MPIP: Melanoma Patients Information Page

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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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kristenh730's picture
Replies 9
Last reply 1/19/2020 - 9:39am
Replies by: tkoss, JudiAU, mandyjill, LRS88, kristenh730, ourvan, Anonymous

Hey everyone!

I am 31, and I was just diagnosed with melanoma. It is .7 mm. I was told by my dermatologist that I was going to have a wide excision and possibly a sentinel node biopsy/ removal. I don't meet with my surgical oncologist until next Friday, and for this planner, that is a long time away! Does anyone have any feedback about how long recovery would take for just the wide excision versus both? I am trying to plan time off of work and wanted to know how much I would need.

Thanks in advance!
Kristen

Kristen Hehn

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Juan Arias's picture
Replies 11
Last reply 1/17/2020 - 2:13pm

My name is Juan, I'm 44, from Chile (South America).
In 2015 I was diagnosed with skin cancer (2,2 mm thickness melanoma). After surgery I had a successful recovery.... However the last 31th December was confirmed that Cancer is back in all my body, with metastasis in liver, lungs, bones, head, even heart....V600 BRAF mutation was also confirmed. I began the same day a treatment with drugs, Tafinlar and Mekinist (Novartis lab), with unbeliavable results...I was almost dead when I get into the hospital and 3 days after was at home with my family.
The main problem to me are the side effects. In the beginning (3rd to 5th days) diarrhea was so intense, so I had a loss of weigth important. But then fever arrives..... 39°C to 40°C (102 to 104°F), chills, uncontrolable tremors, low blood pressure (90/50 mmHg), the emergency team tought it was an infection, so again to the hospital.... blood test, urine test, culture..... But nothing. It seems side effects.
Fever is under control with 1gram paracetamol today, but my main conclusion is I was dehydrated when the fever starts because previous diahrea, this created the perfect storm. Lesson learned: You need drink TOO much water during both diahrrea and fever events.
I would like to know how you are making for managment the side effects of therapy, and of course if you have other "lesson learned" please share with us.
Thank you in advance.

Juan Arias

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Summer S.'s picture
Replies 10
Last reply 1/24/2020 - 10:00am

Hi everybody,

Hope we are all getting healthier and happier everyday!

Stage IV still did not get lucky with either immunotherapy or targeted therapy, we are trying old school chemo for now. Spirits are up though and we are really hoping for the best!

So we have been trying to enroll in clinical trials for a while but without any luck, people basically do not respond to emails and we live in Africa, I almost have given up, if it was not for our two good fellows here Ed and Jackie who halve encouraged me to dig deeper

So, does anybody have a tried method or a direct contact that could help?
We are looking across Europe and US as well

Lemme know!
Love
S.

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Anonymous's picture
Anonymous
Replies 3
Last reply 1/13/2020 - 5:21pm
Replies by: Summer S., ed williams

I was just going through test results of recent labs. i knew that I was Stage IV, but this is the first time I'm seeing the M1C. Did a little Googling to see what it meant, and i understand the definition and it seems appropriate. I'm doing Opdivo/Yervoy and have been doing well on it. Just wondering if the M1C means anything different about my prognosis or how effective treatment will be for me? I've poked around the internet and am not seeing much, so I thought I'd ask the experts here :)

Jennifer

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ahale's picture
Replies 1
Last reply 1/18/2020 - 1:24pm
Replies by: SOLE

I am wondering how many of you have had a personal experience with the use of PRAME PLA pigmented lesion assay by Dermtech, the adhesive patch 4 step test? I have tried to lean about it but feel that the majority of information seems to be statistics and data that is a bit over my head. I did just read that Medicare has now approved the use of it and that most major insurance companies have also seemed to approve the use. I ask for myself, I just had it done where it came back PRAME+LINC+. I know this has been around for a few years but it seems they have dialed it in for a more effective approach. I am on the fence as to it's value, I will update thought's on this as my biopsy plays out.

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Gem_Ari's picture
Replies 7
Last reply 1/18/2020 - 4:32am
Replies by: Tsvetochka, Edwin, lkb, Gem_Ari, tkoss

Hi I have just had my 3rd cycle of key truda. I have 42 lumps throughout my body, not in the liver or intestines. Has anyone else has light headedness or blurred vision as a side effect? The doctors said I have anaemia, low blood pressure and low red cell count.

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adriana cooper's picture
Replies 3
Last reply 1/21/2020 - 5:48am
Replies by: tkoss, ed williams

Giving advice to a newly diagnosed young 21yo lady. (Melanoma needs to stop $@%&*)

I know that older theory was that it should be performed at time of WLE.

https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma...

But I have run across this.

http://www.biomedsearch.com/nih/time-from-diagnostic-excision-biopsy/121...

Is waiting preferred now??

The advice I have provided thus far
"I am sorry to hear about your melanoma diagnosis. Rest assured your future is long and bright. As I may have mentioned to you when we met previously, I have gained a great deal of experience regarding melanoma during my wife's 5+ year journey. As I understand it you have only just had a biopsy (hopefully a punch rather than a shave) and related pathology results. You are at an important point as to your next steps which are very important to proper staging and your available treatment options. Realize that although it may feel like doing something right away is important a few days and even weeks delay make no difference at this point. What is most important is that you take the proper steps with the most educated people so as to get the proper staging which will allow you to get the most current and advanced treatment available. I understand that you have some kind of appointment on Monday, please do not let them cut on you unless they are a melanoma specialist or a surgical oncologist specializing in melanoma. THIS IS VERY IMPORTANT. Very often general practitioners and dermatologists try to cut it out and destroy any chance at getting the proper margins and do not take the proper steps to know the proper depth and mitotic rate which are some of the important factors in staging. A discussion about performing a Sentinel Node Biopsy at this point needs to happen right now as it needs to be done just prior to any wide local excision (cutting it out) and is crucial in proper staging.

I am happy to have a discussion with you and your loved ones at any time. I urge you to refrain from general internet searches about melanoma as there is a lot of outdated and inaccurate information. If you do want to do some research I would recommend starting with melanoma.org which provided us a great deal of support and knowledge. It is important to know that you (and and your loved ones) are your best and most important advocate. Doctors don't know everything (even neuro-oncologist's and melanoma specialists.) Your life is more important to you than anyone else.

Here to help in anyway I can"

Best wishes to all
Thanks Rob

Adriana

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Howdy folks. Been a while still doing trials to find what works. Something I've developed very recently is gastroparesis and also duodenitis and other inflammations. The inflammation is fairly common, but I haven't seen a lot of people talk about the gastroparesis. I'm still adjusting and having to plan out how and when I eat more than I've ever worried about. It's a strange new world.

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Jdc's picture
Replies 1
Last reply 1/12/2020 - 3:36pm
Replies by: guynamedbilly

Sorry it's been so long for upate its been a crazy couple of years and just when it seems like everything is going good life sticks it to you again! So i 5/30/2017 had left lower lobe wedge resection and was started on 10mg ipi about a month later, in meantime I was in middle of switching oncologist to see "melanoma specialist " one mont later they started pembrolizumab. So 1 dose each 1 month apart. (And also recieved radiation to left lingula mass for 1 month), The day of my infusion was having headache that continued to get worse into the following week before i called Dr. Was started on iv steroids and continued on steroids for 4 months (hypophysitis) which damaged pituitary everthing came back except adrenal portion so now, on hydrocotisone for life, scans ok until 2018 repeatedly showing uptake in colon which was assumed to be diverticulitis. Fast forward to june this year, my onco left for another hospital, new onco sucks new pet and ct in july and August show spot in colon suspect for cancer, supposed to have colonoscopy but new onco puts off til november, colonoscopy shows stricture nut everything else looks ok no biopsies taken, i ask why and if maybe there should have been or what was next all i get from docs is "i dont know", so needless to say im looking for melanoma specialist near me . I find hospital an hour away and meet Drs and decide to switch the transfer records and set uo scans for end of January 2020 and in meantime review all past scans, the Monday after Christmas I get a phone call from new Dr saying they found a mass in abdomen on or near simoid colon wall and want me to see surgeon as they suspect it to be melanoma! Have had pain in abdomen since spring of last year that has been concerning. Is this a normal place for melanoma to spread?

Joe

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Sharon93065's picture
Replies 6
Last reply 1/14/2020 - 10:48pm

In a nutshell, diagnosed 4/17, 3 treatments of Opdivo/Yervoy starting May 2016. Then stopped due to high liver numbers.

Jan 2017 to Jan 2019 every 2 weeks Opdivo infusions with Petscans every 3 months, bloodwork every 2 weeks. Newest Petscan
showed still no tumors. So Dr stopped Opdivo. He said that I am one of 3 of his patients that hit the 2 year mark NED. I also
met another patient at Kaiser with a different doctor that is also NED and treatments stopped. We were all Stage 4 Metastatic Melanoma.
PTL!
So now I might be around awhile I need to start dealing with cholesterol, and normal regular life stuff. Arthritis.
Before it was "why buy new shoes, I won't be here next year to wear them?"
I would like to thank other patients for all your support and advise. Bubbles, Ed Williams, the two Jenny's and others.
I still have to take 125 of thyroid meds daily and have fatigue. A little brain fatigue. But I've had 5 brain MRI's in the 3 years, and very high doses of
Prednisone for 4 months to bring my liver numbers in balance.e before starting the opdivo maintenance.
Sharon, Simi Valley, CA
Dr. Wang, Kaiser, Woodland Hills, CA

Sharon, Simi Valley

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MarkR's picture
Replies 4
Last reply 1/14/2020 - 2:32pm

Haven’t posted for a while but thought I would give an update after a challenging few weeks!
I started the Spartazimulab / Ribociclib Trial in Mid December and for a week it had been ok. The trial is a PD1 combined with a targeted therapy taken by tablet. The tablet sucks and makes me feel pretty rough for 2 hours after taking it everyday.
A week into trial I had rode a mechanical bull at my works Xmas do and did quite well but really suffered with pulled muscles the next day. Couple of days later had routine blood tests that showed grade IV levels of CK (indication of muscle damage) team stopped my treatment as concerned my immune system was attacking my muscles. No steroids and fortunately it started to come down on Xmas eve after a hospital admission. Continued to drop over New Year and yesterday I saw a neurologist to get a definitive diagnosis. After all the stress of thinking I was being kicked off the trial the verdict was elevated levels due to extreme exercise and nothing to do with treatment!! Very relieved and now restart again on Monday.
Hoping everyone has a better 2020
Mark

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bethy62's picture
Replies 3
Last reply 1/11/2020 - 5:01pm
Replies by: ed williams, Anonymous

Has anyone experienced either acute and transitory or chronic dysphasia while on Nivolumab?

A positive but practical outlook will carry you through whatever you have to do.

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Habs27's picture
Replies 13
Last reply 1/13/2020 - 7:03pm
Replies by: jbronicki, Habs27, Mark_DC, Anonymous, JudiAU, Bubbles, ed williams

Hey there. I am so grateful to find this forum.
My mother just had a 3cm tumour found in her left upper lobe in December. They proposed a wedge resection, but in waiting a month for surgery it doubled in size and her pain through the roof. They biopsied and found it was Melanoma. She first had Melanoma in the skin 6-7 years ago. They thought they had a good margin so no further treatment at that time.

Now surgery is cancelled (too risky, close to ribs/spine) and we are trying to get her pain controlled (currently on 6mg of hydromorphone every three hours) and are awaiting referral to the cancer agency. She is devastated as she has heard melanoma is so deadly, but the doctors said fast growing tumours are easier to treat.

- Has anyone had good experience with cbd for pain control at least to help taper the opiates? It hasn’t been suggested by the nurse practitioner, but I’ve heard good things. I would consult the team first of course.

- she is very stressed about the news as she thought surgery would take care of this. While waiting for the cancer center and an oncologist, how I can I best help her cope (counsellor?). The waiting is the hardest part for her.

-Any idea what the current treatment for an inoperable lung MET? It sounds like some kind of systemic treatment (immunotherapy or chemo).

-the NP has said this will eventually kill her. Others here have said Melanoma is curable?

Any information or resources would be so helpful. From my family to yours, thank you!

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MelanomaMike's picture
Replies 19
Last reply 1/13/2020 - 11:42pm

Hi family, i once again failed to post, i know how important it is for a lot of you to know whats going on good or bad so we may know our own sence of this battle, (and to know on a personal loving level whats going on) this type of cancer sucks ass, my "Anemia" is pretty bad with the blood loss from my Sigmoid tumor wich is very ulcerated and now at 5.0cm, its at the beginning stages of closing up my intestine, my lower back hurts, i cant have a normal bowel movement, i take stuff but its barely helping, all my Hemoglobin, Hematocrit, MCV and others are below normal. I have no energy guys, i just started a newer med called Adderal wich i hope is better then the Ritalin, the Ritalin made me feel depressed after a couple hours, so far the Adderal doesnt, thanks to it im here now with you. Im finaly gettin my big ass 6.0cm baseball tumor removed from my side, that last trial i was on has rules and regulations for keeping an exposed tumor around for biopsies (despite it coming back necrotic both times yet its growing?? Wth) ??, i took one for the team and kept it til now (very painful) my last trial ended due to disease progression, but im signed up for another trial after surgery, its 2 drugs, both done in the chair, each 30 min thank God! a drug "open lable" ICOS (GSK3359609) and OX40 (GSK3174998) both by none other then GlaxoSmithKline haha, they make my tooth paste Sensodyne! And it works, no sensitivity and i can eat hot or cold stuff! so, maybe these drugs will work to...im still waiting for the call for surgery & i start the testing for the trial next Tuesday, alot of tests, alot of blooddraws, ekgs, etc...i love you all, always have, im just burned out, iv been doing this since 2008, but 2017 with Immunal therapies when i got worse, just hang on everybody, we will get this beat, if i can do it, you all stand a good chance to do the same...i pray for all of us...

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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Rncab218's picture
Replies 7
Last reply 1/10/2020 - 10:46am
Replies by: Bubbles, kst, Rncab218, maryb-z

After 9 years NED I had a recurrence . One lymph node posture. Still stage 3C, no known primary BRAF negative . Did five rounds nivolumab but had to stop due to severe diarrhea and joint pain. Steroids for one month helped but one year later joint pain remained. Rheumatologist confirmed psoriatic arthritis. Most likely from treatment as I do not have psoriasis. My dilemma is do I take treatment for this autoimmune disease and risk a melanoma recurrence. Oncologist wants to do PET scan and then discuss options. Anyone experience this from treatment? Any thoughts or experiences welcome
Thanks,
Cindy

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