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Best of luck tomorrow. I had SRS on June 7th and I really feel fine physically. I was just a bit cranky from the Kepra and prednisone that they gave meduring the pre/post procedure, but that passed pretty quickly
The tough part for me has been waiting for the time to pass so that I can have another brain scan and hopefully begins my clinical trial, that was backburnered by that one unexpected brain met.
We all look forward to hearing about your own experience real soon.
My SRS treatment was postponed from yesterday to today. I was in to DF/BWH @ 7:30 and home by 10 am. Completely invasive. Slept for about 4 hours and taking it easy now. The worst for me has been the Kepra over the past several days as it makes me tired and a bit irritable. Today was first day of dexamethasone and that is low dose for a few more days. A+ so far to my radiology team. New MRI in 6 weeks+- Wow, as I am just getting into my car to drive to DF/BWH for SRS of my one brain met, I would really like to believe this, but find it somewhat incredulous as i sincerely doubt that any melanoma specialist at DF would make such a statement until/unless such a clinical study were actually announced. Believe it when it is announced, until then it is just something that we all wish would take place soon. What a great False Positive happy day for you! Frank.
Best of luck with today’s brain MRI. No doubt that the mind trips do almost as much a job on us as do the physical ones. Waiting for a course of action can be so difficult. As I read your story, I give you my best for hanging in there so solidly through all of these ups and downs.Angela21 wrote:
Thank you! Would be great if brain mets were allowed, too.
We have to believe that day is coming.
I met with the BWH/DF radiology team today and my SRS treatment is now scheduled for next Thursday. Mask was made today and measurements taken. All of these health professionals at Dana Farber & Brigham & Womens Hospital certainly make me feel that I am very lucky to be located in Boston area.May 29, 2013 at 9:07 pm in reply to: How long have you been Stage IV? How old are you? More ?s #59773 :When were YOU diagnosed with melanoma the first time? May, 2008 – mole on my left forearm :How much time passed until you were Stage IV? 5 Years. Now have mets in lungs, abdomen & spleen and new 6 mm in right Occipital lobe of brain :What kind of treatments have you had? wide excision of left forearm and radical left axillary lymphadenectomy 5 years ago. I was supposed to begin BMS Phase 2 Yervoy/Nivolumab sequential combo trial yesterday, but my latest brain MRI shows a 6mm met in brain, so SRS will most likely take place next week with trial hopefully beginning in 6 weeks if all is clear :How long have you been at Stage IV? 2 months . :How old are you? 64 Maria
Dealing with melanoma is difficult enough, and investigating and facing some rather tough choices with brain mets is even more frightening. Having the best medical team in place should allow you to be able to make the most educated decision possible for what is best for your individual situation. And, no doubt, while each of us can learn from each others histories, each one of us has just a little bit different something going on. I know that you will be able to take the steps for the best treatment for you and I wish you the best in doing so. On a personal note I am extremely interested in hearing more about your decision and treatment as I am just now embarking on a similar path of investigation and treatment options for a 6 mm brain met. No doubt, on this forum, we are never alone and it is great how others reach out and touch each other by sharing experiences.
Well, I had a great big curveball thrown my way late today. I had all of my scans redone yesterday but I was just informed that yesterdays redo of my brain MRI showed a new 6mm met that was not there 45 days ago. Looks like the BMS Phase 2 trial will not be starting for me on Tuesday. I am still in shock and will not really know what the new plan might be until next week. New Doctor appointments & Probably SRS. And then who knows? I am finding out the hard way that it is best to always have a backup plan here. That is great news rbruce. Hope it keeps going in that direction. I signed a tree’s worth of paper consent forms @ DF on Tuesday for the BMS Phase 2 Nivolumab Given Sequentially With Ipilimumab trial (I think that I will just call this the N&Y (Nivolumab & Yervoy) Combo Trial) Tissue biopsies of some abdominal mets was Wednesday. Now, I have to redo all my scans on the 23rd as they are just older than the 28 day trial requirement, and first treatment is tentatively scheduled for the 28th. Feeling a bit better emotionally at this particular moment now that treatment & schedule is concrete.May 17, 2013 at 12:28 pm in reply to: Yes!! Bristol melanoma drug combo marks new advance in immun #60733kylez wrote:
Stan, just saw another BMS anti-PD1 combo trial, with anti-KIR, apparently at three Boston locations including DF.
If you ask Dr. Hodi about this one, would be interested what he says, and/or if they’re recruiting yet.
Kyle, I would not qualify for this one as it requires one previous regimen. But when I see him next, I will try to get some info.
With the still unknown start date of the solo Merck PD-1 trial @ DF (could be 1 week or 4 weeks or ?) I am hoping to get into the BMS Phase 2 combo Yervoy/anti- PD-1 Trial as my overall health is good and I am opting for immediate treatment. Met with my surgeon yesterday to figure out the Trial’s 3 biopsy requirement issues. Trying to deal with both the disease and the process once again.