Kate7617 Posted December 1, 2019 Share Posted December 1, 2019 Wow! I asked my husband, why does life have to be so hard? He doesn't know. So I ask myself, and it all comes down to the people that are with or not with you in critical moments in life. The journey with cancer has been a complete nightmare unfortunately. I did get a new oncologist at NYU Langone, and she is the difference between night and day. I may not be able to get any help, but I sure will be a lot happier that a "Dr." I had at one time is no longer throwing me in for more durvalumab, while I can not tolerate the side effects. I wish I could, 5 infusion with immunotherapy and it was hell. Not only do I have a lot dealing with the cancer health issues, my family blames me for everything wrong and doesn't do something that will comfort me during this difficult time. Maybe they don't know how. so what about asking? I do the shoe on the other foot test, always been here for anyone in my family for their needs. I shake my head. Thanks for listening and being a support for me at this time, I truly appreciate it and need it so I will carry on. Kate7617 Link to comment Share on other sites More sharing options...
Tom Galli Posted December 1, 2019 Share Posted December 1, 2019 Kate, I shake my head also. Lung cancer is indeed a nightmare with or without a family journey! Stay the course. Tom Link to comment Share on other sites More sharing options...
Blossomsmom Posted December 1, 2019 Share Posted December 1, 2019 Kate, I’m sorry you’re going through all this and feeling blamed. I can’t imagine how awful that must feel. Having cancer is not your fault. It just happens. I admit there are times when I am at a loss as to how to comfort my mom when she’s down but when that happens I just hug her and tell her I love her. Today I’m sending you those hugs and love. I know it’s not the same but know we all care ❤️ Link to comment Share on other sites More sharing options...
BridgetO Posted December 2, 2019 Share Posted December 2, 2019 Kate, Cancer is hard, treatment is hard, and it's so much worse when people aren't supportive. I'm glad to hear you got a new doctor. I wish your family could be a support to you. I hear you and I wish you all the best! You deserve it! Link to comment Share on other sites More sharing options...
DFK Posted December 3, 2019 Share Posted December 3, 2019 Hi Kate, So sorry to read of your frustrations and having a very rough time of it. I wish I had a magic wand to alleviate you just for one day of this nightmare you have been going thru. Unfortunately, magical thinking doesn't make the harsh reality of what you are facing go away, nor make it any easier for you. But IF I had a magic wand, I would wave it over you now and say, "Be gone misery, allow Kate a moment of peace to get her bearings back, to feel uncompromised and nurtured on her journey." I don't think there's a person here that cannot understand and feel your pain. Like others, I offer you support and prayers to get you thru your day, to give you the strength and fortitude to carry on, wherever that may be, so life doesn’t have to be so hard. I am happy that you have another doctor that you are pleased with, that can give you some answers to your questions, to your concerns and fears, to guide you where you need to be for your best interests. Hugs, DFK Link to comment Share on other sites More sharing options...
Kate7617 Posted December 5, 2019 Author Share Posted December 5, 2019 On 12/3/2019 at 12:35 AM, DFK said: Hi Kate, So sorry to read of your frustrations and having a very rough time of it. I wish I had a magic wand to alleviate you just for one day of this nightmare you have been going thru. Unfortunately, magical thinking doesn't make the harsh reality of what you are facing go away, nor make it any easier for you. But IF I had a magic wand, I would wave it over you now and say, "Be gone misery, allow Kate a moment of peace to get her bearings back, to feel uncompromised and nurtured on her journey." I don't think there's a person here that cannot understand and feel your pain. Like others, I offer you support and prayers to get you thru your day, to give you the strength and fortitude to carry on, wherever that may be, so life doesn’t have to be so hard. I am happy that you have another doctor that you are pleased with, that can give you some answers to your questions, to your concerns and fears, to guide you where you need to be for your best interests. Hugs, DFK Yes magical wands were great as a child, reality is now. I am going to do my best, not to expect anything from anyone, this way I won't be disappointed, Hooray! Tomorrow I go for a PET scan, heebeejeebee time. I was told that they don't know if the original tumor after radiation is scar tissue, or some tumor, some cancer, but MSK wasn't doing anything to find the answer to that.Thank God I now have a Dr that is not putting me into the "group Plan" because one size does not fit all. Also New Doc took more blood tests and I have thyroid issues, no wonder I feel and look like the Thanksgiving day blimp at the parade. That also is affecting my breathing, the weight gain. Sometimes after a week I get on the scale and find that I gained 6lbs, WHAT??? I wasn't even on a cruise ship....lol. So hopefully I can get some meds and that will resolve that. Joined a gym that my health benefits pay for to build up my lungs and start breathing better. Pulmonary Doc says I don't need anything, well that what he says. what do I know, I only live in this body. Hoping that everyone is hanging in there, and wishing the best of the Season to all! Kate7617 Link to comment Share on other sites More sharing options...
RonH Posted December 7, 2019 Share Posted December 7, 2019 Hi Kate, It's probably in one of the posts, but are you having your TSH levels checked? I know the Durvalumab wrecked my thyroid during the fist 5 months of treatment when they didn't bother to check it as part of the regular blood tests they were doing. Now 7 months later after discovering that my TSH level was 44 and that I now had Hypothroidism, they are still adjusting my Synthroid dosages upwards. I am still at a TSH level >30 so they just increased my dose up to 150mcg 10 days ago, but I expect to eventually need at least 200mcg. I am sure that this caused part of my weight gain, but then I went and switched over to a Targeted Therapy Alectinib, which one of its adverse effects is none other than weight gain. Just what I needed. Now just looking at food adds the pounds on. Anyway, never doubt that you have an online "family" here, many who are having similar experiences and that you are always welcome to vent here. -Ron Link to comment Share on other sites More sharing options...
Kate7617 Posted December 8, 2019 Author Share Posted December 8, 2019 20 hours ago, RonH said: Hi Kate, It's probably in one of the posts, but are you having your TSH levels checked? I know the Durvalumab wrecked my thyroid during the fist 5 months of treatment when they didn't bother to check it as part of the regular blood tests they were doing. Now 7 months later after discovering that my TSH level was 44 and that I now had Hypothroidism, they are still adjusting my Synthroid dosages upwards. I am still at a TSH level >30 so they just increased my dose up to 150mcg 10 days ago, but I expect to eventually need at least 200mcg. I am sure that this caused part of my weight gain, but then I went and switched over to a Targeted Therapy Alectinib, which one of its adverse effects is none other than weight gain. Just what I needed. Now just looking at food adds the pounds on. Anyway, never doubt that you have an online "family" here, many who are having similar experiences and that you are always welcome to vent here. -Ron HI Ron, thanks for the uplifting message that you guys are my support now, hey let's face the facts unless you have cancer you really don't have the same awareness of so many emotional physical phsycological things going on/ I get it. I can not expect anything from anyone, and I have come to terms with that in my own mind. I have enough to deal with, so why add more. I go on Tues to Dr for my follow up of PET scan, hey I don't like scans, but it will give me the knowledge I am looking for to see what is going on inside my body, and hopefully get treatment if needed and what is the best treatment. I really feel much more hopeful with new Dr, she actually is taking charge and seeing I get the best care possible, What more can I ask for? Yeah now the heart dr wants a catherization? I'm going for a 2nd opinion, I'm not going with a Dr that said nothing is wrong one week and then a catherization the next. Hey remember we are all in God's hands so no worries. Pray, hope and don't worry, just passing through the Earth on a journey and this one is mine. Be grateful, and enjoy every moment! Thanks peeps! Kate7617 Link to comment Share on other sites More sharing options...
Kate7617 Posted December 13, 2019 Author Share Posted December 13, 2019 So went to Doc, there is a trace of cancer shown in the "tumor" after PET scan, good news. Now I have heart problems, abnormal EKG lead to Left bundle branch blockage an enlarge aorta and water around my heart. Plus now after more blood work I need thyroid meds. Yikes! I want to be young again free from all this illness. I am now scheduled for nuclear stress test and another echocardiogram, Doc says not to worry. No durvalumab for me I can't tolerate it, I also have to have surgery for basal cell skin cancer. Prayers needed. Thank you to all for your concern.I wish there was an alternative to durvalumab, and my Doc is checking into it. Possible clinical trial. the Durva kicked my a and that was only 5 treatments that the old Doc was throwing me in for more, hey when you listen to your body you know what you can handle. Will the LBS ever come off, my breathing is bad enough add on the extra LBS and Wowza, it's rough. When ever I see anyone with a cigg, I want to warn them, but hey it didn't do me any good. Good day my friends! Link to comment Share on other sites More sharing options...
DFK Posted December 15, 2019 Share Posted December 15, 2019 On 12/13/2019 at 4:46 AM, Kate7617 said: Prayers needed. Dear Kate7617, Reading your last note I can feel the desperation of your situation. It all sounds so overwhelming. I'll keep you in my prayers as you untangle and prioritize your medical needs. Take good care, DFK Link to comment Share on other sites More sharing options...
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