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Hello, I'm a New member and here is my story

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Hello, I'm a New member and here is my story

Posted By
REESE8590
2/11/2020 5:04pm
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Replies: 4

Hello everyone, my name is Kevin. Let me first apoligize for the poor grammar, misspelled words or incorrect terminology i may use. I would like to share my story with melanoma along with my current status and ask opinions on what I might expect going forward. I was first diagnosed in 2013 by a mole i had biopsied on my neck. At the time I lived in Maryland and didnt have health insurance. I had to go through state assistance and the care that i received was mediocre at best. I was sent to a surgeon who did an Excision of the site, removed the mole and some of the surrounding area along with some lymph nodes. For whatever reason...probably not having insurance...i was not offered any kind of post op treatment or therapy of any kind.
During recovery from that operation, i moved out to the chicago area to be with family and have been here ever since. In 2015, i noticed a swollen lymph node in my neck, just a few inches away from where my mole removal was. This time i had insurance, so i did some research on the best melanoma doctors near me. I settled on Dr. Gajewski at the University of Chicago. I went in for my visit and they did a fine needle biopsy of the swollen node and it turned out that the melanoma was back. The plan of attack this time was to have surgery, a full left side neck disection. The tumor and several lymph nodes were removed. Dr. Gajewski suggested that for post op treatment, i sign into the immunotherapy clinical trial that was going on at the time for Nivo and Ippy. It was a blind trial and to this day i still do not know which drug i received. I will say...it was a much better experience than my first surgery. it was nice having a team working on my case. So, anyways I do the clinical trial, which was supposed to be treatments for a year, i think. I ended up being removed from treatments because i had a side effect. The CT scan i had after being on the trial for 3 months showed a spot developing on my right lung. So they immediately wanted to have that spot biopsied. I was sent for a CT guided lung biopsy. As many of you know...this isnt the most pleasant expierence. Apparently most of these are done as Outpatient surgeries. Mine was Inpatient and i was kept for 1 night for monitoring, plus i had a drainage tube, that they removed the next day. What a painful moment that was.
The news was great, the spot on the lung was not cancerous. However, i developed Sarcoidosis as a result of the immunotherapy. Certainly news i could live with.

All that said...so far my questions to my fellow patients are: Has anyone else here developed Sarcoidosis ? if so, what has been your expierence with it ? Have you expeirenced any flare ups ? Also, is anyone else here a patient of Dr. Gajewski's ? Or a patient at University of Chicago ? Just curious your thoughts on the University and care youve received there.

So as of this past August/2019, I went almost 4 years with clean scans. My most recent scans, January/2020, now shows a nodule growth on the left lung this time. 14mm x 15mm, along with a couple enlarged lymph nodes. I am currently awaiting a phone call to setup another CT guided lung biopsy. Naturally, I am anxious to find out if the melanoma has metasticised to the lung. Of course my hope is that it my Sarcoidosis flaring up. I dont know how realistic that hope is. I have read that its a possibility. Which leads to the rest of my questions...what have been some of your expierences with development on the lung ? What can i expect as my next treatment if it is determined that melanoma has spread to the lung ? I am 35 years of age and feel great BUT i know that doesnt necassarily mean anything. Below is the reults of my last scan. Thanks to anyone taking the time to read this and respond !! I am VERY appreciative and grateful for any discussion suggestions.

CLINICAL INFORMATION: Male 34 years old Reason: patient in follow up following treatment
on clinical trial. please identify and measure index lesions per recist criteria. compare
with previous images History: metastatic melanoma

TECHNIQUE: Axial CT images are obtained through the chest, abdomen and pelvis after
administration of oral contrast and 100 ml intravenous Omnipaque 350. Coronal reformats
were also generated and reviewed.

COMPARISON: CT dated 8/3/2019

FINDINGS:

CHEST:

LUNGS AND PLEURA: There is a new nodule in the left lower lobe measuring 15 x 14 mm image
#74, series #205 compatible with metastatic disease. Likely postsurgical changes in the
right middle lobe, unchanged. Other scattered micronodules are grossly stable.

MEDIASTINUM AND HILA: Index right hilar lymph node is stable measuring 10 x 11 mm image
#30, series #201. However interval increase in the size of the left hilar lymph node which
now measures 2.4 x 1.3 cm image #35, series #201. This node was measuring 6 x 10 mm image
#43, series #301 on the previous study. More posterior pericardiac node on the left side
is also increased in size within the interval.

CORONARY ARTERY CALCIFICATION: None.

CHEST WALL: No significant abnormality noted

ABDOMEN:

LIVER, BILIARY TRACT: Multiple small hypodense lesions in the liver including the index
lesion measuring 6 mm in the right lobe on image #64, series #201 are stable. Metastatic
disease cannot be excluded.

Hi Kevin,

Sorry for all you've been through!! Let me reassure about your first bit of history to start. Neither in 2013 nor in 2015 was there any "adjuvant" (treatment once the tumor is removed) like immunotherapy FDA approved. As of 2017, both targeted and immunotherapy options were FDA approved for some Stage III patients. You were part of making that happen through your trail participation in 2015, so thanks for that!!!

As you are well aware, you can't know what you are dealing with until it is biopsied. So you are probably looking at going through that again, sorry. And, given your history - you may be dealing with another lung nodule that is NOT cancer of any kind including melanoma.

However, if it does turn out to be melanoma these are the things that come to mind:
1. Your doc should be able to have your status "unblinded" from you prior study participation so you can know what treatment you were actually given.
2. You need to know the BRAF status of the tumor. If you are BRAF positive, you could utilize targeted therapy.
3. If you were given only a single agent in your trial - then the ipi/nivo combo may be a reasonable choice for you now.

Here is a primer I put together of current melanoma treatment options if you are interested: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melan...

There are even more treatments showing promise in trials. But there is certainly hope. I will start by hoping that this is just another benign lesion! I wish you my best. Ask more questions as you have the need as there are many smart and caring peeps on the board. Celeste

Thanks so much Celeste for reading and taking the time to reply to my post. Im staying positive all the way no matter what !! I will certainly keep updating as i get more information.

Welcome to the board, Kevin! I wish you didn't have a reason to find us, but now that you're here, I think you'll find it helpful.

October 2017 primary scalp WLE; SLNB; partial neck dissection (PND). July 2018 recurrence in neck. August 2018 second PND. September 2018 started Nivo. December 2018 SRS for brain met January 2019 Pisces trial IL-12 + Pembro. .

 

Hi, Kevin: I’m sorry you are going through this and wish you much luck with biopsies should you need them. Celeste has provided great info already and i would just add that i think it’s worth asking your doc about the lesions that the CT is calling out in your liver. The report claims that these are stable but without having a PET CT, you can’t rule out metastic disease at that site. And these are stable based on comparison to what? In fact, could a PET CT help determine if there is metabolic activity in the lung and therefore help avoid a biospsy of that site? I don’t know how sarcoidosis shows up on a PET as it isn’t a side effect I had from my Ipi/Nivo treatments. It might make sense to have your doctor address these questions and definitely do some testing for mutations of your tumors. Wishing you all the best.