About Karen Brawner Expertise I will answer your questions regarding cancerous brain tumors and benign train tumors. I will help your with the research of your condition so that you can help yourself in making a quality decision about your treatment.
Experience My husband had metastasis from malignant melanoma to the brain (3 tumors) and a friend of mine suffers from a benign brain tumor which she refuses to have surgery on. I can only make suggestions as to what you need to talk to your doctor about.
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My daughter had a brain tumor removed on Tuesday the tests on Thur showed she had malignant melanoma stage IV...they have done a CT scan and it showed perhaps a small spot on the lung she will have a PET scan soon and radiation on the brain tumor area...what questions do I ask and what hope can I give my daughter as I understand how traumatic this is and she still does not..
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Dear Kathi, I am so very sorry to hear about your daughter and what will be the greatest battle of her life and yours and the rest of her family and friends....
Since the melanoma has already spread to the brain, radiation is the only treatment that will help and even then, this may end up being only pallitive treatment since the brain can only have a certain amount of radiation before good brain cells start to be destroyed.... It would not surprise me that the small spot you say is PERHAPS melanoma on her lung, that it IS melanoma cancer....
Melanoma is the most rapid spreading cancer there is and since it is in the lung and in the brain, it traveling rampant through her blood stream and lymphatic system... The bad part about PET scans and CT-scans is that they will only pick-up tumors that have already formed and can not pin-point the actual cancer cells in the blood....
Since I believe in being honest with people and giving them researched and know facts (which often doctors will NOT do), I have to tell your that the prognosis for your daughter is very poor.... You did not tell me here if this malignant melanoma is caused by cutaneous melanoma (melanoma skin cancer) or caused by mucosal lentiginous melanoma (which develope in the respiratory track, gastro track like the esophagus and intestines etc...)..... Most patients with advanced stage IV malignant melanoma usually only live 6-9 months after diagnosis is made.... That was the life span of my husband who was officially diagnosed with malignant melanoma in April 1997 and he also had melanoma in the brain and in the right lung..... He died Christmas Eve 1997 and all medical research web sites will state malignant melanoma has a survival time of 6-9 months, some will say 6-11 months.....
As to what questions that you need to ask here are a few and be sure that the doctor or Oncologist which ever your appointment is with, tell you the TRUTH and when you see the doctor and you get your answers, let me know what he says..
Questions:
1. What is the next step? (chemotherapy, immunotherapy etc)
2. What EXACT chemotherapy drugs or immunotherapy drugs be used and what will the side effects be?
3. Will either of these treatments STOP the melanoma? If so, what is the CURE rate percentage and what are the chances for my daughter?
4. How long will the treatments be given and how often..
5. If there are NO TREATMENTS available, how long will my daughter have to live and what can we expect?
I could go on and on about this, but I will not at this point because I prefer that you ask me questions that you really want answers to instead of me going through the entire process of life and death with melanoma... As for your daughter, she needs to get a grip on reality RIGHT NOW.... I do not know her age or if she is married with husband and children, but she may want to start making her peace with everyone and spending as much GOOD time as she can with them and the rest of the family.... Denial is the WORST thing a person can have who is diagnosed with Malignant Melanoma Stage IV as I can witness with another family who has written me here and her husband refused to admit he had cancer and denied how he felt etc and within 2 months he was in the hospital dying and wondering WHY....
Here are a couple of web sites that you and your daughter and anyone else needs to read....
did they use the Proleukin immunotherapy with your husband?? It looks promising or do you think I am being too naive??
www.emedicine.com/med/topic/1386.htm
www.cancernetwork.com/textbook/morev32.htm
If you can tell me if this melanoma was caused by a SKIN cancer melanoma or a mucosal lentiginous melanoma, I may be able to supply you with more web sites or if you have more specific questions or worries, I am here for you to talk to or ask questions of.... This is definately going to be every parents worst nightmare for you....
I am here anytime you need to send me info or just talk... I try to get on at least 2 times per day..... Karen
Answer Dear Kathi, No, Proleukin was NOT available until January 1998 and since my husband died in December 1997, it was not yet approved by the FDA and therefore not available.... My husband was treated with alpha-interferon and interleukin-2, but these did nothing....
There is much research and clinical trials still going on about Proleukin even to the point that there are clinical trials going on where the Proleukin is being injected directly into the cancerous tumor instead of just total body injection like Proleukin IV therapy or Proleukin injection under the skin... There is also research that shows a better response rate of Proleukin if given with chemotherapy drugs and Interferon....
I must tell you that the percentages are more impressive for extending length of life by months, than by years and that most clinical trial reports use only a small amount of people in their trials (270-300) and with all the people in the world with malignant melanoma, this is just a drop in the bucket.... Also, in these clinical trial reports, it does not give the information about where the cancer was in these patients... I went to the Chiron web site and the person who was cured of melanoma only had melanoma in his lymph nodes of which 70 lymph nodes were removed... Your daughter's melanoma has already spread to her brain and lung, which is more progressive than most of the patients in these clinical trials.... Infact at the Chiron web site, this is the ONLY patient that they have a profile on, which seems strange to me.... Also, Chiron's own web site states that people with malignant melanoma that had metastasized to the brain where NOT INCLUDED in their clinical trial, so this tells me that they already knew that Proleukin would not work for patients with melanoma mets to the brain and they did not want this to affect the trial reports and lower their responce rates... This is why I mean you really MUST research and do your homework... I will give you this web site below also... Besure to read all the information and pay close attention to the part entitled "Clinical Experience"...
I also want to tell you that if your daughter's doctor wants to try ANY treatment (chemotherapy, immunotherapy, radiation etc) it is in your best interest to get the exact NAMES of the drugs being used, the AMOUNT of the doseage(s), how often the drug will be given and how it will be administered.... This is VERY IMPORTANT because often doctors do NOT give the drugs in the way the clinical trials report it should be given and when that happens, the patient might as well take a sugar pill.... Be sure that you have the MOST qualified oncologist (cancer drug doctor) helping your daughter... Do research on where the most promising treatment is being given and either send her there or DEMAND that your local Oncologist use the same treatments with the same combined drugs etc.....
I have found a couple of web sites again regarding Proleukin and the percentages... As the web sites say, each person may or may not responde as well to the drug treatment or multi-drug treatment as was indicated in the clinical trial, but the information is there and ofcourse the treatment decision verses side-effects are your daughter's and your family.... With any treatment, she and you will know if she can withstand the side-effects, how it is being handled by her body and when to proceed and when to stop...
I do not want you to get the wrong idea from me here... I feel that EVERY cancer patient and their family should TRY anything available as long as they can withstand the side-effects of the treatment and their bodies are holding up under the treatment.... So by all means, try anything and every thing available as your doctor feels will prolong life.
If you would please answer my question about if her melanoma is from a skin cancer or from mucosal lentiginous and also be sure to get back to me once you have seen the Oncologist and he/she determines the drugs that will used in your daughter's treatment.... In the mean time, you and your daughter need to get educated about all the drugs available to her, use of chemotherapy and immunotherapy combinations etc, and side-effects..... Your doctor also needs to be sure that your daughter's overall health can withstand the treatments and she must also be emotionally ready for what she is about to undergo... Please also tell me her age....
