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Metastatic Malignant Melanoma

justasking
Posts: 2
Joined: Apr 2009

My husband was diagnosed with Metastatic Malignant Melanoma just 3 months ago - with NO prior outside lesion/skin activity. At a routine checkup a spot was noticed on his lung..... Then from there CT scans, PET scans, ..... Biopsy showed Metastatic Malignant Melanoma, in the spine, hips, sacrum area, etc..... Ended up having a spine compression that required surgery, removal of the T-4, etc..... Then there was a lesion discovered on the brain, removed through Radiosurgery. He is being treated with Thalomid/Temodar. We are at the end of the first 8 week series of meds...... We have been told that the prognosis is grim at best ...... But what I am seeing now is my husband without any pain - at all. No pain..... is that possible?? Would the melanoma still be active without pain??? Is there reason to hope here (beyond the obvious, never give up type of hope....)????

Has anyone else been through this?? Is pain, or lack of, an indicator of anything here??

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Dear asking,
I am a malignant mealnoma survivor, too, and there were many times that I did not feel the pain from tumors. It didn't mean that the disease was not progressing; it was. There is hope, however! Don't give up! Ask your husband's doctors if they know what kind of Melanoma he has. There is a clinical trial that I am on that is very promising.
The trial is sponsored by Dana- Farber and Harvard. It is a clinical trial of the drug, Gleevec. It is open to Melanoma patients who have mucosal or Lenticular Melanoma. I have been on it for one month and am having a great response in tumor size and it seems to be very effective for many cancers, including Leukemia and Lymphoma. It is worth looking into. Any hope that you have is something to hang on to during these scary and frustrating days for you. Please know that we care and you are in my prayers. I have been battling this disease for over 18 months and was only given 6 months to live at the time of my diagnosis.
If you'd like to talk, please internal mail me anytime. I would be happy to listen and offer my support.
Much love,
Hollyberry
P.S., there are many clinical trials for Melanoma; if one doesn't work, keep trying. I am alive today because I keep trying new protocols!

justasking
Posts: 2
Joined: Apr 2009

Thank you for your input - and may God continue to bless you with your own struggle and personal journey. We will keep you in our prayers.

We are heading back down to MD Anderson next week for more test and will now have good questions to ask because of your response back. Honestly, it never occurred to us to ask what kind of melanoma.......

Are you familiar with the treatment cocktail that my husband is on? He was in soooo much pain prior to the spine operation, and then immediately following. To see him without pain is baffling to me. But you say that pain or no pain is not an indication of what is happening? Are there any signs to look for (outside of the normal tests - brain scans, mri's, etc....) that would be an indication of how the treatments he is on now are affecting the cancer?

May we ask how you were diagnosed? My husband had NO outward sign - to all purposes it is being assumed that his melanoma started internally..... He has lesions in his lung, liver, brain, bones (multiple: spine, ribs, sacrum, etc...), sinus cavity, brain, etc.....

I don't understand the no pain though.......

longingforhope's picture
longingforhope
Posts: 61
Joined: Apr 2009

Justasking,

Holly is your best source of information but I will tell you my husband has stage 3 malignant melanoma that has metastisized. His sentinel node was 5 cm and crumbled during surgery and he had no pain prior to that, just a highly suspicious mole that bled and he continued to ignore.

He ended up with all the tests and 2 major surgeries and 20 lymph nodes being removed. Now he is on Interferon, and I'm not familiar with your husband's cocktail but I can tell you I've done alot of research and this unfortunately for all of us is one of the most aggressive cancers. It can attack organs as it did your husband and there can be no visual signs. It also spreads through the skin, blood, bones and organs. The brain spot is cause for concern but if they caught that early he may have a fighting chance.

You need to google everything on his lab report, if you don't have it go get it tomorrow. Read it until you know it front and backwards. Make sure you find every term, what you can't find on the internet go find in medical books in your library. Arm yourself with as much information as you can and question everything they do. I have had to be a strong advocate for my husband and fought many battles but he is still here nine months later and they didn't think he would last long when this began. And fight your insurance tooth and nail for anything they try to deny you and if necessary get an Attorney like we did. Just get your battle gear on and fight because you don't have time to procrastinate with melanoma.

And remember you're online family is here to post with and to chat in the chatrooms. People are wonderful and you get alot of support. Hang in there and leave your nice face at home and put your game face on and buy some time for you hub. You are in our prayers.

Good Luck and God Bless

LH

btschoon
Posts: 1
Joined: Jul 2010

I had a spot that was melanoma on my scalp removed 2 years ago and each check up have been clean. Last week I go back to MD Anderson and now I have S 4 Melanoma in my lung. I have been looking at every web site and discussion board that I see about Melanoma in the lung to educate myself. Could anyone tell me if this is the best site for info or is there other links you have that will help in my understanding. I know chemo is first followed by surgery due to the location in my lung. I want to get in touch with those that are a few steps ahead of me so I know where this leads. Any help would be greatly appreciated.

Shines
Posts: 15
Joined: Jul 2010

Dear btschoon,
I am replying to your post. Hopefully this works as I've never replied to anyone before. You were asking about discussion boards etc. I personally don't have melanoma. My husband does, or I should say he did. We just found out last week that his SLNB and 2nd WLE came back clear. The website I found to be helpful was the Melanoma International Foundation (MIF). It is very easy to navigate through the website as it is divided into different stages. I found this to be the most help while my husband was going through his cancer. I still feel like part of the family and check in daily to see how everyone is doing. I hope you try it.
The following is the web address: http://melanomaintl.org/
Wishing you the best.

livinginthemoment
Posts: 5
Joined: Apr 2009

Keep hoping,
I too am a Stage IV malignant melanoma survivor. I say survivor because I discovered the first tumor over a year ago and have experienced wonderful quality of life since. I have metastatic disease which means the cancer has spread through the blood to several locations. Right now I am not on any chemo nor am I in any pain. In fact I have never taken any chemo because doctors have seen very little success and because I have chosen quality of life rather than quantity. I feel great and am doing everything, with no limitations.

My question is - I have just been approved for Gleevec. Should I take it? Will it change my quality of life? I am just wondering if it actually prolongs life. I know I can't be cured, but of course, I want to live. I will say I am very peaceful about my decisions so far. I am a Christian and I have many, many people praying for me. That has given me the peace that I feel and I do believe in miracles. I actually wondering if since my cells were tested and the doctors think my cancer will respond to Gleevec that maybe this a sign from God to try it. It is so hard to know.

thanks for writing.
Jeanne

Misdiag1Fauq
Posts: 5
Joined: Mar 2007

Was mis-diagnosed from 2002-2006. Went to stage IV in March 2007. On iL-2 2007-2008 stable for 20 months. Melanoma went wild, started Gleevec in March 2009 - Stable again. Like to talk to you about the gleevec effects. Usually on MPIP.org as JerryfromFauq. How do I internal mail you?

lanie940's picture
lanie940
Posts: 492
Joined: Jul 2009

I'm wondering if you did this trial. I had breast cancer. My Oncology Surgeon 's specialities are breast cancer and melanoma, he was involved in this study:

http://www.mystlukesonline.org/about/news/allentown-woman-melanoma-trial.aspx

Elevatorman
Posts: 1
Joined: Nov 2010

My wife Karon was diagnosed with this disease 12 days ago. What a whirl wind! Dr. wants to try to get her in a clinical trial at either Johns Hopkins or National Cancer Institute in Bethesda Maryland. What do you know about either of those institutions? I have been speaking to a friend who recommends the MD Anderson Hospital in Houston Texas. Feels like my heart is being ripped out of my chest. Gave her 9 to 12 months to live. I am looking for directions, don't want to make a bad decision.

Sonny

Shines
Posts: 15
Joined: Jul 2010

Sonny,
I'm so sorry to hear about your wife Karon. My husband was diagnosed last year but doesn't sound like it had gone as far as your wifes. Please do not go by the number of months to live as who knows what treatment choices you will be making and if you might be able to beat this beast. I also have heard about MD Anderson but haven't dealt with them as we are on the West Coast. My niece and I are leaving hopefully Thanksgiving Day as she will be going to Johns Hopkins in Baltimore for a five way kidney transplant. So even thou I haven't dealt with melanoma there I have been there for kidney transplant and love the doctors and staff. I would like to believe that whatever or whoever you choose for treatment that it will work and you will have many more years to come with your wonderful wife.
My thoughts and prayers are with you.

washoegal
Posts: 45
Joined: May 2010

A little more info on your wifes situation and where you live would be helpful, but overall I would suggest you choose a location close to home. Any of the instutions you mentioned a great melanoma centers. The question is do they offer a trail to meet your wife's needs.

I agree, disregard the numbers. I HATE that kind of attitude.

P.S. Might have better luck with your posting if you didn't hide it in the middle of another post.

livinginthemoment
Posts: 5
Joined: Apr 2009

I too have Stage IV malignant melanoma and have no pain. I have been "healthy" for 13 months. The original tumor was not painful, it was just large and in a very uncomfortable location. It was removed in Nov. and in Jan. I flew to the holy lands and Egypt. In March I went to Disney World and spent 6 day with my son. Life is good and I'm squeezing as much fun out of it as I can. I am a Christian and every day I thank God for that day. I try not to worry, because that only spoils the moments I have. I don't know how long God wants me on this earth, but as long as I'm here I'm going to rejoice.

So please enjoy this time while your husband is not in pain.

Jeanne

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Dear Living,
Your attitude is wonderful and I wish you all the best in your battle. I have been taking Gleevec for 4 months and have had MIRACULOUS results; I had metastases everywhere and the Gleevec has gotten me down to 3 tumors. It is miraculous because I had many brain tumors, as well, and I was not supposed to be a candidate for this protocol but, the radiologists thought my brain tumors were vascular abnormalities. When I should have been on my death-bed, the Gleevec went to work and destroyed all of the tumors in my brain and most in my body.
I would highly recommend you get on this medication. It has saved my life; as I stated earlier, I did not feel any pain from the tumors spreading but, they did. The Gleevec may give you a few belly aches in the beginning and some edema, but it is soooo worth it!! I wouldn't be alive today without this medication.
Good luck to you; you are in my thoughts and prayers.I, too, am assured of my place in Heaven but, I have a family to raise and many more things to accomplish before I go home to rest. Wishing you the best
Hollyberry

sharmon0490
Posts: 3
Joined: May 2009

Your post gives me so much hope, My husbands melanoma started under his toenail and he is being tested now. he just became stage 4 with melanoma in his lungs.

Thanks again.

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

Not on Gleevec but Ipilumumaab and also seeing the same Miraculous results I have also not felt anything (5 brain tumors, 6 lung tumors and another dowzen in the body)... i had a tumor in the lungs bigger than my fist and one right behind it in a lymph node the same size. The two squeezed the main artery in my heart so that it was only 10 to 20 % open and through the hole thing I never felt anything.

Keep up the good fight and enjoy every day.

packy1
Posts: 3
Joined: Aug 2009

my husband was diagnosed 5/5/08 with stage IV. He had a brain tumor removed on that date then radiation and chemo. Now he is scanned every 3 months. He will be scanned in 2 weeks. We live for a good sign every 3 months.

Mayflowers
Posts: 1
Joined: Apr 2012

HI Packy1. I am new here. I am curious as to symptoms leading to brain diagnosis.

I was diagnosed in 1992 with mid-central back lesion, and have been through numerous resections through 2003, including small intestine, chest wall, thigh and glutes, multiple lymph nodes. 2003 was my last known tumor and I have been disease free since, BUT I have not had a brain MRI in ten years.

I have been dizzy and fuzzy headed for several years (could be anything), had a supraclavicular lymphadenopathy for 4 years. I am tired all the time now and have developed severe anxiety along with mild headaches and mild nausea and mild low back pain for several months. CT of chest abdomen and pelvis are OK (no typical presentations) according to my doc.

This may be nothing, or nothing related to melanoma, but no one has been able to relieve these symptoms and it just occurred to me that I have had no brain check for ten years.
Worry overcomes me rarely since I am a miracle according to statistics but I do not want to be ignorant. Your help and any others would be greatly appreciated. Thank you.

Misdiag1Fauq
Posts: 5
Joined: Mar 2007

If one's primary is unknown, I recommend getting the c-kit over-expression test run on a tumor. The first c-kit test is a simple stain test that can be done by any laboratory. If positive then go for the 2nd c-kit test (C-kit DNA mutation test). If both tests are positive, then a Gleevec type chemo stands a 40-50% chance of helping one. I spend most of my time on the MPIP.org as JerryfromFauq.

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

I have Metastic Melanoma stage 4 with tumors in the brain, lungs and throughout the body. I have had no sign nor I have I ever actually felt the tumors or any other kind of pain. At its worst I would cough and not know why (I thought it had something to do with the lung tumors). The fact was I cough because the tumor in my lung and the lymoh node right behind it were so big they were choking the flow of blood to my heart so I would cough to move the tumor enough to get enough blood flow. I know that may not be what you wanted to hear but also know that I have been living with this for 5 years even when I was told I had only a few months to live. So never give up hope and always live everyday to the fullest!!!

PamandKel
Posts: 1
Joined: Jul 2010

My mom(age 77) is Stage 1V metastatic melanoma with brain metastasis. Started on Temodar back in Feb 2010. Lung tumors grew, after clean out period started Paclitaxel without success. A 3cm tumor was removed June 9. Received 10 days radiation for small brain tumors. Began Iplimumab July 7. No side effects so far. Baseline PET scan show lesions "too numerous to count". Large tumor in her stomach causing pain. Mass on right thigh causing pain. Any thoughts as to pain control or her prognosis? Due to tumor it's difficult to get an understanding of her type of pain. Difficult to get her up and moving. Also difficult to keep her positive. The melanoma found on her lung was asymptomatic. Was found during stomach CT scan for diverticulitis Dec 2009. More aggressive than we had thought.

sfrey
Posts: 7
Joined: Mar 2010

Hi PamandKel,
My bro in law (35) also has tumors all over him. He is in a tremendous amount of pain due to tumors touching nerves. He has done radiation, chemo, interleukin, and just recently 2 treatments of ipilimumab...was pulled off trial Dr said not working.
This week he will go to an alternative dr to discuss further options.
It is a very aggresive cancer, he was diagnosed Nov 2009. We are totally racing against time.
A website for you to check out if you want
http://www.cancertutor.com/index.html ....lots of information, but it is helpful.
Kevin (my bro in law) takes pain med patches prescribed by dr.
feel free to e-mail me anytime.

Sarah~

Afamily Member
Posts: 1
Joined: May 2012

My sister had malanoma 2 yrs ago..she had chemo and beat it. Last Tuesday she went in to the emergency room because her leg was giving out and her hip was hurting lots. She had a MRI and PET Scan n found that the malanoma had spread. She had it in spine and 3 small tumors in brain. The doctors give her 2-4 weeks. This was devastating to our family because we had no clue this was going on...she thought it was a pinched nerve. Does anyone have suggestions as to what treatments may prolong her life. She has 3 small children. Thank you all!

marlee425
Posts: 12
Joined: Apr 2012

To A Family Member -

My significant other was diagnosed with metastatic melanoma earlier this year. It started with a mole on his back, traveled to lymph nodes, and now three small spots in the brain. He had stereotactic radiation on April 11 and started a combination treatment of Yervoy and Dacarbazine on April 17. The initial report of his latest MRI on Thursday is that there are no additional lesions and the three are not any larger. They appear to have dark centers on the MRI which indicates they may be dying. We are waiting to get the final report from the radiologist . . . fingers and toes are crossed.

While melanoma is uncurable at this time, there are some new drugs being used which show promising results; as well as some on the horizon.

We can never give up hope. Doctors may place a time limit; however, they don't know everything. God is the healer; the doctors are merely the tools to carry out the plan.

Thoughts and prayers are with you!

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

http://www.onlinecancerinfo.com/docs/diet/pHbalance.htm
I added brushing my teeth with baking soda and drinking it with water about a teaspoon full a day for mouth sores and had Milk of Magnesia every so often because of stomach problems while I was on Chemo. I was on Chemo for 7 Months and I have been cancer free for the last 6 month now... My cancer from Melanoma spread from my back to my right lymph node under my arm to my liver and lung.... My chemo was Zofram, Decadron, and Dacarbazine, but my Dr. said I will go on Yervoy if the cancer comes back... I found this information this week about keeping my PH level on the normal to high side. I went this week to the Vitamin Shopp and purchased some pH strips to try and keep my pH normal to high range and I went for another scan yesterday... everything is worth a try... Praying for you.... may the LORD BLESS you all.
http://www.onlinecancerinfo.com/docs/cancer&pH.htm
You might read this more then once because I'm letting everyone know!!!
I don't know if the change in my diet had anything to do with me being cancer FREE these 6 Months but Everything is worth a try. I'm praying for another 6 Months.

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