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Guest Ashley Keir

Response to immunotherapy

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Guest Ashley Keir

My mother just had her 4th treatment of opdivo. I am just curious to see when others started to respond or feel better with this treatment?? She had a few good days after her third treatment, but then back to status quo of anorexia, nausea, extreme fatigue, and chest/back pain. Symptoms no worse than prior to treatment but not any better. Is it normal to have a slow response to immunotherapy?

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Issues like extreme fatigue, weakness, fever and low blood pressure are the side effects of immunotherapy. It doesn't mean that therapy is not worthy. Since the therapist tries to improve immunity they will try to improve the blood cells and destroy cancer cells. Such changes in the body may lead to fatigue or fever. But it is not an issue of worry.

Try to have proper diet and medicines in such cases.

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My mom is also taking Opdivo, she had her second round today. She is also experiencing the baseline lack of appetite, fatigue, weakness, and also really severe constipation. Has anyone else had to deal with bowel issues while in treatment?

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Guest Kelletah

My husband tried Opdivo recently. He had a few treatments and we thought he was responding well. In fact he felt so well that we were able to go on a cruise to Europe with the doctor's approval.

   When we came back, my husband had a CT scan and the results were not great. The tumors on his lungs were dead, but the Cancer had spread to his liver and grown since his last CT scan. 

His doctor now wants to change his clinical trial to docetaxel with or without some other inhibitor instead. We are both disapointed that the Opdivo didn't work as well as we had hoped.

I'm very concerned about switching his clinical trial to another form of chemotherapy that is said to be inferior to Opdivo. I would hope there is another clinical trial for immunotherapy that can be tried on my husband instead. He just had a liver biopsy, I hope they can find the gene mutation and give a more effective form of treatment and to prolong his life. 

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Hi, I am new.  My mom is starting opdivo the week of NYE, will she feel sick the whole time?  How can I help?  Doctor gavecher1-3 years to live. Are the side effects really horrible

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don't believe the 3 year spiel... only god knows how much time we have... I have no experience with the new treatments or the Opdivo but look forward to reading up on them...

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Guest RJ

Dad went for 12 week checkup today - has been on Opdivo and has been feeling pretty good.  However, he hasn't been on any chemo yet.  Everything I read about Opdivo says that it is for "those who have previously been on platinum-based chemo."  The doctor, who has been the only oncologist that my Dad has seen, seemed to think that Dad had been on some chemo previously.  I'm concerned that the doctor hasn't been paying attention, since he never prescribed chemo, just Opdivo - and I'm worried about what the concequences of having not had chemo on his prognosis.  Any thoughts from the group?

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Guest Guest

Hello, I have had my first round of opdivo. I was switched to it after being on chemo for 4 rounds. I have been so extremely fatigued since starting treatment period. Was told that the fatigue would get less with opdivo, not sure how true that is. I have stage IV Non small cell lung cancer that spread to my thyroid. Wish I had more answers for what lies ahead and what to expect

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I wish I had more answers for what lies ahead also.

 

There is this ever present uncertainty in lung cancer.  I'm a 12 year survivor and wish I had answers for what lies ahead.  In speaking with my oncologist, now more than a friend than a doctor, he validates my uncertainty.  He's seen the disease re-occur in long tenured survivors, and moreover when it does, it rages through the body like water gushing through a failed dam.  I still have two scheduled sessions with him yearly with diagnostics and scanziety and uncertainty.

 

For me, it comes down to this.  When one seeks treatment for lung cancer, one is choosing life.  It won't likely be the life enjoyed before diagnosis, but it will be life.  If life is the choice, then live it.  Embrace the present, discard the past and avoid the future. Do something enjoyable and meaningful each day you have.  Find joy today, wake up tomorrow and find it again.  Examine your reflection in the mirror in the morning and if you don't see an expiration date stamped on your forehead, enjoy the day.  Don't let lung cancer take over your life.

 

You are most welcome here.

 

Stay the course.

 

Tom

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I didn't qualify for opdivo. Wrong genes in my tumors. Now we are waiting to see if I can get into another trial as many drug companies are jumping on this bandwagon.

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Guest Ruh

Look up lag525 trials is recruiting now , not sure how this site works or how old your post is . Just offering my 2 cents

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Guest Ruh

Look up lag525 trials is recruiting now , not sure how this site works or how old your post is . Just offering my 2 cents

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Opdivo is currently approved, even in people with certain mutations...has there been discussion of which mutations are keeping you from being on Opdivo?

 

Meanwhile: keep an eye out for NCI_Match trials, and JAVELIN trials. Both are endeavors to open up hundreds of new immunotherapy trials in the next few months. 

Another idea: on clinicaltrials.gov, search "avelumab." That's the immunotherapy drug that my mom is taking as part of a trial.

LUNGevity also has a clinical trial matcher tool, on this site. 

 

Keep us posted! <3

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Hi, looking for some input into Opdivo, presently on  navelbine on a three week on, one week off cycle. Have been on this for close to 2 years, prior to that I was on platinum-based chemo for close to another two years. I am a eight year survivor who is 72 years old, I wake up each morning and praise the Lord for another day given to me. My doctor and myself have talked about this change due to the change of cycle, opdivo being one on one off.  My cancer is stable and has not change in a while. It did migrate to my brain several years back, I had one treatment which I believe is called the radiation knife and nothing has returned.  Trust my doctor without and question. Just looking for input. Thanks and bless each one of you as we deal with what we have.

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Nebob5,

Welcome here.

I don't have experience with Opdivo other than having read about it.  I have a lot of experience with platinum-based chemo and I'm a 12 year survivor.  I evan had a CyberKnife treatment but mine was to the lung.

I hope my post will bring members who've received Opdivo to tell you about their experience.  In the meantime, here is an article from the LUNGevity website.  There are many more - https://www.lungevity.org/about-us/media-resources/news-from-foundation/lungevity-foundation-applauds-fda-approval-of

Stay the course.

Tom 

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