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Stage 4 Malignant Melanoma internal

Posted by 0716 @0716, Sep 16, 2016

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

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meg4434 | @meg4434 | Feb 27, 2017

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?

REPLY
3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 27, 2017
In reply to @meg4434 "Hi I was diagnosed stage 4 metastatic melanoma on my liver September 2015. No primary cancer..." + (show)
@meg4434

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?

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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.

REPLY
meg4434 | @meg4434 | Feb 27, 2017
In reply to @meg4434 "Hi I was diagnosed stage 4 metastatic melanoma on my liver September 2015. No primary cancer..." + (show)
@meg4434

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?

Jump to this post

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!

REPLY
twinskl | @twinskl | Feb 28, 2017
In reply to @meg4434 "Hi I was diagnosed stage 4 metastatic melanoma on my liver September 2015. No primary cancer..." + (show)
@meg4434

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?

Jump to this post

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.

REPLY
1 reply
sunflower319 | @sunflower319 | Apr 7, 2023
In reply to @colleenyoung "Hi Pam, welcome to Connect. I'd like to introduce you to a few fellow members who..." + (show)
@colleenyoung

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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Please simeoneone with liver melananoma write me.
Nusteps@aol.com

REPLY
sunflower319 | @sunflower319 | Apr 7, 2023
In reply to @twinskl "Good news Meg4434 is that you are stable. Sounds like the combo of Yervoy/Opdivo did its..." + (show)
@twinskl

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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Am having a y90 on Tues. I am so scared. This is all new to me. Please respond.

REPLY
1 reply
alfonso22 | @alfonso22 | Apr 8, 2023
In reply to @sunflower319 "Am having a y90 on Tues. I am so scared. This is all new to me...." + (show)
@sunflower319

Am having a y90 on Tues. I am so scared. This is all new to me. Please respond.

Jump to this post

Do not be afraid Y90 is ok I got it feels I felt just little burning by my liver stomach since my cancer is liver mild pain because of the procedure my was by my leg going to my liver after that didn’t feel nauseous or chills just tiredness but again every body is diferente just be positive strong we got this F$&@ Cancer praying for you 🙏🏻🙏🏻

REPLY
1 reply
sunflower319 | @sunflower319 | Apr 8, 2023
In reply to @alfonso22 "Do not be afraid Y90 is ok I got it feels I felt just little burning..." + (show)
@alfonso22

Do not be afraid Y90 is ok I got it feels I felt just little burning by my liver stomach since my cancer is liver mild pain because of the procedure my was by my leg going to my liver after that didn’t feel nauseous or chills just tiredness but again every body is diferente just be positive strong we got this F$&@ Cancer praying for you 🙏🏻🙏🏻

Jump to this post

Thank you so much

REPLY
mikenjoy76 | @mikenjoy76 | Jul 18, 2023
In reply to @lynnkay1956 "They have basically moved away ( at least for now) conventional chemotherapy and are now using..." + (show)
@lynnkay1956

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.

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After having a third Melanoma 8 years ago the first was negative and most recently 2 were positive 1 removed 5 years ago and 1 more 6 months ago, this last time 2 Lymph Nodes that were negative we have decided that the best move forward would be to start Keytruda. I have just had my first Keytruda infusion and feel great. No obvious side effects at this point, no loss of energy or pain!

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 1, 2023
In reply to @mikenjoy76 "After having a third Melanoma 8 years ago the first was negative and most recently 2..." + (show)
@mikenjoy76

After having a third Melanoma 8 years ago the first was negative and most recently 2 were positive 1 removed 5 years ago and 1 more 6 months ago, this last time 2 Lymph Nodes that were negative we have decided that the best move forward would be to start Keytruda. I have just had my first Keytruda infusion and feel great. No obvious side effects at this point, no loss of energy or pain!

Jump to this post

Just checking in @mikenjoy76. How are you doing on Keytruda? How often do you get infusions?

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