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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TP35's picture
Replies 1
Last reply 11/17/2017 - 6:11pm
Replies by: mynas

Hi

What is your opinion on the pregnancy after melanoma (stage IIIa specifically). A friend of mine had melanoma diagnosis 3.5 years ago and they found micrometastasis in two sentinel lymph nodes. There is info concerning melanoma diagnosis (stage I and II) during preganancy but almost no info regarding influence of pregnancy on the outcome after melanoma diagnosis.

I would appreciate any information

Best

TP

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MLWHIT's picture
Replies 10
Last reply 11/14/2017 - 10:51pm

I have stage three and it was found in the lymph node after sentinel node biopsy.  Still waiting on some further scans for validation that it hasn’t metastasized to other areas of my body. I will consult for first time re immunotherapy on Wednesday.  I discussed removing remaining lymph nodes vs taking a wait and see approach.  Due to the fact that these lymph nodes are in my groin area I am worried about the impact on mobility and likelihood of swelling in my right leg.  I am leaning towards the wait and see approach but wonder if I am missing something.  I have young sons and am thinking about the immediate participation in their daily lives, but scared that I may be making a decision that could impact my lifespan.  

Thank you for any insights  

 

MLWHIT

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wmpado's picture
Replies 10
Last reply 11/14/2017 - 9:34pm

Hi my name is Wendy, I am a 45 yr old married mom to 4daughters who was diagnosed in August of 2017, with stage 3 melanoma on my left leg.  On November 2nd I had surgery to remove the rest of the tumor and the affected lymph nodes, also had a skin graft for the tumor site.  I just found out that 2 of the 3 lymph nodes they removed from my groin were malignant.....so now I go to my Drs next week to discuss what's next.  Needless to say I'm nervous, but am also looking for questions or things I should bring up to my surgeon.  I'm an going to ask about a PET scan and recommendations on oncologists, and what's the advantages to surgery vs the ultrasound testing every 3 months.  Just trying to be as informed as possible.  

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/14/2017 - 1:22pm
Replies by: keepthefaith11, Anonymous, Bubbles

I am very afraid and not ready to give up on my mom she is 62 yrs old . She has been fighting Melenoma for about 5 yrs .  This past September it reached level IV.  She also has acute leukaemia believed to be caused by radiation .   She has mets in her brain which were stabilized by radiation .  She also has two enlarged nodes on her chest and mets in her lung and liver .  She started Keytruda 6 weeks ago and it helped her leukaemia significantly .  The melanoma however does not seem to be responding .  One met in her liver in particular seems to be growing (I believe it is 16 cm).   She has stayed on Dexamethsone to ensure the swelling of the brain mets went down .  This has caused awful side effects , weakness , steroid induced diabetes, and focal seizures .  She is now in hospital with pneumonia and a fungal infection and her blood levels have dropped again .   Sisnce this has happened she has made significant progress over the last 4 days .  She was pretty much sleeping most of the time and she can now eat a meal and sit on the side of the bed comfortably.  He oncologist doesn’t believe that the therapy is working and wants to turn to palliative Care .   I’m determined to not give up on her and believe after 2 rounds of Keytruda it’s too early to tell .    Can anyone give any words of wisdom ? 

 

Thank you 

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Honeysmom's picture
Replies 6
Last reply 11/14/2017 - 3:23pm

I had mole removed from back area near butt. I had several surgeries and came out cancer free about seven months ago. Cancer came back on left leg theigh, hip, and butt area close to original surgery site.
I have completed five radiation treatments and have severe leg swelling.
I am to start combo immunotherapy drugs soon and are freaking out on side effects.
I wonder if I will loose my hair with this medication.

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/12/2017 - 11:39am
Replies by: Janner

So I had my path report back for a few miles and one said lentigious junctional nevus no atypia and clear margins.  The other said lentigious compound dysplastic nevus with mild to moderate atypia.  Clear margins.  My Derm didn’t seem worried. I have had stage 1a melanoma and have had many mild to moderate dysplastic moles.  But from googling the lentigious junctional nevus no atypia I find nothing.  I asked a dermpath person at my dental office I work (he’s a patient).  He said it’s just a thin normal mole and he uses that term all the time for thin dark moles.  But a nurse told me it’s a precursor to melanoma and that scared me to have two separate answers.  So does anyone know if that term is just a benign mole as I was told or is it a premelanoma?  Why no urgency if it is?  Hoping Janet can give input too as I know has had many dysplastic as I have.  

Sher

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Elaine Block's picture
Replies 2
Last reply 11/15/2017 - 12:13am
Replies by: Nashvillian, Bubbles

Has anyone had any success in getting Medicare to pay for Opdivo for Stage IIIC?  

My husband, David, had a melanoma removed from his back in May -- SNLB came back clean.  Then in July he had a newly discovered metastatic melanoma that was in transit to the lymph node removed from his back.  

He was scheduled to begin the ipi/nivo/nivo+ipi trial in the end of September, (just within the 10 week time limit) when our onc seemed to warn him off the trial. He was concerned that David might be randomized into the Ipi only arm and I think that, especially in light of the results of the most recent study finding Nivo superior to Ipi, he wanted us to consider waiting until Nivo was approved for Stage III melanoma, which he thought would be imminent.  

I understand that Nivo has now been added to the NCCN protocol for Stage III melanoma, but hasn't yet received FDA approval for Stage III -- we're assuming (as are the finance folks at Georgetown Lombardi) that Medicare won't pay for Nivo for Stage III until the FDA approves it.  In looking through posts here, though, I've read about a couple of people getting insurance coverage for Stage III and wondered if anyone has been able to get Medicare to pay for it.We are very uncomfortable not to be getting any adjuvant treatment.

Thanks,

 

Elaine

Husband, David, diagnosed 5/2017, stage 3C

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After my last CT scan there was a new hypodensity spot to show up on my liver. I am currently taking Ipi every 3 months and my oncologist says this is common. Has anyone else had this experience? I am now concerned to get my next scan in fear that this may  be melanoma and move me from stage lll to stage IV.

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Spl25's picture
Replies 3
Last reply 11/11/2017 - 10:12am
Replies by: Anonymous, TexMelanomex, jennunicorn

Just developed a mild rash on my foot after pd-1treatment. What’s the OTC first line of defense against itchy bumps?

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http://forum.melanomainternational.org/mif/il12-not-2-in-combination-wit...

More info on this trial: "The phase 2 results showed that the patients in the trial that took the combo therapy (ImmunoPulse IL-12 and Keytruda) achieved a 57% progression-free survival rate at 15 months. That is pretty impressive, especially when you consider the fact that these patients didn't respond at all with an anti-PD-1 alone. What's even better is the fact that 11 out of 11 or 100% of the patients had a duration of response. In addition, the median PFS has not yet been reached. If the long-term data continues to improve, then this biotech will continue to gain value. In addition, I can see Merck either partnering with OncoSec or outright acquiring it. As I note about the efficacy of the combination treatment, it is important to also state that it is very safe to take. The combination treatment not only works very well, but is highly tolerable for patients to take."

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/10/2017 - 12:55am
Replies by: Anonymous, jennunicorn

I posted very recently the topic called "scared!!!" in wich i was concerned about a pea sized hard lump in the back of my neck. I dismissed it as a symptom from the cold i have since it's normal for lymphnodes in that area to swell up during a cold. Now i notice hard (but not rock hard more rubbery) non tender lumps in my groin the size of peas that are moveable. These are close to my most concerning mole and im afraid it could be melanoma that has metasized since a cold couldn't affect the lymphnodes all the way down in the groin? Git a derm appointment in a week and im anxious to the point of not being able to sleep and just feeling full on depressed and being only 17 i don't want to die yet. Any similar stories out there?

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Sharon93065's picture
Replies 6
Last reply 11/13/2017 - 11:20pm

Jan 2017 i booked a Viking River Cruise $2600 round trip air from LAX, and 8 nights. I canceled in Aug when my liver panel was high and my 4th treatment canceled.  I was able to cancel one day before i would have lost another $500, i use lost $389 as i didn't get the insurance.  So  my group of 8 ladies leaves today.  And I am more relieved than sad.  I would have been so worried the last few months as to how i would feel on the trip.  My arthritis has flared up.   I had breathing problems a month a go and spent two night in hospital. They ran all kinds of tests and ruled out pneumnonia, clots, etc.  I couldn't breath and the pain even with morphine was horrible, never did get a diagnosis for that one.  Had to stop to 'catch  my breath' for a week.

I need to exercise but too tired, but wouldn't be tired if i exericised right?  

My newest liver panel came back normal witht he help of down to 40mg of Prednisone.  BUT Dr called to say my creatinine was too high, and also my postassium.  And drink a lot of water, get my blood retested in two days. I go see  him Friday.  I don't know what  did to have those high numbers.  I am googling liver diets and looking at sodium content on everything.  Since i have hepatitius D from Immunotherapy.  And have to take 100mg of thyroid each morningn now.  Amazing how many things i thought were healthy i cannot have, like mayo...my  unsweetened vanilla almond milk high in soudium.

Anyways, i will go say goodbye to my 'Paris' friend this morning.  I couldn't eat all the food on the trip or drink all the beer/wine that comes with the  cruise and that would not have been fun at all............

Sharon from Simi Valley, CA 

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Spl25's picture
Replies 2
Last reply 11/12/2017 - 9:55pm

So after I get my 3 week Keytruda infusion I almost always sleep for about 20-25 of the next 48 hours. I know this isn’t abnormal on Keytruda, but I’d like to know if this is actually good for my immune system or if I’d be better off trying to stay on a somewhat normal sleep schedule. I know the immune system behaves differently during sleep, but I’m not sure if it’s a positive thing or a negative thing - has anyone seen any data on whether staying awake and active is better or worse after immunotherapy? I try to stay active as possible on the other days, but I could probably force myself to be a bit more active post infusion if it’s going to stimulate a better immune response. Listening to your body is good, but everybody’s body says “let’s take a nap” after a treatment like this - do I listen? :)

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/9/2017 - 12:17am
Replies by: Anonymous, Janner

Lately i've been looking closely at my moles and noticing some being a little out of the ordinary (most having 2 shades of brown sometimes in the middle sometimes a bit fore toward the edge they tend to be a darker shade if brown). As far as the moles go i am now somewhat of an expert on my own moles and they don't seem as scary anymore since they haven't changed much. Just as im getting over that they might be melanoma i find a swollen lymphnode in the back of my head/neck. It is pretty hard but not like a rock and it doesn't move very well, maybe because the neckmuscles won't allow it to move much and if i try to relax my neck it goes away. I have a soar throat which could be the cause of the swollen lymphnode but it's still not supposed to be hard according to some articles. It is the size of a pea and it's sometimes hard to find and only one other person has been able to find it when i asked them to feel my neck and pointed out the exact place.I have noticed no other symptoms except the loss of apetite i had when i started reading about melanoma and such but gladly my apetite is back and im back to normal weight after dropping maybe a kg or two as a sideeffect of being anxious. This scares the living hell out of me being only 17 and not wanting to be diagnosed with a melanoma that has metasized to my neck (atleast not quite yet). I have a derm appointment in 6 days and im hoping for someone to have any stories about similar experiences or anything that would calm me down? I understand my concern is not significant in comparison to what some people on here have and are still having to go through but i still attempt to find some reassurance in other patients stories.

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