Feeling very isolated and abandoned…Any suggestions on what to do after Yervoy?

My husband had four infusions of Yervoy from September 9 to November 19, 2011. I will describe his situation with the hope that his story helps others and that someone might have some suggestions for him. At this point, we are truly in need of suggestions. We are in new York

Diagnosed with a scalp melanoma 2003, my husband had a sentinel node biopsy January 2004 and subsequently, removal of 31 lymph nodes, with one contaminated. The doctor then suggested what was believed to be the standard of care at the time, Interferon, alpha, which he had from for ten months, from 2004 to 2005. When we went to Sloan Kettering in 2003, we were told that he had a 30% chance of surviving to 2008. He was NED until 2009. During this period, he did qigong, and we incorporated a lot of raw foods and juicing.

My husband was very confident and happy that he had beat the melanoma, so he stopped doing qigong and let work responsibilities consume him. In fact, as he now has reduced his duties, three people are doing his job and having difficulty keeping up. This caught up with him, as in 2009, a PET scan revealed a one sub-centimeter lung nodule, an omental lesion of 15mm and a neck lesion in the area directly below the original scalp melanoma. He had surgery for omentum lesion 2009 and surgery for neck lesion on January 2010.

His melanoma became more aggressive after the surgery. It was, as I was told now, "in transit." In May 2010, however, another neck lesion in nearby location (under original left scalp melanoma in May 2010) spontaneously resolved within days. I had read on "Life Extension' that Tagamet could reverse melanoma, gave him some, and it seemed to work. The PET scan revealed that it had "resolved." All that remained were the lungs.

The Daoist Doctor of Chinese medicine that my husband began to see in 2009 prescribed teas and food therapy that led my husband to have stable disease in the lungs until May 2011. It seemed to me that things only worked for short periods of time. Instead of one, now there were three sub-centimeter lung lesions appearing in the PET scan. We then tried macrobiotics and a different form of qigong over the summer of 2011. The results were not good. By August 2011, we saw the growth of three lung lesions and pleural thickening. The PET scan of August 15, 2011 indicated that there was a 10 cm. mass. Many suggestions, over the summer and after the PET scan that my husband should try Yervoy, so he began in September 2011 and he had his last infusion in November 2011. The November 22, 2011 scan indicated that the lung melanoma was now 17 cm. Terrible chest pain began after the 2nd infusion. The administering doctor told him that this pain was likely caused by inflammation caused by Yervoy.
In December 19, 2011, my husband began radiation.

I now understand that it would have been best to reduce the tumor load prior to beginning Yervoy. I know that there are late responders, and that these late responses can begin anywhere from six months to one year after Yervoy; however, if one does not have an increase in Absolute Lymphocytes and has an increase in tumor load that is greater than 25%, then it appears unlikely that one is a late responder. Additionally, while everyone I spoke with in the summer seemed to indicate that late response was the norm, I am now reading that it only happens in a minority of individuals. I am unclear about whether the 15-20% response rate to Yervoy takes into account late responders. I have not seen much literature or case studies on Yervoy late responders because it is so soon after FDA approval.

Had we known what we know now in 2003, this is what we would have done:

Obtain a molecular profiling test from Caris Medical, as this is covered by most insurance. http://www.carislifesciences.com/

We did this in the midst of Yervoy treatment at the suggestion of a colleague of mine. We discovered that my husband has low MGMT and that his tumor has a poor ability to repair itself. Given this, a strong dose of chemo, rather than immunotherapy, would have helped at the outset, when the tumor was less aggressive. Now, it obviously has been allowed to grow, and aggressive tumors are very clever at transforming themselves, so temozolomide would likely not be a good chocie.

Additionally, we discovered that my husband has high SPARC expression. This means that ablaxane, or nab-paclitaxel, might work. Studies for this on melanoma do not seem too promising, as it works on 14-20% of the study participants; however, it's not much different from Yervoy, so had we known this it would have likely been a better choice than Yervoy.

Molecular profiling is available, and I urge everyone to take advantage of it so that they can make decisions that are more specifically suited to their profile.

At this point, my husband is going to begin a radiation boost next week. We hope that the chest tumor, which is causing excruciating pain, will shrink and that the broken pieces of melanoma will cause the Yervoy to kick in, as this is what my husband's oncologist mentioned might be possible. He also has increasing vomiting. I hope that this is a late response to yervoy or related to his increasing use of painkillers. I noticed that Lisa13 mentioned that her oncologist believed that her nausea was related to a late response to Yervoy. I certainly hope this is true.

If anyone has any light to shed on possible options after Yervoy or helpful comments, i would be most appreciative. Hearing your stories, and your encouragement to each other has been inspiring, as being a caregiver is so terribly isolating and sad. I also wrote this because I urge anyone who begins Yervoy to reduce their tumor load, either by simultaneously having radiation or chemo, which can help Yervoy work better.