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 9/14/2017 - 8:09pm
Replies by: Anonymous, cancersnewnormal, MovingOn

I've just had my follow up CAT/MRI scans results come in. Did anyone else have both imagimg tests done after one another?That first.Whilst the CAT scan did not show anything, the MRI showed one enlarged lypmh node /15 mm/ and another spot in my pelvic area. I had very bad  reaction to the contrast drugs /barium I think/  they give you for the CAT scan just before the MRI and severe diarrhea I never had like before in my life .Also the MRI  test was disrupted at some point with me having to go to the rest room because of that and then continued again.Upon careful visual examination my oncologist was not able to detect or feel any hard immovable mass/lumps at the same precise spots as shown by the MRI.She is not sure how to interpret the scan results so she is referring me  to a melanoma center of excellence for biopcies to confirm or rule out melanoma.Has anyone had false positive MRI results?Did anyone have an enlarged lymph node due to inflammation/infection rather than melanoma recurrence?Obviously I am freaked out and scared out of my mind so any feedback will be highly appreciated.Thank you.

T.Chasse

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jennunicorn's picture
Replies 21
Last reply 9/14/2017 - 7:55pm

Hey guys! I just had a scan yesterday and got the report this morning... so, good news is nothing new has shown up. But, it basically looks the same from the June scan, which means the stubborn armpit tumor hasn't budged in 3 months. For those that have had stubborn tumors, at what point did you decide to just cut it out? This is its 1 year anniversary.. and the only time we saw shrinkage was on the June scan. Do I cut it out and be NED and cross my fingers mel stays away? Do I cut it out and stay on Nivo for a bit longer? Do I just stay on Nivo until December scan? In all honesty, I am getting reallllllllllly tired of infusions every other week. Especially since I have a new full time job that I absolutely love and hate that I have to have Thursdays off because of this. 

Any advice is welcome.

As always, much love to all of you!

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Mat's picture
Replies 9
Last reply 9/14/2017 - 5:23pm

Hi folks,

Recent posts by Brian and Celeste inspired me to post a brief update.  Folks know my history (or can review it via my prior posts starting in August 2013).  My most recent treatment following a challenging 2015 was ipi/nivo starting in early 2016.  I had 3 of 4 of the combined infusions and ~20 nivo infusions in 2016.  Towards the end of the year, I started to experience arthritis in a number of joints, but knees and ankles proved to be the most problematic.  There was some discussion of stopping treatment altogether--scans showed stable disease and, to the extent I had occasional PET scans, no uptake.  Instead, I opted for treatment every 12 weeks (following consultation with MSK)--on the theory that nivo's half-life in the body is around 12 weeks.  I had 2 of those infusions (March and May) and have now paused treatment.  In addition to the arthritis, which has now persisted for ~10 months, I developed pneumatosis (bubbles in the interior wall of the colon).  The pnematosis is asymptomatic, but has increased from scan-to-scan.  I've been on antibiotics for the past month and the hope is that they will knock out the pneumatosis.  Not clear that the pneumatosis is related to treatment--neither Penn nor MSK are aware of it being a side effect.  If things weren't going "well" from a melanoma standpoint, I probably would be continuing nivo (and may return to it in any event).  So, at risk of jinxing myself, I've been stable or better as a result of ipi/nivo for more than 18 months.  Otherwise, life is great.  Recently, our washing machine flooded (and ruined) the first floor of our house.  I immediately thought how great it is to be dealing with mundane problems like home repairs versus the life-threatening challenge of Stage IV melanoma.  Don't know if my stability will last, but I'll continue to take it--and be grateful for it--one day at a time.  Best, Mat

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Bubbles's picture
Replies 2
Last reply 9/14/2017 - 4:55pm
Replies by: Bubbles, Ed Williams

Here is the link to the article in NEJM:  http://www.nejm.org/doi/full/10.1056/NEJMoa1709030#t=article

And, if you are interested, here is my take on the whole ta dah...as one of the 33 NED ratties who took nivo for 2 1/2 years back in 2010:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/09/nivo-better-than-ipi-as-adjuvant.html

Thinking of all the folks in Texas and Florida.  Wishing all my melanoma peeps my very best.

Here's to the ratties!!! - celeste

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Nicklindner's picture
Replies 4
Last reply 9/14/2017 - 4:54pm

I received my quarterly scans a few days ago and the tumor on my lung has shrunk to 14 x 14 mm.  My doctor thinks this could very well just be scar tissue and there is no longer an active tumor there.  We will do a PET scan in December and will determine at that time where things stand.  She thinks that I may be a complete responder to the treatment and could very well be NED in December.  To be honest I am kind of in disbelief.  I guess living life 1 day at a time goes both ways.

I just want to offer encouragment to those who are currently undergoing treatment or will undergo treatment in the future.  Even if you are experiencing rough side effects it could be worth it.  I approached the threshhold of just about every major side effect the Ipi/Nivo combo had to offer and was only able to tolerate 3 infusions before I had severe gastritus.  Some people don't have bad experiences with side effects but for those of us who do - hang in there.  Who knows maybe they are a good sign.

Early on in my process of sorting through my diagnosis I was given great advice on this board that was very helpful for me.  Thank you to everyone who gives of their time to share their experinces and knowledge with the rest of us. 

I wish you all the best and hopefully one day soon this disease will no longer be life threatning. 

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yulkame's picture
Replies 16
Last reply 9/14/2017 - 9:44am
Replies by: yulkame, CindyJ, Imen

Hi,
My mom was diagnosed with acral lentiginous melanoma on her left foot in June 2016, stage 3c. It was Breslow 4, ulcerated. The sentinel lymph node was positive. The wound originally appeared in January 2016, but was not diagnosed until June.
The PET scan that summer looked clean. We elected to do watch and wait on the lymph nodes, recommended by Dr. Coit at MSK.
In end of October 2016, mom detected palpable nodes in the left groin. The CT scan showed positive lymph nodes in left groin, and the lymph node biopsy with ultrasound confirmed melanoma in the node. The technician poked the node 4 times (twice with fine needle, and twice with core needle).
Mom underwent the lymph node dissection surgery 11/22/2016. They removed both superficial and deep lymph nodes from left groin, since the cloquet's node separating superficial and deep showed positive during the surgery. Out of 9 superficial nodes examined, 3 were positive for melanoma; plus the cloquet node; plus 3 were positive out of 12 examined pelvic lymph nodes. Extra-capsular extension was identified in one superficial and in cloquet node.
In January 2017, the CT scan showed a small met in the illiac bone, and she was put on Keytruda.
On March 27, 2017, after 3 Keytruda injections, the PET scan showed few new bone mets as well as small pulmonary nodes:
-Right proximal femoral shaft, SUV 3.9
-Left femoral neck, SUV 5.0
-Right clavicle, SUV 2.9
-Possible focal uptake in T3 vertebral body, SUV 3.2

We decided to give Keytruda more chance to work and had two more injections every 3 weeks.

In May 2017, mom suddenly felt she couldnt step on her left leg, and the PET scan on May 19, 2017 showed increased malignancy in bone, liver, and lungs:
Marked increase in FDG avid osseous metastases:
-Left femoral neck expansile lytic lesion [SUV 12.9, previously 4.9]
associated with cortical disruption
-Right proximal femur [SUV 18.2, previously 3.9]
-New left posterior iliac bone lesions [SUV 7.2 and 8.9]
-New C3 vertebral body[SUV 8.6]
-Right proximal clavicle [SUV 8.2, previously 2.9]
New mild T11 compression fracture (less than 25 %)
Increase in uptake extent of FDG avid right anterior abdominal
wall/intramuscular soft tissue [SUV 4.0]
IMPRESSION: Since March 27, 2017,
Increased malignancy including osseous, pulmonary, hepatic, and abdominal
wall metastases. Left hip metastasis at risk for pathologic fracture.

So mom was called for an emergency left hip replacement surgery, that was done on May 22, 2017.

Subsequently, mom entered an Ippi/Nivo combo plus Radiation clinical trial, recommended by Dr. Wolchok, and had 2 injections of Ippi/Nivo every 3 weeks (on 6/07/2017 and 6/28/2017), as well as 10 radiation sessions to T3 and T12 of her spine every day starting on 6/22/2017.

Before the last radiation treatment on 7/5/17 , she started experiencing persistent nausea and vomiting. Also severe burning in her esophagus, which was burnt as a side effect to the radiation to the spine. She had difficulty swallowing anything because of the esophagitis, as well as vomiting.

On July 6, 2017, she had a PET scan simulation done to evaluate for radiation to the right clavicle bone, and the scan revealed further progression:

"Increased hypermetabolic osseous metastatic disease. For example:
* C2 vertebra, SUV 9.1, previously 4.8
* Right proximalclavicle, SUV 8.2, previously 8.2, increased in extent
* Right proximal humeral diaphysis, SUV 6.8, previously 2.6
* Left posterior iliac bone, SUV 10.5, previously SUV 8.9, now more
extensive left acetabulum, SUV 7.3, new
* Right mid femoraldiaphysis, SUV 3.4, new
Interval left hip arthroplasty with longstem femoral component with
persistent uptake at the femoral neck, correlating with a site of known
metastasis.
Overlap of osseous activity with the spinal cord at multiple levels
including at T3 and T12, correlating with known epidural extension of
disease.
New mild compression fracture at the T12 level with less than 25 percent
vertebral height loss.
Decreased uptake within a right anterior abdominal wall soft
tissue/muscular nodule, SUV 2.2, previously 4.0.
OTHER FINDINGS: None.
IMPRESSION:
1. Since May 19, 2017, increased malignancy including pulmonary, hepatic
and osseous metastatic disease. Increased pulmonary and nodal disease
since CT of June 5, 2017.
2. New left common iliac and left inguinal nodal metastases.
3. Overlap of activity from osseous metastatic disease with the spinal
cord consistent with known epidural disease better assessed on prior MRI
spine.
4. New mild compression fracture at the T12 level, probably unchanged
since CT of June 5, 2017.
5. New diffuse gastric uptake, possibly inflammatory. Attention on
follow-up imaging to ensure resolution."

She got into MSK urgent care center with an episode of atrial fibrillation on July 11, 2017. They also did a CT scan of the brain without contrast, that came back clear. While in the hospital they started noticing a rapid drop in her platelets levels to 35. They evaluated and decided this was due to an autoimmune reaction to the immunotherapy, and put her on daily 60 mg of Prednisone. The platelets were rising slowly to 48 at her discharge a week later. During 6 days at home after that she was feeling really weak and kept vomiting, and on July 24th, she fainted while getting up (her husband caught her) and we went back to the MSK urgent care. There they saw the platelets dropped back to 35, and started suspecting the bone marrow involvement. We refused the bone marrow biopsy, since after discussing with Dr Wolchok, our best bet is to try more immunotherapy (Ippi/Nivo) and they are planning to do it on Wednesday next week. It looks like mom is not eligible for any other clinical trials, since her platelets are around 24 now, and the minimum requirement for the trials is 100 (sometimes 75).
She had blood transfusion done before getting discharged from the hospital this Friday, since her hemoglobin dropped to 7.
It looks like we are down to very few options, if she is going to keep progressing on ippi and nivo.
Anyone has any suggestions for potential other effective treatments, for a 63 year old, with bone-centric acral lentiginous melanoma? Please help.
Note also, that mom has been following Gerson diet for a year with about 5 fresh juices per day, all organic, no sugar, no meat. But she started losing faith in it recently, and introduced the chicken, fish, back after her hip replacement surgery, since she needed strength. Now she cant hold much down anyway, with the nausea and vomiting. Today she had diarrhea and fever (up to 100.1), and we notified the melanoma fellow on call....
Any treatment suggestions, given her history, including the alternative clinics that were effective for the people that you know personally, are really appreciated!!

Thank you very much!

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dp2lp2's picture
Replies 1
Last reply 9/14/2017 - 8:17am
Replies by: marta010

I'm looking for pain management strategies for melanoma lesions in my foot/ankle. I had my primary removed from my heel in January 2016 (iiic) and resently started the ipi/nivo combo after failing a keytruda trial. I'm currently stage iv with multiple recurrences, in transit lesions, and a new nodule on my lung. I've been told my disease is very aggressive and I am starting to worry about chronic pain. Since I'm relatively young (41) with young children, I'd like to maintain my quality of life as long as I can before everything potentially starts going downhill.

Thoughts? Words of advice? 

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dbforever's picture
Replies 2
Last reply 9/13/2017 - 8:48pm
Replies by: Janner, dbforever

I just received results of my second melanoma in situ excision (first was August 2015). They read as follows "Melanoma in-situ is present as close as 1.0mm from the inked peripheral margin" and that "stained sections shos a small focus of proliferation or melanocytes along the dermal-epidermal junction. The melanocytesdemonstate severe cytologic atypia, with enlarged nuclei and dusty cytoplasm. There is lymphocytic inflammation in the dermis".

My derm surgeon has said I need to come back to have more margins taken, likey since the above reads it is as close as 1.0mm from the margin. Does anyone know what the rest means?

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Chasbray's picture
Replies 3
Last reply 9/13/2017 - 4:09pm
Replies by: MovingOn, Chasbray, SOLE

A I'm just learning about this fatal cancer that doctors miss a lot apparently. Why? Because it doesn't look like the typical melanoma!!!! Oh my gosh!! And how I found out about it was tryin to research a spot that popped up 7 months ago and has drastically changed literally in two days! I made an appointment today and I'm sick and terrified. Does anyone know much about this type of cancer?

Chasity bray

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Hi everyone,

    I am new to this forum as this is my first post. I have recently learned about melanoma due to having found a mole that was different then others and had grown over 2-3 years. It was removed a few weeks ago and came back as a mild dysplastic nevus. Hooray no cancer! Now from my reasearch I have found that i have a few risk factors for melanoma; blue eyes, blonde hair, pale skin, a few weird looking moles and now a dysplastic nevi.

    The reason I am posting is that I am looking for a good dermatologist in the montreal area. When I had the mole removed it was done at a private clinic. I don't have a general doctor (I have been on the waiting list for 3 years) to give me a recommendation and altough the private derm is good for quick biopsy I am pretty sure he mostly does esthetic procedures.I am looking for someone who is more experienced in screening for melanoma and that will be covered by RAMQ. I am only 22 years old and after dealing with my mom's breast cancer it has come to my attention that I need some good healthcare providers in my corner. Anybody here know a good dermatologist in Montreal for long term screening? 

thank you, I wish you all the best. 

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Christine.P's picture
Replies 5
Last reply 9/12/2017 - 7:29pm

I started Taf/Mek on June 3 and had my first PET scan since then on Thursday. I haven't met with my onc about the results yet, but it looks like the tumors I had are all at least smaller now, which is good news. My question is about a new development regarding my heart. The report noted: 

mild atherosclerotic calcification of the aortic arch

I was aware that a rare side effect of this combo was heart failure, and I have never had any heart problems ever before now. Has anyone else had this kind of development, and, if so, what was the next step? I have also been experiencing some pretty decent swelling in my ankles and feet over the past week. I called my team and they said this wasn't an emergency and that we would talk about it at my appt on Wednesday, I'm just wondering if others have experienced heart issues and what the treatment was for you. 

Thanks!

Christine P. 

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Jabujj's picture
Replies 14
Last reply 9/12/2017 - 6:57pm

Hi ladies and gentlemen,

It has been a couple tough weeks for my fiance and I.

Just to recap on some stuff and timeline.

My fiance had a punch biospy done at the start of Aug, recieving the news that she had melanoma within the first week of aug.

We ended up getting a slightly more thorough copy of the biopsy report.

Breslow .88 , mitiotic rate 1, Clark level iv. No ulceration, no signs of vascular invasion,satlllite mets or regression.

Deep margin: clear

Lateral margin: some superficial spreading melanom left in situ

Special notes: A SLNB is reccomended due to patients age (under 28) and the deeper dermis invasion of the original tumour.

We have a surgery date booked at the top cancer hospital in Canada for early october, it just seems like such a long wait (a little under two months from when the referall was sent out). I understand her stats dont put her at the top of the priority list,....but the wait is very hard (day by day as Bubbles mentioned) and does seem long.

Sometimes we debate going to a more local treament center (not necessairly specialist) that would do the SLNB and WLE but there is the scary thought that if she needs follow up treatment (god forbid), the Toronto hospital is the place we would want to be.

What is the reason for such a long wait? One of the  doctors we saw explained it to us that, usually with the initial biopsy and the main tumor being removed, there is way less chance of the cancer going to the lymph nodes after...basically saying that the time between the initial biopsy and the surgery is not as important (as Janner alluded to as well).

Bubbles and Janner mentioned about taking the time, even if it is extra, to set up things how you want them set up....its just so hard the wait, especially when I see  people posting on here, frusterated about having to wait 2 weeks till surgery.

Can someone talk this through with me again. Just need some outside perspective, as worried thoughts and tiredness cloud my judgment.

Thanks

 

 

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ahk960's picture
Replies 15
Last reply 9/12/2017 - 4:48pm
Replies by: ahk960, cancersnewnormal, Janner, Anonymous, jennunicorn

Hello everyone,

 

I have been freaking out over the past six weeks that I have melanoma. I am only 23.

I have recently shaved my head and I have noticed I have brown spots on my head. My mother died from colon cancer. Watching her go through it was terrifying and I don't have the strength to go through it. 

I went in June 2016 to get a mole on my head checked out. The dermatologist checked my entire head and removed the only raised mole. The only reason she removed it is because I was a nervous wreck. She took it off... Benign. 

I couldn't get into my dermatologist when I started freaking out so I went to my GP. He said the only reason he reffered me to another dermatologist is because I was in distress?

Can someone please take a look at the photos in the link and let me know if I should be concerned? I feel like this is all I have been talking about to those in my surroundings... 

 

[IMG]http://i66.tinypic.com/34i1bp5.jpg[/IMG]

[IMG]http://i67.tinypic.com/5xsgmb.jpg[/IMG]

 

Thank you.

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ALWAYS READY NEVER PREPARED's picture
Replies 6
Last reply 9/12/2017 - 3:00pm

Hello,

Anyone that is suddenly suffering from confusion, might have their calcium level checked. My husband had become delirious, due to high calcium levels created by dehydration, which was a fallout from fatigue/sleeping. My husband is on Opdivo/Yervoy, and became so tired, he slept all the time and was not getting enough fluids. The calcium level in his blood became really high, causing the delirium.

 

Just wanted to put that out there.

Sandy

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SOLE's picture
Replies 7
Last reply 9/12/2017 - 1:24pm

http://www.esmo.org/Oncology-News/Nivolumab-Bests-Ipilimumab-as-Adjuvant...

http://www.esmo.org/Oncology-News/Adjuvant-Dabrafenib-Plus-Trametinib-Si...

 

This is by far the most hopeful news I have seen this past year. This is a game changer for BRAF mutants AND for all of Stage 3 melanoma patients!

I hope all countries change their melanoma oncology practices ASAP!

Personally, I am not holding my breath for us Canadians. I will nonetheless try my luck with my oncologist, even if I am a year out in the clear (but still waiting confirmation on PET/CT next month...). And despite how pharmaceuticals companies design their clinical trials with the 12 week post operative period, I will try to get this one way or another.

 

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