Barb1260 Posted September 6, 2019 Share Posted September 6, 2019 Sorry to hear this Bob. After all that. I’m crossing my fingers that it’s not a recurrence. Robert Macaulay and DFK 2 Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 6, 2019 Share Posted September 6, 2019 Oh Bob- I’m so sorry about this news! We’re running a marathon here so let’s think of this as just a little sprint to push to the next mile. Maybe some high tech zapping is on the what’s next list. It’s time for the prayer warriors on the forum to ENGAGE for the founding member of the Durva Club. We’re all here for you. DFK and Robert Macaulay 2 Link to comment Share on other sites More sharing options...
DFK Posted September 6, 2019 Share Posted September 6, 2019 You are all in my prayers every waking moment......but for RonH and Bob, extra blessings please.💕😇🙏🏻 DFK Robert Macaulay 1 Link to comment Share on other sites More sharing options...
Roz Posted September 6, 2019 Share Posted September 6, 2019 Bob, I'm sorry to hear this news but still holding out hope that perhaps it is not a recurrence. I hope the PET scan shows that all is well!! Take care, Ro DFK and Robert Macaulay 2 Link to comment Share on other sites More sharing options...
Opal Posted September 7, 2019 Share Posted September 7, 2019 I 2nd DFK's message above. Bob, you're the leader of the Durva pack..... no Que Sera Sera this time. Instead believe in miracles! Think positive. Opal DFK 1 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted September 7, 2019 Author Share Posted September 7, 2019 Opal My thoughts are the Durvalumab done one excellent job of stopping any progression and they have caught this possible recurrence at the original site early so i have no concerns there and from what i read there are lots of treatment options for recurrence at the original site.Thinking her plan is to let this settle take another CT then needle Biopsy followed by pet scan and then hopefully targeted therapy depending on the results, Those decisions are up to the doc and as long as the are giving me treatment i am happy. The break is just fine by me. Bob Kleo, PaulaC and DFK 3 Link to comment Share on other sites More sharing options...
Tomm Posted September 7, 2019 Share Posted September 7, 2019 more info on Manuka honey.. the label UMF rating is the most reliable grading system for Manuka honey. The brands have to meet extremely strict standards of UMFHA to obtain the license. UMF certified honey brands are generally expensive but trust me, it’s worth it. Below are the individual benefits of each UMF level: UMF 5+ to 9+ : Doesn’t have a high Methylglyoxal count, meaning very low antibacterial activity. Best for regular use as a healthier alternative to refined sugar and artificial sweeteners. UMF 10+ to 14+ : Honey rated above 10+ is known as Active Manuka Honey. The range between UMF 10-14 possess mild therapeutic effect and is suitable for treating minor cold and fever. UMF 15+ to 25+ : If you are purchasing Manuka honey for treating specific health issues, don’t settle for anything less than 15+. From heartburn, painful sinusitis, high cholesterol, tooth decay to heartbreaking skin breakouts, a high UMF rated Manuka honey is a one-stop solution to all these problems. RonH... Please keep us informed and join in anytime.. your more than welcome, you paid your dues and your in the Club. Barb.. way to go on #10 , your port didn't let them draw blood and when I finished my last infusion and took out the port and started to go home and felt something wet, blood just going down my shirt to my pants.. easy fix but the opposite of your issue? They got a bit upset when I put some on my face... I'm a bit of a smart a**. Rower Michelle, DFK and Barb1260 3 Link to comment Share on other sites More sharing options...
Tomm Posted September 7, 2019 Share Posted September 7, 2019 Bob ..unless you know different at this time I believe you are cancer free, enjoy your freedom. I may have asked before but if you don't mind telling what your PDL-1 expression is? DFK and Barb1260 2 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted September 7, 2019 Author Share Posted September 7, 2019 Tomm I have no idea what my PDL-1 expression is, Have heard it mentioned numerous times over last year but never bothered as such. DFK 1 Link to comment Share on other sites More sharing options...
Opal Posted September 7, 2019 Share Posted September 7, 2019 Bob, please keep us posted. Thanks for info on options. DFK 1 Link to comment Share on other sites More sharing options...
PaulaC Posted September 8, 2019 Share Posted September 8, 2019 Bob, you’ve got this! I’m sending positive thoughts your way. Take Care Paula Robert Macaulay and DFK 2 Link to comment Share on other sites More sharing options...
Tom Galli Posted September 8, 2019 Share Posted September 8, 2019 Bob, I am sorry I missed your post. I'm wondering if stereotactic radiation (SBRT) might be helpful in blasting the met, if indeed it turns out to be a met. Stay the course. Tom DFK 1 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted September 8, 2019 Author Share Posted September 8, 2019 Tom She mentioned radiation option in that area again and she will discuss that option with the team next week, If i get anymore radiation i might be candidate for Los Alomos New Mexico. I am fine with what ever plan they come up with and that the cancer has never spread thanks to Durvalumab and feel in very good health as the side effects are in decline from that drug. .Seven hours straight sleep last night. Bob DFK, PaulaC, Roz and 2 others 5 Link to comment Share on other sites More sharing options...
RonH Posted September 8, 2019 Share Posted September 8, 2019 On 9/6/2019 at 9:04 PM, Robert Macaulay said: Opal My thoughts are the Durvalumab done one excellent job of stopping any progression and they have caught this possible recurrence at the original site early so i have no concerns there and from what i read there are lots of treatment options for recurrence at the original site.Thinking her plan is to let this settle take another CT then needle Biopsy followed by pet scan and then hopefully targeted therapy depending on the results, Those decisions are up to the doc and as long as the are giving me treatment i am happy. The break is just fine by me. Bob Bob, I regreted to hear of the possible reoccurrence at the original site of your cancer. I guess we're both heading down similar paths. Although I never quite made it to NED, I was real close, with my previous CT's indicating very positive responses to the Chemo, Radiation and Immunotherapy. Actually my last CT a few weeks ago indicated virtually nothing active in almost all of the previous sites as well as the lymph nodes "disappearing", except there was in indication of probable activity/progression in one of the previous sites in my right upper lobe. I was then taken off Durvalumab after Infusion #18 two weeks earlier. I had a PET scan a week ago which indicated the lymph nodes had no uptake at all and one of the tumors had no activity either and was now "probably" only scar tissue. Unfortunately, one of my original tumor sites decided to glow with a positive response. While still not 100% sure, it is highly likely that I have progression in the one location. I have been scheduled for a lung needle biopsy a week from tomorrow for confirmation. (I have to be off my blood thinners for a week before they will do the biopsy due to the possibility of an uncontrollable bleed). By the way, here it is the Interventional Radiologists who do the Lung Needle Biopsy procedure whereas it is the Pulmonologists do the fine needle aspiration bronchoscope biopsy procedure. My understanding is where and what they are trying to biopsy determines which method they use. I've had both before and this will be my second lung needle biopsy through the rib cage. I had very similar thoughts as you regarding the Durvalumab. As I was finishing the chemo and radiation and the Med Onc said that he was going to start me on a recently approved Immunotherapy drug called Imfinzi/Durvalumab for Stage 3A NSCLC patients, I of course then read every bit of information I could on it. Much of which I didn't understand the medical side of, but what I did understand was that it had been seen in the trials while likely not being a cure in itself, it had been found to significantly increase the PFS (Progression Free Survival) in many NSCLC patients. It was clear to me from the beginning that the PFS was measured in months not years or decades, but that it did help so many. I for one was grateful for the possibility of any extension of time and couldn't help think where I would be if this had occurred 5, 10 or 20 years ago! Early on, my Med Onc trying to explain things to me in simple terms, was that the chemo was used primarily to weaken and kill some of the cancer, but it was the radiation that did the majority of destroying the cancer cells and that it keeps working for months after the radiation has stopped due to the damaged DNA of the cancer cells preventing them from replicating. While there was a possibility that the Durvalumab would keep me NED for a long time, it likely was not a cure in itself and it was likely that progression at some time would occur. I was diagnosed almost 17 months ago now and have been grateful for every day that I've had, but plan to continue to fight for every additional one possible. What Durvalumab did was to give me time to get my affairs in order, so I could concentrate on fighting even harder. As I mentioned in a previous post, and as Tom just mentioned, my Onc said that based on the PET Scan and the location of the only active site, depending on the biopsy results/confirmation, that I may be a candidate for stereotactic radiation. I am all for trying to "fry" the SOB. Anyway, I will stay in contact here as it appears that we're heading down similar paths. Best wishes to you. Stay strong, you've always been an inspiration to many here and will continue to be! -Ron Robert Macaulay, Tom Galli and DFK 2 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted September 9, 2019 Share Posted September 9, 2019 Got my CT 2 1/2 weeks early today because of chest and back pain since Friday night. PA almost certain the chest pain is due to the hiatal hernia discovered on my post radiation PET CT in April. Back pain in same spot as the post radiation pain. They are not sure why it’s there again but maybe it’s from the radiation? Let the waiting begin. At least I don’t have to worry about going for the next 2 weeks, it’s already done. Now I get to add a gastroenterologist to my repertoire. Joy Tom Galli and DFK 1 1 Link to comment Share on other sites More sharing options...
DFK Posted September 10, 2019 Share Posted September 10, 2019 Bob and RonH-thank you for sharing your continued journey. I am sorry you're having to contend with all of this but both of you appear, despite the emotional setback of having to "go there" again, totally committed to doing whatever needs to be done to "take care" of what needs to be done. You both got this covered and my prayers are with you every step of the way....never forget that. Truthfully and sadly, it is also a wake up call for all of us Durvalumab users. I had negative molecular markers, not even a itsy bitsy bit so I do ponder the effectiveness of receiving a monoclonal antibody that blocks the interaction between PD-L1 and PD-1. I know the literature states that having PD-1 is not contingent for the success of longer progression free survival, but it is food for thought. I am 12 months from Stage 3B diagnosis and everyday I tell myself I am getting well, I am on my way to perfect health. I truly believe in intent and hope. On the day that I met my oncologist, he perfunctionally and pragmatically laid it all out on the table. A very scary scenario, but I'll never forget his words when going over my treatment plan with Durvalumab.....”The medication can be curative". I just about fell off my chair as Lung Cancer and curative were never used in the same sentence. I know the percentages, I know the risks.....and I pray, pray, pray. So, all of us here are rowing that same boat.....to get to the finish line with longer PFS and OS. We can all do this.....some paths may be circuitous, others a little straight and narrow but I know, we are the pioneers that are pushing for and obtaining PFS and OS and eventually, a cure. Barb1260-Damn, I just got a G.I. referral too because of my voice issues and my oncologist thinking it may be delayed radiation esophagitis affecting my vocal chords.....he also giggled and said waiting for an ENT referral (3 months) is obscene and maybe G.I. can have a look sooner than later. So I just scheduled my looky loo upper g.i. scope for October 1st. I too have intermittent back pain and thoracic pain but have been chalking it up to life in the post chemo and radiation lane. You never know what to think or how long and hard to pursue these symptoms with your doctor. Interesting times for all of us. You all are in my prayers..... With Blessings and Gratitude, DFK Tom Galli, RonH and Barb1260 2 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted September 10, 2019 Share Posted September 10, 2019 Thanks DFK. My voice is different also. Guess I’ll ask about that also. I’m going with the post radiation pain factor myself. Keep positive DFK 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted September 10, 2019 Share Posted September 10, 2019 Only thing on the CT results is a 5mm nodule in my left lung that wasn’t there before but PA said they will watch it. Waiting to hear from the doc if this means the Imfinzi isn’t working. I can’t take this stress DFK 1 Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 10, 2019 Share Posted September 10, 2019 Barb- everything about scans just sucks. The pre-anxiety, getting poked and then the results. Yuck. I've got a tiny node (like 4mm) that they've been watching since my 1st CT scan last year. Nothing's moving so they are not worried about it. @MBinOregon had some great advice, don't open the umbrella unless it's raining. Hang in there- any good spa appointments in your schedule? Prayers for you my friend... DFK, Roz, Barb1260 and 1 other 4 Link to comment Share on other sites More sharing options...
Barb1260 Posted September 10, 2019 Share Posted September 10, 2019 For some reason I can’t react to anything. DFK 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted September 10, 2019 Share Posted September 10, 2019 No spa, just a day at the lake Tomm, Roz and DFK 3 Link to comment Share on other sites More sharing options...
Laurel Posted September 10, 2019 Share Posted September 10, 2019 The stress is ugly. I go to youtube.com and do little 5 minute meditation videos. It calms me a bit. Soft hugs to you. Roz, DFK and Barb1260 3 Link to comment Share on other sites More sharing options...
DFK Posted September 10, 2019 Share Posted September 10, 2019 Barb1260-So sorry about newly found 5mm nodule. Let your medical team do what they need to do to work it out and you stay away from that dark place until you know what you’re dealing with. In the meantime, as anxiety provoking as all of this is, you take care of yourself in whatever fashion you need to, that has worked in the past, to bring you to a place of peace and hope. You've got this. You're a great comfort and support to others, now is a time to comfort and support yourself. Stay positive 🙏🏻❤️🙏🏻❤️.......DFK Barb1260 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted September 10, 2019 Share Posted September 10, 2019 Thanks DFK. I guess it was just shocking as I had the pain on the right which turned out to be nothing. I guess I should be greatful for the fact that the original tumor is smaller than July. You are such a positive person. I try to be, sometimes it’s difficult in this LC world. 🥳 Roz and DFK 2 Link to comment Share on other sites More sharing options...
DFK Posted September 10, 2019 Share Posted September 10, 2019 Barb1260-Shocking is putting it nicely....I myself have a few choice adjectives that I use when I need to express my "disappointments". I try to stay positive and in the "light" because the dark places I can go to is nasty and not conducive to where I need to be. My husband is supportive but he, being of the testosterone variety, always try's to find a solution, or a path to work things out. Sometimes there is no path or working out our emotional disappointments, but you and I know, we've ridden this ride before and we're still here, and we can do it again. Get those stretched out big girl panties and put‘em on again.....laugh, cry, and stay in the light of positive healing vibes. You can do this Barb, one minute at a time, one hour at a time, one day at a time. Keep us posted with updates. Sending you ❤️ DFK Charles, Rower Michelle and Barb1260 3 Link to comment Share on other sites More sharing options...
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