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January 15, 2014 at 10:46 pm #63068
Thank you for your response. Your posts about your experience were very helpful to us in knowing this trial is at Nashville and what to expect. Steve is starting on a 2.4mg/kg dose as that is the expanded phase 1 dose. As you know it will be weekly visits for quite a while, but it seems he will be on the same three week infusion schedule as you. I realize he was fortunate to get in and am also surprised that it is almost closed.
LindaJanuary 17, 2014 at 2:27 am #63069BNP68Participant
So happy to hear Steve got into this trial. Best of luck to you two. Hopefully you can update us on how the trial goes for you. As you probably know Johnathan is the most popular poster on this site with his updates. I think it is a fascinating trial and one that I try to keep close tabs on in the event my current treatment stops working.
BrianJanuary 24, 2014 at 1:47 pm #63070
Yesterday Steve had his first scan 9 days after the first ADC infusion. It’s done this soon just because of the trial data requirements. We were surprised to find out that there was notable decrease in the tumor sizes, or stability in all of them. We also think that the ipi taken earlier may be kicking in for some impact, but overall this is great. It’s the first positive news since he went to Stage IIIC about 7 months ago. We are still planning the next step in case we need it, but now hoping this works for a while.
Symptoms after the first infusion were mostly mild. After the second day he had some mild flu symptoms for a couple of days, then he felt fine. A few hours after the infusion (this seems like a strange symptom) he had intermittent hiccups for about 24 hours. We were told it’s possible this could be from the steroids taken with the infusion. Will have to see if that repeats.
LindaJanuary 25, 2014 at 12:47 am #63071BNP68Participant
So happy for you and Steve. To see results at 9 days certainly gives one hope for a longterm benefit. Thanks for posting your uplifting news.
BrianFebruary 1, 2014 at 9:53 pm #63072
Side effect update for ADC trial: This week Steve’s blood work showed continued decrease in white cell counts, low enough that he was given a prescription for antibiotics. He is also experiencing significant hair loss. He also feels achy with a cold, which I hope is a separate thing and not related to treatment.
The next infusion is Tuesday so we will how the low (really low) white cell count is treated.
He has continued to see (feel) decreases in subcutaneous nodules, and no new ones. Prior to treatment there were new ones almost every day. Again, some of it may be the prior ipi delayed effect, but still so glad and thankful to see some significant response from this treatment.
LindaFebruary 11, 2014 at 2:24 pm #63073
An update on the ADC side effects: Steve had his second infusion last Tuesday Feb. 4. His WBC count had risen enough to be over the required limit. Of course it is starting at a much lower point than prior to his last (first) infusion so it will have to be watched this cycle. Some mild flu-like side effects began on Thursday, plus some nausea and GI issues and fatigue. Those lasted from Thursday through Sunday. These were similar to the side effects from the first infusion, but probably a little more pronounced. He also on Sunday began noticing some tingling and slight numbness in his fingertips. Hair loss continues, and is mostly gone by now – time for a buzz cut. The next scan is next week, and of course we are hopeful we will see continued tumor reduction.
LindaFebruary 19, 2014 at 5:21 am #63074
My husband Vince has just been diagnosed with stage IV mucosal melanoma of the maxillary sinus. He is 57 years old and this all started with a nosebleed around Thanksgiving that wouldn’t stop. He had no other symptoms until January when he started feeling congested and the nose bleeds got worse and has had a few headaches and some sinus pressure. His PET scan revealed a metastatic lesion in the T6 area of the spine also. The sinus tumor has invaded the right maxillary antrum and nasal pathway,pterygoid plates, anterior wall of maxillary antrum,soft tissues of the cheek deep into the musculature of the face. Extension into the infratemporal fossa, posterior ethmoid air space, nasopharangeal area, destruction of the alveolar process of the maxilla and the right orbit. Much more on the CT scan. He is scheduled for endoscopic surgery to debulk the tumor on Friday Feb 21st as well as MRI of the brain and thoracic spine. We were told that the tumor was too advanced for the radical surgery that would be needed to possibly remove the entire tumor. He also had a 2nd biopsy today to test for BRAF, NRAS and C Kit mutations. We are scheduled to see a radiology oncologist tomorrow for radiation treatment of the sinus tumor and spine tumor and they want to start him on Yervoy next week while we are awaiting the results of the pathology. I am beside myself and overwhelmed with this information and don’t know what is right or which way to turn. What is best for him or where to go. He is being seen at Jefferson HOspital in Philadelphia which is a very good hospital but the rarity of this cancer has me concerned that this is not enough. There is a specialist at the University of Pennsylvania who has some experience with mucosal melanoma as well as Sloan Kettering in New York. I don’t know which way to go from here and don’t want to make a wrong decision for my husband. He still does not comprehend the magnitude of this diagnosis. ???????????February 19, 2014 at 10:42 am #63075MathewRParticipant Linda, I’m sorry to hear about your situation. My suggestion would be to start a new thread here and on the Melanoma Research Foundation forum requesting suggestions for top mucosal melanoma specialists. I also live in Philadelphia, but have cutaneous stage IV melanoma. At the urging of friends and family, shortly after my stage IV diagnosis, I moved my care from Jeff to Dr. Schuchter at UPenn–and I haven’t looked back (though I’m sure that many patients are very satisfied with Jeff). That said, mucosal is a different animal and might warrant treatment at Sloan or elsewhere. Go with your gut and get with a top mucosal specialist–even if not local.February 19, 2014 at 1:12 pm #63076Catherine PooleKeymaster Mucosal melanoma behaves much like cutaneous melanoma once it becomes metastatic. Therefore, a good overall melanoma specialist is important. There is an excellent team at Sloan and they do evaluate you as a team. Mucosal does not have the BRAF mutation, but can have the CKIT mutation. I would inquire about that although the therapies have not panned out that well. I have heard that the immunotherapies work well for mucosal and would look for those trials if you can find them. Right now they are rare. PDL which works like PD1 is another option with some openings. I’m trying to find out if the PD1 by Genentech is accruing at Sarah Cannon too. Sarah Cannon has an excellent reputation with many trials. I would be happy to speak with you personally to try an guide you through this stressful time. Our helpline for the Philadelphia area is: 610-942-3432, anytime. We are here to help!February 20, 2014 at 10:30 pm #63077 I was also given the name of Lynn Schuchter at UPenn and we actually had an appt for tomorrow that I had to cancel and reschedule because the surgeon dr Marc Rosen at Jefferson felt that local control was urgent at this point for my husband because of the size and the location of the growth around his orbit and because my husband’s symptoms are progressing rapidly. He is going to debulk the tumor via endoscopic surgery and possible Caldwell luc. He did say that based on the stage of my husbands tumor that he was not a good candidate for the more radical surgery. They also want to do SBRT on the T6 lesion for the same reason. The surgeon did say we could and should get another opinion once these immediate issues were addressed and my husband likes the doctors at Jeffrson so far. Once surgery is done I was planning to reschedule the appt with dr schuchter if my husband is agreeable to this. He is seeing Dr Kendra Feeney who is a specialist in melanoma and she mentioned many of the things I have read here and on other forums and also stated that she would be checking Sloan for clinical trials once we get the pathology back on the mutations. He is also seeing radiology oncologist Dr Wenyin Shi would said since there was only one lesion on the spine and it was oligliometastatic that this SBRT treatment may help with local control. He did say that mucosal melanoma is radioresistant though I will call you Caitlyn hopefully soon after surgery.February 20, 2014 at 10:48 pm #63078MathewRParticipant Linda, it sounds like you have a good plan. Given that you’ll be seeking one or more other consultations, make sure to get copies of everything, including CDs of scans.February 21, 2014 at 3:39 pm #63079AnonymousGuest Linda:
So sorry to hear of your husbands diagnosis. It must have hit you guys like a truck.
My wife’s melanoma started in the left maxillary sinus as well, with the intial symptom being a slight nose bleed if she bent over. It progressed over a few months to pain in the area and was treated at first as an infection with antibiotics until a CAT scan revealed the sinus was full. Direct examination found the tumor and there was subsequent complete surgical resection with margins followed by a radiation “clean-up”. About 3 months later a PET follow up showed it had spread to her lungs and several vertebrae in the spine (which was successfully treated with radiation).
Despite the genetic differences of the tumors, the spread of her disease was just like that of skin melanoma, eventually moving to the liver, paratenial membrane, and brain along with some skin nodules. Her disease was Braf negative (like most mucosals) as well as Kit negative, NRAS was not tested
At the time, a few years ago, there was a large derth of trials available for melanoma so we were stuck with a cisplatin/vinblastin/temodar based chemo and later IPI. Her disease was radio-sensitive, working very well at “sharp shooting” the mets in her bones, brain and a later reoccurrance in her sinus.
We were enrolled into a MSK trial which sequenced PD-1 four to twelve weeks after IPI but was excluded at the last moment due to brain mets.
I would really check with MSK and/or BMS to see if there are any slots still open for the PD-1/IPI combination trial as the early data was very encouraging. PDL and ADC also look promising. There is also TIL at the NCI but it is a grueling procedure, though the results can be very promissing. This means you need to get plugged into a team that can be very aggressive in finding and advocating trials for you. Catherine also devotes considerable and tireless energy in the search for trials.
Also, please visit the caregivers forum early and often. You don’t have the disease but it also hit you like a ton of bricks as well and you DO have symptpoms because of it. This is an extremely stressful time you too (DUH!) and you absolutely need to care for yourself as well. There is plenty of support in the caregivers section so take a dip in that pool early and often. It’s a great source to validate the feelings you’re going through. Also, don’t be shy about seeking professional counseling and reaching out to friends.
JeffFebruary 25, 2014 at 1:44 am #63080
Thank you Jeff for replying. First I would like to ask how your wife is doing? My husband just had surgery on Friday to debulk the tumor. Because of the mets to the spine they took the radical surgery off the table. They did say they removed 95% of the tumor but did not get clean margins. There was invasion if the orbit, deep muscle of the cheek and soft tissues as well as nasopharynx and the spine. We are scheduled Weds to be fitted for body form for SBRT of the spine. They didn’t want to discuss the sinus and facial treatment until the surgery was over and the radiologist met with the surgeon. We will hopefully find out Weds. They did talk about radiation treatment to the face for 4 weeks 5 days a week but also said it was a sensitive area and large area and this cancer is not always receptive to radiation. We also tried to get an appointment with Dr Lynn Schuchter at UPenn and are awaiting a call back as her schedule was booked for a few weeks. We had one Friday but the surgery was of urgent nature because of symptoms and we had to cacel. I hope I don’t regret that decision. The melanoma specialist at Jefferson did mention starting Yervoy while we are awaiting the pathology for mutations. I hope that won’t hurt his chances for a more promising clinical trial. I don’t know enough about this but time does seen to be of the essence. I am not sure how to find the caregivers forum yet but when I get free time I will. I also want to speak to Caitlyn Poole and hope to find that time this week. I am still scrambling to make arrangements for my business. I work by myself and have no employees. Needless to say I am overwhelmed. My daughter is also in college and feeling the pressure too .February 26, 2014 at 3:15 pm #63081AnonymousGuest Linda:
You’re quite welcome. I’m glad to offer support.
Actually my wife died a year and a half ago yesterday from treatment related complications ( a last ditch aggressive chemo which damaged her kidneys) but thanks for asking. I know exactly what you and your family are going through.
There are sooo many more trial options available now (PD1, PDL, ADC, MEK and some other developing stuff) than when my wife was first sick. IMO, getting into a clinical trial would be a first priority as IPI takes time as does TIL and some of the newer stuff in trial seems to work quicker. Also, some prior treatments, like IPI, can be a trial exclusion or cause a lengthy delay in trial entry. Please contact MSK and BMS directly to see if they have slots now or coming out for IPI + PD1. Also the PDL trials may hold similar promise as the PD1.
From what I can tell, your husband is early in his disease (low tumor load and spread)and treatment naive. Being treatment naive can open him up to a lot of trials. Has he had a brain MRI yet? Where do you live?
JeffMarch 15, 2014 at 3:59 am #63082
Thank you Jeff and I am sorry to hear about your wife. These past few weeks have been a whirlwind. My husband just had his first treatment of Yervoy and will start radiation treatments on his sinus on Monday March 17, 2014. We did get in to see Dr. Schuchter at UPenn and she concurred with the doctors at Jefferson on his plan of treatment. Since he was already scheduled to start the Yervoy at Jefferson and the insurance paperwork for Yervoy was complete and in place, he did not want to delay treatment and he felt very confident with the doctors at Jefferson, Dr. Kendra Feeney (melanoma specialist) and Dr. Shi (radiation oncologist), so we decided to stay with Jefferson at the present time. Both doctors said that he was not eligible for any clinical trials at this time and that Yervoy is the treatment of choice for him to start. HIs Braf, NRAS, C-Kit all came back negative. There was a sub clonal mutation at the L597Q which may have some significance in the Braf mutation and therapies. There was also EGFR (V765T) mutation, HGF amplification, PTEN loss, CDKN2A/B loss, TP53 (V216L) mutation, SPEN rearrangement , exon 11, and KDM5A amplification. ??????????? I did mention to both of the Drs. at UPenn and Jefferson, the Anti PD1 trials and the new program that just came out on Monday March 10, for compassionate care use (expanded access program) which I found out about through a friend that works at Merck with the MK-3475 drug and they both stated that this would only be used if he was IPI naïve or if IPI did not work. He was IPI naïve on Tuesday but we didn’t get this info until today so I guess now we have to wait and see what happens with the Yervoy. My only concern is the difficulty we have had in getting his medical records promptly from Jefferson and the difficulty in getting in touch with the doctors. Since we are new to this I am not sure what is an appropriate wait time for these things or what to expect. I ended up paying $50 to fax his mutations report to UPenn because after many calls to Jefferson, the UPenn specialist never received them in time for our office visit after they assured me that they would. So we went to UPenn and could not discuss all the details because of the lack of mutation records. I cant help but wonder if the treatment suggestions would have been different if they had those records for our visit instead of after. I also had to wait 8 hours today for the Jefferson physician to get back to me with regard to what may have been a side effect from the Yervoy infusion. I called there 3 times before I finally got a phone call back. I know he is not their only patient but he is my only husband. Also, HIs LDH level was slightly elevated on the labwork done 2 days before Yervoy infusion and dr did say she would have to keep eye on it and he may need to be rescanned earlier if it increases any further. I would just think that given the rarity and aggressiveness of mucosal melanoma of the maxillary sinus and the metastases to the T6 spine, that time would be of the essence in treatment and decisions and I am not getting this impression from either UPenn or Jefferson.
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