Lbelle78
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Posts posted by Lbelle78
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Thanks so much Julie, that's a great help!! I actually got a call back yesterday from the Dr. and he said that I've been approved for Keytruda rather than Opdivo, so we will meet with him tomorrow and start up next week. I'm nervous about it because before this diagnosis I rarely put anything but natural products into my body, and so the uncertainty of it all is crazy. But. it is a necessary evil and I am ready to get it done.
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Hi guys, can any of you who have been on Opdivo infusions short term share your early symptoms? I'm supposed to start the first full week in June and am nervous about this! My doctor has of course shared all of the potential issues I might face such as thyroid issues, colitis, pneumonitis, but I would like to hear from actual patients. Thanks so much!!
- Julie in SoCal and JohnIP123
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Hi Lauren, I flew to out to Mexico City for a cryoablation/immunotherapy treatment that has not yet been approved in the US. However, my Dr. is from the states, where we initially met him. We have had an amazing experience and I am currently going through a strong immune response that involves fever and flu like symptoms as the body's immune system attacks the cancer, no fun to be sure, but exactly what the doctors want to happen.I know treatments like this are not the norm, but they do involve FDA approved immunotherapies, just used in a combination that is not yet approved in the states. Brief Opdivo infusions upon return are the next step followed by several scans to measure progress. I hope to share more upon completion of this protocol that is useful for Stage 4 patients especially. God bless.
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Thanks for the awesome advice, all great suggestions and we are definitely going to seek another opinion. Appreciate all the support.
- corinnecasebeer, Suepm, Meloni and 1 other
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Linnea, that's so encouraging, thank you. I will definitely be checking you out. I'll read more about your journey.
- corinnecasebeer, Suepm and Tom Galli
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After going in Friday for a robotic upper right Lobectomy, I woke up to learn that the surgery could not be completed because the surgeon saw spots in the lower lining of my lung. He completed a small wedge resection for biopsy and closed me up. My family and I have been heartbroken to put it mildly. This jumps me from a "curative" stage 1 to stage 4 at age 38. I do have the ALK mutation, but the oncologist today was not very hopeful. We have cried all day long, and my poor husband sobbed for an hour driving back.This is so unbelievable after being so excited for a good outcome. I so want to be here for my children and family.
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I goofed on the surgery date, it is April 21st. It would be glad to have that done, lol. I'm going for an EBUS to biopsy the lymph nodes in the Mediastinum tomorrow morning. The surgeon would not proceed without it, and it would delay surgery if node involvement found during the EBUS is an issue. We are praying for a clear report.
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Hi Suepm, thanks for checking on me. I'm going Monday to the 2nd surgeon for his opinion on getting minimally invasive surgery. We are going in prepared to set a date either way as soon as he is able. Crazily enough our first surgeons office called yesterday and said they wanted to speak with me about robotic surgery performed by another surgeon in their group, when we were not initially told that was an option. That confirmed for me my choice to speak with the 2nd surgeon. Scared to get the ball rolling!!
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Thank you Meloni, good advice and for sharing your experience. Just the thought of surgery in general horrifies me. I want to be here for my family, and I worry about everything from making it through to potential complications afterwards. All of this is like a terrible dream. Praying and trying to trust Gods plan.
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Thank you Suepm for that. It is good to know. My pulmonologist's nurse called today and wanted to know if I'd scheduled the surgery yet, so I told her about my situation. She said that the doctor I spoke to has notoriously bad bedside manner, though he is a good surgeon, but that is the group of surgeons they generally recommend to everyone. She recommended another surgeon in the group we also contacted and said she would help me with getting information to our 2nd opinion choice too if needed. Crazy times.
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Good advice BridgetO, and thank you for it. They are so so emotional and scared, but thankfully although not happy about it, I believe are going to support my decision to wait for this appt. Yes, the surgeon told my husband and father that we do not need to be in emergency mode, to step back and research. My husband is the pastor, lol, so he feels out of his element with it being us now instead of others. Our church family has been awesome, bringing meals and such while I've been regaining strength after my pneumonia and bronch. I've been so scared that surgery is the end rather than a beginning because of the unknown, but you are so right about how we view and talk to others and ourselves. Thanks so much for the support!!
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Morning guys, I feel like I have been asking so many questions and I appreciate the support of everyone. I am going to need a Lobectomy soon, as I have shared. After a meeting with a surgeon Friday, I am seeking out a 2nd opinion for potential VATS or robotic, which this surgeon does not do. I was able to get an appt. for April 10th with a surgeon at UAB where I live in Alabama to discuss this. He only consults in the office Mondays and performs surgeris and classes the other days. Our first surgeon said we had a little time to research this and make the best choice, but my family is going nuts wanting me to schedule an open surgery right away rather than go to the 2nd opinion out of fear of waiting, which I understand. I do not want to drag this out, just feel comfortable with my choice, especially after reading everyone's experiences. Does this seem like an unreasonable amount of time in other's experiences?
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Tom, you are an inspiration. I am encouraged by your story and so appreciative that I was led to this forum. I want to make it through this and then help others. Had I not gotten sick when I did, I would have never known about this tumor, so I'm trying to remember that and count it as God's blessing.
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Thanks to all of you who have given me advice on this terrible journey. Despite my pulmonologist's optimistic outlook on how " lung cancer in someone your age is as rare as hen's teeth," I was diagnosed yesterday following my bronchoscopy with what looks to be adenocarcinoma, hopefully stage 1, upper right lobe, no lymph nodes lit up on PET or appear to be involved at this point, but surgery will tell. My uterus lit up also, but they think this was due to doing the scan during menses, and CT with contrast showed no indications of tumors. I will have to follow up with my obgyn. I have an appt. tomorrow with the surgeon and they stated that turnaround for the surgery would be very quick, within the week. I am hoping that I am a candidate for VATS and/or robotic surgery. This is terrifying for me, as I have never had any type of surgery before. I've looked at some of your experiences since yesterday. Waking up after surgery would be fabulous! Waking up on a vent scares me to pieces. Good experiences you can share??
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Thank you to everyone, you have all been so kind and helpful. Was able to get a followup appt.for in the morning, and our local nurse practitioner called my husband this morning to check on me and found out about our situation. She used to work for a pulmonologist at a large medical center nearby and is getting me an appt. for next week!
- Melissa Blevins, Mally and Meloni
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Does bloodwork and oxygen levels give any indications in an illness of this type?
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Hello everyone. I never thought I would need to seek this type of forum out, but am glad it is here. I am a 38 year old nonsmoker, mother of 2 young children. I recently had a bad bout with the flu and could not regain my strength. I was taken to the ER with severe fatigue, no cough, back pain and low grade fever. They did a chest x ray and diagnosed as pneumonia, however the doctor said it was an atypical presentation in the upper right lobe of my lung. I stayed a few days in the hospital and they did a follow up chest x ray to monitor my progress. I was concerned when the doctor then ordered a CT scan. They came in later and stated that this was a very unusual, concerning result and looked to possibly be a large nodule or mass and the density and location could indicate cancer. They were hoping to get me in Monday to see a pulmonologist, but now I have to wait several weeks to get in unless there is a cancellation. I was just released from the hospital today, so I am still very weak. I am more than terrified at this point. The doctor stated that a bronchoscopy would probably be necessary. I have never had a major health issue, so I'm not dealing well with this. Help!!
Multiple Nodules Worry
in GENERAL
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Dear Jen, I share the thoughts of others and encourage you not to wait 6 months for a rescan. I am a 39 year old mother of 2, and when my initial appt. with the pulmonologist was delayed members here gave me the wonderful advice to seek another opinion. I'm so glad that I did, as the next pulmonologist we spoke to immediately scheduled a bronchoscopy and biopsied the primary mass. Because of my age, being a nonsmoker, and being in relatively good health to that point, no one suspected I was walking around with late stage lung cancer. I pray that is not what you are dealing with, but for your own peace of mind, a 2nd opinion would be key. God bless, and prayers for you to be led in the right direction.