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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Millykamp's picture
Replies 10
Last reply 8/14/2015 - 3:45am

About 2 weeks ago I had an shaved biopsy on a mole done on my neck. The derm had called and said we need you back in to redo the same spot. Due to what it had said  in the report its non cancerous but it's giving us some reading...  I go in tomorrow for re shaved. But this time more wider and deeper tissue is being biopsy on again...  

 

I am am confuse by the whole thing. Can someone explain it to me?   

Melissa 

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Birdlo's picture
Replies 8
Last reply 8/25/2015 - 4:25am
Replies by: Anonymous, Mamarose0403, stars, Birdlo, CHD, Bubbles, DianaD

Hello,

I'm recently diagnosed with melanoma on my ankle, 41 years old. T1a, superficial spreading, 0.58mm, Clark's level 3, no ulceration, dermal mitoses <1/mm2, no regression. 

I'm scheduled for a wide excision surgery and the surgeon also recommended sentinel lymph node biopsy, though optional. He did reassure me that the chance of finding anything in the nodes was about 5% or less, but he thought I might want to have that extra reassurance and he assured me that other than mild pain at incision site, it would be very unlikely that I would suffer side effects from the biopsy. I agreed to the biopsy with the surgery. I WOULD like to have that more certain assurance that we are in the clear.

Anyone here with thoughts on this? From all that I've read online, SLNB is NOT recommeded for lesions under (about) 0.7mm, at least those without any other features present such as ulceration, faster mitoses, etc. So is there some reason I shouldn't have the SLNB done? I'm not ooking forward to having any surgery, and certainly not anything "extra", but I'm willing to go through it if in fact it will give me more certainty of being free of future effects of this tumor. 

Any helpful comments appreciated. 

Thank you!

Louise

 

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Wow Sarah it sounds like your son needs something to work really soon. 30 to 40 brain mets and already had lots of radiation. Poor guy. I feel so sorry for him.

Keytruda might work a miracle but in my opinion he needs something really special. You already go to Chicago and that is where this trial is. It's at the University of Illinois in Chicago. The trial number is NCT02355535. One of the names for the medicine is PAC-1. It deals with melanoma and other cancers with a specific focus on the brain.

You can call the nurse Palak Soni at 312 413 1069. Her email is psoni16@uic.edu. She is very very sweet but talks a lot. Also still has a little bit of India accent but I could understand her fine. Also she can be a bit laid back and not into urgency but very gentle persuasion should get you in quick. Afterwards she was very quick in getting stuff done. Like she had the biopsy results in 2 weeks compared to the university of chicago 7 weeks.

Another nurse that I didn't meet is Alisha Williams at 3124132746. alishaw@uic.edu

The doctor is Dr Oana Danciu who might be at 3129961581. ocdanciu@uic.edu

I reallly really really hope this helps. The only reason I knew of this trial is because brian or kevin or um can't remember who posted it about 6 months or so ago. When I was there in May I didn't see the doc just nurse Palak but I decided it was too scary to be the first person on this. The trial just started in May. Hopefully it will work a miracle for your son Arthur.

Artie

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Eileensulliv's picture
Replies 13
Last reply 8/14/2015 - 6:29pm

On Thursday, I went in for a CT scan (with contrast) and my usual nivo treatment. Before getting nivo, they give me some Benadryl because I broke out in hives once while getting my nivo. When I had a CT scan a couple of months ago, I started vomiting towards the end of my nivo treatment, and was really out of it for at least a day, so they started giving me half the dose of Benadryl during my treatments, and I have been just fine during every treatment since then.

This past Thursday I had the scan and the treatment, complete with Benadryl. During the treatment I started feeling cold and tired, which is not entirely unusual. I finished the treatment and they removed the IV. I went to the bathroom and started shaking from the cold. I went to gather my things and leave, when one of the nurses stopped me because I was shaking so badly. She looked at my eyes and immediately sat me back down, saying I was having a reaction. Getting another IV in for more Benadryl was a challenge because of the shaking, but they got it in and my reaction seemed to calm down. And then I started vomiting and fever spiked. Tylenol was no help for the fever, and eventually I was admitted to Hopkins, where I stayed until Sunday.

They checked all sorts of things, as I also developed shortness of breath while in the hospital and had to be on oxygen. The shortness of breath still comes about, but does get better everyday. They treated me with prednisone, and I have started to taper the dosage. I'm hoping this won't delay my treatments as it did for me back in March. My onc and I will talk later this week about how to proceed. At this point, it's safe to say something about the CT contrast isn't sitting well with me. But is it the contrast alone or when it's with the nivo... We don't know. 

Have any of you experienced this? I'm just curious as to what my future scan options will be. My onc says he thinks we could try a CT without contrast, but that there are other options.

Im sorry to make a long post even longer, but the BEST part is the CT scan results.... GREAT NEWS!!! The tumors in my lungs and most lymph nodes are GONE! The mesenteric lymph node in my bowel is stable, no change... However, it is just barely larger than a normal lymph node, and may just stay the size it is now because it was so enlarged earlier this year. My onc seems to think if he were to look at it under a microscope, he wouldn't find any cancer. He says we will continue on the nivo and scan again in another couple of months, but that so far "everything looks great"! Even in the hospital when I was, of course, wanting clarification (in utter disbelief that the tumors in my lungs and other lymph nodes are just GONE) he said he would call this a POSSIBLE partial remission! I think he was trying to be very cautiously optimistic with me, but I just kept pressing and pressing! 

I just read the CT scan report this morning and kept looking for the second page... It was so short! Here's to good scans, short reports, and a celebration without a hospital stay! Thank you all so much, I love the support I continue to receive through this board!

Eileen 

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heiditemple's picture
Replies 4
Last reply 8/13/2015 - 8:03pm
Replies by: lmhl, DZnDef, DianaD, CHRISNYC

A few weeks ago, I had surgery to remove a lump on my neck that showed up basically right in the middle of where my radical neck dissection had taken place in December 2013. I was originally staged 3C. I went through a clinical trial where I received Yervoy, but I was kicked out of the trial after 6 doses because I developed severe endocrine issues. I got my pathology report back today, and the lump came back malignant. The problem is that they aren't sure what kind of cancer it is.. either it's a desmoplastic melanoma (my original melanoma was NOT desmoplastic), a melanoma recurrence, or a sarcoma. For now, they're calling it a malignant spindle cell tumor because the pathologists aren't sure. Apparently I'm a weird case. I'm headed back to Vanderbilt next week, but I was wondering if maybe anyone had any experience or insight into any of this.

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arthurjedi007's picture
Replies 12
Last reply 8/14/2015 - 12:50pm

I was wondering if this is normal. I made the trip last May to do the first face to face to see the doc. No openings for anything yet. Ok. I have the little card and the next day sent an email thanking him and he responded within an hour. Ok so that is a legit way to contact this doc. The phone numbers on the card are just for the office.

So I've sent 2 such messages so far asking about available treatment and no answer so far. I called and got to talk to one of his clinical trial nurses. She said I would have to come in again and then they would see if they had anything. Is that normal? In my head I'm like what the heck. I've already done the first face to face they say we have to do so later we can check back with them directly because we are now their patient. Am I just being naive and this is normal? When she said that I'm thinking in my head to heck with you folks it would be better worth my effort to go to a different maybe bigger place I haven't been before.

I dunno. Getting in this trial stuff is hard enough without this crud. Is this type of response normal?

Sorry I'm just already frustrated and annoyed on top of the normal disease and med making me hurt and feel crummy.

Artie

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Hayden30's picture
Replies 13
Last reply 8/12/2015 - 1:15pm

Hello, 

I've recently started the Taf/ Mek combo which has immediately started shrinking my subcutaneous tumors. I realize that these drugs will most likely eventually stop working. I would love to be able to start nivolumub now while the Mek/Taf are working fast to reduce tumor burden, and the nivo will hopefully work for longevity. My doctor says that it is not possible to do these at the same time because they are not fda approved to be used this way yet, so insurance won't pay for it. Has anyone heard of someone doing the BRAF drugs while doing nivo or keytruda? And how did they gain access to this? Any info would help! Thank you!

 

Hayden

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DianaD's picture
Replies 4
Last reply 8/12/2015 - 12:59pm
Replies by: DianaD, ldub, stars

I had the mole on my back removed yesterday at the University of Chicago, and it is being biopsied.  The doctor thinks it's one mole, rather than two, because she could see scar tissue, from the excision ten years' ago, separating the two "halves."  The mole measured 7mm long, by 3.5 mm wide.  The doctor performed a shave biopsy, because it was the only way she could get the mole in one piece, and she wanted to preserve it in one piece for pathology.  She said that sometimes moles grow back, where they have previously been removed, and they look like melanoma, but they aren't.  The only way to tell is microscopically.  Finally, she said that I would receive a call regarding the pathalogy report within 2 days to two weeks.  My impression is that the longer it takes, the more likely that it's melanoma, because they perform additional tests. 

DianaD

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Banders's picture
Replies 2
Last reply 8/13/2015 - 1:13pm
Replies by: dfeng, Mat

My fellow stage 4 Braf Positve on Mek/Taf:

So I've been on the combo sine March with incredible results and little to no side effects.   Even feeling good enough to do some yard work.   About a month ago I got into some poison ivy while pulling some weeds in a part of my yard where I've gotten poison ivy rash before.

 

No big deal and it went away.  About a week ago pulled more weeds in that area (yea, I'm not very smart) and once again bumps and a rash.  However, it didn't look the same as previous poison ivy episodes and today my oncologist looked--doesn't think it's poison ivy.

It's a red rash that is oozing and it's primarily on both wrists--both of which are swollen.

 

Sorry for the length, but does anyone have any experience or thoughts?

Onc. thinks it might be a side effect caused by sun exposure.  It's right where my long sleeves that I always wear end.

Thanks ahead for anything.  Can't see dermatologist until next Monday.

 

Brett Anderson

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Mat's picture
Replies 25
Last reply 8/23/2015 - 11:08am

MPIP--what a great resource for all of us.  That said, I came to appreciate MIF's format (versus MPIP's) while attempting to "keep up" when I was hospitalized.  While we're all in this together (kumbaya), how many of Janner's responses to Stage 0 patients can one Stage IV patient read?  MIF's format segregates the posts into Stages I through IV, and there is even a dedicated section for Caregivers.  MIF's format also resets the order of the posts based on the most recent response--another good idea.  I hope that MRF will consider some of these changes for our mutual benefit.  The concerns of a newly-diagnosed Stage 0 patient just don't line up with those of an experienced Stage IV patient--and they shouldn't be lumped together on the same page.  Thanks.

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stars's picture
Replies 2
Last reply 8/12/2015 - 4:44am
Replies by: stars, dfeng

Hi - just a shout out to DFeng - how are things going? Any news to report? I understand that you are undergoing treatment for recurrence, hope things are all on track.

Stars

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cbeckner98's picture
Replies 9
Last reply 8/11/2015 - 9:18pm

Hi all,

Great to just read Artie's amazing description of the NIH visit.  I feel like I was there...  And, it was just the distraction I needed before posting my Dad's news.

As I've mentioned before, my Dad is 75 and has 5 mets in his brain and 1 in lungs.  We discovered this diagnosis less than two months ago, he did WBR for 10 days, weaned himself off steroids, and then had one course of pembro (on medicare as a first-line option!) on July 20th.  During the second week of pembro, he started to slow down the eating and then basically stopped eating and drinking around August 1 - due to the swelling of his brain mets on pembro.  We got him to the local hospital by the 5th and then they transferred him to the University of Washington yesterday.  He is on steroids now - and fairly agitated, not himself, still not eating, etc.

Long story short, we finally met with Dr. Rockhill, the gamma knife/radiation oncology specialist at SCCA this evening and he said that gamma knife is no longer a treatment option for Dad (since it would cause too much swelling).  He gave us basically two options - 1) Continue with the steroids, get Dad into a nursing home, and do hospice with a prognosis of maybe 2 months (or less).  Since he isn't really responding to the steroids and being in a nursing home would kill him (as a doctor of internal medicine/geriatics for almost 35 years, he just knows way too much about such facilities), we are not considering this a viable option.  2) The other option is a potential consult tomorrow with neurosurgery to determine if Dad's frontal lobe tumor (which is causing most of the cognitive impairment) could come out via a craniotomy.  That would still leave smaller tumors elsewhere in the brain for us to deal with later - if he makes it through the surgery and recovers.  The doctor today thought this option had a similar 2 month prognosis.  I have been reading up on craniotomies via this site - it seems like many of you out there have had them and recovery was rough, but they happen, right?  Have you been able to return to systematic/pd-1 treatment after?  How often is this used as a last-ditch effort or would the surgeon typically only do this if the survival/improvement chances were very good?

Are there any other treatment options out there which we are missing?  Dad is BRAF negative, we can't go on pembro right now with the steroids, he doesn't have an easiliy resectable tumor for TIL, they are saying that his recent weight loss makes him ineligible for clinical trials (since worse performance status).  We are down to last ditch efforts - and would like to have a bit more time (a few weeks even!) with Dad as his normal self (not him on steroids nor him with impaired cognition).  There is so much which we haven't tried - but are finding that we need to be advocates for him since everyone seems to want to check him into hospice and/or a nursing home.

Would appreciate any and all advice, prayers, etc.

Thanks,

Carrie

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arthurjedi007's picture
Replies 16
Last reply 8/13/2015 - 4:52pm
Last Thursday I was at NIH in Bethesda for TIL screening. Before going we already did a blood kit and biopsy testing. I had no antigens they wanted so the other trials were a no go.
 
Also had to be at least 14 days off nivo PD1 so last Thursday was 16 days so 2 days overdue for nivolumab.
 
Not sure how much folks might be interested in so I'll try to include a lot of my experience. 
 
Basically pretty much everyone was nice.
 
If driving you want to go to the patient entrance. Security checks the car in my case a rental and you go inside where they check your stuff then give you a day pass badge.
 
Just a short little turn from there to the main entrance where dad dropped mom and I off. He parked in P1. Not sure much about that.
 
Lots of walking required but you can avoid all the steps. If you have to be in a wheel chair that disqualifies you immediately for TIL. My cane did not disqualify me. I ended up walking all over that place that day. Not easy but suprisingly I did it.
 
First stop after the men's room was admissions. They should have sent you a map of the interior of the building ahead of time. If not it's on their website. Basically they have you sign in and give you something to read then they call your number. Then another lady brings you back to make sure all your demographic stuff is right and things.
 
Next was supposed to be Clinical. That's on the 3rd floor. But it was 7:30 when I was supposed to get my blood work and they said no one would be in until 8 so back to the first floor we went.
 
Blood work was the now typical sign in and wait for your number to be called. I guess I was nervous trying to get everything done on time and one of the patients who had been going there for years said NIH stands for Not In A Hurry. So I felt better. Then they call your number and lead you back to in my case the guys cube. As he was checking all the tests and putting labels on the tubes he noticed a urine test. So did that and back. By then he had all 12 tubes ready. Sheesh. I was used to 2 or 3. 12 was like when I was first diagnosed over 2 years ago. So yes you got to be in decent health for this. Went fine and the small bump is almost gone after 4 days.
 
Now back up to Clinical. This is where the lady I've talked to works and the nurses and doctors that are part of the TIL. They did the usual weight, height, bp, oxygen, pulse, temp thing. Met the head nurse that has 4 that do the clinical. Met one of those. Signed the trial papers. Not the papers for TIL but the papers for evaluation of being accepted into TIL is a trial apparently. If everything was done could also have new patient orientation at 10:30 or afternoon if wanted or talk to a social worker for financial aid and anything else that concerned me.
 
Next back to first floor for head MRI. Got to the place that the sign above the lady's head says CT/MRI Reception. Said I was there for my 8:30 head MRI. She looked at her papers and said she didn't have me until 9:30. I said they said 8:30. She said well they sometimes do that because of the contrast. She said I had no contrast for the MRI but I do for the CT. Here's papers to fill out and have a seat. So I turn the papers in and wait thinking she knows what she's doing. At 9:15 another lady gives me contrast to drink. Parents go to cafeteria. At 9:30 they bring me back to change into scrubs. Not easy to change my shoes on a bench by myself but I somehow did it. Then another lady that does the IV. She said I was here for my CT and I was like yes but I was also here for an 8:30 head MRI. She took me to the real MRI reception. From the other one that was through a door, down a hall, around a corner and through another door. They said I had no MRI scheduled. So back for the IV and did the CT with more contrast in my IV. Went back to the CT/MRI reception lady and questioned about the 8:30 MRI. She said that was at 8:30. I said I know I talked to you at 8:30. So back to the real MRI reception and they said they would call me if they get an opening.
 
My parents are still in the cafeteria so I'm in scrubs with no phone, bill fold or anything except a bag with my street cloths.
 
So off I go to the EKG area. That was a quick take me into a room and lay down and wait. Finally some rest. They gave me the EKG paper saying to take it back to radiology.
 
So back to radiology but I didn't want to talk to the CT/MRI lady so I asked the chest x-ray lady that the EKG person said to bring this paper to them. Her eyes get big and says no no. If you want a chest x-ray she can do that. So that was on the list too so a simple stand in front of machine. Then turn and hold on to a couple straps and both xrays done.
 
Finally everything done except head MRI. Parents not back and it is about 11am. So up to 2nd floor cafeteria and no parents so back to radiology and they just got there so back up again to cafeteria. It is ran by Eurest. Same that used to be where I used to work. Same food and tastes the same. Not that great in my opinion but I was hungry and exhausted.
 
Back to Clinical at 12:30. Wait until sometime after 1 and they take me back to an examination room. Gave the head nurse I met in the morning the paper she had given me to fill out plus the EKG paper report. Also mentioned the head MRI issue so she got on it right away. Said it was scheduled for the next morning which wouldn't work too good since we fly out the next day. So she got it set for 4 pm.
 
The next folks that came in the examination room are to check my veins. Because if I'm accepted the next visit is surgery. But 2 days before surgery these ladies hook you up to a machine for 4 hours. The needles they use are way bigger than the normal cancer needles I'm used to. This machine filters your blood so they can have something to put the surgery tcells in to help them grow. They check your veins with a blood pressure cuff and visually looking at them.
 
Next came in the lady I've been talking to on the phone pretty much every week since early May. First talked to her last November.
 
Next folks that came in was a doctor. He spent most of his morning looking through all my records. He went over my treatment history. Had me explain the cane which is more of a crutch because I don't want to fall. But like I said last winter I had to have it. He checked me out a little physically and I think asked some more questions and answered ours. He was confident I was physically ok for the treatment.
 
Next that doc and a senior doc came in. She was focused on which tumor to remove to get the best cells. Like she said they do not do major surgery because the patient cannot recover enough to do the treatment. So reading between the lines in my opinion this is something they've learned from the poor folks who didn't make it through the treatment. For my best cells would be the tumors in the fat of my kidneys but that would be major surgery so a no. Also major treatment would be the one in my skull pressing on my brain so no. They would not consider the one deep in my leg because they do not want to risk jeopordizing my already problematic walking. Now the huge one in my shoulder might have been minor surgery which is the only type of surgery they will do. But since was mostly necrotic it would not give the cells they want. Last is the super clavical tumor would be minor surgery. She felt it and it wasn't as loose as she would like but they could do it. It is also big enough because it has to be at least 2 centimeters. But it is smaller than it used to be. In my opinion it is smaller because of last winter's radiation and maybe the pd1. But since it is smaller they believe it is responding to treatment thus a no. Like she said they could get tcells but if they are going to put me through such a treatment they want to make sure they get the best cells. So again reading between the lines I think that is one reason I picked up why they have better response they only go for the best cells. Probably also something they've learned from the folks that have gone before. So no tumors to harvest so she said they would make the final decision monday when they all get together but at that point she believed it would be a no. They said the first doc would call me around 1pm monday after their meeting.
 
So back to the 1st floor real MRI reception. Signed in and they verified I already had an IV and scrubs. Waited and took 2 tylenol and went in. Typical remove glasses and leave cane. The typical small tube but at least they blow cool air in this one. Most of them get so hot I burn up so that was nice. Did the first part of the scan fine. They put the contrast in and the guy no sooner got to sit back down when I say I'm choking. I had felt a metalic taste in the back of my throat which I vaguely remember from a couple years ago they said is normal. So I swallow and all of the sudden fluid is in my throat that is too much to swallow and I'm choking. He says he's coming right in. As he's coming in he asks how I'm doing. By then I have so much fluid in my throat I can't talk so I just squeeze the ball. He says he's hurrying. Then the fluid starts filling my nasal passages so I can't breathe at all. Seems like a long time but total it was probably only 10 seconds from me saying I was choking. That guy was fast. Probably another miracle the scheduling got messed up so he was there to be fast for me. He then had me out and my back propped up going to put me on a strecther. Once I was propped up I guess it was gravity because all the fluid just rushed down. I kept my mouth closed otherwise I probably would have made a mess. So at least now I can breathe I'm just coughing and gagging as they wheel me into the corridor. Suddenly a gazillion medical people are around. They check me out and see my face and upper chest are flushed so they give me benedryl. They page the first doc that I had saw a little while ago. They are trying to decide what to do. Whether to keep me in the hospital over night or what. But since I seemed ok they started talking about finishing the scan. The tech said there was 12 minutes left but it turned out to be 18. Since my parents saw all those medical folks running they thought it was for me although there was at least a half dozen or so other people back there. They were very worried so some medical people talked to them and when I was ok they had them come see me so they knew I was ok and went back. They checked me out some more and cleared me as being ok and to never have magnavist mri contrast again. So the tech brought me to the men's room and I could see my face was still a little red. Then I got back into the tube and finished the scan. 
 
They wheeled me in a wheel chair to the main entrance. Then we waited for dad to get the car and left. What a fun day. lol
 
So today. Monday at 4pm their time I called the first doc and he confirmed it was a no. But if that one in my super clavical ever grows they want to know about it.
 
So I got a message out to my Chicago doc waiting to hear if he has an opening in any of his good trials.
 
Also called my Saint Louis doc where I'm at and already got setup to get back on my PD1 tomorrow afternoon. So only 1 week late.
 
Thinking about that trial Celeste mentioned about Keytruda plus some inhibitor pills. Also thinking about that trial Catherine posted about Keytruda plus daily IL10 injections. Also thinking about going to MSK or MDA. Especially since the t10 ablation and cement it seems I can fly some granted there was almost no turbulence and very soft landings. Certainly going to have to pray for what to do next.
 
So that's it. Maybe some tidbit in there will help somebody sometime. I dunno.
 
Artie
 

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Hayden30's picture
Replies 3
Last reply 8/10/2015 - 11:15pm
Replies by: Bubbles, Hayden30

Hello, 

im new to this forum and have been stage IV since February. I've had mets all over, lungs, eye muscle, bone, brain and subcutaneous. I tried yervoy which didn't help, and my doctor put me on the combo of mekinist and tafinlar because I'm BRAF positive. I'm just curious why I would do this versus just Zelboraf like other people in my position. Does one method work better? I trust my doctor, I'm just wondering if one is proven to work better or is newer. I can't seem to find the info when I research those drugs. I'll take any word of encouragement also!! It's been a rough few months. 

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anitarivera's picture
Replies 5
Last reply 8/13/2015 - 12:01pm

I thought I recently posted, but can't find my original post. I'm new here, diagnosed last October with stage 1b melanoma, had a WLE and no further treatment. I consider myself extremely lucky.

my husband and I want to have another baby but no doctor will give us a straight answer about the possibility of the pregnancy causing melanoma to rear its ugly head again somewhere on my body. We are scared/confused and would appreciate anyone's experience or knowledge with regards to this topic.

thank you!

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