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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Mfarkas's picture
Replies 3
Last reply 12/4/2010 - 8:43pm
Replies by: nicoli, MichaelFL, Lori C

Hi!  I was diagnosed stage 2c in June 2008, since then have completed one year interferon and had my second baby.  I really have no complaints.  Just went to the oncologist for my 2.5 year check up, had a clean chest x-ray and he told me my labs were great and that I would see him in April or May, "When the snow melts"  I live in Wisconsin!!

So - my question is my LDH levels have been changing.  They were in the 150's all through out treatment, then this past June it was 379 and this past week it was 514.  The normal range goes to 618, somewhere around there.  Do I need to be worried?  Do I trust that he is not concerned and would like to wait until spring to do a scan due to my age - 31.  I would like to continue to move on with my life and watch my two little girls grow and have a happy life along with them - but this has caused me some concern.

Any ideas?  Is there a way I can lower the lab value?  Is it really indicitive of anything other than a "non-specific tumor marker"??

Thanks!

Michele

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Rocklove's picture
Replies 8
Last reply 12/5/2010 - 2:28pm

Wishing I had some good news to post. But thought I was walking into Moffit Wednesday to start the PD-1 trial. Got there... Oh no.. you need to see the doctor before we can start.

Doctor walks in, bad news.........we can't put you on the PD-1 with Vaccine trial because your HLA is A*03. I took it in stride after picking my feelings off the floor. OK Doc what do we do. He said compassionate IPI is our choice. He would rather do the Adoptive Cell Therapy but it takes at least 6 weeks and the way the tumors were growing (they have tripled in numbers in the liver) he did not want to waste the time and he would rather get me started on the IPI. The IPI should start within 2 weeks.

I went along with his recommendation .... (please keep in mind I was in shock and not responsible for my actions after news like that.)

(For those that don't know my history with Stage IV diagnosed last Dec is Docetaxol-YM-155 for 2 rounds (6 weeks) then failed, 6 rounds of Bio Chemo and 2 months of maintenance (IL2) then failed. No need to go into the stage 3 surgeries and limb infusions procedures in the groin and leg and radiation for the 2 years prior starting Dec 2007 @ Moffit in Tampa).

After a day of being kicked to the curb an MPIP friend said "we have a lot of work to do. We need to find out why... they told you 1 month ago you were HLA 2a positive........why now A*03 what happened?"

She said "Call the PD-1 Trial administrator and find out if you have to be HLA 2a positive to be in the trial and if it yes, ask for an exception."

She said

"Email the doctor and ask why I would only get 3mg of IPI on the compassionate basis and most of the trials that went on were 10mg?"

" Ask him what is plan b? We need to have that plan in place no time to waste if IPI does not work."

"Ask him since IPI takes 3 months before you scan... can there something to find out the progress in the middle of the 3 month time slot?"

I did email him, not all questions answered but she got me to get him thinking harder I hope.

If any of you have any suggestions or questions to help out in my quest for the silver bullet, I would appreciate it.

I have personally met several people from the MPIP board and most have been extremely supportive. They will at least help extend my life.. and hopefully they help save it.

By the way, I'm back in the game in fighting mode again.

Rocky (Stage IV Liver Mets)

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djpayn's picture
Replies 4
Last reply 12/5/2010 - 9:07pm

Hi all.

For about 4 weeks now, i have been plagued by severe nausea and an upset stomach. i saw my onc who ordered a abdomen scan, that came back with negative results for any tumors, cysts, ulcers, etc...

during the past 2 weeks, i have lost over 15lbs.... i have no appetite and just the smell of food makes me nauseas. i am managing a pb&j or grilled cheese every couple of days, but not much else.

my doc wants to send me to a GI doc for a scope....

i will probably have this done soon, but wanted to see if anyone has had any similar experiences -

im not currently on any meds that would alter my eating habits and the progression on the stomach problems is increasing. i have considered this could be a stomach bug, but OTC medicines like pepto do not help either.

thanks for any input....

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/4/2010 - 2:14pm
Replies by: Charlie S, Jamietk

Hello.

I have recently been approved for MediCare but I do not understand what MediCare is.

I was told that I am now recieving MediCare benefits as well as the MediCaid benefts I was previously on.

What is the difference in the two?

Any help or personal experinces will help.

Thank You.

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glewis923's picture
Replies 7
Last reply 12/3/2010 - 8:31pm

Hey ALL-  Got 6wk. CT scan and all my lung nodules (nice word for TUMORS!!!) have NOT increased in size. ie: they are relatively stable compared to last scan where they had tripled in size.  I hesitate to "crow" too loud about any shreads of semi-good news, but I'm so grateful that, at least temporarily, my lung tumor growth has "stabilized" and there has been no further spread to other organs as of yet.  FYI:  I'm on Taxol/Carboplatin/Avistan.   I think of ALL of you quite often although I don't always "share" that much......I pray for ALL- especially those younger than I (48).   Just thought I'd finally post something semi-positive about myself; instead of lousy advice or tiring questions.

 

Love to ALL-  Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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Hi everyone,

I feel great so far. Had my first IPI infusion yesterday. I saw my oncology surgeon before seeing my melanoma oncologist because of the two open wounds and a possible infection.I pointed out my 5 new melanomas nodules. He agreed that they were melanoma, as they look like how mine usually present. He brought up the drastic option of an above the knee leg amputation. There is no known melanoma anywhere else in my body. We could get rid of the melanoma and the unhealed wounds in my leg by amputating. I told him, as I bawled, that I wasnt afraid of having my leg amputated and having to have a prosthesis. I am afraid of doing that AND melanoma rears its ugly head again, further up on my thigh, or elsewhere in my body (an organ, etc). OR I worry about my "stump" not healing, just like the two wider excisions have not healed. He said he heard what I was saying and agreed there were no guarantees on either concern. He just wanted to bring it up as an option that I SHOULD think about and consider. Oh and I had another celluilitis infection, which I had suspected and was the reason for my visit. I cried so much during the visit but finally pulled myself together as I had my oncology visit and then my IPI treatment. I managed to get, with my mom's support from 4L to 3K ,but felt like I couldnt get enough air. I knew I was on the verge of a panic attack. I made it to the oncology office and I knew my surgeon was calling my oncologist. As soon as he saw me as he was walking by he said "I'll get you into a room as soon as possble".The nurse came out right away and took me and my mom to a room. He came in right away and was GREAT! I said I was afraid I couldnt do the IPI because of the leg infection...he said dont worry, this is what we are going to do....we are going to call your leg issues a chronic indolent infectious process and put you on augmentin twice a day for two weeks then once a day for months. Then we can get you into the trial. I told him I needed som ativan as I was getting panicky and couldnt breathe well. He knew I was upset and he said as soon as we get you into the clinic rooms for IPI I will get you some ativan. That helped me calm down. He then spent the next 45 mintues talking to me and my mom about where leg amputation fit in as far as my clinical case of melanoma. He said he wanted to give IPI a chance and then try IL-2 and/or other chemos before we made that decision. He has had some patients who opted for amputation of their leg. He understood how bad I felt and how scared I am. He did his physical exam, agreed with all the nodules I found being melanoma and he found a spot behind my leg that I hadnt seen. We then went to the clinic rooms and the first thing they did was give me IV Ativan, then an augmentin pill to get started and then eventually the IPI arrived and that part went really well. The staff was great, everyone was perfect and so caring. I slept and dozed and mom said I asked the same questions twice a couple of times. Haha, that darn ativan. I got a prescription for lorazepam as I know there are just some days I need it. I know some people here have opted for leg amputation....can you write to me and please tell me more about your specific situations??

Thanks so much for reading all of this (if you indeed made it this far!)

Vermont_Donna

stage 3a

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Jaime.30's picture
Replies 15
Last reply 12/8/2010 - 5:33am

I am newer to the board but have shared our story with a few of you so I thought I would post a little update. I am the caregiver to my husband  and in September he had a Craniotomy to remove 3 small clustered lesions which turned out NOT to be Melanoma but inflammation and he recently had MRi's done of his brain and spine again and still nothing there so they have determined that it was more than likely caused by the radiation that he had after the primary was first excised.  It was on his ear and the inflammation was on the same side just above the ear in the brain.  So he was declared NED and still at stage III and not stage IV yet.  At his next appointment his doctor felt something in his neck dissection scar that he feels is suspicious so off for a CT scan....still waiting on those results but  he has had needle biopsies done in this area before and all has come out just fine.  We decided when the doctor was concerned that after so many false alarms and so many late nights talking about the what ifs of it all that this time would be different..we were not going to worry or discuss what could happen if it turns out to be melanoma this time around.  I always worry...my nature is a nurturer and a worrier but my husband is a very calm and one day at a time kind of guy and last night he says to me..." So what are we going to do if this is a tumor?"  In all honesty I wanted to scream and throw a fit...and say I can not handle going there right  now...that I have a horrible feeling that this stupid cancer is going to take you away from me and away from our dreams that we are still planning ...but I didn't I was a good wife and I told him we will handle it together and we would find the best damn plan we could find to get rid of it.  It is so hard to not know.  He is finally feeling better and getting ready to go back to work.  He was very weak on the left after the surgery but is doing much better and the lingering Interferon side effects have finally made their exit for the most part...If Melanoma does come back...ok...off to battle we will go...but I just want him to have some time to feel good...to be able to do the things he wants without being sick from treatments.  I wish so badly I could just take this from him...I feel so totally helpless a lot of the time.  I guess I ended up venting a little more than updating....sorry. :o)  I guess the only question is does it ever get better...does the thought of a reccurrance ever stop sending families into complete and utter melt down emotionally??  I have met several women who have lost their husbands to this beast and they have done so with Grace and strength and I just hope and pray I can keep being strong for my husband the way they have.  I do really well on the outside but inside sometimes...not so much!

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redbaron0511's picture
Replies 3
Last reply 12/2/2010 - 12:55am

I have recently been diagnosed with metastatic melanoma,  May of 2010, and was wondering if anybody has any information on the use of LDN ( low dose naltrexone)? I've been doing some research on this interesting drug, which was FDA approved in the 80's for use in treating drug and alcohol addiction, at the 50mg dosage. There are a few dr's that are working with the dosage of 1mg-4.5mg, and are having pretty good results. I went to my oncologist with some info on LDN, but he acted like I never even brought the subject up. I can understand his reluctance as LDN is considered to be an off brand treatment.

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jolainajo's picture
Replies 2
Last reply 12/1/2010 - 12:39pm

Hi everyone,,,, I started my Ipi on Oct 29th, had my 2nd infusion  Nov 19th, I am feeling extremely tired, and it seems that one of my tumors on my leg, posterior, is getting huge, hurting, and it feels like a sunburn, not to mention, I had brain mets before I started Ipi and had gamma knife done, but I see this circle rainbow and it flashes and it comes and goes when I get hot, or exert myself too much. I have gained weight, and feel miserable. I need to know if all of this is normal. I am scared that the melanoma is just getting worse, especially since I feel this tumor constantly. I have other tumors that are subq too, but they dont seem to be feeling or getting large like the one on my leg. I need to know if any of you have had similar reactions, and possibly, need to know when you noticed reduction in size of the tumors if it is working, how far along in the treatment you noticed reduction. PLEASE respond, I need some answers. Thanks............... Jolaina

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swissie's picture
Replies 3
Last reply 12/3/2010 - 3:43am

I haven't really posted on this new forum, but now I need some help.

I was diagnosed with melanoma in September 2008 (1.4 mm), with a "negative" SNB. I found a macrometatastase in June 2009. Of the 12 nodes, 3 had cancer, one of which was outside of the node.

In September 2009 I started a double blind trial with ipilimumab (10 mg/kg), after my 4th infusion I had a colitis and knew I am in the ipi arm of the trial.
I had my 8th round of ipi two weeks ago!

Since I started I had headaches, itching, a funny Beau's line on my toe nales, a colitis (after 4th infusion; min grade 3), a rash  (a week BEFORE my 8th! infusion; min grade 3).
My doctor does not believe the rash was ipi related, but for me it looks exactly the same as some examples I saw in recent articles on CTLA-4 side effects.
Also I have a Barret Espohagus, which again is a coincidence according to my doctor (although I never experienced heartburn of reflux before my trial, and although anti-reflux medication doesn't seem to work).

At the moment, my biggest problem is exhaustion.

My first question is if there are others like me out there who had 8 rounds of ipi or more? How are you feeling? Any new side effects?

My second question is if I should quit the trial. It seems to be taking it's toll. Being exhausted all the time sucks big time. I was very tired from the beginning, but it's getting worse every round.
The extreme rash was only a week before my 8th infusion, so I seem to have late responses.

Any smart ideas?

Thanks,
Sabine
 

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James from Sydney's picture
Replies 9
Last reply 2/7/2014 - 12:29pm

For those of you with non Visceral Melanoma,  Provectus has started Compassionate Use of PV 10 here in Australia, it will be also available in the US soon. The previous Trials had success on a limited use basis which meant you could only have a number of injections on a certain amount of tumors only. This Compassionate use will be a lot more flexible. All the data from this will help set up the Protocol for Phase 3 Trals. I found this email for enquiries,  culpepper@pvct.com

best wishes

James

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Anonymous's picture
Anonymous
Replies 4
Last reply 12/2/2010 - 1:45am
Replies by: LynnLuc, Anonymous, Rocklove, King

Anyone on the NCI Moffitt  Florida mdx-1106 trials??? Would appreciate any feedback. thanks chris

 

"Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy.

http://www.clinicaltrials.gov/ct2/show/NCT01176461?term=mdx-1106
http://www.clinicaltrials.gov/ct2/show/NCT01176474?term=mdx-1106

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claudia-uk's picture
Replies 1
Last reply 11/30/2010 - 8:58pm
Replies by: Linda/Kentucky

 

My husband got his test results back today. He has mucosal melanoma (sinus) with metastases in lungs and liver. He is negative for braf and c-kit. The doctor now suggests ABI-007 trial: Abraxane versus Dacarbazine. I can't really find any information besides the trial information. Is anyone on that trial? It doesn't sound very promising. I don't understand why I never read in forums about it. Please if, anyone is on that trial or knows more about it,. let me know!

http://clinicaltrials.gov/ct2/show/NCT00864253

 

Thanks

Claudia

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Sherron's picture
Replies 41
Last reply 12/4/2010 - 9:57am

He was the most wonderful loving man, Christian, father, husband, best friend, and soul mate a wife could ever want or wish for.  December 4th would have our been our 43rd anniversary. We went to Hospice yesterday afternoon...and by 1:10 am.  the angels took him to heaven, no more pain for him.  Something (God) woke me up 10 minutes before he passed.  What a blessing.  I will miss him so much, my heart is broken...but he is pain free, and Melanoma has him no more!! 

Take Care,

Sherron, wife to Jim FOREVER!

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davekarrie's picture
Replies 13
Last reply 12/2/2010 - 2:21am

I posted yesterday that they thought my lymph nodes were negative, but found out yesterday that they found melanoma cells in 1 lymph node on my right side, now they must go in and remove many more. Now I have to go back to mayo for more surgery, then what?  Just a rollercoaster ride that is tough, not to mention that we found out we are expecting and we are trying to buy/sell a house, what a crazy month it has been. I am young and healthy though so I know I will beat this.  Wanted to get advice for others with stage IIIa to see what treatments are available and/or useful. have read many things about inferon and the like.  Also, should they put me through  a PET scan and check LDH levels as I haven't had those yet. thanks for any input/advice.

Live life to the fullest and enjoy each day!

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