Michelle L Posted October 17, 2020 Share Posted October 17, 2020 Hi, I’m Michelle. I was first diagnosed with NSCLC - adenocarinoma in December 2011. It was surgically removed and I had chemotherapy as a precaution afterwards. I had another VATS surgery in December 2014 to remove new cancerous nodules. I was cancer free until my 5 year scan in December, which revealed cancer in both lungs. I started on Carboplatin, Alimta and Keytruda and am now on maintanance with Alimta and Keytruda every 3 weeks. CT scans have remained stable. So far scans have remained stable. 🙏 Link to comment Share on other sites More sharing options...
Michelle L Posted October 17, 2020 Author Share Posted October 17, 2020 1 minute ago, Michelle L said: Hi, I’m Michelle. I was first diagnosed with NSCLC - adenocarinoma in December 2011. It was surgically removed and I had chemotherapy as a precaution afterwards. I had another VATS surgery in December 2014 to remove new cancerous nodules. I was cancer free until my 5 year scan in December, which revealed cancer in both lungs. I started on Carboplatin, Alimta and Keytruda and am now on maintanance with Alimta and Keytruda every 3 weeks. CT scans have remained stable. So far scans have remained stable. 🙏 Link to comment Share on other sites More sharing options...
GaryG Posted October 17, 2020 Share Posted October 17, 2020 Hi Michelle. Welcome and we are very glad you joined. Since we are on the same regimen I hope we can help each other to overcome this terrible disease so if you have any questions please do not hesitate to ask. Can you please explain how many infusions of the maintenance treatment (Alimta and Keytruda) you have taken? Also when you say the scans remained stable, did you mean the tumor size remained the same? What is the plan going forward? Any chance for surgery or radiotherapy to remove the remaining tumor? What side effects are you having if any? I wish you the best. Link to comment Share on other sites More sharing options...
Michelle L Posted October 17, 2020 Author Share Posted October 17, 2020 40 minutes ago, GaryG said: Hi Michelle. Welcome and we are very glad you joined. Since we are on the same regimen I hope we can help each other to overcome this terrible disease so if you have any questions please do not hesitate to ask. Can you please explain how many infusions of the maintenance treatment (Alimta and Keytruda) you have taken? Also when you say the scans remained stable, did you mean the tumor size remained the same? What is the plan going forward? Any chance for surgery or radiotherapy to remove the remaining tumor? What side effects are you having if any? I wish you the best. Thank you Gary. This was my first post here so I’m still learning to navigate everything. It is nice to talk to someone else with the same regimen. i would have to go back and count to get an exact number but I started treatments on February 6th, 2020 and I have gotten them every 3 weeks. The treatments included Carboplatin for the first 4 cycles. Initially, while receiving Carboplatin, the tumors shrunk a little. Since being on maintenance with Keytruda and Alimata, the tumors have not grown, they have remained the same size. No one has mentioned the options of radiation or surgery. From what I understand, since it returned and is stage VI (luckily it is in both lungs but has not spread outside lungs), it is considered incurable and this regimen is best. I get scans every 9 weeks. I know the plan is to be able to stay on this regimen for 2 years. I have many questions myself, such as what about radiation or surgery, what about after 2 years...? I am arranging a second opinion at MD Anderson now. I want to know all possible options and know I’m doing everything I can. Side effects have been swelling hands and around my eyes, itching, mostly on hands and arms. My hands are leathery and peel with dead skin. Also I do have some minor bouts of nausea and some fatigue. All are manageable and I’m still working full time. I was upset, and we all are, to find out my cancer returned after being cancer free for 5 years. I’m 53 years old... Can you please tell me about yourself and what your course of treatment has been/is? I wish you the best, as well. Link to comment Share on other sites More sharing options...
Judy M2 Posted October 17, 2020 Share Posted October 17, 2020 Hi @Michelle L, so sorry to have to welcome you but you've come to the right place. I only have experience with chemo (carbo and taxol), radiation and Tagrisso and not with your maintenance drugs and can't speak to those. I just want to encourage you that lots can happen in 2 years due to rapid advances in research. In fact, the science is changing so quickly that some oncologists have a hard time keeping up. This site and the GO2 Foundation are excellent resources for us. You've chosen a good second opinion. I hope you get some clearer answers soon. You'll certainly get support from everyone here. Link to comment Share on other sites More sharing options...
GaryG Posted October 17, 2020 Share Posted October 17, 2020 Michelle: I post everything in detail about my journey, treatment and results under the section "Chemotherapy" titled "Triplet", "Triplet first scan" and "Triplet second scan". There are also other discussions under "Triplet" about side effects and other subjects. As for your current results being stable is a win /win situation because the possibilities of arriving to "no evidence of disease (NED as we call it here)" increase with time. There are so many clinical trials and new drugs coming up every day to raise one's hope. Getting a second opinion is also a great idea especially from a reputable group like MS Anderson. Currently I am scheduled for a scan after 6 weeks because I just started on the maintenance schedule and will be posting the results under "Triplet 3rd scan". I would like very much to keep track of your results and status along with other patients (and we have few) on the same regimen so please do not hesitate to post, ask questions or chime in on any conversation. The "TRIPLET" is becoming the standard for many of us and it will be beneficial to gather as much knowledge as possible to help others. Thank you and I wish you the best. GaryG Link to comment Share on other sites More sharing options...
Michelle L Posted October 17, 2020 Author Share Posted October 17, 2020 1 hour ago, Judy M2 said: Hi @Michelle L, so sorry to have to welcome you but you've come to the right place. I only have experience with chemo (carbo and taxol), radiation and Tagrisso and not with your maintenance drugs and can't speak to those. I just want to encourage you that lots can happen in 2 years due to rapid advances in research. In fact, the science is changing so quickly that some oncologists have a hard time keeping up. This site and the GO2 Foundation are excellent resources for us. You've chosen a good second opinion. I hope you get some clearer answers soon. You'll certainly get support from everyone here. Thank you Judy. I will look at the GO2 Foundation as well. Thank jade not heard of that one. Link to comment Share on other sites More sharing options...
Michelle L Posted October 17, 2020 Author Share Posted October 17, 2020 29 minutes ago, GaryG said: Michelle: I post everything in detail about my journey, treatment and results under the section "Chemotherapy" titled "Triplet", "Triplet first scan" and "Triplet second scan". There are also other discussions under "Triplet" about side effects and other subjects. As for your current results being stable is a win /win situation because the possibilities of arriving to "no evidence of disease (NED as we call it here)" increase with time. There are so many clinical trials and new drugs coming up every day to raise one's hope. Getting a second opinion is also a great idea especially from a reputable group like MS Anderson. Currently I am scheduled for a scan after 6 weeks because I just started on the maintenance schedule and will be posting the results under "Triplet 3rd scan". I would like very much to keep track of your results and status along with other patients (and we have few) on the same regimen so please do not hesitate to post, ask questions or chime in on any conversation. The "TRIPLET" is becoming the standard for many of us and it will be beneficial to gather as much knowledge as possible to help others. Thank you and I wish you the best. GaryG Thank you for the encouragement, Gary. I will look under the the section “chemotherapy.” I just joined a day or two ago and am figuring it all out. I definitely want to connect with others and keep track of each other’s status and accomplishments... I have already learned a lot and it is encouraging reading all the success stories... Link to comment Share on other sites More sharing options...
Deb W Posted October 17, 2020 Share Posted October 17, 2020 Welcome, Michelle. I am on the same regimen. I had the triplet and I've been on maintenance now with Keytruda/Alimta since August and will continue with that until February. The plan then is to drop the Alimta and keep me on Keytruda until 2 years from the date of maintenance. Stable is good! Deb Link to comment Share on other sites More sharing options...
Rower Michelle Posted October 17, 2020 Share Posted October 17, 2020 Hi Michelle, Welcome to the group. I was 51 at diagnosis. I’m wondering did you ever have the comprehensive biomarker testing? Many people diagnosed under the age of 50 have some type of gene mutation that drives the cancer. A second opinion is a great idea and depending on what type of lung cancer you have a third opinion wouldn’t be unreasonable. For example; my husband’s employer has a free second opinion program at the Mayo Clinic and I have AlK Positive NSCLC so I would see an ALK expert at the University of Denver too You will find lots of great people here. Michelle Link to comment Share on other sites More sharing options...
Michelle L Posted October 17, 2020 Author Share Posted October 17, 2020 3 hours ago, Rower Michelle said: Hi Michelle, Welcome to the group. I was 51 at diagnosis. I’m wondering did you ever have the comprehensive biomarker testing? Many people diagnosed under the age of 50 have some type of gene mutation that drives the cancer. A second opinion is a great idea and depending on what type of lung cancer you have a third opinion wouldn’t be unreasonable. For example; my husband’s employer has a free second opinion program at the Mayo Clinic and I have AlK Positive NSCLC so I would see an ALK expert at the University of Denver too You will find lots of great people here. Michelle Thank you, Rower. Yes, I did have the biomarker testing. I cannot remember all the names of biomarkers but know, for my mutation, they said the regimen I’m on is the best option. There is not a “pill” for my specific mutation. I need to read it all again and remember everything. Are you one the same regimen or something different? Link to comment Share on other sites More sharing options...
Rower Michelle Posted October 18, 2020 Share Posted October 18, 2020 I have a mutation that has a pill therapy available. I had one dose of the regiment you’re taking while waiting for the biomarker results. Every year there’s more options available so it’s important to try to keep informed about the scientific developments. They’re happening so fast our doctors can’t keep up- which is great news for us! Michelle Link to comment Share on other sites More sharing options...
Sabacat Posted October 18, 2020 Share Posted October 18, 2020 Welcome, Michelle. I, too, am on the triplet. Diagnosed end of July 2020 and began treatment September 1; having my 3rd round on Monday. Unfortunately, I also suffered a mild stroke a couple of weeks ago but am recovering quickly so hope that won’t interfere with treatment schedule. While in hospital I got my scans a bit early, but saw some encouraging trends toward shrinkage. There is a great group of positive thinking folks here with a tremendous combined knowledge base. Susan Link to comment Share on other sites More sharing options...
Lisa Haines Posted October 18, 2020 Share Posted October 18, 2020 Hi Michelle, Nice to meet you, but sorry that it's because of Lung Cancer. I wish you the very best with your treatment and hope it's totally successful. Immunotherapy was a life saver for me and I'm now happily "Stable" off all treatment and doing well. I was diagnosed at Stage IV in March of 2015. Take care and again, Welcome!! Link to comment Share on other sites More sharing options...
Michelle L Posted October 19, 2020 Author Share Posted October 19, 2020 On 10/17/2020 at 11:49 PM, Sabacat said: Welcome, Michelle. I, too, am on the triplet. Diagnosed end of July 2020 and began treatment September 1; having my 3rd round on Monday. Unfortunately, I also suffered a mild stroke a couple of weeks ago but am recovering quickly so hope that won’t interfere with treatment schedule. While in hospital I got my scans a bit early, but saw some encouraging trends toward shrinkage. There is a great group of positive thinking folks here with a tremendous combined knowledge base. Susan Sabacat am sorry to hear about your mild stroke but glad you are recovering quickly. Also, seeing shrinkage is great news! Hope are you doing on your treatments? Are you having any side effects? I have some but pretty minor and tolerable. Link to comment Share on other sites More sharing options...
Michelle L Posted October 19, 2020 Author Share Posted October 19, 2020 On 10/18/2020 at 1:47 PM, Lisa Haines said: Hi Michelle, Nice to meet you, but sorry that it's because of Lung Cancer. I wish you the very best with your treatment and hope it's totally successful. Immunotherapy was a life saver for me and I'm now happily "Stable" off all treatment and doing well. I was diagnosed at Stage IV in March of 2015. Take care and again, Welcome!! Nice to meet you, Lisa. I wish you the best too. It is very encouraging to hear you are stable and doing well:) Do you mind my asking what type of lung cancer and if it was contained in your lungs? Mine is in my RML (I had a RLL lobectomy in 2011) and LLL. My brain MRI was clear, thank goodness and no lymph nodes are affected. 🙏 Link to comment Share on other sites More sharing options...
Michelle L Posted October 19, 2020 Author Share Posted October 19, 2020 On 10/17/2020 at 1:42 PM, Deb W said: Welcome, Michelle. I am on the same regimen. I had the triplet and I've been on maintenance now with Keytruda/Alimta since August and will continue with that until February. The plan then is to drop the Alimta and keep me on Keytruda until 2 years from the date of maintenance. Stable is good! Deb Thanks, Deb. I’m wondering, has your doctor mentioned what the plan is after you finish Keytruda? Link to comment Share on other sites More sharing options...
Sabacat Posted October 20, 2020 Share Posted October 20, 2020 Hi Michelle, Just had my 3rd infusion yesterday. Side effects have been pretty manageable to date. Constipation was problematic the first time, but I got a plan in place before the second to prevent that and refined it since then. However, as LexiCat has reported, the Zofran that they give us on chemo day is still going to kick in. That, along with less exercise on the day before (driving 4 hours) and day of (doc visits, infusion and driving 4 hours home) make a little inevitable. I have mild nausea on the first day with no steroids (Day 3 post-infusion). I had a bad reaction to the drug they gave me the first time (Compazine), tried the Zofran the second time but that was before Lexie's post and on the same day as my stroke. I think I'm going to try to tough it out without drugs this time (if it occurs). Hair started significant thinning a week or so after the second infusion. Seems to have slowed down now. Keeping fingers crossed. If it gets worse, I'll probably be in wig shopping mode. If it's not freshly washed and blow-dried, I can see bare scalp on the upper back of my head. The last thing may or may not be related to the chemo. My right lower leg was affected by the stroke and has been improving steadily. A lingering effect is the feeling of a stirrup (think 60's stirrup pants) under the heel and sort of numbness interspersed with tingling in the calf. That *could* be neuropathy, but who knows. I've also had intermittent numbness in the small toes of both feet but, honestly, I think I had that prior to diagnosis. Hope that helps! Link to comment Share on other sites More sharing options...
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