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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Side effects from lpi/nivo kicked in, took 6 weeks but here they are. The same ones several of you guys have experienced.  I have been given steroids and Imodium to help but it’s still awful. I have  two more infusions, do the  symptoms stabilize or settle down ? How did you tolerate this, could use some advice. MIke K.

stage 4 spine and liver tumors. 

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2Kathy's picture
Replies 3
Last reply 6/17/2018 - 10:27am
Replies by: ed williams, 2Kathy, RHG77

My first infusion of ipi/nivo was 9 days ago. On Tuesday, I started with fever/chills/neck pain. Neck pain subsided after 3 days but the fever/chills remain and I am managing with Tylenol and lots of liquids. The past 3 nights however, I have had crazy night sweats, which is something I haven’t experienced ever in my life. Nightclothes soaked. And waking up multiple times per night.

anyone else on this combo who experienced this side effect and if so, was it around for long? Aside from it contributing to the fatigue, I am concerned that it could indicate I’m having some negative impact on my thyroid from the treatment.

Thank you.

 

 

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Hello All,

I don’t usually post, so for my background, I was diagnosed April/May 2015. Nodular melanoma 4.5mm, top of left calf. Sentinel Lymph Node Biopsy positive at microscopic sub-capsular level and a staging of 3B. No additional treatment, doing watch-and-wait and have been NED for 3 years.

During the last month I was diagnosed with seminoma testicular cancer and had a “radical inguinal orchiectomy” to whip it out. Prognosis is very survivable and recent CT scan is clear of progression (actually scheduled for my melanoma follow-up). Part of the post-operative treatment for seminoma can be a few doses of targeted radiotherapy (relatively low dose), to reduce the risk of recurrence.

My question is: should I be concerned that the radiotherapy will hit my immune system and therefore increase the risk of a melanoma recurrence? Melanoma remains my most dangerous enemy. Watch-and-wait is also a valid option after seminoma but can depend on the characteristics of the tumour and I didn’t have that meeting with the doctors yet.

Thanks.
Mark.

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Kalamazooan's picture
Replies 3
Last reply 6/17/2018 - 7:57am

Hello, I am new to the community.  I am writing because today I noticed a small mole on my thigh, circular, about the size of a pencil tip (one mm).  I think I may have had it before, but today it seemed to be a darker brown.  (I am fair-skinned, and all of my other moles tend to be light brown.)  Tonight I looked at it under a magnifying glass, and it seems to contain two tiny black dots, like blackheads or pin pricks.  That would account for its somewhat darker color. 

Does this sound like something I should be concerned about?

I'm seeing my primary care physician in two days on another matter, and I'm wondering if I should ask him to take it off and biopsy it, or whether instead I should make an appointment with one of the physician's assistants at the dermatology clinic I go to and have her do the excision.  Or does it make a difference whether a PCP or a dermatological PA does it, in terms of competency?  It might be several weeks before I can get an appointment with the physician's assistant.  Also, should I have a punch biopsy or have it sliced off?

Also, I'm assuming since it's so small, I'm probably in good shape, even if the biopsy should come back positive?  

Thanks for any feedback you can provide.   

Ben

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MDUNKLE's picture
Replies 11
Last reply 6/16/2018 - 8:20pm

Hello - I'm Michelle, my husband Tom was diagnosed with Stage 4 metastatic melanoma last Thursday, 6/7.

We are going to the James Cancer Center in Columbus, OH, his oncologist is Dr. Claire Verschraegen. Has anyone heard of Dr. V or been treated at the James?

Tom's melanoma started with a mole on his back, 4mm+ depth, removed last month along with lymph nodes. One of the 8 nodes showed positive for melanoma. PET Scan on 6/7 shows tumors in his pelvic area, hip bones and back and full in his liver, there is also a spot on his lung.  MRI shows a small 3mm lesion being reviewed for melanoma but initial is it is not in the brain. We are still awaiting BRAF results. Initial treatment discussion has been immunotherapy and BRAF treatment if applicable.

We haven't gotten a second opinion - should we? and if so where? Who?

What questions should we be asking right now?

We are trying to move past shocked and denial stages to take action. We have changed his diet from total processed and fast food to a low-fat/sugar, fresh veggies and fruits, no red meat, seafood (he doesn't love chicken), lots of garlic and stopped drinking all of those awful drinks (redbull, monster, gatorade, etc). Also starting to exercise.

He is feeling some pain in his back, any suggestions? Dr. prescribed vicoden, I would prefer a more natural pain relief.

Thank you,

Michelle

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steph4746's picture
Replies 5
Last reply 6/16/2018 - 8:52pm

Hi all, 

I had my first CT scan after finishing four rounds of ipi/nivo so I thought I did share my results  No detectable signs of melanoma!  I could not be more thrilled  The small met near my original groin lymph node site was gone (This is the location that appeared when the Taf/Mek began to fail) and the possible 3mm met (unclear because of lung scaring from loads of pulmonary embolisms last year) was gone too  

 

My team is thrilled with my response and I will soon be back to treatment in a couple of weeks  I have had to take a small pause because I developed Hypophysitis after my fourth round  Additionally, I am now deleoping vitiligo of my skin and nails  My fingernails have grown in white and are sunken at the beds  Has anyone had crazy nail stuff happen with ipi?  I fear they may all fall off  

 

 

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2Kathy's picture
Replies 16
Last reply 6/17/2018 - 10:22am

Me: Stage iv, large lymph node tumor, a few small ones, LDH normal. Diagnosed 5/22.

I’m a week out from my first infusion of Yervoy +Opdivo. I’m feeling overwhelmed, among many other things. I slept most of the day after my treatment, was little less fatigued the next day, but had neck pain and fever Mon-Weds, which has lessened tonight.

I read this board and participate in another online support group, and have learned a lot and gotten much-needed support from the only people who can understand what I’m going through. But...

I feel so utterly uneducated when I read other people’s posts. The acronyms and knowing every bit of data of all your lab tests and basically being walking encyclopedias about melanoma...it’s so daunting to figure out how and if I can become that knowledgeable. A lot of what is said here, it’s just Greek to me. And I’m the type who likes to ask questions and learn stuff, but trust me, I didn’t have the smarts to go to medical school and it feels like I need to basically become one now.

Anyone with a stage 3/4 diagnosis who was already suffering from depression? I’ve been on medication for depression and anxiety for many years and I’m definitely not saying it’s harder on me to have this diagnosis than it is for others but I am concerned that my depression has reached extreme lows that I had never experienced a few times since this started. My cancer center offers psychological counseling specifically for cancer patients and I’m going to try and get a referral so it’s covered.

The emotional and psychological toll this is taking on me is profound. And I don’t see other people saying that in online support groups. I see a lot of people sharing about the medical challenges, but it’s not common to see people talk about feeling sad, scared, depressed, etc. Makes me feel kind of alone. Going to a melanoma support group in a few weeks and I hope that will help me, the nurse who runs it is wonderful, so compassionate.

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Tracyyy's picture
Replies 4
Last reply 6/16/2018 - 5:13pm

Hi, warriors, wanted to share some good news with you. This morning mum had first CT scan after staring Taf/ Mek in a trial for Stage 3 C unresectable in the end of March and we just got the results - the oncologist told us that the results are great and the pelvic nodes decreased in size! I am so happy, this is the best news we got since November 2017. On our way to NED! Honestly I expected the nodes to disspear knowing that target therapy acts fast, but we will take one step at a time and pray that the drugs are our miracle.

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john24's picture
Replies 8
Last reply 6/15/2018 - 1:01pm
Replies by: Julie in SoCal, Bubbles, Coragirl, ed williams, Anonymous

i was battling with prostate cancer for 2 years. Until my consultant
Dr Ahmed Mustafa from Dubai told me about a cure of another patient who got treated by one of his
colleagues in Dubai using cannabis oil. According to Dr Ahmed's story, the treatment lasted for 3 and halve months. So,
he said i too can be treated by this same method. So, he contacted his colleague and he came down to discuss how this can be done.
I was placed on four months treatment. This happened early 2017 and now i can confidently say i am free from any cancerous cells.
Although i still go for routine check up, but no trace of cancer cells.
if you want to contact Dr Ahmed Mustafa on this, send him a mail on cureforcancerinitiative@gmail.com

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My husband has had this horrible (whole body rash) since just before X-Mas.  He has seen 3 different Dr's in Tucson, AZ.  He has now seen another dermatologist (PA) in Sierra Vista, AZ.  Now his Primary has referred him to yet another dermatologist in SV, AZ.  It takes a month to month and a half to get in and see each new Dr.  This rash is driving him crazy.  He is weak, has no energy, has lost his appetite and lost c. 30 pounds since the beginning of the year.  We spent c. 3 hrs in town several days ago and he was in bed for 2 days.  So far the Dr's only seem to be trying to treat him topically.  No one has looked to see if it could be systemic.  This next Dr. is supposed to be able to do that.  His blood tests are not significantly off.  His RDW (sd) is 58.7 Range 38-49 and his RDW (cv) is 16.5 Range 11-15.  His segmented neutrophils are 79.1, no range given and, his LDH is 300.  Results of the LDH from 2011 forward have bounced around with 275 the highest reading till now.  In 2016 it was 225, in 2017-244, 2018-300 with a range of 112-245 given.  I realize those figures in and of themselves are not particularly alarming but am wondering if those results along with his symptoms could be indicative of Mycosis Fungoides or Sezary Syndrome, or something else just as scary.  Any input from anyone would be most appreciated.  Thank you.  PS.  Dr. P. will be seeing him tomorrow ( 06-14-2018).  Any input would still be appreciated.  By the way, he has a history of melanoma and mononucleosis (I believe the noncontagious type).

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 6/14/2018 - 9:43am

Hello! I’m thankful for the info I’ve gained from this board in the last six months. I had a melanoma stage 1a diagnosed at the end of last year. My thoughts are that it “flared” during pregnancy. I was sick with worry over it but am thankful it was only 1a. At the time of biopsy (shave) my doctor didn’t palpate my nodes and he didn’t at the WLE either which was performed by him in his office. Once he palpated them at my “first” skin check follow up I left his office and read about the role of lymph nodes. I became sick with worry as I had a lymph node swollen in my armpit on the same side as my melanoma during a good amount of my pregnancy. It has since gone down so I’ve talked myself out of my worry for the most part. But I wasn’t even aware of this connection because he never informed me and didn’t even perform it until six months after biopsy. I have since mentioned it and he wasn’t worried at all.

I also have three smaller moles that became super dark during pregnancy. They still are. There’s been no change after birth but they still concern me. They aren’t large but aren’t like the rest of my moles. I’ve pointed them out and he doesn’t seem worried. But he’s VERY laid back. In fact my original melanoma looked classic and he said as he shaved it “this isn’t melanoma.”

Should I switch doctors? Should I demand for more biopsies? It seems a lot of people with melanoma get them done all of the time and I haven’t had anything biopsied other than my primary.

 

I would love some suggestions and opinions. Thanks!

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MichelleRHG's picture
Replies 6
Last reply 6/16/2018 - 5:16pm

Hi Friends,
I always like reading good news here. It gives me hope. Maybe my report will help someone, also. I recently advanced from stage 3 to 4 and had a thoracotomy 8 weeks ago to remove 2 lymph nodes in my chest that were adhered to an artery. After a few rough weeks, I am healed and my pain is gone. The best news is this week's CT showed no active disease. Now to step off this rollercoaster for the next 3 months. Feels weird to have stage 4 cancer but have nothing detectable. I'm sooo thankful!

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Dwarla's picture
Replies 0

I saw my oncologist and she is almost positive that I'm allergic to Yervoy. I've had 2 treatments and 4 days after the second one my lips, tongue, and face swelled. After a trip to the ER, I've been on benedryl around the clock. I'm still having swelling episodes 2 weeks later. Opdivo only from here on out. Hopefully what I've had will shrink my lymph nodes.

On a positive note.......

My mouth is in much better shape after using coconut oil suggested by Gene_S. Thank you!

...my husband and I are going to a MLB game! First get away we've had in several years! We're excited. I'm not having a treatment until after we get back! Yay!!! 

Dwarla

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jagstter's picture
Replies 6
Last reply 6/16/2018 - 4:45pm

Labs, Full CT & Brain MRI on the menu for today. Meet w/ the Team, tomorrow to discuss known (kidney tumor) & unknown. Hoping nothing else turns up, though I've had a 1" hard lump behind my left nipple, since the beginning of May & am still recovering from prostate surgery, early April. That recovery has been surprisingly difficult, even though I'm now 9 weeks out. I'm pretty sure I've developed another UTI (ugh!) but the doctors here were kind enough to order a urinalysis & save me from waitning another 2 weeks, before my appointment w/ the urologist back home.

Per Celeste, I'll definitely push for a neoadjuvant approach, especially if any vagary exists about the exact nature (RCC or Mel?) of the kidney tumor ... it's at least worth a try & may stave off surgery, at least for a while. Like most of you, I'm sure, I've had more than enough of that ;-)

Anyone in town? If so, it would be great to connect. Please, let me know & take care, everyone!

 

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sister of patient's picture
Replies 13
Last reply 6/15/2018 - 12:51am

Hey all,

Good news up here - my sister Leisa is scheduled to conclude 2 years of immunotherapy with last infusion on June 22. She's a bit nervous about it but I'm so happy for her!!

She's right on the "sweet spot" as far as timing is concerned too (from my understanding of it), two years of immuno in total and NED for the last year. 

So, a couple of things in case the info is of use to anyone:

She began a steroid taper again about 4 weeks ago and that'll take another 12 weeks, as the reduction this time is very slow. Onc also warned that she may be in for endocrine system problems so we'll be on the lookout for any issues there and, frankly, 2 1/2 years of steroids have taken a huge toll (you just look at her and she bruises - every time she has a different nurse in the chemo suite and they see her arms they question her as to whether or not she's being abused.) The onc says it'll take some time but her skin will thicken up again and return to normal.

She's had several side effects involving inflamation (uveitis, suspected pneumonitis and myocarditis) but , other than the uveitis, her onc could not tie it to nivo - so many instances that we jokingly refer to them now, collectively, as "nivo-itis" but some of these have been very scary so this is why I'm glad treatment is finishing.

She also has vitiligo head to toe - I had wondered about this but, when her hair and eyelashes grew back after WBR, we had assumed that the radiation had caused it to turn white but onc confirmed today that it was the ipi (had two combo infusions before WBR and then nivo only thereafter.)

Also, I mentioned before that my sister had asked for and was prescribed Ritalin - this was not long after WBR and it was specifically given to combat the weakness and fatigue it leaves. She stayed on it for a year, took herself off and then, wham!! - experienced nivo fatigue for the first time, which has stayed with her, so another great reason treatment's ending. For those experiencing such fatigue though, it may be worth asking for Ritalin.

A quick word about her nivo dosage: under the trial she was in, the nivo infusion was the 1 mg. per kg. with the combo but her nivo only has not been the 240 mg. - it has been a steady 3 mg. per kg. Prior to weight gain with steroids, she would've been under the 240 but that didn't last long and for (about) the last 16 or 17 mos., her dosage has exceeded 240 mg.

And, maybe of importance to anyone here in Canada, for the last year of treatment, we were kind of in the dark as to who or what program was paying for treatment (she started under clinical trial but it was only a year long) - we thought it was some sort of "arm" of BMS paying for her treatment (because they had interviewed her when the trial concluded) but, lo and behold, it was our good old OHIP system here in Ontario that paid. 

As for a plan in the event of recurrence, onc says she'd probably look for another trial but that taf/mek and immuno would all be available to her (not the case if she had failed on them though but she never did - responded to everything).

One thing I want to ask about here is: onc wants her to concentrate on skin checks because she stated that her (my sister's) odds of developing a new primary were still much higher than the general population. I thought it was only about a 10% chance >> is that not right (I'm sure I got that info here)???? Naturally, she'll be seeing her derm regularly anyway but I want her to be on the lookout for intransits, given the number of them she had previously.

Last thing, I've stated it here before but it's worth repeating - immunotherapy has done the total job for my sister, there was no surgery after CLND (if we added all organ, bone mets and intransits, the tumour burden would've actually been well over 100 - and that does not include the hundreds of micro brain mets or the larger ones, 3 of which were bleeders). She's had a pretty rough ride - WBR is no picnic and mel has left her with permanent damage - BUT she has her life back and I still have my sister. :)

Take care everyone and most importantly, don't lose hope!!!! Cheers!

Barb

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