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Any metastatic melanoma survivors?

dawn144
Posts: 4
Joined: Mar 2003

3 months ago I was diagnosed with metastatic melanoma in my right frontal lobe. It turned out to be the size of a golf ball when I had it removed in December. I am only 29 and I am wondering if anyone else out there has any similar experiences.

The original melanoma was a small mole on my left arm which was removed when I was 21, 8 years ago. I never thought it would come back and here I am, in Florida, undergoing chemotherapy to battle this horrible disease.

Thanks for taking the time to read this and let's keep being positive so we can beat cancer.

Dawn
dawn144@excite.com

adroegmiller
Posts: 4
Joined: Mar 2003

Hi. I have not had metastic melonoma. I have had melonoma on my face and it was large and deep. I wanted to talk to you about really beating this cancer. Are you ready to succeed?

dawn144
Posts: 4
Joined: Mar 2003

Hey there!

I am ready to succeed...I am not ready to be beat, that's for sure. All is well with the chemo..so far anyway. I've had two MRI's so far and they have been clear :)

carrie2010
Posts: 8
Joined: Apr 2010

I will be starting interferon A here in about two weeks, I am scared to death about it. I am 25 years old with 2 young girls , a husband who is in the military ( who will be gone for most of my battle with chemo) and family who is 12 hours away. Is this the type of chemo your on and if so what were/are your side effects? Mine was found in the back of my head with a little bit of lymph node in it. When they did the sentinel lymph node biopsy and removed the margins everything came back clear. The doctor said the chemo is a preventive measure. I am diagnosed with stage 3A. Most of the posts I've read on here says that's a high stage to have. I know your no doctor but from what your told / been through the chances of it coming back are high?

ckeeble93
Posts: 1
Joined: Apr 2010

Carrie,

Hello, my name is Charmaine Keeble, and I live in Alabama. I was diagnosed in 1995, and then again, in 2002, I was diagnosed with stage 4 metastatic melanoma. Like you, I have two daughters ages 15 and 10 now they were 8 and 2 in 2002. I know how scared you must be at this time. If you need someone to talk to call me my cell number is 256.749.1161. I’m not crazy giving you my cell phone number. I just know how nice it is to talk to someone who has had and going through the same experience.

May, will be a year that I have been on Interferon A. I started May 2009 taken daily dosage's Monday through Friday. Since last June, I have been taken "Interferon A" shots three time a week which I give myself at home. The side effects for me were like having the flu all the time when I first started. Body aches, chills (mostly when I was taken it daily at the cancer center), and headaches. The pre-meds help a lot. There were a few times it felt like ice water was running through my blood and mood swings (still have). I have been able to continue with my schedule and my girl’s schedule. I may have slowed down just a bite, but I have learned only to do what you can, and you can’t will either take care of its self or finish it the next day. Remember the only way to being healthy is to take care of yourself first and then others I know it’s hard and to say and do when you have a family to take care. Talk to your girls, and explain to them. What is going own, believe me, I learned this the hard way. I also find it health for my girls to know everything that I am going through, and what they are going through.

I would love to talk more so please do not hesitate to call or email me ckeeble93@yahoo.com with any question you have.

DynamicDbytheC
Posts: 2
Joined: Nov 2010

Hi Charmaine,
I am stage 3 but am waiting for the pathololy reports to know what is next. I am scared when I see the range of survival statistics anywhere form 35-65% or less depending where I look.
Thanks for posting and giving me hope.
D

Guardianone 2000's picture
Guardianone 2000
Posts: 30
Joined: Jan 2012

Dear Charmaine,

Through his faith and a covenant with God, Miracles and medical history have been made.

While in Africa, David was shaving in front of a mirror, when he shut his right eye only to find he had no sight in his left eye. After returning back home to the United States, he went to his doctor and told him of the situation. After two precriptions of antibiotics and many test later the problem was still the same......surgery was required because of a melanoma tumor in the eye. They first wanted to remove the eye; instead they decided to put a radioactive plaque on the eye to kill the tumor at Duke Medical Center. The operation was a sucess; however what happened during or right after the operation was unexpected...

Imagine yourself standing in front of a team of the world's greatest physicians and they are telling you that the tumor dropped cells. You have metastatic melanoma cancer in the lymph system and it has spread throughout your lungs, liver and even in your brain. David was told he was in stage 4. It was so bad they couldn't even give him any experimental chemotherapy. For most people that would be the sound of devastation, and unimaginable questions as to why? To David it was one of the greatest miracle's he ever received. David looked up and thanked the Lord for being so sick that he would not have to die through the poison in chemotherapy, nor suffer the indignity that comes with the treatments. David knew his imune system was working overtime and the experimental chemotherapy would destroy his imune system and any chances of staying alive, due to the severity and advancement of his cancer.

The doctor told David they would try to keep him comfortable until the end. David believed the Lord had other plans and through his faith, the Lord and he could work it out. Find out how the cancer was gone. From any and all physicians the words they are using to describe this incredible happening is ‘miracle or immune’ ?

David will take you on his worldwide adventures where he helped people all over the world, and where his faith was all he had. Learn how David was stripped of everything he was, except for his dignity. See how he fought for the justice and the truth all the way to the Supreme Court of the United States.

Three Swords of One Light/ Seven Miracles of Faith, contains seven miracles which happened in David's life and God's blessings bestowed upon him during his hardest times.

See how his faith actually moved mountains and how throughout his life doors were opened even before David knew he was even going to need it. Most of the time doors were opened only after another door was shut first.

Find out how and why I am still alive and what the the leading physician's in the world are calling a miracle....and medical history. This was in 2004.

Guardianone 2000's picture
Guardianone 2000
Posts: 30
Joined: Jan 2012

Stage 4 met

I went to oncology last week and I was told the tumor in my lung was enlarged. Sarcastically said, my Dr. told me she didn't even need another Dr. to help see what she was looking at, because of the large size. That was the only laughing we were doing.

I knew that she was right, because I have been experiencing pain in my chest, again.
What we are not sure about is what the tumor is doing, because it is now 18 months since I had radiation in that lung and on that tumor. From what I understand 18 months is the time of radiation effects and some of this could be scar tissue or just fluid from the radiation. My oncologist told me she wasn't sure what to do at present and whether or not more radiation treatments could be done, due to the amount given previously.

I told her I was going to my Radiation Cancer Dr. on Friday the December 9, 2011 and we would wait to find out what could be done and more test if necessary. She agreed too, so we are waiting for the next step in my living with melanoma cancer.

Now as a side note: I went to my Eye Dr. at Duke yesterday on December 6, 2011 and again I was given news that my eye condition had deteriorated. I was told because of the radiation to my eye in 2003, my eye had more blood vessels growing inside and cutting off the ability for my eye to release fluids and therefore making my eye pressure to and in unsafe limits.

After consultation with the Dr.'s they decided to inject a medicine in my eye to stop the blood vessels from growing and allow my eye to drain properly. Then they put another needle in my eye to extract some of the fluid that was creating the pressure. Now, when I was done with this procedure the pressure was down to almost nothing and safe. I was given a prescription for more medicine and antibiotics to prevent infection.

I wish I could tell you how this felt, but I do not think you really want to know. They of course said they wanted me back in 6 months and that I might require more injections to fix the problem; however they weren't as optimistic as they had been in the past, because they considered this Glaucoma and I was told it was the worst stage of it and that eventually I could have my eye enucleated, if the pain became too bad. The one thing said that made me feel better was that because I am already blind in my left eye they could use laser to fix the condition or at least lessen the effects.

I will update everyone following my condition after I see the Dr.'s on Friday. Thanks everyone for your prayers and as God has blessed me, I hope and pray for Gods' will to be done and from there I will do whatever He has planned for me.

Please visit my website: bradleydallasnorth.net or .com

Nathan08
Posts: 3
Joined: Feb 2012

My brother Jeff has stage IV melanoma on his lungs and took his first treatment of Yervoy last week. He has to
Have fluid drained from his lungs daily. The side effects from the Yervoy that he has experienced so far is tiredness and
A rash on his legs. We are praying the Yervoy is working and the cancer is leaving his body.
Anyone out there ever taken the cancer drug Yervoy. Please tell me what your experience has been with this drug. Praying for
Everyone on this post. God bless you all.

MemphisMargaret
Posts: 18
Joined: Mar 2012

Nathan,
My husband had his first Yervoy this past Tuesday and radiation began this week as well. He is so very tired and has had some nausea. How is Jeff doing? Well I hope.

downs00
Posts: 4
Joined: May 2012

Jeff has made it past his fourth treatment of Yervoy. He goes back to the docs tomorrow to see how the treatments have helped him. We are praying for miracles. He's had hardly no side effects but seems to get tired easy. Other than that, God has been good.

MemphisMargaret
Posts: 18
Joined: Mar 2012

I hope you had fantastic results. My husband gets his 3rd Yervoy this week. Zelboraf is doing okay on a dose of 2 tabs twice a day. Only one night of diarrhea and still tires easily. We are going to try and attend our son's wedding this afternoon.

marlee425
Posts: 12
Joined: Apr 2012

Nathan,

How is your brother, Jeff doing with the Yervoy treatments? My significant other has Stage 4 melanoma. He had stereotactic radiation on the 3 spots on his brain; and had the first Yervoy plus Dacabarzine infusion on April 17. So far, so good. The next one is scheduled for May 8.

Praying for healing and a miracle,
Marlee

droadman
Posts: 1
Joined: Jul 2012

Nathan, how is your brother Jeff doing? my brother too is in stage 4 melanoma cancer and has started yervoy treatments.

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

i have had 6 treatments of yervoy, 2 more to go.  so far all i have is fatigue, itching skin, some diarrhea

felicia_franklinstull2's picture
felicia_frankli...
Posts: 4
Joined: Feb 2012

Flu like symptom,vomiting,muscle ache,joint pains,bacteria vomiting and outhers i remimber that much inleast.

felicia_franklinstull2's picture
felicia_frankli...
Posts: 4
Joined: Feb 2012

Flu like symptom,vomiting,muscle ache,joint pains,bacteria vomiting and outhers i remimber that much inleast.

lmaso1
Posts: 9
Joined: Apr 2012

My husband was on that for a year, he did pretty good, before each treatment he took tylenol & a benadryl. Which helped for pain & the flu like symptoms. Good luck!!!

rosebud1942
Posts: 1
Joined: Mar 2003

Hello, I am a thirty year surivor of melanoma cancer to my right leg calf and right hip . I had chemo and radation which I suffer from the damages from them but I am alive.Keep your chin up and smile.E=mail me back and I live in Flordia too.Carolyn

julian
Posts: 1
Joined: Mar 2003

Hi, my name is Julian.
I was diagnosed with metastic malignant melonoma @ 2 years ago. I am doing well, with no problems. I go every 3 months to my oncologist who is very good. I live in New Orleans and the cancer centre I have high regards for. I have read quite a few of the histories and I have not heard of Interferon being used. I was wondering if you were ever offered that option?

Take care Julian

carrie2010
Posts: 8
Joined: Apr 2010

I am getting ready to start chemo and radiation her in about two weeks, if you don't mind me asking what damages did the treatments do to you?

mc1984
Posts: 1
Joined: May 2010

Hi Carrie,

I did interferon back in 2008/2009. We stopped 9 months into the treatments because of neuropathy. I had stage 3 melanoma in 2008. I also had it twice in 1996. I still hurt today because of the neuropathy the pain Never stops. I pray you do not develop to many side effects. I also haven't slept through the night in over a year. I also have many sleepless nights. I quess I could be called Sleepless in Atlanta lol. If you ever need someone to talk to please don't hesitate to contact me.

Mark

vonnie4100
Posts: 1
Joined: Jan 2013

Hi Carolyn,

 

I have erad you post and wanted to see how you are doing!  My husband Mike has Stage 4 metastatic melanoma that has spread to his lungs.  He did, Radiation, Interferon, Yervoy and all did not work.  Docs want him to try Interlueukin.  Dont know what to do.  Please help.   Any info. on how you are doing or suggestions would be appreciated.

 

Mahalo,

 

Yvonne and Mike

 

APatient
Posts: 5
Joined: Apr 2003

First I d like to ask a question. Why is it
I cannot post a messg on my own here? I see
no where on this board for me to start a new
topic? Why? Can you help?
Next......I had a rare melanoma removed from
my scalp this past Aug. I now have in 2003
a mass inside and on the outside of my spleen
don't know how long its been sitting there.
It was found by accident on a M R I of
abdomen. The melanoma in scalp was a
cellur blue nevus . Anybody have melanoma
show up in there spleen and what could
be done about it. Im being told that
the whole spleen will have to come out.
please respond anybody..............
thanks

penlop
Posts: 3
Joined: Oct 2003

Hi, I'm 33 and I just had whipple surgery to remove a mass in my bile duct. It ended up being melanoma and it has spread beyond the margin. I'm waiting to get my PeT scan and go from there. I'm desperately searching for anyone out there who has had this and has any advice for me especially concerning treatment. I'm so scared, and I have a 4 year old son...I want to fight this but the drs don't offer much hope. thanks, my email address is jpniles@mhtc.net. penny

jerseygirl
Posts: 2
Joined: Apr 2001

Dear Penny, My heart goes out to you. My sister-in-law has just been diagoused with metastatic melonoma. She will know by the eand of next week what her treatments will be. It started with a mole on her arm. Two months ago she had surgey.

It now is in her lungs and back. I have been diagnoused with stage 3 breast cancer. I have had bi- latheral mastectomey.It's been five years. Please don't give up hope. I won't for her.You can't for your child. God Bless You both.

millard
Posts: 9
Joined: Aug 2011

Interferon will not help you. See a doctor that can make a vaccine or put you on a trial.

Some vaccines are no good, some are.

I am on MAGE and will know how its working when I have a scan in a couple months.

Take care

Lin

drewherndon
Posts: 1
Joined: Nov 2010

Try IL2

dfikaris
Posts: 1
Joined: Jan 2004

My good friend was just diagnosed with metastatic melanoma in his left frontal lobe. He had a mole removed 2 years ago from his back and the margins were clear and they thought they got it all. It was 7x5x6 when they removed it. He also has metastases to his lymph nodes and bone. He is married with 2 young boys. Do you know where the best place to go is? Who is leading the way in the area? My prayers are with you and your family.

peterdaly
Posts: 1
Joined: Jan 2004

I would recommend you look into the clinical trials at the NIH/NCI in Bethesda Maryland. In my mind Steven Rosenburg, MD is THE GUY! You have to jump through some hoops to get into the trials but it is well worth it. I (
stage III, 1 1/2 years from diagnosis) went to their vaccine trial and a good friend of mine (Stage IV) has been in 3 of their trials now with great results. It means traveling (covered by NIH) but it's worth it to work with the world's experts.

NanLHTJC
Posts: 1
Joined: Jan 2004

Peter . . . I am very interested in specifically what were the three kinds of trials that your Stage Iv friend underwent in Bethesda, with Dr. Rosenberg. And could you be more specific on what "doing fine" entails. Thanks NLHTJC

Jdecelis
Posts: 1
Joined: Feb 2004

I was first diagnosed with melanoma 4 1/2 years ago and 1 and 1/2 years ago it became metastatic with multiple tumors on and around my right breast. The original site was on my right side.

I visited a Dr. Morton in Santa Monica, California who injected the tumors with BCG, a tuberculousis vaccine to stimulate the immune response. The tumors began to puss out within weeks and were surgically removed with a mastectomy. A few months later more appeared above the original breast area and again injections into the tumors with BCG. They pussed out and some tumors disappeared and what was removed was necrotic (dead).

Occassional tumors appear on the skin in the same general area and have been removed.

Tried Lukine and Interfuron therapies but became resistant to the first and had lowered white cell counts with the second. Taking nothing now but will cat-scan/contrast or Pet scan in another month.

Most of my doctor friends thought I had 6 months but 18 months later still going strong.

John

ninja
Posts: 9
Joined: Aug 2004

John,

I am very interested in your story. Could you please tell me more about the vaccine you received in Santa Monica. What hospital did you go to?
Thank you and take care,
Ninja

ninja
Posts: 9
Joined: Aug 2004

Hi Peter,

Could you please tell me more about these vaccin trials?

Thank you.

Ninja

apaige
Posts: 1
Joined: Apr 2004

my dad was recently diagnosed with metastatic milignant melanoma he had a tumor removed from his lower back but recently found out there are leasions in his brain,and the melanoma spread to his lympnotic system .he is very dizzy,and in pain.if there are any positive and encouraging words from any survivors of this kind please let me know.I am praying everyday ...i am so scared, these are stories you here about and now im living it.

PatCross
Posts: 2
Joined: Sep 2004

apaige, Iam a matastised melanoma survivor I was diagnoised 20years ago I went to the University of Colorado a Doctor Bill Robinson was doing a experimental program with Interferon,I was one of three that survived out of 67 in the study. I know that it is still a very hard cancer to get a hold of,but if you can I would suggest that you call the University and get any information you can about new treatments and where you need to go to get it, good luck to you and God bless your father and family it was the scarious event in my life, please feel free to drop me a line anytime bye PC

grassland
Posts: 1
Joined: May 2004

Dear Dawn, I hope you are well. Please advise as to your current treatment. Have you heard of BRAF? Also, are you getting radiation. I am in Buffalo, NY and my father has metastatic melanoma to the lungs. Please write. Take Care.

yalleh's picture
yalleh
Posts: 36
Joined: Jul 2009

I have been battling for almost 5 yrs now. I had 5 tumors in my brain, 7 in my lungs and about a dozen others... Down to about half a dozen. The good news is it sounds like yours is a slow moving Melanoma but still the odds arent good. Mine is a very fast moving (uber aggresive) Melanoma.... but I'm uber stubborn and as of late have a chemo that seems to be helping. Keep up the good fight.

ihatemelanoma1
Posts: 1
Joined: Nov 2009

Hi Yalleh! Right now my nana is fighting melanoma that has spread to her brain. no other evidence of metastatic disease...just poof! to her brain. she is 72 has 2 tumors in her brain and has been treated with interfuron when she was cancer free,brain surgery to remove what they could of the tumor, had SRS on what was left over...which grew, and even after that a second appeared. She's undergoing 14 fractions of whole brain radiation given at a 2.5gy dose. I was wondering what your course of treatment has been? I'm really interested in your story!

Feel free to email me. I would like to chat with someone who has been through this and beat it...I can tell my Nana your inspirational story.

Anyone else who has dealt with Metastatic Melanoma to the brain or who's loved one has dealt with it, feel free to email me as well. Her prognosis is poor and we could use any and all inspiration.

Thank you!!

Kristen
kristensloan@ymail.com

yalleh's picture
yalleh
Posts: 36
Joined: Jul 2009

My course of treatment is the entire gamet and all the tricks in the book known to Oncologists. I started off with an 8 inch skin removal on my back as wells as all the lymph nodes in my arm pit (from stage 2 to 3). I did 1 month of high dose Interferon followed by 12 months of the inject yourself every second day (this was Stage 3 Melanoma). The tests came back clear with no Melanoma for almost a year after Interferon. It was then found that I had progressed to stage 4, so I become a lab rat for a new trial chemotherapy. After 3 months it showed no progress so I did biochemotherapy along with 3 other known Melanoma chemotherapies (IL-2 + abraxane, decarpozine and one other ). The tumors showed no more progression but it also had not gone away. SO I stayed on Abraxane and decarpazine in the hopes that we could contain the tumors in my hilar lymph node and my upper right lung. We would then remove the lung and lymph node. The tumors did not stay contained, they were now spread all over the lungs and throughout the body (but not the brain). I then went on another trial (which by the way is the one that is working but was not approved by the FDA because it has not shown high enough success). After three months it had further progressed and was now in the brain. I was taken off the trail so that I could get stereotactic raditation in the brain. I had to wait a month (off of treatment) before I could get the radiation on three tumors. So I did the radiation (at which time I now had 5 tumors in the brain but they could only work on three of them). I was then was tested again a month later. This time it showed that the tumors operated on were stable and the other two had gone away. I was then rushed back on the trial that looked like it worked and now here I am.

I'm sorry to say that I cant say I have beat it, I still have tumors in my lungs, brain and throughout the body, but I can say I'm in a much better position than I was almost a year ago.

I can tell you that what helped my wife more than anything is to focus her energy on something positive. She did a walk to raise money for melanoma (the website is AIM for Melanoma). I would also suggest (coming from the side of the person with cancer) that you live in the moment, spend as much positive time with your Nana as possible and if you can only spend a little time with her make sure it is good time for both of you. I know I had to shoulder the burden of many family members and its not fun or easy to do. I know I really appreciated a smiling face and a good joke (even if the joke was at my expense.. not sure if your Nana wants you to make fun or tease her).

Hopefully this helps and good luck for you and your loved ones

shumba
Posts: 5
Joined: Jan 2010

hi yellah
sorry about your condition,your story is simarlar to my wifes,she had a melanoma removed from her back 4years ago it was huge as it was misdiagnosed as a cyst,2 yrs ago she had a section of her intestine removed as it had colapsed,a melanoma was found inside{again missed}she now has them in her lung and liver and had 2 tumors removed from her brain on the 17/12/09 ,we find out what further treatment is needed this week,what interests me is the treatments you received as up until now they have only monitered her condition,and surgically removed the tumors,did you insist on them or were they offered to you,please let me know if anything has really helped,
keep on fighting and good luck

Misdiag1Fauq
Posts: 5
Joined: Mar 2007

Has she had the BRAF/NRAS/KRAF or C-kit tests? These are used for targeted therapies that are just in trials.

marlee425
Posts: 12
Joined: Apr 2012

My significant other has been diagnosed with a very aggressive melanoma, as well. It started with a spot on his back (misdiagnosed as a cyst by his family physician). After an appointment with a local general surgeon who did the first excision (with clear margins), we were sent to a second general surgeon for a larger excision. At the consultation, enlarged lymph nodes were found and we were off to the lab for a biopsy which indicated positive for melanoma. An MRI and PET/CT scan were ordered, showing no other hot spots other than the lymph nodes under the left arm. A second surgery was scheduled for a larger excision on the back and the removal of the nodes (17 total with 1 the size of a golf ball - 6mm - positive). Here again, clear margins. After 5 weeks of healing, we met with an oncologist and were given 3 options: Observation (not recommended); Interferon; or a clinical study with 3 arms - Interferon, Yervoy 3mg, or Yervoy 10 mg. We chose the clinical study which required another MRI and PET/CT scan. The PET/CT scan was clear; however, the MRI showed 2 spots on the brain which kicked him out of the study. The oncologist recommended Yervoy with Dacarbazine after the brain mets were taken care of. We met with a radiation oncologist who recommended stereotactic radiation. We then went to Johns Hopkins for a second opinion. Their recommendation was stereotactic radiation for the brain, but Temodor only as the chemo treatment. We opted to go with the more aggressive route of the Yervoy plus Dacarbazine. Prior to the stereotactic radiation, another MRI was ordered showing 3 spots instead of 2. The radiation procedure took place on April 11 and the first infusion of the Yervoy plus Dacarbazine took place on April 17 . . . so far, so good . . . with little or no side effects. However, our oncologist said some patients get through the first infusion and the second is the telltale.

Is this treatment similar to what you have done?

This is a horrible disease, showing low survival rates when I was researching and researching and researching some more.

It has helped me to read some of the blogs and see that there are more survivors battling this disease very courageously.

May we continue to pray, hope and believe in miracles.

Marlee

Terrified_mom
Posts: 3
Joined: Feb 2012

You are about as close to my son's (26yrs old)diagnoses as anyone here. He was to start a trial that was FDA approved in the USA but not yet available here except by "Special Access" namely the trial. The day he was to start we had our world come down on us and were told he had 7 brain tumours with 2wks without treatment and 2+months with to live... another doctor said with the Radiation he could have as much as 7 months. My son was EXCELLENT health before all this started in fall 2010 and at one point thought we were out of the woods but all that was happening was the hospital just never bothered to call us on the new scans last summer to say it had spread to his Ilium (one on each side) and a sub centimetre lesion within his liver... 3 months wasted before we found out.. well that was Jan 31 2012 when we got the devastating news about the brain tumours and he started Radiation immediately with the drug Decrodan (sp?) he is being weened off at the moment and last night was insanely hard. Tomorrow Valentines Day is his last Radiation treatment and honestly I have no clue what is in store after that until we see the doctor. He did tell us he could do the trial after the brain mets were treated but I have read different since then so just don't know and the emotional roller coaster is brutal for both of us. The steroid is causing rage outbursts and vomitting all kinds of thing thrush can't walk without assistance... ANY of this?? Have you gone thru?? and how are your tumours now? What other things have you tried?? Willing to swap emails/numbers to speak off the discussion boards We are currently doing fundraising to get the funds together to take my son elsewhere for better treatment as our local Cancer Clinic rank the bottom of the list and just last week the Head of Cancer Care at the hospital was let go with a hefty severance for not properly over seeing the program.. BTW WE WILL NOT GIVE UP RESEARCHING OR FIGHTING TO FIND TREATMENT ~ My son is a HARD CORE FIGHTER and we believe there's something out there ~ we just have to keep looking. God Bless everyone on here and may this disease leave your bodies so that you may all,live life with little to no limitations Chele

MemphisMargaret
Posts: 18
Joined: Mar 2012

My husband was diagnosed on December 19th. We start Yervoy on top of Zelboraf on Monday. We go for radiation consult on Tuesday for full brain radiation. No rage when my husband was on decadron. I sent you a friend request. Feel free to email me at gert42101@bellsouth.net and we can talk more.

lmaso1
Posts: 9
Joined: Apr 2012

My husband tried Zelboraf in the fall of 2011, but could not tolerate it. How is the Yervoy going?

MemphisMargaret
Posts: 18
Joined: Mar 2012

Tell me about your husband's issues with Zelboraf. We have been doing Zelboraf/Yervoy/ Full brain radiation. The week of Easter landed us in the hospital for a week. The doctor is of the opinion that the Zelboraf is what is doing it. The dose had been reduced to 3 tabs twice a day and he still was horribly dehydrated, he didn't know me for 2 days, severe diarrhea, didn't even know he was going...no strength. They took hi off both Yervoy and Zelboraf for 2 weeks and now he is a amazing. So they did a Yervoy treatment earlier this week...and no side effects...but he goes back on the Zelboraf on Tuesday but this time 2 tabs twice a day. 2 more Yervoy treatments so 5 more weeks, then they will do a PET and MRI to see where things are at. Keep me posted on how things are going for you.

MemphisMargaret
Posts: 18
Joined: Mar 2012

I am hoping the worst is behind us. My husband had his 3rd Yervoy last week. Not alot of side effects. The doctor feels the close to death experience we had last month was caused by the effects of the Zelboraf on my husband's liver. His does of Zelboraf was cut to 2 tablets twice a day rather than 4 and he is tolerating it much better. He had PET/CT and MRI last week. No cancer below the neck, the nine tumors in the brain have not grown. The only negative is one new tumor and we will go back to the neurologist for gamma on it.

marlee425
Posts: 12
Joined: Apr 2012

Terrified mom . . . what clinical study was your son going to participate in? My significant other was to go into a clinical study and prior to another MRI was ordered which showed 2 brain mets kicking him out of the trial. He recently underwent stereotactic radiation for the brain mets (actually 3, with another very thinly sliced MRI) and had his first infusion of Yervoy plus Dacarbazine. I, too, am terrified. May God bless all with healing.

1drusX
Posts: 1
Joined: Jan 2010

Dawn,

I had a melanoma tumor removed in 1997 and I'm still here. Mine also started as a mole then invaded my lymph nodes, then my brain. I did radiation and a vaccine study. Jesus got me through it.

I didn't do chemo, just radiation, but I still had trouble eating. It was very important to get good nutrition so I had a ton of juice during that period, and that really helped me out.

Keep smiling, keep laughing, start planning what you'll be doing in five years, pray, pray, pray, and you'll make it!

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