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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holy moly melanomy's picture
Replies 9
Last reply 9/23/2014 - 1:24am

Hello lovelys!

I've been able to hold most of myself together during these last 19 months A.D. (After Diagnosis).  It took me a bit to get back to stable ground and I've been doing just fine for about the last year or so.  However a recent "bump" in the road....or I should say "lump" on my back...threw me back into darkness of Mela-Land.  My husband found a mass on back about an inch or so between my spine and my WE scar the first of this month.  I'm fairly certain it's just a lipoma, but of course there is that evil voice in my head that is telling me the beast is back.

 

Curious if anyone in Southern CA has a support group that they go to?  I went to one about a year ago after I had an enlarged lymph node pop up on my neck/base of skull.   Although the ladies were super nice - I just didn't fit.  They had all been together for like 10-15+ years and about 95% of them were Breast Cancer survivors as well as they were all 65+ years old.  I'm not discriminating on age or cancer, I'd just personnally rather attend a meeting for Melanoma, or at least a group with a few Melahomies.

I'm open to all suggestions :)  Thank you!

 

~Amber~

holymolymelanomy.blogspot.com

"Everything happens for a reason"

holymolymelanomy.blogspot.com

 

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Anonymous's picture
Anonymous
Replies 10
Last reply 9/22/2014 - 9:09pm
Replies by: Anonymous, Squash, Annalive, Tim--MRF

I have been looking at some links and a documentary about the use of a drug he developed privately. My search started as i was looking for research and studies on the use of cannabis for melanoma. Does anyone heard about Dr Burzinsky's Clinic in Texas? There is so much debate about his approach and some conspiracy theories attached to it that it is hard to come to a sane conclusion. My son is receiving IPI and is in stage 3C, so I keep looking for alternative treatment should we find ourselves in that place. Dr Burzinsky seems to have had some success (25%) success with cancer patients with brain tumors who do not want to take the path of radiation for many good reasons. Thank you for your help and time.

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Ying's picture
Replies 7
Last reply 9/22/2014 - 6:13pm
Replies by: ecc26, Ying, Anonymous, Linny

Hi everyone! My mom was diagnosed as having melanoma in 2011, recently developed to Stage 4 with metastasis to lung. She has NRAS mutation which is very very rare here in China, and when we went to the best melanoma treating hospital, we learnt that currently there's no specific drug for this mutation type. We are very disappointed. 

 
I did quite a lot research on website and seeking any possibility to get medical treatment aboard. I've been to this forum for several months already but never posted anything. This is my first post. Could anyone suggest some good melanoma treating centres in any countries especially in U.S. and Australia? We desperately need this information.
 
Thank you!
 
Ying

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Josh's picture
Replies 11
Last reply 9/22/2014 - 10:37am

Hello,

 

I'm currently eight weeks (2 infusions) into the Merck Anti pd-1 trial, and my symptoms are getting much worse (crazy pain in knee tumor, night sweats, groin mets getting larger).  I'm writing because I really feel like things are going downhill quickly so I'm considering going off the trial and getting on some other treatment, however, I know that this pd-1 treatment is among the most promising out there. So, for people who have responded well on an anti pd-1 trial, my question is did any of you get worse after the starting the pd-1 infusions, only to suddenly get better? In other words, did anyone feel like the drug wasn't working, only to have it start working after the 3rd or 4th or 5th infusion? Thanks a lot everyone!    

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ecc26's picture
Replies 7
Last reply 9/22/2014 - 7:04am

Hello everyone!

I've been pretty absent for a while. I was accepted into Merk's PD-1 EAP back in June right after a round of gamma knife on several small brain mets and had been waiting until my recheck scans to give an update, even though things seemed to be going well. Those scans happened on Sept 2, and I got the results Sept 3. I had been hoping to just be able to post a good update, and as far as the chest/abdome/pelvis it was great news with all previous tumors being reduced in size by at least half, if not basically gone. Unfortunately, the MRI was pretty terrible with 4-5 small, but new mets and one large right frontal mass that again was new but the growth had been so incredibly rapid it was too large for radiation, had central necrosis, and had started to bleed- none of which are ok.

This result sent things a bit into overdrive, especially since I had not had any signs of there being a problem in the brain- no symptoms at all (which I realize is rather lucky) but there was not going to be any waiting around for something to pop up. So after quite a bit of scrambling to get the course I was just hired to teach a couple of months ago in order I had a craniotomy on the 17th (Tuesday). I spent 1 night in ICU (as was expected) then was doing well enough that they moved me out to a regular recovery room. I was expecting to stay there until at least today, more likely tomorrow, but they surprised me by releasing me yesterday afternoon. I had not had any symptoms prior to the surgery and was placed (still on) prophylactic anti-seizure meds and steroids to try and prevent any issues (which are continuing for a while post-op) but even I was surprised about how well I was doing and once the physical therapist cleared me to be able to handle a few stairs they let me go. For which I was very grateful- not only to get somewhere more restful than a hospital but also because my "room-mate" in the surgery recovery room was starting to reveal that she had 25+ years of TB exposure and they had removed a large lung abcess the day after my craniotomy. I have enough problems without adding TB to the list so the second they said we could go we ran. I'm being careful, taking my meds, and not pushing myself too hard, but pretty pleased at how good I feel, how little pain, how good my appetite is, etc. My mom is going to come up and stay for several days starting Sunday and that will be helpfull so that my husband can get back to work without worrying about getting me around, the house, or anything else. 

Mostly I get some occasional, relatively mild and short lived sinus pressure, the incision site looks good (well, kind of gross, but not infected) but is pretty tender to the touch and there's so much gunk (soap, etc) in my hair that I can literally hear it crackle on my head, but I'm feeling pretty lucky all the way around, I think. Technically I would be due this coming week for another PD-1, but that may not happen- I need to have an appointent on Tuesday to check in and see what the status of that may be- we'll see. Otherwise, I'll be headed back for another gamma knife in a few weeks to treat the smaller ones and the healing site from the craniotomy (want to give that area a little bit of healing time first). I'd kind of like to not miss a PD-1 dose, because it's going so well everywhere else, but we'll see what happens. 

Things have been so crazy I really haven't even had much time to read this forum, let alone respond to anyone, so I am sorry for that. I hope that everyone is well and moving along in a positive direction. I've got a couple of days here where I'm not supposed to be doing much though so perhaps I can catch up a bit.

 

Anyway, best of luck to everyone out there battling this very frustrating disease!

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Anonymous's picture
Replies 9
Last reply 9/22/2014 - 6:25am

Plus the crazy story of our travels...if you are interested....  Most importantly!!!! - new cohort added to my trial for NED folks...giving ipi and Nivo!!!!!!!

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/my-melanoma-stats-and-update-on-my.html

Love and best wishes to all, Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Muru's picture
Replies 5
Last reply 9/22/2014 - 4:16am

HI All,

I have Mucosal Melanoma in LaryngoPharynx + stable tiny nodules in Lungs area and Summary of my treatment  are as below:

- Undergone removal of larynx surgery 

-3 cycles of DTIC+Cisplatin+vinblastine - Not a good response

-2 Doses of Yervoy and failed to respond

-Radiation to reduce the pain

-8 cycles of IL-2 and it gave some positive response but it did not last for long. After stopping the medicine for 1 month, the disease reappeared again now.

Now looking at PD-1 as the option to go, as my Dr suggests this new medicine. We have few questions about PD-1

- What is the normal dose to be given. Is it 2 mg/Kg?

- Any idea about the price. As i live in India, i may need to import it

- What is the normal treatment period. For how many months we need to use that.

- Is it effective for Mucosal melanoma

- I am BRAF negative, Will that be a concern to take PD-1

Please help to provide the answers. It should be of great help.

 

Thanks,

Murugesan

 

 

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gemmy32's picture
Replies 20
Last reply 9/22/2014 - 2:28am

Hello there wondering if anyone can help me, my mother in law has been diagnosed with a stage 4 maligment malenoma in her lung, she is awaiting doctors to confirm her treatment plan, does anyone know of any drugs that can be taken that work really with with the malenoma. What would be the best treatment for her? She is only 52 has four children an 8 grandchildren, she doesn't want to die it's devastating. 

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bluevit's picture
Replies 7
Last reply 9/21/2014 - 7:32pm
Replies by: bluevit, Pamelarun, Janner, Anonymous

Hello,

I have a biopsy scheduled in 2 days of my thumb nail.

Is there anyone that has experience with subungual melanoma, or Acral Lentiginous Melanoma?

Please see this picture of my thumb.

http://nz.skyflux.com/IMG_2416.JPG

This is after watching it grow out from the cuticle for 2 weeks.

What kind if biopsy will I get? (punch biopsy?) and where exactly is the best place for them to take it? What kind of accuracy should I expect from the biopsy?

I am scared and trying to get a diagnosis asap because I have had other rare health problems over the past year that a heap of blood tests was unable to figure out other than probable psoriasis and food allergies. I was 99% back to normal curing myself through a healthy diet, but now this!!! As you can see my thumb nails used to grow out split back when my skin was leaking lymphocytes and falling off all over my body. All my other finger and toe nails are growing out perfect now except this one.

Thank You

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BrianP's picture
Replies 3
Last reply 9/21/2014 - 7:05pm
Replies by: RJoeyB, BrianP, Brent Morris

I saw this trial mentioned on another forum.  Don't have any details other than the clinical trials website.  Phase I is for many different types of cancer including melanoma.  Phase II is only going to be for NSCLC.  I think it sounds like a very interesting concept.

Here's the clinical trials website link:

http://clinicaltrials.gov/show/NCT02178722

Here's a little information on what IDO is all about:

https://www.sitcancer.org/meetings/am09/presentations/fri/Munn.pdf

 

 

 

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FlakitoAJZ's picture
Replies 5
Last reply 9/21/2014 - 2:20pm
Replies by: Anonymous, Tim--MRF, FlakitoAJZ, malika

Hello everyone.

 

I have a 3 year old girl and last year (2013) around October this weird pimple appeared on her chest. It looked nothing serious, we assumed it would dissapear eventually. Except it didn't, it began to grow , particularly upward, against the skin surface in a pointy sort of way.

We made an appointment with our local Cancer league to have it removed and have a biopsy test made on it.

The thing is the biopsy results don't come until two weeks and the doctor that removed the tumor said that upon looking at it he thinks it's melanoma.

But really? Melanoma on a 3 year old? Do you know if a case like this has indeed happened somewhere? I thought that melanomas appeared at 13 years old or more, not as early as 3 years old. Actually 2 years old since it appeared last year.

Please share any info you can, my wife and me are extremely worried and need to know more about this. Thanks in advance for any info you can provide.

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kim007's picture
Replies 2
Last reply 9/21/2014 - 12:35am
Replies by: pipes, Brendan

My husband was diagnosed with Stage 3 melanoma 2 years ago.  He has tried several treatments such as IL-2, Anti-PD1, and Zelboraf. Now he has been on Yervoy for 6 months and is responding positively. We are so relieved to have had this positive break through.  We are considering expanding our family (we already have one daughter so we know it will be a lot of work) . The doctors indicated that because Yerovy is an immunotherapy, and the Zelboraf should be out of his system, his sperm and fertility should be okay to move forward. Of course, we are still nervous since these are new drugs and there hasn't been long-term research done on the side effects. Does anyone have any experience with this? What were your results?

I appreciate your feedback on your personal experiences.

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Kerrid74's picture
Replies 4
Last reply 9/20/2014 - 3:57pm

Good morning everyone.  I am 40 years old and mommy to 2 beautiful babies. Ages 3 and 5.  Last week I was diagnosed with invasive melanoma.  I have been researching non stop and to be honest I am overwhelmed, anxious and confused.  I have a wonderful support system around me, who are also doing plenty to research with me.  Yesterday I had my first appointment at Dana Farber melanoma center with the surgeon.  I was just diagnosed this past Wednesday with a deep biopsy.  So when I saw the surgeon yesterday, she explained my melanoma was .8mm, appeared thin with a mitotic rate of 0. No ulceration. Superficial spreading.  The surgeon said the next step will be next week to have general anesthesia with a wide excision and snb.  My question- is why not a pet scan or ct scan?  I am gung go for the surgery and I did ask her why not a pet scan or ct scan but she said the snb should be next and if that's positive,   Additional testing is next.  Does this sound like normal procedure? I was thinking of a 2nd opinion.  Though I did love the doc I met yesterday.  Thank you, and thought this is not where expected to meet new friends, I'm looking forward to it. 

Kerri

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This morning I  Repeatedly recxeived::

Not Found

The requested URL /melanomachat/htmlchat/123flashchat.html was not found on this server.

I'm me, not a statistic. Praying to not be one for years yet.

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AnitaLoree's picture
Replies 11
Last reply 9/20/2014 - 5:12am

Would really appreciate hearing your treatment experiences on pembro/Keytruda.  What should we watch out for?  Husband due to start infusions next week with Kaiser general oncology, NOT @ melanoma specialty ctr :-((.  Worried that he will not get: smart care, knowledgeable providers, prompt, appropriate care for side effects. Noted posting for "Askanurse@melanoma.com" and will contact plus thoroughly read complete pharmacological info.

Bcs husband's mel cervical spine (C1-3) location so rare have not posted in long time but have monitored your posts which have been so very informative and helpful refs. 

Hx: Resection surgery, partial, 10/28/13. Husband has unk origin vs primary extra medullary intradural mass anterior to cord @ mid C2 (13x7x4mm) with contiguous mass in the ventral cord @ mid C2, con't unchanged from MRIs post focus beam radiation 02/14. Unk if tumor grew after surgery bcs pre radiation MRI not done.  PETs neg for addt'l tumor sites (he is SO lucky).  Since tumor has been stable, plus they don't know what to do, Kaiser counsels "Wait & See" (!!! like for what?).  Got ref to UCSF mel ctr and could enter ipi/pembro/IL-2 trial.  Worried about ipi as so many have posted that ipi enlarged tumors before shrinking/disappearing.  No room for enlargement here and any more damage would be permanent.  Already permanent tingling numbness hands, feet, no temperature sensitivity left side.

With the early FDA apprv'l Pembro, Kaiser can give & will per our request. It will not be necessary to survive ipi 1st.  Would like to go to UCSF for mel mgt but don't have open period to change plans until end of yr.  Too long a wait.

Have him taking turmeric (curcumin+piperine)/Jarrow formula - @ Whole Foods;  3x/d glass Japanese green tea, Sencha/Macha highest in EGCGs, available Costco; no inflammatory foods, hi glycemic index foods; mostly alkaline foods, kale smoothie every day, Vit D3 1000 IU daily; safe fish (use Monterey Bay Aquarium guide app); organic fresh, raw, veggies, sprouted grains, no processed stuff.  Really not huge difference from previous eating pattern.  Just have dropped the wine, beer, desserts, muffns and some of the grains that are more acidic.  Did this help keep his tumor in check???  Feel good about being able to do something that has quite a bit of good studies and data to support helpfulness of wholistic approach!

 

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