Living with lung cancer - Introduce yourself & come say hi

seaspray
Thank you for the feedback on your experience, it helps. I did go to the Inspire site and will spend more time there delving into the posts and information. It certainly does have a more complete list of side effects (the site for Infinzi lists about 2 common side effects and makes it sound like a cake walk, perhaps not).
I appreciate your help!! I'll keep researching and sharing with my husband and we'll see what he decides to do.
Hugs to you!

Hi Cindy~ I found Opdivo and Tecentriq to be about the same as far as side effects. I have horrible muscular pain and some joint pain, especially when trying to sleep. Whether that is from being on immunotherapy since 2015, no one knows. I am also 65 and a retired PE teacher and personal trainer so my body has taken a lifetime beating! My skin is very sensitive but that could be from teaching in the sun forever and now living at the beach. I can deal with all of this and that is what counts!! Were you able to go on Inspire.com and find some answers?

Thank you for your kindness alamogal635.....!!
I have joined the caretaker support group on Mayo and since it's been so helpful to me with my breast cancer I know it will also help with my husband's cancer as well. There is a support group I finally found and of course, it's on a night I work (I work four days a week 10-7 at a flexible part time job so I can fit in medical and other duties as needed, but it comes at the price of not being paid when I'm not there and that pesky money thing...you know, ha ha.)
I have friends and family for support but can't afford any other assistance in that area because of my high deductible medical plan. They just now (after 18 months) offered my husband behavioral support and I think he will look into that (he is on Medicare). People like you who take time to reach out and offer support are very important and special to me and I appreciate it!
Hugs

@merpreb Agree. It is so important to acknowledge ALL our feelings about what is happening to us. Feelings are just hat feelings, but kept inside they literally can make us ill. If she doesn't have a close friend in whom she can survive, maybe there is a cancer support group near her, or some sort fo couseling,or mental health professional with whom she could talk.

@cindylb- Morning Cindy. I'm glad that you like this last oncologist. I love mine. I know that it's frustrating and exhausting, I really can't imagine the mixed feeling that you have with this. Can you talk with anyone about this? The more that you realize all of your feelings, except the obvious, I think it will be less tiring. Are you getting any good sleep?

Thank you Karen! This is very helpful. We sent my husbands pathology to Foundation One as well. We just keep coming up 'unknown', ha ha. How did you find the Opdivo? Many side effects for you?

Hi Cindy,
Try going on Inspire.com to the lung cancer survivors. You can type in Infinzi or Durvalumab in the top right hand corner and it will open up all the discussions on that drug. I was on Opdivo for 3 1/2 years and now on another immunotherapy called Tecentriq. Mayo sent my tissue samples to Foundation One. There are people on Inspire with unknown primaries. Hope this helps...let me know if you need help on the forum.
Karen

Thank you!

Hi @merpreb and @cindylb,

I was just reading the posts about your husband's unknown cancer, Cindy. I can only imagine how frustrating that must be to know that it is there but not to know what type it is. In Merry's post, she mentioned immunotherapy. There is a member of Connect,(@shortshot80) Nancy, who has been using immunotherapy for quite a while for lung cancer and it has worked well for her. I'm not sure if she will respond to this discussion as she has been dealing with some other health problems lately. I've known of others who have used it for metastasized breast cancer with good results as well.

Keep us posted, Cindy, on your husband's treatment.

Yes. We got a second opinion a while back and additional tests but they came up with the same situation. They honestly don't know what to do.........We got our second from Colorado University (CU) Medical Center and they sent off his biopsies to Mayo and Cleveland for help, but nope...........no one knows what to do. It's exhausting and frustrating. We're on our 3rd oncologist as well and we like this one.
Thanks for your help.