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  • in reply to: Update (All good) #70144

    Thanks for the update. Glad to hear things are going OK, you are still around to post the update, and we are all here to read it. Stories like yours gives hope to the newly-diagnosed.

    Less than five years ago, our options were much more limited and definitely less effective. You could have Chemo or Chemo or, if not that, you could have Chemo. In a very short period of time, we have some real options. While they don’t always give a long-time durable cure, they do extend life while maintaining a real quality of life.

    We need to be grateful for the new therapies like the Ipi/Nivo combo, Keytruda first-line treatment, Opdivo, Gamma Knife, and targeted SRS. We also need to be hopeful for newer trial therapies like TILs and other programs at the NIH.

    While we need to be strong for ourselves, we also need to recognize our contributions to the “next generation” of people diagnosed with melanoma. Others paved the way for us to be able to have these new therapies and our participation will enable the nextgen to have even better options.

    We are happy for you, MattR. Stay strong and keep the fight.

    in reply to: Complete Response #70002


    This is very good news to hear. Thank you for sharing.

    It is success stories like this that gives others hope. My father used to say that “cutting firewood provides you with warmth twice; once when you cut it and once when you burn it.” Your news is the same. It is great news for you and great news for another person who is just starting their journey.

    Best wishes…

    in reply to: TIL Trial – Adoptive Cell Therapy – ACT – LN-144 #69982

    Here is a link to the trial information.

    I will be participating via the Miami Beach location at Mount Sinai.

    in reply to: Update on Ipi/Nivo Combo #68019

    Hi Everyone,

    Once again, it has been a while since my last update. I think this will be my last post under this old thread as I think it is time to start a fresh one. However, I just wanted to keep all of my posts together for anyone who was going down a similar treatment plan. For me, it started with the Ipi/Nivo combo, followed by some SRS (Gamma Knife), followed by Nivo (Opdivo) maintenance doses, then followed by Keytruda. It now appears like I am going to get some more experience with SRS (Gamma Knife).

    For the last few months, everything has been good. I have been getting infusions of Keytruda every three weeks with only minor side effects. Fatigue and mild stomach discomfort are the primary issues, mixed with some nausea and irritability. I have established a consistent 3-week schedule which yields Week 1 being almost normal, Week 2 with some side effects, and Week 3 of recovery and a return to normalcy. All things considered, it is not so bad and could be much worse. I am doing the best I can with the situation I have been given. My wife and daughter have been great and provide me with all of the support I need.

    I have also been getting scans (brain MRI and chest/pelvis CTs) every three months. For the last year, everything has been stable with no new metastasis. What was still there was stable and nothing new has developed in both my brain and chest. That was until my scan last week on February 6th. The brain MRI results showed a new 3mm lesion in my right postcentral gyrus. This new occurrence is relatively small and should be able to be treated similarly to my previous lesions. As you might remember, I have already dealt with three lesions in my brain. One was removed via craniotomy in November 2015. This same site was further treated with one round of high-dose SRS Gamma Knife radiation. I then treated two other lesions in January 2016 with six rounds of low-dose SRS Gamma Knife radiation. I had only mild side effects to these procedures. It killed the lesions and they have since disappeared.

    I had an appointment yesterday in Miami with my primary oncologist (Dr. Lutzky) at Mount Sinai in Miami Beach. Today at 3pm, I will meet with my radiation oncologist (Dr Diamond) in Orlando. We will work together to develop a new treatment plan to pick up the fight again. My expectation is that they will recommend the following:

    – Treat the brain recurrence with Gamma Knife radiation, like they did with the previous lesions. This will probably happen next week or the week after that.

    – Continue with the Keytruda infusions. My next scheduled infusion is Feb 21st in Orlando.

    – Complete MRI scans monthly for the next three months.

    I will keep you posted as things move forward. It is all part of the fun. At least I am still here to enjoy it. I appreciate your support and send positive thoughts to you along your journey.


    in reply to: Recently diagnosed Stage 4 #69677


    I have been seeing Dr Lutzky at Mount Sinai in Miami for over three years. I highly recommend him and MSMC. He specializes solely in Melanoma.

    Good luck with your treatment plan.

    in reply to: NYTimes article on severe immunotherapy side-effects #69618

    Hi Sara,

    I just wanted to chime in about the adrenal insufficiency. I too still suffer from an adrenal insufficiency. And thyroid too. I take daily meds to help with both.

    in reply to: 15 keytruda infustions, no shrinkage just side-effects #69742

    Sorry to meet you here but you are in the right place.

    Just some ideas to discuss with your oncologist:

    – For fatigue and tiredness: Immunotherapy meds typically affect your thyroid and/or adrenal glands. I take meds for both. Levothyroxine 175mcg for thyroid and Hydrocortisone 20mg for adrenal function. Both have helped to improve

    – Other PD-1 options. If you are not getting any results from Keytruda, you might want to consider Opdivo. Also, maybe the newly-approved Yervoy/Opdivo combo. Just something to consider. I have taken all of them. I started with a PDL-1 trial combo. Then I did the Yervoy/Opdivo combo. Then just Opdivo. And now just Keytruda. As with all treatment plans that you develop with your oncologist, you need to have a plan A, plan B, plan C, and maybe even a plan D. As they say, plan the work and then work the plan.

    Good luck to you. You are among friends. I hope this helps.

    in reply to: Side Effects of Keytruda After 6 Treatments #69622

    Hi Mark,

    I have been taking Keytruda for more than six months now and am also located in FL. You can read my previous posts to read my experiences.

    In summary, I have experienced mostly:

    – slight fatigue, typically on day 5-10 after infusion date.

    – slight shortness of breath, probably from the pneumonitis. However, shortness of breath is still better than cancer tumors.

    For me, the Keytruda seems to be working so I just deal with the side effects. If you want to talk, just send me a private message.

    Best Regards,


    in reply to: Keytruda & Brain Issues #69432

    Hi Ann,

    Look at my previous posts for my history during the last 12 months. Lung and Brain lesions/tumors. One round of high-dose SRS and six rounds of low-dose SRS. Clinical Trial MEDI4736, Nivo(Opdivo), Ipimimulab(Yervoy), and now Pembro (Keytruda). As of my last scans, I still had one brain lesion and several in chest. And still here.

    Each person reacts differently to different treatment plans. For me, I think the Opdivo and Keytruda have had an effect on the brain mets. Definitely on the chest lesions. My last scans were in July 2016. I am scheduled for a new set on this Thursday. We should have more info about longer term effects and will happily share with you when I get the insight from our team.

    The primary goal for everyone on this site is long-term, durable solutions. However, if these cannot be attained, a short-term, temporary solution is our second choice. These 2nd choices buy us some time until we can find a long-term solution or a long-term solution can be found with research. You have to remain positive and keep hope.

    You and your husband are in our thoughts…

    in reply to: Abdominal Ills and Still on Opdivo #69548

    Hi Frank,

    Good to hear from you but sorry that you are still dealing with the stomach issues. As Catherine stated, it is a tough quality of life sometimes. You are still in my thoughts, as I enjoyed our time together in PA for the SFTS event. Hopefully, we will get another meeting together.

    I am still fighting the fight too. I am continuing with the immunotherapy, but switched from Opdivo to Keytruda (long story). I have my 3-month scans later this week. Fingers crossed for good news.

    Stay strong, my friend!

    in reply to: Yervoy…side effects? #69301

    How did your bloodwork turn out? Fatigue and nausea are common side effects with Yervoy. As Catherine said, don’t simply ignore your symptoms. Write them down and share them with your treatment team.

    – Review your thryroid function indicators. Sometimes it is related.

    – Schedule rest in your day. You are going through a lot right now. The goal is to get the best results from these treatments. It is not just a two-hour process for the infusion. It is a 2-3 week process for each infusion. Resting allows your body’s immune system to use all of its energy to fight. Also, it is important to get all four infusions (or as many as possible). Part of that process is resting, eating right, lots of fluids, and staying mentally strong.

    Our thoughts are with you…


    in reply to: Jonathon’s Story in the Washington Post today #69309


    I echo the comments made by many others.

    – Great article. Thank you for sharing your story so others can benefit from the learnings from your journey. I know I shared this with many friends and family, as it underscores some of the details that we go through on a daily basis.

    – You are an inspiration to me and many others. From Day 1 on MIF, I have gained knowledge, support, and guidance from your posts. Thank you. It is people like you who help to make this site a great resource for others.

    – Clinical trials and faster approvals are really the key to providing solutions. Many of the current Stage IV on this site actually started at Stage III. However, the Stage III group does not have access to many of the therapy options. But when it metastasizes and someone becomes Stage IV, it is sometimes too late. Hopefully, some of the new legislation and FDA process changes will yield some benefits to all stages.

    Sincere thanks,


    in reply to: Very interesting from our board member: SRS and immuno #69146

    Interesting to see this research info. There is a lot of discussion of the synergistic benefits of combining various therapies. It is good that someone is collecting and quantifying this data, even if it is not the primary goal of their research objectives. Because each treatment plan is different, it is difficult to quantify these combo therapies but there seems to be some trends appearing.

    I had a total of seven rounds of SRS in last year, with an Anti-PDL1 and an Anti-PD1 before and an anti-PD1 after. For me, it went like this:

    – 11 months of anti-PDL1 trial until Oct 2015 when it seemed to stop yielding benefits

    – In Oct 2015, changed to the anti-PD1 combo of Ipi/Nivo (Yervoy/Opdivo). I completed 2 combo infusions.

    – In Nov 2015, one high dose of SRS following a craniotomy to remove a hemorrhaging tumor in right lobe.

    – In Nov 2015, I had the 3rd combo infusion of Ipi/Nivo.

    – In Dec 2015, I had a total of six (6) rounds of SRS on two locations to hit two separate spots in left lobe and rear cerebellum.

    – In Jan 2016, I had the final and 4th combo infusion of Ipi/Nivo.

    – I have been taking the bi-weekly maintenance doses of Nivo ever since.

    As per my last update, 2 of the 3 lesions in my brain have disappeared completely. Also, 6 of 8 lesions in my chest have disappeared.

    in reply to: Update on Buff Cody #69163


    Sorry to hear about your latest issues. Since meeting you in person at the SFTS event in Philadelphia, I think about you often, especially when I pass the Swimming HOF in Fort Lauderdale.

    I hope you begin making some progress in a better direction soon and you get to dip your toes in the water this summer.

    My thoughts are with you.


    in reply to: UPDATES! We want to know how you are doing! #69210

    Hi Everyone…

    I just posted an update on my old thread but copy/pasted it here on this one. Sorry for the radio silence during the last few weeks but I felt the need to really focus on me for a while. It seems to have worked, as my latest results were very good. I just hope to continue to progress in this direction.

    (copied from other thread)

    I know it has been a while since my last update but I felt the need to take a self-imposed hiatus from everything, including MIF. Between health, work, and personal matters, I needed to focus a little more on my family and my health and a little less on other stuff. I cannot be thankful enough for all of the support and guidance provided by Catherine and the members of this forum group. As part of this group, I hope you understand my need for a brief separation. Everyone deals with things in their own way.

    I have been waiting to receive my latest results before I provided an update for the group. Well, I finally received my complete results last night. Overall, it is good news. However, like all news in my world, it is sprinkled with some interesting bits too.

    As a general summary, I feel very good. I am slowly feeling better, each day, as compared to the struggles from six months ago. Although tired after my infusions, my energy level returns after a few days. There are still the regular issues like pain management, lymphedema, and headaches, but nothing that is not manageable. There are also the newer and progressing issues of vitiligo and tinnitus which give me something novel to monitor. With each day, I am reminded to be truly grateful. I am still here, still alive, and still continuing to fight to do everything I can to hold off this disease.

    My blood work is almost all good. There are some slight issues with my liver function but this is nothing new. My ALT levels have continued to be slightly elevated for months but they appear stable at this elevated level. And although elevated, it is not high enough to discontinue my bi-weekly infusions of the Nivolumab (Opdivo) maintenance doses. Otherwise, my thyroid, LDH, and RBC levels are good.

    The MRI of my brain was really good. In summary, two of the three previous nodules (tumors) are completely gone. There is still one remaining nodule in my left lobe which previously measured 11mm, and then 3mm, and is currently 2mm. The ones in the right lobe and rear cerebellum seem to have disappeared. And to add just some drama and suspense, there is a “nonspecific increased flair signal in the right superior deep white matter” which is stable and consistent with the previous scan.

    The CTs of my chest and abdomen were also good. In summary, where there were eight measurable tumors on my lungs, there are now only two of them, measuring 12mm and 5mm respectively. My collapsed lung has completely healed, although there is some residual scarring which remains. My liver still has some fatty lesions but they have been stable for a long time.

    So overall, this is about as good as we could hope for. I am sending my most positive thoughts to everyone, whether you are fighting it yourself or supporting someone who is.

    Big smiles……


Viewing 15 posts - 1 through 15 (of 96 total)