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May 16, 2014 at 6:37 pm #21973RussianGuest
was a previously level 3-A (after first diagnosed in November 2010), have taken path of ‘wait and see’ due to being level 3, with regular scans, and seeing dermatologists, with regular scans and check ups…..about year and a half ago have small melanoma appear above left hip (opposite side of original site which was right forearm………have successfully removed………..however due to this second occurance….. specialist — now has me at level lV…………Recently (appx. year later) … I had a scan and spot showed up from my right buttock…..took a biopsy…… Result unfortunately came back–Metastatic malignant melanoma. with following comment:
The neoplastic cell are HMB45 positive and S-100 negative by immunohistochemical stain. The immunohistochemical profile supports malignant melanoma.
I have an appointment with specialist late next week, any thoughts, or insights on report received?
ThanksMay 19, 2014 at 6:43 am #64391GillyParticipant
Sorry for your diagnosis – my husband had his first distant metastases on his left hip (sub cutaneous) having had his primary on the right side of his chest near the axilla – strange place to metastasize I thought – he also had mediastinal mets too – I would have thought with low tumour burden you would be ideal for Ipi/yervoy as it would give you time to try it and then use it as a failure criteria for Anti pd1 if it doesnt work for you – did they test your hip met or biopsy for the Braf mutation ? then you could have zelboraf or one of the Dab/Tram combinations – its awful to be stage 4 but you are in a relatively good place with no visceral mets and hopefully you can get on the new line of treatments before your melanoma spreads too far . All the best.May 19, 2014 at 7:52 pm #64392AnonymousGuest
Gilly, thanks for responding. …my first surgery was for a melanoma that occurred in Fall of 2010 and it was a 5.4mm Clark level 4 non-ulcerated melanoma—therefore, they listed me at the T4a M06 IIIa melanoma patient….Because I was a level IIIa I choose to take the ‘wait and see approach” since research lists no 100% proven therapy at this stage and to do regular scans …….just about a year ago, I had a second small bump show up located just above my left hip around waistline…….had it biopsied, and it was positive for melanoma
odd occurrence, as this located was on the opposite side of original site of first occurrence (right forearm)…….however, all was good….. had surgery with margins incised, and had regular scans every three months afterward………..after this last scan that was taken in early May, thus the neoplasticed cell at HMB45 positive and the S-100 occurrence……..of which I will be seeing my specialist this Friday.
Feel good, and nothing evident on body otherwise…..have received no treatments to date.
………..on your response you relate to the following of which I’m not familiar…..can you explain them a little further–ipi/yervoy, Brat metastic, zelborak, and dab/tram.
I hope this brings to picture from first diagnosis in Fall of 2010 until recent inquiry.
Russian.May 19, 2014 at 8:28 pm #64393Catherine PooleKeymaster
You might try looking here for answers to these therapy questions:
http://melanomainternational.org/melanoma-facts/melanoma-treatment-stage-ivMay 27, 2014 at 10:23 pm #64394AnonymousGuest Well I met with the Specialist, and since I’m now a patient with metastatic melanoma, and have a specific genetic mutation (known as BRAF)…..he is stating that I may qualify for a research study to evaluate treatment of it with two drugs given in sequence (one after the other).
The combination being studied would be: vemurafenib (also know as Zelboraf) and High Dose Interleukin-2 (abbreviated as HD IL-2, know as Proleukin.
Does anyone have any information, and or experiences with either, in order that it may assist me in considering a decision as to one treatment, or both (one after the other) in a future research study of which I may qualify?
Any pros/cons…..or things to consider in assisting with my decision.
Note: Originally, diagnosed with Stage IIIA melanoma of right forearm (Nov. 2010)….successfully removed and margins incised with taking ‘wait and see’ approach’… then reoccurring melanoma in small spot above right hip (of which was successfully surgically removed and incised margins surrounding it when removed-appx. Nov. 2013. Had recent scan in early May, and 2 spots showed, one concerning above right buttock……….biopsy taken, and result was positive-of which is my current position now in considering research options listed above.
I’m good heath, and taking no medications.May 27, 2014 at 11:32 pm #64395Catherine PooleKeymaster
This trial is perhaps controversial. You can get three BRAf drugs without being in a trial: Gsk’s braf/mek and Genentech’s Zelboraf. IL2 is very toxic and requires a hospital stay in the intensive care unit. To mix it with the braf agent is a new trial. I would recommend you mind try a less toxic route for your first treatment especially since you have a low burden of disease. Did he offer other trials? You should have choices. Where are going for treatment?
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