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.

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I was dx with 1A on my left leg no follow up testing by recommendation of the oncologist due to its depth. Over the last year my dermatologist felt a lymph node in my groin area but as I’m a thin person she said sometimes you can feel them more on that body type. Also through the year I have a lipoma in my left upper arm, underneath, I have to raise my elbow to let them check it. I have been having migraines for years. That run in my family but they have been well controlled on an preventative medicine. I feel ok. My husband says I’m sweating profusely at night. He says it really gross. I don’t sweat during the day. I feel like I’m hypersensitive for some reason. I can now feel the lump in my groin along with one in my breast the lipoma and in my neck. 

What should I look for?  39 year old mama. 

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Jbond09's picture
Replies 4
Last reply 1/8/2018 - 10:25am
Replies by: cancersnewnormal, Anonymous, Jbond09

I was dx with 1A on my left leg no follow up testing by recommendation of the oncologist due to its depth. Over the last year my dermatologist felt a lymph node in my groin area but as I’m a thin person she said sometimes you can feel them more on that body type. Also through the year I have a lipoma in my left upper arm, underneath, I have to raise my elbow to let them check it. I have been having migraines for years. That run in my family but they have been well controlled on an preventative medicine. I feel ok. My husband says I’m sweating profusely at night. He says it really gross. I don’t sweat during the day. I feel like I’m hypersensitive for some reason. I can now feel the lump in my groin along with one in my breast the lipoma and in my neck. I do always feel tired and a bit easier winded  

 

What should I look for?  39 year old mama. 

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Bradley75's picture
Replies 7
Last reply 1/16/2018 - 9:59am

Hi everyone,

I had my first PET scan and MRI since my surgery in late October of this year.  The scans got moved up a few weeks because of two suspicious lumps I found on the back of my head.  After scans and a ultrasound guided needle biopsy, the lumps are not melanoma.  They are reactive lymph nodes.  I have had those a few times over the years and each time they cause more anxiety than they should. 

My PET shows no evidence of disease anywhere in my body.  I never thought I would be able to say that again.  The plan is to continue Keytruda every three weeks and re-scan in late March.  It has been a wild ride.  Nice to start the new year with great news.

Brad

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dmarie's picture
Replies 8
Last reply 1/11/2018 - 9:03pm

My husband was dx in late August 2017 (craniotomy to remove largest of 13 brain mets - quite a surprise!) He has been on Taf/Mek since September, and has almost no side effects, and has been having mixed results - many tumors have decreased in size (lungs, liver, lymph nodes and some in brain), but others have stayed the same (brain & femur), and "some" new ones have popped up in his brain (small still). He will have another MRI at the end of January to see where the brain lesions are, and then will (probably) be recommended to have whole brain radiation followed by immunotherapy (not sure what drugs, though). We are of the thinking that Gamma Knife is the way to go, to reduce necrosis and cognitive deficiencies that could result. 

He feels great and is asymptomatic. He has adopted a mostly plant-based diet (some fish and eggs, but otherwise vegetables only), and believes that this has helped him.

We are considering going on a cruise soon, while he feels well (and has hair), not knowing what the future holds. IF we did go away, it would be sometime between late February and mid-April. We have two middle-schoolers, so need to consider their schedules. I am concerned that delaying treatment could be detrimental. We are still pretty new to this beast, and I wonder what those of you who are more experienced would do.

Thank you.

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kabc's picture
Replies 11
Last reply 1/5/2018 - 12:11pm

I was turned down for Ipi/Nivo trial here in Ontario because the margins from my head/neck WLE were positve. Onc wants me to start radiation and then Tafinlar/Mekinist.

I am looking for any advice and experience that anyone with head/neck has had with this combination.

My head has not even healed yet and all this is happening fast.

Thanks to anyone who may answer.  I am feeling a quite a loss not getting into trial.

 

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LisaS's picture
Replies 3
Last reply 1/2/2018 - 9:19pm
Replies by: Toby0987, Janner

My 85-year-old father was just diagnosed with melanoma after having a very large mass (6cm+) removed from left armpit 3 weeks ago.  We are unsure of the primary.  He also has a large mass in the lower lobe of his right lung which has not been biopsied but is suspected to be melanoma.  In March he had lymph nodes biopsied in the left armpit but they were erroneously diagnosed as squamous cell.  In 2016 he had squamous cell of the right salivary gland and the gland was removed.  He attempted chemo for the squamous cell but was unable to withstand more than the one infusion.  He is not attempting treatment for the melanoma. Since he is not attempting treatment, his oncologist is unwilling to order a PET scan.  Without this scan we cannot know the current spread of disease or a prognosis.  My father resides in rural MS and is not willing to travel to a large metro area where a melanoma specialist could be consulted. At present he is in no pain and does not seem to exhibit any signs of possible mets to the brain.  I would greatly appreciate any comments on prognosis that anyone can offer.  

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Aloha14's picture
Replies 4
Last reply 1/5/2018 - 5:09pm

Hi,

I haven't been on here for about 6 months or so. However, I had melanoma on my left leg which spread to one lymph node, and terrible problems with seromas after surgery. On Dec 9th was my one year mark and the PET/ct scan came back clear. Yeah, now for follow ups.

Unfortunately, I have just been diagnosed with invasive breast cancer today and so will be dealing with that for some time. 

I haven't read recent posts but I wish everyone well. 

 

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Hello Everyone,

My Doctor suggested this DecisionDx test to see how likely my melanoma is to return.  Has anybody had this test done?  What is the cost? Does Insurance cover it?  

Thanks for any comments.

Terry

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I have had 5 combo doses and 27 nivo maintanance doses and would like to know how you feel if you have had around the same number. I have severe fatigue, salavi gland issues that come and go after each dose, joint soreness, still have the rash but no itching or burning, still on thyriod meds and have to take prescription potassium supplements and vitiligo that continues to slowly spread. My last 2 scans have been NED and my dr wants to continue treatment for 9 more months.which will make treatment total 2 years and 3 months.

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I only ask because, everywhere I look, it says that the biopsy has little to do with overall longevity. So, has anyone just commenced with the wide excision, and then the follow-up care (i.e., lymph node palpation, skin checks, etc every 3 months). Just wondering. Thanks!

Jen

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bchestney's picture
Replies 3
Last reply 1/5/2018 - 12:01pm

Just finished 4th course (8th infusion) and side effects are significantly reducing my quality of life.  They include severe dry mouth, muscle pain, muscle weakness, joint pain, general malaise, chills.  Now my most recent labs show elevated liver enzymes, all of which I will discuss with my onc next week.  Since I am NED, and the Nivo is adjuvant therapy, it is tempting to discontinue the infusions.  If I were 100% certain that these side effects would disappear after the 16 more infusions, I could suffer through it.

But what worries me is that they are hoping the one year of infusions will "teach" my immune system to attack cancer cells.  Might it also teach it to continue to attack the healthy cells (causing my side effects)?

Please share your experience if you had side effects during Nivo infusions, and the infusions have now been discontinued (either after the full course of treatment, or after early termination due to toxicity).  Did all side effects disappear, or did some persist?  If so, for how long so far?

thanks to all, and hoping 2018 is a great year for all of you!

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JRM's picture
Replies 2
Last reply 1/3/2018 - 11:07pm
Replies by: JRM, Janner

Hello everyone, I am new to the MRF Forum, but thought it beneficial to be more proactive regarding my past melanoma, even though I have been clear for five years. I was first diagnosed with melanoma stage 1 in 2013 and had a wide excision of the lesion on my upper left arm. My margina came back clear the first time around. Over the last several years and with many other moles removed, I have been seeing my original diagnosing dermatiologist twice a year for mole checks.

Today, I had two suspcious moles removed near the original melanoma scar. My dermatologist thought they were atypical nevi and did not seem too worried,  but they both had black spots within the moles. My question to everyone: how common is it to have a recurrence of early stage melanoma near an original site? If my biopsies come back positive this time around, I would imagine I would have a wide excision surgey again. Would a PET scan be advisable now?  Has anyone had experience with this? Many thanks and best wishes for good health and happiness in 2018! 

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PTgal's picture
Replies 2
Last reply 1/4/2018 - 3:51pm
Replies by: JRM, Janner

Here I am with more questions. My doctor (family practice/GP) performed the excisional biospy of the mole which was later confirmed as T1b malignant melanoma. He has referred me to a general surgeon for the WLE. I meet with the general surgeon on Monday and will be asking about SNB as well.

As far as follow-up afterwards, should I just see a regular dermatologist or some other type of specialist? My GP said I can have skin checks at his office, but I would feel better about going to a dermatologist at the very least. Anyone know the best place to go in Little Rock,AR?

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Tracyyy's picture
Replies 12
Last reply 1/8/2018 - 9:50am

Hi all, my mum was diagnozed with melanoma in April 2013. Until the end of November all the regular scans were clear, then my mum felt an enlarged lymph node in the groin. Last month they removed it surgically and the biopsy results came back as melanoma in 3 of 6 nodes. The surgical team suggested PET scan, then local radiation in the groin and immunotherapy. However, the melanoma specialist we are seeing does not agree and suggests watch and wait and scans every 3 months. The only approved treatment for stage 3 in my country (Bulgaria) is interferon but he is against it. I know about the FDA approved treatment and I am so dissapointed that our options are so limited here...I know that watch and wait is also an option but I prefer us to do anything we could. I have read so much until now, even the doctor today asked me if I studied medicine, but I think being informed is the key. I also emailed some clinics in Israel as they apply some of the treatment approved in the US.
So has anyone been trough radiation or watch and wait for stage 3? I known it is an individual choice but I will apreciate some advice. I also know that there are many stage 3 and 4 survivors here which gives me hope.

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