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.

The results are in….

Forums General Melanoma Community The results are in….

  • Post
    snow white
    Participant

      Spent the Day with Mom and Dad at The Angeles Clinic. First things first. Dad does not have any type of fungal infection.  Sadly, he does have signs of LMD.  As I understand it, there was no melanoma in the actual fluid, but there was an elevated protein.  She feels she has enough evidence with the MRI and testing to determine that he indeed is positive for LMD.  Interestingly enough, she is not overly alarmed by it.  She said it is very very early, the size is like a grain of sand.  She feels that it is treatable.  She said "If I am worried, I will let you know and be straightforward with you", Dad said "so are you worried" and she said "no at this point I am not worried".  The plan is : Yervoy (he had his first infusion today), he will get a MRI on his spine this week, next week he will get a blood test to determine how he is doing, he also started on Thyroid meds as his thyroid is showing low and she doesn't want it to get out of control, so he will be on a very low dose.  He will get his 2nd infusion and at that time they will re-scan the brain and body to see what happening.  We are thrilled that Dad can have some of this done close to home, such as blood tests and scans.  We have all that is needed in the way of medical facilities about 7 minutes from the house, so that will be good.

      My thoughts : My stomach has been in knots since the Spinal.  Fortunately, I was able to have a private conversation with his doctor yesterday on the phone (Sunday).  I am very confident in her ability to lead us on the right path and I trust her when she says that now is not the time to worry.  Dad is doing well, and hopefully he will tolerate the news drugs.  I am going to focus on ALL of the positives and just be thankful that we found a great doctor that has our best interests at heart.  I am going to will myself to take it a day at a time, even if its the hardest thing for me to do.  Dad is alive! and I am grateful. That is  all I have for now.  I hope all of you are holding on tight, I think of you all often and am grateful for all of the support that you have given me.

      xo Jen

    Viewing 29 reply threads
    • Replies
        UBContributor
        Participant

          Thank you for update and good luck with the treatment. Seems you have a nice Dr. 

          UBContributor
          Participant

            Thank you for update and good luck with the treatment. Seems you have a nice Dr. 

            UBContributor
            Participant

              Thank you for update and good luck with the treatment. Seems you have a nice Dr. 

              Spl25
              Participant

                Thanks for sharing, and good luck with the rest of your visit at the clinic. May I ask why they tested for LMD in the first place?

                Spl25
                Participant

                  Thanks for sharing, and good luck with the rest of your visit at the clinic. May I ask why they tested for LMD in the first place?

                  Spl25
                  Participant

                    Thanks for sharing, and good luck with the rest of your visit at the clinic. May I ask why they tested for LMD in the first place?

                      snow white
                      Participant

                        On his last Brain scan they saw a very very small speck that had not been there before.  The radiologist noted it on the report and we went from there.

                        snow white
                        Participant

                          On his last Brain scan they saw a very very small speck that had not been there before.  The radiologist noted it on the report and we went from there.

                          snow white
                          Participant

                            On his last Brain scan they saw a very very small speck that had not been there before.  The radiologist noted it on the report and we went from there.

                          cancersnewnormal
                          Participant

                            Thanks for the update! Scary news… but also happy that the doc isn't worried yet, and has strong hope that this is early and treatable. Sometimes, all we need is to stretch our time to the next possible step. It is very nice that he can get scans and bloodwork near home. I do CT's and blood labs locally, then bring images and results to my docs in LA. It's kind of a benefit to have two sets of radiologists reading over things. Best wishes for a successful and uneventful course of Ipi!

                            cancersnewnormal
                            Participant

                              Thanks for the update! Scary news… but also happy that the doc isn't worried yet, and has strong hope that this is early and treatable. Sometimes, all we need is to stretch our time to the next possible step. It is very nice that he can get scans and bloodwork near home. I do CT's and blood labs locally, then bring images and results to my docs in LA. It's kind of a benefit to have two sets of radiologists reading over things. Best wishes for a successful and uneventful course of Ipi!

                              cancersnewnormal
                              Participant

                                Thanks for the update! Scary news… but also happy that the doc isn't worried yet, and has strong hope that this is early and treatable. Sometimes, all we need is to stretch our time to the next possible step. It is very nice that he can get scans and bloodwork near home. I do CT's and blood labs locally, then bring images and results to my docs in LA. It's kind of a benefit to have two sets of radiologists reading over things. Best wishes for a successful and uneventful course of Ipi!

                                  snow white
                                  Participant

                                    Thanks Niki.  Feeling some relief today, but still feel "uptight".  Hoping that feeling goes away soon.  So far Dad is feeling fine after his infusion of ipi.  Thanks for your continued support.

                                    xo Jen

                                    snow white
                                    Participant

                                      Thanks Niki.  Feeling some relief today, but still feel "uptight".  Hoping that feeling goes away soon.  So far Dad is feeling fine after his infusion of ipi.  Thanks for your continued support.

                                      xo Jen

                                      snow white
                                      Participant

                                        Thanks Niki.  Feeling some relief today, but still feel "uptight".  Hoping that feeling goes away soon.  So far Dad is feeling fine after his infusion of ipi.  Thanks for your continued support.

                                        xo Jen

                                      Jahendry12
                                      Participant

                                        Thanks for the update.  Sounds like you are in good hands and having confidence in your doctor is key.  Good for you to for willing yourself to take one day at a time and no look too far ahead.  I, myeslf, have a hard time with that and am working on it.

                                        Praying for your family and please keep us posted.

                                        Jahendry12
                                        Participant

                                          Thanks for the update.  Sounds like you are in good hands and having confidence in your doctor is key.  Good for you to for willing yourself to take one day at a time and no look too far ahead.  I, myeslf, have a hard time with that and am working on it.

                                          Praying for your family and please keep us posted.

                                          Jahendry12
                                          Participant

                                            Thanks for the update.  Sounds like you are in good hands and having confidence in your doctor is key.  Good for you to for willing yourself to take one day at a time and no look too far ahead.  I, myeslf, have a hard time with that and am working on it.

                                            Praying for your family and please keep us posted.

                                              snow white
                                              Participant

                                                taking it a day at a time is such hard work, some days I am better at it then others!  Thank you for the prayers!

                                                Jen

                                                snow white
                                                Participant

                                                  taking it a day at a time is such hard work, some days I am better at it then others!  Thank you for the prayers!

                                                  Jen

                                                  snow white
                                                  Participant

                                                    taking it a day at a time is such hard work, some days I am better at it then others!  Thank you for the prayers!

                                                    Jen

                                                  Polymath
                                                  Participant

                                                    Hi Jen,

                                                    Thanks for the update on Dad.  When I think back on when you first came on the board, you were wracked with fear and anxiety.  Now you are calmly forging ahead, helping to get Dad the best care possible and with wonderful results even if he is not out of the woods yet.  You go girl.  You really do have this.

                                                    Gary

                                                    Polymath
                                                    Participant

                                                      Hi Jen,

                                                      Thanks for the update on Dad.  When I think back on when you first came on the board, you were wracked with fear and anxiety.  Now you are calmly forging ahead, helping to get Dad the best care possible and with wonderful results even if he is not out of the woods yet.  You go girl.  You really do have this.

                                                      Gary

                                                      Polymath
                                                      Participant

                                                        Hi Jen,

                                                        Thanks for the update on Dad.  When I think back on when you first came on the board, you were wracked with fear and anxiety.  Now you are calmly forging ahead, helping to get Dad the best care possible and with wonderful results even if he is not out of the woods yet.  You go girl.  You really do have this.

                                                        Gary

                                                          snow white
                                                          Participant

                                                            Thanks for that reminder Gary. I guess I am more calm about things, a good part thanks to people like you on this board.  I will be forever grateful for the guidance that I receive her and the continued reassurance. How are you feeling?  Whats the latest?

                                                            xo Jen

                                                            snow white
                                                            Participant

                                                              Thanks for that reminder Gary. I guess I am more calm about things, a good part thanks to people like you on this board.  I will be forever grateful for the guidance that I receive her and the continued reassurance. How are you feeling?  Whats the latest?

                                                              xo Jen

                                                              snow white
                                                              Participant

                                                                Thanks for that reminder Gary. I guess I am more calm about things, a good part thanks to people like you on this board.  I will be forever grateful for the guidance that I receive her and the continued reassurance. How are you feeling?  Whats the latest?

                                                                xo Jen

                                                              Scooby123
                                                              Participant
                                                                So pleased you have got answers and treatment sorted.keep strong
                                                                Scooby x
                                                                Scooby123
                                                                Participant
                                                                  So pleased you have got answers and treatment sorted.keep strong
                                                                  Scooby x
                                                                  Scooby123
                                                                  Participant
                                                                    So pleased you have got answers and treatment sorted.keep strong
                                                                    Scooby x
                                                                    keepthefaith11
                                                                    Participant
                                                                      Jen, right now, just focus on today. The doctor said they are not worried at this point, rest in that. We really cannot go through this process thinking and worrying about everything that could happen. I find myself stepping back and forth between two buckets. One is my dad’s disease, the other is the life I live with my family. I cannot stand with one foot in each all day everyday. I have to switch between the two so that I can make sure I am enjoying my young children growing up. I love my dad with all my heart but I also do not want to look back on this time of my life and feel like I missed the joy that my children bring. You are an amazing advocate and very proactive in your dad’s treatment. You are doing absolutely everything you can. Keep us updated.

                                                                      Annie

                                                                      keepthefaith11
                                                                      Participant
                                                                        Jen, right now, just focus on today. The doctor said they are not worried at this point, rest in that. We really cannot go through this process thinking and worrying about everything that could happen. I find myself stepping back and forth between two buckets. One is my dad’s disease, the other is the life I live with my family. I cannot stand with one foot in each all day everyday. I have to switch between the two so that I can make sure I am enjoying my young children growing up. I love my dad with all my heart but I also do not want to look back on this time of my life and feel like I missed the joy that my children bring. You are an amazing advocate and very proactive in your dad’s treatment. You are doing absolutely everything you can. Keep us updated.

                                                                        Annie

                                                                        keepthefaith11
                                                                        Participant
                                                                          Jen, right now, just focus on today. The doctor said they are not worried at this point, rest in that. We really cannot go through this process thinking and worrying about everything that could happen. I find myself stepping back and forth between two buckets. One is my dad’s disease, the other is the life I live with my family. I cannot stand with one foot in each all day everyday. I have to switch between the two so that I can make sure I am enjoying my young children growing up. I love my dad with all my heart but I also do not want to look back on this time of my life and feel like I missed the joy that my children bring. You are an amazing advocate and very proactive in your dad’s treatment. You are doing absolutely everything you can. Keep us updated.

                                                                          Annie

                                                                          Bubbles
                                                                          Participant

                                                                            Sorry, Jen.  Hang in there.  Melanoma is not for sissies!  Not the patient, nor their families.  Love ,c

                                                                            Bubbles
                                                                            Participant

                                                                              Sorry, Jen.  Hang in there.  Melanoma is not for sissies!  Not the patient, nor their families.  Love ,c

                                                                              Bubbles
                                                                              Participant

                                                                                Sorry, Jen.  Hang in there.  Melanoma is not for sissies!  Not the patient, nor their families.  Love ,c

                                                                                debwray
                                                                                Participant

                                                                                  Hi Jen,

                                                                                  Sorry the news was not better..but looks like the treatment plan remains good and they are not putting your Dad through more spinal taps that change little.

                                                                                  It is hard to get your head round counting your blessings on this journey..but if you can it makes the travel more pleasant.

                                                                                  My latest scan showed progression.. But only 2 doses in on IPI nivo when scanned and after 6 weeks of steroids. Your Dad may tolerate IPI really well but dose 3 has had me itching like crazy on spite of anti histamines and 5mg a day of prednisolone. The rash seems to flare in the evening especially on my chest. It looks like I have been in the sun all day in a v necked t shirt and got sun burnt.

                                                                                  Hope all goes well for you. Like the sound of this new doctor and hope she has your parents confidence too. It makes a real difference especially when things are difficult.

                                                                                  Love from Deb

                                                                                  Xx

                                                                                  debwray
                                                                                  Participant

                                                                                    Hi Jen,

                                                                                    Sorry the news was not better..but looks like the treatment plan remains good and they are not putting your Dad through more spinal taps that change little.

                                                                                    It is hard to get your head round counting your blessings on this journey..but if you can it makes the travel more pleasant.

                                                                                    My latest scan showed progression.. But only 2 doses in on IPI nivo when scanned and after 6 weeks of steroids. Your Dad may tolerate IPI really well but dose 3 has had me itching like crazy on spite of anti histamines and 5mg a day of prednisolone. The rash seems to flare in the evening especially on my chest. It looks like I have been in the sun all day in a v necked t shirt and got sun burnt.

                                                                                    Hope all goes well for you. Like the sound of this new doctor and hope she has your parents confidence too. It makes a real difference especially when things are difficult.

                                                                                    Love from Deb

                                                                                    Xx

                                                                                    debwray
                                                                                    Participant

                                                                                      Hi Jen,

                                                                                      Sorry the news was not better..but looks like the treatment plan remains good and they are not putting your Dad through more spinal taps that change little.

                                                                                      It is hard to get your head round counting your blessings on this journey..but if you can it makes the travel more pleasant.

                                                                                      My latest scan showed progression.. But only 2 doses in on IPI nivo when scanned and after 6 weeks of steroids. Your Dad may tolerate IPI really well but dose 3 has had me itching like crazy on spite of anti histamines and 5mg a day of prednisolone. The rash seems to flare in the evening especially on my chest. It looks like I have been in the sun all day in a v necked t shirt and got sun burnt.

                                                                                      Hope all goes well for you. Like the sound of this new doctor and hope she has your parents confidence too. It makes a real difference especially when things are difficult.

                                                                                      Love from Deb

                                                                                      Xx

                                                                                      _Paul_
                                                                                      Participant

                                                                                        Hi Jen,

                                                                                        Thank God the waiting is over. It's not exactly the report that we have all been hoping for, but nevertheless sounds quite hopeful given that his doctor is not worried. As far as I can tell he is at a top-notch place, and receiving top-notch care. It would be great if there were an open-and-shut answer here but this type of answer is quite common. The way I look at it is "just keep me alive until the next lastest and greatest thing shows up." And fortunately in the melanoma world, which receives so much research, this is not an unrealistic hope.

                                                                                        Continuing to wish you all the best – Paul

                                                                                        _Paul_
                                                                                        Participant

                                                                                          Hi Jen,

                                                                                          Thank God the waiting is over. It's not exactly the report that we have all been hoping for, but nevertheless sounds quite hopeful given that his doctor is not worried. As far as I can tell he is at a top-notch place, and receiving top-notch care. It would be great if there were an open-and-shut answer here but this type of answer is quite common. The way I look at it is "just keep me alive until the next lastest and greatest thing shows up." And fortunately in the melanoma world, which receives so much research, this is not an unrealistic hope.

                                                                                          Continuing to wish you all the best – Paul

                                                                                          _Paul_
                                                                                          Participant

                                                                                            Hi Jen,

                                                                                            Thank God the waiting is over. It's not exactly the report that we have all been hoping for, but nevertheless sounds quite hopeful given that his doctor is not worried. As far as I can tell he is at a top-notch place, and receiving top-notch care. It would be great if there were an open-and-shut answer here but this type of answer is quite common. The way I look at it is "just keep me alive until the next lastest and greatest thing shows up." And fortunately in the melanoma world, which receives so much research, this is not an unrealistic hope.

                                                                                            Continuing to wish you all the best – Paul

                                                                                              snow white
                                                                                              Participant

                                                                                                Thanks Paul, you are right, its not the news we had hoped for, but we are grateful that we are receiving great care. Dad just keeps plugging along, he is a pretty positive guy in general, so that helps a lot.  I am hoping you made it home for a good rest and that they can get you signed up for the trial ASAP.  

                                                                                                Wishing you well always!  xo Jen

                                                                                                snow white
                                                                                                Participant

                                                                                                  Thanks Paul, you are right, its not the news we had hoped for, but we are grateful that we are receiving great care. Dad just keeps plugging along, he is a pretty positive guy in general, so that helps a lot.  I am hoping you made it home for a good rest and that they can get you signed up for the trial ASAP.  

                                                                                                  Wishing you well always!  xo Jen

                                                                                                  snow white
                                                                                                  Participant

                                                                                                    Thanks Paul, you are right, its not the news we had hoped for, but we are grateful that we are receiving great care. Dad just keeps plugging along, he is a pretty positive guy in general, so that helps a lot.  I am hoping you made it home for a good rest and that they can get you signed up for the trial ASAP.  

                                                                                                    Wishing you well always!  xo Jen

                                                                                              Viewing 29 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.