One patient with glioblastoma still alive nine years later
by Maria7310 on Sat May 12, 2007 12:00 AM
by Prayerful on Sun May 13, 2007 12:00 AM
by Caseysummerwind on Thu May 17, 2007 12:00 AM
My Mom was diagnosed with Stage IV metastic melanoma in Nov 06 and we lost her March 3. Don't wait - plan your trip as soon as possible. The combination of chemo/radiation takes it's toll, plus the meds to combat the symptoms. You may notice Mom wanting to sleep more, and yes the appetite diminishes rapidly on chemo. My Mom's melanoma also went to the head, to the brain.
Take heart and spend as much time as you can with your Mom. Of course the daily meds, dtr appointments and trying to come up with new food combinations that Mom may like can be exhausting. Get her to the best doctors for a second opinion, either Sloan Kettering in NY or MD Anderson in Texas if possible. We did that, and Mom's local oncologist coordinated with the specialists.
But, it's imporant to remember that this illness does not touch your Mom's soul. It's her body that's breaking down, but the Mom you love will never change. Take time and enjoy trips, conversations and memories with her. It could be as simple as taking Mom for a long ride in the car and just talking. I promise these simple moments will be profound in the future. Also, take care of you.
God Bless and may he guide you during the difficult time. You're in my prayers......
by Troeste on Sun May 27, 2007 12:00 AM
by Needguidance on Wed Jun 27, 2007 12:00 AM
by Sam673 on Fri Jun 29, 2007 12:00 AM
To those of you who have lost loved ones to melanoma, I am so incredibly sorry for your loss. But, Maria, Stage IV melanoma doesn't ALWAYS equal a death sentence. A close family friend was diagnosed with Stage IV melanoma last year, and she went through a few rounds of biochemotherapy, and her cancer is now in remission.
No, it's not that easy (yeah right, like biochemo is really easy!) for everyone with Stage IV melanoma. My Dad was diagnosed with Stage IV melanoma in October 06, and he's still fighting. He has mets pretty much everywhere in his body. You name an organ, he's got mets there. Three rounds of biochemo kept his cancer from spreading and growing, but it was too hard on his body, so the doctors took him off of it. He has since tried several other combinations of chemo, developed some brain mets, had stereotactic radiosurgery for them, and is now going through another round of chemo (dactimycin, carmusine, and hydroxyurea), which has been the first chemo he's taken that's been effective in shrinking some of his tumors (x-ray results only - he isn't due for another full scan for another few weeks).
I don't know why doctors give the 6-12 month prognosis, when they really have NO idea how a patient will react to the treatments given! Some people get stage iv melanoma, and they don't make it a month. Others live for years (we know a guy who was diagnosed with Stage IV melanoma over 15 years ago!).
To answer your question (based only on what I know of this disease), if your mom is going through chemo right now, chances are, she won't WANT to go anywhere. I'd advise bringing the family to her (but be careful about sick family members - especially kids - and ask the doctor about babies and children who have been vaccinated within the last 6 weeks - live vaccines are contagious and very dangerous to someone on chemo with no immune system!).
If you haven't yet, make time to have a conversation with your mom and get some feedback from her on what she wants. Hope this helps.
by lovelyre on Tue May 21, 2013 12:50 PM
Thank you for all of your thoughts and comments. My mother was diagnosed with melanoma in her brain a month ago. They took out most of it except for where it was affecting her speech. The tumor was the size of an egg. She also has 3 lesions in her lungs. After surgery her wound was seeping so they took her back in and found out that she has menangitis. They cultured the bacteria and found out that she has a brain infection and has to stay on intervenious antibiotics for four weeks so she is still in the hospital. Just two days ago she had very bad diahareeha and is now being tested for CDIF. The doctors say she is responding well to the antibiotics...she could not comprehend very much before and was very agitated. Now she is calmer but sleeps all the times. She hasn't been out of bed for about a week until yesterday when they started intensive physical therapy. The doctor told us the same prognosis...3 to 6 months. I however am not that optimisitic. She just seems too sick to me. My family however seems to me to be in denial. My uncle just texted me and told me that love and prayers could have her living for many more years. She is 76 years old. I'm tired of either listening to people who seem to be in denial or not being told the entire truth. Does anyone here really feel she could go into remission? She qualified for the gamma knife before the infection but now can not get it until she is done with her antibiotics so I don't know if she will qualify then. They haven't even talked chemo yet and they are not addressing her lungs because they said the tumor in the brain took priority. I'm so confused, scared and truthfully an emotional wreck. But I want and seek the truth. Please any feed back would help me immensly. Thank you
by dellriodell on Fri Jun 14, 2013 11:31 PM
I was diagnosed with stage 4 with brain mets and lung mets. I was on Zelboraf for the last 12 months. Just had my second craniotomy as a tumor caused a tumor to bleed. Had Gamma knife radiation yesterday. Switching to rervoy next week. The thing with melanoma as that the new treatments change your prognosis almost daily. Most statistics are based on 5 or 10 years and the latest drugs are newer than that... So I swim, ride horses, and just keep on living. I feel good and I enjoy my life. Will this kill me, who knows? If the meantime, I will keep fighting this and I will keep living...
by slbbw on Wed Jul 10, 2013 03:31 PM
Hopefully this is not derailing the post. For those of you who lost loved ones, can you please give me an idea of what the progression was like. I am trying to be optimistic for my mom's recent dx but I would also liek to know what to expect. I am planning to try and visit as much as possible, but I really do want to be prepared to deal with her decline. feel free to answer me here or privately.
by Rcount79 on Sat May 31, 2014 07:18 AM
link below is about a little girl on CBD oil and chemo still i beilieve. but the link above explains why CBD doesnt kill cancer. there is a great statement from the american cancer socity on the little girls video tho.
big pharma/ healthcare system/ National cancer socity/ American cancer socity dont want to talk about it because they cant patent the plant. And dont seem to want to put the money into trials because of lack of patents so I see them trying to make synthetics soon so they can make money off of it. meanwhile millions die for no reason. from the options they try to give to us that are poisons to our body good and bad cells.
look into the the RSO
this link here basicly tells you that the things they try to put you on for melanoma in the brain dont cure anything just slow the growth while its working if it works.
I am also a melanoma in brain cancer patient looking for options because the only they they have for me is Immunotherapies (ipilimumab) link above isnt promising on this and the side effects I cant agree with.
So I myself am looking into the RSO (rick simpson oil) and have even purchased the 10$ebook. Hes using the money from this Ebook to get it translated into as many languages as he can as fast as he can. From all the things I have read it seems to have the most potential with least side affects and it's my life at stake here.
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