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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dessie's picture
Replies 1
Last reply 1/23/2018 - 6:59am
Replies by: Tracyyy

After my sentinel node bx and right inguinal bx Jan 15, I was first told... Thurs (3 days), got a call Friday from Doc who apologized saying results wont be in til Mond or Tues... ok.. Monday obviously came and went.. soooo.... Today WILL be the day... funny how my life is on hold till then ie planning what to do next..

I will update once I know... Tx all for  being here..

Dessie

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Anonymous's picture
Anonymous
Replies 3
Last reply 1/23/2018 - 8:17am
Replies by: DaveNB, SABKLYN

Seriously?  I come here with a problem and you want my money?  

 

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jrtufo's picture
Replies 3
Last reply 1/22/2018 - 10:32pm
Replies by: jrtufo, Linda5

Not sure that it really matters if the fatigue I can't get over is due to my cancer or to the treatment. (MEK/tamaflar combo + Keytruda)...I probably should word that differently, I know it matters, its just that you hit another Friday night and the fever/chills merry-go-round starts and you think, "I'm not going to call the doc, I know how to deal with this, lots of sleep, ibprophen, and fluids, another week of no fun."  And you look at your journal and you realize that the length of these "spells" and the "normal" time between are not charting in the right direction.  That is the physical side.  Then there is the thinking side which asks the question "If I stop the drugs long enough to feel well, will that give the itty bitty piece of desmoplastic melanoma tumor just the opportunity to grow?"  Probably no real answers to be found on the discussion board, but how do you all deal with the question of being sick of being sick?

JulieT

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Oldwife's picture
Replies 4
Last reply 1/22/2018 - 4:34pm
Replies by: Oldwife, Anonymous

I've been reading through past threads on ketogenic trials and on diets in general, and am interested in updates in the last few years. (most of the threads are 2012 or earlier.)

A recent conversation with DH's radiation oncologist on the subject of diet was interesting; he said he himself would do a low sugar diet. He said that the difficulties of accurately monitoring the real sugar and other nutrient intakes of patients in a well designed trial were so great that a definitive trial would never be done.( He had worked on trial design and rigor for years.)

Thanks!

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Replies by: Anonymous, aaron_oakes, cancersnewnormal

Hi everyone,
I recently finished my 4th infusion of the Yervoy/Opdivo dual treatment and have tolerated them pretty well -- with the only notable side effects being a rash/itching, some fatigue, and a fever after the 2nd and 3rd infusions.

My last infusion of both Yervoy and Opdivo was in Dec 27th. For a little over a week though I've been experiencing some stomach pain and discomfort. It's more of a constant gnawing and sometimes burning feeling. The location is mostly right under my rib cage where my stomach is located, with sometimes the discomfort located a bit lower than my stomach.

I have no other symptoms that would indicate colitis, ie diarrhea, tarry/bloody stool, etc. I also am pretty regular when going and all else is normal in that department.

I'm wondering if the discomfort or sometimes pain in my stomach could simply be a stand alone symptom like inflammation. Maybe an ulcer? Have any of you experienced only stomach discomfort with no other symptoms while on Opdivo/Yervoy?

I called the triage nurse last week when I started having the pain and described all of my symptoms and level of pain/discomfort and then spoke to my oncologist a few days later. They both felt it was not bad enough to go to the ER and that it may get better with some time if it was inflammation related.

I just don't know anymore. Seems like over a week is a bit long and it's aggravating just feeling like I can't do much or move around too much without my stomach feeling more discomfort to where I have to lay down for a while to ease the discomfort... which usually works.

Any ideas or advise would be greatly appreciated!

Thank you.

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Anonymous's picture
Anonymous
Replies 3
Last reply 1/21/2018 - 4:08pm
Replies by: Bubbles, ed williams

Based on the details below, I feel like I am so close to getting rid of this awful disease, but there doesnt seem to be a standard of care treatment that "fits" someone in my position (particularly when considering I do not want to have any side effects that would keep me from doing a clinical trial down the line.

I've been stage 4 since July 2016, and have been on Keytruda since then. I had a surgery to prevent bone fracture and radiation of the bone early in the course of treatment. 

Ive had a very fortunate response to the Keytruda since, with large tumors on the Spleen and Lungs disappearing, and no new tumors showing up. I basically have 1 bone tumor in the pelvis that is nonresponsive, and 3 small liver lesions (1.6x.9 cm, 1.1x.6 cm, <.5cm) , which, while small, are in dangerous areas as far as the damage they could do to my body if they were to grow quickly. 

I also have what appears to be a lesion in the pericardial space which has grown, and is currently the reason why we may channge therapies Keytruda. Thats also an area where a single, large tumor, could be deadly. 

BOTTOM LINE: Does anyone know of any trials that work well for people who have responded well (and are still responding well) to PD-1 blockade, but which does not have the toxicities associated with adding ipi or doing TIL?

Any help at all would be deeply appreciated. 

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Lddaughter's picture
Replies 1
Last reply 1/21/2018 - 10:33am

Hi everyone,

I know it has been awhile since I have checked in. My mom is almost 1 year from getting really sick and getting a stage 4 diagnosis. In March 2017 she started on Taf/Menk combo and did was doing great! Late December scans showed that she had stopped shrinkage and was holding her 1.7x1 cm liver tumor/rest of them stable. So they decided to switch her to IPI/Nivo infusions.

 

My mom had her 1st infusion on January 12th. Now I know these affect everyone differently so there is no magic answer to this but 1 week later she feels like she did before diagnosis. She is weak and her liver feels bloated/painful. She developed an itchy rash too but we expected that and are controlling with Benadryl and hydrocortisone cream. My question is can these side effects be this drastic after even the 1st infusion? Is there anything to be aware of? No fever, no gut problems just uncomfortable and in pain. 

 

On a side note, she left me again (getting treatment 5 hours from home) and has worked 10 hour, long labor intensive days. She is also not eating the best but there is nothing I can do until she gets back to KC with me. I keep telling her she is overworking herself but she isn't listening. I am making her call the Dr. to report everything Monday and hopefully get at least a blood work up to see if we can identify what is going on. I want to make the best of these infusions and am scared of what will happen if these don't work. She has been doing amazing the last 9-10 months so this really feels like a big push backwards.

Any information or reassurance would be great. Thank you,

 

Aubrey

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PTgal's picture
Replies 2
Last reply 1/21/2018 - 4:18pm
Replies by: Bubbles, jennunicorn

Hi everyone! I am currently awaiting my WLE/SLNB scheduled for Wednesday 1/24/18. However, this question is for a friend of mine who has also been diagnosed with mean ol' mel. Unfortunately, she had a positive lymph node, so this is clearly a game changer for her. After looking online, it doesn't appear that there are many specialists around here (Little Rock, Arkansas area). My question is if there are any preferable melanoma specialists/hospitals/clinics in our region of the country. Air travel is possible, but the closer the better. Any help would be greatly appreciated.

Laura

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I'm not sure how to post photos on this forum using a URL..but I made the photo my profile picture (sorry for the inconvenience, I greatly appreciate any advice/input! Also, sorry if I sound ignorant or paranoid. I don't know much about this other than what google told me.)

Two weekends ago I woke up to a bump on my cheekbone. Right away I noticed that it wasn't like any zit I'd ever had. It's fairly large yet doesn't seem to have pus in it (a very tiny bit of discharge came out when I just barely touched the bump yesterday, I have not been picking on it so my photo is how it looks all the time). It is not sore/tender at all even when pushed on. I only ever get a few mild zits per year. The photo on my page was taken January 20th. The bump doesn't seem to have changed in size at all. 

I'm a 28 year old female, the only cancer in my family so far was an aunt with colon cancer and my grandpa with bladder cancer. However, I spend a lot of time on the beach (in Minnesota, so only for a few months each year) and I've never worn sunblock... my skin never burns but I do tan pretty fast. Also, I have quite a lot of moles (when I was 12 I counted them for fun and got about 100!)

I'm only going off of google image searches but my bump looks fairly sinilar to images of nodular melanoma. 

I showed a couple friends and they think I'm overracting so I'd appreciate any comments! I don't want to be the sillyhead who asks her doctor to check out a harmless zit. But it's already been on my face for two weeks and apparently nodular melanoma grows into your tissue within a couple months.

Thank you to anyone who takes their time to help me out! I greatly appreciate it. (:

-Dawn

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Threefitty's picture
Replies 1
Last reply 1/19/2018 - 3:20pm
Replies by: mrsaxde

I loved grapefruit juice all my life, and I mean, I can google enough to get this:

"those who had a serving of citrus fruit or juice 1.6 times daily had a 36 percent higher risk of the cancer than those who consumed it less than two times a week. A serving was defined as half a grapefruit, one orange or a 6 ounce glass of juice"

But now that I have melanoma, do I not even need worry about enhanced risks that I would otherwise totally ignore? Or should I avoid this potentially poisonous nectar lest its sweet bitterness include regret?

Grapefruit/Food combinations also welcome.

 

 

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jennunicorn's picture
Replies 29
Last reply 1/22/2018 - 8:41pm

After what feels like forrrreeeeverrr waiting to get my post-surgery scan... I am NED! My birthday wish came true! 

Sending my positive vibes to all of you, I want everyone to get their NED badge too!

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

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Anonymous's picture
Anonymous
Replies 3
Last reply 1/20/2018 - 10:38am
Replies by: Anonymous, cancersnewnormal

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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AshleyS's picture
Replies 7
Last reply 1/22/2018 - 11:33am

I’m mad, I’m in shock, and I’m exhausted. 

I hate typing my story so you can just go look at it. Here’s the need to know: After having mets nearly everywhere, I’ve been NED since November 2015. I finished Opdivo in March 2017. 

Last Thursday I found a lump under my left armpit. I had a biopsy this morning. I was prepared for the worst and the best and I got news in between. They believe it’s superficial melanoma. Of course I need scans now. 

Have any of you progressed after being stage four and then NED? Has anyone only had superficial melanoma at this point? 

My kids are 3 and 5. I was pregnant with my son when this all “heated” up. I just want to be in their lives. 

Ashley

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Anonymous's picture
Replies 4
Last reply 1/22/2018 - 10:42am
Replies by: cancersnewnormal, Anonymous

I'm hoping someone here might be able to offer an educated guess as to what's going on with my groin. I've asked my oncologist and dermatologist about it, and they both say it's nothing to worry about, but it's pretty terrifying having groin pain on the same side that the melanoma was removed, and not having the doctors give me any real idea at all about what might be causing that pain.

The situation is as follows. I was diagnosed with Stage 1A melanoma last May (2017). The biopsy reported 0.38 thickness, no ulceration, mitotic rate of zero. I was extremely relieved at the time because I knew the biopsy report was about as good I could have hoped for, short of it being melanoma in situ.

The problem I'm having now is that starting about a month or two after the WLE, I've had groin pain (same side as the melanoma) that has been getting progressively worse. It started with barely noticable groin pain that I wasn't even sure was real or just imagined. Over the past six months or so, it's gotten progressively worse to the point where now I feel almost constant tingling on my groin.

There are no palpaple lymph nodes in the area that's bothering me. I went to my oncologist and he felt around the area and told me it's nothing to worry about (but didn't offer any suggestoin as to what might be causing the pain). He said I could have an ultrasound done on the area if I was really concerned, so I did that, and it came back fine. No swollen lymph nodes or anything else they would consider alarming.

I also saw my dermatologist and told him about this and he said it's nothing to worry about. I asked if the WLE itself could be causing my groin pain, and he seemed to nod in agreement to that being a possibility, but he stopped short of actually giving me any personal opinion on why my groin is constantly sore.

My foot on the leg that had the melanoma has been swollen since the WLE, but it's been getting better gradually. A couple of months after the WLE, it was extremely swollen, and now the swelling is barely noticable (but still a bit swollen compared to my other foot). I might be able to comfortably assume that the groin pain is related to the foot swelling, but if the two were related, it seems backwards that the groin tingling would be getting worse as the foot swelling gets better.

So that's where I am today. A constantly tingling groin on the same side as my melanoma/WLE, a clear ultrasound, and no real idea at all about why or whether I should be worried about it.

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jennunicorn's picture
Replies 16
Last reply 1/21/2018 - 5:22pm

Hi everyone!

I have recently been dealing with knee pain at a higher level than usual despite taking glucosamine joint supplements. Other joints are doing fine, but I had some knee pain years before doing any immunotherapy. So, I just had a x-rays done on my knees, showed cartilage loss which was not surprising. But the surprising thing that it also showed was osteopenia.. loss of bone density. Not quite osteoporisis, although I have not had a bone density scan done so I don't know exactly how bad it is yet.

I have been on vitamin D3 1000iU daily for almost a year. I may need to up that dosage.

My question is whether anyone has read or heard about bone density loss as a side effect of immunotherapy? Or if anyone has experienced it (at an age where it would not be common). 

I have my post-surgery scan tomorrow (finally) and will also see my oncologist. Going to bring this up to her as well and see what she thinks. I am going to be 31 on Sunday... but, my body seems to think I'll be 71, sheesh!

 

 

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

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