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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mrsaxde's picture
Replies 2
Last reply 8/21/2017 - 10:11pm
Replies by: mrsaxde, Anonymous

I got the results of my CT scan at the end of the first 45 day cycle of the anti-LAG-3/Opdivo combo trial yesterday. I'm going to classify the results as "mixed."

When evaluated using the RECIST 1.1 protocol I have been classified as having "stable disease." There are two "target" lesions. One grew by 7% and the other was unchanged, as measured using that protocol. So that fits the qualilfications for stable disease. But two other, "non-target" lesions were classified as " more prominent.

Looking at the standard radiologist report of the scan, there is currently no cancer in any of my organs, which of course is good news. The lung nodules that were killed by Keytruda are gone and nothing new has taken their place. But several lymph nodes in my chest are all larger. I am hoping that is due to something like t-cell infiltration. I didn't see Dr. Sharfman yesterday, I saw the nurse practitioner instead. And she told me that is certainly possible, and added that I am "still very early in the game."

So yesterday I received the first infusion in cycle 2. I have a ton of questions for Dr. Sharfman in two weeks, mainly how I should be feeling about these results. One bit of good news: my lipase has returned to normal. I guess I'll have a clearer picture of everything around the beginning of November.

-Bill

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Good morning,

A research firm has reached out to the MRF seeking input from advanced melanoma patients who have experienced gastrointestinal symptoms while on checkpoint-inhibitor therapy. Interested patients who are eligible and selected to participate in the one-time interview study will be compensated for their time. For more information about the study, please call Evidera and ask for Julia Ingram at 240.235.2502.

Sincerely,
Adam, MRF

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/17/2017 - 1:34pm
Replies by: Anonymous, SABKLYN

I don't know if it's the right place to post something like this but I'm really confused about this and want to put my mind at ease.
I have two scary moles removed before 6 months from my left leg and lower back. well, the results came back fine which final diagnosis says benign compound nevus with no cytoarchitectural atypia present. I was relified, but for the last month I'm feeling a little swelling in left leg. It's not obvious but my left knee feels fatter than than the right I'm really scared that the pathologist missed a melanoma and now it spread to my lymph nodes. Is it possible?. the two moles apperead during my pregnancy and were new. What I can do to be in the safe side?

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I wanted any input on this chemical known as Dioxin. Im a child of a Vietnam Veteran who was exposed to quite a bit of it, it was  knicknamed "Agent Orange", Agent Blue" Agent Pink" etc. because,  well, Agent because it was a "chemical" that produced an effect,  and the Orange Blue Green  Pink  etc.was the color of the particular "barrels"  it showed up in {randomly}...Just a thought...Mike

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MelanomaMike's picture
Replies 4
Last reply 8/18/2017 - 2:34am

Hi Y'all, well, i saw my Oncologist yesterday and i came to the decision {with her as well} to just do the damn surgery. Like ive stated in my introductory post when i first knocked on your door here at MRF, I was {and still am} so done with surgeries! my original personal plan was to do something different {Chemical Therapy, Imm Therapy etc. cuz obviously surgeries arnt doing the trick {tumors come back every 2 years on average} so, i thought do that. Then my last surgery point "opened up" my left leg shin area {i squatted down & it tore open} and just that alone would delay any therapy for atleast another month. So, i said screw it! this way the tumor is  taken out in a matter of "hours" versus a possible year with  Chemo/Imm approach. And of course the added benifit of knowing "exactly" what it is & what where up against if therapy "is" still needed {most likely}...i dread the surgery I really do! and thats what my whole fuss has been about!i would have already started Interferon or whatever if it wernt for tearing open my leg! maybe a sign from God? ya never know...Thanks for allowing me to share my update w/you and hope yer all doing good or atleast stable..love/respects Mike,,yes

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Nemesis's picture
Replies 6
Last reply 8/23/2017 - 9:33am

T1b here, 9 months post WLE and SNB. My melanoma was discovered during my post partum period (6 months after giving birth). I am not sure if a second child is off the table for me at this point. I want to wait for two years before trying to conceive, but I have read studies that say melanoma is worsened by pregnancy, therefore I am not sure if I should even risk it.

What would you do in my shoes?

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baesill's picture
Replies 4
Last reply 8/17/2017 - 6:06pm
Replies by: J.bun, jrtufo, Anonymous, lindanat

Hi everyone,

So I'm about to start this combo and I feel really confused about the sun sensitivity thing. It sounds like I can't let sunlight hit my skin...ever....even with sunscreen. Do I just have to stay inside now? Is it possible to go swimming outside? Or can I take my kids to the park? 

How do people adjust to this?

thanks for the support everyone!

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Bradley75's picture
Replies 4
Last reply 8/15/2017 - 10:26am

I am about two and a half weeks post op from having a tumor removed from near my spine.  The tumor was located at T-5 and was about 2 inches.  It had grown into a nerve and some bone so the surgery involved cutting a nerve and grinding some bone.  All in all things went really good.  Recovery has been painful, but it is getting less by the day.  Tomorrow is a big day with stitch removal, radiation simulation, and starting Keytruda once again.

Now for the strange part.  I have been on Keytruda for a few months.  It worked well on my lung mets, but it wasn't stopping the T-5 tumor/  When the surgeon got to it, he said it was like "snot."  I had never heard of that before.  I asked several questions of my medical team about that and the best I can tell is that the Keytruda had softened the tumor.  He said it makes it easier to remove more when it is soft because they can use suction to suck it out. 

I am sharing this because my PET showed no real sign that the Keytruda was working on that tumor.  However, when they got in there during surgery, it appears the opposite is true.  I find encouragement and new hope here.  The Keytruda was doing more than they could detect with MRI and PET. 

Keep Fighting,

Brad

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Jabujj's picture
Replies 17
Last reply 8/16/2017 - 5:36pm

So as some of you have seen in my original post, my fiance was diagnosed with melanoma...the biopsy revealed,.86 thickness, clark level 4, mitioc rate 1, no regression, no signs of vascular invasion or ulceration or sat mets.

Now, I am facing a dilema. Through my family doctor I have an appointment with a plastic surgeon on aug 24th to do the WLE. This doctor runs a weekly melanoma clinic.

In my haste and before this appointment was scheduled I had found another plastic surgeon who treats melanoma (not specifically) at his private clinic. We have an appointment with him on the 17th. 6 days sooner...

Both are very good doctors from what I have read (none of them are specialist in melanoma but both have experience with it).

My question is: There is only been talk of a WLE..her family doc was not to well versed in melanoma...we would like a Setennial lymph node biopsy because of clark level iv...is this something that would be offered in a clinic setting (as it is not a hospital). Janner said that the node biopsy has to be done at the same time as the WLE so we dont want to show up at the surgery appointment only to not go through with it because the node biopsy cant be performed. I am going to phone on monday but it is so hard to contact people in the know and get stuff answered.

Second q: my fiances family doc mentioned of keeping it with the appt on the 24th because it might make things more streamlined because she knows that dr. In your opinion better is the speed of the local WLE more important right now?

Regardless we want the sentinal node biopsy but dont have an appointment anywhere with an oncologist or in a hospital, is this something that can be done outside of a hospital setting?

Confused.

Thanks

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ryanbkyle's picture
Replies 12
Last reply 8/15/2017 - 11:38am

I'm Stage 3A and completed my 4th Yervoy (10 mg) infusion in June.  I got through all four pretty well until last month when I developed some side effects.  Come to find out, my pituitary gland stopped working and now I'm on thryroid medication and sterioids for the rest of my life.  I'm feeling great now, but am wondering if I should go through with the 3-month maintenance infusion that is coming up in September.  I'm worried about additional side effects developing.  Can anyone offer any advice? 

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Raluca's picture
Replies 10
Last reply 8/12/2017 - 3:21pm
Replies by: Raluca, Nemesis, Anonymous, UBContributor, Nanners10

Hello everyone ,

I have been diagnosed last September with T1A melanoma on abdomen, breslow 0,37, Clark 3, no mitosis, no ulceration , no regression . After WLE only check-ups every 3 months including derm control, blood tests and ultrasounds. Everything ok but now I am feelin a pain in the groin next to the surgery. The ultrasound of the nods reveals no problems, but I am scared. I don't know how a malignant node feels like, is it painful?

thank you! 

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Jabujj's picture
Replies 15
Last reply 8/19/2017 - 4:43pm

Hi everyone,
Its been 4 days since my fiances diagnosis and I havnt been able to sleep. Her report indicated:
.86 breslow, clark level 4, 1 mitotic rate, no ulceration, no regression, and no satellite mets

I was under the impression that generally anything under 1 breslow has a better prognosis and that they dont use the clark scale anymore...but after reading this study it strongly implies that clark does not matter in most cases, except with clark level iv because it is a special subset...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1250844/

why did they get rid of clark when it details how deep the cancer is and closer to the bloodstream, hence a better chance of spreading. The doctors addressing my fiances case are not rushing it because they are going strictly off of breslows thickness...

So tired and worried...

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MelanomaMike's picture
Replies 2
Last reply 8/11/2017 - 12:58pm
Replies by: iskitwo, jennunicorn

Hi everyone, hope yer well and kickin but through treatment. I just wanted to check in & let you all know (if you dont know already) about a real good, new program on television called First In Human airing on the Dicovery Channel. Its hosted by none other then Jim Parsons of The Big Bang Theory (which is a great pick for a host!...Did i mention i split open my last surgery? A week after staples where out, i knelt down & split! I thought it was my shorts lol..so, treatment is delayed because of it as i attend the Wound Clinic twice a week for cleaning and packing/wrapping...just great..ill kerp ya posted, i see my Oncologist Monday...take care..Mike...

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Hi everyone, hope yer well and kickin but through treatment. I just wanted to check in & let you all know (if you dont know already) about a real good, new program on television called First In Human airing on the Dicovery Channel. Its hosted by none other then Jim Parsons of The Big Bang Theory (which is a great pick for a host!...Did i mention i split open my last surgery? A week after staples where out, i knelt down & split! I thought it was my shorts lol..so, treatment is delayed because of it as i attend the Wound Clinic twice a week for cleaning and packing/wrapping...just great..ill kerp ya posted, i see my Oncologist Monday...take care..Mike...

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Sharon93065's picture
Replies 13
Last reply 8/18/2017 - 12:51am

y blood panel came back.  My liver nunmbers so  high that as i was reading them my oncologists called me.

Put me on Predisone starting at 5pm today. Pharmacists said i will be up all night.  That will be ok if i had any enery.  Then 5 at noon tomorrow, and 5 Sat morning.

I am so said that i did not make it to my 4th treatment of Opdivo/Yervoy.  I also will have lab work every day watching my liver numbers.  He asked how i have been feeling.  Oddly enough i feel fine except extremely tired.  No nausea, diarrhea, fever etc.  (Please Lord and do not let it start.)  I  have read on this forum that the Immunotherapy can keep working in me even without getting the 4th treatment.  And i can still get maintenance.  Dr said let's get liver numbers down then we can look at our options for further treatment.

Last January before i knew i was sick 8 of us ladies booked a 8 day Viking River Cruise Paris to Normandy. 

I didn't get the insurance because it was costly and you didn't get  your money back on this one just a credit.  Should have gotten outside insurance but too buy at the time.

Anyways the timing today is good because in 2 more days i would have lost 35% and not I'm only losing 15%.

Total cost of trip was only $2599 including air.  Oh well, my health is more important.  I cried when i heard my 4th treatment was canceled.  Thank you all for your support and important info i have gained thru this forum.  

By the way i did test positve and can get the Targeted Therapy.

Sharon from Simi Valley CA

Kaiser Woodland Hills, Dr Wang Oncologist. 

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