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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Replies by: Julie in SoCal

Hi,
I am on this forum for 16 years! Thanks to this forum I found the best oncologist I could dream of (Dr. O'Day). Now with suspected to have lung cancer. Can anyone refer me to such a discussion group with many daily posts and quick responses from patients and caregivers.
Thanks!

Hadar Hannes

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AMcReader's picture
Replies 5
Last reply 8/13/2020 - 10:48am

Hi all, I’m just curious, once you do your scans, how long does it take to get your results back? Also, how do you get the results? MyChart? Appointment? Phone call from your doctor?

Typically, I do my scans and then have to wait until the appointment with my doctor the following week. Sometimes, I will get them through MyChart before the appointment, but lately that’s been rare. Of course the wait time between scans and appointment is just agonizing and I’m wondering if other clinics have a better process.

Thanks!
Amanda

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

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AMcReader's picture
Replies 13
Last reply 8/13/2020 - 2:27pm

Well, I posted that last post when I was in a state of fury of the endless issues I’d had in trying to get the results of my recent scan which had to be moved up because I was dealing with some physical issues...

Anyways, because of that, I should not have been surprised to get a call a couple of hours later explaining that despite 1.5 years of no treatment and all good news I have some new lesions. This time, I seem to have developed multiple lesions in the lining of my stomach. I don’t have the full report yet so I don’t know how many and I will be asking them to do a biopsy to confirm that it’s melanoma (if anyone has had this before and had it not be melanoma PLEASE chime in!!). But, in an effort to be fully prepared, what treatment should I consider next? I’ve done brain surgery, brain radiation, Nivo as a single agent, then Ipi/ Nivo (only managed to do 3/4 treatments because my AST/ALT flew up to 1600/2300) and also had radiation to the lungs once we saw Ipi/Nivo was working. So my question is...do I retry Nivo (I can’t imagine they’ll let me retry Ipi)? Do I try the BRAF inhibitors (I’ll admit that those terrify me because of how the melanoma can mutate but I am BRAF+)? Do I try a Phase 3 trial? What about TILS or intralesionals?

All thoughts, advice and encouragement are appreciated. I have a beautiful 2.5 year old girl and my mind and heart are already racing with anxiety. I hate this damn disease.

Thank you in advance for your help. It is so, so, so appreciated.

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

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Edwin's picture
Replies 1
Last reply 8/13/2020 - 9:36am
Replies by: Bubbles

OncLive Peer Exchange 2020 video with

Jeffrey S. Weber, MD, PhD, NYU Langone Health
Sunandana Chandra, MD, Northwestern Medicine
Adil Daud, MD, UCSF Helen Diller Family Comprehensive Cancer Center
Jason J. Luke, MD, FACP, UPMC Hillman Cancer Center
Ryan J. Sullivan, MD, Massachusetts General Hospital Cancer Center

They discuss melanoma treatments. These videos last several minutes.

https://www.onclive.com/view/advances-in-the-treatment-of-malignant-mela...

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sing123's picture
Replies 6
Last reply 8/24/2020 - 2:01pm

Can anyone share insight either about potential toxicity from the combo treatment or about getting treatment at Mayo? Or stories of success!

I finished radiation to the mets in my brain a little over a month ago and have been off the last reduced amount of (reduced a while back to 2 mg and then 1 mg) Dexamentasone more than a week ago.

Thanks so much again to those of you who've steered me towards this treatment. Very grateful.

Cindy

Diagnosed 4/18 Stage IIIc; WLE on head, started Opdivo 5/18; new spots 10/ 2018; 2nd surgery; Last Opdivo 3/19. 3 brain mets recur 6/20; now Stage IV; SRS + starting Ipi/Nivo 8/17 2020.

I'm Still Here!!!

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AMcReader's picture
Replies 5
Last reply 8/16/2020 - 4:01am

Phew! Yesterday was a whirlwind...here’s what I learned!

- My hemoglobin had dropped to less than half of what it usually is so that explains why I’ve been so unbelievably tired! They believe this is because I have some minor internal bleeding as a result of my new spots. I was able to get a blood transfusion today, so I’m looking forward to feeling more like myself soon!
- The rest of my labs look great —including my LDH which was 143 even with this head cold that I’m fighting through.
- I have 4 new “implants” in my peritoneum. Here is the description from the CT Scan: PERITONEUM: Multiple centrally hypoenhancing nodules in the mesentery worrisome for metastatic disease now apparent. These lie in the gastrohepatic ligament with several adjacent lesions, representative measurement series 2 image 34 of 1.9 x 1.9 cm, lateral to the upper stomach on image 35 measuring 2.7 x 2.2 cm, at the splenic hilum on image 38 measuring 3.1 x 2.1 cm, along the serosa of the gastric fundus image 32, and discrete mesenteric nodule image 56 anterior left upper quadrant measuring 8 x 7 mm.
- Both my current oncologist and my former oncologist who I keep in touch with think this presentation is strange, especially because I’m not retaining any fluid, which is something they both said they typically see when melanoma presents in this way. So, I am getting a biopsy in the next 1-2 weeks to hopefully get to the bottom of what this is. Both of them thought although unusual this could be endometriosis, which would also account for my internal bleeding.

My oncologist and I have already started talking about what the best treatment would be if I have to go that route. She said she would be willing to retry me on Ipi, which I would consider given how quickly it worked for me last time. Also looking at the INSPIRE trial, braf inhibitors and a LOT of other things.

If anyone else has had these kinds of “implants” before, I’d appreciate any advice you have for navigating the aching pain and how to make sure you keep eating enough. That has been a challenge for me over the past few weeks and something I’m even more aware of now that I have to consider going on treatment again.

Hugs to you all!
Amanda

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

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Anonymous's picture
Anonymous
Replies 12
Last reply 8/18/2020 - 11:34am
Replies by: Margokat, Mark_DC, Anonymous, hxcadam, jbronicki, tkoss, Linny, JudiAU, Phyllisd

Stage IIIA Melanoma diagnosed last year. Almost done with Opdivo - ONLY 2 MORE TREATMENTS! I've been quarantining since the pandemic started in early March and I'm going bananas. I don't leave my house except to go to the doctors and get infusions. I stopped going for hikes in a nearby park because the other people there don't social distance or wear masks. I'm super-terrified of getting Covid-19. I've been told by my doctors that I'm in grave danger if I get it, and my family lives far away and if something happens I cannot travel to them. I'm starting to get very down in the dumps and very irritated with my spouse. Anyone else in the same boat? How are you coping? Any advice you can give?

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/20/2020 - 11:31am
Replies by: jbronicki, Bubbles, tedtell1

My husband is stage 4 and is no longer receiving treatments. Hospice has started coming out to our house to access him and help with what time he has left. This past Monday when they came out, they decided to increase his MS Contin (Morphine) tablets from 30mg, three times a day to 120mg three times a day. This seems like a very high amount of morphine. I've asked some of my nurse friends and a medical provider that I use to work with about this. They all agree that that is a super high dose but that they are only doing to make him comfortable. He hasn't started taking it yet because the pharmacy didn't have it in stock. I am scared for him to take this much because I'm afraid its going to keep him knocked out until the end. But at the same time, I've seen how much pain he's in and it breaks my heart for him to hurt so much. Has anyone else loved ones received this high of a dose? They tried a pain pump on him but because he's still mobile, the machine kept messing up and they felt that right now he could stay on the pill. His hospice nurse told me that things were going to get a lot worse but I also wonder if she told me that as a warning to prepare for when he starts taking this increase in morphine. Any input from you guys would be so helpful.

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AMcReader's picture
Replies 2
Last reply 8/26/2020 - 10:56pm
Replies by: Baby_Girl, gopher38

For those following along my crazy August 2020 journey, I wanted to share that after taking my pre-biopsy screening on Monday, last night I was diagnosed with COVID!!! Despite FIVE months of quarantining with a toddler at home alllllll the time while also trying to work full-time. I have not even been to a grocery store since March 13, so how I have contracted COVID is a total mystery to me!

Luckily, I’m not currently dealing with any symptoms from that and in the end it will only push out when I’m getting my biopsy results by 8 days, so I’m trying to be optimistic, but oh what a month!

On a positive note, after experiencing weeks of stomach pain, yesterday I woke up pain free and was able to eat three full meals, take a walk at a metro park (didn’t know I have COVID yet!), chase after my toddler and mow the lawn! By some miracle, I also feel great today. I’m letting this mentally reaffirm for me that these new lesions are not melanoma and instead something else benign and boring! Fingers crossed!

Thank you for following along on my journey, it’s been helpful to have a place to share the details with those who know the chaos of Melanoma.

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

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MarkR's picture
Replies 12
Last reply 8/21/2020 - 9:25pm

Hi All
First of all sorry I haven’t managed to reply to all messages - been away on vacation quite a lot recently (just short breaks away) and been busy trying to organise treatment etc.

Had scans on Monday and results yesterday. It was good news - all tumours have shrunk, including in the brain, and some of the larger tumours in the groin and liver had reduced by up to 85% by volume. Needless to say we were all a bit surprised and such a positive result when success rate is generally about 5%. This makes future decisions even more difficult!!

I followed up with my consultant about IL2 / Intralesionals and the response was IL2 is possible but I would need to travel to another hospital but comment made why do that now when it is working so effectively....? Hard comment to argue against and the same point made about Intralesionals although that seems more difficult to achieve.

As you will recall I had been lining up TILS with Israel being the likely best option for me both in terms of cost and travel so I have asked the Professor there for a second opinion. He is well respected and works closely with Prof Rosenberg in Maryland on TILS so should be able to provide good advice. Failing that it will be a consultation with Weber, but at the moment things are going well but I want to be prepared for the next disaster as feel it will only be a matter of time based on past experience.

All the best
Mark

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Anonymous's picture
Anonymous
Replies 6
Last reply 8/21/2020 - 1:19pm
Replies by: Bubbles, sks2019, JudiAU, Edwin

Providing an update on my mom and seeking hope and advice,
Diagnosed 2018 with vaginal melanoma, Did nivo for 6 months and then ipi/nivo , progressed to stage 4 with liver,lungs and vaginal mets. She did a trial of Niraparib PARP inhibitor which didnt work for her. Now she is in extreme pain in the right side of her body and unable to walk., bilateral swelling in feet Oncologist at UCSF is suggesting Chemo now.. Carbo+Taxol or temador depending on the scans.
Scans were done yesterday to see how much she has progressed since June since her pains started only 2 weeks ago and LDH levels are rising , homeglobin dropping.

she looks very sick now. She is on multiple supplements. I am not sure what else can i do for her. She is afraid of chemo and so am I , seeing what she went through with ipi/nivo and this is going to be more toxic than that plus she will be loosing her hair.

Has anyone tried this chemo , what has been the experiences. and did it worked for you ? Do we have other choices ? What else have you tried after failing ipi/nivo.

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ThinkingPositive's picture
Replies 8
Last reply 8/23/2020 - 5:19am

Hello,
I am starting Keytruda 8/25/20. I chose the every 6 week regimen. Still waiting on my BRAF status. Since my diagnosis of progression last month, I've read most of the forum posts on Stage 4 and Celeste's journal articles, and I appreciate this forum for encouraging knowledge about one's treatment. I am 64 and have a great support system with family, friends, and at work. My dad, 93, is beginning to have a few health issues so I usually go to his appointments with him.

My question is, how will I be able to manage my daily life, along with infusions, in this COVID-19 world? How are all of you doing it, and what advice can you give a neophyte?

Thanks,
Cyn

November 2017- Stage 2A Lentigo melanoma excision and graft . June 2020- Stage 4 progression. Started Keytruda and Zometa August 2020. BRAF not mutated.

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BRR's picture
Replies 11
Last reply 8/22/2020 - 7:08am
Replies by: BRR, MelMel, Bubbles, JudiAU, Edwin, tkoss

Hello everyone in this hard "covid" time!

My father started therapy Opdivo every 4 weeks due to lung metastases (5 in hilar part of his left lung). He feels good. The only consequence after 2 therapies was night sweats. CT is only for 2 months.

My question is whether he should adhere to any particular diet regimen while receiving immunotherapy?
Whether he should avoid sugar and meat as he did before the progression of the disease?
Cofee?
I don't know what to do what is up to us and i have no one to ask the axes. You who have gone through or are going through it all, and so thank you.
We wear masks but no one else wears and there is general chaos in the hospital.
Thanks everyone.

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THMoore's picture
Replies 20
Last reply 8/25/2020 - 10:11pm

OK everyone,
I am in need of some positive reinforcement from all the melanoma warriors in this forum. I just got off a video call with MDA and my liver biopsy came back positive with Melanoma. I have had 4 treatments of OPDIVO and the 5 nodal tumors in my neck decreased in size and were no longer showing active on the PET scan. But a new tumor appeared in my liver in less than 2 months. I was thinking surgery would be an option, but the oncologist explained that he believes there are probably more lesions just not viewable with a CT or PET. So he recommended 4 full IPI/NIVO doses and explained that he believed my K601E melanoma was aggressive. In addition, he said that if this action did not work clinical trials would probably be my next best option. Being confined to a wheelchair, I have other emotional items to deal with.

What I am asking for is positive stories, or advice from warriors who have received the IPI/NIVO course. Can I do this?

Thank You All, Trent

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Anonymous's picture
Replies 7
Last reply 8/26/2020 - 8:34pm

Curious questions because scanxiety is at an all time high. And unfortunately practiced at this - 5 years NED and this is the final one of the trial.

The scan results are posted online but we don't meet with the doctor until next week. Would you want to take a peek at them now or wait? Ahh the suspense!

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