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August 26, 2016 at 2:45 pm #69239AnonymousGuest
Great point about the PET scans Matt, especially if there is a previous one for comparison.
JeffSeptember 10, 2016 at 1:10 pm #69240
THis past week was definitely a downer. ALthough I was premeditated, I had an allergic reaction to the Gadavist MRI Contrast. Then, on Wednesday, while preparing for a conference call at work, I suffered a seizure. Luckily my RR GM called 911 and my wife. Next thing I knew, I had been transported from Grafton to BWH in Boston. Hopefully this was an isolated incident as I am now on anti-seizure meds. Unfortunately my start on ERK has been postponed, so I will not know what my treatment(s) are going to be going forward until late next week at the earliest. At least I feel back to normal today.September 10, 2016 at 6:18 pm #69241 Oh that must have been an awful feeling for you. I am glad you are feeling better though. Please keep us informed how you are doing and when you get to start the trial. Go Stan!September 11, 2016 at 7:17 pm #69242gvesenkaParticipant Hi Stan, I’m so sorry about this “bump in the road”. Really sucks. I’m glad you’re feeling better though and that you get started on ERK as soon as possible.
GwenSeptember 15, 2016 at 5:52 pm #69243buffcodyParticipant
Things have been dicey since the last time I posted a month or more ago, but the future is at least for now looking clearer for an update about now and what’s coming. I started a combo ipi/novo treatment regime in late May after a two month or so bout with stomach pains and blood test and “regularity” craziness that led to a diagnosis of acute pancreatitis and liver disease. An attempt was made to introduce a plastic stent to clear my liver which was blocked, but it was unsuccessful because the intestinal metastasis I have had gotten in the way. Eventually in June, I was operated on to implant a biliary tube along with an attached “bile bag” to collect what came out. I was strictly “on the bag” for 6 weeks until I was able to cap the tube externally and allow for internal flow, still without a stent. When this apparatus was installed I was told that my days of immersion in water were at an end, a loss to one whose major hobby for the past 10 years or so has been competitive age group swimming.
All told I was an inpatient 4 times in June and July for a total of 15 days dealing with various issues such as above and an extremely low blood sodium level. I’m still having to have weekly tests for sodium, potassium, liver and pancreas related blood values and make various lifestyle adjustments accordingly. But the longer range picture is starting to emerge. After one infusion episode with both Ipi and Opdivo, I have been strictly on Opdivo and have been well enough to adhere to the biweekly schedule most of the time since May. Side effects have not been bad, some pituitary involvement, which may also relate to the fatigue effect, but besides that and frequent pain episodes probably related to the stomach tubing, the only one to note is itching over pretty much my entire body. But that does wax and wane and does not seem to affect my sleeping thanks to a lot of lotion and cream.
The “longer range” is that I am scheduled to continue Opdivo infusions through the end of the year. Maybe quite a bit longer. Unknown for now. The tumor, which started out measuring 2.3 by 2.3 centimeters on the CT scan has gone down in 3 months to 2.0 by 2.0. My oncologist is optimistic that this shrinking will continue and my LDH count is the lowest it has been (137) since beginning my melanoma contest. Before the end of the year it is expected that a plastic stent will be implanted so that my hose can be removed and that with the closing up of the external wound that I will be able to swim again. Next stop on the medical team’s current calendar for me is to have me get myself in the best physical shape possible to remove the Last of Mohicans abdominal tumor that would make me not only NED but which they believe could very well be curative. The only metastasis that has appeared over the last 3 plus years except for this one was one that was removed in the spring of 2013 by surgery from my left buttocks. Sub-dermal. I’m not sure yet and am postponing doing anything more than preliminary research about having the operation, which would involve the scary Whipple procedure. My primary care physician, having treated a number of patients throughout his career who had Whipples, is not too friendly to the idea in my case. The decision is in my hands, of course, and it would be good to have it as a real life option next year as it would mean that things have really improved. If anyone has had the operation, I would be interested in your input on how things went/are going for you. I would also be wanting to talk to an expert in the procedure from outside the University of Michigan before deciding if and where. The surgeon I have consulted at U. of M. after initial hesitation, after he came to know me and my case better, is quite optimistic not only on my ability to handle it but on the potential for cure at the end of this trail.
So that’s how I am doing and doing better because my appetite is back to almost normal, thanks in some part to going back on daily dosages of cortisone and the relief of stomach pain. I’m also back to a couple of workouts a week on the treadmill and with my physical trainer from my swimming days. She knows what she is doing, and I don’t need physical therapy with where things are. My balance is as good as it has been in a few years, which is a very good sign, and aerobically I’m seeing signs of improvement every week in speed and distance on the treadmill. Thanks for your always support!September 15, 2016 at 7:27 pm #69244
Frank you are truly amazing. Your spirit and stamina are just fabulous! Keep up the good work on the treadmill (you know they have found this helps patients with dementia and parkinsons too) and I’m a big believer in physical stamina. I am sorry about the swimming. I had to give up running a few years back and I just loved it. But my knees didn’t. Take good care and thanks for the update!September 15, 2016 at 7:28 pm #69245MathewRParticipant Frank, sounds like a challenging summer. Glad to hear that you’re doing well. For what it’s worth, my wife’s uncle recently had the Whipple procedure and is doing well. He has pancreatic cancer and is in this mid-50s. Post-surgery, he was in the hospital for 2 weeks or so due to some post-surgical issues.September 17, 2016 at 2:42 pm #69246 Mary Sue is also having a rough time. She had some issues posting but has been in the hospital ICU but now out. Between infection and potential pneumonitis she may have to discontinue the PD1. Please keep her in your thoughts and prayers. She’s a trooper and knows so much too!September 19, 2016 at 5:41 pm #69247 Some of you are having difficult times with difficult choices and Iencourage you all to continue to persevere through it all.
I started the ERK last Thursday with a difficult 12 hour initial day. It took me until Sunday to gather my strength and wits to keep moving forward. My body is getting used to the new treatments and I am beginning to feel better.September 27, 2016 at 3:11 pm #69248msue5Participant
Had trouble posting but lots going on. I went to our house in SC an 8 hr drive 2 days after my last Nivo dose. My husband was not able to take time off so I went by myself. The day after I arrived I started running a high fever103 but no other symptoms except body aches and headache from fevers. I slept the whole time. The fevers would come and go and I figured it was the Nivo. I had been running low grade fevers on and off for months and also blamed on Nivo or the many autoimmune diseases I have been diagnosed with recently. After about 5 days I realized I wouldn’t be able to drive home and my husband had to rent a car and come get me. I had already talked to Onc and arranged an appt the day after getting home. They did infectious disease work up and discovered pneumonia so I started Levaquin and things seemed to improve but after3 days fevers came back and I was starting to collapse at times. Onc out of town so off to ER. I was diagnosed with pneumonia vs Pneumonitis. My fever was high and I had very low BP 70/30. Admitted to ICU and got tons of fluids, 3 different antibiotics. Still no cough, no shortness of breath just so weak. They did a TSH and it was high so ACTH was done and I was diagnosed with Adrenal crisis and Complete Adrenal failure. I had an appt at Johns Hopkins for an Endo consult so I was disappointed because the local Endo just dismissed everything. But I knew something was wrong for a long time. The local Endo wasn’t accepting new pts but my Onc pulled strings and got me in and tests were repeated after discharge. I think I have been in adrenal failure for a long time. My other issue is my CT of chest showed Pneumonitis in addition to pneumonia. My Onc wanted a Bronchoscopy done be caused they also found atypical nodules scattered around. The Pulmonologist said unnecessary because everyone who has pneumonia has Pneumonitis and it wouldn’t affect treatment. Onc said ok you are going to someone new. Now new Pulmonologist is arranging Bronchoscopy. We may have missed the boat on the Pneumonitis because I had already been taking steroids and it could have improved even if it was Nivo related. Both my Onc and Melanoma Specialist agree. If nodules neg and Pneumonitis cleared I will restart Nivo and if it returns I need another plan possibly TVEC or BRAF. Still on Prednisone and Hydrocortisone and I feel improvement already from Hydrocortisone. My muscle weakness is better and feeling stronger. Long post but I’m wondering how anyone feels about my plan of action. Am I crazy to continue Immunotherapy. I don’t want to use up my back up plan now. The adrenal failure is the likely cause of my inability to gain or maintain weight so looking forward to getting back to normal weight. Did anybody have weight loss with adrenal failure and regain weight?
Mary SueSeptember 30, 2016 at 9:09 pm #69249jmmmParticipant
I don’t keep up with the forum as much as previously, but that is because of excellent results. So here is the scoop:
Diagnosed in January 2011 with Stage IV and after several early resection surgeries (small bowel and lung) completed Yervoy infusions. Shortly after what appeared to be progression I began Zelboraf (Braf) treatment following a crainotomy and gamma knife. This month will mark 5 years on Zelboraf (just behind DickK !). Scans have been NED for the last 3.5+/- years.
Still taking Zelboraf since side effects are manageable, but considering drug holidays …
Cathrine, Thanks so much for this forum and all that you do for the community of melanoma patients and caregivers – it is such a blessing.February 2, 2017 at 6:17 pm #69250
After a few unsuccessful forays into the difficult world of Phase 1 clinical trials and a 6 week washout respite from all treatments , where I felt like a human being for the first time in many years; my latest scans showed fairly major progression in my lungs along with some minor progression in my abdomen. After discussing this turn of events with Dr. Hodi and his team, We decided that I needed to back on the poison, or my life might be cut short. So, today I started a Venurafenib/Cobimeenib combo approach. I will report back as to how I tolerate these drugs.February 2, 2017 at 11:29 pm #69251 So good to hear from you Stan. Sorry to hear of your progression. I hope you have an easier time with these drugs. You might try doing advance meds to mitigate the fevers, etc. to make it more tolerable. Again, so sorry, but hope this kicks out the melanoma for you.February 3, 2017 at 5:05 pm #69252gvesenkaParticipant Stan, I’m sorry the ERK trial didn’t work for you. My tumors showed progression on that drug also. Two months ago I started another Phase 1 trial using Braf/Mek plus an infusion of an antibody against the protein hsp90 (not sure if it’s an antibody). My LDH levels have been slowly increasing so we scheduled the CT scans early and actually saw shrinkage in my large abdominal tumor! We’re hoping the LDH levels are due to what looks like necrosis in a spot on my liver. While I’m thrilled with these results, the side effects are the worst I’ve experienced – diarrhea, nausea, vomiting, weakness and fatigue for many days after the infusion. Next week is a week off (3 weeks infusion followed by 1 week off) and I’m looking forward to feeling fairly normal. Thanks for posting.
GwenFebruary 4, 2017 at 1:17 pm #69253
Thanks for the update. This will be helpful to others considering these new agents and trials. I also hope your side effects lessen. Are they giving you antiemetics? There are a variety of drugs that can mitigate nausea. Keep in touch. Wishing you the best outcome.
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