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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Anonymous's picture
Anonymous
Replies 6
Last reply 1/2/2016 - 6:25pm
Replies by: MichelleNz, Kare83, Janner

It's been over a week since my WME on my right shoulder blade (back) and I haven't had to take pain killers for around 7 days, though it is still quite painful. Putting any pressure on the area hurts and I'm still unable to sleep or sit back on a chair properly. How long could I expect the pain and discomfort to last?

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I'm a thankful 5 year survivor of thyroid cancer (papillary carcinoma).  After radioactive iodine treatment didn't work I underwent external beam radiation. 

I've gotten use to the limited mobility in my neck, soreness in my left arm and dry mouth.  To me these are small things.  Recently my left arm and fingers have began to tingle like they're asleep. I change positions and it goes away but then comes right back.  This morning I noticed a small round dark spot kinda like a bruise on my left arm.

Im wondering if anyone has experienced anything similar.

thanks

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Rita and Charles's picture
Replies 2
Last reply 12/13/2015 - 9:08am
Its so hard to dissect the radiologist reports, but I google and wikpedia and hope that I am hitting the mark.  We got our physical copy of the CT results and news is good, no new progression, some stayed unchanged and some had slight decreases. The report also had intel that maybe we just didn't have in the last CT as it was done with out contrast and only of the Lung area.  This CT did the abdomen, lung, chest...and with contrast. So more info...........log it away until the next one to compare it to again.  If you are reading this Colleen and have any medical input - chime in.  I am a self taught reader of CTs.  Dr. Kosty reviewed with Charles on the phone, but without a report to ask about every sentence.....it was just high level. I read sentences like "mural nodularity in the gallbladder which could be gallstones or polyps.......and polyps can turn to other things..so scary, right? but much of the report isn't explained by the doctor....just the good news of no change or decreases, but the rest I fear could contain hidden future worry. I think that doctors forget that what they see daily is confusing or frighting for a layman.  A report that speaks of nodules unchanged  in areas we didn't realize there were nodules has us going "what"?  But below is the good news, enough of the worry bead list. 
 
Lymph Nodes: first diagnosed 3x4 combined - below breaks them down individually-
Paratracheal/precarinal lymph node affected is now 1.8 cm x1.3 cm slightly decreased from 2.1 cm x 1.4cm
Subcarinal lymph node is now 2.3 cm x 1 from 2.9cm x 1.2cm......slow and sure.
 
Right Mid Lobe Lung:
The right mid lobe tumor is now .5cm x .4cm x .5 cm from last CT of .6cm x .6cm x .5cm
 
.7 cm hypodense nodule in the left thryroid lobe but then states no axillary lymphadenopathy....so no swelling of lymph nodes adjacent.....or so google explains the definition to me.  So part of our cloudiness of medicine, all previous reports don't touch on any mention of the thyroid lobe. So....since they say no scary progression in the full report, was it there before and just not a cause for their concern?  It concerns me.....I am going to watch that sucker.
 
Other tidbits a 1 cm nodule in the left adrenal gland......but this isn't worry them, again I am watching that sucker.
 
Unchanged as well is a 2.4 x 1.1 cm portacaval lymph node....... did we not even see that before?
 
Again, Dr. Kosty says good news - moving forward in the right way.  With this report there seems to be more of a list of lymph node involvement....from thyroid to adrenal to trachea....again, going to watch these suckers!
 
So now we keep moving, 2 more months until the next scan, 2 more months of the current medicine. I try not to worry that we still aren't pros at navigating this all yet, it has only been 5 months and life still has a suspension quality to it........happy but worried all at the same time.
 
*we just did blood work today, 12/11 and meet with Oncologist for monthly visit on Monday 12/14, Back MRI scheduled on 12/17
 
 
 
 

Rita

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Rita and Charles's picture
Replies 1
Last reply 12/13/2015 - 8:09am
Replies by: Momofjake

I visit often and don't post a lot, i constantly look for topics that might answer a question or set my mind at ease.  Afterall, my husband was only diagnosed in May......only one tumor in his lung, lymph nodes affected...but not the tumor burdon of some. 

Early on I picked up on Arties journey, I followed his posts and felt so touched by the sheer hard work he put into his battle. With humor he described his journey, his ups and downs even his pain. He kept fighting. Selfishly I felt solace in thinking that my husbands was caught early, he is responding to the BRAF combo...we wouldn' have to walk in Artie's shoes.

I have been working like mad for months now, keep moving, supporting Charles ....keep moving so I can't stop to think what If? After I read about Artie, I cried harder than I have in 5 months. I never knew him, but I feel I knew him.  I cried for him, I cried for us - for the fear that we might be just at the tip of an ice berg of what our next 3 years might unravel to be.  I am positive......but the fear came with Artie's passing, how will we handle choices he was faced with.....will we ever have to make those choices.

This is just temporarty sadness insanity, tomorrow is a new day and we will decoraate for the holiday...plan for years to come.  With hope.........but I will not forget Artie, Life has forever changed, measured by blood tests and scans, spots and derm visits....but we have life, now we just need to hang onto Artie's courage and humor.

Take care everyone, all stages - with all the new medicines maybe the melanoma beast can be tamed.

 

Rita

Rita

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Maureen038's picture
Replies 8
Last reply 12/14/2015 - 3:56pm

Hi all,

    It's been so long since I've posted because my husband has been in a battle with this awful disease. I haven't wanted to post it for a long time, but because of Artie's  incredibly brave postings about all of his struggles, I feel I must share what my husband has been dealing with in the hopes it can help someone else. After being on the Ipi/opdivo trial for over a year where he was just taking opdivo for at least nine months he progressed. We were SO close to NED. It was devastating!!! He had two lung nodules that were in the lung, but one was very close to the heart. He continued the opdivo for a month while we consulted with three melanoma specialists. The next scan both nodules doubled in size and the one by the heart, he had to have a heart MRI to make sure they could operate. We decided for him to have his third VATS surgery on the right lung because of how fast the growth was and how close it was to the heart. The surgery was successful, but he still had two nodules in the chest cavity. Each of the specialists had different opinions, but because Bill has had interferon(waste of time), TIL at NIH and then the Ipi/opdivo,there weren't many options. He didn't qualify for some new promising trials because he had hemolytic anemia due to the Ipi. When we went to Sloan Kettering they did a blood test to look and see if he had any common cancer mutations. We found out only about 2-3 percent of melanoma patients have the Her-2 mutation and Bill has an over abundance of it. They asked Bill to do the pill form of DTIC while they were waiting for the trial to start. He was supposed to take five days of pills and then wait three weeks and do it again. Unfortunately Bill's blood counts went so dangerously low he was in the hospital for nine days. Luckily he got out of the hospital the Friday before thanksgiving. Apparently Sloan Kettering is in the process of writing a paper about patients that have been on the Ipi/opdivo trial and progressed and then did the DTIC. They had five patients there that had very similar responses as Bill and they also had very good scan results. All of the patients were neutropenic.

Bill lost about ten pounds too. His blood levels are almost normal and his scans showed very good shrinkage on the two nodules. The trial at Sloan Kettering has been delayed until February so we are paying for TDM1 ( a form of Herceptin- breast cancer drug)every three weeks because we think it's risky to wait. We are hoping that insurance will pick up some of the cost. Bill has gained back about four pounds and still has an amazingly upbeat attitude. I feel very blessed we have options and hopefully the drug will work.

May all of you have the best holiday possible!

Love,

Maureen

 

PS This post is in honor of Artie!!! May we always remember his courage and honesty!!! He will be deeply missed on this board!!

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SABKLYN's picture
Replies 3
Last reply 12/12/2015 - 8:04pm

Found this his and thought I would share

 

http://www.wrul.com/2015/12/10/glen-a-artie-vangampler/

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Momofjake's picture
Replies 11
Last reply 12/11/2015 - 9:28pm

Scans were not good. And dec 5 Artie wrote to me here. Now he is gone. Not my best day. I hate "cancery" days. I feel faced again with the reality Jake may not have the time I want....6 months of Keytruda. 2 new tumors. Throat and rectum!!! He is 18! For 6 months he has had 20 in his liver, 20 in his lungs, many in his spine, all over his bones...now this. He takes it great. Feels fine. Looks good. 

I go to bed devastated. Not Artie. At least he is free of this beast. I will wake up okay. I can't waste the good days crying about the bad ones. 

I loved you Artie. You were the first to help me. You were smart, kind, and empowered me in a fight I didn't want with melanoma! I will keep you in my heart! Please watch over Jake. 

Kerri

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Janner's picture
Replies 3
Last reply 12/10/2015 - 11:17pm
Replies by: kylez, Anonymous, Bubbles

I liked this article - gives a good analogy on how the body works and how cancer metabolizes sugar (layman terms).

 

http://www.cancerdietitian.com/2015/08/why-you-should-stop-saying-sugar-...

http://www.MelanomaResources.info

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BrianP's picture
Replies 12
Last reply 12/29/2015 - 11:23am

I know several of you are Facebook friends with Artie or maybe had other channels of communication.  I would like to request if any of you see information regarding obituary or memorial services if you could please post here.  I would very much like to know if and when his family has made any "in lieu of flowers" request and I'd also like to know his parents' address so I might make a donation to MRF in his memory.  I'm hesitate to post someones personal address on this site but if you could message it to me that would be great.  I'm not sure if his parents knew how much he was loved by this site but I think it would be a wonderful gesture if there was a fundraising effort in his honor.  Right now on the MRF donation page I don't see a way to let the family know the donation would be from Artie's MPIP family but maybe someone on the MRF staff can help us with that. 

Thanks,

Brian

 

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micheley's picture
Replies 6
Last reply 12/11/2015 - 10:23pm

Hello everyone,

 I went to Penn today for my 2nd Yervoy (10 mg) treatment and it was pushed back to next Thursday, 12/17. Dr. Schuchter felt it was a good idea to get the rash under good control before giving me the next treatment -- which my husband and I both agreed with.

 As many of you know, the past 10 days I have been fighting a pretty good rash. At first it was located solely on/in my ears, neck, upper chest and upper back, and underarms. It was mostly diffused red bumps and not concentrated. They initially treated me with Hydracortisone .1% cream but that did nothing. In fact, the rash moved on to all other parts of my body (including tiny blisters around my mouth with small, red, itchy bumps around my left eye, anus, labia, and a llitte bit in the entrance to my left nostril, basically targeting the mucosal tissue, peripherally) with the most intensely irritating and sore rash in my armpits. It was (and is) angry, red, burning, and stinging. Then I received a prescription for Fluticasone .5% -- which still did nothing. As of yesterday, I started with a low dose (10mg/daily) oral steroid that bumped up to 20 mg/daily as of today's visit.

 The good news is they took my blood work for today's treatment and it all looked good. So, when I get through this rash portion of the effects, the first treatment was ok. Of course, as I've been told, the effects can become more increased with each subsequent treatment so the next one brings additional apprehension. Dr. Schuchter indicated she could/would drop my dosing to 3mg for the next treatment if I wanted her to but, at this point now, I'm committed to taking the 10mg dosing -- if or until I experience more serious side effects -- as there is no hard data yet to support the benefit at the 3mg dosing for Stage 3.

 By the way, I wanted to mention I found a lump on my neck behind my left ear last Sunday -- the opposite side of my neck dissection. Of course, it freaked me out. I called Dr. Schuchter's office and her associate indicated it could be an enlarged lymph node due to the treatment. Then, another lump presented on the same side of neck surgery on the back part of my neck. My ENT, who I was seeing as a follow up to surgery, wasn't concerned either -- also indicating it was more than likely the treatment not a recurrence. No one was worried and they told me it is likely more nodes will become enlarged. Good to know.

 I am mentioning it in case anyone else has the same effect after their treatment. Yes, of course, get it checked out but it's more than likely the treatment as they are tweaking our immune systems -- hopefully, to a a good end!

 That's all for now. I will continue to update you.

 Wishing everyone healing, comfort, and peace.

Best,
Michele

 

Michele C Yerger

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Lindsayblueyes's picture
Replies 3
Last reply 12/14/2015 - 7:37am

Hello everyone. I've been lurking here since Sept but haven't posted until now. I'm a 35 yr old female and was diagnosed with an insitu melanoma on Sept 23rd. Margins were found to be clear after WLE. I've since had 4 more biopsies. I have atypical mole syndrome and have had several biopsies over the years. I also have a paternal uncle as well as first cousin on my mother's side who have had melanomas removed (not sure if this qualifies me for FAMMM)...

My derm put a "rush" on my latest two biopsies. I've been calling each day for results as it has been nearly two weeks. Today, finally, my derm got on the phone with me and told me they only have a preliminary report. The slides from one of my biopsies has been sent to Boston for a second opinion as they cannot rule out invasive melanoma. He said the 1st dermapathologist (sp?) believes it is a severely abnormal nevus but they want another opinion.

My question is this...how could a severely atypical mole actually be invasive melanoma. Wouldn't it be an insitu? I thought insitu was the next "step" after severely atypical. I'm trying not to be anxious but I'm definitely concerned. Any explanation would be appreciated.

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jessicaerin02's picture
Replies 15
Last reply 12/26/2015 - 4:54pm

Hi everyone,

I am 33 yrs old newly diagnosed stage 3a. I've been struggling with many decisions and finding my path through the "mad rush" phase of this diagnosis and would appreciate any input from this supportive community.

late August 2015 - mole (left buttock) excised by derm. Mole was not new, but had seemed to change during pregnancy, kept putting off getting it checked (busy with new baby and assumed (and also was told) it was normal to have some moles change while pregnant) and finally went in August. 

Sep 2015 - confirmed melanoma. Superficial spreading. 0.92mm non ulcerated, mitosis 5. Referred to major cancer centre melanoma oncologist.

Oct 2015 - WLE and SNB left groin. Margins clear. 1/1 nodes positive for micromets 0.34mm. Surg onc saw no other clinically suspicious nodes or concerns. 

Nov/Dec 2015 - Baseline CTs head/chest abdo pelvis all clear. Stage 3a. Recommended to be followed by ultrasound q3-4months. Offered interferon, or Trial available: randomized interferon vs keytruda but requires full completion node dissection, (and it's unclear if requires >2 nodes involved???). 

For peace of mind we are in the process of getting a second opinion from Johns Hopkins and have access to Memorial Sloan Kettering if we want an additional opinion. The other major cancer centre in our city would likely push for surgery but they are a bit more conservative than our centre which was part of the MSLTII trial. I trust and respect my doctors and feel safe in their care, but I can't help but wonder what the other side of this argument might be. I have a medical background and a good understanding of the research that exists. I understand the recent German paper which found no difference in overall survival, yet the question of local disease control is raised.

It's a very tough decision, wondering if you're at the forefront of a big practice change, or if there is truly is value in doing the CLND in the case of 3a (despite the quality of life challenges which influence my decision). I also wonder if down the road, what role the lymphatic system will play for the newer immunotherapy drugs, and in that case, would retaining the nodes be the right way to go. 

On top of this we are in the midst of trying to preserve my fertility via egg retrieval given the chance I may choose interferon (or additional therapies in the future, in that case it would be a peace of mind thing  as well, as we would like to have additional children down the road). On that note as well, our medical oncologist has assured me that there is no evidence to link pregnancy with melanoma, but I have read some anecdotal cases that might contradict that. Is it advised to be NED before trying to conceive again? 

I've been advised by loved ones (and my heart tells me as well) that there is no right or wrong decision, just the decision that is right for you... I trust medicine, I trust research but I do know that it has to feel right. I have a beautiful baby girl and loving family and I just do not want to leave this life early. I am so scared.

Looking for advice/input or if anyone is currently going the ultrasound route and what your experience has been. My apologies for the long post. And thank you for listening...

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Becky's picture
Replies 31
Last reply 12/12/2015 - 5:53pm

I see on FB that Artie lost his battle. This makes me so sad. I rarely post but have been reading along for 6 years...everytime there is a loss it breaks my heart. There are a few over the years ( Himynameiskevin, Dian, Jerry) that break my heart even more. Artie is one of those. He has been in so much pain, but never complained. Always here to give advice.

 

keep fighting everyone

Becky

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Azcaddyman's picture
Replies 6
Last reply 12/15/2015 - 5:57pm

Let's start out by saying I don't mean to ramble on but here's my story.

A couple years ago I first saw it. A large bruise/birthmark looking thing on the back of my neck. I asked my gf if she ever noticed it. She assured me i always had it. We had been together 5 years at that time. I asked my ex wife if she ever saw it. She said she didn't know what I was talking about. I asked my mother. She said I was born with a birthmark. I thought how strange I could go 40 years and never know. So I just stopped worrying.

I've had battles with my health. In 2013 I started having problems breathing. I've had asthma my whole life but I had never had serious issues like this. I had a cough so severe that it would make me faint. Off to the Dr I go. Get referrals to cardiologist and pulmonologist. Heart was fine. Lung Dr thinks I have copd. Starts me on a full prescription regime. I have now been on prednisone among many other drugs for 2 years. However in the duration my health was so bad it cost me my job and career.

Now unemployed I decided to take time off to recover and be a daddy again. My youngest daughter was born in 2014. I was feeling more like myself. I decided it's time to get back to work. Ok in all fairness the local court also demanded I work on my growing child support from my first 2 kids.. But that's a whole other story

I started applying and interviewing but just as soon as I did, I started to feel just off somehow. I felt sick but not in a cold or flu way, just not well. At first it started mildly. Eventually I started getting a persistent headache that never goes away completely. It's at the base of my skull on the left side (right above my skin lesion). Then my legs started feeling heavy. Like I was pulling a few hundred extra pounds. Next came burning numbness and tingling in my feet. So bad that I'm even writing this at 3 am cause sleep is impossible.

In October 2015, while battling my now mystery illness I had the chance to interview for a job back "home" in Phoenix az. My parents paid for my trip home. When I arrived I actually felt good. Almost no symptoms of anything except one scary thing. The skin lesion had started itching a few weeks prior. After not looking at it for years I noticed changes. It had grown "eyes". 2 spots that had lost color. On a visit to my parents home I again asked my mother about my birthmark. She again told me I was born with it. However upon questioning her my heart sank. I was born with a "stork bite". My children all had it. It's a strawberry colored mark at the base of the scalp. It's common and it fades quickly. It's also not where my lesion is located. I'm now convinced I have melanoma. I've done my research. I know what I'm looking at.

Upon my return home, again I quickly started with my other symptoms. Now add in extreme fatigue. Getting out of bed is a chore. The headache and ringing in my ears is more than I can tolerate. Off to the Dr I go. I get a referral to an ear nose and throat Dr. I didn't mention my skin lesion (yet) cause I sat in disbelief. Years of treatment for copd/asthma means I had dozens of Dr visits. Every one of those visits involved in a Dr using a stethoscope on me. I had a Dr inches away from my cancer and no one saw it. Oh I'll add it's amoeba shaped almost 2 inches long! Now this time after describing my headache again I pulled down my shirt and said " do you think this thing could explain anything " now I get a referral to the dermatologist..

Stay with me folks, I'm getting there.

I chose fox chase cancer center for my treatment. Partly cause they accept the Medicade I'm on and partly cause they have a good reputation. After the month wait to get in I met with my Dr. Upon quick examination he told me he thinks I have a pigmented basal cell carcinoma. Tells me he wants to do a shave biopsy to confirm. I'm so confused. He didn't use a dermascope. He didn't even get close. He just ran his finger across it. I asked him how he could tell the difference between what I have and for instance a simple melanoma in situ. He looked at me. Paused. Gave me a look I could only assume meant "stop reading things on the internet". He corrected the way I said in situ. Told me he could tell it's basal cell by the feel. Now I felt stupid. My hours on you tube and hours on Google are no match for his 12 years of training. I felt dumb. I stopped asking questions. He assured me he was confident it couldn't be melanoma. Now only in my head I'm saying your wrong. There's no waxy or pearlescent feature. there's no raised or rolled border. The color is wrong. It's in a place you'd expect melanoma as well. However he proceeded with the shave biopsy. Only taking a small portion (maybe 30% of the surface).

Now I'm confused. I'm sick. I have no answers. Basal cell carcinoma isn't serious. Ok cancer is always serious but come on, it's not going to explain my symptoms. I'm relieved though. I figure perhaps my headache/fatigue/pain is something related to my copd meds. Perhaps I'm anemic. I don't know. Now at this point my car broke down. Being unemployed for 2 years has taken its toll. I have nothing. Not a penny to my name. My gf supports me and our daughter on a very meager salary. I can't get to my dr. Again I'm playing Dr Google and thinking I'm either anemic or have diabetes. All I knew was it can't be cancer. Right?

A week after my Dr visit I get the call. I'm working on my car at the time and miss the call. He actually left his cell phone number and said to call any time. That's never good. When I finally spoke to him he told me it is confirmed melanoma. He said he's confident it's only stage 1. That it only shows at .77mm deep. Yeah, I'm thinking, it's only .77mm deep cause that's all he shaved off! How can the genius that was confident it wasn't melanoma be so sure it's stage 1 (no a or b stated)? Mind you, I've had this tumor growing now for over 5 years. He then set me up for a consult with a surgical oncologist.

Finally folks here's the questions

1. Is it concerning that an alleged cancer specialist dermatologist performed a shave biopsy on only a small portion of a malignant melanoma?

2. Will this give my surgeon enough information to know if a sentinel node biopsy is called for

3. What are the chances my headache/fatigue/tenitis/peripheral neuropathy are related to my cancer?

4. Which Dr do I spill my guts to about all my problems? My primary? The surgeon? Who's most likely to help?

Ok that's it. If your read this far into my story you deserve a medal :) thank you.

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