LouT Posted December 18, 2021 Share Posted December 18, 2021 Lizzy, You are going through some comprehensive treatment and I'm so glad to hear that you are not having severe reactions to the chemo or radiation. I look forward to hearing the results of your MRI/CT. Keep going as you're doing great. Lou Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted December 19, 2021 Share Posted December 19, 2021 Lizzy, I’m happy treatment is proceeding without adverse side effects. Let’s pray for good results! Stay the course. Tom LouT 1 Quote Link to comment Share on other sites More sharing options...
Lizzy Posted January 7, 2022 Author Share Posted January 7, 2022 Hello Everyone, and Happy New Year to you all. So, quite a bit has gone on since my last post but it is all good in the grand scheme of things. So to break it down into subject matter I think is the easiest. The 7 head mets and the gamma knife treatments. Apart from the seizure after the second gamma knife session on Dec 4, no further indicents and is taking Keppra. Had 7 gamma sessions altogether the last being on Dec 22. As the gamma keeps working for up to 8 weeks they will next do an MRI up there at the end of February to see where we are at with how many mets remain and if any further treatment is needed in March. The big tumor in my lung. Started targeted radiotherapy for that early December. Had 12 sessions in all, last one being January 4th 2022. It will keep doing its thing for another 3 weeks or so, so around the end of January they will do another scan to see how the tumor reacted. She did say that if it didn't shrink it back to where she is hoping for, she would probably refer me to the gamma doctor to look at Cyber Knife options. So looking at February for more updates there. The cancer/chemo. Chemo session #1 back on Dec 6 was very kind to me in side effects. Subsequent mouth and GI tract sores were treated with "Magic Mouth" compound before eating and it's been wonderful for the sores. Bloodwork Dec 23 showed need for magnesium, potassium supplements and Chemo session #2 set up for Dec 27 with Keytruda as my PDF1 showed immunotherapy was good to add the chemo itself. Bloodwork Dec 27 before chemo session showed large drop in red blood cells and overall hemoglobin. Two points away from need for blood transfusion. Chemo #2 cancelled and reappointed for Jan 6 with a goal to gain weight through high protein intake hoping for a knock-on improvement to red cell levels. Yesterday red blood cells showed to be going back the right way and a weight gain, so chemo #2 with Keytruda went ahead. Next session in 21 days. So all in all, medically I could not ask for better care and actions. My son and grandaughter from Britian were able to stay until New Year's Eve, that was so joyous! Medicine all in itself! In other life.... I made lists of what is important to me and how I plan to mentally stay strong which includes losing what weighs me down and what keeps me feeling like I need to be more than cancer regardless of prognosis. So, retired from my job effective 12/31. Huge weight lifted from my shoulders. Company had no sick pay/leave policy, hospital appointments were more important, so work has gone. University however is staying. It is actually something that gives me focus on more than just cancer and motivation to achieve and learn. I've come to terms with communicating with people and not being able to keep up with all of their preferred communication platforms. I set up an instagram page to put out info and updates. It's worked really well so far, a mix of silly and serious, people seem much more relaxed to talk about cancer now. So all in all it's going great in these first few days of January. I know the road is a long one unless an "uh oh" pops up, but I am feeling mentally and physically ready to walk the medical treatment path, time manage my university learning to make it fit around medical schedule (has a great tutor - compassion without pity), and a wonderful husband and son and we are all in sync about how we cope and communicate our fears, hurts, joys, to each other. So next 21 days looks like dealing with chemo #2 after effects, studying the German and Russian Revolutions and the Irish War of Independance that all were consequence of the aftermath of WWI. Right then, that's me up to date I think. Hoping everyone is doing well with their treatments! And thank you so much to the long-timers for their knowledge and the links they are sharing. Lizzy Susan Cornett, WalkingHorse, LeeLee1908 and 2 others 5 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted January 8, 2022 Share Posted January 8, 2022 Happy New, Year to you too and I hope things keep going in the right direction! There are inevitably bumps in the road during treatments but it sounds like your care is being managed well. When I was having treatment and recovering from it, I absolutely could not give any attention to things I didn't consider important or helpful. I couldn't clutter up my mind with nonsense. "Serenity now!" (from Seinfeld, lol). Thanks for your update. I hope you get good results from your treatments. Enjoy your studies! Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
LouT Posted January 8, 2022 Share Posted January 8, 2022 Lizzy, I read your whole post and couldn't be more impressed with all you've been through and the phenomenal headset you are bringing to this journey. It will serve you well! Thank you so much for posting your update. Now you have us all watching and waiting for your scan results. Please let us know once they're done. Lou Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Susan Cornett Posted January 9, 2022 Share Posted January 9, 2022 Lizzy - Happy New Year! So happy your son and granddaughter were able to visit. I know you enjoyed it. Your decision to get rid of things that weigh you down is so smart. I truly believe that the mental aspect of this fight is equally important as any medical treatment. You can focus on treatment and then have a clean mental slate when you finish treatment. LouT and Judy M2 2 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted January 29, 2022 Share Posted January 29, 2022 I love that you have taken swift action to focus on what feeds you intellectually and emotionally. Best wishes as you move ahead in your treatment. Karen LouT 1 Quote Link to comment Share on other sites More sharing options...
Lizzy Posted March 4, 2022 Author Share Posted March 4, 2022 Hello Everyone, just wanted to post an update on me. I've finished 4 rounds of chemo now and having a PET scan next week to assess where we are with everything below the eyes. But today I have some FANTASTIC news!!!! I had an MRI for the brain mets they did all of the gamma knife work on in December. All eight brain mets are gone! They successfully obliterated them all with just a few cavities left behind to show there was ever anything there!!!! No more treatment for now for the brain, just another MRI in three months to check everything up there. I am so happy I have been crying for an hour and wanted to share the news with you all. I'll let you know how the PET scan goes next week and what the next treatment steps are for the other areas where the cancer is, but tonight I am dancing on clouds. Thanks for listening and woo hoo... what a great day to be alive. Lizzy Tom Galli, Izzy, WalkingHorse and 3 others 6 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted March 5, 2022 Share Posted March 5, 2022 Lizzy, Hey, now that's good news. Love the sound of a brain met frying under intense radiation! Stay the course. Tom catlady91 and LouT 2 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted March 5, 2022 Share Posted March 5, 2022 Great news, Lizzy! So glad radiation was effective. LouT 1 Quote Link to comment Share on other sites More sharing options...
LouT Posted March 5, 2022 Share Posted March 5, 2022 Lizzy, Excellent news!!! So glad to hear this. Now you move on and forward. Lou LeeLee1908 1 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted March 6, 2022 Share Posted March 6, 2022 Excellent! LouT 1 Quote Link to comment Share on other sites More sharing options...
Lisa Haines Posted March 7, 2022 Share Posted March 7, 2022 Lizzy I wanted to wish you the very best and try to offer some inspiration!. I was diagnosed almost 7 years ago (this month) with Stage IV NSCLC Lung Cancer that had spread to my brain. I never had any warning or symptoms of Lung Cancer ,so it was a huge shock. It was the brain tumor and edema that caused me to see my PCP and have an urgent head CT Scan. Today thanks to ALL my treatments (Stereotactic Radiation for the brain tumor), the Chemo, following by Radiation to my chest and lastly Immunotherapy. I am now Stable/NED and doing well. I have been off ALL treatments for over 5 years and continue to remain stable. I did take Keppra for about six month while in treament for my brain tumor and it was very effective in keeping me seizure free. I was also on Dexamethasone (steroids for several months to keep the brain edema down and also help with chemo side effects. It too, worked well. I also have severe claustrophobia so the treament was a uge challenge for me, but I got through it. ❤️ I am happy to know you opted for a Port and always recommend them to folks who are having infusions. I still have mine and love using is for labs and contrast for my scans. I go in every 6 weeks for flushes! I was the same age as you at diagnosed and am very thankful and blessed to be a long term survivor and HOPE the very same for you. I never ever could have imagined I would be where I am today at that time -- and I'm so grateful to my team for finding the best possible treatments for me. Take care and be well. I wish you the VERY best! ~ Lisa PS: When I was diagnosed I did not have any grandchildren - something I had always dreamed of. Thankfully I have now been blessed with 3 beautiful grand-daughters and they have become my "littlest inspirations" and were a huge milestone in my life. They are pure JOY and LOVE! Tom Galli, BridgetO, LeeLee1908 and 4 others 7 Quote Link to comment Share on other sites More sharing options...
Lizzy Posted April 13, 2022 Author Share Posted April 13, 2022 Hello Again to Everyone! Thank you all so much for your comments and emojis of support these past weeks, and to Lisa - what a wonderful story to share, I am so pleased for you and your story is inspirational to me, thank you for that. So, my apologies for being MIA for the past few weeks, as you all know this disease takes you physically and mentally all over the place and the last few weeks has been an emotional and physical rollercoaster. The PET scan came back and to everyone's shock the following was observed. The primary mass in the lung reduced significantly (down to 3.7x3.1 from 5.5x5.4) with metabolic activity down from 27 to 3.1. The radiation rounds definitely made an impact there together with the chemo. All of the other masses and nodules (apart from the one in the right adrenal gland which is still growing slowly) have also reduced in size and metabolic activity with some of the prior soft tissue activity having disappeared altogether. My oncologist is truly blown away at these findings and levels. Going forward the plan is to do another PET scan in June at the same time as the MRI for the brain. No plans for any further radiation at this point. I am so grateful to all of the medical team whose treatment plan has allowed me to come this far, it is truly overwhelming to still "be here" and see some positive directions in the treatment to slow this thing down. Chemo. That is carrying on via a 21 day cycle made up from Keytruda and Pemetrexed. For the past few cycles I've been dealing with various elements of cytopenia, so as part of trying to get the white and red blood cells back in range and to attempt to minimize the other other chemo side effects, they have me on 50% strength on the pemetrexed. Round #7 will be coming up on April 21st and my Oncologist is hopeful I can go up to 75% so long as the blood counts support that. Physically, I'm tired a lot (anemia), and my stamina doesn't give me much leeway for anything more than pottering around the house and garden, so I am taking advantage of sleep and rest, but I'm also trying to not get into a rut of TV with more TV. Mentally, it's been rather strange to go from thinking about and planning my death, to move to thinking about the joy the day I wake up to can bring. Some things I find difficult (showering - cannot balance for the life of me) but that bring me the joy of a long soak in the bath instead. I'm on my final paper for this year's University study so I'm hoping to get that done and dusted while I'm in this good period of everything generally going in the right direction of slowing down the cancer spread. I can't believe the 5 month journey this has been so far with so many twists and turns, but here I am, 5 months in, with a working treatment plan, feeling mostly great except for the original pain in my back and extreme tiredness. I will never get over being so grateful for the medical team I have, and I treasure the moments I share with my hubbs (even the puking in the buckets moments) - yep you read that right - multiple buckets strategically placed around the house because we learned early on I was always in the wrong room). Take care everyone. If anything new crops up I'll let you all know. Thank you to each and everyone of you for your support to me on my journey. Lizzy WalkingHorse, Tom Galli, LouT and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted April 13, 2022 Share Posted April 13, 2022 Hi lizzy That's brilliant news I'm so pleased for you and hope you continue with the great results, I have had gamma knife radiosurgery for 2 brain mets and chemotherapy and radiotherapy for my lung cancer and lymph nodes I'm just waiting on a scan at the end of may so know how you feel about everything I also thought of planning and accepting my death but do feel differently now and want to live as long as possible so I'm up for any treatment offered, I wish you all the best and glad your feeling better Take care Justin x Izzy and Lizzy 2 Quote Link to comment Share on other sites More sharing options...
Mikey Posted April 13, 2022 Share Posted April 13, 2022 Hello Lizzy Your post is inspiring and just tells me that you are a person of great inner strength. I am early in my diagnosis and mine has been found early and I think my treatment over the next few weeks will lead to me being close to NED very quickly. So I am lucky so all I can offer to you is the emotional journey that I have gone through and til you find out the plan for the future! However the one thing I have learned not only from this, but also in life in general is the power of the mind and our brain. It is very hard in times of doubt to stop our minds thinking of the worst case. However I think we have all found that on the roller coaster we go from times of optimism to pessimism which can change on an hourly basis. I am not a religious person and have no great faith but I do have a belief in the power of our brains and how that can affect our lives. I would say to to you look at this positive progress and convince yourself that we are beating this intruder and I am going to win! Wake up with thoughts that I will win over you. Whilst you need the medical assistance I am a firm believer that your mindset can be one of the greatest contributors to your health. The brain is an incredibly powerful weapon so please use it it and stay positive and I wish you nothing but the best, Take care Mike Justin1970 and Lizzy 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted April 13, 2022 Share Posted April 13, 2022 Lizzy, You're a great example of the courage and strength that so many here learn to depend on to make this journey. I'm so glad to hear about the improvements and will wait to hear how they tackle that stubborn one in the adrenal gland. Please continue to keep us updated, but also keep living your life... that is the best medicine of all. Lou Lizzy 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted April 14, 2022 Share Posted April 14, 2022 Stay the course Lizzy! Lizzy and LouT 2 Quote Link to comment Share on other sites More sharing options...
Lizzy Posted May 30, 2022 Author Share Posted May 30, 2022 I'm sorry it's been a while since last posting. We've been puttering around and waiting for spring which finally seems to have arrived in Virginia. Been going every 21 days for chemo and had good and bad days. On Monday I started to vomit uncontrollably. They ran some checks on me through the week and on Friday the CT SCAN showed two large tumors in my lymph nodes above my stomach. Tumors are inoperable, placement of a feeding tube won't work, and radiation won't help. The adrenal gland tumor has also grown and my liver is not functioning properly. So, this is the end of my treatment journey. Yesterday I transferred over to in-home hospice palliative care for the time I have left which they estimate to be a few weeks. The medical team have all been so wonderful at the cancer center it was almost like saying goodbye to family yesterday. Now we work with the hospice care team. It's been wonderful to have this 6 months fairly active but now it's time to slow down and spend time with family. I think Leonard Cohen sums up best how I feel about what comes next. Dance me to your beauty with a burning violin Dance me through the panic till I'm gathered safely in Lift me like an olive branch and be my homeward dove Dance me to the end of love Dance me to the end of love Thank you to all of you for your support, encouragement and words of advice these past 7 months. Time now to be with family and cherish the opportunity to have enough time to say our proper goodbyes. Best wishes and success stories for you all individually on your journies, and please never underestimate the power of this group in helping people get through their diagnosis and treatments. What a fabulous bunch of people you all are! Lizzy Tom Galli, walfredo2001, Izzy and 3 others 1 5 Quote Link to comment Share on other sites More sharing options...
LouT Posted May 30, 2022 Share Posted May 30, 2022 Lizzy, I'm so sad to hear the outcome of your treatment and the need for hospice. My prayers are with you and your family. Lou Justin1970 1 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted May 31, 2022 Share Posted May 31, 2022 Lizzy, I'm very sorry you've reached this point. I hope that you get the best hospice care possible. Wishing you peace and comfort. Justin1970, Roz and LouT 3 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted May 31, 2022 Share Posted May 31, 2022 Lizzy, We all face this reality. Life has two certainties: it begins and ends. The length between for us tends to be shorter. When it is my time, I hope to face it with the grace and dignity you've displayed. It has been a distinct pleasure to have made your acquaintance. I pray for your peace. Stay the course. Tom BridgetO, Justin1970, Roz and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted May 31, 2022 Share Posted May 31, 2022 Lizzy I'm so sorry to hear your news I hope you can enjoy some great time with your family Justin x Tom Galli, LouT and Izzy 3 Quote Link to comment Share on other sites More sharing options...
Roz Posted May 31, 2022 Share Posted May 31, 2022 Lizzy, I'm so sorry to hear your news. I hope that you can spend the rest of your time with your family and friends. Wishing your comfort and peace, Ro LouT, Tom Galli and Justin1970 3 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted June 1, 2022 Share Posted June 1, 2022 Lizzy, I'm so sorry to hear about this development. Your decision for hospice seens like a good one. I wish you and your family comfort and peace. Justin1970, Tom Galli and LouT 3 Quote Link to comment Share on other sites More sharing options...
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