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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democat's picture
Replies 6
Last reply 3/10/2016 - 5:17pm
Replies by: Anonymous, dolphin5, kathycmc, thrashter

Hi everyone

 

I am stage 3a/3b (due to high mitotic index). I live in San Diego, and recently met with Kaiser's only melanoma oncologist (for 100,000+ patients), Dr. Gailani, who also runs Kaiser's biochemotherapy and IL-2 protocols  - they offer biochemo for stage IV melanoma and as adjuvant therapy for stage III. Unfortunately, Dr. Gailani left Kaiser suddenly this week for a medical leave that is expected to last several months, at least. It is too bad, because I had  complete confidence in him.

I was told by someone who works in the biochemo program that the program is closed to new patients while Dr. Gailani is gone.  Kaiser will be referring California patients who want biochemotherapy to USC or UCLA, but it's up to my local oncologist to make the referral, and she is hostile to my request.  She was "put ou" t when I asked to for a referral to Dr. Gailani, even though she has no particular expertise with melanoma, and gave me a lot of misinformation, and didn't even know about Kaiser's biochemo program.  She doesn't think I need a specialist.  (An example of her misinformation: she told me I didn't need scans because it doesn't matter whether a recurrence is caught early, because there would be nothing they could do - I would die within a year.  Dr. Gailani told me the opposite - that early detection of a recurrence is the most important thing, and that there would be plenty of options at that point.)

I would appreciate hearing from anyone else who is in this catch-22 at Kaiser because of Dr. Gailani's sudden departure. Also, has anyone had biochemo at either UCLA or USC? If so, what can you tell me about those programs?  Also, does anyone know whether adjuvant biochemo is offered in San Diego or Orange County?

 I'd love to hear from anyone who has done biochemo (interferon, IL-2 plus chemo drugs administered for 5 days in hospital three times, with 3 weeks off between each administration).

Finally, I need to change oncologists at Kaiser San Diego.  Any recommendations?

So, in summary, I'm looking for information re:

1. Dealing with Kaiser in Dr. Gailani's absence, getting Kaiser to give me an out-of-system referral

2. USC vs. UCLA for adjuvant biochemo, or is there somewhere in San Diego or Orange County?

3. experience with adjuvant biochemo

4. recommendations for a Kaiser oncologist in San Diego

Thank you!!

Roxanne

Roxanne

Stage IIIa/IIIb

since 1/2013

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mrsmarilyn's picture
Replies 4
Last reply 2/25/2013 - 1:34pm
Replies by: susanr, POW, jmmm, Carole K

HI - My brother has been fighting Mel for 11 years - and now has one large (over 2 cm) in brain, in between lateral ventricals, bleeding.  At Jax Mayo, they are advising WBR and then starting Zelboraf in a week.  Does anyone have experience with WBR followed by Zelboraf.  Has anyone had one in ventricals and how was treated?  We are debating of passing on WBR and going direct to Zelboraf- but Mayo feels WBR will stop bleeding and shrink enough to allow ventrical fluid to flow again - and then follow up with Zelboraf and targeted radiation in Pittsburgh.

 

Any thoughts or advice is deeply appreciated.  Thoughts and prayers to all!  (He is BRAF K has responded well to zelboraf before)

Thank you,

Mrs Marilyn

Sister of Gary (Stage iv)

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HI - My brother has been fighting Mel for 11 years - and now has one large (over 2 cm) in brain, in between lateral ventricals, bleeding.  At Jax Mayo, they are advising WBR and then starting Zelboraf in a week.  Does anyone have experience with WBR followed by Zelboraf.  Has anyone had one in ventricals and how was treated?  We are debating of passing on WBR and going direct to Zelboraf- but Mayo feels WBR will stop bleeding and shrink enough to allow ventrical fluid to flow again - and then follow up with Zelboraf and targeted radiation in Pittsburgh.

 

Any thoughts or advice is deeply appreciated.  Thoughts and prayers to all!  (He is BRAF K has responded well to zelboraf before)

Thank you,

Mrs Marilyn

Sister of Gary (Stage iv)

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HI - My brother has been fighting Mel for 11 years - and now has one large (over 2 cm) in brain, in between lateral ventricals, bleeding.  At Jax Mayo, they are advising WBR and then starting Zelboraf in a week.  Does anyone have experience with WBR followed by Zelboraf.  Has anyone had one in ventricals and how was treated?  We are debating of passing on WBR and going direct to Zelboraf- but Mayo feels WBR will stop bleeding and shrink enough to allow ventrical fluid to flow again - and then follow up with Zelboraf and targeted radiation in Pittsburgh.

 

Any thoughts or advice is deeply appreciated.  Thoughts and prayers to all!  (He is BRAF K has responded well to zelboraf before)

Thank you,

Mrs Marilyn

Sister of Gary (Stage iv)

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HI - My brother has been fighting Mel for 11 years - and now has one large (over 2 cm) in brain, in between lateral ventricals, bleeding.  At Jax Mayo, they are advising WBR and then starting Zelboraf in a week.  Does anyone have experience with WBR followed by Zelboraf.  Has anyone had one in ventricals and how was treated?  We are debating of passing on WBR and going direct to Zelboraf- but Mayo feels WBR will stop bleeding and shrink enough to allow ventrical fluid to flow again - and then follow up with Zelboraf and targeted radiation in Pittsburgh.

 

Any thoughts or advice is deeply appreciated.  Thoughts and prayers to all!  (He is BRAF K has responded well to zelboraf before)

Thank you,

Mrs Marilyn

Sister of Gary (Stage iv)

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These are my the updated pictures, after scraping off it and a better quality camera. The last GP who saw it said he think it's angioma but then gave me a date with a derm this monday. When I see the pictures of angioma or hemangioma, (this looks close to hemangioma) they look raised from the skin. Mine is not raised, I have been pressing it to see if it has any growth underneath, I did blind test by feeling and seeing if it is different from the surrounding skin. I can't find anything.

 

This is the follow up from the other thread, since that thread got lost.

 

It is blood red without any multiple colors, but after reading about some great suggestions and knowledge I gained here, I am pushing for the excision. I can't help over think and fear that this derm is also going to blow me off saying she doesn't have time. Most derm are busy with botox in Canada, where the money is. I hope this works out this time.

 

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JoshF's picture
Replies 4
Last reply 2/26/2013 - 7:17am

Had scans yesterday. Almost 2 years NED(May). Onc feels real comfortable with my situation. Never found primary and felt this was a dermal primary. At this point onc doesn't feel scans are necessary anymore. Thinks I'm in good place as chance of recurrence is below 10%. This obviously makes me happy but I still have reservations. We all know how tricky this cancer can be...keep wondering if its laying in wait to rear it's ugly head again. You see so many cases on this site where people are given all clear only to have their world rocked again. So though happy not necessarily overly confident. Any suggestions out there?

Let's work for better treatments....for a cure!!!!

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Hi all

Diagnosed late in 2012: Back tumor, Breslow 14mm, mitotic 12mm, Clark's IV, ulcerated. Tumor recurred in original excision site (before WLE) in about 4 weeks, at 7mm.

SNLB showed positive nodes under both arms (1 of 2, and 2 of 5). So doctors are giving me the option of having both full dissections, or not. Chance of morbidity is higher when two dissections are done, they say. At this point, I'm essentially IIIC, with a very active cancer. Is it worth it to have the dissections, and risk a lower quality of life (I'm generally a very active guy, and my work requires me to be), or just accept that it's probably systemic, and just watch and wait?

Thanks, 

John

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JerryfromFauq's picture
Replies 7
Last reply 2/25/2013 - 8:08am

Can anyone get in the chat room tonight?    I ws  in it talkiing to a young lady around 5 pm EST and it disappeared and I have been umable to get it back up sincd then,

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

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akkcak's picture
Replies 3
Last reply 2/23/2013 - 12:54am

I had a pet scan this morning. The technician asked me as we were walking in if i had any metal and i said no. It dawned on me after i left that i had forgotten about the underwire in my bra. Is this going to cause a problem?
I also had a mri of my brain last week that showed a 4 mm spot. This may be a stupid question, but how do they determine it is melanoma from just pictures(mri/pet)? Now the waiting game. Hoping it's just because i'm super smart and my brain is growing.
I'm currently in my 7th month of low dose interferon.

Thanks!
Amy

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neki's picture
Replies 8
Last reply 2/23/2013 - 12:40am

My dad just finished the high dose Interferon last week, and this is his first week of the low dose 3x a week. He's sleeping 20+ hours a day and starting this week is having a tough time finishing his sentences. Sometimes he's so out of it that it feels like he's disoriented/confused...but it may be that he's just asleep or sleepy. 

Is this the normal fatigue that I read about in the side effects that people talk about? Did anyone experience similar side effects?

Thanks for any information. This board has been very helpful in researching what to do as we move along in this process.

Thanks!!

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http://learn.genetics.utah.edu/ AND http://learn.genetics.utah.edu/content/tech/genetherapy/gtchallenges/ CHALLENGES IN GENE THERAPY Gene therapy is not a new field; it has been evolving for decades. Despite the best efforts of researchers around the world, however, gene therapy has seen only limited success. Why? The answer is that gene therapy poses one of the greatest technical challenges in modern medicine. It is very hard to introduce new genes into cells of the body. Let's look at some of the main technical issues in gene therapy. Gene delivery and activation Gene therapy will work only if we can deliver a normal gene to a large number of cells - say, several million - in a tissue. And they have to be the correct cells, in the correct tissue. Once the gene reaches its destination, it must be activated, or turned on to produce the protein encoded by the gene. Gene delivery and activation are the biggest obstacles facing gene therapy researchers. Tools of the Trade highlights some of the most common methods for addressing these challenges. Introducing changes into the germline Targeting a gene to the correct cells is crucial to the success of any gene therapy treatment. Just as important, though, is making sure that the gene is not incorporated into the wrong cells. Delivering a gene to the wrong tissue would be inefficient and could cause health problems for the patient. For example, improper targeting could incorporate the therapeutic gene into a patient's germline, or reproductive cells, which ultimately produce sperm and eggs. Should this happen, the patient would pass the introduced gene on to his or her offspring. The consequences would vary, depending on the type of gene introduced. Immune response Our immune systems are very good at fighting off intruders such as bacteria, viruses and Jesse Gelsinger other biological substances. Gene delivery vectors must be able to escape the body's natural surveillance systems. Failure to do so can cause serious illness or even death. The story of Jesse Gelsinger illustrates this challenge well. Gelsinger, who had a rare liver disorder, participated in a 1999 gene therapy trial at the University of Pennsylvania. He died of complications from an inflammatory response shortly after receiving a dose of experimental adenovirus vector. His death halted all gene therapy trials in the United States for a time, sparking a much-needed discussion on how best to regulate experimental trials and report health problems in volunteer patients. Disrupting important genes in target cells The best gene therapy David Vetter is the one that lasts. Ideally, we would want a gene that is introduced into a group of cells to remain there and continue working. For this to happen, the newly introduced gene must become a permanent part of each cell's genome, usually by integrating, or "stitching" itself, into the cell's existing DNA. But what happens if the gene stitches itself into an inappropriate location, disrupting another gene? This happened recently in a gene therapy trial to treat several children with X-linked Severe Combined Immune Deficiency (SCID). People with this disorder have virtually no immune protection against bacteria and viruses. To escape infections and illnesses, they must live in a completely germ-free environment. In the late 1990s, Ryes Evans researchers tested a gene therapy treatment that would restore the function of a crucial gene, gamma c, to cells of the immune system. This treatment appeared very successful, restoring immune function to most of the children who received it. But later, two of these children developed leukemia. Researchers found that the leukemia occurred because the newly transferred gamma c gene had stitched itself into the wrong place, interrupting the function of a gene that normally helps regulate the rate at which cells divide. As a result, the cells began to divide out of control, causing the blood cancer leukemia. Although doctors have treated the children successfully with chemotherapy, the fact that they developed leukemia during treatment raises another important safety-related issue that gene therapy researchers must address

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

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Erica A's picture
Replies 6
Last reply 2/24/2013 - 4:35pm
Replies by: Tina D, Anonymous, triciad, randallgford, JoshF, Hstevens0072

Rarely on, but since I am I wanted to continue my tradition of positng positive melanoma news.  My husband, Ken, is a stage 4 survivor and cancer free 8 years this June!!!  There is always hope and people do make it to the other side.  As always, feel free to contact me (wife Erica) for any reason. 

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Erica A's picture
Replies 1
Last reply 2/22/2013 - 5:05pm
Replies by: Gene_S

Rarely on, but since I am I wanted to continue my tradition of positng positive melanoma news.  My husband, Ken, is a stage 4 survivor and cancer free 8 years this June!!!  There is always hope and people do make it to the other side.  As always, feel free to contact me (wife Erica) for any reason. 

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dian in spokane's picture
Replies 7
Last reply 2/22/2013 - 5:04pm

So I finally have an appt with Seattle Cancer Care Alliance. I'll be seeing Dr. Thompson on Wednesday. It works out well since bob and I were planning on driving over on Thursday, so we'll be able to combine this trip instead of having to make two.

Because of my previous experience with second opinions, I expect them to agree with my own doctor. BUT, they do have several trials. One way or the other, I'll be able to pick his brain a little and decide what my main plan will be, and what my back up plan will be.

Got my hair all cut off too, so I'm all ..ready for the fight.

 

DIan

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