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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lhaley's picture
Replies 5
Last reply 7/25/2011 - 9:08am

Great news today!!  The lump that stopped the radiation and caused me much alarm since it was just 4 weeks after surgery was just fatty tissue!  There were actually 3 nodules so I was quite concerned. Just to show that lumps do not always = bad news!!!  That now makes me 6 weeks NED!

I start back with my radiation tomorrow and have some issues.  After just 4 days I had been blistering along the scar area on my arm. I'm doing radiation because the tumor was along the ulnar nerve and the surgeon was not able to get a margin on that side.  When I had my original consult in Charlotte they told me that side effects would be minimal. A low dosage would be used to not damage the nerve. Most I should experience was a sunburn in the area. I am being treated locally and the Doctors originally all talked. 

I know that the local tech at least lied to me. They put on a bolus and when I asked what it was I was told that it was to protect the skin.  I had dinner the other night with Debbie from Va (she was in the area for a music camp smiley). When I told her about the blisters she asked me about the bolus. I had no idea!!  When I looked it up on the internet I realized that it is used to give the surface skin the same effect as the deep tissue. The info I got basically guaranteed blistering! I'm worried because I am allergic to most antibiotics including topical ones. Infection always puts me at a high risk because of my intense allergies. 

When I spoke to my Oncologist today he could not advise. They told me to ask lots of questions tomorrow and to voice my concerns. They are starting back so quickly that I don't have time to call the radiologist that I originally consulted with. I will call him in the morning but doubt I will get a callback before I go. I realize that changes can be made for the next day.

I know this was long and I apologize. My question for others who have had radiation on a scar line. Did they use a bolus (looks like a gel pack), should it be sterilized between patients, and what side effects did you get from it? I have 20 more treatments to go.

I'm happy with my news I got today but am concerned about radiation issues,

Linda

Stage IV since 06  NED for 6 weeks!

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Lisa13's picture
Replies 9
Last reply 7/25/2011 - 7:14am

I'm 2 days away from knowing how the dacarbazine is managing the small nodules in my lungs.  I was doing quite well until this morning, and then was plagued with major anxiety. Chest tightness, hard to breathe - you know, symptoms that might make you think bad things, but yesterday I had none of these symptoms. I'm very irritable and it's hard for me to focus and my heart is racing. This is my first post scan after first line treatment, so I've never felt this type of fear before. I keep trying to tell myself that the melanoma has been growing slowly from April to June, so it's either continuing to grow slow, is stable or is starting to disappear.   Can you guess which one I pray for????  I wasn't going to come on here until I knew my results, but my anxiety is getting the best of me.

I've also been thinking alot about these spots - most under 6mm, all of which havn't been biopsied to confirm melanoma. Even though most "tiny nodules" appear a bit bigger since the last scan in April, for all I know, a few of these may not have been melanoma (or at least this is what I tell myself).  As much as I want to know on Tuesday, I'm scared to know and I doubt this journey gets any easier.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Gene_S's picture
Replies 7
Last reply 7/24/2011 - 10:46pm
Replies by: nicoli, Gene_S, bcl, DonW, washoegal, Anonymous

Hi, It seems (to me) every time someone posts a question about

alternative treatments there is usually a suggestion to go to the

"Quackwatch" web site. Here is a link about the creditability of

Quackwatch that may be of interest to readers especially those

who are interested in using unconventional treatments.  See:

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

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Anonymous's picture
Anonymous
Replies 10
Last reply 7/24/2011 - 9:52pm
Replies by: Gene_S, Anonymous, dian in spokane, teach, lhaley

Hi

My doctor is willing to have a Vitamin D test done so that I will know if I am  Vit D deficient.

My blood tests are done at Quest because the blood tests are cheaper.

Can someone tell be the name of the blood test for testing Vitamin D . Quest had 3 test:

1.Vitamin D 25 test

2. Vitamin D125 test

3. VitaminD. 25 & 125  combotest

 

Any info you can give me about  the Vitamin D test, you have had would be very helpful.

 

Thanks,

william

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MariaH's picture
Replies 12
Last reply 7/24/2011 - 9:47pm

Dave and I have been in contact with NIH regarding their clinical trial with TIL, chemo, irradiation, and IL-2.  They are asking that once we get the results of Dave's pretesting for IL-2 at Roswell, we forward them to them.  They said they can remove part of Dave's tumor prior to doing IL-2 treatment at Roswell and start growing the TIL cells if IL-2 fails.  Since the IL-2 protocol takes up to 8 weeks, this to me sounded like a good back up plan.  However, now I am wondering - should Dave do the IL-2 first and wait to see if it works or should he look into going to NIH and start his treatment there (IF he is accepted by them)?

I guess having options is better than having none, but it really is so difficult to decide.  Any thoughts/opinions would be greatly appreciated.

 

Maria & Dave

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llw75751's picture
Replies 2
Last reply 7/24/2011 - 8:12pm
Replies by: llw75751, RMcLegal

I am new to this board , have been following for some time now, but first time to post.I am in houston hotel awaiting my 3rd visit to MD Anderson, I had originally came here to start IPI Friday, but scan results thursday shows brain met, which is reason for gamma knife tomorrow. I was kinda of shocked by the news so did not ask alot of questions that i should have and i know you guys are full of great information.

So first question is for anyone who has had gamma knife procedure, exactly what is this? procedure? down time?etc.

and the scarey question Bio Chem how bad is it really? I know every person is different but there are those symptoms that you can pretty much expect what are they???   please help!!!!!!!!!!!!!!

Thank you in advance, I have not put anything on profile yet, but will. I am actually in lobby of hotel so limited on time. I will check back later and thanks again.

Laura

I cant take a step LORD without you holding my hand

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Replies by: NYKaren, Vermont_Donna

Hi everyone:

As most of you have read, I'm due for my last dose of Ipi on Thursday.  My stomach side effects are being managed well, but this rash/itch is pretty bad.  I know other side effects from other treatments make a rash seem like child's play, but it's bad, and last time I met with Dr. Halpern (dermatologist who co-heads Melanoma program at Sloan) he prescribed Doxepin, 25mg.  Aparently it's an old antidepressant, wich he said they use a lot on severe rashes with good results.  I already take 1 Zyrtec daily plus a short-acting antihist. every 4-6 hours.  Plus steroid creme, menthol creme, powder after sweating, etc.  

The instructions are "1 at bedtime, after tolerated and still pruritic after 5 days, add morining dose, then after 5 more days, may introduce 3rd daily dose."

I just started adding the morning dose.

So, I was just wondering if anyone here has had any experience with the drug.  It certainly makes me sleepy, so I'm curious if I can stay awake today after just starting the morning dose!

The only visible change in the mel is that there is some white running through it, but nothing has flaked off as Dr. Wolchuk hopes--he did say that the Ipi could work, but I would still have the pigment, but he does hope, as do i, that it will flake off.  I also notice that some small spots have increased slightly running from the mel (on my temple) towards my eye.  It figures that I won't see Dr. W. for my last infusion (I guess he'll be away) as I always have, but I will try taking a picture of it Monday and emailing it to him.  I'm so anxious about whether this will work or not, possibly "advancing" to stage IV, etc.  I guess we all experience that with any treatment, but it's still so scary.

Hope everybody's keeping cool,

Karen

Don't Stop Believing

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brownidgirl1's picture
Replies 4
Last reply 7/24/2011 - 1:32pm

Hello, I just signed up on this site today because I am having a slight complication from surgery to remove 2 lymph nodes from my left groin. I have read the stories shared on this site and my prayers go out to each and every one of you!! I have questions but am having difficulty getting answers or results from my doctor and wanted to see if anyone here had any simiar experiences or advice.

After the removal of the lymph nodes I did not have any drains put in. I have had to go to the surgeon twice now to have him drain the site with a syringe. The site keeps swelling and filling with fluid and there is nowhere for the fluid to go. On my last visit I believe he used a lightly larger needle to drain the fluid so it is draining itself a little at a time but it is still swollen. My fear is that I will end up with an infection or that I will end up in the doctor's office every few days to continue to have this drained.

Does anyone have any advice or suggestions? I would appreciate it greatly!! Again, my prayers go out to everyone who is facing this battle!

Thank you,

Kelly

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MikeWI's picture
Replies 8
Last reply 7/24/2011 - 12:04am

I am new to this site, having been diagnosed with melanoma on 5/25.  On my lower right leg, I always had a mole.  Being of irish descent and fair skined that was common.  Around November of last year this mole flaked off like dead skin.  Shortly afterwards it was replaced by a scab and that scab started to grow in size. 

I went to my doctor in May of this year and had the mole removed.  They examed it, and found it to contain melanoma. 

Shortly after that is a daze of tests I had a CT/PET scan, sentinel lobe surgery and a surgery on my leg for a deeper incision.

The PET scan showed the cancer had not yet Metastized, my lymph node was clean of cancer, and so was the tissue sample from the deeper incision.  Due to the size of the tumor(7mm thick) I am considered stage 2.

My next step may be a interferon treatment.  I have faith in my Doctors at the University of Wisconsin Hospital

I have read everything on this web site including the following quote "You have been given a Diagnosis not a Death sentenace"  Does anyone know any other strategies for dealing with this disease?

 

Thanks,

Mike 

Search and Destroy

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triciad's picture
Replies 15
Last reply 7/23/2011 - 8:37pm

Hi Everyone,

It's me again.  I just had surgery to remove an intransit from by buttock area.  This puts me now at 3C.  My oncologist wants me to do a little radiation to that area.  He says it's painless and hopefully will kill any cells left behind...on my behind...ha ha.  He also said it would not exclude me from any treatments in the future. 

I have an appointment next Wednesday with the radiologist, but I was hoping some of you could share some advice or experiences with localized radiation.  How many zap sessions are usually involved?

Thanks for all of your help!

Tricia

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djpayn's picture
Replies 18
Last reply 7/23/2011 - 5:03pm

Hello Everyone.

 i am going to start with a short history - me:stage 3c, tumor in right ankle, melanoma in knee and groin nodes - all removed in july of 2008. did INF and radation, been NED ever since. I had a PET scan in april that showed activity in my right foot, my ONC wasnt overly worried and agreed to rescan in 3 months. Since then my PC dr. has been doing monthly blood work due to my sever vitamin D deficiency. IN june my WBC was 8.6. My july WBC is 10.8.

My PC is worried about mel returning as she cant find any other reason for my elevated WBC (no signs of infection, illness, etc..) She ran through a list of symptoms and the only one i have is severe night sweats, which i have told both my ONC and PC that had been increasing. My July PET got moved to sept also.

 

I called my ONC today and am waiting for a return call because now i am much more worried. As far as my foot and ankle goes, i have not noticed anything from a visual standpoint that would indidcate a reocurrance.

I checked back through all my records to check my WBC. At the height of my cancer (weeks before the tumor came out) my WBC was only 9.7 - when i had a severe infection months later my WBC was 11.4, and during radation my WBC was 3.6        Again, i have no symptoms that indicate infection, allergies, etc.

 

Does anyone know enough about WBC's to be able to explain this to me a little better? I am going to request my ONC do labs soon also as well as try to get my PET sooner. But, should i ask for any other tests, like a CT or MRi instead (or in addition to)?

My last ONC appt. went well with alot of reassurances that i was doing great and that PET's often give many false positives, etc... yet i know that before i was diasgnosed, i was healthy as a horse but had night sweats. Now that these symptoms seem to be returning, i am getting very scared again.

Thanks for reading and for any advice you have. I am going to annoy my doc's until i get seen - im just hoping i can get a few opinions here to help ease my mind (or set me straight). thanks again.

dawna (djpayn)

 

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bs010kbb's picture
Replies 2
Last reply 7/23/2011 - 4:46pm
Replies by: Carver, gabsound

I recall reading about someone that had a groin dissection in her right groin followed by an area in the thigh that tested positive. I have been trying to recreate where I found this but have not been successful - I have also tried narrowing the search fields but just can't recreate where I found her posting. Can anyone help? I would love to chat to find out more about her thigh. If I remember correctly, this fellow survivor did Interferon and has NED now for 9 years. Appreciate your help - thank you.

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Patients with metastatic melanoma have a poor prognosis with a 5 year survival rate of about 5%1. There are two FDA approved treatments for these patients.

Dacarbazine has an objective  response rate of approximately 12% with 2-3 % complete responses that are often transient2.

Interleukin-2 (IL-2) has an objective response rate of approximately 15% with 4-5% durable complete responses3.

Results of two new experimental agents have recently been reported for the treatment of patients with this disease.

Ipilimumab, an antibody against the inhibitory lymphocyte receptor, CTLA4, mediated a 3.6 month improvement in median survival with an objective response rate of 7% in 540 patients but only three patients (0.6%) achieved a complete regression4.

 PLX4032, an inhibitor of mutated BRAF, had an objective response rate of 77% in 48 patients with 3 (6%) complete regressions5.

The very small number of durable complete responses make it unlikely that many patients with metastatic melanoma will be cured utilizing any of these approaches.

This is why we must try combinatorial Therapy  with or without vaccines or Adoptive cell therapy (TIL) with Dr. Rosenberg.

 

IMPACT OF PRIOR TREATMENT ON RESPONSE TO CELL TRANSFER THERAPY USING SELECTED TIL

 

  Source: Durable Complete Responses in Heavily Pretreted Patients with Metastatic Melanoma Using T Cell Transfer Immunotherapy

Cancer Res Published OnlineFirst April 15, 2011.

Steven A. Rosenberg, James C. Yang, Richard M. Sherry, et al.

=========================================================================

Based on 2005 data... Rosenberg has improved the protocol since then.

 

I thought you might like to know

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DeniseK's picture
Replies 5
Last reply 7/22/2011 - 6:52pm

Hi All,

I hope everyone is doing good today!  It's so nice outside!  I just got back from San Francisco at the Melanoma Center.  I had an awesome day, we walked down to Haight street, walked on the beach at the Presidio, drove across the Golden Gate Bridge, and of course saw the specialists.  They're recommending either 1 year Interferon or 5 years PEG Interferon.  With an ulcerated tumor both these treatments have shown a better OS rate and decreased recurrence rates.  It has something to do with the ulcerated characteristics.  Anyway I'm going to do the 1 year Interferon.  The 5 year PEG is still toxic and I just can't imagine being sick with side effects for 5 years.  Dr. Spitler said that in the PEG study NOONE made it to the 5 year mark so it's really an unrealistic treatment.

She is also recommending that I get full blood work done, CBC, LDH, chemistry? & Vitamin D levels checked.  This was interesting because I read somewhere that Vitamin D which we get from the sun is usually low in patients diagnosed with Melanoma.  Vitamin D helps our bodies fight cancer so it's important to keep up our levels. 

I'm going to be referred to a local oncologist next week to discuss treatments and tests.  I'm hoping to start treatments August 1st.  I know the Interferon controversy but with the specialist recommending it and from what I've researched I feel like this is the best treatment for me. 

Oh Yeah!  We met this couple there, Richard and I can't remember his wifes name but she is blonde and pretty.  I was hoping to talk more to them.  I don't know if he's on this site or not but his Melanoma was on his ear, he did 1 year interferon then he recurred and now has it on his liver and spine.  I was hoping to talk to them more but we didn't see them again.  If anyone knows them please let me know. 

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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renakimu's picture
Replies 5
Last reply 7/22/2011 - 5:25pm

today we found out tha the nodules were there from the first ct scan and they are exactly the same as before.none can say that they are melanoma or not.is it posible with just a microscopic met at tha sln and without othel lumpnode positivi at the full axillary disection to have a met at lungs?the lung specialist told us that those could be there for years and to be asymptomatic for ever, they just need observation from time to time.the thing  that worrys me is that they are ground glass.....so much anxiety evere time with scans....its horrrible..

cant wat for answers!you are helping me so much!

blessings to everyone

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