BridgetO Posted December 6, 2017 Share Posted December 6, 2017 Boy, that is scary,getting a report with apparently mixed results and no explanation! It's good the doctor is optimistic. Best wishes to your dad for his future treatment, and to you. Hang in there! Bridget O Link to comment Share on other sites More sharing options...
Steff Posted December 6, 2017 Share Posted December 6, 2017 Tim, I am slowly (slower than a sloth) learning to deal with my mom's cancer recurrence as a chronic disease, no option of a "cure" but options to allow her continued life. She's been on immunotherapy and chemo - has received 7 sessions. Her recent CT showed a "thickening" near her cancer site. It can be many things besides cancer progression, but I, of course, go to the worse case scenario! I am happy to hear that when you spoke to the doc, he said he was optimistic and that there are treatment options for the progression. I try to keep reminding myself that even if there is progression, if the doc says there is a treatment option, we still have a chance at winning this battle. It's wonderful that all other areas are stable! Here's hoping to reasonably good news next week when you get to speak with the doc more in depth. Take care, Steff Link to comment Share on other sites More sharing options...
VirginiaTim Posted December 7, 2017 Author Share Posted December 7, 2017 7 hours ago, BridgetO said: Boy, that is scary,getting a report with apparently mixed results and no explanation! It's good the doctor is optimistic. Best wishes to your dad for his future treatment, and to you. Hang in there! Bridget O 6 hours ago, Steff said: Tim, I am slowly (slower than a sloth) learning to deal with my mom's cancer recurrence as a chronic disease, no option of a "cure" but options to allow her continued life. She's been on immunotherapy and chemo - has received 7 sessions. Her recent CT showed a "thickening" near her cancer site. It can be many things besides cancer progression, but I, of course, go to the worse case scenario! I am happy to hear that when you spoke to the doc, he said he was optimistic and that there are treatment options for the progression. I try to keep reminding myself that even if there is progression, if the doc says there is a treatment option, we still have a chance at winning this battle. It's wonderful that all other areas are stable! Here's hoping to reasonably good news next week when you get to speak with the doc more in depth. Take care, Steff Thank you both! It's the not knowing that gets to me. I guess just put it out of mind until next week. I really hope he gets a shot at immunotherapy. I've heard so many great things about it, Thanks again for your time and response! Link to comment Share on other sites More sharing options...
VirginiaTim Posted December 15, 2017 Author Share Posted December 15, 2017 Just a quick update. He is having a thoracentesis done next week to determine if the new fluid is benign or malignant, along with a PET scan to see if there is any uptake in the lymph nodes. Apparently a few of the lymph nodes on the same side (RLL) have gotten larger and they cannot biopsy those because they are to far in so the PET will let us know on those. Also, the doctor started the appointment walking in by saying "we have some issues. Your disease is back". Didn't seem like a very tactful way to present the issue but it is what it is I guess. He mentioned Opdivo as a treatment option pending all the results but then went on to say that this could all be benign. Not really sure what to think at this point and didn't really have our questions answered entirely. On a positive note, he gained 8 pounds in a month and his oncologist said that his appearance was surely not a good representation of the scans (because he looks great right now)! Maybe this is just a benign pleural effusion (he had a thoracentesis done 4 months ago and the fluid was non-cancerous) and the nodes are not showing much uptake. The fight goes on but he seemed to be adversely affected by the news given to him yesterday. Thank you all and I wish you all continued success in your fights! Link to comment Share on other sites More sharing options...
Tom Galli Posted December 15, 2017 Share Posted December 15, 2017 Tim, I believe his doctor is as frustrated as the both of you. Most I know battle with their patients and are disappointed when clear results are not achieved. Thus, perhaps rationale for the frank admission. Effusion biopsy will or should bring some certainty to an otherwise baffling set of almost indicators. I don't doubt his disaffection. I've been there and it is indeed crushing. Still and all, there is but one thing to do. Stay the course. Tom Link to comment Share on other sites More sharing options...
VirginiaTim Posted December 18, 2017 Author Share Posted December 18, 2017 On 12/14/2017 at 9:09 PM, Tom Galli said: Tim, I believe his doctor is as frustrated as the both of you. Most I know battle with their patients and are disappointed when clear results are not achieved. Thus, perhaps rationale for the frank admission. Effusion biopsy will or should bring some certainty to an otherwise baffling set of almost indicators. I don't doubt his disaffection. I've been there and it is indeed crushing. Still and all, there is but one thing to do. Stay the course. Tom Thanks Tom. Your words are truly appreciated. Today, he was to have a biopsy on his kidney mass completed per his oncologist instructions. We spent Friday waiting at the hospital for an hour awaiting an order for blood work to ensure he was able to complete the procedure today. He fasted last night and this morning and off to the hospital we went. He was called back, changed into a gown, and had an IV started. Then they decided not to go forward with the biopsy based on the CT scan results from last week. This was a truly unpleasant experience for him. The anxiety and build up to a surgical procedure only to be told to go home. The best part was I got him laughing a lot and he did A LOT of walking around, which is great. I think we are going to seek out a second opinion. It looks like Opdivo is up next. Link to comment Share on other sites More sharing options...
Aljames Posted January 4, 2018 Share Posted January 4, 2018 Hi Virginia Tim I just searched for a forum on lung cancer, found this one, and read your story. How is your dad? My husband was diagnosed with lung cancer Sept 21 so I feel like following your dad's story will give me an idea of what's coming. Link to comment Share on other sites More sharing options...
VirginiaTim Posted January 18, 2018 Author Share Posted January 18, 2018 On 1/3/2018 at 10:08 PM, Aljames said: Hi Virginia Tim I just searched for a forum on lung cancer, found this one, and read your story. How is your dad? My husband was diagnosed with lung cancer Sept 21 so I feel like following your dad's story will give me an idea of what's coming. He's doing pretty well considering. As you can see, his cancer is starting to get a little larger so the doctor mentioned Opdivo in the near future. His latest CT/PET showed the original mass has gotten larger and there is a little bit more spread but everything remains in the right lower lobe and a few nodes. Sadly, we have been trying to get him back to his oncologist for 3 weeks and cannot get a call back. Although, they post all his results online. The medical center (the only available within 100 miles) has really let us down in terms of their professionalism and personal care. I wish you and your husband all the best! I will tell you this, I assumed the worst when he was diagnosed after reading prognosis's online. Don't buy into any of it! Each person is different and he CAN and WILL beat this! Link to comment Share on other sites More sharing options...
VirginiaTim Posted February 1, 2018 Author Share Posted February 1, 2018 Fresh out of the oncologist today. Doc saids the primary tumor has grown a little and a few of the nodes have got a little larger and the pleural effusion biopsy came back with NO malignant cells. Doesn't seem like the worst news but certainly not the best. First session of Opdivo coming up this Wed, 02/07. Seems odd to me because they never actually gave him a PD-L1 test? On a brighter note, his weight is all the way up to 132. He was 174 at diagnosis and down to 118 post chemo/radiaion. His main concern from Opdivo is weight and appetite loss but I think he will be okay. Hoping this works! Link to comment Share on other sites More sharing options...
BridgetO Posted February 1, 2018 Share Posted February 1, 2018 I will hope along with you that the Opdivo works! Link to comment Share on other sites More sharing options...
Tom Galli Posted February 1, 2018 Share Posted February 1, 2018 I'm looking forward to his grand good news! When my appetite waned during chemo, my wife, a dietitian, made chocolate mint ice cream with crushed Oreo cookies. Turns out there is something to mint countering chemo effected taste buds. Go go Opdivo! Stay the course. Tom Link to comment Share on other sites More sharing options...
LaurenH Posted February 2, 2018 Share Posted February 2, 2018 I'm glad to hear that there are no malignant cells in his biopsy! Opdivo and Tom's mint Oreo ice cream sound like a great plan. Please keep us posted! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
VirginiaTim Posted February 3, 2018 Author Share Posted February 3, 2018 I wont stop fighting for him as long as he is breathing! I intend to express any and all avenues to aid him in overcoming this nasty disease. Link to comment Share on other sites More sharing options...
VirginiaTim Posted February 8, 2018 Author Share Posted February 8, 2018 Opdivo successful administered today! 5 more treatments (every 2 weeks) and then we re-scan. We had a thoracentesis done yesterday and 1500 mg of fluid was removed. Oddly enough, he said he felt worse after than he did before in terms of shortness of breath. Anyone or a caregiver experience something similar? Link to comment Share on other sites More sharing options...
LaurenH Posted February 16, 2018 Share Posted February 16, 2018 I'm glad to hear the first round of Opdivo is complete! We'll be thinking of you and your dad and hoping for good scan results. I'll reach out to our members to see if anyone has experience with a thoracentesis. We are here for you, Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
Tom Galli Posted February 17, 2018 Share Posted February 17, 2018 Sorry I missed you post telling us about the thoracentesis. Unfortunately, I've had three of these uncomfortable procedures. And, after one I did indeed experience shortness of breath. I was sent home with oxygen and by morning the shortness of breath stopped. I hope everything post thoracentesis is resolved now. Stay the course. Tom Link to comment Share on other sites More sharing options...
VirginiaTim Posted May 21, 2018 Author Share Posted May 21, 2018 Well here I am again! 8 treatments of Opdivo complete, he's gained weight back (up to 141/was at 119), saids he feels better, and IMO, his physical appearance is great. But the scan came back not so good. . I don't get it. It just doesn't coincide with his symptoms/appearance. Perhaps it's pseudo progression? No word from the doc yet on where we go from here. .. Link to comment Share on other sites More sharing options...
Tom Galli Posted May 21, 2018 Share Posted May 21, 2018 I'm confused! Could it be a mistake? Could the radiologist have looked at a different patient's scan? Stay the course. Tom Link to comment Share on other sites More sharing options...
VirginiaTim Posted May 22, 2018 Author Share Posted May 22, 2018 6 hours ago, Tom Galli said: I'm confused! Could it be a mistake? Could the radiologist have looked at a different patient's scan? Stay the course. Tom Highly unlikely. His voice has been limited which explains the right vocal cord and of course the effusion, since we have have 6 THORA's now. . . Link to comment Share on other sites More sharing options...
VirginiaTim Posted May 22, 2018 Author Share Posted May 22, 2018 Spoke to the oncologist. He also favors a pseudo progression result in the scan based on my Father's physical appearance and being. Link to comment Share on other sites More sharing options...
VirginiaTim Posted October 7, 2018 Author Share Posted October 7, 2018 Well everyone, I wish I had positive news to report. Unfortunately, after a vigorous 22 month battle, my father is being moved into hospice. For a 69 year old man with late stage emphysema and stage 3A lung cancer, he put up one of the greatest battles I have ever witnessed. As a caregiver and his best friend, I am going through a ton of emotions right now. . .guilt, sadness, happiness, concerns, etc. . I wish all of you afflicted by this disease and your caretakers the best and you will all ALWAYS be in my prayers. Fight on! Link to comment Share on other sites More sharing options...
Susan Cornett Posted October 7, 2018 Share Posted October 7, 2018 I'm so sorry to hear this. This disease is horrible and takes such a toll on everyone. Please know that you and your dad are in my prayers. I pray that hospice gives him peace and comfort. Link to comment Share on other sites More sharing options...
BridgetO Posted October 7, 2018 Share Posted October 7, 2018 I'm so sorry. I hope you will have peace and comfort, too. Link to comment Share on other sites More sharing options...
VirginiaTim Posted October 7, 2018 Author Share Posted October 7, 2018 Thank you all. I have learned so much over the past two years from all of you. I wish and hope we all can find a cure this disease soon. Link to comment Share on other sites More sharing options...
LexieCat Posted October 7, 2018 Share Posted October 7, 2018 I'm so sorry, Tim. For what it's worth, the people I know who have used hospice found it to be a godsend. You sound like a great son, and I've no doubt you have made your dad's last couple of years easier. Link to comment Share on other sites More sharing options...
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