MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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vince1962's picture
Replies 3
Last reply 5/5/2015 - 2:19pm

Would like to know whats out there if there is anything!! what type of treatment stage 4 melanoma and hep-c is there a combo or single type treatment. Any advice, Thanks

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affguy's picture
Replies 9
Last reply 5/5/2015 - 11:33am

My Dad had a large ulcerated melanoma tumor removed from his trunk (ribs below armpit) in the summer of 2012 and began interferon treatments that went through May of 2013 (Three 1-month cycles separated by 2-month breaks).  Everything looked clear until recently, with blood appearing in his urine in November and a rather shocking explosion of new, black moles (47 between early December and January 16).  In looking for the cause of the blood, a CT scan showed spots on his liver a couple of weeks ago.  A PET scan last week showed mets to essentially his entire spine and many other bones too, plus overwhelming involvement of his liver (not large tumors, but too many to operate), and his spleen. 

We're now waiting on insurance approval for the dabrafenib and trametinib combination which will hopefully allow him to start treatment the week after next.  The response rate for that combination looks promising, but I'm wondering how long it takes to know whether it's working or not.  My hope is that it's something that starts working quickly and obviously, such that if he's in the minority for whom it doesn't work, he could get started on any other options in short order.  Of course I'm not sure what further options would exist at that point besides ipilimumab.  He has told us that he has no interest in revisiting the side effects he experienced with his interferon treatments.

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Anonymous's picture
Replies 1
Last reply 5/5/2015 - 11:06am
Replies by: Anonymous

What is the best hope for small nodular metastatic melanoma that originated as mucosal (anus)

Are these smaller nodular types more diffucult to treat?   

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Anonymous's picture
Replies 6
Last reply 5/4/2015 - 10:59pm
Replies by: Anonymous, Janner

I was diagnosed with a lentigo maligna in the bowl of my ear and had surgery and a skin graft a few months ago.  I am a teacher and coach; my job puts me in the sun many hours a day in the deep south.  I'm a 49 year old male in otherwise, good shape.  I spotted this new "spot" and showed my dermatoligist.  The shave biopsy came back as a lentigo maligna...I have been seeing my derm on a regular basis for years, have had a few moles removed, and  most came back "mild" with one or two coming back "moderatley" atypical...until this one. So, I saw an ENT oncologist who gave me some options. I chose to stay with him and do an aggressive WLE instead of Moh's.  He took out the skin in the bowl of my ear and the cartilage underneath.  All the margins can back negative and no evidence of any melanoma in the underlying cartilage.  The pathology again came back as lentigo maligna - in situ.

They tell me  I am lucky to have caught this early, but I still feel somewhat confused.  I worry that my job puts me in the sun so much and that lentigo maligna has a high recurrence rate.   When I asked my derm and the oncologist about moving forward...should I stop coaching or participating in outdoor activities?.. they say, "No, just be "sun safe".  I have been and will continue to be "sun safe", but the anxiety I have when outside is sometimes all I can think about. Should I even be outside in the heat of the day?  If I am, will it make it more likely to recur or get a new or different melanoma?   Too many questions....



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mskin314's picture
Replies 6
Last reply 5/4/2015 - 10:46pm
Replies by: Janner, mskin314


I just received a report from my father, who has a Malignant Melanoma - specifically polypoid nodular melanoma. 

The doctor classified it as a PT4B with a 16/MM2 Mitotic rate. I have no problem finding info on this stuff, altough I'd appreciate any info/experience anyone has. 
I need some help in understanding the below underlined text I have found on the report that I beleive is very important, I'm just not sure how to interpret it.
Entire report below: 

Gross Description:













I think above underlined text is very important, however, I am not sure what "Not Identified" really means? Does this mean everything looked good?  Also is the deep margin being uninvolved important? seems to be to me...

I appreciate anyone with experience or experts can tell me from this report. My father is in a situation right now where medical care is not really available, and getting these reports correctly interpreted to the family is near impossible. We are working on getting his lymph nodes looked at. 

Thanks again




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arthurjedi007's picture
Replies 30
Last reply 5/4/2015 - 8:53pm

I've had a good 11 month run on keytruda plus 8 spots of radiation. Still it hasn't been enough. Stuff keeps growing. Since it's doing some good and it's fda approved I can stay on it until I get on something else.

Basically 7 are shrinking. All at or near radiated spots. 5 are growing including the t10 that almost paralyzed me last year. One new one is on or in my left kidney which is suprising because it is new and pretty much all my other new tumors in the past started in the bones and grew out. The rest of im assuming around 20 stayed the same. So I'm glad keytruda is fda approved because trials would have kicked me out. The docs were actually debating whether to give me it today and decided to because it is doing some good. After all keeping 20 tumors at bay and other stuff is pretty good but not good enough. Kind of weird how each scan shows things growing but they are usually different spots. Also by growing 3 of those 5 are declared that because of the uptake not thst they see a larger mass outside the bone. The other 2 are declard that because of the uptake and soft tissue mass is larger. The new one on the kidney is also a tissue mass.

im very suprised the scan wasn't better. But I'm glad finally Siteman did a fairly detailed report that at least listed each tumor shrinking and growing. Also it could have been worse but I was expecting much better. Way better than the first 3 meds where everything kept growing though.

Now to scramble and get on a new treatment. Siteman has 30 open slots for the ERK trial. It is BVD-523 by BioMed valley discoveries. It is part 2 of phase 1 where they have already figured out the dose and are expanding to more people. Depending on which nurse you believe either 1 patient has had a partial response or 2 patients have had partial remission. That is with about 16 patients none of which are at Siteman because they haven't recruited anyone there yet. About 5 places have this trial. The side affects so far seem very similar to zelboraf. Since neither zelboraf nor the taf mek combo shrank anything I don't think this is the right trial for me but my doc does but he was out of town so couldn't talk about it. 

Tomorrow I guess I'll call university of Chicago for an appointment with dr Gajewski or dr Luke and try to finally go there and try to get into their opdivo pd1 anti lag3 trial or see what their thoughts are on what I should do.

Also TIL with dr Rosenberg is still an option but based on what Catherine said I'm not sure if I should pursue that.

im disqualified from the huntsman virus treatment because of bone metastisis.

Since keytruda is not enough for the internal stuff the trials for lesion injections with pd1 are not a good choice.

A lot of the other trials like pd1 anti kir and stuff I'm disqualified for cause I've had pd1. Although I may be missing something.

im not seeing a Ido pd1 combo or anything that might be good unless I'm missing it. Wdvax is still phase 1 and I've heard nothing about how good or bad it is.

So I dunno really what to do. Quite awhile back a lady on here posted how the pd1 anti kir trial failed her and she decided to go to md Anderson. I never heard what treatment she did or how things turned out. Her way of thinking she already did a pd1 combo so she needed something else. So maybe they have something good I just don't know about.

I just don't want to make a bad decision but I don't see any really good options. Since the t10 is getting worse I feel I only have one last shot at a treatment. I have to make it a good one or I'm probably not going to make it further. Maybe instead of Chicago I should just go to md anderson or memorial Sloan Kettering. But those typically require flying and the assistant doc couldn't say if my spine was ok for it or not based on the pet ct. They would need a mri. But he did say there was no mention of narrowing of the spinal canal and stuff. Plus I can still sit and touch my toes fine which I couldn't do last year when I was almost paralyzed. So I dunno. Also I get wore out fast after only a couple hours traveling. Also I need lots of food and drink or I get weak. Plus my parents who have been taking care of me are not getting any younger. So I just don't know what to do.

Thank you everyone one for your prayers and best wishes. I wish I had better news.



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AshleyS's picture
Replies 6
Last reply 5/4/2015 - 7:17pm

I started the ipi+nivo trial at MD Anderson on March 5. I cruised through the first 2 infusions with only a rash controlled by antihistamines. After the third infusion of the combo (out of 4) I developed a fever. I had blood work and a chest X-ray. It was clear. A couple days later I started to feel nauseous. It spiraled into chills, vomiting, and diarrhea. I took in about 400 calories in 4 days. My husband took me to the local ER. They put me on fluids and after talking to my docs at MDA, I went on steroids. I was bummed, but  I know it was my only choice . 

It sounds like I will not have my fourth combo infusion. I'm kind of sad about this. I'm hoping that they will continue me on just the anti-PD1.  It sounds like I'll be lucky and get to have a colonoscopy this week! We'll see where this all takes me but it definitely feels like a setback. 

In the meantime, I'm happy to be feeling better for my husband, my two-year-old, and my five-month-old baby. 



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MoiraPA's picture
Replies 5
Last reply 5/2/2015 - 10:24pm
Replies by: Janner, MoiraPA

Hey everyone. This might be a dumb question but can someone tell me what "AML" means/stands-for if on a pathology report (from a shave biopsy) it's listed as the "clinical diagnosis"?

if it matters, the mole came back severely atypical



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I am 30 years old and have recently been diagnosed with Stage 1A melanoma. I have a 22 month old son and as all of you know hearing the word cancer is horrifying. I have surgery on Thursday and I am so scared. I just cannot believe this is happening. I am more scared of something happening to me and leaving my son behind. I know that stage 1A is more than likely curable, but my biggest fear is it coming back at a higher stage. I find myself now constantly living in fear and staring at the other moles on my body thinking they are all melanoma. 

I am very curious to see how old you all are. The doctor told me that the average age is 50/60 to get melanoma. 

I pray for all of you that we can all beat this horrific cancer and live long, happy, and HEALTHY lives. 


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_Paul_'s picture
Replies 12
Last reply 5/2/2015 - 8:53am

I just had my 4th Keytruda infusion yesterday and it seems things are going well. My oncologist does not seem too concerned about giving me a scan right away as my blood work is good and I am not exhibiting any symptoms from the melanoma. My last scan was in January, and he thinks July sounds like a good time for the next one.

It appears to have stopped a new tumor on my shoulder which had grown 10 times in volume from December to January. If it was still growing at that rate I would not be on my keyboard right now!

So it seems like I will be on Keytruda for the forseeable future. Do you think it is worth getting a port?

Thanks! - Paul.

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RJoeyB's picture
Replies 7
Last reply 4/30/2015 - 5:35pm

Hi all,

This is Joe, a.k.a. "RJoeyB", checking in after a long absence from the site, with a long overdue update on an overly eventful several months, most of which were spent in four different hospitals, nearly dying twice from two different rare complications of complications of treatment. I posted this over on the MIF forums and Brian P. had the good suggestion for me to repost over here on MPIP. I had heard from Catherine at MIF (thank you!) several weeks ago and Frank ("buffcody") a little further back and promised I'd write a more detailed update when I had some more energy about what's happened with me since just after Thanksgiving. Settle in for a long post, even by my standards. 
As you may recall, I had been dealing with a complication called radiation necrosis (or "RN") from the CyberKnife radiation treatment from the brain metastasis and first craniotomy I had a couple of years ago. The RN first manifested itself as a problem with my gait in my left foot last spring and progressively worsened through the summer and fall. Standard protocol is to treat the primary side-effect, cerebral edema or brain swelling, with steroids, typically Decadron (dexamethasone) and eventually the RN often resolves on its own. While it is difficult to tell RN apart from new melanoma itself with scans, mine followed the pattern of RN more closely according to all of my doctors. Through the time I was dealing with the RN, my left arm and hand also started to weaken from the neurological effects and I struggled with the severe side-effects of the steroids, especially fatigue, high blood sugar, and weight gain, but was able to manage through, although eventually required the use of a cane.
Unfortunately at Thanksgiving, I had a night where I had terrible pain and couldn't move my left leg or stand at all, so was taken by ambulance and admitted to my cancer hospital. After a few days, I improved some, but my doctors told us that the RN wasn't improving and the effects of the steroids were taking too severe of a toll on my body, so we jointly made the decision to have another brain surgery to remove the RN, which, by that time, had grown beyond the size of the original tumor. I was transferred to the parent hospital of the health system where my cancer center does its neurosurgeries and had surgery a few days later. Repeat craniotomies to the same area always carry additional risks — my neurosurgeon describes the first surgery as "doing snow angels on fresh powder," and the second, after the scar tissue from prior surgery and radiation as "snow angels on a plowed gravel parking lot." Also with RN, there's always a risk that they may find some new malignant cells too, but the surgery itself went well — they followed the same scalp and cranial incisions as the first time — and no melanoma cells were found in the pathology.
Although the surgery and immediate outcome went well, I soon developed a blood clot — a deep vein thrombosis ("DVT") in my calf that quickly moved to my lung as a pulmonary embolism ("PE") which can often result in sudden death. DVTs are about four times more common in cancer patients and in my case may have been a complication of the lack of mobility in my left leg. Normally they would treat clots with blood thinners, but since I'd just had the craniotomy, the risk for a brain bleed was too high, so an inferior vena cava ("IVC") filter was placed in the vein leading from my lower body to my heart to prevent further leg clots from moving up (I haven't had further clots, but need to be aware of the symptoms) and I was kept under close observation in the ICU until they were comfortable starting me on blood thinners several days later. The clots soon resolved and I moved to a highly-regarded rehabilitation hospital for physical and occupational therapy for my left side.
With intense inpatient therapy (3 hours a day), I made quick progress in rehab and was soon back to moving well with the assistance of the cane and had a discharge date before Christmas. But a few days before discharge I again experienced excruciating pain in both my left leg and abdomen. I was transported to the closest emergency room where they determined I was experiencing a "retroperitoneal hemorrhage", or bleeding into the back of my abdomen near my spine.
I was moved to the trauma center unit, one of the few in suburban Philadelphia (they were amazing), but despite attempts to find the source of the bleeding and stop it, my kidneys and lungs eventually began to shut down, so I was put on a ventilator and dialysis. I was in critical condition and we were told it was a dire situation and that we should have family start making their way to Philadelphia. In the minutes before I was intubated I had the most difficult conversations with my wife and daughters (17 and 21), ones I never expected to need to have at my age (44).
The source of the bleed was never found — it typically isn't — but the thinking is that spending time on heavy doses of powerful blood thinners made me more prone to bleeding, combined with the continued physical straining to walk and stand. I received 19 total units of blood transfusions to replace what I lost. After two rounds of dialysis, my kidneys began to recover and after four days on the ventilator, I was weaned off and again able to breathe on my own. The ventilator tube was removed and I was taken off of the heavy sedation on Christmas Day. My doctors told me they hadn't seen someone start talking so much or so clearly so soon after having a ventilator tube removed — I guess not unlike my writing ;-). 
Around New Year's, I was back to the rehabilitation hospital for more inpatient PT (for my leg and walking) and OT (for my hand and arm). The abdominal bleed left large hematomas pressing on the nerves between my spine and left leg — coincidence that it also affected my left leg as was the RN — leaving me with little to no movement in my leg. The largest of the hematomas was slightly smaller in shape and size as a standard ream of paper (10x7x3 inches) and is still being resorbed by my body — and still pushing on the large femoral nerve into my leg and pushing one of my kidneys out of position, although it still is working fine. My left arm and hand also worsened following the brain surgery and lack of use during the time I was hospitalized for the bleed, so I have limited use of my arm and fingers. My left foot also has a condition called "foot drop" that is actually a neurological result of the RN. I require a brace to control the foot drop and an additional effect called "clonus" that causes uncontrollable shaking when the foot is in certain positions. The brain incorrectly signals my calf to activate, causing the foot to droop and slightly invert, causing pain and the intermittent clonus. I made improvements over six weeks in inpatient rehab, going from not being able to sit at the edge of the bed without assistance and requiring 2 or 3 nurses and aides to get me from the bed to the wheelchair to being able to walk several laps on the floor with a cane, leg brace, and help of a therapist moving my left leg.
All in all, and what's most frustrating, is that the last year has not been new melanoma itself, but two different complications (the DVT/PE and hemorrhage) of a rare complication (RN) of a radiation treatment (CyberKnife) from the last new melanoma tumor I had over two years ago, the brain metastasis — my most recent full-body PET scan a few weeks ago again showed no new melanoma, although there is an area in my left shin that received prior radiation (three years ago) and surgery (last May) that lit brighter but should be treatable if needed (it could still just be post-surgical inflammation); my last brain MRI last week again was clean for any new melanoma and the surgical site looks very good for continued healing — my last one in January was clean except for remaining inflammation and edema that would be expected to show up post-craniotomy. The edema is now gone. My cancer doctors are actually quite pleased with my continued progress against melanoma itself. Through 14 tumors, 2 clinical trials, 8 surgeries (including 2 craniotomies), 6 rounds of radiation, 3 immunotherapies, and 2 rounds of chemotherapy (part of the TIL immunotherapy), this last set of complications ended up being the worst part of my nearly 5 year battle with melanoma. 
I now have "left hemiparesis" or partial paralysis of my left side. I've been home from inpatient rehab for a couple of months and, for now, I continue to use a wheelchair and we've had to make a number of modifications to our home — a stairlift, outdoor wheelchair ramps, a hospital bed in our dining room temporarily replacing our table, new "comfort height" commodes and safety rails in the bathrooms — along with a completely new living routine. I have had in-home PT and OT 2-3 times per week since getting home and am seeing some small improvements, being able to take a few steps with the cane and brace, and on carpet (which is more difficult than hard surfaces in the hospital), but not requiring the therapist to move my leg for me. This past Monday, I finally started outpatient PT and OT a few times per week back at the rehab hospital. There's only so much improvement I could make in the limited space of our home, with little equipment here vs. the outpatient gym, so we hope being in outpatient will bring further improvements. For now, our daily schedule and routine is very different and will be for the foreseeable future. It's a lot of work for my wife and she has been a real trooper at my side the whole way. 
No one can say for sure how much movement, strength, or sensation I'll get back — only time and hard work will tell. Inpatient rehab meant 3 hours of therapy every day, and although being home has been good, it slows the pace of improvements. It's been encouraging to see some new strength and movement in recent home sessions — I hope outpatient rehab will quicken the pace some, even though it's limited to 5-6 hours per week (vs. 15 as an inpatient). I've unfortunately had continued pain, sometimes excruciating, and fatigue since getting home, but am also seeing some small improvements. I had trouble sleeping for a while (an hour or two per night), too, but that is also improving some. Since I can't make the small adjustments and movements in position when sitting down or laying in bed that we all make, day and night, and take for granted, my left leg muscles tighten and hurt frequently. My wife needs to help me reposition my leg every few hours, day and night. It is slowly getting better, very slowly. It takes its toll on her rest as well.
There is a pain management and muscle spasticity specialist who we also now see at my cancer hospital — through most of my melanoma journey, I haven't had to deal with much pain until now. The steroids and other complications caused issues with my blood sugar, blood pressure, and blood oxygen levels, but we're working with my various doctors and the complications are mostly all now well managed and we're in the process of slowly weaning me from the countless medications and O2 machine. I've been sleeping upstairs again so hope to get rid of the hospital bed soon. It's all a slow process, but we're seeing progress. 
Since I was on Decadron for nearly eight months, my adrenal glands are no longer producing cortisol. I'm tapered off of the Decadron and now taking hydrocortisone (a biologically equivalent dose to the amount of cortisol produced by the adrenals). We're now starting to taper the hydrocortisone in an attempt to restart the adrenals to produce cortisol, but the taper process could take months. A week in, after dropping the dose by only about 15%, I've noticed a great increase in fatigue, even with the already significant amount of fatigue I already feel. 
In the five months before the initial gait symptoms of the RN, I managed to lose 45 pounds and was hoping to run in this year's MIF SFTS 5K. After prolonged Decadron use and the heavy fluid retention in the hospital, I then gained 55 pounds, but have since lost them over the past couple of months. But there won't be any running in my near future, if at all. Again, there is no way to determine yet how much of the brain and nerve damage is permanent. Hopefully the expected and renewed weight loss will help with blood pressure, blood sugar, and need for O2. 
The IVC filter may or may not come out. Typically they like to remove them after 3-4 months in a "younger" person (I don't feel that young) before they become permanently embedded in the vein, but with my history and current lack of leg mobility they could choose to leave it in; we'll decide with my doctors soon, but I won't be surprised either way. 
I've had a fall since I've been home, a few weeks ago. Middle of the night, I had to use the bathroom and as we were getting me back into bed, I made a misstep and went down, bumping my head on the side of my nightstand. We had to call 911 to help get me back up and also have paramedics check me. I didn't need to go to the ER because I wasn't having concussion symptoms, so my ego was more bruised than my head. Another reminder of vulnerability, though. I also had a near fall in the shower when my knee buckled as I stood to get up from the shower bench, but between my wife's strength and my own right leg, we managed to keep me from going down, but not without another bruise. 
I guess that brings you mostly up to date. I really appreciate everyone who's followed along and those of you who checked in with me — or tried to. There were times when I obviously couldn't respond and despite extended time recovering in the hospital and now at home, therapy and recovery has been exhausting. But again, please know your kind words, concern, and encouragement were all appreciated. I hope to be able to participate here more again moving forward. My family and I are very much looking forward to attending the MIF SFTS event this weekend, only a few miles from our home! Hope to see some of you there. 
All my best,

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yazziemac's picture
Replies 11
Last reply 4/30/2015 - 3:05pm


My husband, Pete, found out yesterday that one of his many brain mets is bleeding and his liver is very inflamed. He finished 5 days of whole brain radiation last week and was scheduled to have his 3rd Ippi infusion today.   He has to take a break from the Ippi and switch from Dexamethasone to Prednisone to try to address the liver and brain bleeding.  We'll be meeting with the oncologist weekly for blood work.  If he develops very bad headaches, we are to go to emerg.  I did a search on brain bleeds here on the forums and all the posts that I could find seemed to indicate that bleeding brain mets signalled "the end".  Is that the case?  No one has mentioned hospice to us at this point.  Pete isn't in pain, his only symptom is extreme fatigue and some unsteadiness with walking.  I would really appreciate your feedback.



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darinohio's picture
Replies 4
Last reply 4/30/2015 - 11:31am
Replies by: Anonymous, darinohio

Just curious if anyone else panics over odd unexplained pains. I have been having radiating pain under my arms

for a couple weeks now. I first thought it was from working too hard in the yard but it hasnt gone away.

somtimes its painful and runs down to my hands.

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Anonymous's picture
Replies 6
Last reply 4/28/2015 - 11:12pm
Replies by: SusanD713, Anonymous, jennifer83

Good Morning:

I was wondering how many on this board started as a stage 1a or b, progressed to a later stage, and the time frame of the progression.   I was dx stage 1b in June 2014 with a nevoid melanoma and I know that my chances of never having to deal with melanoma again are excellent, I still can't completely move past the thought that it one day will resurface.  

I find myself coming to this site often not just as a resource but to silently cheer on and offering up prayer to those who are so bravely fighting this awful beast.

Blessings to you all

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Anonymous's picture
Replies 5
Last reply 4/28/2015 - 11:51am

Hi everyone

I have been on Merck pd1clinical trial for over 3 yrs and I am a complete responder. I am going to discuss with my doctor on Tuesday, about stopping the drug & asking if I can stay on the Merck trial in a "Observation" status.

I have read post of other Merck trial participants being on observation and remaining a participant in the trial. Unfortunately, I do not remember the specifics what the protocol is. Does my doctor just notify Merck that I am a complete responder and want to remain on the trial in"observation status"? I realize that there are no guarantees if I were to recur that Merck would let me back on the trial.

I have a few questions: 1.)Once Merck agrees to put you on "observation" status, do you still have 2 more infusions before you stop the drug/trial? 2.)Do you still have to go in for regular scheduled blood work & doctor appts? 3.) Do you still have scans every 12 weeks. 4.) Is there any other protocol you have to follow to remain as an "Observation" trial participant.

Thanks for replying to my post. I would love to hear from others that are doing the Merck PD1 trial that have been allowed to remain on the trial with an "observation" status

Here is the trial I am on

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