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.

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Replies by: Andrea67, lkb

Nice video from fall of 2019 at ESMO, where Dr. Weber explains typical side effects caused by immunotherapy type drugs called check point inhibitors, examples are drugs like Ipi (Yervoy), Nivo (opdivo), Pembro ( keytruda) or combination of Ipi+Nivo. They call side effects IRAE's (immune related adverse events). https://www.youtube.com/watch?v=37ze8NJGFhk

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Dr. Charles Drake is a leading expert in research into T-cell and following video is from NYC Immunotherapy Patient Summit 2018. https://www.youtube.com/watch?v=YAjIjxjmm8o

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donna conn's picture
Replies 1
Last reply 2/18/2020 - 12:48pm
Replies by: sister of patient

First of all I want to thank all responses to my post asking about issues with taking tafinlar/mekinist. The suggestion of watching you tube videos was especially helpful!! My Dr finally prescribed 10 mg of prednisone daily to help with the side effects and thankfully that has made taking the medication bearable. When I returned for my Pet scan the pelvic tumor had shrunk, however a new spot of intense metabolic activity showed up in my spleen. I just had a CT of my abdomen and pelvis and am waiting for results of that. I’m hoping it’s something other than the spread of melanoma. Has anyone had to have a partial or complete removal of their spleen? Just concerned as that compromises the immune system. Also I’m having difficulty dealing with these continual failures in combating this cancer as well as my declining mental and physical abilities. I’m already on an antidepressant, it just doesn’t seem to help that much. Suggestions appreciated.

Donna

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/13/2020 - 1:53pm
Replies by: ed williams, tkoss

I am over 3 years out from diagnosis as 3a and I am NED. In a recent appointment with my Derm he restated a point that he has been saying consistently through my surveillance, that the research indicates that regardless of when a recurrence is discovered (actively through surveillance or when symptoms appear) the standard of care is the same and the outcome will be the same. Meaning that treatment will work or it won’t.

I am from Canada so I know standards of care differ by country.

Has anyone else had similar conversations/experience with members of their care team

What can be asserted without evidence can also be dismissed without evidence.

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sister of patient's picture
Replies 3
Last reply 2/18/2020 - 10:43am

Just posting this to add to the knowledge bank - in case anyone else is ever searching for info on this topic:

My sister, Leisa, had two skull lesions discovered last fall, after 2 years of being NED. One is located on the inside of her forehead, right frontal lobe area; the other is in the back of the skull and is in an area that is totally inoperable. The first was discovered with a regularly scheduled MRI, the second was found with followup scans that included a bone scan, CT of just the head and repeated MRI. A treating neurosurgeon wanted all scans repeated and then a PET scan done pending a plan to remove the lesion from her forehead (like a WLE but in bone). BUT - great news - after all scans were repeated (no PET), images are showing that both of them have decreased in size by half - yayyy!!!! So, plan now is just to watch and see what they do. They've never really acted like mets - they could actually just be cysts on the bone but of course, with her history, they are suspect. For now, we're happy with this!!!!!

Wishing great things for everyone here!!

Barb

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Ran's picture
Replies 3
Last reply 2/13/2020 - 4:58am
Replies by: Ran, Bubbles

Hello, I am a Chinese and my aunt have been diagnosed with melanoma. We found it late and missed the best period. The worst thing is that the best cancer hospital in China do not allow patient hospitalization because of the coronavirus. It is still unknown when the situation will be better, so we have to find a hospital which can receive patient. Here is her diagnose:

Beijing Cancer Hospital
Disease diagnosis
Name: Huiqin Qu
Gender: Female
Age: 57
Department: Kidney Cancer Melanoma Medical Ward
Admission date: 2020-01-17
Discharge date: 2020-01-22
Work Place: Gaoyang mining company

Brief condition:
1. Anal downbearing distention.;
2. Bowel habit has changed for 3 months.

Diagnosis:
1. Anal canal melanoma metastasis;
2. Diagnosed as Anal canal melanoma stage Ⅳ (it has spread around the anus, iliac juxtavascular lymph nodes, liver and lungs);
3. Director Jun Guo suggest plan T1 Combined liver interventional chemotherapy. Taking into account the late liver intervention, the drugs for this chemotherapy were injected from platinum intravenously.

2020-01-18
Start T1 Plan chemotherapy:
1. Temozolomide 320mg, d15
2. Cisplatin 40mg, d-3
3. rh-endostatin 15mg, d-14
W4Q
Body reaction: feel sick and vomit

Suggestions of therapy after leaving hospital:
1. continue rh-endostatin until 2020-01-31. Keep monitoring blood routine, liver and kidney function(1-2 times/week). If the patient has symptom like fever, fatigue, nausea, vomiting, etc, improve the test in time and give symptomatic treatment. If leukocyte<2.0*10°/L or Neutrophil<1.0*10°L, patient can be treated as G-CSF. If platelets<50*10°/L, patient can be treated as interleukin-11 or TPO;
2. Return to the hospital on time for liver intervention therapy before improve blood routine, biochemical and coagulation functions;
3. Carry out plan T1 chemotherapy in the second period and make an appointment for hospitalization in advance;
4. Review of chest and abdominal pelvic CT and evaluate the efficacy;
5. Subsequent visit.

Leaving hospital diagnosis:
Diagnosed as Anal canal melanoma stage Ⅳ (it has spread around the anus, iliac juxtavascular lymph nodes, liver and lungs)

If you have any suggestions, please let me know. I and my families will appreciate your help very much.

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swissie's picture
Replies 2
Last reply 2/12/2020 - 10:02am
Replies by: hxcadam, swissie

Hi guys,

Sorry for not getting back here, you have helped me in the past through some difficult times.

My melanoma story started in 1991 when i had my first mole removed (which turned out to be melanoma). It was thick, but the only check done at that time was the 3 months check.
Fast forward to 2008, when i noticed a mole changing.
Went to a dermatologist in May to have it checked. He told me it looked totally fine. However, i wanted it removed, which he did in September.

In September it turned out to be melanoma after all. SND turned out to be uncertain, but they thought it was ok.
In 2009 (July) i felt a lump in my lymph nodes, which turned out to be cancer.

I participated in a double blind trial with ipilimumab (10 mg).
After getting a collitis after the 4th infusion i was certain i was on the ipi side. I ended the trial after 8 infusions as a result of side effects.

Last year the trial was unblinded and i happed to be in the placebo group.
So even more than before, happy to be out here.

Yesterday i went for my yearly check which resulted in either the removal or a punch biopsy today.
In the last 10 years they removed one mole which was atypical and i had many pictures taken and reviewed after a couple of months.
Getting nervous...

I'm so glad the developments continued so even if things turn out to be cancer again, the situation today is so much better than it was 11 years ago.

Let's hope for the best. Results to be discussed on the 26th.
Sabine

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DoubleTT's picture
Replies 15
Last reply 2/15/2020 - 9:42pm

Melanoma second metastasis now. First met was to T12 spine did SRS and then adjuvant Nivo for 12 months. 3.5 months later as of this week I have a 6mm tumour on the periphery of my left posterior temporal lobe.
Docs want me on ipi/nivo combination...at the same time SRS with Gamma Knife or craniotomy. I will know Friday full plan. my question is do you have a certain size of lesion for a craniotomy? I am NRAS which is bad I know . So is it better to zap it or take it out ? My met to my T12 spine was zapped successfully. I guess brain Mets are a whole new issue when it comes to treating them? Here in Canada you go to the Brain Mets Clinic at Princess Margaret Cancer Centre and get a second team that just focuses on the brain mets. What am I to expect? ugghhh...

Double TT- Toronto Canada

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ArtandAmy's picture
Replies 9
Last reply 2/13/2020 - 11:46pm

I have been following this page since September but I am finally posting as I am looking for everyone's guidance. Following this page has made talking to my oncologist easier. I always felt like I could have an educated conversation because of everyone on this page. I was diagnosed with 3b back in 2016 and had a few years of clear scans. I was diagnosed Stage 4 in September with cancer in 7 different areas in my body. Bones, Lung, Spine, it's not good. I am BRAF positive, 47 with 3 kids under 10. I want more time. My last scan showed no new cancer but the cancer in my bones (hip., shoulder , spine) show no signs on shrinking. I am on Zelboraf and Collectic (targeted therapy). We discussed giving the therapy more time to work or switching to IPI/NIVO or Keytruda. We like our Oncologist but he is not one of the Melanoma cancer doctors that everyone talks about. I am posting tonight for everyone's thoughts. Should we make the 4 hour trip to Sloan in NYS to see that Doctor Chapman that people talk about? My pain is not controlled and that is tough. The spin cancer causes numbness tingling and all sorts of problems in the digestion area.. I need support so tonight I am reaching out to this great group. Is there hope. Is there better treatment for pain in the spine.. I thank all of you in advance.
Art and Amy in NY

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REESE8590's picture
Replies 4
Last reply 2/24/2020 - 12:21am
Replies by: Ciucco, lkb, REESE8590, Bubbles

Hello everyone, my name is Kevin. Let me first apoligize for the poor grammar, misspelled words or incorrect terminology i may use. I would like to share my story with melanoma along with my current status and ask opinions on what I might expect going forward. I was first diagnosed in 2013 by a mole i had biopsied on my neck. At the time I lived in Maryland and didnt have health insurance. I had to go through state assistance and the care that i received was mediocre at best. I was sent to a surgeon who did an Excision of the site, removed the mole and some of the surrounding area along with some lymph nodes. For whatever reason...probably not having insurance...i was not offered any kind of post op treatment or therapy of any kind.
During recovery from that operation, i moved out to the chicago area to be with family and have been here ever since. In 2015, i noticed a swollen lymph node in my neck, just a few inches away from where my mole removal was. This time i had insurance, so i did some research on the best melanoma doctors near me. I settled on Dr. Gajewski at the University of Chicago. I went in for my visit and they did a fine needle biopsy of the swollen node and it turned out that the melanoma was back. The plan of attack this time was to have surgery, a full left side neck disection. The tumor and several lymph nodes were removed. Dr. Gajewski suggested that for post op treatment, i sign into the immunotherapy clinical trial that was going on at the time for Nivo and Ippy. It was a blind trial and to this day i still do not know which drug i received. I will say...it was a much better experience than my first surgery. it was nice having a team working on my case. So, anyways I do the clinical trial, which was supposed to be treatments for a year, i think. I ended up being removed from treatments because i had a side effect. The CT scan i had after being on the trial for 3 months showed a spot developing on my right lung. So they immediately wanted to have that spot biopsied. I was sent for a CT guided lung biopsy. As many of you know...this isnt the most pleasant expierence. Apparently most of these are done as Outpatient surgeries. Mine was Inpatient and i was kept for 1 night for monitoring, plus i had a drainage tube, that they removed the next day. What a painful moment that was.
The news was great, the spot on the lung was not cancerous. However, i developed Sarcoidosis as a result of the immunotherapy. Certainly news i could live with.

All that said...so far my questions to my fellow patients are: Has anyone else here developed Sarcoidosis ? if so, what has been your expierence with it ? Have you expeirenced any flare ups ? Also, is anyone else here a patient of Dr. Gajewski's ? Or a patient at University of Chicago ? Just curious your thoughts on the University and care youve received there.

So as of this past August/2019, I went almost 4 years with clean scans. My most recent scans, January/2020, now shows a nodule growth on the left lung this time. 14mm x 15mm, along with a couple enlarged lymph nodes. I am currently awaiting a phone call to setup another CT guided lung biopsy. Naturally, I am anxious to find out if the melanoma has metasticised to the lung. Of course my hope is that it my Sarcoidosis flaring up. I dont know how realistic that hope is. I have read that its a possibility. Which leads to the rest of my questions...what have been some of your expierences with development on the lung ? What can i expect as my next treatment if it is determined that melanoma has spread to the lung ? I am 35 years of age and feel great BUT i know that doesnt necassarily mean anything. Below is the reults of my last scan. Thanks to anyone taking the time to read this and respond !! I am VERY appreciative and grateful for any discussion suggestions.

CLINICAL INFORMATION: Male 34 years old Reason: patient in follow up following treatment
on clinical trial. please identify and measure index lesions per recist criteria. compare
with previous images History: metastatic melanoma

TECHNIQUE: Axial CT images are obtained through the chest, abdomen and pelvis after
administration of oral contrast and 100 ml intravenous Omnipaque 350. Coronal reformats
were also generated and reviewed.

COMPARISON: CT dated 8/3/2019

FINDINGS:

CHEST:

LUNGS AND PLEURA: There is a new nodule in the left lower lobe measuring 15 x 14 mm image
#74, series #205 compatible with metastatic disease. Likely postsurgical changes in the
right middle lobe, unchanged. Other scattered micronodules are grossly stable.

MEDIASTINUM AND HILA: Index right hilar lymph node is stable measuring 10 x 11 mm image
#30, series #201. However interval increase in the size of the left hilar lymph node which
now measures 2.4 x 1.3 cm image #35, series #201. This node was measuring 6 x 10 mm image
#43, series #301 on the previous study. More posterior pericardiac node on the left side
is also increased in size within the interval.

CORONARY ARTERY CALCIFICATION: None.

CHEST WALL: No significant abnormality noted

ABDOMEN:

LIVER, BILIARY TRACT: Multiple small hypodense lesions in the liver including the index
lesion measuring 6 mm in the right lobe on image #64, series #201 are stable. Metastatic
disease cannot be excluded.

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Baby_Girl's picture
Replies 4
Last reply 2/21/2020 - 10:52pm
Replies by: Baby_Girl, maryb-z, Edwin

I am stage 3 and my last scan was about 4 months ago and was clear. I will have my 12th and last dose of Opdivo this month. All my scans have been clear since my WLE/SLND January of 2019. My next scan is in a couple weeks. I called to asked and they said this was a head to mid thigh PET scan. The last one I had was whole body. I am wondering what other stage 3 (or stage 4) patients usually get. Whole body or skull to thigh? It seems my surgeon is more aggressive and he has been the one to order whole body scans but my oncologist seems to only order to thigh. Should I call and request whole body or is skull to mid thighs sufficient?

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Hello MPIP group,

Since I know many of you use this information source regularly and it is the key source for all of us for clinical trials, both nationally and internationally, I wanted to share that the National Library of Medicine has put out a public request for feedback on the ClinicalTrials.gov site:

https://nlmenterprise.co1.qualtrics.com/jfe/form/SV_e2rLEUAx99myump

The first part of the survey is geared to end-user feedback and the second part is geared to those (like sponsors/investigators/organiazations) who have to submit study information and subsequent updates and datasets, etc.

I know Celeste pointed out some good facts about some of the current challenges of clinicaltrials.gov and lack of consistent data reporting, etc. Here's a chance to provide some feedback on the interface/system. I know I'll be supplying some of my current issues with the site.

Hugs to all,
Jackie

Jackie <3

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DT1985's picture
Replies 7
Last reply 2/11/2020 - 11:54am

Went to the VA today. Unfortunately, not in situ...

Pathology says it is 1.5mm deep and the doctor doesn’t think it is ulcerative (he is just a general surgeon). They want to do mohs next week as well as STNB. Doc doesn’t think it has spread to nodes yet but wants to be sure. However due to my job, having any type of surgery has major implications/consequences from performing my duties. I have brought all of my pathology reports to an actual Melanoma Specialist. Hopefully they get back to me soon.

So I ask you guys for the time being....At 1.5mm do you think it’s necessary? The mohs I know is needed anyways but is the STNB?

Guess this puts me at a stage 1 or 2. But can that even be determined before the mohs?

As always, thank you everyone for your help.

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ScaredPartner's picture
Replies 7
Last reply 2/13/2020 - 12:17am

Hello all,
Had the most amazing consultation with a new group of doctors this morning looking for a new way to save my partners life.
I try my best to stay on top of new treatments, but the one they offered this morning was something I haven’t heard of yet, and I can’t find the trial number when researched.
TCD14678

This will be a phase 2b trial, not officially opened yet, but within the next week.
It is a PD1 combined with a CDK 6/8 inhibitor.
The idea sounds great, but it’s the unknown.
I believe the pd1 is cemiplimab which I haven’t seen use of in melanoma specifically yet.

Do any of you have any info on this?
This is of course a trial after he progressed on the usual ipi/nivo, and now targeted as well.

Just looking for anything at all.

Thanks!

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jennifer83's picture
Replies 6
Last reply 2/13/2020 - 9:51pm

Hello,

As some may have followed, I developed hypothyroidism after my third ipi/nivo treatment. for stage IV melanoma (mets in liver and lungs) I'm taking meds for it now.

My nurse said that my liver levels are elevated, but not enough to be too concerned about yet. Just wondering if anyone knows when I should become concerned?

My ALT at last test was 51 U/L. It's crept it's way up from 17 to 51 over the last four months.

My AST at last test was 49 U/L. It's crept it's way up from 22 to 49 over the last four months.

Any weigh in on when I should be concerned would be great. I go for my scans Saturday and am hopeful for good a good response!

Jennifer

Primary 1B in 2014 - WLE and SNB negative. Recurrence Dec 2019 - Stage IV with mets in liver and lungs. Currently on ipi/nivo combo @ MD Anderson (Houston, TX).

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