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I need to find treatment for my father

Forums General Melanoma Community I need to find treatment for my father

  • Post
    Banu
    Participant

      Hi everybody,

      Hi everybody,

      Because my father could not get access to Yervoy and lost a lot of time waiting for it, he was supposed to start carbo/taxol on Tuesday, July 5th. However, we had to go to ER on 4th of July, because my father could not have a bowel movement after 5-7 days and was very bloated and in pain. When the ER doctors checked the blood, they found out that his red blood cell count is very low (5) and they admitted him to the hospital for blood transfusion and treatment. So, he could not make it to his chemo appointment and his doctor said that we need to wait a few days and see what is happening with him before we can decide whether to proceed with chemo, Yervoy or any other option that may be of help to my father.

      In the meantime, the primary care team at the hospital suggested that it is not a good idea to resuscitate my father if needed, because his prognosis is very poor. A doctor even told me that it would be better for him to pass away from a heart attack than endure cancer. When I told the doctors that we don't want to give up and try every possible option until the end, they advised me to be realistic. I know that the odds are slim, but there are those who were blessed with a response when it was least expected.

      My father has been weak in the last few days and was not able to walk on his own yesterday and today. He is not using any pain medication and did not need one until now. He is not giving up and wants to continue treatment and try everything possible. I don't want to give up on him either and hope for a miracle.

      My father is quite weak right now and was not able to walk on his own yesterday and today. He is not giving up though and I believe he wants to continue treatment and try everything possible. I don't want to give up on him either and hope for a miracle.

      He had five units of blood transfusion and his red blood cell count is around 8.5.

      His LD is 716 U/L, ALT 27 U/L and vitamin D > 135.

      Doctors say that his LD levels are too high and that they don't want to remove tumors unless it is obstructing an organ.

      I want to find a treatment that may be of help to my father. I need to get him stronger first, so that he will qualify for more treatments. Are there any suggestions? Would you recommend any supplements, products or treatments?

      Thank you all for your guidance.

    Viewing 3 reply threads
    • Replies
        shellebrownies
        Participant

          If your father is insistent that he wants to keep fighting, than the hospital should respect that wish and work with him.

          Insist on a palliative care team to come in to get his pain and his bowel movements under control. He needs to be as comfortable as possible to maintain a positive fighting mindset.

          Once someone progresses to Stage IV, surgery is usually contraindicated unless they can remove the active cancer in full. Otherwise, as you were told, only if the tumor's placement is poor and its removal would bring a significant improvement.

          Is he weak/unable to walk because of pain or another reason?

          Yes, your father's LDH level is high (normal ranges about 110-230), but my husband's was much higher when he started his chemo (2375!) so that alone shouldn't be a factor.

          He's got to get his bowels moving so he doesn't create a septic situation; then perhaps a combination of radiation and chemo? He needs something that has the possibility of stopping growth/shrinking tumors quickly and this is probably one of the few options he has at the moment.

          Wishing you the best of luck with your father's success!

          Michelle, wife of Don

            Banu
            Participant

              Hi Michelle,

              Thank you for your support.

              I told the doctors today that my father still wants to have treatment and even though odds may be against him, there are patients who have great response to treatment. I actually told the doctors about Don and how much he improved over the course of his treatment. Please let him know that both of you are a great inspiration.

              My father has been weak due to low red blood cell count. I believe low protein levels are a factor as well. However, he is feeling more energetic after the blood tranfusion and was able to walk today with a walker. By the way, he came to the ER walking. Even though he was slow and tired, he was able to walk. I guess lying in bed for several days took a toll on his strength as well. He is more energetic now and he has a good appetite, so I feel better today as well. I believe telling doctors once and for all that we are not done with treatments made me feel more relaxed as well. When one of the doctors asked my father how he is feeling today, he answered "so, so". The doctor asked what makes "so-so" good, what makes it bad. My father answered, the bad part is that he has to sit on his butt all day which hurts his bottom, that is the bad part. He said the good part is to have hope. I guess that summed it up well.

              My father has tumors in the lung, abdomen and subcutaneous tumors  as well as brain metastasis. There is no liver involvement yet and he is pain free. He is not even using Advil or Tylenol for pain. Right now, I want to get him strong and ready for the next step.

              I thank you very much for your guidance and support.

              Banu

              shellebrownies
              Participant

                Banu,

                Well, heck…your dad sounds like he's in better shape than Don was when he started chemo! There should be no reason why your father should give up now! : )

                If your father has brain metastases, you may want to ask if the oncologists can add Temodar to the Carbo/Taxol combo. I have heard good things about Temodar working on brain metastases. The other person I was telling you about who went NED was on Carbo/Taxol/Temodar.

                Even if it holds the growth at bay for a few months, it might be enough to get him another treatment.

                Banu, has your father been tested for the BRAF mutation? If not, that really should be the next step because those drugs have caused most patients on it to have great improvements also!

                Best of luck to you and your father as always.

                Michelle

                shellebrownies
                Participant

                  Oh, something else really quick…

                  If your dad is having issues with protein, have the hospital send up a protein drink (like Boost or Ensure) with each of his meals. They don't taste bad at all, and it would be a good way for your Dad to get more protein to help keep his strength up. 

                  When Don was in the hospital last month with the Staph infection he had, we asked the nurse about it and she made an easy call and got the kitchen staff to send him one with every meal. If he wasn't in the mood for it then, he'd keep it off the tray and have it later. 

                  Michelle

                  StevenK
                  Participant

                    I'd like to second the recommendation to use Ensure.

                    Steve

                    StevenK
                    Participant

                      I'd like to second the recommendation to use Ensure.

                      Steve

                      shellebrownies
                      Participant

                        Oh, something else really quick…

                        If your dad is having issues with protein, have the hospital send up a protein drink (like Boost or Ensure) with each of his meals. They don't taste bad at all, and it would be a good way for your Dad to get more protein to help keep his strength up. 

                        When Don was in the hospital last month with the Staph infection he had, we asked the nurse about it and she made an easy call and got the kitchen staff to send him one with every meal. If he wasn't in the mood for it then, he'd keep it off the tray and have it later. 

                        Michelle

                        shellebrownies
                        Participant

                          Banu,

                          Well, heck…your dad sounds like he's in better shape than Don was when he started chemo! There should be no reason why your father should give up now! : )

                          If your father has brain metastases, you may want to ask if the oncologists can add Temodar to the Carbo/Taxol combo. I have heard good things about Temodar working on brain metastases. The other person I was telling you about who went NED was on Carbo/Taxol/Temodar.

                          Even if it holds the growth at bay for a few months, it might be enough to get him another treatment.

                          Banu, has your father been tested for the BRAF mutation? If not, that really should be the next step because those drugs have caused most patients on it to have great improvements also!

                          Best of luck to you and your father as always.

                          Michelle

                          Banu
                          Participant

                            Hi Michelle,

                            Thank you for your support.

                            I told the doctors today that my father still wants to have treatment and even though odds may be against him, there are patients who have great response to treatment. I actually told the doctors about Don and how much he improved over the course of his treatment. Please let him know that both of you are a great inspiration.

                            My father has been weak due to low red blood cell count. I believe low protein levels are a factor as well. However, he is feeling more energetic after the blood tranfusion and was able to walk today with a walker. By the way, he came to the ER walking. Even though he was slow and tired, he was able to walk. I guess lying in bed for several days took a toll on his strength as well. He is more energetic now and he has a good appetite, so I feel better today as well. I believe telling doctors once and for all that we are not done with treatments made me feel more relaxed as well. When one of the doctors asked my father how he is feeling today, he answered "so, so". The doctor asked what makes "so-so" good, what makes it bad. My father answered, the bad part is that he has to sit on his butt all day which hurts his bottom, that is the bad part. He said the good part is to have hope. I guess that summed it up well.

                            My father has tumors in the lung, abdomen and subcutaneous tumors  as well as brain metastasis. There is no liver involvement yet and he is pain free. He is not even using Advil or Tylenol for pain. Right now, I want to get him strong and ready for the next step.

                            I thank you very much for your guidance and support.

                            Banu

                          shellebrownies
                          Participant

                            If your father is insistent that he wants to keep fighting, than the hospital should respect that wish and work with him.

                            Insist on a palliative care team to come in to get his pain and his bowel movements under control. He needs to be as comfortable as possible to maintain a positive fighting mindset.

                            Once someone progresses to Stage IV, surgery is usually contraindicated unless they can remove the active cancer in full. Otherwise, as you were told, only if the tumor's placement is poor and its removal would bring a significant improvement.

                            Is he weak/unable to walk because of pain or another reason?

                            Yes, your father's LDH level is high (normal ranges about 110-230), but my husband's was much higher when he started his chemo (2375!) so that alone shouldn't be a factor.

                            He's got to get his bowels moving so he doesn't create a septic situation; then perhaps a combination of radiation and chemo? He needs something that has the possibility of stopping growth/shrinking tumors quickly and this is probably one of the few options he has at the moment.

                            Wishing you the best of luck with your father's success!

                            Michelle, wife of Don

                            JerryfromFauq
                            Participant

                              This is why I am leary of having a Living Will. Would this eliminate extra efforts to bring me back from things like my dying in a horse accident last August.  My wife was afraid they would pull this line.  As it was my son, a Paramedic from Fla flew up and while (after being told I was stage IV melanoma,) the Neurological Intnsive Care Unit staff Unit still asked if they could take my ogans for transplants.  My son, wife and daughters told them "NO TRANSPLANTING, he stll needs them."  My son knows his stuff and knew my chances were slim.  He is a fighter and knows I am to.  After 5 days they finally operated on my head and kept me on machines for over a month.  They even started up my targeted chemo while I was out of it.  My son made them talk to my Virginia Oncolgist since the hospital staff had never heard of my chmo being used for melanoma.  (Targeted c-kit drugs.)

                              Tell the hospital that fighters fight, for them not to wimp out on your Dad.

                                Banu
                                Participant

                                  Hi Jerry,

                                  Thank you for putting a big smile on my face when I most needed it. What a story. I am so happy that you recovered from the horse accident and so proud of you for fighting with a champion spirit.

                                  Last night, I was feeling defeated. Tonight, I feel strong and motivated. Thanks to you and Michelle and everyone who is so generous with their support.

                                  Banu
                                  Participant

                                    Hi Jerry,

                                    Thank you for putting a big smile on my face when I most needed it. What a story. I am so happy that you recovered from the horse accident and so proud of you for fighting with a champion spirit.

                                    Last night, I was feeling defeated. Tonight, I feel strong and motivated. Thanks to you and Michelle and everyone who is so generous with their support.

                                  JerryfromFauq
                                  Participant

                                    This is why I am leary of having a Living Will. Would this eliminate extra efforts to bring me back from things like my dying in a horse accident last August.  My wife was afraid they would pull this line.  As it was my son, a Paramedic from Fla flew up and while (after being told I was stage IV melanoma,) the Neurological Intnsive Care Unit staff Unit still asked if they could take my ogans for transplants.  My son, wife and daughters told them "NO TRANSPLANTING, he stll needs them."  My son knows his stuff and knew my chances were slim.  He is a fighter and knows I am to.  After 5 days they finally operated on my head and kept me on machines for over a month.  They even started up my targeted chemo while I was out of it.  My son made them talk to my Virginia Oncolgist since the hospital staff had never heard of my chmo being used for melanoma.  (Targeted c-kit drugs.)

                                    Tell the hospital that fighters fight, for them not to wimp out on your Dad.

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