Recurrant Melanoma

khennessy

My husband was in remission since Christmas 2003 from Stage 4 melanoma. We have recently found out that the cancer has returned. The mets are in his brain with a thickening of the brain lining. He is 44 yrs old and a fighter. We never thought we would be dealing with this again. Knowing it is in his brain is very scarey. He has to go in for a spine MRI and a spinal tap. They are looking to see if the melanoma is in the spinal fluid. They have him on medication for nausea and the killer headache that he constantly has. I feel so helpless that I can't take the pain away. He can't sleep. He says that he just can't get comfortable because his head hurts all the time. The did put him on steriods to help the brain swelling. He has lost 22 pounds in about 5 weeks. He is not a large guy to begin with. I am nervous for him, but I am trying to be strong again. I found the strength before to help him through this, I can find it again.

Brittny09

Finding strength
My husband is also suffering,and I am trying to find strength to keep hoping.... He has melanoma that has spread to both lungs. It all started with a red, bleeding spot on his cheek in 2005, which the doctor did not think was anything to worry about. In 2008 a lump appeared in the same area, again the doctors did a mistake and did not send this for analysis. When another lump started growing, they eventually had it checked for an infection, but the message we got back was devastating - melanoma. So he had an operation in Jan 2009, removing all lymphnodes on his left side of the neck, damaging a nerve to his shoulder and had radiationtherapy,only to find some months later that the cancer had spread to his lungs. He has had chemotherapy without success, he is losing weight, and is depressed. We have a daughter, age 15, and I know I have to be strong for her as well. I have just joined CSN, and find help in reading how other people deal with similar situations. The country we live in does not seem to have much support for cancer patients and their families. But I am not going to give up!!!

DC_WYTE

Brittny09 said:

Finding strength
My husband is also suffering,and I am trying to find strength to keep hoping.... He has melanoma that has spread to both lungs. It all started with a red, bleeding spot on his cheek in 2005, which the doctor did not think was anything to worry about. In 2008 a lump appeared in the same area, again the doctors did a mistake and did not send this for analysis. When another lump started growing, they eventually had it checked for an infection, but the message we got back was devastating - melanoma. So he had an operation in Jan 2009, removing all lymphnodes on his left side of the neck, damaging a nerve to his shoulder and had radiationtherapy,only to find some months later that the cancer had spread to his lungs. He has had chemotherapy without success, he is losing weight, and is depressed. We have a daughter, age 15, and I know I have to be strong for her as well. I have just joined CSN, and find help in reading how other people deal with similar situations. The country we live in does not seem to have much support for cancer patients and their families. But I am not going to give up!!!

Hello Brittny
Hi, I had the same lymph surgery. That is where they found mine. They still haven't found any skin leision. The surgeon warned me about the possibility of nerve damage, but I got lucky. I have a scar from the tip of my left ear to the center of my collar bone.
I am very sorry about your husband. I chose to pass on chemo/interferron and do a clinical trial. What area of the country do you live in ? There may be one in your area. Or if you get to one it may be worth it. Mine involves a vaccine to train my immunne sys to find & fight it.
It is at University of Chicago / Dr. Gajewski. They are currently working with patients who have melanoma spred to the lymphnodes, but he may be able to lead you in the right direction.
Ask your Melanoma/specialist if you don't have one get to one because it is different from other cancers. DAVE

Brittny09

DC_WYTE said:

Hello Brittny
Hi, I had the same lymph surgery. That is where they found mine. They still haven't found any skin leision. The surgeon warned me about the possibility of nerve damage, but I got lucky. I have a scar from the tip of my left ear to the center of my collar bone.
I am very sorry about your husband. I chose to pass on chemo/interferron and do a clinical trial. What area of the country do you live in ? There may be one in your area. Or if you get to one it may be worth it. Mine involves a vaccine to train my immunne sys to find & fight it.
It is at University of Chicago / Dr. Gajewski. They are currently working with patients who have melanoma spred to the lymphnodes, but he may be able to lead you in the right direction.
Ask your Melanoma/specialist if you don't have one get to one because it is different from other cancers. DAVE

Clinical trials
Hi Dave,
Your operation sounds very similar to the operation my husband had. We asked for clinical trials already in January, but the vaccine trial they had going in Oslo ( yes, we live in Norway!) was closed. When we knew that he had multiple pinpoint tumors in both lungs, we asked again for him to join a clinical trial. This was in June, and they told us that there were no trials suitable at that time, but possibly later, and they advised him to have DTIC chemotherapy. According to the cancer-doctors at our hospital, the only chemotherapy used for melanoma in Norway. What they did not tell us was that DTIC-treatment excluded him from the MAGE-trials in Oslo! So here we are, an Avastin-trial in Bergen is our hope now...
My husband is physically strong, and has recovered from chemotherapy, so we cannot give up!!!
He has never been open for alternative medicine, but after all the negative experiences we have had with doctors and hospitals, we are searching for anything that has had positive effects on cancer. But at the same time we know that we have to be careful!
Thank you for telling me about the trial in Chicago - wish we lived in USA - seems to be many more options in your country! Hope the vaccine will work for you. BRITTNY

winterquilts76

Brittny09 said:

Clinical trials
Hi Dave,
Your operation sounds very similar to the operation my husband had. We asked for clinical trials already in January, but the vaccine trial they had going in Oslo ( yes, we live in Norway!) was closed. When we knew that he had multiple pinpoint tumors in both lungs, we asked again for him to join a clinical trial. This was in June, and they told us that there were no trials suitable at that time, but possibly later, and they advised him to have DTIC chemotherapy. According to the cancer-doctors at our hospital, the only chemotherapy used for melanoma in Norway. What they did not tell us was that DTIC-treatment excluded him from the MAGE-trials in Oslo! So here we are, an Avastin-trial in Bergen is our hope now...
My husband is physically strong, and has recovered from chemotherapy, so we cannot give up!!!
He has never been open for alternative medicine, but after all the negative experiences we have had with doctors and hospitals, we are searching for anything that has had positive effects on cancer. But at the same time we know that we have to be careful!
Thank you for telling me about the trial in Chicago - wish we lived in USA - seems to be many more options in your country! Hope the vaccine will work for you. BRITTNY

2nd go around for me
When I was little we lived in Florida my mom took me to our family doctor to have a birthmark on my left side looked at because it was getting bigger and changing colors, the doctor told my mom it was nothing and could have it removed when i was older for cosmetic reasons. when I was 11 we lived in Missouri and it started bothering me(itching brusing) andmy mom took me to a dermotologist, he looked at my side, left the room and came back with 5 more doctors, they all told my mother that i had melonoma skin cancer and needed to have surgery & tests done right away & that it was rare for kids to have that type of cancer.a couple months later I had melanoma removed from my side. It was 7inches long and went between my ribs and into small portions of my lungs. Over 200 stitches inside & out. they told my mom that I would be lucky to have 6months left and not to even bother with chemo or radiation. We moved back to florida after that to be closer to family. I went to the doctors every year for check ups and minus the really bad colds i got(mostly pneumonia) i was ok. they started me on immune therapy when i was 19 because i could barely go a month without getting pneumonia/bronchitis. I am now 32 and found out almost 3 weeks ago that it's back on my left shoulder and precancerous melonoma cells on my right arm(i had moles removed there), i'm going this sat to have more tissue around the area taken off and start a new type of immunotherapy, IL-2. I havne't talked to my doc yet about how often it's done, basically any of the specifics, at the same time I found this out i found out i have heart disease and some damage to my left ventricle & tricuspid valve that nothing can be done for until I have a heart attack, so i wasn't really paying attention when I should have been. aside from being tired occassionally I feel great. My sister thinks I should cry more like she does and my mom thinks i'm not taking this seriously because I haven't discussed funeral arrangements with her. I've already made up my will(2005) and my husband knows to bury me in georgia other than that I don't feel the need to dwell on it. i started back to school for medical transcripionist(i'm currently a certified nurse assistant) and some of my family thinks it's a waste of time and money. I'm trying to be the optimistic that most of my family is and look to the future and will myself into feeling better & being in remission, but don't know the polite way to tell others to butt out if they can't speak nicely. I only told 3 people at work cause I don't know how others will react to the news. my boss just found out yesterday and she's already asking if i need to reduce my hours at work so i won't get stressed out. I just wanted to be treated normal and not babied or like i have 5 feet growing off the top of my head. sorry to have gone on for so long, don't really have anyone i can tell all of this to. thanks for listening.