Thanks for sharing your update; we always are encouraged by a good report. I hope your other issues clear up soon and that you get many more stable scan results!
<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>
I'm very glad to hear your rash is gone / improved substantially. I have been on Tarceva for about four months and experiencing almost every side effect listed, but the one that is causing me the most difficulty is the scalp rash. Reduced the dosage to 100 and have some meds that seem to be working to help it, but thanks to reading your post, I am now hopeful that someday the rash will end. Dermatology has been helpful, but your post has given me more hope. Thank you for it, and best wishes to you.
My latest update. I started some IV antibiotics for the lung infection I have (MAC/MAi) to see if things would clear up. I was scheduled for 2 treatments every day, once in morning and once in late afternoon for 6 weeks, including weekends and holidays. This started on 4/16 and I ended it on 4/29. I could not tolerate the 3 drugs. I was so sick with nausea, vomiting, the runs, and very weak, I just said I'm stopping. My doctors were not happy with me but understood. I was told no other options available on treatment for lung infection.
On 5/21, I had my regular 3 month scan....well things are still unclear and the doctors can not tell what ss happening in my lungs. Today 6/3, I saw my oncologist and she wants me to get a 2nd opinion from an infectious disease doctor and an oncologist at the Mayo Clinic in Jacksonville FL. I agreed. I'm waiting now to get scheduled.
I'm hoping to get some answers and a possible treatment plan. I'll keep you updated.
As always, I'm thinking of you (GRACE) and wishing all of you the best.
Thank you for the update. I'm sorry to hear that the treatments were so difficult for you. I'm hoping that you will get good answers and a clear plan moving forward. Please let us know how it goes.
I'm so sorry to hear about this and hope you find answers with the infectious disease guys. Let us know how it goes. I hope they have you feeling better very very soon.
I'm keeping you in my thoughts.
I thought I would update since my trip to the Mayo Clinic on 7/2 for a 2nd opinion. I met with 2 oncologists both felt I should remain on Tarceva 150 and not treat the MAC infection, at present, as the only indication of MAC is on a ct-scan (no symptoms). In reviewing some of my ct-scans, one spot is suspicious and needs to be followed closely. If it continues to grow, a needle biopsy should be done and if it shows cancer, then the biopsy should be checked for the T790 mutation. If positive for the mutation, they would recommend a clinical trial using Rociletinib. Although, not sure if I would qualify since I receive IVIg every 4 weeks. I was pleased to hear their opinion, as I want to keep things the way they are for now.
On another note, my hubby is going to Shands in Gainseville for a consultation on a stem cell transplant next week. His initial R-CHOP treatment failed (6 chemo treatments) for lymphoma. He is doing R-ICE, at present time (just starting his 2nd cycle). The R-ICE treatments require him to stay 3 to 4 days in the hospital for the chemo. His doctors are hopeful he will be a qualified candidate for a stem cell transplant. We are remaining positive.
As always, thinking of all of you and wishing you the best.
It's good to hear you're doing well and maintaining tarceva. And I'm so sorry to hear your husband didn't respond to treatment and has to move to stem cell. It's not the way 2 people should have to live their lives as if one spouse with cancer isn't enough.
My heart and hugs go out to you both,
I haven't been on here for several months, so I wanted to give a quick update. My last 2 scans show some new nodules and some spots are bigger. It is difficult to say what is going as the spots are too numerous in both lungs and my oncologist is thinking it is the MAC/MAI infection, since I am not having symptoms. We will scan again in May.
On a sad note, my husband passed away on Nov. 17, 2015 in Hospice from Large B Cell Lymphoma. He suffered from extreme pain. I miss him so and find comfort in knowing he is no longer suffering and is at peace.
My best wishes to all.
You've had a heck of a time between the cancer and lung infections. I hope you're feeling good at least some of the time.
I'm so sorry your husband passed. I can't imagine how devastating it all must be. May you find some peace and comfort.
You remain in my thoughts and I send (((hugs))) and hope you have more good days than not.
Thank you for your kind words. Jane
I'm so sorry to hear of your husband's passing. I too am wishing you peace and comfort.
I hope that you will get good results when you scan again in May, and that you will continue to update us and be sure to post any questions which may arise.