Hi Brogsie, I have not been on this site for over a year and saw your post and wanted to reply.  I was on Yervoy and Opdivo for a 8 months.  After 3 months my tumors were gone and the plan was to stay on Yervoy and Opdivia for at least another year.  5 months later, I started to lose my vision in left eye so treatment was stopped.  I still can't see but have an eye specialist who is trying to restore my eyesight.  I have had 4 scans and each showed  no evidence of tumors so went 18 months without treatment with good results.  Several months ago my cancer came back unfortunately.  I have had and have now again lung cancer.  My doctor is deciding on what treatment to put me on this time.    Wishing you well, CiennaR ... View more

Hi Lolie, I read one of your posts regarding finding friends and wanted to say I belonged to the cancer forum that closed down suddenly.  I still miss it!  It was a great cancer forum with a bunch of great people. I am sorry your cancer reappeared in your lung.  I know how you feel.  I was in remission for 18 months and just found out recently that the cancer is back in my lung.  This is hard to accept. I would be interested to know more about you and how you are doing.       ... View more

Hi NotaBergen Just wanted to say glad your treatment went well with good results.  Also, nice you had some time off from treatment and was able to enjoy it.   Here's to a successful new phase of your treatment. Cienna R   ... View more

NotaBergen, Just wanted to let you know I am doing o.k.  and hope you are doing good on your therapy.   My eye problem has tended to be more then at first thought.  I am now going to an eye clinic through the university hospital where my cancer center is.  There is still very little knowledge of immunology side effects, how to treat or prevent them so my vision problem is being slow to resolve but have been told this eye clinic is one of the best so am hoping things will turn around and my vision will come back to normal or close to normal.  I take a 3 month PET scan next week.  If it wasn't for the eye thing, I would feel really good.  CiennaR ... View more

Hi AprilMay, It is very natural to be scared upon hearing that you have cancer.   I have lived with cancer for almost 3 years and there have been plenty of times I have been scared not only of the cancer but of tests. procedures, awaiting test results.  When you are first diagnosed with cancer, it is all so new so ask plenty of questions to your medical team as this will help make treatment, etc. less scary. I found that even though treatments can be uncomfortable,  I got some peace in knowing I was fighting the cancer, hence doing something positive.  There will be times when you will be down, that is natural, just try to rest.  If it helps to talk, talk.  If you need silence, that is good too. Best wishes to you, CiennaR     ... View more

Hi Nota, Just wanted to say it is very interesting reading your experiences while on immunology drugs.  I'm sure this will be of interest to those who are considering these cancer drugs or to those already on them.  The side effects can range from mild to severe.  I have been off Opdivo and Yervoy since May and still have severe eye issues.   I had written a thread about the same time you started yours about how I was starting to have eye problems but for what ever the reason I Can't find my original thread.   I am now going to an eye specialist who specializes in cornea damage in hopes of regaining my eye sight in the eye that is affected,   I was taken off of the cancer drugs right away but have had several PET scans since and they have been clear.  I, too, got a rash almost right after starting treatment and even using the cream prescribed it took a long time to go away as it would come back.  I also had fatigue alot.   I would not hesitate to do the immunology drugs over despite the side effects as they have saved my life, prolonged it.   Wishing you continued success in your treatments. CiennaR   ... View more

Hi Cheryl,     I am a cancer patient and what your wrote (expressed) is so relatable from patient and caretaker sides.   I honestly can relate to almost everything you said because it is so true and relative what we go through whether we are a cancer patient or a cancer caregiver.  Yes, it is a trio, husband, wife and cancer and the cancer changes your relationship with your spouse and not for the better because there are so many emotions that go along with  cancer and misunderstanding and confusion and helplessness and on and on.   You really  told it like it is. CiennaR   ... View more

Hi, I just answered your reply to my post and then saw you had your own post!  As I was on 2 immuno drugs as you are, fatigue was a big problem almost from the start.  I would sleep 12 hours at night then even take a nap during the day.   My only other side effect during the beginning of treatments was a skin rash that as treatments continued never went away even with medication.  It started on lower arms, then eventually went to upper arms then legs.   After treatment was discontinued had to go to dermatologist and he gave me steroid cream which has helped alot.  Your doctor sounds great.  Mine is too in her own way.  She is really more of a scientistbut has always been encouraging with my good results on the immuno drugs. Good luck in your continued treatments. CiennaR ... View more

Hi NotaBergen, Thank you for responding to my post.  Are you on immunology drug(s)?  My oncologist has had around 100 patients on immuno drugs and only 2 have had vision problems and she said my vision problem was the worst she had seen.  (that really made me feel good)!  I have made approximately 25 doctor visits to my eye doctor and he has done everything he knows to clear up my eye problem.   Even though I have asked my oncologist to refer me to an eye doctor at my cancer center/university hospital she has seemed satisfied to let me go to my regular eye doctor. Well, now I am demanding for her to get way more involved.  Immunology drugs are fairly new and their still figuring out how to treat the side effects that are appearing. Immunology and my oncologist saved my life (or prolonged it) but it's scary as there is still alot they don't know. Wishing you the best of luck on your treatment and if you would like to correspond again, I would like to know about what drugs your on, how long, etc. CiennaR   ... View more

Hi Rick,   Thank you for replying and the info.   I am pushing my oncologist to get more involved as it should be alot more easier for her to get info about immuno drugs and vision loss.  All's I want to know is, 'Is there a treatment or does it eventually resolve itself? Thank you again for taking the time to help me. CiennaR ... View more