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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arthurjedi007's picture
Replies 16
Last reply 11/10/2014 - 1:33pm
Replies by: RJoeyB, Carole K, arthurjedi007, Mat, Anonymous, odonoghue80, tschmith

Just got a call from June Kryk. She's saying I need a 4 week washout period before I first see them. Does that sound right? The paper work form said to stay on my current treatment until I get accepted into a trial. I would have thought the 4 week washout period would be after the first visit not before. Am I missing something?

Basically otherwise she explained the process like I expected. They get all the scans and stuff they need. I go for the first visit where they remove one tumor. They grow the cells and I go home. Once the cells grow which she said varies from 3 to 6 weeks. Then I go back for a second visit for 3 weeks. Week 1 is the chemo to wipe out my white blood cells. Week 2 is getting the new cells and 3 days of IL-2. The rest is recovery. The 3rd visit is 4 weeks later for scans.

Oh for those who know her June Kryk is retiring and the lady who called me yesterday Jessica Yingling is her replacement.

Artie

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MixtaJones's picture
Replies 5
Last reply 11/10/2014 - 2:59pm

Hey everyone,

Long time since I have been on here. As a update I finished my last Yervoy treatment on July 11th. I just had my first 3 month CT scan and the orginal tumor is no longer there and there are no signs of it spreading to other  parts of my body. YAY!

My question is for those of you that have had Yervoy treatment and it has failed. Did it fail imediatly as in the tumors never shrunk or did it work initially then tumors came back further down the road? I am obviouly glad that the scans are clear but still not completly relaxed becuase I don't know how yervoy work long term.

Philippians 4:13 "I can do all things through Christ who strenghtens me"

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Steve2142's picture
Replies 3
Last reply 11/7/2014 - 1:24am

Hello - 

My doctor ordered a brain MRI after the petscan showed widespread metastases in the skin and organs.  The MRI confirmed several mets in the brain.  Any explanation on what all below means would be very helpful:

-9mm rim enhancing mass with moderate edema

-6mm

-3mm

-3mm

-7.4mm

-Several additional foci of flair hyperintensity

-Multifocal osseous metastatic deposits involving the skull base

 

Thank you!

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MattF's picture
Replies 2
Last reply 11/6/2014 - 7:30am
Replies by: tcell's wife, kylez

Mixed results....

 

some tumors shrank......one ot bigger with swelling and an associated hematoba in my right frontal lobe.

meeting nuerourgeon on Fri.....

think the swelling and bleeding bother doc worse than the actual still relatively small lesion.

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

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yazziemac's picture
Replies 8
Last reply 11/7/2014 - 4:19pm

Hi

I've posted before and read the boards often.  My husband, Peter, had a CAT scan today and I was told an hour ago (when I got home from work) that his melanoma has spread to his brain.  A 2.5 cm tumour in the right frontal cortex ( I think...)  We will be meeting with the radiation oncologist tomorrow at 9AM.  I'm so sad and scared, my husband is only 56.  But, I am inspired by all of the wisdom and experience here.  I'm trying to be brave, but I'm failing quite miserably.  His original site was on his neck and he's had 2 surgeries and 33 radiation treatments to date.  His neck dissection was in Feb/14 and radiation ended in late May/14.  His CAT scan in the summer was clear. So, any words of wisdom before our appointment tomorrow?  Thanks in advance :)

Yasmin

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HappyBeingPale's picture
Replies 1
Last reply 11/5/2014 - 4:54pm
Replies by: Kacey79

Hi All! 

Four years ago I was diagnosed with melanoma but was one of the lucky ones and caught it early enough that all I needed was wide excision and visit to the derm every 3-4months. I have moved a lot recently so I'm seeing a new derm this month so I know I'll have answers soon enough but was hoping you all could ease my mind :) I have two moles on my back that seem to be fairly new, but the odd thing is there are very close together. As far as I can tell (I had my friend take a picture for me) they are not actually touching, which I think is good news. Has anyone ever had two moles that grow so close together that they did a biopsy for them? 

 

Thanks!

S

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Kerrid74's picture
Replies 6
Last reply 11/5/2014 - 11:07pm
Replies by: casagrayson, Janner, Anonymous, Ed Williams, Kerrid74

So, I was diagnosed with stage 1 a invasive melanoma on my my right upper arm.  Diagnosis was made after WLE and sentinel node biopsy- which were negative for evidence of metastasis.  The surgery was approx. 6 weeks ago.  Life going on, yada yada yada.  Around the same time, my nerves were shot to say the least, I was having some pressure from a hemorhoid I have had.  Here's my crazy question.... I am completely and totally freaking out that it somehow could have spread and or I have anal melanoma.  Had anyone had cutaneous and non-cutaneous melanoma simultaneously or has anyone had cutaneous melanoma that spread to anal melanomA?  I see the gi doc in a week.  But I'm a nervous wreck.  I understand they are two different types if melanoma but they are still related.  Help!? 

 

 

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Hello all

on the last meet with my wife oncolog i understood that he would like to study the carachteristic of folks who responded to Z for a long period and put the stick at 18 month (still far target for my wife btw). I would like to report him how many of you had progression or the drug stops to work  after this point. Maybe it is useless and he has this statistics, but it is for free.

TY for your contribution.

Antonio

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brittanyx's picture
Replies 2
Last reply 11/5/2014 - 8:06am
Replies by: akls, brittanyx

A month after I started interferon I had 2 periods in a month. And no I haven't gotten one in a month. Can interferon mess with your menstrual cycle?

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I was hoping everything would be shrinking and the pd1/radiation combo would give a good story of how they worked great together for me. True to form today Dr. Linette my local doc gave me yet another bad report. The only good one I've ever got was in August at Mayo. But I must agree with what he is seeing, what I'm feeling and his treatment recommendations.

They weren't able to compare it to the Mayo scan in August but with their April scan.

What really suprised me is the T12 and L2 they radiated says "There is persistent intense uptake with the T12, L2 and L4 vertebral bodies." I assume that means the radiation didn't work? Radiation was completed 6 weeks ago. If that's so then I wonder about my head because all the report said was it was new because they compared to the April scan where it didn't exist yet. I was thinking about seeing if they could radiate my knee and maybe my pelvis but now I dunno. About 10 days ago my knee started hurting like crazy making it very difficult to walk. The scan shows a tumor in my knew and the growing one in my pelvis which also hurts a lot.

So overall stuff has grown although some stuff has shrank. The huge one in my shoulder still has the necrotic center but the tumor has grown and changed shape to 11.5 x 7.1 cm from 8.7 x 7.7 cm in August. Other stuff grew too.

So I dunno. I'm very depressed. He did talk about ERK or ERG trial. Whatever it's called. It's like BRAF just further down the gene chain and is phase 1. The BRAF stuff never did anything good for me (ie: never shrank nothing) so I doubt if that would work for me either. Although the taf/mek combo did keep a lot of tumors from growing just never shrank stuff. Neither did zel.

He also mentioned NIH immunotherapy (ie: TIL ACT stuff) which was already my plan B so I called the number they gave me and left a message. I dunno if I'll get in. They said it is very difficult to be accepted. With my leg acting up I just dunno. Maybe this latest dose of PD1 will make it better.

So that's my news. Since some things are still shrinking that means the PD1 is doing some good so they are keeping me on it. So I got my 9th dose today.

I'm sorry. I've always tried to be uplifting with a never quit attitude. Now I'm just very depressed and having a hard time taking all this in. I'm trying to focus on the good Rosenberg stuff. Like it's basically a 50/50 chance. 1 in 10 are cured long term. 4 in 10 have long term durable response. At least that's what I seem to recall I read. I know we've all been through so much. I just dunno if I can dig even deeper for one final treatment. Maybe I'll feel better tomorrow. It's been a rough couple days with scans yesterday and this news and stuff today. May Jesus grant me the strength and courage and whatever else I need to get into and through Dr. Rosenberg's treatment.

Artie

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Gordknight's picture
Replies 2
Last reply 11/5/2014 - 8:26pm
Replies by: Gordknight, Janner

Got back from the WLE on my neck for my stage 1a melanoma.  Praying that this is all behind me now.  Have an appointment on monday with the surgeon to follow up and get the results if they are back by then.  I wanted to thank everyone for their support in my earlier thread.  Especially to Janner for being the voice of reason in a lot of threads.

Now I just need to stay offline and stop reading stories about stage 1a'ers that progress to IV within a few years. 

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Anonymous's picture
Replies 12
Last reply 11/11/2014 - 10:08am
Replies by: oldblue, Squash, Ginger8888, Annalive, Anonymous, JustMeInCA, Janner

My father had his primary melanoma tumor removed in May 2014 by his general practioner. The spot was on his trunk. Once the biopsy confirmed it was melanoma, he was then referred to a general surgeon to have larger margins removed. In hindsight, he should have been referred to a medical oncologist for surgery rather than the doctor that did the surgery. At his first visit to a cancer center he was told the stage was a 'risky' IIC. On the Breslow scale it was a Stage V and a Stage IV on the Clarks scale. At the first visit, the oncologist told my dad the treatment options for melanoma were not great. The treatments often have harsh side effects without a lot of proven success stories to show they are succesful in extending life. Last month he had an axillary dissection to remove lymph nodes that were detected in a recent scan (the lymph nodes were on the same side as the orginal tumor and under the armpit area). The biopsy of the lymph nodes were positive for 3 lymph nodes with one being fairly large. His cancer is now classified as a Stage IIIC.

Last week he had a visit with the radiation oncologist where it was suggested he has radiation on the trunk where the original tumor was removed extending up to where the recent lymph nodes were removed. He was also told the chance of the melanoma spreading to the brain was fairly likely. He meets with the radiation oncologist later this week as well with the chemo oncologist to discuss treatment options.

My father is in 70's. He is still active (despite having a bit of a hard time recovering from the two surgeries listed above). He also has the following health concerns: high blood pressure, enlarged heart, hardening/calcifications of the arteries, gallstones, cyst on a kidney, colon diverticulosis, background of pulmonary emphysema, small lobe on lung (too small at this point to determine on the PET scan if it's cancer) and bronchiectasis.

While I wish my father would get a second opinion (going to a hospital where there's more of a focus on melanoma), I don't believe he will. When I read the messages on this board, there are obviously treatments that are working for lots of people and I would like to think there's a treatment option that is suitable for him.

I'm curious if any of you have relevant information for someone in a similar situation. After we watched my mother pass away from colon cancer 5 years ago, we know that quality of life is something we shouldn't take for granted.

My questions are: given the area they want to do radiation on, how tough are the side effects - 6 weeks for 5 days a week? I also question why they are wanting to do radiation since he's been told he has an agressive form of melanoma and the radiation is only treating a targeted area. I believe they will also suggest interfuron as a treatment option. The oncologist has already said the side effects can be tough and many people aren't able to tolerate them. For someone around my dad's age with less than perfect health, are there many success stories that show it works without having harsh side effects? Should my dad deny any further treatment, do you know of studies that show how long it takes for the type of cancer he has before there's a recurrence? Should a recurrence happen, is there typically an extended amount of time before the cancer causes such side effects that it's hard to go about your daily life?

I know some of my questions aren't easy to answer but hoping someone in a similar situation has information to share. I'll be going to the doctor with my dad later this week and want to make sure I'm helping to ask the right questions. There's a lot of information to find online but it's when I'm trying to combine multiple aspects that it's harder to discern the information.

Thanks for taking the time to read this.

 

 

 

 

 

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