Call out for UPDATES! How are you doing?

This moderated forum is to support the needs of patients with stage IV melanoma, as well as to answer questions about treatment options and what to expect.
kylez
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Re: Call out for UPDATES! How are you doing?

Post by kylez » Mon Dec 10, 2018 3:34 pm

I got progression. I’ll know more Wednesday.

Catherine Poole
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Re: Call out for UPDATES! How are you doing?

Post by Catherine Poole » Wed Dec 12, 2018 12:55 pm

I'm so sorry. Let us know how we can support you.
Catherine M. Poole, President/Founder
Melanoma International Foundation

rkc263
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Re: Call out for UPDATES! How are you doing?

Post by rkc263 » Tue Jan 22, 2019 7:18 pm

Hello my friends.. I joined this wonderful group back in 2011 when I had the misfortune of getting a superficial spreading melanoma on the back side of my neck. It could not have happened at a worse time since my wife was ill and we were raising our grandson who was a toddler at the time. Many people on this forum reached out to me through that crisis and gave me comfort. After the surgery, meetings with oncologists and dermatologists I ended up a 1b.

Fast forward to 2018. In May I started having back problems that would not go away. I ended up in the emergency room at midnight after I could not endure the pain. They found that my right adrenal gland had swollen to the size of an orange and was bleeding. After two transfusions, bunch of pain pills and three days in the hospital I got to come home. All was well until the second week of October when I suddenly lost my ability to speak. My wife took me to my primary doctor who diagnosed it as a prescription that I was coming off of. Within a week I could no longer write or speak. My wife fearing I had a stroke took me back to emergency. After an MRI, she was told that I did not have a stroke but had a tumor in my brain. Three days later I underwent brain surgery where they were able to remove the tumor from the lining of my brain. Fortunately the melanoma was not embedded into the brain and the surgeons were able to scoop it out. Pathology results showed melanoma. Within a few days I was scheduled for a PET scan which showed what they believe to be melanoma in my spleen and the right adrenal gland. Two weeks after my release I began to regain my speech and writing abilities.

My doctors are unsure I would survive the surgery to remove the adrenal since it is filled with blood. I have had three days of focused radiation on my brain and they plan to treat the melanoma with immunotherapy and BRAF inhibitors. I have applied for a clinical trial within my HMO and it appears that I will be accepted. It involves BRAF drugs including vemurafenib, dabrafenib, trametimib or the combination if dabrafenib and trametinib. The immunotherapy drugs ipilimumab or pembrolizumab. The trial is randomized so I don't know what I will get first or what drugs I get. The clinicians explain this as a randomized test which could go up to five years depending on how I deal with the side effects or what the melanoma does. I have one test left and hope to start treatment within the next week.

I was not sure about bringing my story up since I remember how afraid I was at a 1b back in 2011. My current prognosis at stage IV has been devastating to my family and to myself. Statistics are very bleak. Unfortunately, a dear friend of ours had melanoma two weeks before mine in 2011. She had the nodular version and ended up a 2a after surgery. Her melanoma returned 13 months ago. She told me that her PET scan lit up like a Christmas tree and was in her lungs, adrenal gland and brain. They have treated her with BRAF inhibitors Tafinlar/Mekinist and she is clear today. I only hope and pray I have her success. I have always been the one in the long sleeved UV rated shirt, floppy hat covering my neck and ears, sunscreen and always in doors between 10-4. I saw my dermatologist every three months later moved to six months. I had a chest x ray and blood tests annually. I never ever underestimated melanoma and it still came back to get me. My Oncologist told me I have a beast that is after me.. Anyway.. good luck to you my friends.. Rick

jeffb
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Re: Call out for UPDATES! How are you doing?

Post by jeffb » Wed Jan 23, 2019 10:54 pm

Sorry to read about this Rick.

There are a lot more bullets, bigger ones and more guns aimed at melanoma than ever before. The army's bigger too, and more skilled. I pray a round will find its target for you. God's speed on your recovery.

Jeff

rkc263
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Re: Call out for UPDATES! How are you doing?

Post by rkc263 » Thu Jan 24, 2019 2:17 am

Thank you Jeff.. Been looking for any hope as we go along this journey. I feel that some of us never can eradicate the melanoma from our bodies.. This forum is one of the tools I cling to. Rick

Catherine Poole
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Re: Call out for UPDATES! How are you doing?

Post by Catherine Poole » Thu Jan 24, 2019 7:56 am

So sorry to hear of the return of your melanoma. You might inquire about the triple treatment whereas they are trying both BRAF/Mek drugs in combination with immunotherapy. Where are you located? We are here to support you so please let us know how we can..
Catherine M. Poole, President/Founder
Melanoma International Foundation

rkc263
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Re: Call out for UPDATES! How are you doing?

Post by rkc263 » Thu Jan 24, 2019 5:02 pm

Hi Catherine: I live in the Inland Empire of southern California. We are on the corner of LA, Orange and Riverside counties and within a 20 miles of City of Hope. Norris USC is not that far off either. My HMO Kaiser Permanente is doing the clinical trial that involves a combination of Braf and Immunotherapy treatments. I have applied for the trial and have only an MRI to complete before I get my answer. My oncologist has told me that the trial does not involve any placebos and deals with the sequence of the two (or three) treatments. So we will know in the next week. It is good to talk to you even though I could not find my original account. You helped me a lot eight years ago since I thought I was not going to make it the first time. Now it is a very different story. I am thankful I can communicate now and they got the tumor out of brain while it was still in the lining. My recent CS over a 45 day period showed minimal growth of the tumor in my adrenal gland. The spleen has remained the same. It did not show in my nodes or anywhere else in my body from the neck down. Hopefully if I get in, the results may help others in the same situation.. Rick

marta010
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Re: Call out for UPDATES! How are you doing?

Post by marta010 » Fri Jan 25, 2019 9:14 am

Rick - my husband recently achieved NED status after 7 long years of battling. He also had multiple brain mets (5 gamma knife treatments/3 craniotomies) and multiple tumors in his body. He's been on dabrafenib for 5+ years with Keytruda for the past 11 months. It's been pretty rough at times but he finally made it. I hope you find success in your treatments.

Ann

jplockwood
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Re: Call out for UPDATES! How are you doing?

Post by jplockwood » Wed Feb 20, 2019 6:32 pm

I am counting my blessings out here in Hawaii - perpetually indebted to the researchers who have developed the miraculous immunotherapy tools over the past decade..... In 2015 a very shallow (0.9 mm) melanoma was removed from my shoulder blade, and showed no signs of lateral spread. In November, 2016 a bothersome "lump" appeared in my armpit - on excision this revealed a fast-growing melanoma had invaded all lymph glands and surrounding tissues. The ensuing PET/CT scan (December 18, 2017) indicated: "Widespread metastatic disease involving both lungs diffusely, the bone marrow, the liver, and the mediastinal lymph nodes". Pretty grim, and my oncologist told me I might have only 6-9 months to live "unless you try the new UMAB therapies which might bring hope". I immediately began infusions of nivolumab and ipilimumab. After two months my liver suffered a serious auto-immune attack, that nearly resulted in liver failure. Three months of massive steroid therapy ensued, and my liver slowly returned to normal. Nivolumab infusions were resumed. A comparative PET/CT scan was run last month (January 18, 2019) with the result: "Near complete metabolic resolution of multiple melanoma metastases involving the viscera and skeletal system consistent with a therapeutic response. Mildly hypermetabolic para-aortic and subcarinal lymph nodes in the mediastinum are the only sites of suspected active disease. No evidence of new distant metastases. No evidence of locoregional recurrence of melanoma". I'm counting my blessings, but can never take the future for granted. The words in an article published last year cannot be forgotten: "Even though much progress has been made toward advancing the lives of our metastatic melanoma patients, a large portion of patients who receive nivolumab or pembrolizumab will ultimately have progressive disease".(https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5315343).

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