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June 17, 2013 at 12:39 pm #21378
Crazy..my story.. Woke up with a cough May 5 that progressed thru day and caused me to be short of breath. Thinking bronchitis, went to ER in early morning of May 6 and discovered a spot on lower lingular left lung, ct scan revealed center of chest had mass. Things progressed to finding out I have Stage IV melanoma. My local oncologist couldn’t find a point of entry, there is a suspicious place on my back, but its no longer cancerous…he referred me to UVA – Dr Weiss. I’ve seen him twice now and he’s recommending IL2 treatment to begin July 8. I am determined to beat this disease but am scared and feel like I need to ask more questions than I have…I’ve been reading this forum and its helped but right now I just am a little lost…I’m 55, single female, my only family is my younger brother who isn’t coping well and my bff who has been by my side from beginning. She and I are concerned that its been 2 months and I’m not starting treatment yet…IL2, read its intensive as Dr stated but he feels I can tolerate. I am healthy otherwise. Never been in hospital till May 6..I need support from those who are going thru this…Thank you so much!June 17, 2013 at 2:18 pm #61366 IL2 has a 6% response rate and is an older therapy. Since you are treatment naïve (not having previous treatment) you would qualify for some treatments and trials that have much higher response rates. One very interesting one we just posted about is the IPI/PD1 trial said to have 50% response or the PD1 alone, 38% response rate. Are you BRAF negative or positive? That test should be done immediately to determine that status of your tumor. That will open up other therapies for you. Craig Slingluff a surgical oncologist at UVA is doing a lot of the research trials and I would confer with him. See: http://www.medicine.virginia.edu/research/research-centers/cancer-center/cancer-research/membership/members/slingluff.html
The really great thing about the immunotherapies (IPI (yervoy) and Pd1) are the few toxicities associated with them and high response rates. Unfortunately as you’ve discovered, IL2 is highly toxic and requires a hospital stay. Feel free to call our helpline too 866-463-6663 tollfree.June 17, 2013 at 2:53 pm #61367
Thank you so much. I will confirm but I believe my local oncologist said I was braf negative. So not sure what options that leaves me. I plan to call Dr Weiss with further questions today, initially he thought I would be eligible for a clinical trial they were conducting there at UVA when we met on May 20, but last week’s visit he said the trial was closed and that we would “start” with this IL2. I don’t want to mess up from the beginning but I also want to get started on something so my healt doesn’t deteriorate. 1 ” tumor in left lung and mass size of lime in chest lymp nodes. PET Scan from a few weeks ago should cancer no where else. They have scheduled me for CT of chest-abdomen-pelvis & brain MRI one week prior to starting IL2 treatment.June 17, 2013 at 3:20 pm #61368 If their trial is closed, there are others nearby, such as Johns Hopkins or in the DC area. I will see what I can find for you. You can email me: email@example.comJune 17, 2013 at 3:31 pm #61369 Thanks so much. This is just so overwhelming but I am a command and control type person so I will be heavily involved and fighting all the way. I’m game to try anything once…June 17, 2013 at 5:59 pm #61370 Our mission/motto is you shouldn’t walk this path alone. And we are here to guide you the best we know how so you will be empowered as a patient and educated to deal with the doctors on their level. It gives you better sense of control and security.June 17, 2013 at 6:47 pm #61371BNP68Participant I couldn’t agree with Catherine more. There are just too many great trials out there right now to settle for IL2. IL2 does have some impressive results for the people in works for in that they seem to have a tremendous durable response but as Catherine noted it is extremely tough and a very low response rate. Would I try it? Yes, but only if nothing else was available and there certainly seems like there are better options. Having said that I have heard great things about Dr. Weiss.
Some of these trials may involve travel for you but if you are currently being seen at UVA Catherine mentioned some great options in the DC/Baltimore area that wouldn’t be too far. Not sure if you have any melanoma that possibly could be resected but if so you may even want to consider Dr. Rosenburg’s TIL trial at NCI. Catherine has a Webinar on here explaining about that trial. Good luck.
BrianJune 17, 2013 at 7:21 pm #61372LucyGParticipant
My story is similar, except I had melanoma in 1971 on my back, and it was removed with a skin graft and I was fine until March 2012. I had a lump above my right breast and it was found to be a melanoma, and that was removed, I had another in my lung, and then in my head. After all of these surgeries, melanoma got into my spleen. All of these surgeries were within 5 months in 2012. I did have radiation on my head about 2 months ago.
So, since Dec 2012, I have been working with Dr Weiss, and he is spectacular to work with. I have gone thru 26 IL2 treatments. I am 59 years old, and otherwise in good health. There are some other treatments, and if the IL2 is not working, I hope to try another treatment. Dr Weiss thinks the IL2 is working for me, I hope that it is. I have a couple months break, before I go back for blood tests at the end of July with Dr Weiss. I still have a power port that was put in back in December 2012, and that will stay in until Dr Weiss determines I do not need it. Good luck in your decision, and I hope you find something that works for you. It seems to be different for all of us. I am like you, I am fighting this disease with all that I have, it’s not fun, but am excited that I can talk about it now, and we have this forum, it’s very helpful.
SharonJune 17, 2013 at 8:32 pm #61373
Thanks everyone! This means a lot to me to have someone to talk to… I look forward to getting information and encouragement from those of you who are on this site. I am new to the whole deal…never been hospitalized my whole life until a month ago. Yep, that’s strange but good as most of my docs are saying, I have no health issues and never have had any…so I am one up. Response to BNP68 – yes I could drive to MD or DC, but it would be a haul for me. I’m already 2 hrs from UVA and don’t have a lot of folks who can travel or be with me. Lucy G – glad to hear you are pleased w/ the doc I haven’t gotten to know him well yet, he has come highly recommended as well as UVA, so we’ll see.June 18, 2013 at 12:03 pm #61374 Just wanted to add I wasn’t trying to criticize your current doctor, but wanted to point out some exciting new therapies we learned about recently at the ASCO (largest oncology meeting in the world)
the IPI/PD1 combo was showing 50% response with few adverse side effects and according to this link will be recruiting in Charlottesville soon:
Also, for others, this is an interesting site:
Ultimately, it is your decision, and I hope you have some support to go with you to discuss with your doctor. It is a tough time emotionally to process the overwhelming information. Also, you are unique being without prior therapy and therefore eligible for this trial.
There is the BSM PD1 trial and you may still get into it, call the UVA trial coordinator: 434-982-1902June 19, 2013 at 1:46 am #61375Sandalwood36Participant
God bless you Catherine for your compassion, knowledge, courage and willingness to help all! XoxoxoJune 20, 2013 at 6:19 am #61376buffcodyParticipant Your original discovery of the melanoma is very reminiscent of mine in May 2012. I had not the slightest hint of melanoma. I got yearly total body checkups from a dermatologist and kept my eye and my wife’s out carefully because of melanoma in other family members. I, too, found melanoma in my right lung thanks to a convenient bronchial infection for which I got an x-ray. It was confined to one 5 cm lesion on the lower lobe, and a lobectomy was performed. Has surgery been considered and ruled out as first intervention? Why? I did no systemic therapy as I was NED until October thanks to the removal. Next cancer found with two lesions to brain. At that time ipi was begun as standard of care and the tumors were radiated by SRS in December to maximize the interaction between the ipi and the radiation. I have had at least one additional lesion in my left buttock but am again NED as of mid-May. The radiated tumors give off no radiation on the PET scans to indicate there is any cancer present. In fact, one of the two has disappeared. My doctor is experienced in administering IL2 and considers it as many do if it works as still a great and long term “healer” for that small number of patients who respond fully. I know some of them personally for whom it has been the end of their worries. He also thinks the side effects, while very uncomfortable, are safer than many, even ipi, and can be managed in a hospital setting where those who administer it know what they are doing such as U. of M. There is a long and comprehensive book of how to deal with what comes up. As for me, at my age, 72, and even with fine performance status, it was not seriously considered as the next system. Anti-PD 1 will probably be next for me if I move back to systemic therapy. But, lucky me, that is not now, since I am NED, though I will admit that I saw for the first time in my life yesterday a skin lesion on my hand that looks a whole lot like the pictures of skin melanoma that I have never seen on my body before. I’m having it looked at Monday. All the best and it is great that you have such a good doctor, a top flight facility, and that you have found MIF. You’re moving in a good direction, and none of your choices looks like a bad one. Just tough!June 20, 2013 at 2:37 pm #61377CathyW46Participant I had a similar situation in the discovery of my melanoma. Coughing for months before xrays were done. Large mass in my right lung then lump on my sternum. It took over a year to actually get a correct diagnosis of melamona for me though as they could not find the origin. I went through a year of breast cancer treatment before it was discovered to actually be melamona stage lV. I then went through IL2. I had no problem with the treatment out side of really severe itching after but it did not work for me. Because I am Braf positive they tried some other things i won’t go into since it would not benefit you. None of them worked either. So two years after my cancer diagnosis I ended up at NIH in Bethesda, MD in a trial they are doing “randomized study of cell transfer therapy for metastatic melanoma using short term cultured tumor infiltrating lymphocytes plus Il2. I presented with a total of 10 tumors at that time. Three in my lungs and 7 in soft tissue in areas around my chest. They surgically removed the one on my chest that was now 2″ x 2 1/2” and had broken through my skin. they used it to do their thing and then I got the treatment. At the time I told them it was the worst thing I had ever agreed to in my life but today, just weeks past one year since the procedure I am so happy and full of life. My tumors got a 68% reduction in size, the one in my right lung which was pretty big is completely gone. The two tiny ones in my left lung have not changed in size in over a year. They think they might just be scar tissue now. I feel good except for some lingering muscle and nerve issues but I am on cloud 9! I would HIGHLY recommend you contact them to see if you fit into one of their trials. They do reimburse for travel expense if you have to go more than something like 50 miles. I did not pay ONE PENNY for my treatment nor did they ask for my insurance information. I truly feel they saved my life!June 21, 2013 at 1:54 am #61378 You are very fortunate to have a great response. Unfortunately, this treatment is only for a select few. But we wish you continued good health.July 4, 2013 at 2:55 pm #61379AndyTParticipant Dear Catherine,
what deos “treatment naive” precisely mean? If you were on zelnoraf and then quit, you are considere “treatment naive”? I am asking since some ipi/pd-1 trials’ eleigibility cirteria allows only “treatment naive”patients.
Also, where could we get information when a particular study site will start recruting (in the exmaple above)?
Thank you so much in advance! Hope your answers will also be helpfull to others:)
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