interpreter services here are free. 😁 Link to comment Share on other sites More sharing options...
mam12198 Posted July 30, 2020 Author Share Posted July 30, 2020 LOL thank you for your interpreter services!!! It was so far back my brain didn't remember. I do apologize to Roz. Link to comment Share on other sites More sharing options...
Roz Posted July 30, 2020 Share Posted July 30, 2020 No problem!! Thanks for explaining it LexieCat! Ro Link to comment Share on other sites More sharing options...
Lin wilki Posted August 14, 2020 Share Posted August 14, 2020 Mam. Ct scan good. Tumors are dying. So I asked my oncologist why am I the only person on all these forums with HER2 amplification? She just said I’m a unicorn! Anyway she said Kadcyla is working for me so be happy. I’m trying not to think about what’s next - cuz I know it will stop working at some point My side effects are fatigue , muscle aches and mostly dry mouth. It changed the taste of everything I eat or drink. I find it difficult to live with. Oh well at least I am LIVING! Right? Link to comment Share on other sites More sharing options...
mam12198 Posted August 19, 2020 Author Share Posted August 19, 2020 CONGRATS on the scan!!!! That is wonderful that the tumors are dying!!! Thankfully the Kadcyla is working but I feel for you about the taste buds as I had that and it was miserable. I started radiation yesterday. Every day for 14 days. It's just a pain driving down there (45 minutes) because I have to find people to drive me since I still have the Docetaxel side effects in me and it's been 3 weeks since I've been off of it. My Dr took me off of it as the CT showed my tumor grew "slightly", she said like two strands of hair put together but it grew in length and that won't be good down the road. The MRI showed nothing on my back which was great, that 5% cancer that was left, the chemo did kill that. I also have no new cancer. Because of the all of that and how rough on my body the Docetaxel was on my body, she stopped that. The tumor board met and I'm getting the radiation I was supposed to start with back in Oct. but because of the back tumor removal I couldn't, so now I'm getting zapped. I didn't sleep well Monday night as I saw midnight and past so I was really tired when I got home at 2pm. My appts. are now all at 9am so this way it's done early. My legs and back are still sore so I guess it muscles that I have to work on the strength. You take care and I'm so happy your scans were clear!!!! Link to comment Share on other sites More sharing options...
Lin wilki Posted August 19, 2020 Share Posted August 19, 2020 So glad they took you off docetaxel. It will be good to have those side effects gone i still have many tumors left and Kadcyla is effecting my heart - severe artery calcification. Have echo before next appointment so will find out what they do about that sounds like your making headway in your cancer fight. You will be left with side effects from radiation but it is usually quite effective Keep plugging away! Link to comment Share on other sites More sharing options...
mam12198 Posted August 19, 2020 Author Share Posted August 19, 2020 Well that isn’t good if your med is affecting your heart but it’s working. Have they mentioned a different med for you. I’m hoping not many side effects, they mentioned fatigue which I already have still and possible indigestion which I had severely during chemo. That’s all they mentioned because of where I’m getting zapped. Keep me posted on what your test results are. Link to comment Share on other sites More sharing options...
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