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  1. Today
  2. Ron, Whoopee! let's all do the happy dance! Grahame, and a second happy dance for you! Bridget
  3. jack14

    Tens unit

    PS The TENS unit I have works fairly well but it is limited. I need something else. Preferably eliminating the cause. I am researching pain management and have been learning some interesting things about it. Like the use of a certain class of drugs that block the creation of memory. Like Versed....interesting process
  4. jack14

    Tens unit

    I use it off and on for this chronic aching in my shoulder and arm. Never heard it was contraindicated in cancer? I mentioned it to my Onc once and she didn't indicate any concerns. I am exploring other avenues in regards to pain management. I have used heat and vibration, tens, muscle relaxants, and now Motrin, which I prefer over a narcotic because opioids lock me up.
  5. jack14

    Keytruda

    Thanks Lisa and Gary. So glad to hear of your success Lisa! It is very encouarging and I pray that all of us here end up in the same boat as you. As for my arm and shoulder pain, it has returned with a greater intensity and duration and was interfering with my sleep! I don't like opioids because they lock me up. So now, reluctantly, I am taking Ibuprofen 400 mg every twelve hours, and it is helping with the pain. I actually slept most of the night for a change. My Onc approved it. NSAIDS are hard onthe stomach and I am not on blood thinners other than my daily 81 mg aspirin and fish oil caps. I hope to be able to wean off it ASAP. As for the chronic constipation....ughhh jack
  6. Yesterday
  7. The summer hummers are out in force today. It was a very hot afternoon when this male black-chinned (top pic) and female (bottom pic) black-chinned hummingbird stopped for a sweet treat. Used 1/2000 shutter speed and F8.0 at ISO 1000 to stop their otherwise blurry wings.
  8. Hi MimiP, I'm sorry to hear about your dad's advanced stage diagnosis. I understand that he had been tested for various mutations, but has he had his PD-1 or PD-L1 levels tested? This can be an indicator of how well the cancer might respond to immunotherapy. However, first line treatment for advanced stage is often immunotherapy and 2 chemos. My mom was on the same treatment protocol for her NSCLC recurrence - Keytruda/Pembrolizumab + Carbo + Alimta/Pemetrexed. This treatment "cocktail" is often referred to as a triplet. My mom had very good results with this treatment, as had many others no matter what their PD-L1 percentage is. You can find my documentation of her first year in treatment here. She received 6 infusions of the triplet and then went on to Keytruda only for about 1 year. She did have some side effects from Keytruda (rash, GI issues, fatigue) and the usual side effects with chemo. My mom saw immediate results, but that isn't always the case. I am a big fan of the triplet and know it to be effective with many advanced stage NSCLC folks. Hope this helps a bit. Take Care, Steff
  9. May2

    Keytruda

    So glad to hear about your good response. I hope remaining side effects will continue to resolve. Thank you for sharing. Would you mind sharing with what NSCLC mutation you had. Thank you.
  10. Tbaker

    Tens unit

    My doctor ok's it 😊
  11. GaryG

    Keytruda

    Hi Jack: Sorry to see you having a hard time. It seems none of us is immune to side effects. I am having issues with appetite as well. My oncologist gave me a pill called MIRTAZAPINE 15MG that I take before bed time. It takes few days before it starts working and also a liquid called MOGESTROL ACETATE ORAL SUSPENSION 40mg/ml That I take daily before lunch. I am finding that eating helps ease a lot of other symptoms. You might want to ask your doctor about the medication. I hope you do better soon.
  12. What sessions is everyone most excited to attend? You can see them all listed here: https://lungevity.donordrive.com/index.cfm?fuseaction=cms.page&id=1784&eventID=947
  13. Of course, when Bill Gates secretly microchips us all, he can fix it. 🤣
  14. Susan, You are very welcome and I'm happy to know my experience has provided you some encouragement. There are MANY long-term LC survivors or who living long lives and the treatments have increased greatly over the last 5 years. Believe me, at the time of my diagnosis, it was pretty grim and at that time (before Immunotherapy) the five year life expectancy was pretty alarming, but I never focused on that and was determined to beat it. I also had an amazing Oncologist and she never tried to put a time frame on my life. She said for day one that while we may not "currently" have a cure, we have treatments and I will continue to use any and all treatments available for you. I adored her and feel she saved my life. Unfortunately, she moved away for a wonderful career Op and is not more into research, but we will email and IF there is anything I have questions on, I still reach out to her. We will look forward to hearing from you and will be her to continue to offer support -- the people here are wonderful and LUNGevity is a very special group. I feel very fortunate to be a part of it. Lisa
  15. Lisa Haines

    Keytruda

    Jack, I am a patient who was on Immunotherpay (Nivolumab) as my second line treatment (Stage IV NSCLC) and like you, I had side effects that would come and go. Back at the time I was on it we were on a weight based dose, and then over time that changed to a Flat Rate dose of 240 mg every two weeks (for me the weight based was lower, so I never moved up to the higher dose) just to be safer. Later, then they approved a second schedule which was 480 mg every 4 weeks and that was something I never wanted. My feeling (just my personal feeling) was that if I was having side effects on a lower dose, that moving to a high dose and having it all in ONE infusion would likely make things even worse. I know several others who felt the same way and one of us every opted to change our dose/schedule. I had relentless fatigue and nausea quite often and felt very "wiped out"...it was pretty rough and for me I found it harder than chemo. I also have significant GI issue that would come and go, belly pain, sometimes constipation and other time diarrhea that would last a day or so. We did think it may have been immune mediated colitis, but thankfully my abd scans were fine. I eventually was given an RX for Lomitil, which helped with the pain and cramping and also had Zofran to take for the nausea. I also had to learn that naps and extra rest were required, otherwise I felt even worse. My Oncologist also gave me two treatment breaks to try and let my body rest and that too helped for a time. A little later, I started developed low-grade Pneumonitis (another know side effect), but it was asymptomatic and found only on routine CT Scans. Because it was low grade it also never met the criteria for treatment with Steroids. After my third bout my Oncologist decided it was time to stop the Nivo permanently, or at least long term. Thankfully, by that time it has worked very well and I was stable. I had my last infusion on 8/31/16 and have been "OFF" treament every since and remained stable. We do not tract my CEA, as it was never an accurate marker for me and always was in the normal range (even when I had progression) for some folks, it's not very helpful, but for others it can be. Long story short, I've now been OFF all treatment for almost four years and I am still Stable and "living life". I still fatigue, not sure it'll ever fully resolve, but I can live with that. No longer have any GI issues and never had any LC symptoms. My Oncologist is thrilled with my results and told me just last week that he sees this as a long term and very durable response and does not expect it to change I do have some lingering Ground Glass Opacities, but they have improved and do not cause me any problem. For me, I feel the Immunotherpay was a life saver and despite the side effects, was WELL worth it. I'd do it all over again today if I knew it would give me the same results. Hoping you can get though the side effects and that you too will do very well. Best wishes, Lisa PS: I did develop low grade hypothyroidism and that was treated with low dose Levothyroxine. They also monitored my Thyroid and Cortisol levesl thoughout treament, as those can contribute to fatigue. In my case, it's complex because I also have Fibromyalgia and significant degenerative disc disease. Currently pending my second hip replacement surgery, which has been on hold because of Covid and is due to happen in few more weeks. I also had a lot of muscle/joint pain on Nivo, but with Fibro and the DJD, it was almost impossible to know if that was from the Immunotherapy or the other conditions.
  16. Thanks, Lisa! I can't imagine having a brain tumor AND an LC diagnosis at the same time -- that must have been BEYOND frightening!!! I can't tell you how comforting it has been to hear from so many of you who are doing well MUCH longer than I dreamed possible when we first got this news. This is definitely a wonderful place! Hoping that a repeat echocardiogram tomorrow to check the status of my pericardial effusion will come back at least no worse than 2 weeks ago, then no more tests until, hopefully, a treatment plan on the 21st. 🤞 In the meantime, I feel so much better just being here. 😻
  17. Welcome and sorry to hear you are facing a recurrance. I do wish you the very best and hope you'll soon have all your testing results so that you can move forward and do whatever is needed to treat this. I was diagnosed at Stage IV in March of 2015 and was never a candidate for surgery, but thankfully have done very well with the treatments we know have available. I've also been through one recurrence and know how scary that felt. Thankfully, that's when I moved on to "Immunotherpay" which had just been FDA approved and it's been a life saver for me. I'm now stable and have been off ALL treatment for almost four full years. Just had scans last week and my Oncologist is thrilled with my long term results and expects me to continue to do well for a very, very long time. Best wishes to you - lots of great people in this group who will be happy to provide you support and encouragement. Lisa
  18. Dear Susan, I too am a Stage IV NSCLC Survivor (now 5 1/2 years in, stable and living life). I do remember very well exactly how scared and overwhelmed I felt when I was first diagnosed. I ended up with a Brain Met and that's how my cancer was found, when it suddenly caused Neuro changes. An urgent Head CT found the Brain tumor and I spend the next week in a Neuro Unit having all kinds of testing done - turned out it was a met from Stage IV Lung Cancer and I begin treatment a few weeks later. I had to treat the Brain Met first and that was done by Stereotactic Radition and was totally successful, but just having had a brain tumor was a very frightening experience, especially because it came on so suddenly and within two days I lost my speech and the use or my right arm/hand and have a lot of edema in my brain. Thankfully, the Neurologist put me on high doses of Dexamethasone (a steroid) and once that started to take effect, I was very lucky and regained use of my speech and right arm/hand. They also found I had a Pulmonary Embolism and put me on blood thinners that I will now be on forever. I had NO warming or symptoms of Lung Cancer and it was a total shock. Exactly 4 weeks before this, I had routine hip surgery and ALL my pre-op labs and chest xray were fine? One day after surgery I developed a sudden high fever, at first they thought it was the Flu, but I was negative, so they did more chest xrays and said I had post op pneumonia (still no suggestion) or any sign of Lung cancer, despite a total of 5 chest xrays. They found the Lung Tumor, only by CT scan when I was admitted for the Brain tumor. I also never had any symptoms from the Pulmonary Embolism and was quite lucky they found it and treated it effectively. The way you feel now, is HOW we all have felt and for those of us who have gone through a later progression those same fears all creep back in. I still have terrible "Scanxiety" each time I go for a scan, despite now being Stable and Off all treatment for over 4 years. Please know you are NOT alone, and we all care and understand. You've come to a great place for support and LUNGevity also have a lot of wonderful resources on their website. I do hope you'll have all your final test results soon, so you can move forward. For me, knowing exactly what I had and what we were going to do to treat it, gave me a feeling of relief. Once I did move forward and started treament I felt much better. Wishing you the very best.... Lisa
  19. Hi Katy, Welcome to LUNGevity! I'm also a Stage IV NSCLC Survivor and currently doing well at 5 1/2 years in. I was 56 at the time of my diagnosis and despite having once been a smoker, I had quit several years ago and had several clean chest xrays, I really thought I was in the clear, but as my Oncologist told me, there is no way to really know if the smoking was the cause, or if it was from something else, like Radon which I later learned is quite high in my area, especially in the area where my childhood home was. Nonetheless, Lung cancer can strike anyone and we need to continue to educate people on that so that people are aware that all it takes is lungs. I had NO symptoms on warning, until I had a very sudden onset of Neuro changes which I first thought was a severe type of vertigo, it came on out of the blue and that's when my PCP send me for an urgent Head CT and they found a brain met. I was immediatley hospitalized and went through a week of testing and ultimately learned I also had a Lung tumor and Pulmonary embolism, both of which were totally asymptomatic. To this day, I still have no signs or symptoms of Lung Cancer, never had a cough, no breathing issues and no chest pain or discomfort, even when I had the PE, there was nothing. I was VERY lucky that this was found before things progressed even further. LC is a sneaky illness and can affect many without any symptoms, another reason it's often found at a late stage. I also live in Massachusetts and have been to DF for consults and a second opinion, but chose to have my treatment and are closer to home and have done very well. My original Oncologist who I adored, actually now works at the South Shore Branch of DF and I still keep in touch with her. If anything serious ever came up, I would absolutely go see her for a second options and want her involved in any new treatment decisions. She was the one who convinced me to on Immunotherpay, what it was brand new and has just been FDA approved. I was actually the very first patient (Locally) to try Immunotherapy and am so grateful, because there is not doubt, it saved my life. When I was dx'd back in 2015, we did not have the same treatment that you are on today, but I did have Chemo (Carbo and Alimta) and then eventually moved on to (Nivolumab) as my second line treatment and had excellent results, despite some side effects. I did eventually have to stop the Nivo, but by that time my cancer was Stable and has been ever since and that was four years ago this month. If I were starting all over today, I would very likely opt for the same treatment you are on now, and I sincerely HOPE you have excellent results. Fatigue was always one of the most difficult side effects for me, especially while on Immunotherapy,. I still have it today and have had to learn that naps are my friend and that if I feel run down and tired, I must rest, otherwise I feel worse. I do also have Fibromyalgia, which also complicates the fatigue, as it too come with pretty significant fatigue. Nice to meet you and we will all look forward to hearing from you more -- I can tell you that based on my experience and knowing several LC patients who were on Immunotherpay, that the fatigue is quite common. I wish you the very best and hope you will adapt to this side effect. It's very good to know you are now expereinced any others. One thing I would mention is that for some folks Immunotherpay can also cause Hypothyroidism, and typically your thyroid levels will be monitored while in treatment. This too can add to the fatigue and often can be alleviated with meds. Cortisol levels (if low) are another factor, and those were things I was routinely screened for while on Nivo. Please keep in touch and let us know how you are doing. Lisa
  20. Lin wilki

    Tens unit

    I have a couple of fractured ribs so the muscles surrounding them are very tight. My chiropractor used the tens machine always. I go every other week I never heard you can’t use that if i you ou have cancer
  21. Well, I certainly don't like the sound of that, and I especially didn't like reading it in the "impressions" part of the radiologist's report I received Friday summarizing the previous Wednesday's PET scan. Though hardly a surprise given a thoracic surgeon's description of my original PET scan 11 and 1/2 years ago: "You lit that thing up like a Christmas tree." Still, I would have rather read something a bit less ominous. But I don't suppose being diagnosed with two types of cancer (non-small cell lung stage IV and papillary thyroid, stage II) lends itself to a "bit less ominous." Besides, "less ominous" left the building in late February 2009 when I was first diagnosed with a "terminal" disease: non-small cell lung cancer. Not to make light of such a heavy dose of reality but, as Tom Sellick says on his recent television commercial for AAG: "This isn't my first rodeo." And neither is this statement of fact from the radiologist the first less-than-encouraging news I've heard and seen. To invoke Jack Palance (Curly) from "City Slickers" (1991): "I **** bigger than that." I've been living with a version of these words for 11 and 1/2 years. Tell me something I don't know. Nevertheless, I'll find out what it all means soon enough. Though it might be a bit of a re-hash from a few columns ago stating that since all the tumors in my lungs can't be biopsied, practically proceeding, my oncologist will never know for certain exactly how much of what type of cancer I have. And since one medicine - from what I've been told, can't treat both cancers, life expectancy, treatment protocols, etc., are likely unclear at best. Presumably, we'll treat the cancer which is most prevalent, most aggressive and most treatable/curable? I can only hope that as I sit and write this column, two days before my surgical lung biopsy on Monday, seven days, approximately, until I hear from my oncologist, I'll be able to compartmentalize the worst case scenarios - all of which are out of my control anyway, and try to live life as normally as possible and avoid any rabbit holes of gloom and doom. Right now, this is just another blip on the cancer radar that has been "blipping" for more than 11 years. Generally speaking, the medical feedback we receive almost always sounds mediocre (and I don't mean fair to middling either). And it never sounds worse than it did in February '09 when I initially was diagnosed and given a "13 month to two year" prognosis. Unfortunately, having outlived my oncologist's expectation by upwards of 10-plus years doesn't guarantee me any favorable news. That was yesterday (yesteryear, actually). This is today, 2020. However, much has changed/evolved in the cancer-treatment world. There have been more drugs approved for the treatment of lung cancer in the last few years than in previous multiple decades, including the introduction of an entire new class of medicine: immunotherapy. It's not exactly game and match, but it is night and day. Still, it's premature until I'm re-diagnosed and placed in a new protocol and see the results - in future CT scans. This pending biopsy may be the storm before the calm or vice versa, quite frankly. As I await results, my glass remains half full, as always. I just have to hope that while waiting for the cancer business to become clear, I don't get so thirsty/anxious that I empty my glass. That wouldn't help anybody, especially me.
  22. Tbaker

    Tens unit

    Good morning I wondering if any of you have used a tens unit? My husband has been trying to loosen up some really tight muscles. I have in my shoulder. I've heard that I shouldn't use one because of my cancer. I intend on using it but at a lower (setting) range and only for a few minutes
  23. Thanks for sharing. Inspiring and aspirational story. Stage 3b and halfway through 26 projected Durvulamab course. Last scan 3 months ago and another planned but not yet scheduled . 50% shrinkage of Primary lung and nodes not remarkable upon it seems blessed that side effects been minimal though recent weeks mildly intrusive muscle and small joint pains . 12 months since unexpected diagnosis and excited to have beaten the 8 month survival odds to be able to walk my daughter down isle on 22ndAugust. It seemed such a far away goal at diagnosis and yet here we are with a positive future based on all your reported successes kia kaha from New Zealand .Remain strong , positive and eyes on the future possibilities Grahame
  24. Hi Steve, My husband has small cell extensive. Dignosed November 2019. I don't get on here too often, but I try to comment when I do. Just me
  25. Last week
  26. I was just as worried. My husband had 7. Two large golf ball sized ones at his brain stem that they had to remove, or he could have honestly died at anytime. He had WBR for the rest and with the exception of his short term memory, he handled it pretty well. We are at 23 months today. so try to stay positive ♥️
  27. Ron, Simply a great scan result. I'm celebrating with you. Stay the course.
  28. Hi and welcome to our blog. I am 74 and was diagnosed with stage 3 inoperable Adenocarcinoma NCLS. I was devastated for not having mutations but my oncologists and the helpful friends on the board put me at ease because they had success being treated with option 1 that you mentioned. Of course we are all different but one should not loose hope. As for radiotherapy my oncologist explains that the placement of the tumor in the long and/or the size does not give them a clear target to radiate. However if the tumor shrinks after chem treatment that options opens up. You are at a great cancer center so on't loose hope, be positive and hopefully things will workout.
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