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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

nmcmcn
Posts: 1
Joined: Jan 2010

my grandad has 4 metastatic melanoma tumors in his brain that originally came from having a mole cut out of his back 3 years ago. he has had 4 sessions of intense radiotherapy but doctors have said that they can't cure it. I've read that some of you have said that you were given a vaccine test. can you remember the name of the trial?
thank you for help in advance and good luck to everyone !

DynamicDbytheC
Posts: 2
Joined: Nov 2010

is waiting for pathology reports and scared.

Kisma
Posts: 41
Joined: Dec 2009

I have had two cases of melanoma and several BCC. All of them in moles. You beat it once, you will beat it again and continue to do so. Like many of us here, we pay attention to our bodies and skin. Its a battle we will beat.

Keep your spirits up!

sbillinghurst
Posts: 3
Joined: Apr 2010

march 1 swelling in armpit
march 10 see doc
march 14 see physical therapist
march 16 see other PT, tells me to see orthopedic surgeon
march 20 ortho orders MRI
march 20 MRI
march 25 MRI leads to referral to oncologist
march 30 orthopedic oncologist is out of network
april 1 appt with oncologist, biopsy
april 4 diagnosis of melanoma, must be stage IV
april 6 PET/CT scan ordered
april 10 PET/CT shows no brain or lung tumors, but tumor is fast growing, has doubled in size, and reaches up above collarbone into neck, inoperable ("nonresectable")
april 14 appt with director of clinical trials, object is to treat systemically.

this means that no tumors can be completely eliminated, just reduced in size. IL-2 however, I believe, has in 10% of cases resulted in complete remission. IL-2 has bad side effects, and I see some stories on that subject here I have not read.

I wonder just when to expect brain tumors. I feel something in my head. Maybe I have been laying in bed too long. Certainly if the doc hasn't started treatment he must believe there is time. But, PET scans can't see a tumor if it is too small, so, if they were already there, how long does it take for them to get large enough to cause symptoms?

Or does it depend on diet?

donnaannand
Posts: 1
Joined: Apr 2010

Hi,

I'm 28 and 3 years ago was diagnsed with melanoma on my back, sentinal node biopsy came back clear however a CT scan last Aug showed it in my lungs stage IV. Doctors wrote me off, i went to mexico on the Issels programme and found it was in my brain so have had gamma knife radiation. I have just returned from the IAT clinic in the bahamas and feel extremely well. Have a CT scan this week and am waiting on the results of yesterdays brain MRI today so fingers crossed. Have changed me diet to organic vegan with fish and am doing juicing, definately no sugar and take lots of supplements, infrared saunas special baths (H2O2 bicarb and epsom salts) and coffee enemas, you name i'll try it!

Not ready to give up by a long shot so will see what results the scans bring!

All the best to everyone.

Donna

sbillinghurst
Posts: 3
Joined: Apr 2010

I asked before whether "it" depended upon diet, but I did not specify what. The next girl said she definitely did not eat sugar. On this page we all have been diagnosed or a loved one has, so it is not about a diet to prevent cancer, it is about a psychological response to the natural impulse to eat food that makes a person healthy but does not feed a cancer, if such food exists. Since the doctors have not said much about diet to me, it is probably harebrained to worry about diet. The cancer is the only thing growing in a cancer patient's body. Stable disease (SD), progressive disease (PD), complete response (CR), partial response (PR), in no particular order, were used by one author
http://jjco.oxfordjournals.org/cgi/content/full/35/9/507
but these are terms for use when radiation, surgery, chemotherapy, and biological therapy might be tried, and people may be switched from one to another in a span of weeks, when life expectancy is on the order of months, and I am glad of that. I bet the growth rate of a cancer depends upon its mutations. I have a fast one. My time scale up there was long. It got to be ten centimeters in its longest diameter (LD), so, these designations are to be taken with a grain of salt. It doesn't have to spread to adjacent lymph nodes, and five years symptom-free is not out of the woods. It doesn't have to metastasize to the most common organs. It's only a little bit predictable. If you don't get it in Stage I the prognosis is grave, no matter how shallow. Getting it means doing more than the doctors are willing to do. Don't be misled by something they say. If you've ever had it, insist on PET/CT scans every six months. It's not really curable. The whole medical approach needs top-to-bottom reform. Why have loved ones drive you home or stay with you in the hospital? Why let dermatologists monitor it without instruments? Why can't a tumor be partially resected? What is it that allows a tumor to have a border with normal tissue which constantly migrates into the normal tissue, vascular, bone, or soft tissue, and become nonresectable by virtue of the necessity for hacking two centimeters into good tissue to allow the wound a clear border to close? It grows quickly and can be found anywhere, so it just kills in almost every recurrent case. It is really two diseases IMO, and the term "early detection" as applied to moles and not metastases, given the long latent period, is medical hogwash.

Since I posted on the sixteenth, Starting Monday, April 26, I am to receive interleukin-2 alone. That is toxic, but it is not enough. It is my belief that vaccines have shown efficacy and should be standard.

ACS:: Dietary Supplements: How to Know What Is Safe:

http://www.cancer.org/docroot/ETO/content/ETO_5_3x_How_to_Know_What_Is_Safe_Choosing_and_Using_Dietary_Supplements.asp

sailingmaxi
Posts: 1
Joined: Jan 2011

hi, I've seen mention of "vaccines" but didn't see any response on what was in the response about vaccines or what they are to where to find them. Do you have any information you could share? I have a family member w/stage IV melanoma that does not appear to have yet spread to any organs but are knocking on the door. thank you-

Iwearblackforme
Posts: 6
Joined: Apr 2011

Hi the cancer vaccines are similar to vaccines for diseases children take. But they are different too. I am in a cancer vaccine trial. My tumor was MAGE-A3 protein based so I am in a trial (phase III CLINCAL NOT FDA approved double blind study) at Emory in Atlanta. It is a nationwide study with about 6 of us in Atlanta in the study so far.
So far side effects are tiredness and they say flu like. I have Just found I was tired and irritable the night of the shot and the next day and a little more emotional. Nothing else really. Don't know what theresults will be yet. Just started this month.

rianna
Posts: 2
Joined: Aug 2010

Hello Donna

How are you? did IAT treatment worked. I am trying to do a search about that clinic if it works for melanoma.

Thank you in advance

Meg1414's picture
Meg1414
Posts: 3
Joined: Aug 2010

I just found this site today and it's amazing that there are so many of us! I was diagnosed 8 years ago with stage 4 metastatic melanoma. It had started as a mole on my left foot and spread to 1 lymph node in my thigh. I did 1 year of interferon, and besides lymphedema in my leg now, I'm doing fine. However, now I am trying to get pregnant. I don't have an oncologist anymore (he retired a couple years ago) and wondered if anyone knows about my chances of getting pregnant after interferon. I remember that they told me there was a chance that I couldn't then, but that was a long time ago. Wishing all of you the best!

turtlegur_22
Posts: 2
Joined: Dec 2010

i was diagnosed also with this cancer stage 3 and wanted to get pregnant my doctor from military base said it was fine because interferon is given to pregnant women for other things also not to sure for wat but he said if i had wanted to get pregnant during treatment that i could. and your not on it anymore so should be fine i am only 21 so not sure if age plays a part in this hope this was helpful.

millard
Posts: 9
Joined: Aug 2011

Increasingly, clinics are giving up interferon as statistics show it will not prolong your life.
You need a better doctor or a better clinic. You are young and need something to effecttively protect you.
If thats all the military will do, then try the VA.

I sure wish you luck.

Lin

turtlegur_22
Posts: 2
Joined: Dec 2010

Hi, i was diagnosed with this cancer also stage three a , my oncolgist from a military base said it was safe for to get prenant on treatment because they give interferon to pregnant women with other diagnoses not sure for wat exactly but i was told it was safe for me to do so. Im sure sent you been off a while shouldn't be hard, im only 21 but dont think age play a part in this. Well hope this was helpful good luck!!!

Iwearblackforme
Posts: 6
Joined: Apr 2011

How Bad is your lymphadema? That scares me more than anything. I am back to working about Hal time and I'm a rehab manager in a skilled nursing facility so I'm on my feet all day. I'm also single mom with two kids and my doc keeps warning me about he lymphedema. So I'm just curious how your is and what u are doing with or about it?

young_survivor
Posts: 1
Joined: Jan 2011

im not sure about any statistics, but i was diagnosed with melanoma stage 2 in early october 2010 im 14 and had surgery early november 2010 i have a massive scar (8inches ) on my right arm reaching from a bit below my sholder to a bit above my elbow. im pretty sure im the youngest in florida so far

snickers1
Posts: 2
Joined: Jan 2011

I am new one here. I was diagnosised with Metestatic Melanoma Stage IV. I had a enlarged lymphnode on the L side of my neck. Had surg. to remove 47 lynphnodes on that side and a muscle. We can not find a primary, so this is what scares me. I am on my 4th of 5 radiation treatments. They told me there is no Chemo for Melenoma. Then I will start Luekine an injection for the immune system. Have you started Chemo, I am interested to hear that you are getting Chemo. Let me know how it goes and what it is! Take care

furkidsmom's picture
furkidsmom
Posts: 11
Joined: Jun 2011

Hi Snickers1 I was just dx'ed with Metastatic Melanoma, not sure what stage but I also have no known primary. large tumor on right side of my neck. Had a lumpectomy 3 weeks ago, facing Radical Neck Dissection next week. Then Dr. is talking 7 weeks rads and 1 year interferon... (must mean I have at least a year then). But I was on interferon before for my Hep C and it made me so anemic they took me off it after 2 months. I guess I am lucky as my PET scan showed no other cancer, but I have been told that although not unheard of M.M. with no known primary is unusual. I was also told that my kind of melanoma doesn't respond to chemo hence the immunosuppressive therapy. Am I correct in assuming there are other kinds of immunosuppressive therapy meds besides the interferon? This has all just piled up on me in the last month, so I am sort of overwhelmed by it all. If you or anyone could give me some feedback I would really appreciate it.

millard
Posts: 9
Joined: Aug 2011

Interferon will not extend your life one day. More and more clinics give up prescribing it. There are more effective drugs out there now. My first quack prescribed interferon for a year and I did not go back. I knew nothing but got information from an expert on the web and got a different doctor IN THE SAME ONCOLOGY CLINIC who gave me four choices. that quack should have recommended one but thats ok. I have the web and figured out which was the best for me and I am on it now.

Take care of yourself and get another opinion and think about what I said.

God be with you.

Lin

Kmilan
Posts: 1
Joined: Mar 2011

Am like you searching for answers My dad had a mole on his cheek we removed it in 2009 and now we found out that it is in lunges and the stomach anyone experience and survived such cancer in those areas?

jessicarhodes's picture
jessicarhodes
Posts: 15
Joined: Mar 2011

My daughter is 24 and she has it in her brain,lungs.breast,and throat.It metastisized to lungs in November and brain in january. She has done radiation to no avail. And is currently doing rounds of chemo. she has been battling melanoma for 6 yrs now. And yes many have survived this type of cancer. I hope we can add our loved ones to ths list

Iwearblackforme
Posts: 6
Joined: Apr 2011

Wow so sorry to hear about your daughter! Prayer is magical. I had melanoma on my shin 15 years ago and didnt get a single checkup for the past 10 years. I found a lump in my groin by chance in january and am so happy to say it had not spread further. I ha all the lymph nodes removed on my groin and pelvic areas but am not convinced we hot it all because of being told the same thing 15 years ago! I will say a prayer for you and your family!!

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

Jessica,

Imagine traveling to Duke Medical Center for what is called a Hail Mary chance for life. A team of physicians, the top oncologist in the world are reviewing your case file and assessing your condition to determine what course of treatment is left or available. When they have completed their evaluation, the decision is made, there is nothing can be done to save or prolong your life.
In 2004, I was sent home with less than 2 months to live (stage 4). The melanoma tumor which started in my left eye had metastasis throughout my lymph system, liver, lungs and brain.

I couldn’t even be given experimental chemotherapy, because it would have no affect crossing the blood barrier in the brain. When the Dr. told me this, I looked up and said, “Thank You Lord, now You and I can work this out together.” My Dr. looked at me like I was crazy and then he told me, “They would keep me comfortable until I was gone.”
As we left the hospital, I was in shock. I had to try and comfort my sister who had driven me that day. I was on large doses of morphine for the pain and was unable to drive myself. She was really upset about what the Dr’s. had said. I told her everything was going to be alright. Everything was in God’s hands, not mine nor the Doctor’s.
On the way home I shut my eyes and started thinking about the things I was going to miss. I wasn’t even going to see my daughter graduate High School later that year.

I thanked God for all the blessing’s I had had in my life. I never asked God to save my life. I did say “Lord, You know I have been all over the world helping people and if it is Your Will for me to come home, then I am ready; however if You give me the opportunity, I will write three books in Your Honor.”

In 2005, I fulfilled my covenant with God and I am here today. I still have seven nods in my lungs. After the second book was written, my doctor’s and I realized I had had a miracle occur. All the cancer was out of my body. I was immediately tested again with cats, pets, bone scans, x-rays and labs.

In May 2010, I had stereotactic radiation to stop the bleeding and kill the nod that grew into a tumor. I’ve had surgery, radiation, pain medicines and thank God for Dr.’s and scientist.
The rest of this story can be found on my website: bradleydallasnorth.net

Don't give up on God or yourself, nothing is easy about this disease.

Nathan08
Posts: 3
Joined: Feb 2012

Praise God you are here today to give others hope in
God. My brother has had his first Yeroy treatment. It's been
Rough on his body and docs given him 25% survival rate
But we serve a God who gives life and life abundantly. My
Brother has melanoma on his lungs. The lungs docs told
Him to go home and prepare to die. His cancer doc said he
Would try Yervoy and see what happened. My brother Jeff is
Starting to feel the side affects like tiredness and rashes on his
Body. We are believing for a miracle. Please pray for Jeff and
Believe with us. Thank God I read ur blog. It has greatly
Encouraged me. Be blessed as you walk in your healing.

MemphisMargaret
Posts: 18
Joined: Mar 2012

My husband has his first Yervoy infusion this coming Monday. I am wondering if you would mind keeping in touch about the treatments. Be Blessed!

marlee425
Posts: 12
Joined: Apr 2012

Memphis Margaret . . . How is your husband doing with the Yervoy infusions? My signifcant other had his first Yervoy plus Dacarbazine infusion last Tuesday. He seems to have handled the first one with few side effects . . . some lightheadedness and dizziness but nothing more. Our oncologist said some have no side effects with the first infusion; the second one is the telltale. Hope your husband is doing well!

downs00
Posts: 4
Joined: May 2012

My brother has had four treatments of Yervoy and goes tomorrow to get x-rays to see how the treatments have done. We are praying for miracles everyday. He seems to be doing good. He hasn't had any side effects but very little itching for a couple of days on his legs and he's not been on pain meds at all. Seems realy good. Gets tired a little quicker than the rest of us but that's about it. How's your husband doing?
Take care and keep up the faith....

lloyd03's picture
lloyd03
Posts: 7
Joined: Jan 2012

About 2 yrs ago in Aug. I had melanoma skin cancer on the right side of my back. They removed it and took a lymph node from under my right arm. All margins were clear = no cancer around the skin were the melanoma was removed. Until July 2011 when I had swelling under my right arm. I went in for a CT scan that showed the mass uner my arm was a lymph node and also showed leasions on my liver, left lung and left breast.... they remove the swollen lymph node that was tested positive for Melanoma Metastasis cancer.
Then I went for an MRI on my brain because that is one of the areas Melanoma Metastasis spreads, so they wanted to rule that out..and they did...good brain :)
They had me go in for a PET Scan to see if the lesions on my liver, lung, and breast were cancer... Mamogram and PET scan showed breast had no cancer :)
but the lesions on my lung and liver were cancer.
I have been going for chemo through an IV every 3 weeks. In January I will get another PET scan and that will tell me if I will continue with the treatment...do a New treatment...OR...NO treatment.
Although I have only been a Christian for about 10ish years, I put my trust in the Lord and in His Word " The Bible" He says.. He holds me in the palm of His hand, He says ...He will never leave me, His Word says... God will turn bad things into GOOD, His word says that... perfect LOVE throws out FEAR ...and if I have His perfect Love with me, and in me, what can I fear.... His Word says ....GOD has a plan for my life :) ....and so much MORE....I will hold onto GOD's Promises and Trust that they are for me :)
And so with TONS of Prayers from TONS of people all over the world.
ME being diagnosed with stage 4 cancer and about 7 Months of blooddraws twice ever 3 weeks and IV Chemo every 3 weeks= the drugs used were Zofram, Decadron, and Dacarbazine.
I was also drinking 4 or more 16oz bottles of waters per day and using high amounts of baking soda brushing my teeth and gargeling with it 2-3 times daily, and drinking it with a maple syrup chaser weekly, and a table spoon of honey with cinnamon weekly, they both helped with being tired and they are also known for healing qualities.
And with TONS of Prayers from TONS of people all over the world on facebook.
I was able to work about 3 weeks out of the Month and although my hair had some falling out it only thinned and I was able to have a short and sassy hair style :D
And even tough I was not able to find anyone who has had ( the same type of cancer) and was a survivor. I knew that it is GOD alone who HEALS ! and HE Can Do whatever HE will.
==Today I am HAPPY to Say==
I Am Cancer FREE = The PET scan results say NO Cancer.. Praise GOD.
So Keep the Faith and Keep Praying

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

I am so happy for your inpenetrable Faith. read my stories or articles here and on the messageboard, Spiritual, etc.... does using Jesus' name help or hurt religion. If you need someone to talk to about your situation and cancer I would be honored to share. I always praise God!!! I am also very thankful...

David

downs00
Posts: 4
Joined: May 2012

Wow.Your blob made me shout and give God all the Praise and Glory..... You are highly favored woman!!!!!

I am printing your blob to give my brother who has Stage IV melanoma on his lungs. He's taken his fourth treatment of Yervoy and done very well on this. He goes tomorrow to get his x-rays to see how well the treatments have worked on him. We are all praying for a miracle and trusting God for a victorious outcome......

Please say a prayer for him. His name is Jeff.

Be blessed.

Iwearblackforme
Posts: 6
Joined: Apr 2011

Dawn I am 40 and was originally diagnosed with a Clarks level four 15 years ago on my shin. They removed a golf ball size tumor in I'm groin and did A complete node dissection of my pelvic and groin areas this past January. I opted for a trial instead of the chemo because of the sickness and little help it seems with interferon chemo for melanoma. I am not happy for what has happened to you but glad to meet someone who is going through what I am. It is scary. I have two boys 8 & 11 and fighting like you!

millard
Posts: 9
Joined: Aug 2011

Yes, I have that too. Went from my arm to my axilla nodes which I had all removed. Surgeons took their time and cut around and may have spread it more. None the less for now they cannot find more cancer.

I am a stage three c.

I got mine around 2009 from a Mexican laser doc that used wrong laser on a birth mark. He knew not to do it but wanted the money.

Brain cancer is a different animal. In San Diego there is a clinic that only treats brain cancer.

How are you doing?

Lin

Terrified_mom
Posts: 3
Joined: Feb 2012

@ Metatastis (Millard ) PLS tell me about this San Diego clinic ~ PLSSSSSS ~ we can connect offline if you wish swap email/numbers I will give u mine if u r more comfortable that way but just pls promise to call or I can take yours We r willing to listen to anything truthful by those who have been there.

zuhlkekk
Posts: 2
Joined: Feb 2012

Dawn,

My fiancee had stage four melanoma ten years ago and has survived! He is a true testament to survival. Make sure that you spread the word to others about detecting melanoma early. There are some apps on smartphones for this. Checkout www.moledetective.com.

Kristi

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

my husband has had melanoma cancer since he was 17yrs old he tried to tell his mom that he had it and she told him he was lying so he just over looked it well when he was about 27 yrs old he was out on his own and decided to start the fight on this cancer thats when he found out what type of cancer he did have when he went to get it checked on it was at stage 3 there was a mole on the side of his face the cancer tumor was wraped around his jaw, eye socket, neck and sholder and going into his tempel region that was all taken out by surgery and he went through radation treatment here locally he had about 9 months of radation then he was in remission for like 7 months it came back around his heart which means he had stage 4 melanoma they put him on IL-2 and VEGF-trap for one treatment his body did well with the IL-2 but the VEGF-trap almost blew up his heart so the stopped the treatment immedatly and after 5 months of the IL-2 treatments it stopped the cancer in its tracks from going any farther to his heart then it shot down to his adrenal glands so they put him on a treatment called Yervoy he has made it past the 4th treatment which is farther than some has made it to hes a little weak on walking and on couple of other things but hes a fighter and he will never give up willingly he will go as far as his mind and body will let him he just had a cat scan today and we go back to Pittsburgh Friday to see how they looked i pray to god that we get good news that it has been treated and is gone....my husband is now 30 yrs old and most of the drs he has seen locally has said he wouldnt have seen til the end of the month, next month, the end of this year, next year, or even see 30 well he has proved all of them wrong he will be turning 31 in August :)

Nathan08
Posts: 3
Joined: Feb 2012

Felicia, how many times did ur husband get the Yervoy treatments?
My brother has stage IV melanoma on his lungs. He got his first treatment
Last week. We are believing God for a miracle. Docs have given him
25% survival rate. He's starting to feel the side affects.

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

Well on there ther is 4 treatments every three weeks I think if i remember properly this is her husbent Frank and it can be harsh and some say it has a 25% but it dependson some aspects of the cancer so in some cases some experts say 50% no remember this drug is dangeruse can cuse memory lost,weekness, i know in one case death it cuseed a a man have a bowl burst that had a bowl sendrum allso i know on this drug you will have to report almost any thing can be agervateing and this drug you have sharp stabeing pains or a steady pain thatis unbarble they tell you to report to the er. also my wife up there got the il2 and v-trap and il2 mixed up also. Remimber one thing also docs cant tell you that you are gona decess ive been told over 100 times i was dead man walken I was told i was gona decess in a week, even one time they gave me a day locl docs arnt always the best mainly here in West Virgina.

Amber_17's picture
Amber_17
Posts: 3
Joined: Mar 2012

Any Metastatic Melanoma Surviors?

Submitted by Amber_17 on March 17, 2012 - 1:11am

Hi!
I was 17 years old when I found out I had Metastatic Melanoma. I was shaving my legs at 15 when I cut my right leg just above the ankle, well I couldn't get it to heal right, played heck with it. It grew like a mole dose. Well two years and five doctors later, I find out its Metastatic Melanoma late Stage 3. So I go through Surgery after surgery, treament after treatment. When I was 18 doctors give me two year, again at 21 they gave 2 yrs, again at 24 doctors give me 3 months. At 25 I find out the cancer as reached the bone in that leg, doctors tell me, We apputate 6-8inch below the knee or your mom puts you in the ground? Well I allow them to take my leg, Which from what I understand the cancer is now at stage 4 and at 25 almost 26 I'm still here living life to the fullest. I'm welling to talk with anyone who want more info or just wants to talk. Feel free to messg me at anytime.

mark2012
Posts: 2
Joined: Apr 2012

Your an inspiration!!

SCARED NURSE
Posts: 1
Joined: Apr 2012

You Amber are a inspiration. My 35 year old daughter was dx. 10 days ago. She is a single mom of 2 and is a nurse as I am. To say we are scared is a understatement. She goes to U of M in May. I have hardly been able to function since we found out. I believe god led me to this website as you and every one else has reminded me that through courage and knowledge and faith anything is possible. Keep up the good work and thanks.

LynnLuc's picture
LynnLuc
Posts: 24
Joined: Sep 2010

Have you considered going up to the NIH in Bethesda Maryland? We used to live in Martinsburg and it's not so far. I am stage 4 and was givien 6-9 months and just celebrated 2 years of being NED No Evidence of Disease. I agree I don'think WV has the best doctors of melanoma. Most people die from melanoma and you need a specialist. Lynn

lmaso1
Posts: 9
Joined: Apr 2012

How is your brother doing on the Yervoy, my husband starts his next week. His metastatic melanoma started last year September, he has the BRAF gene and he started the Zelboraf but was unsucessfull in being able to handle the side effects. So they took him off of it & did PET scan all clear that was in November. Found another lump in same area last month, took biopsy, again cancer was scheduled to take all lymph nodes out but PET scan showed it has spread to his lungs, liver & spine, started Yervoy, wondering how things were going with your brother. Thanks!!!

downs00
Posts: 4
Joined: May 2012

My brother has taken all four of his yervoy treatments and goes tomorrow to Wake Forest Hospital to get x-rays done to see how well the treatments have done with his lung cancer. He has had little side effects and no pain while on the treatments. He does get tired easier than us though.Keep me posted on yor end as I will do the same.

Take care,

marlee425
Posts: 12
Joined: Apr 2012

I've been reading your posts. I'm new to the site. My significant other was recently diagnosed with Stage 4 melanoma. His is very aggressive. He had stereotactic radiation on 3 spots on the brain on April 11 and had his first infusion of Yervoy plus Dacarbazine on April 17 with few side effects. The second infusion is scheduled for May 8. Your story gives me hope that we will have more years together.

I pray that you received good news at your appointment in Pittsburgh.

If you'd like to stay in contact, you may respond on this site; or may respond to my email address at marlee425@gmail.com. I have not been successful in getting into the chatrooms.

This is such a scary disease, never knowing where or when it will rear its ugly head again. At this point, I'm reaching out to anyone and everyone searching for ways to fight it and survive it.

You are a good example . . . you are living with cancer, not dying from it.

Keeping you and the others in my thoughts and prayers,
Marlee

mark2012
Posts: 2
Joined: Apr 2012

I was diagnosed with metastatic melanoma back in 1998. It progressed and I lost my left leg to melanoma in 2001. 1 year later it was returning at rapid rate. In March of 2002 I was told I may not see New Year's 2004. I was stage 4 melanoma and I got involved in cancer Trial at the University of Pittsburgh. It was a 1 year trial. By the grace of God and the UPMC trial I'm here! Cancer free since July of 2004. Never give up, stay positve!!

marlee425
Posts: 12
Joined: Apr 2012

What drugs were used in the clinical study at the University of Pittsburgh? Reading the posts on this site gives me hope. When researching metastatic melanoma, the survival rates aren't promising. My significant other is Stage 4 . . . started out with a spot on his back, then lymph nodes, and now brain mets. He's had stereotactic radiation on the 3 brain tumors and had his first treatment of the Yervoy and Dacarbazine combination. While sometimes difficult to do, we are positive that he, too, will be a survivor.

LynnLuc's picture
LynnLuc
Posts: 24
Joined: Sep 2010

I notice the original post was made long before I was dx'ed with stage 4 melanoma. Back in 1992 I had a spot on the right side of my neck removed...it was lentigo malignia and was "precancerous". It came back in 1996in the same place, and instead of being anohter oblong flat freckle it was a purple/black pencil eraser looking thing.At the time I was busy caring for my son who was diagnosed with Desmoplastic Small Round Cell Sarcoma...he was diagnosed just before 14th birthday...I thought his cancer was a "real one" and mine would just be an irratating spot on my neck. My son died in January 1998. I didn't look after mine again until winter 2000. I had it removed along with 5 SLN. The biopsy was Malignant Melanoma. Clark's Level 3. Tumor Thickness 1.45mm. The Margins of Excision appear uninvolved. The lymph nodes were all clear. They didn't recommend anything further...not even scans.

Then in 2009 June something showed up on a chest X ray....I thought I was having heart problems....I had biopsy done at Mayo Clinic in Mn. Stage 4 melanoma. It was located in my mediasteniem...a 6.8 cent melanoma was in a lymph node and pressing against my superior vena cava.
To make a long story short- I was given 6-9 months to live. I had to begin with radiation and Temodar- it was only palliative care- to perhaps shrink my melanoma for a little while.
If it continued it would cut off the blood supply to the top have of my body. It was located in a place where the surgeon said ti was too dangerous to operate; He said it was difficult enough to get little nips for the biopsy via incsion in my neck.

It ended up stable until Feb 2010. It woke back up and I went to Mayo to beg for a thoracotomy. My surgeon agreed and he removed the 6.8 melanoma (thats the widest area of it- not the whole melanoma). I started MDX 1106/peptide trial as NED in fall 2010 and I continue to be NED and its been over 2 years. I also continue to get my booster IV's of MDX 1106 at Moffitt with Dr Weber every 3 months.
We moved to Florida so I could be closer to Moffitt. We had been living in North Dakota before beginning the trial.- Lynn www.gentlewinds.org

mainegal's picture
mainegal
Posts: 6
Joined: Nov 2005

Dropping a note as I am less then a month from my 6 years cancer free mile-miracle. Wanting to extend my story and offer hope to those of you newly diagnosed and or currently battling, or even new to becoming cancer free. Almost 7 years ago I was told to get my affairs in order, that I was looking at 6-9 months. My melanoma was in both my lungs, my liver, wrapped around my esophagus, all through my lymph nodes in my chest and two hot spots on two of my bones......9 months in and out of ICU undergoing High dose IL-2 and a complete overhaul of my diet and engulfing myself into the holistic world combined with traditional treatment of IL-2. Fast forward to here, now, sharing my story to offer HOPE and to let you know this cancer can be beat. Stay strong, and remember "You are here in this life because you are strong enough to be in it" Grateful for every day <3

marlee425
Posts: 12
Joined: Apr 2012

Mainegal -

Thank you for sharing. My significant other is newly diagnosed. Your post came at a good time. We have another MRI scheduled for Thursday. I've been very fearful of what Thursday may bring our way; however, your post brought me back to living in HOPE. This disease can be beat!!!

May you continue "NED"!
Marlene

rnike
Posts: 1
Joined: Aug 2012

Thank you mainegal, my father has just be diagnosed with symptons very similar to yours, he hasn't received much hope from any of the doctors or nurses that he has so far been in contact with and was begining to get dejected. Your post has given him renewed hope and a determination to beat this cancer, he has already started looking at chhanging his diet and looking at complementary practices. He is very keen to learn of the changes in diet and holistic practises that you employed and would be extremely grateful for any details you could provide.

lloyd03's picture
lloyd03
Posts: 7
Joined: Jan 2012

In Aug. 2009. I had melanoma skin cancer on the right side of my back. They removed it and took a lymph node from under my right arm.
All margins were clear = no cancer around the skin were the melanoma was removed.
--
Until July 2011 when I had swelling under my right arm. I went in for a CT scan that showed the mass under my arm was a lymph node and also showed lesions on my liver, left lung and left breast.... they remove the swollen lymph node that was tested positive for Melanoma Metastasis cancer.

Then I went for an MRI on my brain because that is one of the areas Melanoma Metastasis spreads, so they wanted to rule that out..and they did...good brain :)
They had me go in for a PET Scan to see if the lesions on my liver, lung, and breast were cancer... Mammogram and PET scan showed breast had no cancer :)
but the lesions on my lung and liver were cancer.
--
I have been going for chemo through an IV every 3 weeks. In January I will get another PET scan and that will tell me if I will continue with the treatment...do a New treatment...OR...NO treatment.
Although I have only been a Christian for about 10ish years, I put my trust in the Lord and in His Word " The Bible" He says.. He holds me in the palm of His hand, He says ...He will never leave me, His Word says... God will turn bad things into GOOD, His word says that... perfect LOVE throws out FEAR ...and if I have His perfect Love with me, and in me, what can I fear.... His Word says ....GOD has a plan for my life :) ....and so much MORE....I will hold onto GOD's Promises and Trust that they are for me :)
--
And so with TONS of Prayers from TONS of people all over the world.
ME being diagnosed with stage 4 cancer and about 7 Months of blood draws twice ever 3 weeks and IV Chemo every 3 weeks= the drugs used were Zofram, Decadron, and Dacarbazine.
I was also drinking 4 or more 16oz bottles of waters per day and using high amounts of baking soda brushing my teeth and gargling with it 2-3 times daily, and drinking it with a maple syrup chaser weekly, and a table spoon of honey with cinnamon weekly, they both helped with being tired and they are also known for healing qualities. I also had a Boost a day for energy with my black coffee.. and Milk of Magnesia or pink Pepto every so often :P blaa
And with TONS of Prayers from TONS of people all over the world.--Facebook Friends, their Friends and Church Members.
Also I was able to work about 3 weeks out of the Month and although my hair had some falling out it only thinned and I was able to have a short hair style :D
Even though I was not able to find anyone who has had (the same type of cancer) and was(fully cured)never having to go to a Dr. again.
I knew that it is GOD alone who HEALS ! and HE Can Do whatever HE will.
==Today as of 1-18-2012 I am HAPPY to Say==
I Am Cancer FREE = The PET scan results say NO Cancer.. Praise GOD.
Im in Remission. Rejoice and Praise the LORD with me :D :D
...
After my 3 months of no chemo, I had another PET scan 4-11-12 and the lung & liver are still clear :D
but they did see a spot in my right knee...not sure what it is and they did look at the old scans and saw that it was there and it has not changed in size... I will be having a Biopsy 4-27-12 and they see whether or not it's just an old injury...
I am sO-o Happy my lung and liver are still clear :D
My knee biopsy came back cancer Free. I go 7-1-12 for a CT scan ...Praise GOD !!!
the results are in from my scan on 7- 1-12... the Dr. says to come back for another scan in 4 months... so I go for another CT scan on 12-3-12

I have found some information on keeping your pH balanced that kills cancer cells...and I was pleasantly surprise that I changed my diet , not knowing I was raising my pH Level, and I will continue to monitor my pH now that I know :D
Praying for you and your family Keep the Faith ... to God be the Glory :D

http://www.onlinecancerinfo.com/docs/diet/pHbalance.htm

http://www.onlinecancerinfo.com/docs/cancer&pH.htm

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