Mayo Clinic Connect
I Stage 4 malignant melanoma in my small bowel and my liver. Both were surgically removed. I was on Leukine shots for almost 2 years. Just want to see if there are other people out there that experienced any of this diagnosis? Pam
Hi Pam, welcome to Connect. I’d like to introduce you to a few fellow members who have experience with melanoma. First, please meet @lynnkay1956 who is also living with stage 4 melanoma, as well as @lindabf and @psfrazier who are caregivers to family members who have metastatic melanoma. @texas7777 and @cynaburst have had early stage melanoma.
Pam, are currently not taking any treatment?
We look forward to getting to know more about you.
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As of Aug.17th after seeing my Oncologist at Mayo he said it would be alright with him if I wanted to stop the Leukine. I had started taking the Leukine in November of 2014. So it’s almost 2 years. I was having very little energy while I would be on it. I had to take it for 14 days on and then 14 days off. I could always tell the difference when I was on it. I also have Fibromyalgia so the further along I was on The treatment it seemed to effect my energy level. I have been off since Aug.16th and can really tell the difference. I also gained 20 pounds while on the Leukine. So far I have lost 5. I am happy about that. I will be going every 3 months again for my PET SCANS, which is perfectly ok with me. So I am tumor free since Dec 29, 2014. That was the day of my liver surgery at Mayo. I would love to hear how other people are doing.Best regards,Pam
Thanks for the additional info Pam. It is good to get to know more about you. How is your fibro now that you are off Leukine?
I was offered Leukine injections after my thoracotomy in 2010 but after researching it, in my case it wouldn’t have benefited me- so I rejected it. I was stage 4. Back in 2010 melanoma was basically a death sentence. It was explained to me leukine works like interferon- which if it did anything would have just prolonged time to progression. My melanoma was found in the lymph nodes and the studies had showed it wouldn’t benefit me. After going hither and yon I found a clinical trial. I did Nivolumab ( anti-PD-1) in a vaccine trial along with 72 peptide injections. I have been NED for over 6 years now…considering the Mayo doc’s and most all oncologists for that matter, gave me 6 months I am blessed. Lynn —-Hang in there.
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My malignant melanoma was cut out and no further signs; thus no experience with any drugs/therapy. I am however, very leery of chemo-type drugs (not sure if the drugs that have been mentioned are chemo or not) for various reasons. From the limited time on this Mayo discussion board, I will say that there are folks on here that really try to help you out/answer your questions; thus, come back often! They also seem very caring and I would bet even say a few prayers for you. If anything progresses with any of my issues (PVC’s, sinus packed full of polyps, etc…), Mayo is on the short list for help.
Liked by Colleen Young, Connect Director
They have basically moved away ( at least for now) conventional chemotherapy and are now using targeted drugs like the B-raf and MEK inhibitors and Immunotherapy drugs like Ipilimumab ( yervoy) Nivolumab (opdivo) and Keytruda…they basically take off the brakes and kick up the immune system ( the opposite of chemo which kills fast growing cells, good and bad ones) . IL-2, interferon were the oldest drugs approved by the FDA for melanoma. Leukine is different in that it is a man-made protein that stimulates the growth of white blood cells in your body. Interferon is also a group of proteins known as cytokines, molecules used for communication between cells to trigger the protective defenses-they are found in the body and also man made…they don’t do much for melanoma but do have some nasty side effects. Ipilimumab ( yervoy) Nivolumab (opdivo) and Keytruda are considered the gold star of melanoma treatments now. They are also doing TIL therapy but it is more complicated and does not have as high of response rate as Nivolumab or Keytruda.
Thank you for the information. Just wondering are you cancer free? How long?
That’s great. I also had my tumors removed and nothing has showed up. I Will be going every 3 months for my PET SCANS. I will prayer for all who have cancer. Thanks for sharing.
Thank you for sharing your story. I am very happy to hear you are tumor free!! I will also be followed by Mayo Clinic for the rest of my time here.
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Thanks for asking. It seems better. I do have more energy but I still find I can only do so many tasks in a day. We are getting ready to sell our house and move back to Wisconsin, so I have been busy cleaning and packing and painting to get everything ready. I do rest when I need to.
Welcome back to Connect, Lynn. I love it when you pop in with such great information, experience and support for others. What a treasured member of this community you are. Thank you.
Pam, you were asking Lynn how long she has been cancer free. In an earlier post, she mentioned NED. In this case, she wasn’t referring to a man’s name but rather an acronym. NED = no evidence of disease. The medical profession shys away from saying “cancer free” and prefers the no evidence of disease phrase, meaning there’s no sign of cancer that they can see through all the tests.
Lynn reports that she is 6 years living with NED. How about you, Pam?
Hi I was diagnosed stage 4 metastatic melanoma on my liver September 2015. No primary cancer point. The tumor was 15cm X 8 cm…. Inoperable. Fortunately the immunotherapy is working . I asked my oncologist is I would ever get to the NED status and she was I don’t think so. I’m stable , no spreading , and the tumor has shrunk a great deal.
Is there anyone that is in a similar situation?
Hi Meg, welcome to Connect.
You’ll notice that I moved your message to this existing discussion about metastatic melanoma. Reading back through the earlier posts, it appears that Pam (@0716) has a similar experience of being diagnosed with metastatic melanoma found on her liver and small bowel.
In this group you’ll also meet @twinskl @lynnkay1956 and @texas7777.
Meg, great to hear that the immunotherapy is working and there’s no spread visible. We look forward to getting to know more about you.
Thank you. I am treated at Smilow Cancer Hospital which is part of theYale-New Haven Hospital in New Haven CT.
I did the 4 doses of the combo ( Yervoy & Opivido) I developed some sarcoids in my lungs and on my elbow, wrist, and knuckles. I had to stop opvido for 10 weeks and was treated with steroids by the pulmonologist.
Lungs are clear!
I have been on opvido since April 22,2016 every 2 weeks until Beginning of February and the protocol is now every 3 weeks.
I have fatigue and achy joints . I can live with that.
They do not know the primary area but do know the melanoma traveled thru my blood.
I had my last scans in January and there was no shrinkage from my previous scan 3 months prior. I have the MRI on my brain and a CT scan on chest, abdominal and pelvic areas.
So , I’m living with this and hope and pray that it will shrink and not spread!
Good news Meg4434 is that you are stable. Sounds like the combo of Yervoy/Opdivo did its work and reduced the tumor. It is my understanding that sometimes those drugs take time to work, so patience is impt. I pray your tumor continues to reduce.
I had been treated with Yervoy first, followed by Opdivo for my leg melanomas. I was lucky, after 2 infusions with Opdivo, all the melanomas disappeared – a true miracle. I could only withstand 6 infusions as my body went into total inflammation and Dr decided to stop the treatment. I still have some side effects (arthritis, joint pain, eye irritation, low sodium/hemoglobin counts) but all manageable. Prednisone has been my friend of late! But I am cancer free almost 2 yrs now, and very grateful.
Wish I could be of more help, but my experience has been limited, as the melanomas have not travelled beyond my leg, as of yet. I stay positive, but I do understand the melanomas are never curable, we just have to stay one step ahead.
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