Mayo Clinic Connect
I woke up with a terrible cold this morning. My next immunotherapy treatment is scheduled for next Friday; 5 days from now. Will I still be able to have my treatment if I still have this cold?
Liked by Merry, Volunteer Mentor
Good morning @suea and welcome to Mayo Connect. I'm sorry that you feel so awful. Colds are so inconvenient, to everything. I would wait until Tuesday or Wed and call your doctor to see if you should wait for your next treatment. Since I am fairly new here I don't know your history. Can you tell me about yourself? What kind of cancer do you have? If you have a pulmonologist I'd call her now and see if she can help with a Z pack or something else to help you get rid of your cold quickly. I have multifocal adenocarcinoma of the lung and my pulmonologist prescribed it for me so that I wouldn't have to delay a procedure that I needed.
I have heard many different things about immunotherapy but I don't know much about it. How are you holding up? Are your side effects tolerable? Can you tell me more about it from you special case?
Liked by Colleen Young, Connect Director, lorib
I just got done with 1yr of treatment's with Immunotherapy. My side effects were tired more than usual, basically that is it. Before that I had 42 radiations and chemos at the same time. I would take Immunotherapy over anything else. Also with mine I didn't lose my hair.
Liked by Colleen Young, Connect Director, Merry, Volunteer Mentor
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@lorib– Hello- That's fabulous news for you! Sounds like you had a run for your stamina with your radiation and chemo at the same time. How did you ever get out of bed? I had 4 months of chemo for lung cancer, twice a week and I was tired! tried! tired!
So far there isn't an immunotherapy for multifocal adenocarcinoma of the lung but there is a lot of research going on. Promising for the future.
How are you doing now? Are you on any meds for your cancer?
To answer how did i get out of bed, I lost my brother 1yr i was diagnosis to cancer. I knew it he didn't want me up there with him yet.. So i knew i had to do it 5 days a week, ( don't get me wrong by Wed I had to make myself go). I am done with everything right now, CT in 3 months. Meds, I'm not taking anything for now except for my attitude. In general I do have a positive attitude, and that's what keeps me going. Always try to look on the bright side and stay away from negative people if at all possible. LIFE IS A WONDERFUL GIFT. ❤❤
My cold is much better so next immunotherapy treatment on Friday is a go.
I have stage 3b adenocarcinoma of the lung which changed to stage 4 when it went to my brain in July.
I was diagnosed in January 2018 by Mayo. It had been missed on a chest x-ray by my local radiologist in September 2017.
I started with chemo in February once a week for 6 weeks and 30 sessions of Proton therapy. My PET scan was clear after these treatments.I was nauseated from the chemo but got it under control week 4. Proton side effects were minimal.
I started Infinnzi immunotherapy at the end of April 2018.
In July I started getting severe headaches. Found out I had 4 brain tumors. This is a typical progression of lung cancer. Two were removed surgically and two we're removed via gamma knife. Since then PET scans and brain MRIs have been clear.
I feel good. My only side effect from immunotherapy is fatigue which is a small price to pay! I am so grateful I went to Mayo for a second opinion. They saved my life and have given me hope for a longer future.
Liked by Colleen Young, Connect Director, cindylb, Merry, Volunteer Mentor
@suea813 – That is great news! I now have a clod, lol. Looks like the holiday season this year is also cold season. How often do you have scans?
I have scans every two months. Next scans are January 2. Hoping and praying for clear results!
@suea813– How did your scan on January 2 go?
Lungs are still good. I have a small tumor in my brain again which they are watching. Next PET scan and brain MRI are March 28. Will eventually have another gamma knife procedure for my brain. Will continue with immunotherapy every 2 weeks indefinitely. Only side effect at this time is fatigue which is a small price to pay. So grateful for my team at Mayo in Rochester!
Liked by Colleen Young, Connect Director, Merry, Volunteer Mentor, bluelagoon
Oh Sue this is good news for your lungs! Is the small tumor affect anything for you? Mayo is a great place.
Small tumor in brain is not affecting me at this time. Thinking positive!
@suea813– Always! I am relieved to hear this!
suea813 – Sorry to just barge in here on your conversation but I'm so glad I found you!! If you feel well enough and have time will you please share more with me about the immunotherapy treatment? My husband was diagnosed with a lung tumor (small) and spread to a lymph node back in February 2018. The pathology doesn't show up as a specific type of cancer (possibly lung, possibly GI). We've been scanning and testing and frankly waiting for the cancer to show up somewhere other than the lung. His diagnosis was Stage IV Terminal Cancer of 'unknown primary'. After 18 months the doctors now feel fairly confident this is a primary lung cancer (because there is no cancer anywhere else) but there are still serious questions. Anyway………
At our visit with the doctors yesterday they suggested that he has a very small amount of PDL1 and that Iniinzi might work…..wondering how you felt during treatment and now and how it's worked for you? My husband would have to do radiation and chemo to qualify to use immunotherapy and he's opposed, but if we knew that the immunotherapy might not be so bad, I might be able to get him to do a bit of chemo and radiation to get to the immunotherapy.
Anything you can offer would be most appreciated!
Hugs and good wishes for your continued improvement!!
I'd also like to bring @2onlow8 and @justapril into this discussion as they have some experience with taking IMFINZI® (durvalumab).
Cindy, I can understand your husband's reluctance to do chemo and radiation. It's not something one looks forward to. I can also understand your desire that he try everything possible. From what I understand according to this article (http://chemocare.com/chemotherapy/drug-info/durvalumab.aspx), durvalumab is used in people whose disease has not progressed following concurrent (given at the same time) platinum-based chemotherapy and radiation therapy. How many chemo/radiation treatments would he have to have?
Liked by cindylb, Merry, Volunteer Mentor
He would have to get 2 chemo treatments and some form of radiation treatment. Our oncologist is checking with the radiation team on that although probably about 4 weeks radiation. From what I understand the chemo and radiation are FDA requirements and also it makes the cancer more receptive to the immunotherapy. It's not much (if my husband will agree at all to the chemo and radiation)……so that's why I'm trying to get as much information for him so we can make an educated decision.
First they said he'd be dead in months, then a year and now they say they have no idea……it might just go on like this for a very long time. The cancer tumor isn't growing but a new nodule has appeared that is very small in the same lung and might be another cancer or nothing at all.
My husband hasn't been feeling well for the last 3 months or so though. He has other health issues, COPD and peripheral neuropathy (which is quite bad in his feet from an accident many years ago). The neuropathy is another reason the doctors and my husband aren't looking too hard at chemo.
The decision now is……….could this immunotherapy hold off or even cure his cancer? Or would it be a year of more 'picky pokey' (that's what my husband calls this medical intervention) and no real upside. No one knows really.
We also don't know if the reason it hasn't grown is because it may never advance, it's being held off by the high doses of CBD and THC from the medical marijuana or if it might just go crazy some day soon.
We have no percentages, no protocols, etc. But at this follow up appointment the doctor seemed excited about this immunotherapy and I think, if side effects are reasonable or mild, that's the way to go. We'll have to wrestle with the chemo and radiation portions though.
Thanks for all your help!
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