Introduction

[Jessi08]

My name is Jessica. My father was diagnosed about 7 months ago with Stage 4 adenocarcinoma. Had difficulty tolerating his chemotherapy. Just had first infusion of immunotherapy. Anxious to see how things will go.

[Jayvicky]

It hard but he can do it just keep faith

[gdeanbates]

Hi Jessica, Sorry to hear about your father. I received the same diagnosis in October 2014. Although I was on chemotherapy from November 2014 through August 2015 and tolerated it OK. It was not easy and I was always tired and felt run down, especially if my blood counts went too low. I did have to get a blood transfusion of 2 units during this time. In September 2015, I started on immunotherapy, receiving Opdivo every 2 weeks. The difference between chemo and immunotherapy is like night and day. I am now better able to feel like I can lead a more normal life than I had been leading. It did take a few weeks to get over some of the residual impact from the chemo, though. I have had about 3 CT scans so far and my oncologist says that I am making slow, but steady progress and that was what we wanted to see.

I hope your father's immunotherapy treatments work out for him. I still have no idea when my treatments will end, but I feel that I have hope and am no longer as scared as I was when I was first diagnosed. I know very little about cancer and having lost several family members to this disease, I thought I had been handed a death sentence. I no longer feel this way and feel like I am going to be around for awhile longer.

[Jessi08 Volunteer in reply to gdeanbates]

That is amazing thank you for this I will share with my father!

[scottcharlop in reply to Jessi08]

Thank you so much , so far you are right, the immunotherapy is much easier to tolerate. I had one treatment so far of the Opdivo. I am still very tired and have shortness of breath. I am not throwing up so that is a big plus. My appetite runs from none to I have to force myself to eat.

[gdeanbates in reply to scottcharlop]

Hopefully, the tiredness and shortness of breath will soon pass. I am sure I was still feeling some of the side effects from the chemo for a few weeks after ending chemo and going on Opdivo. I sleep much better now than I did while on chemo. I don't know which was worse; the chemo drugs or the supporting non-chemo drugs that they gave me so I could better handle the chemo. I was fortunate and never threw up. My appetite also picked back up after going on Opdivo. I had appetite issues while on chemo and would either not eat or eat very little. I ended up losing about 20 pounds while on chemo (not a bad thing since it was weight that I needed to shed anyway). I hope the Opdivo works out well for you and that all the issues you are currently going through are soon over.

Gary

[scottcharlop in reply to gdeanbates]

Thanks Gary the best to you as well.

[gdeanbates in reply to scottcharlop]

I just went for Opdivo, yesterday and I believe it was my 20th treatment or cycle as the oncologists refer to it. One of my initial concerns following CT scans to check the progress of my treatments, I was concerned that there was little or no shrinkage in some of the lesions. I read on an immunotherapy Facebook site that seems pretty good that your body sort of inserts good cells into the cancerous cells and that sort of explained to me why there was very little change in size. I confirmed that this is true with my oncologist, yesterday. I wish I understood all of this better than I do, but it just seems to be way too scientific and over my head

[gdeanbates in reply to gdeanbates]

Do you have a chemo port? I have found that it has been much easier on me than having them start an IV for each infusion. I got mine following the 4th Cisplatin infusion. It was just getting way too painful when they would stick me looking for a suitable vein. I still see so many of the other patients coming in for treatments that do not have one.

[Jessi08 Volunteer in reply to gdeanbates]

Thanks for sharing all of this Glen. I did tell my father that I heard similar information regarding the sizes of the tumors. That you most likely wouldn't see any significant changes on the PET scan especially in the first couple months. But that the immunotherapy works differently than chemo.

He does have a port 😊

Thanks again for sharing your story! Keeping you in my thought.

[FtB_Peggy]

Welcome Jessica,

So glad you are here! So many folks here understand your story, and want to support you and your loved ones as you walk through this challenging and yet hope-filled time in your lives. Please keep in touch.

[MFH_Advocate]

Thanks for posting Jessica! Sending positive thoughts to you and your father.

--Mary

[Jessi08 Volunteer in reply to MFH_Advocate]

Thanks for the support Mary!

[Jessi08 Volunteer in reply to MFH_Advocate]

Hi Mary! Curious to know what your thoughts are on the recent article from the NY Times reporting Opdivo failed clinical trials to expand use 😔

nytimes.com/2016/08/06/busi...

[MFH_Advocate in reply to Jessi08]

Hi, Great question! I think the article and the quotes from oncologists are very useful. The full results (data) are not yet available, so we need to know more about the study! Keep in mind that Opdivo has been proven to be effective in many tumor types, including lung cancer, and underwent rigorous testing before being approved by the FDA. We know that not all lung cancers are the same and some patients respond better to certain treatments. Certain immunotherapies, such as Opdivo and Keytruda, work by blocking a protein called PD-1. Studies suggest that patients whose tumors express high levels of PD-L1 might respond better to immunotherapy. Studies of Keytruda, for example, looked at patients with tumors with PD-L1 expression of at least 50%. The recent study of Opdivo looked at previously untreated patients with tumors with PD-L1 expression of at least 5% vs chemo. What does this mean? Well, we need to see if Opdivo works better than chemo in previously untreated patients with PD-L1 expression of 50% or more. The NCCN guidelines point out that in an earlier study, Opdivo had a longer duration of response and fewer side effects than chemo in previously treated patients who did not have PD-L1 expression. From a scientific viewpoint, it is hoped that this study will provide valuable information that helps doctors decide which patients might get the most benefit from immunotherapy.

[Jessi08 Volunteer in reply to MFH_Advocate]

scottcharlop

Thanks Mary! It's so hard to know what's right and what's wrong especially since when our judgements can be so clouded by media 😔 And the fact that we put faith in the doctors to make the best decisions on behalf of our family members yet they are so unsure as to what the best methods of treatment are themselves 😕 Just have to keep plugging and hope for the best 💕