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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Fighter_JSS's picture
Replies 1
Last reply 6/9/2018 - 7:34pm
Replies by: Anonymous

I have been on Taf/mek combo for just over a month. Stage 3a melanoma that was resectable. Original scans were clean. At my first follow up since the pills I had my lab work done and set up for a EKG but when I asked about having scans I was told because I wasn't metastatic that they wouldn't do any ct, pet or mris again unless I show symptoms of a problem...my oncologist said if I was interferon they wouldn't be doing scans either. He said they don't like to as there can be false positives. Does this sound right. I could've sworn they said every three months and ultrasounds of under my arm where the one lymph node affected was found but no mention of that either. This seems reckless but I don't know. Again a second derm I've seen has tried booking me for a year from now when in office she said every three months as well. I'll be pushing back on that tho because in the booklet for taf/mek it says skin checks every two months. And these are highly recommended people here in Ontario.

Stage 3a Braf+ new fighter

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MelanomaMike's picture
Replies 4
Last reply 6/13/2018 - 9:58am

Hi Family, hope yer all doing good & maintaining yer treatments with tolerable side effects cuz God only knows when their bad their freaking bad!
But anyways, my last infusion was canceled due to extremely low ACTH at 1.0 and im gathering it should be a lot higher for us humans like in the 40's 60's..(we all are unique) so, now im learning this has everything to do with adrenal glands/cortisol secretions & a whole slue of componants related. Explains my week & a half of no eating, (no appetite) weekness fatigue (extreme) and so forth. So, iv been prescribed Hydrocortisone (steroid) so, lets see what happens, first my Thyroid now this, its all good. I eas also prescribed my very own Megace! Wich is a god send, those of you who have followed my posts lately know why its god to me haha...
So Ipi/nivo #2 is set for June 15th. I have a MRI (head) this coming Monday 6/11 wich some pf you i cant stand scans (except CT scans, there a piece of cake) i have claustrophobia and take plenty of Adivans haha...well folks, have a good weekend and youll hear from me soon like after scan results...love ya...Mike

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khimes's picture
Replies 7
Last reply 6/13/2018 - 6:26pm

I just got word to what my Opdivo treatment is going to cost after 2 infusions ...

73,000.00 per session this is approaching 1 million if you include scans etc.  Everything I have read says the cost for total treatment should be150,000 or so.  Does anyone have an idea on what i should expect for other treatment centers?  I am currently getting Opdivo 1 time every 4 weeks at Goshen Center fo Cancer Care, Indiana.

 

I have good Insurance, but the plan is mostly self insured and this will potentially affect the companies ability to continue benefits at current levels.

 

Thanks and wishing you all the best with this battle.

 

 

 

 

 

Ken

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tedtell1's picture
Replies 13
Last reply 6/11/2018 - 9:40pm

Hi everybody;

About a month ago started to develop some discomfort in my belly. Has been getting progressively worse. A week later I started 100MG of prednisone (no nasty side effects except for keeping my appetite when  I am uncomfortable eating). Now tapered to 40 MG. Last week saw onco, got me scheduled for dreaded colonoscopy which was today. Colonoscopy was essentially normal, no signs of colitis...or anything to really cause the problems/pain. Now tonight, pain is worse, really uncomfortable and nothing has really worked. I have another Opdivo treatment (monthly now) a week from Monday. Getting pretty uncomfortable and worried. Any thoughts experiences? 

Thanks,

Ted

Ted Tellman

Stage IV initial, currently on Nivo 1x per month. WLE in Feb 2018, NED after surgery and recent scans. Treatment at Regions, St. Paul, MN, Dr. Dudek

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Bubbles's picture
Replies 1
Last reply 6/11/2018 - 8:12pm
Replies by: bjeans

So there is this:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/06/asco-2018-survival-of-melanoma-brain.html   Not surprisingly immunotherapy worked on melanoma brain mets.  But the presentation does give a pretty good over view of how times have changed in melanoma treatment.

And there's this:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/06/asco-2018-nivo-vs-ipi-as-adjuvant-in.html  Nothing too earth shattering here, either.  Yep.  Nivo does better than ipi as an adjuvant treatment (folks who have had their melanoma tumors removed) in Stage III and Stage IV patients of all stripes.  Stage III patients were disease free longer/more often than Stage IV on both drugs.  BRAF status made no difference.  And probably most important for melanoma world currently ~ while those with a higher PD-L1 expression did a bit better...folks with lower levels of expression STILL RESPONDED!!!!!

For what it's worth.  Happy Friday.  Celeste

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Coach2u's picture
Replies 12
Last reply 6/12/2018 - 1:31am

I am stage 4 with tumors on liver and one on spine at t-12. Keydruda did not work after 4 treatments. Switched to Yervoy and Opdivo and just had second infusion last Monday. So far no side effects. According to Doc side effects are an indicator that the stuff is working so now I am concerned this is not working either.  Has anyone had success with these drugs and not had a lot of side effects?

i had a second opinion and that doctor said to consider radiation or spine but my doc says not a good idea at this time. Radiation kills the spot but does not allow for other options later like surgery. Any thoughts out there. Also second opinion said get MRI of spine and my doc said just got CT and MRI will not offer any new info. Therapy would be the same. So plan is to continue therapy for the 4 infusions and then get CT. It the waiting and wondering that is the hardest. So conflicted I want to do everything to get rid of this and live a little longer.

i was only 5% positive for PDL-1 so that is one reason he said Keydruda might not have worked. Sure hope this new stuff does.  MIke K.

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Anonymous's picture
Anonymous
Replies 4
Last reply 6/9/2018 - 2:27pm

i was diagnosed with stage 2 b in March of 2014.  I had wide excision surgery with a sentinel lymph biopsy.  My melanoma had not spread to the lymph nodes. I continued with full body checks every 3 months until two tumors close to the primary were found in my leg in May 2017. I was diagnosed with Stage 4 melanoma.  It had spread to the lungs.  I have been on Keytruda since Aug. 2017 and doing well. The tumors in the leg have been shrinking and only 1 tumor remains in the lung.  Luckily it has not gotten bigger.  My understanding is Keytruda only works in 40% of patients.  So my questions are:

 

1.   If it stops working when has it stopped working?

2.   If you can with stand the side effects and are seeing progress how long do you stay on keytruda?

3.   If you go off keytruda and the cancer returns do you go back on keytruda?

4.  What is the life expectancy for stage 4 patients.

My oncologist doesen't seem to want to answer these questions.  I just feel like I am going thru this blindly.  Any input from those that have been thru this would be greatly appreciated.  I think the not knowing cause more anxiety than knowing what to expect.

 

Thanks 

 

 

 

 

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kellygirlsr's picture
Replies 7
Last reply 6/12/2018 - 9:32pm

hi everyone,

I have subungual melanoma of a big toe. Surgery was performed and path report came back as 1.01 mm in depth. There is a positive margin at the periosteum.   Also, 2 lymph nodes were biopsy and came back negative.  Because I am in early stages of miminal invasive cancer, I've been searching for medical treatment for the positve margin to avoid amuptation of the toe.  All adjuvant therapies seem to treat only adbance cancer. I'm a stage IB or II.

 

Any thoughts on possible immuno therapy of early stage patients like myself?

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MaggieT's picture
Replies 6
Last reply 6/8/2018 - 1:34pm
Replies by: MaggieT, Janner, AMcReader

I have quite a few moles on my body, started going to the derm for yearly visits 3 years ago. I had my yearly visit a couple weeks ago and we did some biopsies...2 came back as moderately atypical. 

This brings me to a total of 5 moderates and 9 milds...what I hate is that all my milds looked worse than my moderates, and even then they don't really look all that unusual, in fact a lot of people would probably look at them and think they look like a normal mole. 

I've learned that, for me, I need to keep an eye out for change since some of my moles look fairly normal like I said...so I make sure to be on top of that. I'm only 30 years old with 3 small kids, and I almost fear I am doomed for melanoma since I have 5 moderates now and fear that with the ways my moles look that a severely atypical or melanoma wouldn't stand out.

Do I have valid concerns here? Or am I over thinking it too much? I try to be vigilant and not think about it all the time, but sometimes that's hard when I think about my 3 kids and not being able to be there for them should I develop one and the worst happen...

Thanks for reading.

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Raco's picture
Replies 3
Last reply 6/18/2018 - 11:56am
Replies by: Susanlee528, Anonymous, Janner

If you are on your treatments IE:  Opdivo and you have a new mole show up OR an old one is changing,

will your current immunotherapy take care of it also.

OR do you need to see your Dr and determine if its Melanoma?

Thanks

RACO

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Spl25's picture
Replies 2
Last reply 6/8/2018 - 10:28pm
Replies by: TexMelanomex, Jubes

I've been "NED" for just over 2 months, but have had lots of random aches and pains after going off of Pembrolizumab, including under my armpits and at former tumor sites. I know theres no way to know anything definitively until my next scan, but is this a common occurrence? I can assure you its not all in my head :)

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Bubbles's picture
Replies 5
Last reply 6/8/2018 - 8:23am

It's that time of year again!  I will be posting my take on ASCO abstracts for the coming bit if any of you are interested.  Yes, the selection is simply the product of what my random brain considers important.  Consistent with most of my posts, the abstracts are presented as is and my take is in red below them.  Those "takes" and opinions are mine alone.  Take them as you will.  I will be linking other recent pertinent articles or prior posts to some of them.  The first two are snore-a-rifically long!!!  Hopefully, others will not be!!!

The first is on vaccines: 

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/06/asco-2018-well-start-with-melanoma.html  

This one looks at high hopes and NKTR-214: 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/06/asco-2018-pivot-pivot-pivot-sorry.html

And today there is one on outcomes after stopping anti-PD-1:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/06/asco-2018-outcomes-for-melanoma-peeps.html  

For what it's worth.  Wishing you all my best.  celeste

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2Kathy's picture
Replies 16
Last reply 6/13/2018 - 9:17pm

I have my staging and treatment plan. I feel numb (Valium). Over the past 5 days, the lymph node tumor in my groin has grown and the pain has increased substantially. I was terrified at how fast it was growing. I was a mess on Monday and oh man, I just cried so much. Unfortunately, I have always had a very low threshold for pain to begin with. Walking hurts, lying down hurts, sitting hurts....

I am stage 4, which I expected, though I desperately hoped for stage 3 with surgery to remove this massive tumor. I’m M1a, it’s not in any of my organs, but is showing up in a lymph node in my back, and a couple of other “areas of concern”. LDH is normal.

I am starting immunotherapy on Friday, a combo of Yervoy and Opdivo. Would be interested in hearing about this regimen from those who had/have it.

Currently, no plan to remove the lymph node in my groin. This may get revisited depending on how big it gets/the pain/my mobility. I got an oxy prescription but am terrified of taking them but I don’t have a choice.

I did want to know survival rates and what the doctor told is that about 2/3 of people in my shoes respond to the immunotherapy and she has patients who are still OK (alive!) 5-7 years out. When I asked about the 1/3 who don’t respond, she said it was 1-2 years.

Feeling sad, numb and overwhelmed. But I know what I’m up against now, onward to Friday.

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Anonymous's picture
Anonymous
Replies 1
Last reply 6/12/2018 - 1:48am
Replies by: aldrichdesigner

Hi all,
After 1.5 years of first-line Keytruda treatment, they've stopped treatment and are now doing watch and wait.

Here are the results of the first post-Keytruda scan. The doc is simply calling these results "stable." He's a man of few words, at least when talking to patients!  So...I ask you. How bad/good are these results? What if anything should I be concerned about? Brain? Bones? Prostate?

Study Result

Impression
IMPRESSION:

1. Grossly stable to minimally increased size/FDG activity associated with a hypermetabolic soft tissue nodule dorsal to the C7/T1 spinous processes. Other findings, as described.

2. Unchanged multifocal FDG uptake within the prostate gland compared with 3/2018 and more prominent than in 1/2017, as described.

Narrative

WHOLE-BODY F18-FDG PET-CT: 6/5/2018 8:20

CLINICAL HISTORY: History of melanoma, referred for evaluation of whole-body. This PET/CT scan is requested for follow-up.

PET SEQUENCE: Subsequent treatment strategy

COMPARISON: PET/CT, 3/9/2018 and 1/2017.

PROCEDURE COMMENTS:
Tracer information:
Measured (injected) dose: 11.5 mCi.
Injection site: Left antecubital fossa.
Anatomical region: The area imaged included the vertex to toes
Lasix: None.
Oral contrast: None.
IV contrast: None.

Scan technique: Following IV administration of the radiopharmaceutical, images were acquired using a MI PET-CT scanner. A low-dose CT scan was performed for attenuation correction and anatomic correlation only. If a comprehensive diagnostic CT is required, the Department of Radiology should be consulted for an adjunct CT study. Images were reconstructed using OSEM, and both OSEM and BSREM algorithms when studies were acquired on scanner models MI and 710. On these scanners, future reconstruction will only be with BSREM. CTAC dose information: Based on a 32 cm phantom, the estimated radiation dose (CTDIvol [mGy]) for each series in this exam is 2.18. The estimated cumulative dose (DLP [mGy-cm]) is 318.21.

Images were reviewed in the axial, coronal, and sagittal planes. For descriptive purposes, the maximum standard uptake value (SUV max) of metabolically active tissues is reported in g/mL, unless stated otherwise. The image number corresponding to the CT series is provided in reference to findings.

FINDINGS:

Head/Neck:
Brain: Limited evaluation of the brain demonstrates intense symmetric FDG uptake in the visualized cerebral cortex gray matter. This high physiologic background activity reduces the sensitivity of FDG-PET for malignant processes. There is somewhat more prominent focal activity in the sella, possibly physiologic versus treatment related.
Paranasal sinuses: Clear.
Lymph Nodes: No enlarged or hypermetabolic cervical lymph nodes.
Tongue/Tonsillar tissues: Physiologic oropharyngeal uptake is seen.
Thyroid: No FDG avid lesions.

Slight increased size/FDG activity of soft tissue nodule dorsal to the C7/71 spinaeous processes to the left of the midline (CT image 58). This nodule now measures ~1.4 x 1 cm with SUV of 6, previously ~1.2 x 1 cm with SUV of 5.3.

Chest:
Lymph nodes: No FDG-avid or enlarged supraclavicular, mediastinal, hilar, or axillary adenopathy.
Lungs: No FDG-avid pulmonary lesions. Lung parenchymal evaluation, including for punctate nodules, is limited by low dose CT and non-breathhold technique. Slightly more prominent ~0.2 cm subpleural nodule on the superior segment of the LLL on image 76 is too small for PET characterization and non-specific.
Pleura: No pleural effusions or hypermetabolic lesions. Stable redemonstration of mild left medial posterior pleural nodularity without significant FDG uptake remains non-specific on image 81.
Chest Wall: No FDG-avid lesion.
Heart: Atherosclerotic calcification of the coronary arteries is present. No pericardial effusion.
Other Findings: None.

Abdomen/Pelvis:
Liver: No FDG-avid liver lesion.
Gallbladder: Normal.
Spleen: Normal in size and metabolic activity.
Pancreas: No FDG-avid lesion.
Adrenals: No FDG-avid lesion.
Bowel: Physiologic FDG uptake is seen in the bowel. No focally FDG-avid lesion.
Kidneys/Bladder: Normal physiologic excretion of the radiopharmaceutical. No FDG-avid lesions.
Ascites: None.
Lymph Nodes: No FDG-avid or enlarged abdominal, retroperitoneal or pelvic adenopathy.
Vasculature: Normal abdominal aortic diameter (<3cm).
Other Findings: Again seen is multifocal FDG uptake within the prostate gland (seems more prominent than on 1/2017), possibly due to inflammatory/infectious etiology though malignancy is not excluded with PET. Recommend correlation with clinical evaluation.

Musculoskeletal:
Bones: MIld focal FDG uptake within lucent subcentimeter focus on the left aspect of likely C5 vertebral body is grossly unchanged or slightly decreased in size from prior measuring ~0.5 cm with SUV of 2.3. This lesion measured ~0.3 cm in outside scan of 1/2017 -and maybe reflects overall stability but difference in technique. Continue attention. Multiple sclerotic lesions in the bilateral iliac bones, without associated abnormal FDG avidity, similar to prior.

Other Findings: No obvious focal or abnormal FDG uptake within skin/subcutaneous posterior to medial aspect of right scapula.

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Terry Palardy's picture
Replies 6
Last reply 6/17/2018 - 12:01pm
Replies by: Terry Palardy, Janner

Hi, I've just rejoined the conversation after a long hiatus ... recent biopsies revealed two new melanoma sites, an a new squamous sites, bringing my total number of individual sites now to ten, I think. The surgeon, who has always done MOH surgeries, said he will do a wide excision this time, to try to get it all in one swoop, one site at a time over a period of several weeks. 

My husband, best friend of over fifty years and caretaker passed away eighteen months ago, on Christmas morning. It has been a long sad journey without him by my side. My RRMS remains quiet, and I remain med free in that quarter, having experienced the sudden bloom of skin cancers immediately following four years of MS 'disease modifying drugs' that attack the immune system. I will always regret that treatment, and will never treat MS again. My symptoms are minimal: optic neuritis and cognitive decline rather than mobility issues.

I'm curious as to the term 'invasive.' Does it mean metastasis is ahead? I do have pulmonary nodules, and will be having a routine CT scan next week, monitoring them to assure no 'changes' in size or number. I'm told they are typically benign. The scan was scheduled before I had this recent bout of biopsies and melanoma readings.

I will be doing my own after-care without my husband by my side. I'm guessing it will be similar to the care of post-MOH surgery sites. Anyone here have any experience to share for me, regarding moving from MOH to Excision? All advice is appreciated. Many thanks - Terry

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