› Forums › Cutaneous Melanoma Community › Hello Family! Update & Question!
- This topic has 15 replies, 11 voices, and was last updated 4 years, 6 months ago by
Ana Costa.
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- September 27, 2019 at 2:43 am
Hi ya’all, ok, scans are behind me and SURPRISINGLY results are in! I know right? The next day? The Angeles Clinic kicks glutious maximus! (aka- ASS! Haha) MRI of brain shows no evidence of disease just my normal Sinusitis thats been showing up like forever…My CT showed no new tumors yaaaay!!!!, i have the same ones from last scan at Kaiser back in May & June ( CT & PET) but, my now baseball size tumor( well, looks like one anyways!) on my left side (under ribs) is only measured at 4.5cm! (Roughly under 2inch) but, because of severe “Inflamation”, you all know that alone can make a small tumor look like a bigger tumor! Its baseball size outward! Oh! By the way, i had that tumor biopsied today, the Snaper type, Fine Aspiration…..But anyways, lung tumors about same size, grew a little, multiple prominent mediastinal and left axillary lymhnodes seen with rounded contour concerning for nodal metastasis. Left axillary lymphnode measures up 0.8cm and Right paratracheal lymphnode is 0.7cm, plus, a mild enlarged Hilar lymphnode measuring up to 1.3cm, plus, there are 2 subcentimeter nodules within the chest wall subcutaneous soft tissues at 0.8cm and a 0.5…..And my butt cheek (in muscle) one is basicly the same at 1.1cm….Then of course my severe clogging of my Aorta in abdominal area, i knew that…but! CT report reveals No bowel obstructiin!!?? Wth? Normal in Caliber! I wrote Dr. Hamid about it today after i came home to read these reports, has the Opdivo killed off my confirmed Sigmoid Mel mass?? Ill keep you posted!! Very wierd!and a right, Renal “cyst” is noted……thanks guys, gunna browse our board see the latest…live ya guys, TRUELLY…
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- September 27, 2019 at 12:43 pm
Your Sigmoid mel mass is gone? And your baseball-sized tumor is not really baseball-sized, but way smaller? Well that sure sounds like cause for celebration. 🙂Let’s hope that the clinical trial you’ll be in will zap the remaining problem areas.
I’m go glad you are seeing Dr Hamid and are at this new clinic where they have state-of-the art equipment.
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- September 27, 2019 at 3:03 pm
Thanks ya’all, im really REALLY trippin on the findings of my intestines!!!! What in the heck? Or what in the Heavens rather!!? My last colonoscopy (at Kaiser) confirmed Melanoma and as he (the Colon Dr.) Sized it, he eye balled it at about an inch and a half to 2 inch in size, CT & PET from Kaiser lit it up both times so, im trippin BIG TIME! i know immunal therapies can work their magic long after stopping its infusions but, this would be AMAZING if it killed it off!!!!??!! Now if i can only get my biopsied tumor on my side to quit leaking ill be happy, had that done yesterday morning for those who didnt catch my post, i slowed my Naproxen intake and ill call Dr. Faires (spelling?) the gent who did the work this morning about it…. -
- September 27, 2019 at 3:04 pm
Thanks ya’all, im really REALLY trippin on the findings of my intestines!!!! What in the heck? Or what in the Heavens rather!!? My last colonoscopy (at Kaiser) confirmed Melanoma and as he (the Colon Dr.) Sized it, he eye balled it at about an inch and a half to 2 inch in size, CT & PET from Kaiser lit it up both times so, im trippin BIG TIME! i know immunal therapies can work their magic long after stopping its infusions but, this would be AMAZING if it killed it off!!!!??!! Now if i can only get my biopsied tumor on my side to quit leaking ill be happy, had that done yesterday morning for those who didnt catch my post, i slowed my Naproxen intake and ill call Dr. Faires (spelling?) the gent who did the work this morning about it…. -
- September 27, 2019 at 3:08 pm
Hello Mike,
You’re further down a road which I seem to be traveling on, but I’m embarrassed to say you’ve got a much better attitude than I. I’m glad for your positive news and keep on truckin’.-
- September 27, 2019 at 9:12 pm
Aww your fine bro, ALL your posts seem positive as well! Ya have to be during bs like this, however, i may have had a head start on the happy go lucky (or unlucky at times) type attitude, my mom & dad told me i was very happy as a kid, a little to happy, even during punishment times! it almost scared my mom to the point i was gunna be serial killer when i got older haha…but i didnt, instead i inherited a Serial Killer, called Melanoma…
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- September 28, 2019 at 8:04 pm
Hi Mike
This looks like really good news that you seem to be reasonably stable. That’s a good starting position for your new trial so hoping it will turn this around for you and work even better. Looking forward to your future updates as I reckon I’m about 6 months behind you!!
Best wishes
Mark -
- September 29, 2019 at 6:29 pm
Scoob & Mark! Thank you thank you for the good vibes my way, its all a trip to say the least with my new team and clinic! Kaiser was good up to a point, my prior Oncologist Dr. Pakanati i hold dear bless her heart, when i first met her(2008) she told me right off the bat shes still learning Melanoma and its treatments but i told her so what! Between all her Collogues throughout the Kaiser system plus Data entry from Worldly Doctors on Melanoma, mefs, surgerys, protocol types etc. We will give my Melanoma a beat down & we tried! 3 topline therapies, Pembro, Ip & Nivo plus 7 surgerys later, im STILL ALIVE! But, she had to put the breaks on her help, she couldnt help me any further and halted my treatment, i get it, its not her fault those drugs didnt work as well on me as they should have!! But, thats when YOU ALL came in and helped me get Fired up to seek out Dr. Hamid! Its really nite & day there at The Angeles Clinic, i feel hopeful now….i start my trial Oct 8th!..-
- October 5, 2019 at 4:15 pm
It’s my first time here, but I have read many of your posts and comments and feel inspired by your optimism and thankful for the information you have generously shared. I am trying to get both – optimism and information. My mother-in-law has metastatic choroidal melanoma (primary tumour treated in 2009) and tried imunotherapy (Nivo). After 7 months, the doctor told her it sn’t working and reluctantly prescribed another type of imunotherapy last month, which apparently isn’t working (she found another node on her leg). I registered to find what treatments are being done to people with the same problem.
Good luck with the trial Oct 8th! Be brave!
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- September 30, 2019 at 8:57 am
I enjoy your posts. It’s really surprising to me to read the sizes and locations of your tumours. They’re almost exactly the same as mine. Did you have a primary? Did it start on your skin?-
- September 30, 2019 at 5:12 pm
Hi “T”! Can i call you T? A little easier for me, yes, iv actually to this day, have had “2” Primarys, a first original, at diagnosis primary in 2008 to a mole on left leg that went out of control, grew wide, dark then “out” of the skin like a wart (lesion) then, fast foward to 2017, almost same situation, on left shin, but not a mole but solid tumor grew out of my skin, like a wart, a crusty ol’ lesion, biopsied, confirmed Melanoma BUT! Not DNA related to the past 5 lesions/tumors that popped up since 2008, another words, my “2nd” Primary….crazy life of a Melanoma warrior!
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