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.

Expand/ Collapse Topic
 
Replies By
View Topic
mikvahnrose's picture
Replies 1
Last reply 1/7/2014 - 9:39am
Replies by: Janner

I got a shave biopsy of a suspicious mole about a month ago. December 2nd

The results came back that it was a Benign Compound Melanocytic Nevus. Read by a dermatopathologist so it makes me feel more confortable that it is not cancerous.

Well i now know that the mole wasnt cancerous, but within a month it has reappeared!!! Not the same size as it was before, it's smaller, but it came back. Is that normal?? Is that a concern that i should get it checked out again?

Login or register to post replies.

Hi all, posting on behalf of my wife.

My wife was diagnosed barely in stage 3.  1.01mm on her leg, 6 cells found during biopsy.  She was not a good canidate for Interferon so we investigated and eventually ended up with the Dabrafenib and Trametinib on prescription.

She has been taking them for about 11 days.  She's had a few side effects, a rash, sickness but nothing extreme.

I am wondering if this is the worst it gets or is there a peak period for side effects or perhaps they just show up at any time.  Keep in mind this is all for a seemingly healthy person.

Thanks.

Login or register to post replies.

Anonymous's picture
Replies 14
Last reply 1/7/2014 - 9:01pm
Replies by: Anonymous, Vermont_Donna, jmmm, POW

Ok, need help.  This is really confusing.  My husband is planning on starting short term disability from work on Monday.  His job is NOT protected by the FMLA.  We have to get the paperwork filled out by the doctor and are not quite sure of the best answers.  We were thinking that it would be best to say unknown about returning back to work, so that he could get his 12 weeks pay and maybe they will pay the health insurance premium instead of making us pay COBRA right away.  He would also like to keep his job if possible, just in case of a miracle.

But, then on the otherhand I heard that you should apply for SSDI right away, even if you are on short term disability.  How can you say that you might return to your job on one form and then a week later fill out another that says you are permanantly disabled? 

Also, it's quite possible that they will just lay him off during the 12 week short term period right?  Has that happened to anyone?  Then what happens?  Can they take away your long term disability plan that you paid for when you were employed now that you are no longer an employee?

Do you ever just get to skip short term disability and go straight to long term disability? I'm not talking SSDI, but Unum Long Term Disability? There seems to be some protection there.  It would help him with keeping his life insurance too, then he could get a premium of waiver and it wouldn't matter about not having the job to keep the benefits.  He paid for the life insurance, but it's through the company with Unum. If you could just skip the short term disability that would seem safest.  Everything is though Unum and work.  We don't really trust anyone and no attorneys around here know the answers. 

The best idea seems to be get approved for short term disability, apply for SSDI, then get approved by Unum for LTD and get a premium of waiver. Plus do all this before you may get laid off/fired or whatever.  Am I on the right track?

Sorry, this is a head full.  What can I say my head is full!  Not even sure if I made much sense.

Login or register to post replies.

Hi all, posting on behalf of my wife.

My wife was diagnosed barely in stage 3.  1.01mm on her leg, 6 cells found during biopsy.  She was not a good canidate for Interferon so we investigated and eventually ended up with the Dabrafenib and Trametinib on prescription.

She has been taking them for about 11 days.  She's had a few side effects, a rash, sickness but nothing extreme.

I am wondering if this is the worst it gets or is there a peak period for side effects or perhaps they just show up at any time.  Keep in mind this is all for a seemingly healthy person.

Thanks.

Login or register to post replies.

Replies by: Mat, aldakota22

I am so proud to be in this trial, for three years now. We must remember those first brave ones, who died from BRAF alone, and the courageous Dr. Flaherty and his crew, and the FDA itself, which allowed MEK inhibitors to be given at the same time. They saved my life and so many others, and those to come. I am just overwhelmed with gratitude.

The history of the world is the battle between superstition and intelligence.

Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 1/9/2014 - 8:49am
Replies by: Tina D

Ok ladies, kind of an akward question here and it may be that no one has any answers or ideas, but here goes:

I started the BRAF/MEK combo about a month ago and have been on birth control pills for over a decade. Before starting I was told (by about 6 different doctors, nurses and pharmacists) that the new medications would make my birth control less effective and it was imperative that I use a barrier method as backup. OK. Fine.

I started the new meds about the same time as I started a new pack of birth control. I had some minor spotting mid way through the pack which I attributed to the "less effectiveness" but no other issues. Anyone who's ever been on birth control knows one of the perks is very predictable reliable menstuations. I was supposed to have my menstual period this past week and... nada. I've had nothing. I started a new pack this weekend, but I've never not had a period in the almost 20 years I've been on these pills. For those of you thinking I might be pregnant- unless it's an immaculate conception I'm not... trust me. I know exactly how long it's been and if I'm pregnant it's either because some magical baby fairy managed to outsmart biology, or the government is doing more than reading people's e-mails. 

Not sure if anyone out there has had any kind of experience with these drugs and birth control pills, but I thought I'd put it out there just in case.

Login or register to post replies.

Hstevens0072's picture
Replies 8
Last reply 1/9/2014 - 8:50am

I don't usually post but I do read the board.  I want to let you know that I am in the MK 3475 PD1 clinical trial and just had my third set of scans at the end of December.  I am very fortunate, my largest tumor is 82% smaller and the others have resolved.  No new disease.  I haven't had any trouble with side effects.

i know many people read these posts looking for hope so I wanted to share.

Holly

"The key is don't go to the funeral until the day of the funeral" ~ Valerie Harper

Login or register to post replies.

sFELDMAN's picture
Replies 5
Last reply 1/9/2014 - 10:15am
Replies by: Pink, Tina D, BrianP, Mat, SABKLYN

Hi everyone. I am in  immediate need and hope you can help me. I am in immediate need of a PD 1 trial. Does anybody know where any of them are being held I live in Florida but am willing to go and travel anywhere.    I have previously been on Braf/Mek  16 months did well,  then Yervoy....slowed it down but need pD1.   Thanks to all my fellow warriors for your help.  G-D bless

 

Login or register to post replies.

Bob B.'s picture
Replies 3
Last reply 1/9/2014 - 11:25am
Replies by: lsmith - MRF, Anonymous, BrianP

it's been awhile since I visited.   The site has changed.

 

How do I "search" a previous Topic?

 

Thanks!

 

Bob B.

The Only Good Legend is a Dead Legend.

Login or register to post replies.

Anonymous's picture
Replies 7
Last reply 1/9/2014 - 12:14pm
Replies by: POW, Anonymous, Kim K, Momrn5
When Is a Completion ALND Necessary in the Presence of a Positive Sentinel Node?

 

Eur. J. Cancer 2013 Dec 10;[EPub Ahead of Print], A Suyoi, SK Bains, A Kothari, M Douek, O Agbaje, H Hamed, I Fentiman, S Pinder, AD Purushotham

Research · January 02, 2014
 
 

TAKE-HOME MESSAGE

  • This retrospective study from the UK examined 155 patients undergoing completion ALND after positive sentinel lymph node biopsy. Patients with macrometastasis (> 2 mm) in the sentinel node had a 35% likelihood of further axillary disease on completion surgery vs a 10% likelihood in those with micrometastasis (< 2 mm).
  • The authors suggest that this adds further evidence supporting the avoidance of completion ALND in patients with micrometastases.

- Richard Bambury, MD

ABSTRACT

Background

The management of the axilla in the presence of positive sentinel lymph node (SLN) remains controversial. Many centres forgo completion axillary lymph node dissection (cALND) in the presence of micrometastatic disease. The American College of Surgeons Oncology Group (ACOSOG) Z0011 trialists argue for extending this to macrometastasis. The aim of this study was to correlate tumour burden in SLNs with that in the residual lymph node basin to determine the likelihood of residual disease in patients with micro- and macrometastasis in the SLN.

Methods

Patients who underwent cALND following a positive SLN were analysed for histopathological features of the primary tumour and burden of axillary disease.

Results

Of 155 patients, 115 (74%) had macrometastases and 40 (26%) micrometastases in the SLNs. Residual axillary disease was detected in 55/155 (35%) patients with macrometastases and 4/40 (10%) with micrometastases. Generally, with increasing size of metastasis in the SLN there was an increasing risk of further disease in residual lymph nodes. Logistic regression analysis showed increased odds ratios for further disease for all groups when compared with the <2 mm (micrometastasis) SLN group.

Conclusion

Patients may be advised to forgo cALND where the SLN contains isolated tumour cells or micrometastasis. Recommendations for proceeding to cALND can be based on the size of metastasis in the SLN, which relates to the risk of further disease in the residual axillary lymph nodes and subsequent regional recurrence.

European Journal of Cancer
When Is a Completion Axillary Lymph Node Dissection Necessary in the Presence of a Positive Sentinel Lymph Node?
Eur. J. Cancer 2013 Dec 10;[EPub Ahead of Print], A Suyoi, SK Bains, A Kothari, M Douek, O Agbaje, H Hamed, I Fentiman, S Pinder, AD Purushotham

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 1/9/2014 - 3:11pm
Replies by: Anonymous, Janner

Can anyone speak to the topic of "compassionate use", perhaps using ipi as an example?  In other words, how does it work?  How is announced?  Is there still exclusionary criteria?  Is it confined to certain trial sites?  I'm not looking for predictions on when compassionate use for PD-1 will be available--rather I'm looking for info on what compassionate use might look like if and when it becomes available.  Thanks.

Login or register to post replies.

Maureen038's picture
Replies 14
Last reply 1/9/2014 - 5:38pm

My husband just had scans from the BMS CA209-004 study of 3mg/kg of yervoy and 1 mg/kg of nivolumbab. There is nothing new and his tumors have shrunk almost 50 percent!!! We are so thrilled, but we are still dealing with the side effect of hemolytic anemia after the third infusion. He has been on steroids for almost a month and while it's been tapered down from 100mg to 30 mg he can't get on the maintaince schedule of nivolumbab until his steroids are stopped. Yesterday, we were at UPMC with Dr. kirkwood and his glucose level went very high so they had to give him insulin twice. We are hoping to get all of this under control soon and he needs to see an endricologist now.

i wanted to post this to give people hope. This is the third trial he has been on, so please don't give up. He had HD interferon and he had the ACT at NIH this summer. The ACT stopped the alarmingly quick growth of lung mets, but unfortunately a few mets kept growing a few mm. Each of the trials have taken a toll on his body though so he is eating very healthy foods, exercising and enjoying each day! You truly learn what is important in life. We wish everyone here the best!!

Maureen

Login or register to post replies.

Pink's picture
Replies 4
Last reply 1/9/2014 - 9:10pm
Replies by: Pink, Bubbles, UrsulaZ, POW

Went to Moffitt yesterday met the neuro and radiologist new MRI shows 4small lesions all on the right side.of my brain   I got fitted for the lovely plastic mask and start treatment on ties, we'd, Thursday and Friday. The following week start Ipi, here is hoping they all work. The trek of 1 45 min each way is tiring but I feel I am getting the best care there.

Login or register to post replies.

Yvonne.D's picture
Replies 4
Last reply 1/10/2014 - 12:32am
Replies by: Yvonne.D, Janner

I have just been diagnosed with Melanoma and looking for some help with my report. I need to stay positive, strong and informed for my 5 month old, 6 1\2 year old and my husband and hoping someone can help. If anyone can help me explain my report for me. Also if anyone has been through what is close to my diagnosis I would greatly appreciate your comments or experiences and what treatments you have had. Everyones cases seem to be different in some way so even any thoughts would be wonderful.

Here goes. Biopsy Report.

Surgicial incision with 1 cm MA of skin. Left thigh. Superficial Spreading Malignant Melanoma. Level 2 invasion, vertical height 0.47- No ulceration. Mitotic index is one mitosis per 1 mm squared.

On November 18th I had an appointment with the Dermatologist who looked at my mole. She then made an appointment on the 27th to have a biopsy. On the 27th she did a shave biopsy. Apparently she was ruling out 3 possibilities. She said make an appointment to come back in for the results which was going to be for tomorrow however my family doctor called to tell me last thursday to tell me that it was Melanoma. I called my dermatologist right after that tryin to get in earlier to see them for the results which was now really just for the specifics on how bad it was as my family doctor was only able to tell me it was superficial. So I was a mess that day thinking my children and husband were going to be without me very soon as I have only ever heard that melanoma is a death sentence and was not educated at all about melanoma. I don't think I have read as much as I did over the past 5 days about other peoples stories and information about it. Thank you to everyone who posts. I did get in yesterday for the results because they had a cancellation. I have an appointment on December 31st to have a surgery. I have to call the nurse back tomorrow just to discuss a few more details about the report as I was just listening as she went over specifics and didn't know the right questions to ask or more so couldn't. Now I have a grip of myself enough to talk and be the best informed and educated patient I can be hopefully with a little help for you guys.

I do suspect that I have more on my body as well. The one they diagnosed was brushed aside saying it looked fine by my family doctor as well as by my OB after I asked what they thought about it. I cannot say enough to other people to go with your gut and get that referral if you suspect it is not normal. They are both wonderful doctors and could not say a bad thing about them, after all they are not a dermatologist.
I have an appointment in the New Year to do a full body with my dermatologist.

I am in Southern Ontario and have a few cancer hospitals from a 30 min drive as far as a 1hr 30min drive so I am feeling positive that if need be I can get the care I need very close.

I was going through web pages trying to figure out my diagnosis and think I may be a T2A as of right now please correct me if wrong. Once I have my surgery that may change as the nurse said they didnt get it all when hey shaved it and could be bigger.

Your thoughts, suggestions, anything would be greatly appreciated.

Yvonne.

Login or register to post replies.

SaveMySister's picture
Replies 13
Last reply 1/10/2014 - 8:15am

Hi all,

I haven't posted since shortly after my sister passed away less than one month after being diagnosed with stage 4 melanoma last July. Being that she had no skin abnormalities, I am wondering if we all missed any other warning signs.  If you get a melanoma lesion on your lung, would it cause breathing difficulty? She had a small 'mass' on her lung that they called a cyst, which was detected about 1-1/2 months before her diagnosis. She had had breathing problems which were assumed to be allergy related back in 2011, which never really got under control completely.  (They removed polyps from her sinuses but kept putting her on steroids.)  She was tired a lot and became a caffeine drinker.

Her melanoma was discovered when a large tumor was removed from her lymph node. An MRI of her brain shortly thereafter revealed 11 lesions. I guess what I am trying to figure out, is that are there any warning signs that I can look for to try to catch this very scary form of melanoma that shows up internally? I don't want to spend my 50's and 60's being paranoid that I will be dealt the same fate as my sister. I am getting my skin checked every 6 months, but in my case that may not be enough.

Thanks!

Login or register to post replies.

Pages