Mally Posted January 24, 2018 Share Posted January 24, 2018 Im going to start Nivolumab on monday every 2 weeks so has anyone got experience with this immunotherepy drug ? Link to comment Share on other sites More sharing options...
Tom Galli Posted January 24, 2018 Share Posted January 24, 2018 Mally, I'm happy that is settled. The trade name for nivolumab is Opdivo and that may be a more recognizable name for folks in this community. All Hands -- who has Opdivo experience to pass along to Mally? Stay the course. Tom Link to comment Share on other sites More sharing options...
Judy M. Posted January 24, 2018 Share Posted January 24, 2018 Mally Just had my first Opdivo infusion last Friday, so not much experience yet. We'll be doing this together. So far, not bothered by a single side effect. Yay!! Judy M. Link to comment Share on other sites More sharing options...
Mally Posted January 25, 2018 Author Share Posted January 25, 2018 Thanks Tom and Judy and good to hear youve had no side affects Judy and i hope it stays that way ....do you have lymph nodes involved Judy ? And Tom i was wondering if you are considered cured or in remission or stable ? After all these years ... Link to comment Share on other sites More sharing options...
Judy M. Posted January 25, 2018 Share Posted January 25, 2018 Mally No lymph nodes involved. Mets in my hip and adrenal gland. Have already had radiation. Sixteen palliative on hip and 3 S. B. R. T. on adrenal. Now the Opdivo. Hope you have no side effects also. What my Med. On. seems most concerned about is that the Opdivo will cause my thyroid to stop working. They are watching for it. So, you might keep an eye out for that. I am. Have put on 4 lbs. since my infusion, but I think that may be the big batch of brownies I baked. Lol. Last thing my doc said to me about the Opdivo was, "You're gonna love this." So far, he's right. Judy M. Link to comment Share on other sites More sharing options...
Tom Galli Posted January 25, 2018 Share Posted January 25, 2018 Mally, Am I cured or in remission after all these years? In August of last year (2017), I saw my oncologist to discuss my CT scan. I still have 2 oncology appointments every year (next in February) and will likely continue the rest of my life. I've survived now just about 14 years after diagnosis and have been living with no evidence of disease (NED) for 11 years. Despite that tenure, my oncologist will not use the word cure when associated with lung cancer. While I may be disease free, it is probable my lung cancer may reoccur. How probable? Only the Lord knows and He's not told me. But my oncologist insists that 2 consultations a year are essential to catch an early recurrence. He would not have that view if he didn't have recurrence data to support it. Moreover, US medical insurance would not pay for these consultations if they didn't have data to support recurrence either. Lung cancer is very persistent. Remission is an interesting word, and in modern contextual use, not a word a lung cancer survivor would want to hear. Remission means simply the cancer has stopped metastasizing or spreading. Treatment could be the reason or cancer progression may stop without treatment. I know of survivors who entered hospice care. When in hospice (in the US), cancer treatment stops but symptoms are treated to relieve pain and discomfort. Hospice care is supposed to be no longer than 6 months, but I know of several who were discharged because their cancer went into remission. When remission happens, doctors do not have a medical explanation for why the disease stopped spreading. As lung cancer survivors, we strive for NED and I do hope your Opdivo treatment yields a no evidence of disease result. Most importantly, enjoy your vacation! Stay the course. Tom Link to comment Share on other sites More sharing options...
Mally Posted January 27, 2018 Author Share Posted January 27, 2018 Tom did you have more than 1 round of radiotherepy during your treatment years ? Or just chemotherepy ? I dont know why i cant get some radiotherepy along with the opnivo treatment because others have said they have had it on 3 or more spots at the same time and ive got 3 nodes that lit up on pet scan ...my oncologist doesnt say much and hes indian so i feel like i have to read between the lines and i wont see him again until march when ive had 3 infusions of opnivo Link to comment Share on other sites More sharing options...
Tom Galli Posted January 27, 2018 Share Posted January 27, 2018 Mally, Sorry brief answer. Down hard with the flu. I had one conventional radiation therapy as my first line treatment. Once a day for 30 days. I had weekly infusions of Taxol and Carboplatin during this radiation. As my 4th line treatment, I had CyberKnife radiation. If your question is why can’t you have conventional radiation with Opdivo, it is a good one. Stay the course. Tom Link to comment Share on other sites More sharing options...
Judy M. Posted January 27, 2018 Share Posted January 27, 2018 Mally I had S. B. R. T. to my 3 lung nodules originally, but Med. On. and I had to fight for it. And it IS difficult to do that type of radiation to 3 separate areas. Was difficult for the Rad. On. to develop the plan and difficult in the set up and treatments also. I had to lay perfectly still for about 2 hours during set up and about 1 1/2 hours during treatments. Not as long with the S. B. R. T. on adrenal, but both arms still hurt and were numb after each treatment. You hold them over your head grasping 2 short rods each time. Also, there's an issue with how close the S. B. R. T. Will be to various other organs and parts of your body that could be damaged by it. Rad. On. wasn't sure he could do my adrenal but agreed to do the original set up and take a look. And he did warn me I might end up with a stomach ulcer because he couldn't being the radiation down as low as he wanted it on about 2 cm. of my stomach. I thought, Possible ulcer? Cancer? I'll risk the ulcer." You need to consult a Radiation Oncologist who does a lot of S. B. R. T. I've learned through this that even though my docs meet together regularly ( fortunate for me) they don't really know a lot about one another's specialties. Case in point recently. I have asthma and so there was some concern about the Opdivo causing the asthma to act up which it hasn't so far. Pulmonologist left standing order for steroids for me if this happened. While I was talking to Med. On. learned the one thing he wanted me to avoid if at all possible was steroids because they will work against the Opdivo. Wouldn't have known that and obviously Pulmonologist didn't. Hope some of this is helpful. Judy M. Link to comment Share on other sites More sharing options...
Judy M. Posted January 27, 2018 Share Posted January 27, 2018 Mally Just thought of something else. The Radiology Oncologist who did my S. B. R. T. on my adrenal told me my Med. Oncologist wasn't sure he wanted me to have the S. B. R. T. on my adrenal because he wanted to watch that tumor to see if the Opdivo was working. This could have been a problem because my Med. Oncologist is head of the cancer program at my hospital. I was appalled. I replied that if the Opdivo didn't work he'd know it because the cancer would come back. I was told that wasn't necessarily true. Well, if it doesn't I'll be thrilled and I don't care what worked. I certainly didn't want to keep a tumor just so a doctor would have something to watch and I got the S. B. R. T. Like Tom I don't know why you couldn't have at least standard radiation with Opdivo. I had both. That's a question for a good Radiation Oncologist. Judy M. Link to comment Share on other sites More sharing options...
Mally Posted February 4, 2018 Author Share Posted February 4, 2018 Thankyou both again for your input and was wondering if in the beginning of your journey were you told it was curative ? Link to comment Share on other sites More sharing options...
Mally Posted February 11, 2018 Author Share Posted February 11, 2018 Opdivo number 2 tomorrow and no side effects as yet so hope its working ...How are you going with yours Judy ? Tom if you see this im just wondering if you ever had lymphnode involvement during your treatments ? Is it right that the cancer cells have to go through the lymph system to other areas to grow ? Link to comment Share on other sites More sharing options...
Tom Galli Posted February 11, 2018 Share Posted February 11, 2018 Mally, During my surgical biopsy, my surgeon removed perhaps a dozen lymph nodes. The incision was at the base of my neck and that gave ready access to the nodes. Each was sent for a real time examination by a pathologist and each was found to have no cancer. I was told the reason my surgeon removed so many nodes was the size and location of my tumor. Large tumors in a main stem bronchus generally spread disease to close lymph nodes. Thankfully, for some reason, mine did not. As for the ability of cancer to spread through the lymphatic system, this system is part of the body's circulatory system. So it is connected to almost everything in the body and yes cancer cells can spread throughout the body using lymphatic system. Stay the course. Tom Link to comment Share on other sites More sharing options...
Judy M. Posted February 11, 2018 Share Posted February 11, 2018 Mally Yes. During my first line treatment my Med. Oncologist said he expected me to be cured. But since that failed he has been Mr. Pessimistic and tells me all the time that it will come back and only talks about giving me a little more time. Which is a drag. But my point of view is that he's a doctor not a prophet. Jesus can heal me at any point and no matter my condition. He's Sovereign. But He hasn't told me whether or not that's His plan. So, my part is to do what I can and trust Him. Still doing great with the Opdivo since my second infusion. No noticeable side effects. Like you, just hope it's working. Do you happen to know your dose? I've read that 240 mg is the standard but learned last infusion I'm only getting 197 mg. based on my weight. Judy M. Link to comment Share on other sites More sharing options...
Mally Posted February 12, 2018 Author Share Posted February 12, 2018 Judy im not sure what dose im getting but will ask today and i did hear that it depends on your weight and im on the bigger side of things so probably a big dose ...will let you know . Link to comment Share on other sites More sharing options...
Mally Posted February 12, 2018 Author Share Posted February 12, 2018 Our lymphatic system is supposed to catch and destroy infections and cancer cells i always thought and i read an article where a dr thinks the nodes should be left alone with cancer in them because they are doing their job by holding the cancer cells until the immune system deals with them .....anyway i think the biopsies need to be followed quickly with treatments because once they pick at a nodule it opens it up and in my mind lets the cells run away and i was curable on october 13th 2016 and november was biopsy and pet scans then the surgery in jan 2017 and thats when 7/20 lymph nodes tested positive and then had to have adjuvant chemo and clean scan in june on completion of chemo ...roll on 6 months and lymphnode enlargement noted then biopsy and pet scans confirmed the cancer ... Link to comment Share on other sites More sharing options...
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