The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

I need hope

Forums General Melanoma Community I need hope

  • Post
    Manubuzzi
    Participant

     

     

    Greetings to all,
     
    I wanted to know the general and overall opinion on the steps that my family is taking to fight against my mother's illness.  Her first symptom appeared en January of this year, it was limited mobility and paralysis of her arm and leg.  After some tests, she had an operation (2/24) and a tumor was extracted from her brain. Biopsy Diagnosis: Melanoma.  PET Scan results (3/29):  2 brain tumors, 1 tumor in the liver, and 1 adrenal gland.  Since the operation, my mother has been very weak and unable to walk.  She had lost her ability to speak, but recuperated it quickly.  Now, for the last few days, she is starting to again have difficulties with her speech and it's getting worse.  We aren't sure of the real cause of this new symptom, given that it has been 40 days since the operation and we hadn't seen any type of relapse or problems until recently.  Now, the doctor has tripled the Corticoid dosage to see if it helps improve her speech.  
     
    My mother is afraid, and her five children, myself included, are terrified.  Dr. Silva, the best specialist in Argentina, with whom we had a consultation yesterday (4/4) said that our first step is Temodar and radiation.  Then, depending on the results, we could choose between 2 treatments for the immune system (the names of which I do not yet have.)  I am writing today to hear some feedback of personal experiences with Temodar and radiation, the side-effects, the effectiveness, the dosages, etc.  
     
    I can't seem to find the words to gove her strength or comfort.  She had been a completely healthy person until 3 months ago.  We were not prepared in the slightest for a situation like this.  We are devastated and desperate.  Any comment, word of wisdom, advice, or help, would be much appreciated.
     
    Thank you,
     
    Manuel
    Son of patient 
    Loading spinner
Viewing 13 reply threads
  • Replies
      TAC
      Participant

      Sorry you and your family are in this situation with your mother. If the most recent scan showed 2 tumors in her brain plus the other areas, liver and adrenals, it would seem that the doctors could zap the 2 brain tumors with a gamma knife or something similar (bean of radiation). The other tumors could be attack via chemo of aome type. Not knowing what is available in your country makes it difficult to suggest something. Maybe some others will reply. It would seem to me that time is of the essence so something must be done soon to arrest and eliminate the brain tumors. Perhaps they are the source of the mental difficulties, etc. Best wishes to you.

      Loading spinner
        Manubuzzi
        Participant

        I really appreciate your words and your time. I don`t know exactly what is available in Argentina, but these days I am learning so much!

        Best wishes to you and good luck!

        Manu

         

        Loading spinner
        Manubuzzi
        Participant

        I really appreciate your words and your time. I don`t know exactly what is available in Argentina, but these days I am learning so much!

        Best wishes to you and good luck!

        Manu

         

        Loading spinner
      TAC
      Participant

      Sorry you and your family are in this situation with your mother. If the most recent scan showed 2 tumors in her brain plus the other areas, liver and adrenals, it would seem that the doctors could zap the 2 brain tumors with a gamma knife or something similar (bean of radiation). The other tumors could be attack via chemo of aome type. Not knowing what is available in your country makes it difficult to suggest something. Maybe some others will reply. It would seem to me that time is of the essence so something must be done soon to arrest and eliminate the brain tumors. Perhaps they are the source of the mental difficulties, etc. Best wishes to you.

      Loading spinner
      dian in spokane
      Participant

      Hi Manuel,

      I'm glad to see you moved this post over here to the main board, where you are more likely to get input from people with the same kinds of experience. I see by your response over on the off topic board that you have two teenaged sisters, and I am guessing you are also a young man. This makes me think your mother might not be that old herself, which might be encouraging for her chances for recovery.

      I hope that the doctors can get those brain tumors taken care of quickly, and that your mother can recover quickly.

      I'm glad you found your way here,

       

      Dian

      Loading spinner
        Manubuzzi
        Participant

         

        Dian
         
        My mom is 45 years old, and I am 24. We live in Tres Arroyos, Buenos Aires province, Argentina. Until January we were living a fantastic life, really. Sometimes I thought about how lucky I was, and now I am undestanding how life works.
         
        I hope God will hear your words.
         
        Thank you again
        Loading spinner
        Manubuzzi
        Participant

         

        Dian
         
        My mom is 45 years old, and I am 24. We live in Tres Arroyos, Buenos Aires province, Argentina. Until January we were living a fantastic life, really. Sometimes I thought about how lucky I was, and now I am undestanding how life works.
         
        I hope God will hear your words.
         
        Thank you again
        Loading spinner
      dian in spokane
      Participant

      Hi Manuel,

      I'm glad to see you moved this post over here to the main board, where you are more likely to get input from people with the same kinds of experience. I see by your response over on the off topic board that you have two teenaged sisters, and I am guessing you are also a young man. This makes me think your mother might not be that old herself, which might be encouraging for her chances for recovery.

      I hope that the doctors can get those brain tumors taken care of quickly, and that your mother can recover quickly.

      I'm glad you found your way here,

       

      Dian

      Loading spinner
      Carmon in NM
      Participant

      Hello Manuel – I also had two brain tumors diagnosed in June 2010. In my case I was diagnosed originally with Stage 3b melanoma in September 2008. I had no symptoms until one brain tumor began bleeding into my brain.

      I had a craniotomy followed by gamma knife surgery (focued gamma radiation beam) in July to treat both tumors. The GKS was very easy. The most difficult part was having a metal halo mounted to my skull to hold my head completely still so that the radiation beams could hit their target. I went home feeling just fine and the only side effects were fatigue for a short time.

      All of my brain MRIs have shown no new tumors and no growth in the old ones and they are now considered to be just scar tissue.

      The follow up CT scan done in September 2010 showed a new tumor on my right adrenal gland and my oncologist decided she wanted to do a system treatment. I chose a clinical drug trial combining carboplatin, paxitaxil and temodar in a six month treatment with drug infusions every 28 days.

      After two infusions, the tumor on my adrenal gland had shrunk more than 50% and it continued to shrink more after each infusion. The CT scan done in February showed that it was so small that they don't expect it to even show on the scans I will have on April 13th.

      The next step for me will be surgery on April 19th to remove the right adrenal gland and any remaining tissue from the tumor.

      The chemotherapy treatment was an IV infusion of carboplatin and paxitaxil followed by a five day course of oral temodar (240 mg) taken once a day. It is hard to separate which side effects came from which drugs but on the days I had the temodar my desire for food disapeared. I felt weak and a little off balance and I had nerve pain in my hands and feet.

      Other than the fatigue that got worse with each course of treatment it was all very manageable and the medications they gave me for nausea worked very well. As soon as I finished the temodar, my appetite would come back and up until the last two treatments, I even gained a little weight each time.

      If there are any specific questions you would like to ask me, please do and I will hold you, your mother and your family in my thoughts and prayers.

      Carmon in New Mexico – Stage 3b 9/2008, Stage 4 6/2010

      Loading spinner
        Manubuzzi
        Participant

         

        Dear Carmon,

        I am SO glad to know that you are winning this horrible fight.  You are giving me the strength I need to do the same and to not give up!  You are a great example for me, and surely, for many others.  I know that when my mother begins her treatments that there will arise doubts, and it would be of great help to us, if it wouldn’t bother you, if I could ask you questions about the specific experiences that you have had or the things that you have seen.  Along with the treatments that you mentioned, did you have anything that you did in conjunction? Like, specific diets, dietary suppliments, etc?  As of yet, no one has mentioned Gamma Knife as part of my mother’s treatment.  I hope that it is available in Argentina, but as of yeat, I have no idea.  I will keep you updated, and I hope that you’ll keep me updated as well as to your Elath and progress.  Thank you so much!

        A big hug,

        Manuel

        Loading spinner
        Carmon in NM
        Participant

        Hello again Manuel – I am so happy to be of any kind of help at all and if you would ever like to email my privately, you can at [email protected] Your english is excellent and I am assuming Spanish is your native language. If so and if you ever need any help understanding something in english, my husband is fluent in Spanish and I am sure he would be glad to help translate.

        I did do extra things that helped me very much. I see an acupuncturist at least twice a month and those treatments do wonders for some of the pain I experienced as well as managing nausea and desire for food. Acupuncture also helps to boost and maintain the immune system. My doctors were regularly surprised that my white cell count never dropped much below normal through the whole six months of chemotherapy!

        I also see a chiropractor at least twice a month mostly because I am so less active right now and I have a ruptured disc. She helped me to keep my spine from adding to any pain and also, she did cranio sacral adjustments after the brain surgery and GKS which immediately helped to reduce any pain an feelings of pressure in my head.

        The other thing I did was to see a Doctor of Homeopathy and Nutrition. She worked with me individually on diet and supplements that would support me but not interfere with how the chemotherapy works. I refer to all of these women as my 'Healing Team' and they have not only helped me, they have become very good friends!

        Again, please contact me at any time if you need to and come back to this forum with all of your treatment questions. The people here have a wealth of knowledge to help you and your family! Many prayers for you all –

        Carmon in NM – Stage III3 9/2008, StageIV 6/2010

        Loading spinner
        Manubuzzi
        Participant

         

        Hello Carmon,
         
        My English isn't perfect, but I have help from my girlfriend who is from the U.S. ;)  I don't have a problem understanding written English, but spoken English is much more complicated.  I am taking your advice about the Acupuncturist and I'm going to try to get my mother a few appointments to see if it helps her with her regain some of her speech.  My mother has yet to be in any pain so we're going to hold off on the Chiropractor for now.  I know that we have to get to a Nutritionist and find her a supplement.
         
        Thank you so much for your time, help, and prayers.
        Loading spinner
        Manubuzzi
        Participant

         

        Hello Carmon,
         
        My English isn't perfect, but I have help from my girlfriend who is from the U.S. ;)  I don't have a problem understanding written English, but spoken English is much more complicated.  I am taking your advice about the Acupuncturist and I'm going to try to get my mother a few appointments to see if it helps her with her regain some of her speech.  My mother has yet to be in any pain so we're going to hold off on the Chiropractor for now.  I know that we have to get to a Nutritionist and find her a supplement.
         
        Thank you so much for your time, help, and prayers.
        Loading spinner
        Carmon in NM
        Participant

        Hello again Manuel – I am so happy to be of any kind of help at all and if you would ever like to email my privately, you can at [email protected] Your english is excellent and I am assuming Spanish is your native language. If so and if you ever need any help understanding something in english, my husband is fluent in Spanish and I am sure he would be glad to help translate.

        I did do extra things that helped me very much. I see an acupuncturist at least twice a month and those treatments do wonders for some of the pain I experienced as well as managing nausea and desire for food. Acupuncture also helps to boost and maintain the immune system. My doctors were regularly surprised that my white cell count never dropped much below normal through the whole six months of chemotherapy!

        I also see a chiropractor at least twice a month mostly because I am so less active right now and I have a ruptured disc. She helped me to keep my spine from adding to any pain and also, she did cranio sacral adjustments after the brain surgery and GKS which immediately helped to reduce any pain an feelings of pressure in my head.

        The other thing I did was to see a Doctor of Homeopathy and Nutrition. She worked with me individually on diet and supplements that would support me but not interfere with how the chemotherapy works. I refer to all of these women as my 'Healing Team' and they have not only helped me, they have become very good friends!

        Again, please contact me at any time if you need to and come back to this forum with all of your treatment questions. The people here have a wealth of knowledge to help you and your family! Many prayers for you all –

        Carmon in NM – Stage III3 9/2008, StageIV 6/2010

        Loading spinner
        Manubuzzi
        Participant

         

        Dear Carmon,

        I am SO glad to know that you are winning this horrible fight.  You are giving me the strength I need to do the same and to not give up!  You are a great example for me, and surely, for many others.  I know that when my mother begins her treatments that there will arise doubts, and it would be of great help to us, if it wouldn’t bother you, if I could ask you questions about the specific experiences that you have had or the things that you have seen.  Along with the treatments that you mentioned, did you have anything that you did in conjunction? Like, specific diets, dietary suppliments, etc?  As of yet, no one has mentioned Gamma Knife as part of my mother’s treatment.  I hope that it is available in Argentina, but as of yeat, I have no idea.  I will keep you updated, and I hope that you’ll keep me updated as well as to your Elath and progress.  Thank you so much!

        A big hug,

        Manuel

        Loading spinner
      Carmon in NM
      Participant

      Hello Manuel – I also had two brain tumors diagnosed in June 2010. In my case I was diagnosed originally with Stage 3b melanoma in September 2008. I had no symptoms until one brain tumor began bleeding into my brain.

      I had a craniotomy followed by gamma knife surgery (focued gamma radiation beam) in July to treat both tumors. The GKS was very easy. The most difficult part was having a metal halo mounted to my skull to hold my head completely still so that the radiation beams could hit their target. I went home feeling just fine and the only side effects were fatigue for a short time.

      All of my brain MRIs have shown no new tumors and no growth in the old ones and they are now considered to be just scar tissue.

      The follow up CT scan done in September 2010 showed a new tumor on my right adrenal gland and my oncologist decided she wanted to do a system treatment. I chose a clinical drug trial combining carboplatin, paxitaxil and temodar in a six month treatment with drug infusions every 28 days.

      After two infusions, the tumor on my adrenal gland had shrunk more than 50% and it continued to shrink more after each infusion. The CT scan done in February showed that it was so small that they don't expect it to even show on the scans I will have on April 13th.

      The next step for me will be surgery on April 19th to remove the right adrenal gland and any remaining tissue from the tumor.

      The chemotherapy treatment was an IV infusion of carboplatin and paxitaxil followed by a five day course of oral temodar (240 mg) taken once a day. It is hard to separate which side effects came from which drugs but on the days I had the temodar my desire for food disapeared. I felt weak and a little off balance and I had nerve pain in my hands and feet.

      Other than the fatigue that got worse with each course of treatment it was all very manageable and the medications they gave me for nausea worked very well. As soon as I finished the temodar, my appetite would come back and up until the last two treatments, I even gained a little weight each time.

      If there are any specific questions you would like to ask me, please do and I will hold you, your mother and your family in my thoughts and prayers.

      Carmon in New Mexico – Stage 3b 9/2008, Stage 4 6/2010

      Loading spinner
      ADSCLT
      Participant

      Hi Manuel,

      Our family has found ourselved in the same position.  My father was diagnosed in late November, 2010 with stage 3.  He had two surgeries and we were feeling a little less panic.  Then 2 1/2 weeks ago, we found he had 6 brain tumors.  The tumors have robbed him of his eyesight and has paralyzed the right side of his face.  He immediately had whole brain radiation and just finished last Friday.  We are now waiting to see how the tumors will react to the radiation.  Our next step is to decide which path of treatment to take. 

      Our family is terrified as well.  I have found comfort on this website reading the stories of men and women "beating the odds". Several people have given me advice on treatments and questions to ask at his appointments.  When we met with the doctors, I was well informed going in which help me not feel so overwelmed.  Research as much as you can, let the people on this board help you be an advocate for your mother, and read the encouraging stories of survival. 

      I will pray for you and your family.  May God give your mother healing and your family strength.

       

      Take care,

      April

      Loading spinner
        Manubuzzi
        Participant

         

        April,

        The first thing that one thinks when you are in this situation is:  Why my mother??  Then you start to see that there are so many people in the same situation and that cancer is the cruelest illness and that it takes so many lives daily.  And you are filled with an indescribable panic.  It deeply saddens me to know that you too are going through the same situation.  I wish you all the luck in the world and I am praying for strength and peace for you and your family.  From the bottom of my heart, I thank you for your words.  You have given me strength, and hope, and a sense companionship.

         

        Thank you and a big hug to your father,

        Manuel

        Loading spinner
        ADSCLT
        Participant

        Manuel,

        If you need someone to talk to, feel free to contact me at any time.  This is an unfortuanate journey we will take at the same time.  I'll be glad to share any suggestions we get from our doctors.  Maybe you can share the same.  I hope today was a little better for you.

         

        Still praying,

        April

        [email protected]

        Loading spinner
        Manubuzzi
        Participant

        Today my mother started taking Temodar.  She woke up very lethargic and didn't even want to do her physical therapy to regain mobility.  She is fatigued and very sad.  At the same time, she is having more and more difficulty speaking.  She has to take Temodar for 6 days.  Does anyone know how long the drug's side effects last ?????

        Loading spinner
        Carmon in NM
        Participant

        My side effects from temodar would begin to clear up about 24 hours after I took the last pill and I would say they were gone completely in three days at the most. I hope so much that your mother responds and does not have too much trouble with the temodar.

        I had very low energy too and my blood pressure would go down at night or if I was sitting too long. There was one night when I was taking it that I got up too fast and fainted. I found out that is a possible side effect so be sure that she knows to stand up slowly to let her blood pressure adjust.

        I was never sad or depressed while I was taking it but we are each individuals. If that continues, you might talk to her doctors about an antidepressant for her. It is important that she keeps her spirits as strong as possible. It is wonderful that she has such a supportive and loving family around her!

        Prayers for you all,

        Carmon in New Mexico

        Loading spinner
        Carmon in NM
        Participant

        My side effects from temodar would begin to clear up about 24 hours after I took the last pill and I would say they were gone completely in three days at the most. I hope so much that your mother responds and does not have too much trouble with the temodar.

        I had very low energy too and my blood pressure would go down at night or if I was sitting too long. There was one night when I was taking it that I got up too fast and fainted. I found out that is a possible side effect so be sure that she knows to stand up slowly to let her blood pressure adjust.

        I was never sad or depressed while I was taking it but we are each individuals. If that continues, you might talk to her doctors about an antidepressant for her. It is important that she keeps her spirits as strong as possible. It is wonderful that she has such a supportive and loving family around her!

        Prayers for you all,

        Carmon in New Mexico

        Loading spinner
        FormerCaregiver
        Participant

        Sorry to read about your mother's condition. Melanoma is certainly a
        horrible disease, and until very recently there wasn't much that doctors
        could offer patients. However, some people in this forum have managed to be
        reasonably ok for a very long time. They have taken some of the new drugs
        that are available through clinical trials.

        Here is some info about clinical trials in Argentina:
        http://www.clinicaltrials.gov/ct2/results?term=melanoma+&recr=&rslt=&type=&cond=&intr=&outc=&lead=&spons=&id=&state1=&cntry1=SA%3AAR&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=

        This is a link to a website about Temodar:
        http://www.temodar.com/temodar/patients.jsp

        Here are some answers to the questions that people have asked:
        http://www.temodar.com/temodar/freq_ask_que.jsp

        Hope that this information is helpful.

        Frank

        Loading spinner
        FormerCaregiver
        Participant

        Sorry to read about your mother's condition. Melanoma is certainly a
        horrible disease, and until very recently there wasn't much that doctors
        could offer patients. However, some people in this forum have managed to be
        reasonably ok for a very long time. They have taken some of the new drugs
        that are available through clinical trials.

        Here is some info about clinical trials in Argentina:
        http://www.clinicaltrials.gov/ct2/results?term=melanoma+&recr=&rslt=&type=&cond=&intr=&outc=&lead=&spons=&id=&state1=&cntry1=SA%3AAR&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=

        This is a link to a website about Temodar:
        http://www.temodar.com/temodar/patients.jsp

        Here are some answers to the questions that people have asked:
        http://www.temodar.com/temodar/freq_ask_que.jsp

        Hope that this information is helpful.

        Frank

        Loading spinner
        Manubuzzi
        Participant

        Today my mother started taking Temodar.  She woke up very lethargic and didn't even want to do her physical therapy to regain mobility.  She is fatigued and very sad.  At the same time, she is having more and more difficulty speaking.  She has to take Temodar for 6 days.  Does anyone know how long the drug's side effects last ?????

        Loading spinner
        ADSCLT
        Participant

        Manuel,

        If you need someone to talk to, feel free to contact me at any time.  This is an unfortuanate journey we will take at the same time.  I'll be glad to share any suggestions we get from our doctors.  Maybe you can share the same.  I hope today was a little better for you.

         

        Still praying,

        April

        [email protected]

        Loading spinner
        Manubuzzi
        Participant

         

        April,

        The first thing that one thinks when you are in this situation is:  Why my mother??  Then you start to see that there are so many people in the same situation and that cancer is the cruelest illness and that it takes so many lives daily.  And you are filled with an indescribable panic.  It deeply saddens me to know that you too are going through the same situation.  I wish you all the luck in the world and I am praying for strength and peace for you and your family.  From the bottom of my heart, I thank you for your words.  You have given me strength, and hope, and a sense companionship.

         

        Thank you and a big hug to your father,

        Manuel

        Loading spinner
      ADSCLT
      Participant

      Hi Manuel,

      Our family has found ourselved in the same position.  My father was diagnosed in late November, 2010 with stage 3.  He had two surgeries and we were feeling a little less panic.  Then 2 1/2 weeks ago, we found he had 6 brain tumors.  The tumors have robbed him of his eyesight and has paralyzed the right side of his face.  He immediately had whole brain radiation and just finished last Friday.  We are now waiting to see how the tumors will react to the radiation.  Our next step is to decide which path of treatment to take. 

      Our family is terrified as well.  I have found comfort on this website reading the stories of men and women "beating the odds". Several people have given me advice on treatments and questions to ask at his appointments.  When we met with the doctors, I was well informed going in which help me not feel so overwelmed.  Research as much as you can, let the people on this board help you be an advocate for your mother, and read the encouraging stories of survival. 

      I will pray for you and your family.  May God give your mother healing and your family strength.

       

      Take care,

      April

      Loading spinner
      MaryD
      Participant

      Hello Manuel,

      I just read and was so touched by your post as I can tell how dearly you love your mother and how incredibly difficult this situation is for all of you.  I'm glad you found this board because there are many of us surviving this insidious disease (I am stage IV as well) and a wealth of information and experiences that might help you.

      It's good to know your Mom is in the hands of a top specialist and it's clear that an aggressive treatment plan is needed.  Do you know what type of radiation treatment they will be doing yet?   As others have mentioned, for one or two tumors, Gamma knife can be done but in some cases, depeneding on the tumor burden, whole brain radiation is done.

      Once that is under control, hopefully Dr. Silva can determine what targeted immunotherapy is best suited to you mother's case.

      Please keep us posted and know that all of you are in my thoughts and prayers . .

      Mary

      Loading spinner
      MaryD
      Participant

      Hello Manuel,

      I just read and was so touched by your post as I can tell how dearly you love your mother and how incredibly difficult this situation is for all of you.  I'm glad you found this board because there are many of us surviving this insidious disease (I am stage IV as well) and a wealth of information and experiences that might help you.

      It's good to know your Mom is in the hands of a top specialist and it's clear that an aggressive treatment plan is needed.  Do you know what type of radiation treatment they will be doing yet?   As others have mentioned, for one or two tumors, Gamma knife can be done but in some cases, depeneding on the tumor burden, whole brain radiation is done.

      Once that is under control, hopefully Dr. Silva can determine what targeted immunotherapy is best suited to you mother's case.

      Please keep us posted and know that all of you are in my thoughts and prayers . .

      Mary

      Loading spinner
      LynnLuc
      Participant

      My first treatment was radiation and temodar…from July 09 ( when I had the radiation and started temodar) and I continued to take temodar til march 2010 when it stopped working. I had surgery in March 2010 and had the melanoma removed…then I started a immunotherapy trial with MDX 1106 and 6 peptides. I have now been without disease for 1 year.

      I didn't have it in my brain but I know many people who did have it there and they are still alive and doing well.-hoping your mom does well as well! Lynn

      Loading spinner
      LynnLuc
      Participant

      My first treatment was radiation and temodar…from July 09 ( when I had the radiation and started temodar) and I continued to take temodar til march 2010 when it stopped working. I had surgery in March 2010 and had the melanoma removed…then I started a immunotherapy trial with MDX 1106 and 6 peptides. I have now been without disease for 1 year.

      I didn't have it in my brain but I know many people who did have it there and they are still alive and doing well.-hoping your mom does well as well! Lynn

      Loading spinner
      Manubuzzi
      Participant

       

      Thank you all for your messages, they have really given me a lot of strength.  My mother knows about you all and she sends you a big kiss, her warmest wishes of strength and hope, and a hug all the way from Argentina.  Yesterday she finished the Temodar treatment, it was 5 days of 400grams/day.  Only one of those days was she fatigued and with sore muscles.  She feels better now.  In the last few days, she has been able to speak a bit better.  We don’t know if the swelling went down from the surgery on 2/24 or if the Temodar had some effect on the tumors. 

       In response to Mary:  we are starting the treatment tomorrow.  It will consist of radiation with accelerated lineal in the entire brain, a total of 20 sessions.  (What side effects can we expect, other than hair loss?)  Our Oncologist said that this treatment should be able to combat the brain tumors and then we’ll be able to continue with treatment for the immune system.  He also mentioned two alternatives: Ipilimumab or Interleukin-2 in high dosages.  This would mainly be to attack the 16mm tumor in the liver.  I am hopeful that the radiation and Temodar will do their jobs and control the illness in the brain.  If it is controlled, will IPi and IL-2 help to avoid a return of the tumors? 

       

      Something else that was unclear to me, and maybe you all can help me understand:  In the PET scan report, it mentions that the only hyper-metabolic tumor is the tumor in the liver.  What does that mean?  What importance or implications should I attach to the grade of metabolism of the tumors?

       Thank you all again for your words and your help and advice!  We will support her as much as we can. Thank you again and good luck!

      Manuel

      Loading spinner
        Carol Taylor
        Participant

        All the best to Mom, you, and your siblings Manuel!  Glad to hear things are looking up.  Keep us informed on what happens. OK?

        Prayers and blessings to you all.

        Carol  3b

        Loading spinner
        Carol Taylor
        Participant

        All the best to Mom, you, and your siblings Manuel!  Glad to hear things are looking up.  Keep us informed on what happens. OK?

        Prayers and blessings to you all.

        Carol  3b

        Loading spinner
        Carmon in NM
        Participant

        Hi Manuel – I'm sure there are others who can give a better scientific explanation about a PET metabolic response but I will try to give a simple one. The PET scan reads a a radioactive trace in a sugar solution that is injected into your blood via an IV. Rapidly dividing cells like cancer cells, take up sugar very quickly. This is why for 24 hours before the PET scan you are not allowed to eat foods high in sugar or carbohydrates and then fast before the scan.

        During the one hour wait between when you get the IV and the scan, the hungry growing cancer cells will take up the radioactive sugar solution very fast. This will show up on the PET scan as a brightly lit or 'hot' spot. When they say that the liver tumor is the only one showing a hyper-metabolic response, it is the only one that is showing active growth and taking up the radioactive trace. To me that would be a good thing! It would mean that the brain tumors are not showing any growth right now.

        I haven't had whole brain radiation or the other treatments and to get people who have had those to respond, you might start a new post with those questions in the title to get new attention.

        Hugs back to your mother – Carmon in NM

        Loading spinner
        Carmon in NM
        Participant

        Hi Manuel – I'm sure there are others who can give a better scientific explanation about a PET metabolic response but I will try to give a simple one. The PET scan reads a a radioactive trace in a sugar solution that is injected into your blood via an IV. Rapidly dividing cells like cancer cells, take up sugar very quickly. This is why for 24 hours before the PET scan you are not allowed to eat foods high in sugar or carbohydrates and then fast before the scan.

        During the one hour wait between when you get the IV and the scan, the hungry growing cancer cells will take up the radioactive sugar solution very fast. This will show up on the PET scan as a brightly lit or 'hot' spot. When they say that the liver tumor is the only one showing a hyper-metabolic response, it is the only one that is showing active growth and taking up the radioactive trace. To me that would be a good thing! It would mean that the brain tumors are not showing any growth right now.

        I haven't had whole brain radiation or the other treatments and to get people who have had those to respond, you might start a new post with those questions in the title to get new attention.

        Hugs back to your mother – Carmon in NM

        Loading spinner
      Manubuzzi
      Participant

       

      Thank you all for your messages, they have really given me a lot of strength.  My mother knows about you all and she sends you a big kiss, her warmest wishes of strength and hope, and a hug all the way from Argentina.  Yesterday she finished the Temodar treatment, it was 5 days of 400grams/day.  Only one of those days was she fatigued and with sore muscles.  She feels better now.  In the last few days, she has been able to speak a bit better.  We don’t know if the swelling went down from the surgery on 2/24 or if the Temodar had some effect on the tumors. 

       In response to Mary:  we are starting the treatment tomorrow.  It will consist of radiation with accelerated lineal in the entire brain, a total of 20 sessions.  (What side effects can we expect, other than hair loss?)  Our Oncologist said that this treatment should be able to combat the brain tumors and then we’ll be able to continue with treatment for the immune system.  He also mentioned two alternatives: Ipilimumab or Interleukin-2 in high dosages.  This would mainly be to attack the 16mm tumor in the liver.  I am hopeful that the radiation and Temodar will do their jobs and control the illness in the brain.  If it is controlled, will IPi and IL-2 help to avoid a return of the tumors? 

       

      Something else that was unclear to me, and maybe you all can help me understand:  In the PET scan report, it mentions that the only hyper-metabolic tumor is the tumor in the liver.  What does that mean?  What importance or implications should I attach to the grade of metabolism of the tumors?

       Thank you all again for your words and your help and advice!  We will support her as much as we can. Thank you again and good luck!

      Manuel

      Loading spinner
Viewing 13 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.