CSN Login
Members Online: 15

melanoma and leukine

mi4sons's picture
mi4sons
Posts: 1
Joined: Jul 2005

My 22 yr old son is treating his melanoma with leukine.Injections 14 days on 14 days off for 1yr. I've not been able to connect with anyone else out there who is doing this same therapy. His Dr. said this is a very new treatment. My sons' Dr. is consulting with the Mayo clinic. Mayo recommened this treatment. He is stage 3. The melanoma started on top of his head. It was also detected in 1 lymph node after sentinal node biopsy. He had a radical neck dissection with all of the 17 nodes removed being negative. All blood work and another PET scan have been good. The only reaction he has had from the injection has been swelling at the injection sites. This seems to be getting worse with each round of treatment. I would be interested in discussing this treatment with others who have done this or are doing this treatment and if they have had positive or negative results. Thanks, mi4sons

Carvs's picture
Carvs
Posts: 30
Joined: Jul 2005

This is a link to an active melanoma group and I know a number of members have done leukines (sometimes referred to as GM-CSF) http://www.mpip.org/bb/bbindex.html
Best of luck to you and your son.

musithang
Posts: 1
Joined: Sep 2006

I have stage 3a melanoma. Diagnosed in October, 2005. Located on my chest and spread to the lymphnodes in my armpit. Had a positive sentinel node (3) and removed 13 from my armpit (all negative).
I was put on alpha inteferon with disastarous side effects, etc. I have been doing the leukine treatments since July 2006 (14 days on, 14 dyas off) with the same results that your son is experiencing (swelling, getting worse each treatment, etc).
I was given this protocal by the Sylvester Cancer Center at the University of Miami.
I am 42 years old.

redlady0199
Posts: 1
Joined: Oct 2006

I am 35, diagnosed with my second melanoma, this time it was stage 4 tumor on my lung. Thank God my lymph nodes didnt appear to be enlarged. I had 3 lymph nodes removed the 1st time, 5years ago,and they were all good. I had the melanoma on my left arm for 5 years and was misdiagnosed. The 1st doctor to look at it thought it was a patch of exema and gave me a stearoid cream. It was pink in color and looked harmless. That is until it grew when i got pregnant with my 3rd child. It grew into a tumor on the outside of my arm and would bleed if anything touched it too long. Just have my arm folded would cause that. It still looked harmless even to the dermatologist. I finally had it removed after my son was born,only because everytime he laid his head on my arm, it would bleed. It became an annoyance. Wow, what a shocker to find it was melanoma.
I started leukine in June. Its pretty rough. Doing the injection in the legs became too painful and the swelling was awful. So I began doing it at night, before bed and only in the stomach, wow, what a difference. The spot is a little irritated and itchy, but I rub benadryl gel on it and its fine. I thought by doing it at bed time, by body had time to rest before stressing it more. Of course the aches are pretty bad for the 1st week of each treatment. I am experiencing weakness the legs right now. Dont like that too much. I am a fairly active person and this is making me very inactive.
I keep reminding myself only 7 left now. next month i can say only 6 left....... I am just giving my self a huge, vitamin c like shot........

me101805
Posts: 2
Joined: Nov 2006

I was also diagnosed with melanoma on my arm in 2005, after having a pink lump there for 9 months - something akin to a large solid blister. I had it surgically removed.2 of the sentinel lymph nodes tested positive - so stage 3. The following month the rest of the lymph nodes were removed and were clear.

As I am very sensitive to drugs, I felt that Interferon wasn't on option - and preferred the results I could see on the Leukine research. Since February 2006, I have been injecting myself with Leukine - it has affected my thyroid levels, making me very tired (until the thyroid medication was altered) increases fluid retention (and thus affects my blood pressure), however I have also seen moles on my body shrink and fade.

Like the others mentioned here I found that I was getting huge lumps from the injection sites - up to 7 inches across and stopping me from walking at times. I tried Benadryl, but it had no effect. However Claritin (for hives) works very successfully, and keeps the site reactions to a bearable small area. I gave up injecting in my stomach as that really didn't work for me. The site reactions were always much worse there.

I found that sitting still for 15 minutes or so after the injection was essential to coping with the pain that comes in my legs immediately after injecting, and also found that injecting at bed time works best for me.

I now only have 3.5 treatments to go, and have found that my body is tolerating them much easier than in the early days. I no longer get so tired or find my joints ache so much. I thought in August that I would never be able to complete the course, but now it looks possible.

jimacos
Posts: 1
Joined: Aug 2009

My wife was recently diagnosed with melanoma originating on top of her head. Surgery removed nodes at her ears and neck. Leukine treatment has been recommended. Did your son receive the injections for one full year? Was the treatment successful?

jimacos

hoguesinaz
Posts: 1
Joined: Sep 2009

My husband (28) has been doing the same Leukine treatment (14 days on / 14 days off) for one year plus. He has 3 more years of this treatment to go. But is heavily questioning it. At this point the drug has made him numb. Lacks joy in all he does. Has him beat down. He just had to take a month break from the drug. This is his first time using this drug in this way. Pereviously it was a one-time injection after a long bout of chemo. And am surprised to see that this is prescribed in this fashion regularly. We were under the impression from his doctor that use like this is unheard. It is nice to have a site like this.

How is this drug being tolerated by you/your wife/your son when used over
a long period of time ( year +) like this?

Have you found it to be successful (what rate) with melanoma?
Does anyone know of cord blood/stem cell use?

jhogue

me101805
Posts: 2
Joined: Nov 2006

I have just seen your message and wanted to tell you that I had the full year's treatment of Leukine. It seems to have been successful, as here I am 4 years after I had the melanoma, and have had no recurrences.

You can see details of my cancer and experience with Leukine just above your message.

I hope it is going well for your wife.

Class57
Posts: 1
Joined: Jan 2013

I was diagnosed with Metastatic Melanoma in 2005. I never knew where my primary melanoma was, but after treating a swollen lymph gland for infection for several months, a biopsy was performed resulting in the melanoma diagnosis. I had a pet scan which showed the cancer was localized in the right neck. Within a couple of days, I had modified radical neck surgery. 33 lymph glands were removed and 4 of them were positive for melanoma. Back then, the oncologist, suggested the most common treatment for melanoma was interferon, however the chance for good results were low, and the treatment made one very sick and mostly bedfast for a year or so. I refused that treatment. In the process of physicians deciding how to treat my situatiion, my wife just happened to run int a lady whose husband had been involved in a clinical trial using leukine to treat melanoma, and he had survived 5 years and was still alive. We relayed this information to the oncologist and he started working toward getting me involved in that clinical trial, but while he was doing that, the FDA approved Leukine for treatment for melanoma.

Before I started the Leukine treatment, I had and was limited to 5 very high dose radiation treatments to my neck area (I think the radiation technique came out of a medical facility in Texas. Melanoma does not respond to regular or low dose radiation teatment).

Then I had leukine shots 14 days on and 14 days off for 24 months. Each 14 days I was taking the shots, I would get to feeling kind of rough, but I would change the administration sites around, and I never did get any injection site irratation or soreness. I have a lot for which to be thankful - it has been over 7 years since I was diagnosed. I wish you well

 

MikeW1958's picture
MikeW1958
Posts: 9
Joined: Jan 2013

i am glad to see that you are past  7 years, i am about to reach my first year since diagnosis feb 2012

Sarah158
Posts: 4
Joined: Aug 2014

How are you doing?  Have not seen any recent posts on anyone for 2014.  My guy wants to try Yervoy..wants to communicate with you.  He is not very computer savvy so it is thru me....

Gma@lake's picture
Gma@lake
Posts: 1
Joined: Mar 2013

Class of 1957:  Thanks for sharing your history.  Your words are an encouragement to me.  I was diagnosed with stage 2a melanoma in Dec 2011.  I had a regional recurrent metastatic melanoma surgically removed in Feb 2013.  I went to Mayo in MN for a second opinion for treatment.  I have chosen to follow their recommendation to give myself the Leukine injections for 14 days, stop for 14 days and repeat this 28 day cycle for three years.  I am working with my local oncologist and can return to Mayo if needed.  I have just started the injections having received only two.  What side effects did you have?   I am having sternum bone chest pain for a few hours that is very uncomfortable.  I will talk to the doctor when I see him next week.  I am wondering how the next three years will go, but it is good to read you are apparently doing good after 7 years.

ddm1968
Posts: 2
Joined: Apr 2013

I am so happy to have found this site.  What kind of melanoma are all of you dealing with?  I was diagnosed with stage 4 choroidal melanoma in my right eye about 2 1/2 years ago.  I had plaque radiation and later eneucleation of my eye about a year ago.  I just learned that the melanoma has metastasized to my liver.  I am being treated at the Mayo Clinic in Rochester, MN and following 3 treatments with Stereotactic Body Radiation Therapy I will be taking injections of Leukine (14 days on, 14 days off).  I would love your advice and friendship as I start this new chapter in my fight against this disease. 

joelcairo
Posts: 8
Joined: Mar 2013

I hate to point people to external resources, but ocular melanoma is different from cutaneous melanoma in several important ways, and there are some groups devoted to it. There's an Ocular Melanoma Foundation that has a forum, and also a very active mailing list with an online archive called OCU-MEL. I assume they can be readily found in Google.

Sorry but I have no knowdge of stereotactic body radiation therapy or of leukine, but I do know there are other liver therapies that can be very successful. For example Isolated Hepatic Perfusion/IHP, Percutaneous Hepatic Perfusion/PHP, chemo-embolization, and SIR-spheres. It's very important to target the liver directly and aggressively if the cancer hasn't metastasized anywhere else.

 

ddm1968
Posts: 2
Joined: Apr 2013

Thank you Joel.  I found ocu-mel on the internet. It is a good site.  The sterieotactic radiation, which was beams of radiation aimed directly at the tumor in my liver, was done at the Mayo and is said to have good results.  The Leukine is to build up my immune system.  My oncologist deals with both kinds of melanoma, but I am torn.  The information I am reading about Dr. Sato seems to be encouraging.  Do you have experience with ocular cancer? 

thatsavage
Posts: 1
Joined: May 2013

I'm 61 and was diagnosed with Non-pigmented Nasal Mucosal Melanoma (stage 3 melanoma) a year ago.

Two treatments were recommended: 1.) hospitalized chemo with immune therapy, followed by radiation to the nasal/sinus area, followed by another 22 days of hospitalized chemo and immune therapy OR 2.) radiation followed by leukine shots (recommended by the Mayo Clinic in MN).

I elected for the radiation followed by leukine and the past four CT-PET scans (i year) have been negative.

Other than a small lump, redness, and some itching at each shot location for a couple of days there have been no other side affects.  My excersize level and energy appear to be the same.  I am told the melanoma will find a "work-around" to this therapy in 1 to 5 years; after that we'll target the emergant locations.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network