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Old 06-09-2005, 02:31 PM   #1
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deejavu HB User
So Scared about my Brother....

Hi everyone,

My baby brother had his left eye removed due to melanoma and he is waiting for his prosthetic eye.

During his wait, Sloan-Kettering keeps checking him and I found out this morning that they told him he has "spots" on his liver and kidneys plus an Aaneurysm that he was told was a 4.

He is so young and I am terrified for him. He doesn't want to talk about it right now and I feel so helpless. He is extremely depressed and I hope his depression passes.

I can't stop crying as I love my brother so much.

Does anyone have any idea what these Spots mean?

I would appreciate any information you could give me.

Thanks,
Denise

 
Old 06-10-2005, 06:02 AM   #2
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happyelf HB User
Re: So Scared about my Brother....

deejavu--I'm so sorry about your brother. I don't have any experience in the area of melanoma, but I wanted to reply and let you know you're not alone. It's hard enough to go thru this with your baby brother, but then for him to be hit with spots on the liver and kidneys feels like another blow. Spots on the liver don't always mean cancer--they can mean fatty cysts or tumors-which are benign and very common...but when they're coupled with spots on the kidney, I couldn't say what that means. Itoo want to believe it's nothing. I'm sure he's depressed, and you're grieving for him as well. Cry if you need to--anything to help you get thru it. Is he getting any help from a cancer support group? Are you? Some ppl find those groups very helpful. Some ppl don't want to have anything to do with them. Everyone's different and deals in their own way. You didn't say how old he is or how long he's had melanoma. Did they mention to him what THEY think the spots are?
Come here to vent...I can listen if you need an ear. And, as you know, there are wonderful experienced ppl here who can offer advice. Sending good thoughts and prayers to you and your brother...
Gina

Last edited by happyelf; 06-10-2005 at 06:05 AM.

 
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Old 06-10-2005, 06:40 PM   #3
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Re: So Scared about my Brother....

Quote:
Originally Posted by deejavu
Hi everyone,

My baby brother had his left eye removed due to melanoma and he is waiting for his prosthetic eye.

During his wait, Sloan-Kettering keeps checking him and I found out this morning that they told him he has "spots" on his liver and kidneys plus an Aaneurysm that he was told was a 4.

He is so young and I am terrified for him. He doesn't want to talk about it right now and I feel so helpless. He is extremely depressed and I hope his depression passes.

I can't stop crying as I love my brother so much.

Does anyone have any idea what these Spots mean?

I would appreciate any information you could give me.

Thanks,
Denise
I am so sorry that your brother and you and your family have to go through this terrible time. My baby brother passed away from melanoma in 1992 at the age of 34. My advice is to:

1. Get with an oncologist that is a specialist in melanoma (usually found in your larger teaching hospitals. If there is not a large teaching hospital, or at the very least an oncologist locally with a great reputation as an aggressive dr. when dealing with melanoma, then by all means travel to a hospital that will provide that type of treatment!

2. Do your own research regarding experimental programs out there (National Institue of Health, etc.) and work with your dr. to get your brother in one...or more of those programs! What sometime happens, is you find out about a program that shows great success, but your brother does not qualify because he no longer fits the protocol (i.e. he has a second site, or one too many surgeries, etc.). That is EXTREMLY frustrating, as you can imagine

3. Be proactive...make sure he (or a significant other) checks his body VERY FREQUENTLY (at least weekly) between appointments with his drs. Trust me...melanoma can appear again out of nowhere!! My brother had one site show up as a small lump in his chest wall, it had a slight bluish tinge under the skin.......very strange, but melanoma.

4. Encourage your brother to vent, cry and ask why me (it is allowed) and then to prepare to do battle!!! It was very hard for my brother to accept or even talk about his cancer, but when he saw the research I was doing, and the knowledge I had gained about melanoma, he really felt like we were in the battle together and it drew us even closer.

I am sorry this post is so long.......and I know I have given you a lot of things to consider, but.........along with my brother I have two friends who have had melanoma for at least 12 years (one was 13 when she was diagnosed) and they are doing wonderfully . I will pray that your brother does equally as well! Take care and let us know how everything is going.

 
Old 06-11-2005, 05:20 PM   #4
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deejavu HB User
Re: So Scared about my Brother....

Dear Happyelf and MDA,

I can't thank you enough for your support. My brother is doing much better and has a very positive attitude now. He goes to more than 1 hospital every week (one doctor is still creating his prostetic eye), another is a therapist, another is an oncologist, and he does get constant MRI's and/or Cat Scans.

We are finally calming down and my brother learned that after each test, he must pester his doctors to give him the results right away, not wait for the doctor to call him.

The doctor that saw these "spots" on his liver and kidney saw them 2 months ago and never told my brother and that's what made my brother so angry (hey, I am angry at that too!).

Anyway, the good news for now is that he had another test and his "spots" didn't change at all and it's possible my brother always had these spots and that they can be "normal" for him. But he will keep getting checked as we are all aware that these spots can change any day.

My brother did qualify for some type of "Program" where he gets injections for his melanoma problems which is good (I don't know all the details of this program but I do know that my sister-in-law checked it out thoroughly). All this is taking place in New York City where he lives.

His wife is very good at hounding his doctors for information and she has so many problems with her own family that I guess this one escaped her. She had to go to Europe this past week and my brother told me that she has been crying all week. She will be back home tomorrow and I know she can be really tough with these doctors as she loves my brother so much.

MDR, I am so sorry about your baby brother, that is too young... My baby brother is 44 years old and he is my best friend.

He did finally vent his anger and all his thoughts which was healthy for him. He just needed a couple of days to put his thoughts and feelings together.

You have given me many thoughts and I thank you for that. I do believe that melanoma can pop up anywhere at any time.

I will do my own research on melanoma as I have learned that one can't have enough knowledge about any disease.

Thanks again and I will keep you updated,
Denise

 
Old 06-11-2005, 07:02 PM   #5
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Re: So Scared about my Brother....

Thank you for the update. I am so happy that your brother is doing better! It sounds like you guys are doing all the right stuff.......and you are so lucky to be in/close to NYC!!! So many of the experimental programs that that my brother and I looked into were located in or very near NYC. Take care and keep us posted!

 
Old 06-19-2005, 02:21 PM   #6
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deejavu HB User
Re: So Scared about my Brother....

Hi MDA,

Well, I'm scared again for my brother as one of his doctors told him that he does have some cancer on one of his kidneys, so they are going to operate.

What really upset me today is that my older sister (we don't talk as that's a long story), called my fragile Mom who is 79 and told my Mom that my brother probably has Liver Cancer too and that he will die.

I am shocked that my sister told this to my Mom as she caused Mom to become more upset and Mom can't handle that. My brother has "not" been told he has cancer of his liver, so I don't understand my sister. Mom is going in for a hip replacement operation and needs to stay calm.

Anyway, my brother had a Pet Scan done this week and we will find out the results on Tuesday. All I can do is pray for him and keep my Mom as calm as I can.

Any thoughts would be appreciated.

Denise

Last edited by deejavu; 06-19-2005 at 02:22 PM.

 
Old 06-19-2005, 08:37 PM   #7
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Re: So Scared about my Brother....

Quote:
Originally Posted by deejavu
Hi MDA,

Well, I'm scared again for my brother as one of his doctors told him that he does have some cancer on one of his kidneys, so they are going to operate.

What really upset me today is that my older sister (we don't talk as that's a long story), called my fragile Mom who is 79 and told my Mom that my brother probably has Liver Cancer too and that he will die.

I am shocked that my sister told this to my Mom as she caused Mom to become more upset and Mom can't handle that. My brother has "not" been told he has cancer of his liver, so I don't understand my sister. Mom is going in for a hip replacement operation and needs to stay calm.

Anyway, my brother had a Pet Scan done this week and we will find out the results on Tuesday. All I can do is pray for him and keep my Mom as calm as I can.

Any thoughts would be appreciated.

Denise
Oh Denise, I am so sorry that your brother has had a setback . I also agree that your mom, especially considering her age and impending surgery, does not need to be told anymore than facts (i.e. upcoming surgery dates, beginning chemotherapy, etc.). I hope your sister will be able to understand that this is her son, and regardless of the love and concern that a sister has for a brother, a mom's love, concern, worry etc. is off the charts!!

How is your brother and his family doing emotionally? I am sure this is all so overwhelming right now....but remember to try to stay strong for him. Is he in any immunotherapy programs right now? Please let me know how the PET scan turns out. I am sure that with those results, a good plan will be put in place by all the Drs working together. Do not give up hope!!! Please let us know what happens on Tuesday and above all else......Take care!

 
Old 06-21-2005, 05:03 PM   #8
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deejavu HB User
Re: So Scared about my Brother....

Hi MDA,

Thanks for your support and advice, it really helps. Well, my sis-in-law (my brother's wife) called my Mom and my brother is scheduled to be operated on his kidney July 7.

The doctor said that all this came from his melanoma in the eye which must be rare as I can't believe it.

My brother also has an aneurysm surrounding his heart and my sister-in-law didn't want to talk about his liver.

I don't understand why they don't operate on the aneurysm first and then remove part of his kidney.

I wonder if my sister-in-law would take offense if I asked her for the doctor's name and telephone number as this is my baby brother and I want to know all the facts.

I have been praying for my brother, he is such an angel with a beautiful heart. Not only is he my baby brother, he is my best friend.

Any thoughts or advice would truly be appreciated,
Denise

 
Old 08-09-2005, 10:52 AM   #9
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Re: So Scared about my Brother....

Denise.......I am sorry that I have not been on this board lately, but I was wondering how your brother is doing? Please know that I am thinking and praying for you guys. Take care!!!!!

 
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