MPIP: Melanoma Patients Information Page

My dad is in cycle 2. I would like feedback :)

My husband was diagnosed with stage 3 melanoma last June 2012. He found a lump under his left arm. He had the lymph node removed and it was melanoma. After that they went back in and removed 8 more lymph nodes and they were all negative. He also had a mole removed, the mole was also Melanoma, but they had trouble getting a positive for Melanoma. The biopsy at the office was negative, the positive didn't come until it was completely removed with the positive lymph node at surgery. All scans were clear at that time. In September he started the intro a. And the in January of 2013 he had a reoccurrence in the exact same spot. Since he was taking the treatments we thought it was scar tissue. The Melanoma was directly behind his scar. So, that was removed. It was decided after that to do radiation. So, in March he started his radiation and the day after he finished, he found another lump in the same exact spot and that too is Melanoma. That's currently where we stand. He had a scan last Friday and we have our follow up appointment this Thursday and I pray it hasn't spread anywhere else. I guess my first question what's some other treatments and is this happen a lot? To get Melanoma with taking these treatments? Thanks for the info.

Was wondering about you this morning. I hope all is well.

Amy

Hi!  My husband is currently receiving treatment for Metastatic Melanoma in which he also has a sarcoma in his sinuses that the doctors still haven't told us the name of.  He is currently on chemo for just the melanoma atm called Yervoy.  I have read a few of posts on here but I'm still curious to anyone who has received their full treatment and what were their results?  My husband started chemo with 1 tumor on his side the size of a tennis ball at that point, 3 spots in his intestines, and a spot in his liver.  Since then, he just received his 3rd dose of chemo and it has seriously spread. He has spots popping up that were not on the scans in which he gets the scans every month sometimes every couple weeks since his heart is beating out of control has been anemic apparently for a few years without ever knowing till the cancer itself in january started putting him in the hospital.  Now he has so many tumors all over his chest wall, back, shoulders, upper arms, stomach, and now it's spreading down his legs.  Altho I must say the tumor on his side is getting smaller but all together his melanoma has gotten 10imes worse!!!  With how fast it's spreading compared to whatever Yervoy isn't doing that's suppossed to be doing, we're starting to get really scared (not that we ever weren't).  I'm sorry for sounded a little negative, but at this point i'm just scared and sad.  I'm fully aware that yervoy takes time, loves to work more with the organs, but with all the water retainage, cancer spreading, and his pain worse, I'm starting not to have any hope.  I just hope that by his 4th treatment we see more of a difference but the scans don't show that with them growing and spreading.

Did anyone else have their melanoma spread so fast during their Yervoy treatment and what was the outcome after the 4th?  Did the tumors go down or away?

How were your scans on your organs after Yervoy?

Did you retain tons of water like they say 10% of patients can suffer from severe water retainage?

At what point did your doctor say it wasn't working if at all?

Why would it make 1 tumor smaller compared to the 10 that are growing? (altho they do look like they are dying rather than growing to a baseball size) i'm confused.

Any of your information would be greatly helpful.  I would love to read your experiences.

Hi,

I am new to this forum & I am so lucky I found you. Everyone is so helpful & informative.

I am participating on a MERCK PD1 trial. I have been a completer responder for over 6+ months. I just had my routine MRI Brain & CT scans. My scans showed NO tumors in my body BUT my brain MRI showed a 7MM brain met of the posterior left frontal subcortical.

My doctor is waiting for Merck to decide if I am going to be kicked off the trial. I am not sure if other sponsors (e.g. BMS) let you radiate a brain lesion and then go back on the trial.

I would sincerely appreciate any input about your experience with being on a trial and then getting a brain met. Were you able to stay on the clinical trial?? Did you radiate your brain lesion and the continue with the clinical trial? Who was the sponsor of your clinical trial?

I realize that every clinical trials have different protocols but is there are general rule when it comes to getting a brain met while participating in a clincal trial??

Thank you so much for taking the time to read my post and responding.

NED.

Lungs, back, brain all look good after one round of IL-2.  Still recovering from the stroke and radiation and still experiencing some pain, nausea and fatigue, but at the moment Dian appears to be a complete responder to IL-2.  I'm wishing she dances with NED forever and has a quick recovery from all the rest.

Researchers reported on Wednesday that a combination of two drugs from Bristol-Myers Squibb shrank tumors significantly in about 41 percent of patients with advanced melanoma in a small study. In few of the 52 patients in the study, tumors disappeared completely, at least as could be determined by imaging.

“I think it was really the rapidity and the magnitude of the responses that was impressive to us,” Dr. Jedd D. Wolchok of the Memorial Sloan-Kettering Cancer Center, said in a telephone news conference organized by the American Society of Clinical Oncology.

Dr. Wolchok’s study, and others on the immune system drugs, will be perhaps the most closely watched items at the society’s annual meeting, which begins on May 31 in Chicago.

The drugs are also generating huge interest on Wall Street, which projects billions of dollars in annual sales. While Bristol is generally considered to have a lead, Merck and Roche are not far behind with similar drugs.

Data released Wednesday from an early-stage study of Roche’s drug, which is known as MPDL3280A, showed significant tumor shrinkage in 21 percent of 140 patients who had a variety of cancers including lung, melanoma and kidney cancer.

The studies are small and they did not compare the drugs with a placebo or with another treatment, and it is unclear if they will lengthen lives. Moreover, it is unclear how long the effects will last, though there are signs that for many patients, it could be a year or more.

Cancer cells often successfully hide from the body’s immune system by preventing T-cells from attacking them. The new drugs basically work by disabling brakes on the immune system, allowing the T-cells to attack the tumors.

One of the drugs in Bristol-Myers’ combination is Yervoy, which was approved as a treatment for melanoma in 2011. Yervoy disables an immune system brake called CTLA-4. It shrinks tumors in only about 10 percent of patients, but the effects can last for a long time.

The other drug in its combination is nivolumab, which is not yet on the market. It disables a brake known as PD-1, which sits on the surface of T-cells. Tumors can produce a protein called PD-L1, which binds to PD-1 and makes the T-cells inactive.

Nivolumab, and the drug being developed by Merck, called MK-3475, are antibodies that bind to PD-1, while Roche’s drug binds to PD-L1. It is not clear yet which approach is better.

It may be possible to test tumors for the presence of PD-L1, and use the drugs mainly for those patients, where it is expected to work more effectively.

It is also not clear yet how many types of tumors the drugs will work for. All the companies are targeting melanoma, a deadly skin cancer, because there is evidence that it is sometimes controlled spontaneously by the immune system. The companies also have data for lung and kidney cancer. Roche’s study showed some effect in colorectal and head and neck cancer as well.

Bristol-Myers’s stock rose 5 percent on Wednesday, even though the results of the study were not released until 6 p.m., after the close of regular trading.

Mark Schoenebaum, the pharmaceutical analyst at ISI Group, said investors were hoping the combination of the two Bristol drugs would significantly shrink tumors in at least 50 percent of patients.

He said in a note on Wednesday that the overall shrinkage rate was perhaps a bit below expectations but added that for many patients, the shrinkage was more than 80 percent.

“The point is that the depth of those responses is pretty incredible,” he wrote.

Some experts say that tumor shrinkage, a measure that evaluates conventional chemotherapy drugs that poison cancer cells, may understate the effect of these new drugs.

“Sometimes it takes awhile for the immune system to be revved up,” said Dr. Gary Gilliland, who leads cancer drug development at Merck.