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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Coach337's picture
Replies 11
Last reply 4/22/2016 - 12:35am

Stage 3c.

Partial lymphadenectomy of groin.

 

Started adjuvant treatment with Yervoy.  Was fine for four days, then had a few minor hiccups: itchy eyes, blurry vision, fever, chills.  Nothing too serious.  Then, out of nowhere - bam!  Developed colitis which hit me hard for about 5 weeks.  Doctors prescribed prednisone (and diphen/atropine), and continued to increase my dosage until it kept the dysentery in check.  

As soon as the colitis became somewhat manageable, the steroids were SEVERELY kicking my butt: insomnia, weight gain, insatiable appetite, muscle fatigue, cramping, and headaches.

So basically, that's where I'm currently at.  Ramp up the Prednisone and I get those nasty side effects (but no colitis), or the reduced prednisone dosage (with fewer side effects) but the colitis returns.  

So frusterated!  I haven't slept more than 3 hours at one time in over a month, and it's slowly starting to take its toll on me.

Has anyone experienced anything similar, and what eventually got you through it?

 

Thanks!

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Bubbles's picture
Replies 2
Last reply 4/21/2016 - 10:32pm
Replies by: Charlie S, jennunicorn

With more folks gaining access to the anti-PD1 products Pembrolizumab (Keytruda) and Nivolumab (Opdivo) more folks are asking what it actually is.  I've posted this before and it is rather rudimentary....but some folks report being helped by it....so here you go:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

If you put anti-PD1 in the search bubble on my blog you will probably find more stuff than you ever wanted to know....but if it helps...

Yours, c

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/21/2016 - 8:02pm
Replies by: KimberlyVU, Carly1974, Anonymous, Janner

Hi Everyone!  I recently received a diagnosis of melanoma from my dermatologist and had a follow-up appointment with a general surgeon.  Even prior to the diagnosis, I wasn't entirely comfortable with the dermatologist (it was my first appointment with her), as she only looked at moles I pointed out and became preoccupied with removing the mole that came back as being melanoma to the point that she didn't examine any of my lower body.  She recommended a general surgeon to me, who I followed up with last week and recommended an excision surgery.  I feel like neither doctor was very thorough, but I could also be to blame as I was pretty uninformed going into my appointments.  In my defense, the dermatologist made it sound like the surgeon was just going to do another quick procedure in the office the day of my appointment.  I'm planning to find another dermatologist to follow-up with, but i'm wondering if any other test/procedures should be being considered at this point.  I'm also wondering if it's wise to follow-up with someone who specializes in melanoma rather than just a general surgeon.  Sorry - I'm feeling overwhelmed by information on the internet and underwhelmed by the information given to me by doctors, thus far.  Below are the notes on my diagnosis from the dermatologist:

Microscopic description: The epidermis shows irregular acanthosis with broad rete ridges.  There is an increase in number of basal melanocytes with dense melanin pigment.  Aggregates of melanocytes with enlarged pleomorphic nuclei are present in papillary dermis.  They are occasionally seen in lower epidermis.  A dense lymphoid infilitrate is present below the above changes.  

MART-I stain is positive in lesional cells.

Pathological diagnosis: melanoma, 0.76mm

Any advice, information, or insight is greatly appreciated! Thanks in advance!

 

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MELK's picture
Replies 3
Last reply 4/21/2016 - 7:50pm
Replies by: MELK, gm77, Momofjake

Hi All, 

This is my first post. 

I was misdiagnosed with stage IV breast cancer in August 2014, and put on chemo for 4 months. This misdiagnosis was because I had a tumor in my breast and it is very unusual for melanoma to metastasize to the breast. I also had lesions in my lungs, liver and bones. 

I was given Braf/Mek combo in January of 2015. It worked. Lots of my tumors were gone, only a couple in the liver remained. I was feeling really well. I had been doing lots of bush walking and going to the gym. I had gone back to work and was feeling great. 

In January, 2016, I went to the gym and the next day I thought I must have overdone it, as that’s what the pain felt like. After three days though, the Panadol were not working. I had really strong pain all around my rib cage, in my legs and my arms. I saw a GP to get some stronger pain killers and found out I had very low oxygen levels, so I went to hospital. 

My bloods were quite alarming. My haemoglobin and platelets were very low and my LDH reached 21,000. My oncologist and his team were puzzled. I also had some fluid on the lungs, which I had drained and analysed for any infection or cancer cells. No infection or cancer cells found in the fluid. I also had an MRI of my spine and a biopsy of my bone marrow. The cancer had gone into my bone marrow. At first my Oncologist thought it could be a completely different cancer, but it was determined it was the melanoma. Apparently it is very unusual that melanoma metastasize into the bone marrow. I not only had the cancer spread to my bone marrow, but I had more tumors/lesions in my liver and many in my thoracic and lumbar vertebrae and pelvis. I was on high doses of Oxycodone and I had to have several blood and platelet transfusions. Then I was put on Keytruda.

After a week or so and a few more blood transfusions, my bloods came right and I went home from hospital. I was there for 21 days. I was so not expecting “getting resistant” to look like that.

I am having some success with the Keytruda, although experiencing some auto immune of the liver and we are dealing with that presently. 

Mel 

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Liisa's picture
Replies 3
Last reply 4/21/2016 - 1:52pm
Replies by: landonm, Liisa, Janner

Hi everyone!

I'm new to this forum, have been reading it for a while and decided to join since I haven't found anything alike in my native country (Finland). This seems like a wonderful place to get support and information.

I was diagnosed about a month ago with a melanoma in situ. It was in a new black mole at the back of my tigh a little above the knee. I've had the WLE done a week ago with 1 cm margins, haven't gotten the results yet. The cut has healed ok.

Now I've been experiencing slight pains in my tigh and groin, and I think I can feel a lymph node in the groin too. This pain started already after the original biopsy and has been coming and going ever since. I asked my doctor and he said it's nothing to worry about, and today I called an oncology nurse to ask again. She also said I shouldn't worry and that it's most likely just a reaction to the surgeries. I understand that melanoma in situ should not have spread to the lymph nodes and I'm trying really hard to believe that. But you probably know how the fear gets to you:( 

So I guess I wanted to ask if anyone has experienced similar kind of symptoms? Should I just wait and see how it goes or go to the doctor again. He practically laughed at me when I told about my concerns and said that don't you worry, this has been now dealt with. I sure hope so!

 

Have a nice day everyone, 

Liisa

 

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Anonymous's picture
Anonymous
Replies 28
Last reply 4/21/2016 - 6:27am
Replies by: UriahPH, jennunicorn, MoiraM, casagrayson, AllysonRuth, Anonymous

I looks terrible I'm so scared I literally can't breathe! 

 

Its irregular, has dark pigment. I've just seen a doctor who referred me to a Derm. She said she's not too worried about it but how can she not be with its characteristics?

 

Here are some images.

http://imageshack.com/a/img922/3856/4yfOm7.png

http://imageshack.com/a/img921/3748/GHz1SA.png

 

by looking at it, what are the chances of this not being Melanoma?

 

 

 

 

 

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/20/2016 - 11:39pm
Replies by: Janner

Hi All,
I was diagnosed with superficial spreading melanoma on my shoulder blade/ upper right back almost four years ago. I had the wide incision and no other treatment. My scar has been pink however recently I noticed the top is turning brown. There us a brown line going halfway down the scar line with a small brown spot a little below the line
There is no pain or bruised feeling when I press on it. My question is for people that have had a reccurance what did it look like? I have been watching it since Saturday. It does not seem worse but it's not going away either. The only other odd symptoms I have is an enlarged thyroid in my neck (I am seeing s specialist for that tomorrow). Could the two be connected? I know the chances are small but should I be worried?

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Hello and best wishes to every member on this board and their families.

I thought an update on my sister might be mutually helpful. Here's a quick rundown:

- started on Taf/Mek combo in Feb. - I posted then about fevers and other side effects she was experiencing

- she actually only lasted 2 weeks on a full dosage before side effects caused interruptions to treatment >> tried everything - dose reductions, stop & treat with steroids then resume again trials, Taf only at half dose, no Mek - none of that worked  

- the culprit that ended treatment was the rash she developed - a grade 3 and also considered an allergic reaction  (rashes seem particularly complicated) - her rash also did not respond to treatment, none of at least 3 creams they tried, anti-itch drugs and then heavy Prednizone 

- flipside of that is that the drugs were amazing - they were absolutely causing the mel to retreat and disappear - we were devastated when she had to stop but the plan then became to start her on ipi/nivo combo asap

- 4 weeks later, first signs that mel was on the move again became apparent

- 5 weeks later, first CT scan and, even with new growths appearing rapidly, her doctor was thrilled with the results as they showed huge reduction in the previously known tumours - there were new ones also, several smaller in her liver, (one bleeding in her kidney), one old that was larger (lung)  

- good news was that CT results did not reverse plan to start immunotherapy

- first infusion was last Thurs. (Apr. 14) - she was immediately extra fatigued and slept on and offer for the remainder of the day

- day 2 fever and headache (using acetominophen), appetite really dropped, some nausea (takes odazetron)

- has remained as above since, on and off - headache, fever, vomited today but this was only day 6

- several of her growths went crazy for a couple of days but one has already started going down again - have read on here that it's quite common - they are sore and painful though

- so far no rash, which is great!!

- I know it's early days yet - treatments are 3 weeks apart, first 4 with the ipi, then onto just nivo -- we also won't be surprised if she isn't able to complete all four 

She is really down about her syptoms but I believe it's evidence that the drugs are working. I am so thankful she is able to get this treatment and I have every confidence that she's going to have a great response!! I often wonder about the Taf/Mek >> if she might not have been a "complete responder" if not for the rash/allergy. 

If anyone has any suggestions on how I can keep her spirits buoyed, I'd welcome them! It's not so much that she's experiencing side effects - what really has her down is the overall effect of bad, aggressive cancer followed by aggressive drug treatments - she went from being an active gym member last fall to the point where she was issued a walker last month.

In just a few months, tumours invaded all skin levels, many bones and multiple organs, treatment kicked ass, which one doc told us made your body feel like it was "running a marathon" but then caused extreme side effects, steroids caused extreme and rapid muscle loss, her energy level went from pretty good to almost 'nil. She's very limited in what she can do and where she can go ... and sick and tired of being sick and tired ... 

Onto some reflections ... I've been on here all day - it's just that kind of site where the knowledge-bank can keep you for hours. It's been my number one source for everything I have learned about my sister's condition. I think I would be fearful for her all the time if it wasn't for the material I read here.

A couple of posts struck me today - one from Janner about being Stage 1 and still continuing to post and another discussing the new 5-year OS results just released.

The "resonance" of these two posts hit as I was deep in my research efforts and reading posts that were made back in 2011 and 2012 ... and it dawned on me that none of the names of the posters were familiar to me. I actually found myself going to the profiles of some of these people and looking for updates .. and finding nothing. I cried a few tears over this today ...

I'm so glad people like Janner continue to post. I wish others did, if they are still out there (Ed in Ottawa - I read everything you post - thank you!!). And I'm really grateful that, if mel had to invade my sister's life, it happened now and not five years ago. It does seem that hopes and promises are turning into reality.

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Mark_DC's picture
Replies 20
Last reply 4/20/2016 - 4:06pm

Dear Forum members,

Thank you for creating this forum -- have been reading the last few weeks since my Stage III diagnosis and surgery to remove melanoma on my leg (on crutches and home two weeks). Sad that I have to join you (!) but also amazed at your stories and also all the help you are offering each other. Through you I have learnt so much about this disease (Celeste's guide to all the abbreviations helped lots, she may not have realised, plus others' links to videos and talks).

I am sorry to start my first post with a question, and not with cheering on fellow sufferers as they await their scans, have been praying for them and thinking of them though, the last few weeks. Has been hard for me to write and I have been putting this off, but I need your help and respect your advice.

Melanoma on my lower left leg in 2014 recurred in February 2016 (am now T2aN2cM0). Fortunately my SNLB was negative both in 2014 and again in February. Had not expected this to recur :( Was assuming that it had been removed in 2014, odds were in my favour I thought! Now because it has recurred I am considered IIIB, although my lymph nodes are negative thankfully and no mets detected on CT and MRI. Live in DC and am being treated by Dr. Gibney (and I think Dr. Atkins too).

My question is, what should I do now? Should I take adjuvant therapy? I have been offered:

- Clinical trial between pembro and interferon (both adjuvant)

- Ipi as adjuvant

- Watchful waiting

It is very hard for me to decide. To me, the downside of the clinical trial is the interferon arm -- forum members seem to be pretty negative about this, about its efficacy and the side effects. What if I get placed on the interferon arm? Yet I know some of you are taking this route. And if it helps, then it could be worth it. Until recently, I would have preferred a clinical trial vs. ipi but this is not available. I understand there is a trial of pembro vs placebo, but not close to me (I could travel if needed, and know that many of you do).

I was going to take ipi as adjuvant, but when I sought a second opinion at the doctor noted the side effects, including in the worst case death (1 percent). The second opinion also cautioned me that side effects from ipi (maybe even from pembro) could limit my clinical trial options in case I move to Stage IV, which I kind of fear is likely given my progression from I to III. I might be prevented from taking some combination therapy clinical trials at Stage IV. I know some of you are taking this route though, so would welcome your advice, why did you decide this over watch and wait?

Final option seems tempting, my job involves international travel, and taking immunotherapy would kind of rule this out according to my second opinion doctor. If things flare up he thinks I need to be close to my doctor.

But I also dont want to duck out and take the "easy" option. I have a good job and I will not be penalized for taking treatment, I do not have to travel, it will mean taking a back seat for a while, but thats OK, my job will want me to do whats best for my health. I should make every effort to fight this thing and ideally kill it off. But is there a good way to do this? Do the medicines really work for III (my second opinion doctor suggested the immunothrapies worked better against solid tumours than cancerous cells in the bloodstream, because the tumours themselves have immune cells or something like that). Should I instead watch and wait, hope not to go to Stage IV, but if I do go to IV then try to fight it like many of you on this forum have? Or should I be pro-active now (but only if it helps, right?)

I meet my doctors on Wednesday and we need to make the decision then or shortly thereafter. I am very confused and would welcome any advice. They seem to recommend the clinical trial, but I am not so keen on interferon although on the plus side it does seem a known quantity -- I might be depressed for a year and buy one year, but side effects not disastrous, right?

I again thank you for reading this and also the many useful posts on this forum, and also the amazing stories, happy and sad, which always move me.

Good luck

Mark

 

 

 

 

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Patrisa's picture
Replies 2
Last reply 4/20/2016 - 9:15am
Replies by: Patrisa, Polymath

Hey there fellow fighters!!!

Can anyone on Keytuda please respond... My father is on the (hopefully) miracle drug for 12 weeks now and he seems to be doing great... His two visible tumors (under the skin surface) are almost completely gone (bigger one was 5x5cm and the smaller one has dissapeared), he also has some mets in his lungs...

Since his first pet scan in May, we are starting to feel a little scared... Can we hope, due to the fact that he responded so well to keytruda 'on the outside', that his mets in his lungs have shrunk/dissapeared as well?

I know that no one can tell anything for sure, but what do you think? 

Thanks to every one who responds....

Be brave and belive in miracles!!! 

 

Patrisa

 

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Roni25's picture
Replies 14
Last reply 4/20/2016 - 5:09am
Replies by: Anonymous, Roni25, Polymath, MoiraM, UriahPH, mkirkland

Hi, I'm new here, I'm 35 and live in Scotland in the UK and I am so sick with worry. Over two years ago I discovered what I thought to be an itchy sore mole just at the top of my rib cage. I thought it was being annoyed by by bra but went to the doctors and he didn't think it was a cause for concern but referred me to the dermatologist. When my appointment came through I stupidly cancelled it as it was no longer bothering me. Now just the other day I noticed it was bleeding and looked rather frightening, it looks like a nodular melanoma, it's about 5mm across and is slightly raised, it's not flat. I went to the doctors yesterday and she didn't seem to have huge concern but I don't think she was grasping the seriousness of nodular melanoma, I think she may have thought I meant a normal melanoma (which is of course also serious, I just mean for the fast spreading of nodular) (I was in a bit of a mess during the appointment and don't think I explained myself properly) what's making it worse is that I have a swelling in my neck on the left hand side, it looks to me as its my Virchows node (which isn't good) but the doctor said it was a strong or over pronounced neck muscle (it's never been like that before) When you press it it doesn't feel hard. I'm sometimes getting a tightening sensation in my neck and under my armpit. I also have a swelling in my arm crease on the opposite side of the elbow around my Supratrochlear lymph nodes, this is quite soft and hurts when pressed, the doctor said it was just fatty tissue. Added to this I have pins and needles quite often going up and down my arm on the left side and sometimes my leg. I am so scared that this is metastasised melanoma and don't know what to do. 

 
What did other people nodular melanoma feel like? I've done the firm test and I'm not sure what I'm looking for, how firm was it? Is it really hard feeling. Did the surface of yours feel like a spot? Do they feel smooth?
 
Thank you for any help or information anyone can give me.
 
Ive been back to the doctors and I've had bloods taken. This doctor agreed it wasn't a muscle that was sticking out on my neck and that my neck felt spongy where it was swollen 

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Hello and best wishes to every member on this board and their families.

I thought an update on my sister might be mutually helpful. Here's a quick rundown:

- started on Taf/Mek combo in Feb. - I posted then about fevers and other side effects she was experiencing

- she actually only lasted 2 weeks on a full dosage before side effects caused interruptions to treatment >> tried everything - dose reductions, stop & treat with steroids then resume again trials, Taf only at half dose, no Mek - none of that worked  

- the culprit that ended treatment was the rash she developed - a grade 3 and also considered an allergic reaction  (rashes seem particularly complicated) - her rash also did not respond to treatment, none of at least 3 creams they tried, anti-itch drugs and then heavy Prednizone 

- flipside of that is that the drugs were amazing - they were absolutely causing the mel to retreat and disappear - we were devastated when she had to stop but the plan then became to start her on ipi/nivo combo asap

- 4 weeks later, first signs that mel was on the move again became apparent

- 5 weeks later, first CT scan and, even with new growths appearing rapidly, her doctor was thrilled with the results as they showed huge reduction in the previously known tumours - there were new ones also, several smaller in her liver, (one bleeding in her kidney), one old that was larger (lung)  

- good news was that CT results did not reverse plan to start immunotherapy

- first infusion was last Thurs. (Apr. 14) - she was immediately extra fatigued and slept on and offer for the remainder of the day

- day 2 fever and headache (using acetominophen), appetite really dropped, some nausea (takes odazetron)

- has remained as above since, on and off - headache, fever, vomited today but this was only day 6

- several of her growths went crazy for a couple of days but one has already started going down again - have read on here that it's quite common - they are sore and painful though

- so far no rash, which is great!!

- I know it's early days yet - treatments are 3 weeks apart, first 4 with the ipi, then onto just nivo -- we also won't be surprised if she isn't able to complete all four 

She is really down about her syptoms but I believe it's evidence that the drugs are working. I am so thankful she is able to get this treatment and I have every confidence that she's going to have a great response!! I often wonder about the Taf/Mek >> if she might not have been a "complete responder" if not for the rash/allergy. 

If anyone has any suggestions on how I can keep her spirits buoyed, I'd welcome them! It's not so much that she's experiencing side effects - what really has her down is the overall effect of bad, aggressive cancer followed by aggressive drug treatments - she went from being an active gym member last fall to the point where she was issued a walker last month.

In just a few months, tumours invaded all skin levels, many bones and multiple organs, treatment kicked ass, which one doc told us made your body feel like it was "running a marathon" but then caused extreme side effects, steroids caused extreme and rapid muscle loss, her energy level went from pretty good to almost 'nil. She's very limited in what she can do and where she can go ... and sick and tired of being sick and tired ... 

Onto some reflections ... I've been on here all day - it's just that kind of site where the knowledge-bank can keep you for hours. It's been my number one source for everything I have learned about my sister's condition. I think I would be fearful for her all the time if it wasn't for the material I read here.

A couple of posts struck me today - one from Janner about being Stage 1 and still continuing to post and another discussing the new 5-year OS results just released.

The "resonance" of these two posts hit as I was deep in my research efforts and reading posts that were made back in 2011 and 2012 ... and it dawned on me that none of the names of the posters were familiar to me. I actually found myself going to the profiles of some of these people and looking for updates .. and finding nothing. I cried a few tears over this today ...

I'm so glad people like Janner continue to post. I wish others did, if they are still out there (Ed in Ottawa - I read everything you post - thank you!!). And I'm really grateful that, if mel had to invade my sister's life, it happened now and not five years ago. It does seem that hopes and promises are turning into reality.

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My mom was diagnosed with melanoma about two years ago. A few months ago, I was diagnosed with juvenile melanoma. We are both constantly worried that we might miss future issues.

I am studying Computer Engineering and have been inspired to gather a team of people to develop some way to monitor skin changes indicative of Melanoma. Often times, I have noticed that I tend to be inconsistent with monitoring my own health. Furthermore, it seems that doctors have a hard time noticing minute changes on the skin during the few times I visit within the year. I want to change this and I need everyone's help

Below is a link to some questions that we’ve created and we need the input of as many people as possible. Answering any of the questions will help us with the development of the technology.

 

We greatly appreciate any input.

 

ChrysalisScience

or

https://docs.google.com/forms/d/1AHnzlU_Y_Rz3qN243pbqHR0xBRLpXKu6o5lYJbA...

 

Thank you!!!

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Bigdaddy5's picture
Replies 11
Last reply 4/19/2016 - 9:41pm
Replies by: BrianP, Bigdaddy5, Anonymous, Bubbles, kylez, jenny22

 

Hi:

I had my excision surgery to remove the remants (post-shave-biopsy) of a 2.6 mm tumor from my torso on 2/24.  Officially stage IIa.  We requested that they genetically test the tumor for BRAF or NRAS mutation and the results took about a month.  I was confirmed to have the NRAS mutation today

So other than diet and exercise - I will just hope, wait, pray for the best.  NRAS does not sound like a good thing should the next round of this personal war erupt down the road.

Any other adjuvant type activities recommended?

Thanks,

Neil D

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cooplk's picture
Replies 1
Last reply 4/19/2016 - 4:34pm
Replies by: Bubbles

Has anyone had a form of Gillian Barre from the ipi/nivo combo?  My friend's daughter is 28, dx in December '15, started a Clinical Trial, no side effects round one, a "motor variant" of Gillian Barre with the second?  How was the recovery from the Gillian Barre?  

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