Newly diagnosed with malignant Melonoma and unrelated Prostate cancer. Scared about delays in treatm
Comments
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Hello,reading your story I feel your fustration don't know what part of the country you live in but I can tell you have to do alot of looking for the right doctor and the right facility.I know melanoma and prostate is nothing to fool around with.My wife is stage 4 melanoma since 05/09.Went to Moffitt in Tampa to Dr. Jeffrey Weber ( one of the best )she went through bio-chemo for 6 months and is now in a clinical trial taking ipilimumab and is doing great. She has gained all her weight back is feeling great doesn't take pain meds.I fairly sure they use that drug for prostate treatment also.I know it is fustrating because things do move slowly at times.My wife had to wait a period of time and go through gene testing before she could start her trial.Maybe you should ask your doctors and look up some info.If you don't get the answers you like and or do't feel confident in your doctors start looking around and do what ever you have to do.It's your life.TAKE CARE !!!!!!!!!0
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Thanks for your response, atPlucas said:Hello,reading your story I feel your fustration don't know what part of the country you live in but I can tell you have to do alot of looking for the right doctor and the right facility.I know melanoma and prostate is nothing to fool around with.My wife is stage 4 melanoma since 05/09.Went to Moffitt in Tampa to Dr. Jeffrey Weber ( one of the best )she went through bio-chemo for 6 months and is now in a clinical trial taking ipilimumab and is doing great. She has gained all her weight back is feeling great doesn't take pain meds.I fairly sure they use that drug for prostate treatment also.I know it is fustrating because things do move slowly at times.My wife had to wait a period of time and go through gene testing before she could start her trial.Maybe you should ask your doctors and look up some info.If you don't get the answers you like and or do't feel confident in your doctors start looking around and do what ever you have to do.It's your life.TAKE CARE !!!!!!!!!
Thanks for your response, at least I know someone is out there listening. I am going to Winship Cancer Inst. at Emory Hospital in Atlanta and supposed to have the best Melonoma Dr. there. They just seem so overloaded with patients that any one person gets lost in the shuffle. I have medical issues from my past that are causing some of my problems. In 1990 I had a cerabral aneurysm that ruptured at home and now have a clip that keeps me from having MRI. I know it is a clip that is made out of Titanium but have no proof and can't get the information into the right hands. I have had at least 3 MRI's since then but it takes an act of congress before they will put me near their machines. Just called Dr in Atlanta to see if a CT would be sufficient but Dr. is in surgery all day so I won't know until tomorrow. I have to be up there Thursday morning for preop so I'm running out of time and patience. Scared if they don't have a scan they won't do the surgery and I'm back to another 2 or 3 week wait. I am extremely lucky to have gotten this far but I am not ready to just give up. Makes me want to grab a Dr by his ears and get his attention so he knows I'm deadly serious. I'm just praying that if and when I do get surgery that they get all of the cancer out of me. I do have lymph involvement so it is not likely but I can sure hope they do. Again thanks for your response, it made me feel a little better, and I hope and pray for you dear wife.0 -
Dr WeberPlucas said:Hello,reading your story I feel your fustration don't know what part of the country you live in but I can tell you have to do alot of looking for the right doctor and the right facility.I know melanoma and prostate is nothing to fool around with.My wife is stage 4 melanoma since 05/09.Went to Moffitt in Tampa to Dr. Jeffrey Weber ( one of the best )she went through bio-chemo for 6 months and is now in a clinical trial taking ipilimumab and is doing great. She has gained all her weight back is feeling great doesn't take pain meds.I fairly sure they use that drug for prostate treatment also.I know it is fustrating because things do move slowly at times.My wife had to wait a period of time and go through gene testing before she could start her trial.Maybe you should ask your doctors and look up some info.If you don't get the answers you like and or do't feel confident in your doctors start looking around and do what ever you have to do.It's your life.TAKE CARE !!!!!!!!!
Hi, I just wanted to say that my mom in law is about to start the vaccine trial at moffit with Dr Weber. She is stage 4 and has quickly spreading melanoma. We are hopeful this trial will give her some time. Moffit is a wonderful hospital.0 -
prostate and malinoma
I too had prostate cancer along with malinoma in Dec of 2009. Had the prostate removed and the malinoma on the neck which was just on the skin although deep. They thought all was well with the malinoma so moved on in life although always concerned. In Feb. 2010 the malinoma had come back with a node on my neck. went through radiation and once again they thought things were well. In Sept i had another node appear where they had done the removal and radiaton treatment. Now it has metastised and taking off on a dead run. A node on my chest upper right has appeard so Dec 15, 2010 (tomorrow) i go for biopsy. The Dr had called back and said he wanted to be more thourough even though the odds were awfully low that it could be related to the prostate but wanted to just make sure. I had just done a scan and found out about the spreading and was offered two medication options at this time.
Temozolomide (temodal)
or
Interluken 2
Was making the decision on the Temozolomide when he then called and wanted to just make sure so it is on hold for the moment.
I have had fantastic Drs. the decision on which course to take is difficult at best. Seems every location in the country has different options and therapies. Unfortunatly they seem to be long shots at best. Not to sound morbid trust me, it just seems to be the character of Malinoma. I am in stage 4 currently and who knows where from here.
So keep chin up along with a stiff upper lip and move forward.
Hopefully making the correct decisongs with what information is at hand.
I hope things have gone well and your treatment is working.
Along with a stiff upper lip a lot of Prayer can be of comfort and relaxation as well.
Praying for the best for you and all others in this situation of life.
and for comofort for your family through these trying and difficult times.0 -
Melamomabeaver1 said:prostate and malinoma
I too had prostate cancer along with malinoma in Dec of 2009. Had the prostate removed and the malinoma on the neck which was just on the skin although deep. They thought all was well with the malinoma so moved on in life although always concerned. In Feb. 2010 the malinoma had come back with a node on my neck. went through radiation and once again they thought things were well. In Sept i had another node appear where they had done the removal and radiaton treatment. Now it has metastised and taking off on a dead run. A node on my chest upper right has appeard so Dec 15, 2010 (tomorrow) i go for biopsy. The Dr had called back and said he wanted to be more thourough even though the odds were awfully low that it could be related to the prostate but wanted to just make sure. I had just done a scan and found out about the spreading and was offered two medication options at this time.
Temozolomide (temodal)
or
Interluken 2
Was making the decision on the Temozolomide when he then called and wanted to just make sure so it is on hold for the moment.
I have had fantastic Drs. the decision on which course to take is difficult at best. Seems every location in the country has different options and therapies. Unfortunatly they seem to be long shots at best. Not to sound morbid trust me, it just seems to be the character of Malinoma. I am in stage 4 currently and who knows where from here.
So keep chin up along with a stiff upper lip and move forward.
Hopefully making the correct decisongs with what information is at hand.
I hope things have gone well and your treatment is working.
Along with a stiff upper lip a lot of Prayer can be of comfort and relaxation as well.
Praying for the best for you and all others in this situation of life.
and for comofort for your family through these trying and difficult times.
My prayers are with you. I'm a 11 year stage 3 Melanoma Cancer Survivor. Years 97 & 99. I did a clinical trial in California. Interluken was part of my treatment. There is a lot of options out there. You have to trust in your Doctor. I hope all goes well for you. Keep posting, talking always helps. God Bless.0 -
Dr.WeberPlucas said:Hello,reading your story I feel your fustration don't know what part of the country you live in but I can tell you have to do alot of looking for the right doctor and the right facility.I know melanoma and prostate is nothing to fool around with.My wife is stage 4 melanoma since 05/09.Went to Moffitt in Tampa to Dr. Jeffrey Weber ( one of the best )she went through bio-chemo for 6 months and is now in a clinical trial taking ipilimumab and is doing great. She has gained all her weight back is feeling great doesn't take pain meds.I fairly sure they use that drug for prostate treatment also.I know it is fustrating because things do move slowly at times.My wife had to wait a period of time and go through gene testing before she could start her trial.Maybe you should ask your doctors and look up some info.If you don't get the answers you like and or do't feel confident in your doctors start looking around and do what ever you have to do.It's your life.TAKE CARE !!!!!!!!!
I also did a clinical trial with Dr.Weber when he was in California at the Norris Cancer Center. I had stage 3 Melanoma that has been almost 11 years. Thank God no recurrence. I pray for all the Cancer patients and there families.0
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