Hello everyone. Marks cancer is back his liver is full In 2017 when Mark was 1st diagnosed it was everywhere, but his Brain so he was 1st put on Opdivo/ Yervoy. Stopped Yervoy after 2 treatments. And a month or so later put on BRAF meds for about 6 months together. Then continued Opdivo alone for another year. He is going back on BRAF meds starting next week, but the Dr is not doing the Immunotherapy right now. My question is Did others do both at the same time? Or was it just because Mark was so ill in 2017. His new Dr said something about his 1st Oncologist being a pioneer that way and there wasn’t evidence it worked together. She also is concerned about knowing which side effects are caused by which meds and if one is working or not. I feel like I am starting all over again from square one. I went over all my notes from that first 2 yrs and just reading them scared me. Mark still wants to work. I don’t know how this is going to go
Michele
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Really sorry you and Mark are back in this position. I hear the concern about efficacy and side effects. There is new research out/ coming out at ASCO. If you’re not being treated through a NCI center strongly suggest a second opinion. It’s ok to feel scared. It’s also ok to ask questions about risk and benefit. Peace
My husband took Tafinlar and Mekinist simultaneously for a year and a half. Since his scans were clear doc took him off all meds and said he could go back on same regime if a tumor shows up. So far so good for two years now but we know this beast will rear its ugly head again. As you are experiencing now. Prayers for you and Mark.
Hi Michele, I read this article a couple of weeks ago, it may interest you in the context of giving immunotherapy and targeted therapy drugs together. However, it may be different if you are sequencing them , one after another. hope this helps, keep us posted... medpagetoday.com/hematology...
Hi Michell from Carol ( aka HehHeh) - My husband Roger did well on Opdivo with about successful 4-5 monthly infusions. It cleared up most of the Melanoma on his head. About 2 months ago he was taken off of it because of "drug-induced Hepatitis.." Roger is slow to recover a healthy liver. He feels very weak and has a swollen hand and a swollen opposite foot as a result of his reaction to Opdivo.
Since your husband was able to take Opdivo for a year - maybe it would be worth a try all by itself ???
Hi Carol. Thank you. Yes, theDr’s are hopeful that they will be able to re-introduce the Opdivo at some point, and it will work again. It is hard to say that, but I must have faith that God has got this🙏🏻
Hello, thank you for asking about Mark. He has been on the Taf/Mek for a little over 2 months now. He had a very tough start, but he seems to be handling all the side effects a little better now. He had scans 2 wks ago, and the results weren’t what we had hoped for. His liver has not got significantly worse, but nothing has gotten better. His liver is still full of cancer. He for now is staying on the Taf/Mek. He is having labs in a week to see if his liver is still able to tolerate the chemo. Certainly praying that that is the case, and this medication starts working. We knew this could come back, but after almost 4 yrs of NED we were kind of praying not. I’m sorry I haven’t been on here sooner to update a little. I am also taking care of my 93 yr old Uncle who I just had to place in a board and care, a and it is really tough. How is everyone else doing?
So sorry about your uncle and you sure seem to have a full caregiver schedule. We know stable is also good right? Did the oncologist have any thoughts about the last scan results? Is he being treated in an academic cancer center? Sending positive vibrations for the 2 of you <3 Dorothe
Dear Michelle, I hope you and Mark have a good care team and access to treatment options, while he remains hopefully stable, and that you have support. Nadia
hello, I’m so sorry I didn’t see this earlier. So much has happened. Mark was taken off the Tafinlar/ Mekinist in November and was hospitalized over Thanksgiving for a week . We were in the airport on our way to visit my grandchildren in TN and he got violently ill with extremely high fever, vomiting, and severe confusion. He was placed back on 1/2 dose but 3 wks later on Christmas Eve me suffered the same effects and so had to stop completely. I was finally able to convince the Dr in-between that time to put him back on the Opdivo and Chemo meds again simultaneously as he did well in the protocol before. She then suggested that we try the BRAFTOVI/MEKTOVI which took us over a months to get the insurance to approve. He’s been on that for 2 wks now and so far he is tolerating it ok. We won’t know for a few months if it is actually working. He has scans next week to just see where our starting point is again. He suffers off and on from gout so we are not exactly sure what is causing what pains he is having. His numbers are under control for the gout but his rheumatologist wants them lower. His liver is not handling any of this as well like the 1st time so that is a great concern. I am praying we can get him to a point of NED again and able to enJOY a few more quality years together with him and our family. This cancer is just so frightening. Just when you think you may have the answer. It kicks you back down. How are you and your family doing. I’m so sorry I haven’t Checked in earlier. My Uncle passed away on12/5/22 and it has been a lot dealing with both Mark and with all that I have to do with my Uncles estate. Gods Blessings to you.
Michelle, so glad you were able to give us such a detailed answer. I am very sorry you are going through all of this again, and that is he is so sick from the side effects. If Taf/Mek is too hard on the system, changing to Braftovi/Mektovi seems like an excellent idea, and hopefully, it will give him a better quality of life and eat away the melanoma.
How are you holding up with all that's happening in your life?
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