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ballcap8
New User
Joined: 29 Sep 2008
Posts: 8
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 Posted: Sat Oct 04, 2008 5:12 pm Post subject: ghost melanoma |
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This is my wifes storie
About the first of July she started to have slight pains in her lower back, we just brushed them off as normal. Just befor school started we decided to take the kids on one last trip befor school started. We went to visit my sister at the beach, and after two days the pains continued get get worse. I took her to the emergency room. She was treated for a urinary tract infection and sent home. The pains at this time became allmost unbearable and she started to loose the use of her left leg, so we took her back to the emergency room. We were told she would not be released untill they knew what was causing the pain and ordered an MRI of her spine.
MRI came back showing lesions on the lower spine and fracture of the L4. the tumor had also effected the nerves for the left leg. She was admitted to the hospital and they started to run test to find the original tumor. after Ct of the abdomin and chest they found an grapefruit sized tumor in her upper right lung and enlarged lymph nodes in the chest. A byopsie was done on a lesion on the spine and it came back melanoma. They ordered a PET scan to find the stating spot since she has never had a spot removed, but it came back clean from head to toe.
They started her on radiation for the spine to ease the pain, and now we are waiting to go to NCI to see if she will be accepted for a trial.
We are new to all of this and it is all happening so fast!!! We are trying to keep up our spirits as much as possible, and for the most part we do. Our kids are doing better that I thought they would!
Any ideas on treatments out there would be greatly appreciated, as there are so many its hard to think about what is the best. Sorry this turned out so long. |
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tonester
Experienced user
Joined: 03 Mar 2008
Posts: 83
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| Posted: Sat Oct 04, 2008 6:48 pm Post subject: Re: ghost melanoma |
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Hey Ballcap,
Welcome.
Very sorry to here about your wifes melanoma.
I'm so glad you posted about her story.
I've been having trouble with use of my left leg as well.
Definately have some questions for my doctors.
As far as her treatments go, take it one step at a time.
Stay positive, and hang in there!!!!!!
Tony
_________________
****Kick'n Cancers Arse Since April 2007****
You can check out "My Story" at the link below.
http://cancerforums.net/viewtopic.php?t=9083 |
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ballcap8
New User
Joined: 29 Sep 2008
Posts: 8
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| Posted: Fri Oct 17, 2008 4:54 pm Post subject: Re: ghost melanoma |
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| I need some info from everyone, we returned from NCI after being turned down for any tratments, my wifes blood counts were to low to treat. when we returned home I had to put her back in the hospital, she lost the feeling from mid chest down and lost the use of her legs. MRI showed two tumors at mid chest commpressing the spinal cord. started her back on steroids and radiation. her Onc. started her on temodar/thlidamide treatment because of the speed she is progressing at. the tumors were so small that they allmost missed them on a scan three weeks befor! does anyone know anything about this treatment and what kind of results it gets? they tell us if this wont slow it down, she only has a few months left. i guess i just am having a hard time not knowing anything about these drugs. |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5614
Location: Tennessee
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HaoleBoy
Senior User
Joined: 19 Aug 2008
Posts: 108
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| Posted: Sat Oct 18, 2008 12:30 am Post subject: Re: ghost melanoma |
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I'm terribly sorry to hear about your wife's diagnosis.... I can't comment on the drugs because I'm Stage II right now (and forever I pray)... but I recommend a couple of resources which will answer your questions....
First, the Melanoma Patients Information Page (1st link) below is full of survivors battling Stage III and IV melanoma and you will find people there who are actively being treated for mets to the spine and lung (same as your wife).....They can provide a wealth of information on possible treatments as they have about experienced everything as a group it seems....
The 2nd link is Catherine Poole's website. Catherine is a 20 year melanoma survivor and is also a melanoma patient advocate. Her site is professionally moderated and Catherine has access to a melanoma clinic and scientific board at Univ of Pennsylvannia Med Center (one of the leading melanoma research and treatment centers in the country).... Catherine also has a toll free number you may want to call ..... she is very responsive and a very caring person....that number is
866-463-6663
Don't give up hope ...... Prayers to your wife, you and your entire family...
HaoleBoy
Stage IIA melanoma
http://mpip.org/bb/bbindex.html
http://forum.melanomaintl.org/toastforums/toast.asp |
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ballcap8
New User
Joined: 29 Sep 2008
Posts: 8
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| Posted: Sun Jan 18, 2009 6:01 pm Post subject: Re: ghost melanoma |
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| Well we had the scans after her first run with the thalidomide and temozolomide. The scan showed a reduction of the tumor in her lung by 1 cm, but called the lesions in her spin as more destructive. With mixed feelings about the results they started her on another round of the same drugs. Around the first of December she started to have trouble breathing so back to the ER. Chest x-rays showed nodules throughout the Plura, and fluid around the right lung, at that time they drained 2 liters off and told her she still had a lot left but didn’t feel comfortable removing anymore. The next day they did surgery to scrub the Plura and scar it to stop the fluids, and biopsy the nodules. After the surgery the doctor said her removed an additional 2 and a half liters of fluid and the nodules were consistent with metastasis. With the new news, they decided to try MD Anderson to see if she could get the IL-2 treatment but was turned down because of the fluid on the lung problems. So next option was to continue the thalidomide and temozolomide daily and add Taxol once a week. Biopsy came back on the nodules positive for melanoma. Not what I wanted to hear. Christmas night I had to take her back to the ER for another round of not being able to breath, once again they had to remove fluid from her lung, this time 750 ml from the left lung. This really worries me! Does anyone have any ideas of what we need to look out for next? What problems can this lead to? |
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ballcap8
New User
Joined: 29 Sep 2008
Posts: 8
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| Posted: Tue Apr 21, 2009 10:24 am Post subject: Re: ghost melanoma |
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| I am sorry to say that my wife Jennifer lost her battle with cancer after an unbelievable fight on April 3 2009. She proved to me what a true hero is. From the very beginning she worried more about how we (myself and our three girls) were. Right up to her last days, she gave me comfort and asked how I was doing. Such a beautiful woman! I feel like my heart and soul were taken with her that night. She will always be with me in my heart and mind. Rest in peace my love! |
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MelloMix
New User
Joined: 05 May 2009
Posts: 4
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| Posted: Tue May 05, 2009 4:47 pm Post subject: Re: ghost melanoma |
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Ballcap
I have just read your posts about your dear wife.
What a terrible disease this is. Your wife was very brave.
I am so sorry.
Mellomix |
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