Mom has RCC 4

My Mother was diagnosed with RCC stage 4 on 12/23/11. She had her left kidney removed 4/2012. Her recovery was fast she was very positive and strong. Had some pain but was given medication to help her. She started sutent end of May, did 2 rounds but it didnot help her at all. She did have side effects like mouth, hand and feet sores, fatigue and lack of apetite. Cancer has spread to Lungs, Vagina and Brain. She was starting a medical trial but had a seizure in 9/2012 and doctors discovered a brain tumor on right side brain. She had the tumor removed. It was very scary we were told that she might not be able to move or use her right side of her body. Thank God everything went "fine". It took a little bit longer then expected but she was good. About 3 months ago the started bleeding from her Vagina. It took us 3 trips to the ER to find out that she has a tumor in her vagina, same cells as kidney cancer. Has anyone has RCC spread to the vagina? She just finished 10 consecutive days of radiation treatments, 10 for the brain and 5 in pelvic area. The bleeding stopped but she still has a liquit coming out. The after effects of radiation are very bad. Mom has no apetite, no energy, sleeps all day, everything smells or tastes bad. She is loosing her hair (Something she always asked about). I think it finally hit her "CANCER". No matter what we say or do she is depressed. Can someone give me advice? Anyone going thru same thing?
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Comments

  • lizbthmagallon
    lizbthmagallon Member Posts: 30
    update for mother
    About 4 weeks ago mom started having severe back pain, Oncologist gave her some pain meds and requested a CT scan for the following week. 11/28/12 I took her to the ER mom was in tears, pain meds didnot work. After an xray and a CT scan dr. told us she has a lession on spine I believe is the first vertebrate. Mom was admitted due to her pain, She is given morfin every 3 hrs. Now what? Mom is very tired, no appetite and lost all her hair.
  • angec
    angec Member Posts: 924

    update for mother
    About 4 weeks ago mom started having severe back pain, Oncologist gave her some pain meds and requested a CT scan for the following week. 11/28/12 I took her to the ER mom was in tears, pain meds didnot work. After an xray and a CT scan dr. told us she has a lession on spine I believe is the first vertebrate. Mom was admitted due to her pain, She is given morfin every 3 hrs. Now what? Mom is very tired, no appetite and lost all her hair.

    So sorry to hear about your
    So sorry to hear about your mom. What hospital is she affiliated with? I would suggest ASAP you should get her to one of the big hospitals that deal with cancer, depending on where you are. You didn't mention her age or type of RCC. There are many other things out there besides Sutent. Have they suggested Votrient, Avastin or anything further since the Sutent didn't help her? Let us know where you are located and fhose on the boards will suggest doctors. Also look on the front of this site for dr. Referrals for your area. You want to be sure you see an RCC specialist. Ask about trials. Keep her spirits high and let her know there is alot more that can be done. RCC has alot of targeted therapies and is not automatically a death sentence, but is managed as a chronic disease. Once she hears this she will feel better. I have never heard of it in that area that you mention, hopefully you will get more replies.

    Please keep us posted. Praying for strength and right decisions for you both.
  • angec
    angec Member Posts: 924

    update for mother
    About 4 weeks ago mom started having severe back pain, Oncologist gave her some pain meds and requested a CT scan for the following week. 11/28/12 I took her to the ER mom was in tears, pain meds didnot work. After an xray and a CT scan dr. told us she has a lession on spine I believe is the first vertebrate. Mom was admitted due to her pain, She is given morfin every 3 hrs. Now what? Mom is very tired, no appetite and lost all her hair.

    So sorry to hear about your
    So sorry to hear about your mom. What hospital is she affiliated with? I would suggest ASAP you should get her to one of the big hospitals that deal with cancer, depending on where you are. You didn't mention her age or type of RCC. There are many other things out there besides Sutent. Have they suggested Votrient, Avastin or anything further since the Sutent didn't help her? Let us know where you are located and fhose on the boards will suggest doctors. Also look on the front of this site for dr. Referrals for your area. You want to be sure you see an RCC specialist. Ask about trials. Keep her spirits high and let her know there is alot more that can be done. RCC has alot of targeted therapies and is not automatically a death sentence, but is managed as a chronic disease. Once she hears this she will feel better. I have never heard of it in that area that you mention, hopefully you will get more replies.

    Please keep us posted. Praying for strength and right decisions for you both.
  • angec
    angec Member Posts: 924

    update for mother
    About 4 weeks ago mom started having severe back pain, Oncologist gave her some pain meds and requested a CT scan for the following week. 11/28/12 I took her to the ER mom was in tears, pain meds didnot work. After an xray and a CT scan dr. told us she has a lession on spine I believe is the first vertebrate. Mom was admitted due to her pain, She is given morfin every 3 hrs. Now what? Mom is very tired, no appetite and lost all her hair.

    So sorry to hear about your
    So sorry to hear about your mom. What hospital is she affiliated with? I would suggest ASAP you should get her to one of the big hospitals that deal with cancer, depending on where you are. You didn't mention her age or type of RCC. There are many other things out there besides Sutent. Have they suggested Votrient, Avastin or anything further since the Sutent didn't help her? Let us know where you are located and fhose on the boards will suggest doctors. Also look on the front of this site for dr. Referrals for your area. You want to be sure you see an RCC specialist. Ask about trials. Keep her spirits high and let her know there is alot more that can be done. RCC has alot of targeted therapies and is not automatically a death sentence, but is managed as a chronic disease. Once she hears this she will feel better. I have never heard of it in that area that you mention, hopefully you will get more replies.

    Please keep us posted. Praying for strength and right decisions for you both.
  • angec
    angec Member Posts: 924

    update for mother
    About 4 weeks ago mom started having severe back pain, Oncologist gave her some pain meds and requested a CT scan for the following week. 11/28/12 I took her to the ER mom was in tears, pain meds didnot work. After an xray and a CT scan dr. told us she has a lession on spine I believe is the first vertebrate. Mom was admitted due to her pain, She is given morfin every 3 hrs. Now what? Mom is very tired, no appetite and lost all her hair.

    So sorry to hear about your
    So sorry to hear about your mom. What hospital is she affiliated with? I would suggest ASAP you should get her to one of the big hospitals that deal with cancer, depending on where you are. You didn't mention her age or type of RCC. There are many other things out there besides Sutent. Have they suggested Votrient, Avastin or anything further since the Sutent didn't help her? Let us know where you are located and fhose on the boards will suggest doctors. Also look on the front of this site for dr. Referrals for your area. You want to be sure you see an RCC specialist. Ask about trials. Keep her spirits high and let her know there is alot more that can be done. RCC has alot of targeted therapies and is not automatically a death sentence, but is managed as a chronic disease. Once she hears this she will feel better. I have never heard of it in that area that you mention, hopefully you will get more replies.

    Please keep us posted. Praying for strength and right decisions for you both.
  • foxhd
    foxhd Member Posts: 3,181
    angec said:

    So sorry to hear about your
    So sorry to hear about your mom. What hospital is she affiliated with? I would suggest ASAP you should get her to one of the big hospitals that deal with cancer, depending on where you are. You didn't mention her age or type of RCC. There are many other things out there besides Sutent. Have they suggested Votrient, Avastin or anything further since the Sutent didn't help her? Let us know where you are located and fhose on the boards will suggest doctors. Also look on the front of this site for dr. Referrals for your area. You want to be sure you see an RCC specialist. Ask about trials. Keep her spirits high and let her know there is alot more that can be done. RCC has alot of targeted therapies and is not automatically a death sentence, but is managed as a chronic disease. Once she hears this she will feel better. I have never heard of it in that area that you mention, hopefully you will get more replies.

    Please keep us posted. Praying for strength and right decisions for you both.

    Sorry
    Liz, so sorry to hear about your mom. I agree with Ange. It seems that many Docs and smaller hospitals really are not equipped to deal with these issues. They try their best but positive outcomes are not always achieved. Larger more focused facilities have an entirely more effective process for dealing with complicated cases. Do a little more investigation into finding care for mom.
  • lizbthmagallon
    lizbthmagallon Member Posts: 30
    angec said:

    So sorry to hear about your
    So sorry to hear about your mom. What hospital is she affiliated with? I would suggest ASAP you should get her to one of the big hospitals that deal with cancer, depending on where you are. You didn't mention her age or type of RCC. There are many other things out there besides Sutent. Have they suggested Votrient, Avastin or anything further since the Sutent didn't help her? Let us know where you are located and fhose on the boards will suggest doctors. Also look on the front of this site for dr. Referrals for your area. You want to be sure you see an RCC specialist. Ask about trials. Keep her spirits high and let her know there is alot more that can be done. RCC has alot of targeted therapies and is not automatically a death sentence, but is managed as a chronic disease. Once she hears this she will feel better. I have never heard of it in that area that you mention, hopefully you will get more replies.

    Please keep us posted. Praying for strength and right decisions for you both.

    Hi Angec,
    We are located in

    Hi Angec,

    We are located in Los Angeles, CA. She is been treated at a Los Angeles County Hospital, LAC + USC. Doctors suggested a medical trial but thats when we learned she had a brain tumor, and had surgery. So, the whole trial thing is on hold. She will be released from hospital today and thursday 12/6/12 she has an appointment with Oncologist to see whats the plan. She is giving up I cant see her in the pain she is in now.
  • lizbthmagallon
    lizbthmagallon Member Posts: 30
    foxhd said:

    Sorry
    Liz, so sorry to hear about your mom. I agree with Ange. It seems that many Docs and smaller hospitals really are not equipped to deal with these issues. They try their best but positive outcomes are not always achieved. Larger more focused facilities have an entirely more effective process for dealing with complicated cases. Do a little more investigation into finding care for mom.

    Thabk you Foxhd. I am trying
    Thabk you Foxhd. I am trying to find a more specialised hospital but county hospital is the best in this area. Plus, my mom does not have insurance; our options are minimal at this point. I just want her to get the best medical attention and fast. But, unfortunately at a county hospital there is alot of waiting and many are in need.
  • CAPNMatt
    CAPNMatt Member Posts: 13
    RCC 4
    Don't think that she is giving up. She has been through a lot and is in extreme pain. The morphine causes a loss of appetite as well. I am dealing with a similar situation. My cancer has spread to liver, lungs, veins and now spine. The radiation also sucks, but reduced my pain tremendously. Try bread and ENSURE and crackers to calm her stomach. She has battled for an entire year. She is a hero.
  • lizbthmagallon
    lizbthmagallon Member Posts: 30
    CAPNMatt said:

    RCC 4
    Don't think that she is giving up. She has been through a lot and is in extreme pain. The morphine causes a loss of appetite as well. I am dealing with a similar situation. My cancer has spread to liver, lungs, veins and now spine. The radiation also sucks, but reduced my pain tremendously. Try bread and ENSURE and crackers to calm her stomach. She has battled for an entire year. She is a hero.

    Im sorry that you are going
    Im sorry that you are going through this CAPMatt. I dont think she is giving up but she is very sad. We are a family of faith and accept HIS will. Mom is drinking Ensure and will eat baby food , jell-o, yogurt, rice pudding. She just does not have appetite for what she used to. What is the plan for your spine CAPMatt? I just hate how much pain she is in, I can handle everything but to see my mom cry due to pain, kills me!!!!
  • Robin_Martinez
    Robin_Martinez Member Posts: 6

    Hi Angec,
    We are located in

    Hi Angec,

    We are located in Los Angeles, CA. She is been treated at a Los Angeles County Hospital, LAC + USC. Doctors suggested a medical trial but thats when we learned she had a brain tumor, and had surgery. So, the whole trial thing is on hold. She will be released from hospital today and thursday 12/6/12 she has an appointment with Oncologist to see whats the plan. She is giving up I cant see her in the pain she is in now.

    Good RCC care without insurance near LA, CA
    Lizbth, City of Hope in Duarte is experienced with RCC and doesn't require insurance coverage. They are a great place for care. Can you get your mom there?

    Wishing you the best.........Robin
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Good RCC care without insurance near LA, CA
    Lizbth, City of Hope in Duarte is experienced with RCC and doesn't require insurance coverage. They are a great place for care. Can you get your mom there?

    Wishing you the best.........Robin

    Robin Martinez
    Message to all on this forum - please pray that this isn't Robin Martinez's first and last visit. Her presence would add immeasurable value here.

    Robin, WELCOME - I know you have at least 36 hours in your day so you should be able to manage the occasional visit here.
  • CAPNMatt
    CAPNMatt Member Posts: 13

    Im sorry that you are going
    Im sorry that you are going through this CAPMatt. I dont think she is giving up but she is very sad. We are a family of faith and accept HIS will. Mom is drinking Ensure and will eat baby food , jell-o, yogurt, rice pudding. She just does not have appetite for what she used to. What is the plan for your spine CAPMatt? I just hate how much pain she is in, I can handle everything but to see my mom cry due to pain, kills me!!!!

    Been there
    You are a very good daughter, Lzbth. I know exactly what you are going through. Last year, I was the caregiver for my twin sister as she was losing her battle with colon cancer. Sometimes she just needed to be held so she could cry. She is trying her hardest, but it gets old. I too would keep all kinds of quick food on hand to feed her whatever she wanted, whenever she wanted. Popsicles help also. If you look at my picture, the woman on the right in the red dress is my twin sister. The woman on the left in purple is my wife. Now, I am the patient is my wife is going through this all over again. My daughter still lives at home as well. Some days I just need to cry and be held. My faith and my family keep my pushing through. Keep giving her the pain meds. My sister was on up to 45mg MSCONTIN until she got the pain pump. Keep asking the doctors about new meds to deal with the soft tissue tumors. Radiation is about all you can do for the bone tumors. I am currently doing daily radiation treatments {x10} for my spine tumor {on T11}. Don't forget to take some time out for yourself when you can, also.
  • lizbthmagallon
    lizbthmagallon Member Posts: 30
    CAPNMatt said:

    Been there
    You are a very good daughter, Lzbth. I know exactly what you are going through. Last year, I was the caregiver for my twin sister as she was losing her battle with colon cancer. Sometimes she just needed to be held so she could cry. She is trying her hardest, but it gets old. I too would keep all kinds of quick food on hand to feed her whatever she wanted, whenever she wanted. Popsicles help also. If you look at my picture, the woman on the right in the red dress is my twin sister. The woman on the left in purple is my wife. Now, I am the patient is my wife is going through this all over again. My daughter still lives at home as well. Some days I just need to cry and be held. My faith and my family keep my pushing through. Keep giving her the pain meds. My sister was on up to 45mg MSCONTIN until she got the pain pump. Keep asking the doctors about new meds to deal with the soft tissue tumors. Radiation is about all you can do for the bone tumors. I am currently doing daily radiation treatments {x10} for my spine tumor {on T11}. Don't forget to take some time out for yourself when you can, also.

    it continues
    Mom had appt last Thursday. Was told by oncologist that she should have gotten emergency radiation, to aliviate the pain due to the tumor in spine. Mom was released from hospital 12/5/12 was there for 1 week. Alot of pain. She has been on morphine 2 weeks. Im so upset at everyone right now.!!! She is on 45mg of morphine pill (every 12 hours) and liquid morphine every 3 hours. Last night it got bad. She was crying in pain. Feels that if she is left alone she will die. She begs for us to stay all day with her. I hate to see her in pain and there is nothing I can do besides give her the medicine and talking. Mom had brain tumor removed from brain on left side, which controls the right side of body. She is afraid she will have another seizure and no one will be home with her to help her. Oh god!!
    Tomorrow she has appt with Radialogy. I hope she gets that relief soon. She is so weak and fragile I dont think she will be able to handle more pain. I should also mention that she had a blood transfusion due to anemia (7.0). I have been reading and prognosis is not good. Please help me!! What should I do? Anyone out there going through same? Her oncologist told me that she will die of this disease and told me her cancer is aggressive. what does this mean>?
  • foxhd
    foxhd Member Posts: 3,181

    it continues
    Mom had appt last Thursday. Was told by oncologist that she should have gotten emergency radiation, to aliviate the pain due to the tumor in spine. Mom was released from hospital 12/5/12 was there for 1 week. Alot of pain. She has been on morphine 2 weeks. Im so upset at everyone right now.!!! She is on 45mg of morphine pill (every 12 hours) and liquid morphine every 3 hours. Last night it got bad. She was crying in pain. Feels that if she is left alone she will die. She begs for us to stay all day with her. I hate to see her in pain and there is nothing I can do besides give her the medicine and talking. Mom had brain tumor removed from brain on left side, which controls the right side of body. She is afraid she will have another seizure and no one will be home with her to help her. Oh god!!
    Tomorrow she has appt with Radialogy. I hope she gets that relief soon. She is so weak and fragile I dont think she will be able to handle more pain. I should also mention that she had a blood transfusion due to anemia (7.0). I have been reading and prognosis is not good. Please help me!! What should I do? Anyone out there going through same? Her oncologist told me that she will die of this disease and told me her cancer is aggressive. what does this mean>?

    aggressive cancer
    So sorry that your mom is going through this Liz. It must be awful to feel so powerless in making this disease go away and give your mom comfort. If you can read this message before you take your mom to radiology I have a suggestion. At the hospital ask if you can speak to one of the medical social workers. They may be able to provide you with multiple support services. Some for your mom's care and some for your emotional support. They are the experts in dealing with situations like this. They have access to programs must of us are unaware of. We are sharing your pain Liz. Stay strong.
  • NanoSecond
    NanoSecond Member Posts: 653

    it continues
    Mom had appt last Thursday. Was told by oncologist that she should have gotten emergency radiation, to aliviate the pain due to the tumor in spine. Mom was released from hospital 12/5/12 was there for 1 week. Alot of pain. She has been on morphine 2 weeks. Im so upset at everyone right now.!!! She is on 45mg of morphine pill (every 12 hours) and liquid morphine every 3 hours. Last night it got bad. She was crying in pain. Feels that if she is left alone she will die. She begs for us to stay all day with her. I hate to see her in pain and there is nothing I can do besides give her the medicine and talking. Mom had brain tumor removed from brain on left side, which controls the right side of body. She is afraid she will have another seizure and no one will be home with her to help her. Oh god!!
    Tomorrow she has appt with Radialogy. I hope she gets that relief soon. She is so weak and fragile I dont think she will be able to handle more pain. I should also mention that she had a blood transfusion due to anemia (7.0). I have been reading and prognosis is not good. Please help me!! What should I do? Anyone out there going through same? Her oncologist told me that she will die of this disease and told me her cancer is aggressive. what does this mean>?

    Lizbth,
    I am very sorry to

    Lizbth,

    I am very sorry to hear what your mother (and you) are going through.

    Two suggestions. One, for bone mets, your mom should be getting either Xgeva (Denosumab) or Zometa (Zoledronic Acid). Of the two, Xgeva is preferred because it: 1) is given once a month as a shot; 2) it works faster than Zometa; 3) it does not stress the Kidney at all.

    The better (but more expensive) suggestion is to investigate a brand new drug that has just gotten approval from the FDA for the treatment of Medullary Thyroid cancer called Cometriq (better known as Carbozantinib). This drug has been in clinical trial up in Boston for the treatment of renal cancer and it has been shown to be highly effective for those with both bone mets and solid mass tumors. However, since it is not approved (yet) for treatment of renal cancer you will not be able to get insurance coverage to lower its cost. Nonetheless - discuss this option with your doctors.

    I hope this helps.
  • lizbthmagallon
    lizbthmagallon Member Posts: 30
    foxhd said:

    aggressive cancer
    So sorry that your mom is going through this Liz. It must be awful to feel so powerless in making this disease go away and give your mom comfort. If you can read this message before you take your mom to radiology I have a suggestion. At the hospital ask if you can speak to one of the medical social workers. They may be able to provide you with multiple support services. Some for your mom's care and some for your emotional support. They are the experts in dealing with situations like this. They have access to programs must of us are unaware of. We are sharing your pain Liz. Stay strong.

    Thank you for the advice
    Thank you for the advice Foxhd I will defenitely ask
  • lizbthmagallon
    lizbthmagallon Member Posts: 30

    Lizbth,
    I am very sorry to

    Lizbth,

    I am very sorry to hear what your mother (and you) are going through.

    Two suggestions. One, for bone mets, your mom should be getting either Xgeva (Denosumab) or Zometa (Zoledronic Acid). Of the two, Xgeva is preferred because it: 1) is given once a month as a shot; 2) it works faster than Zometa; 3) it does not stress the Kidney at all.

    The better (but more expensive) suggestion is to investigate a brand new drug that has just gotten approval from the FDA for the treatment of Medullary Thyroid cancer called Cometriq (better known as Carbozantinib). This drug has been in clinical trial up in Boston for the treatment of renal cancer and it has been shown to be highly effective for those with both bone mets and solid mass tumors. However, since it is not approved (yet) for treatment of renal cancer you will not be able to get insurance coverage to lower its cost. Nonetheless - discuss this option with your doctors.

    I hope this helps.

    Hi Nano Second,
    Mom did get

    Hi Nano Second,

    Mom did get Zometa on Friday and will have to get it every month.
  • NanoSecond
    NanoSecond Member Posts: 653

    Hi Nano Second,
    Mom did get

    Hi Nano Second,

    Mom did get Zometa on Friday and will have to get it every month.

    That is terrific news.
    I am

    That is terrific news.

    I am quite sure it will help.
  • lizbthmagallon
    lizbthmagallon Member Posts: 30

    That is terrific news.
    I am

    That is terrific news.

    I am quite sure it will help.

    Thank you all for your kind
    Thank you all for your kind words and advice I am very greatful.