Lizzy

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

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

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

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

Hello again everyone, another quick update frome me. So since last posting here's where I'm at. The head issues - I've had 3 more fractional gamma knife sessions since last writing. No major reactions from each, just a panic attack during the first one with mask on. I didn't realize mask ones were done without any kind of sedation, so being fully aware of the pressure to my face as it expanded into the mask and feeling a bit smothered was a bit of a shock. But my oncologist presecribed me some adavan to take before going in to feel more relaxed. It has done its job wonderfully each time since. Two more sessions are scheduled before Christmas, then it will stop pending a new MRI/CT to see how much was actually taken and if anything else needs to be done at this point. Overall side effects have been numbness and tingling in my right arm, hand, and leg, with the occasional headache. No further seizures so Keppra is definitely doing its thing. The big tumor in the upper left lung lobe - started daily radiation for that this past Monday and that will continue daily Monday through Friday until 12/31, then they will evaluate how many more weeks will be needed to shrink it back, or if it has shrunk back enough to reach its goal of taking the pressure off my 3rd rib. Only real side effect has been itching (like when you get when you've gotten too much sunburn), and am using a topical cream to help with that. Chemo - overall had very mild side effects, mostly tiredness, and some of my bloodwork results have necessitated new meds to bring some things back into normal range. Has new med for the Edema my hands and ankles, and a new med to sooth the mouth and throat sores. So overall, everything is going to plan. My biggest thing is tiredness, but I'm making sure I am listening to my body and resting when I need to. If I don't get to post again before Christmas, wishing you all the very best for you and your families over the Holiday period. Lizzy

Hello again everyone, another quick update. Since writing last on Friday I had a seizure at 3am on Saturday as part of a reaction to Thursday's gamma knife treatment. Thankfully EMT and ER got me straight with Keppra and I pretty much came through unscathed but tired. Family arrived Sunday night from London, best medicine ever!! First chemo did proceed on Monday (minus Keytruda as planned). Yesterday wasn't too bad for side effects, I am hopeful that it continues to be kind, and I am on the 21 day cycle plan. Today I have another gamma knife session to the head at 10am EST. We are taking things day by day as we watch and learn the potential side effects from each of the treatments. Family is being absolutely brilliant. Right then, signing off for now. Am feeling the need to investigate the porcelain, a notion I guess you are ALL too familiar with. LOL. Thank you to everyone for your love and support, til next time, Lizzy

Hello Again, quick update from me and my neurosurgeon visit on Wednesday. He ordered additional images as he thought there was more to story than was being seen on taken images. He was correct. New CT showed the two MRI identified spots and 5 more. None were candidates for surgical removal due to either their locations, sizes or individual behavior problems, edema, hemmoraghing, etc. He felt whole brain radiation would be too risky to healthy parts, so proposed fractional gamma knife radiation to all 7 sites over 6 to 8 sessions. On Thursday he iradicated 3 small ones in one gamma knife session, and worked on the biggest hemmoraghing one. He said no more until next Wednesday to have rest up and watch the edema etc. But he and oncology agreed chemo is to start Monday (minus Keytruda for now - not sure why, oncologist will be going through that with me on Monday) before Chemo infusion because it was all a bit too much to take in yesterday after the gamma session and being so tired). Also getting tatted and marked up for radiation to the original mass from four weeks ago in the lung on Monday. That treatment will also run concurrent to chemo and gamma. Feeling very tired today but good in spirits. Best medicine so far... my son calling from England at 4am this morning to say he, his wife and my granddaughter are arriving here on Sunday while current travel/testing rules are stilll in effect between UK and USA until Monday. So, for me Christmas is coming early in my home this year through all of the wonderful medical people I am meeting, the efforts of everyone, and my family being here in about 48 hours from now.

Hi again and THANKS again to everyone. Update.. the chemo and the targeted lung mass radiation is temporarily 'on hold'. Got word yesterday that Friday's brain MRI showed two active masses, (left frontal lobe 2.2cm with edema and left temporal lobe 3.1cm with edema and hemmoraghing), so now neuro surgery is jumping in to deal with the brain issues first, and then I'll be back to the first plan (no biggie to wait for a week or two,biomarkers aren't in yet) First meeting/consultation with Neurosurgeon is TOMORROW. Feeling so looked after by all right now

@Lou, thanks so much for the perspective nudge, That's exactly what I needed. I hope the attachment to this message is OK to post, but it made me smile thinking about your piano learning whilst I'm wrapping up the Beethovan section of the French Revolution. 🙂

Hello again Everyone, quick update. They weren't able to biopsy the right adrenal gland mass on Tuesday due to it being too close to the diaphram and wrapping around a nerve bank, but they were able to get to the mass in my upper abdomen so those samples have gone off to be tested. On Wednesday, they implanted my medi-port and the post xray confirmed it was well positioned, So that's all good news. The xray did show that the lung mass has grown from 5.1cm to 6.2cm since the PET scan on Nov 9th which accounts for the ever increasing intensity of the pain behind my shoulder blade where the mass is pressing into my third rib. Am having a palliative blast of radiation of Tuesday to see if that can relieve some of the pressure and am seeing the palliative care Doctor on Wednesday as the Dilaudin doesn't seem to be helping much. Am excited for my appointment on the morning of Dec 2 with my oncologist who said by then my biomarkers shoud be back from the lung biopsy, and together with the results from this week's abdomen biopsy and today's scheduled brain MRI should give them a much clearer plan path. First Chemo date is still scheduled for the afternoon of Dec 2 as well but the exact cocktail won't finally be decided until after seeing the Oncologist that morning. So, medically I am really comforted by the professional care I am getting. Our hospital is part of the Walter Reed system, everyone is wonderful and the coordination and communication between everyone, and to me, amazes me. Mentally I'm feeling like Dr. Jekyll and Mr. Hyde at the moment. In relation to the cancer itself my mind is in a good place whatever the next steps are, but am having little pity party moments over things non cancer related, mostly frustration with it being the center of attention when people outside of the medical community talk to me, as it seems to be their only topic of conversation. I am more than just cancer, and in my party for one moments I just wish they could forget about it once in a while, and instead of asking me about it all the time, remember I am still the person I was before the diagnosis last week. Still that lunatic who went back to school last year at 55 to with a fanciful idea of getting a History degree, and am now in my second year with essays to write with upcoming deadlines. The French and German Revolution doesn't care about cancer, and I like that. 😄 But I have to remember they too are processing and hurting. Does anyone have any links to what I as the patient can do to emotionally support my family and friends as they cope with all this? Thanks so much! Lizzy

Hello Again Everyone, What a busy day! Had a very informative and supportive meeting this morning with my Oncologist, my freight train continues to roll... Diagnosis Stage IVb (T3 N2 M1c) Next up, Tues 11/23 biospy adrenal gland, Weds 11/24 - port being put in chest (Thursday 11/25 day off for turkey day) Fri 11/26 - Brain MRI Current chemo infusion plan to start w/c 11/29 is Carbo (AUC 5) +Pemetrexed (500mg/m2)+Pembro (200mg) unless Brain MRI shows positive, then drug plan will change. Also starting palliative care w/c 11/29 Feeling much more empowered tonight. Knowledge IS king. I truly appreciate my Doctor's openness today with everything. Kind and caring, and NO sugar coating. Again, thanks everyone, your support has been truly invaluable to me this week. Take care all. Will update again after brain MRI result known.

Hello Everyone, Thank you all so much for your kind words, practical advice, and shared experience. It means so much. Especially for helping me to formulate a list of points to ask the oncologist about, I am definitely not planning on playing Dr. Google. Update - yesterday I received a call with 1st appointment date with the oncologist, it's this Friday! And I've also been scheduled for a brain MRI next week. Feeling so fortunate to have this medical team around me. Thanks again All, Lizzy

Hello there, my name is Lizzy, 56, wife, mother and grandmother. Like everyone, I never expected to be looking at joining the club. 8 weeks ago my left shoulder blade started hurting, (akin to a pulled muscle feeling), 3 weeks ago went to my doctor as it was getting more painful. Since then xray, CT scan, PET scan and biopsy. PET scan lit up left lung mass, right aredenal gland, lymph nodes in chest, lymph node in neck, and soft tissue surrounding pancreas, liver, and upper abdomen. Got biospy result Friday night on the largest mass (5.5cmx5.4cmx4.1cm) - the lung. Adenocarcinoma. No other symptoms except for shoulder blade pain. Hoping for call from Oncology tomorrow for an initial appointment date to discuss what it all means and what the options are. I think I'm still in a twilight zone of knowing more than I want to already, and yet it has felt like the longest two days waiting for Monday. Thanks for listening. Lizzy