mbachini
Forum Replies Created
-
Posts
-
I also have experienced hearing loss and tinnitus from the Gem/Cis combo…..cisplatin specifically. I was not told up front to watch for these side effects but they were confirmed as a result of the chemo. I have the exact as described above, tinnitus varies from day to day and hour to hour, but the hearing loss is always present especially with background noise. Unfortunately, I have not had cisplatin for over 5 years and there has been no improvement of these side effects, along with the severe neuropathy I have in my feet. I did about a total of 6 months on this chemo regimen.
I have talked with several patients who have experienced the same, but I don’t think we hear much about it because it is just one of those trades you make to stay alive. As I always say, I can live with these nuisances!!
Melinda
Dear Tim and Julie,
I am so sorry I missed your message. I will try and email you through the forum again, and maybe like Gavin suggested checking your spam folder if you don’t receive it. I was at NIH on the 15th but it was a whirlwind trip, I ended up flying home earlier because of horrible winter storms in Montana. I came home to almost 2 feet of snow and wind chill factors of 32 below zero!!!!
I hope Sean is feeling better and that he received his treatment okay.
MelindaOh sweet Julie, I am so sorry to hear this news. I will be praying for you like crazy. I have always followed your posts, and have been absent from the boards for several months and am now just catching up again. Sending much love and hugs.
MelindaDecember 1st marked seven years from the day of my diagnosis. On one hand, it feels like forever ago, and on the other hand it feels like yesterday. Liver resection, three VATS, right lung thoracotomy, chemo regimens, clinical trial treatments, and now Pembrolizumab. It is crazy that this is the first time I can actually see a possibility of being NED. …….so much to be thankful for! !
MelindaI would love that! I sent you an email through the forum of this board, it has my contact info. Let me know if you received it, and we can make plans. Sending lots of hugs and prayers for great scan results for Sean. Take care!
MelindaKris is larger than life and can sing like a pro…….praying we get to do a little karaoke again in the near future!!
That is great news! I will be at NIH for treatment and scans on the 15th,16th, 28th, and 29th. Please let me know if you will be there at those times, I would love to meet up and say hello. Take care,
Melinda BachiniDear Nancy,
I am so very sorry for the loss of your mom. Sending prayers for strength, peace and comfort to engulf you and keep you strong. If you ever need to talk, you know how to reach me, I have been thinking of you lots these past few weeks. Take care and lots of hugs to you.
MelindaDear everyone,
I am long overdue for an update on the clinical trial I have been in at NIH. In the past five years the trial has been amended several times as progress is being made. The last treatment I received was in October of 2013. I received about 126 billion mutation reactive t-cells, and that has been what has fought my cc. I have had a great quality of life, with no side effects after treatment.
The end of August this year, I went for my checkup. My tumors had been looking like they were trending upward for the most part of this year, the growth was minor, but the trend was up. The research team made the decision they wanted to do surgery to remove tumors from my right lung to further study them and see what was going on.
In September, I had a thoracotomy on my right lung. Good news is they were able to remove all remaining tumors in that lung. Bad news is it was one of the toughest procedures I have had to date. They were able to study the tumors, re-sequence them, and decide the next plan of action. I still had the same mutation ERBB2IP, and there was still mutation reactive t-cells present at the tumor site. They also did PD-L1 immunohistochemical staining on my tumors. The tumor cells didn’t express PD-L1, but were infiltrated with a lot of macrophages that highly expressed PD-L1. Based on these findings they felt it was plausible that the high expression of PD-L1 in the tumor environment could be actively suppressing the high frequency of PD-1 expressing mutation-reactive T cells that are in my tumors.
Based on these findings, they started treating me with Pembrolizumab on October 13th. After my second dose, I had scans done. The scans showed significant shrinkage to the tumors in my left lung…..which is the only place I have tumors left. I will do two more treatments and repeat the scans at the end of December. I am beyond thrilled with these results.
Just for reference, I wanted to tell you that Pembrolizumab has been added to the trial, but was added after I received my cells, so future patients will be getting it with the initial cell treatment. I am technically on a compassionate use protocol off the original protocol since I am the first to get the Pembrolizumab after cell infusion. (3 years after in my case)
Sorry for the long update and explanation and sorry for the delay in updating this post.
Hugs and prayers,
MelindaTim and Julie,
How is the treatment going for Sean on this trial? I just wanted to check in for an update.
Thanks,
Melinda BachiniOh my dear Barbara,
What wonderful pictures and a spectacular event! You are amazing and I love you to pieces. Thank you so much for the effort you put into this fundraiser for the Foundation, for awareness, for a cure and for the sweet memory of your love for Jacque. It is on my bucket list to attend the event soon!
Love you,
]MelindaDear Sharon,
I am so very sorry for the loss of your Phil. I hope and pray that you will have peace, comfort and strength in time. Thank you for wanting to give to others who are going through what you have experienced. That is a priceless gift that only comes from the heart.
Thank you to your son in law for bringing awareness and running for Phil, how awesome!!
Love and prayers,
Melinda
