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July 17, 2016 at 2:07 pm #69209
I somehow missed your post, but I think of Pati often and dedicated my book to her. She is in my heart still and we had some wonderful times together despite living an ocean apart. I think her boys are fine and I’m in touch with her husband on occasion. He has a heavy burden. Thank you for your good wishes to me and my partner, he is unfortunately progressing and is no longer the person I once knew. It is plain sad, but it is reality. So I try to live in the moment, and when he comes out with a bit of humor or sarcasm, I relish it! Your story is awesome Candi.July 18, 2016 at 3:30 pm #69210goldfidlerParticipant
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.
MattJuly 18, 2016 at 4:33 pm #69211JoshfParticipant
So quick post. I had tumor biopsy at MDA and leukaphresis to get into one of the adoptive cell therapies there. I started back on ipi as a “gap” treatment and having bone scan as bone mets were confirmed. Looking to add in radiation with the ipi and will see radaitation onc this Thursday. The BRAF and NRAS test was negative. Any others I should look at? Any other trials? I’ve looked at MDA, they feel adoptive cell is great option, U of Chicago. Should I go other places? I’ve done ipi, IL2 and Opdivo. Had great response to ipi in 2013…was NED. Sorry for what everyone is going through…I know I’m sick of this crap. I’ve heard IL-12 with electroploration, OX-40 but I don’t think those are open or available due to exclusion criteria. Staying optimistic…not always easy.
JoshJuly 19, 2016 at 2:44 am #69212jacquesbertherParticipant
Aloha to all,
I was in the phase 1 trial of keytruda in June 2013 every 2 weeks and high dose (10mg/kg). Is no doubt that it saved my life, the load of tumors were on the liver, lungs, adrenal, some up to 7 cm. I was kicked out of the trial after about 1 year due to side effects which turned out to be the best for me – it saved my live as well. That will be more then 2 years that I do not have any kind of medication for my cancer.. Still working don’t ask.. 9 months ago my scan show NED..
Extreme exhaustion is my main problem with leg pain. I hope to find one day some solution to get a better quality of life. I do get better everyday and moving in the right direction with some up and down but moving is the most important for me right know. Avery 3 month Ct scan or PET scan alternatively with MRI of the head every years… Not sure what to expected but feel bless. Just thank you for all your support Catherine and hope all will get better to all. Mahalo.July 19, 2016 at 3:30 am #69213BNP68Participant
Thanks for starting this thread Catherine. I haven’t logged on as much recently so it was nice to catch up with so many. So happy to hear the great stories yet feel for those still struggling with this awful disease. As for me I am doing well. My brief mel history was a WLE in 2006 for a .91mm melanoma, a left axillary dissection in 2011 (Stage IIIB), and a small bowel resection in 2013 (stage IV). I participated in an ipi-nivo sequential trial from Aug 13 to Aug 15. Other than some hypophysitis during the ipi phase which resulted in pituitary damage, the side effects from the trial were minimal. The big decision at the end of the trial was whether to continue treatment and whether to resect the remaining two tumors that had been stable for about 18 months. I grinded over those decisions for a while but eventually decided to stop treatment and to not surgically remove the tumors. Had the tumors been in a less risky location I probably would have opted for the surgery but due to their location the surgery would have been very risky. Next month will be the one year anniversary of coming off treatment. The two tumors have been stable for about 2 1/2 years. Next scan in about 3 weeks.
BrianJuly 19, 2016 at 4:46 pm #69214PrettyLightParticipant
My husband was diagnosed with stage IV melanoma on July 4, 2014. His tumors (lungs, liver, brain) did not have the V600 mutation. The brain tumor was successfully treated with cyberknife. He went through the a full series of Ipilimumab. He then went through 4 infusions of pembrolizumab. He died on May 20, 2015.
You are unlikely to hear from those who do not make it.July 20, 2016 at 11:40 am #69215
So sorry for your loss. We are well aware here of the gap in treatment still. Thank you for sharing.July 20, 2016 at 5:46 pm #69216gostanParticipant I do not post as often as I once did, but I was originally diagnosed in June, 2008 and have been Stage 4 since 2013 with various procedures and treatments over the years. Although this has been a long drawn out experience, I remain one of the lucky ones because even as treatments have given me quality of life side effects and/or failed, my melanoma has been kept relatively in check. Currently, I am in a clinical trial at Dana Farber for glematumumab vedotin as the various immunotherapies have not really worked long term for me. Some up and down side effects and the like, but so far the medical team has been successful in keeping me going with the trial as there has been no progression of my Cancer. We are all the same but we are all a bit different, so all I can offer up is to do your very best to hang in there. Luckily thre is always something new around the corner. This was definitely not the case when I was originally diagnosed in 2008.July 21, 2016 at 11:11 am #69217 So good to hear from you Stan! You certainly are a good example of someone who hangs in there and goes with the flow and against it too. I’m happy to hear things are stable. Each day brings some promise and we hope for new discoveries. Keep up your inspiring work!July 22, 2016 at 12:09 pm #69218RuthKParticipant I had a complete response after a single dose of ipi+nivo in May. Stopped ipi due to a rash, and then my lung mets all disappeared and I was NED within 5 weeks, so I never got my second dose of nivo either. I think I actually felt the battle between my t-cells and the melanoma happening inside me, and I had high fevers and severe chills for about three nights in a row at the time. I’m incredibly grateful for this outcome, but I’m not out of the woods. I’ve been on prednisone ever since and had tapered from 100mg to 40mg when I started waking up with headaches & fevers every morning. Now I’ve got loud ringing in my ears (maybe from acetaminophen?), I can’t sleep, and fatigue prevents me from doing much of anything. I’m just hoping most of this is temporary and my immune system will calm down so I can get off prednisone and start enjoying the extra time I’ve been given.August 2, 2016 at 11:35 pm #69219saderdomerParticipant Clean scan yesterday (1 August 2016). Routine follow up after ending Keytruda (13 doses total) in April 2015 having reached No Evidence of Active Disease status at that time. The good news is that my remission appears to be durable, as does that of those in the original study cohort who reached remission. Only two such patients regressed, which is less than 3%. Regression occurred at about 6 months and at about 1 year. Now showing some hypothyroidism which appears to be a common long term effect of immunotherapies. Other autoimmune diseases are also cropping up. After melanoma, hypothyroidism is not a big deal. I am feeling better in general – less fatigue, more clarity of thinking, just better.August 3, 2016 at 11:39 am #69220 Thank you for posting. All of your posts sharing your course of treatment and status are very helpful to others. Thank you again and wishing all of you some very good moments.August 3, 2016 at 1:14 pm #69221marta010Participant Hi Catherine – thought I would give a summary of my husband’s treatments and his tenacity in fighting this disease for the past 4 1/2 years but it’s become a blur! Long story short, he was diagnosed in March 2012 with Stage IV metastatic melonama with mets in brain and various lymph nodes. He is BRAF positive so initial treatment was zelboraf with gamma knife for brain met, followed by radiation to cervical lymph nodes. Over the past 4 years, he has had 4 gamma knife procedures, 2 craniotomies, brain edema, on a feeding tube for 8 months due to radiation caused ulceration in his mouth/jaw, Yervoy, 2 years of dabrafenib and now on his 6th cycle of Keytruda. It has been a very long journey with many ups and downs. We have had long stretches of relative calm interspersed with a variety of crises. Happy to say that he has been able to celebrate our 28th wedding anniversary, our son’s college graduation and, hopefully, our daughter’s wedding in October. Life is not perfect but he has a great attitude and deals with so many hardships with humor, courage and grace. His last scans showed stable disease – hoping for more encouraging news after his scans later in August. I never thought he would be here 4 years after diagnosis and have faith that research will continue to find new weapons to continue the fight. Thoughts and prayers for everyone fighting this disease.
AnnAugust 3, 2016 at 3:16 pm #69222LesliePParticipant
Your story really gives me hope. My uncle was diagnosed with stage 4 in April.
And it’s only been a few month. But he has really been through the the ringer. I pray all the time he will beat this.August 4, 2016 at 1:29 pm #69223
Ann, You are definitely a top care giver and hope you realize you are a big part of the reason your father has hung in there. I would hope you are taking time for yourself and also wish a less rocky future with this terrible disease. Thank you for sharing and helping others by doing so.
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