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.

Sub-Q’s/Fever/Aches

Forums General Melanoma Community Sub-Q’s/Fever/Aches

  • Post
    SandraDee
    Participant

      Hi MPIP friends:

      Again, this is Sandy – Buffalo, stage IV and battling for the past 3 1/2 years.

      To recap, mel has traveled now to my small intestine (has been in lung since original dx).  I am anticipating surgery THIS WEEK for sm. intestine, as the symptoms have been constant….fever, pain, and now 4 sub-q's, all of which have "popped up" in the last 2 weeks.  Darvasat is my new "best friend", every 4 hours.  Otherwise, I am flat out on the couch.

      Hi MPIP friends:

      Again, this is Sandy – Buffalo, stage IV and battling for the past 3 1/2 years.

      To recap, mel has traveled now to my small intestine (has been in lung since original dx).  I am anticipating surgery THIS WEEK for sm. intestine, as the symptoms have been constant….fever, pain, and now 4 sub-q's, all of which have "popped up" in the last 2 weeks.  Darvasat is my new "best friend", every 4 hours.  Otherwise, I am flat out on the couch.

      After having the capsule endocscopy canceled late last month, I did then go onto having an upper GI series and upper GI scope.  Both confirmed a "large mass" on the intestine.  This wasn't enough to prompt immediate surgery, and I've been held off much longer than I would have prefered.  Last week I was told that the #1 surgeon could not slot me in until 10/27….I couldn't fathom letting it go that much longer.  I will "see" another surgeon at the same facility tomorrow (very highly recommended), and am hoping and praying for surgery on Tuesday.  I have been told that I should have no false hope….that the surgery alone will most likely NOT relieve my symptoms.  It WILL, however, put an end to my hemoglobin being in the 7-9 range, which is very exhausting.  I've had 6 units of blood transfused thus far.

      My struggle (well, the hardest 1) is in actually waking up and wondering if there are any new sub-q's, or if the ones present have grown overnight, which they tend to do.  It's so hard to even want to look and feel my body, for fear of what I will find each day.  Mentally, I keep telling myself that at least they are popping up, and not traveling to yet another organ.  But, when you can see what's happening on the outside, it's hard to think the same isn't happening on the inside. 

      I am scheduled for a C Scan tomorrow afternoon, and a PET in the next few weeks.  Do I even want to know the results of my CScan prior to my surgery, or will it just bring me more anxiety? 

      I am anticipating getting through surgery, having my blood work get back in order, and then proceeding with a systemic treatment.  My thought is Temodar ASAP after surgery and then ipi just as soon as I get the green light.  Of course, the intestinal issue needs to be 100% resolved before I could begin the ipi.  I am also awaiting test results of BRAF.  BRAF of course  has some great results, but the return with a vengence aspect doesn't set well with me.

      So, what am I looking for here?  Prayers are so appreciated, of course, as are your opinions.  I'm telling you, Amy Busby is my rock right now.  To watch her fight on and on is simply amazing.  I know it has a lot to do with her strong faith.

      Blessings to all of you! 

      Sandy – Buffalo

      Loading spinner
    Viewing 13 reply threads
    • Replies
        King
        Participant

          Sandy,

          I hope you know that you remain in my thoughts and prayers.  I hope, too, that your surgery can be done on Tuesday (i hope you are already penciled in on the schedule).  I don't quite understand why they don't think the surgery will relieve your symptoms,  Yes, of course, you will have post-operative pain but other than that, I don't get it.

           

          I'm going to think only positive thoughts.  And, I agree, Amy is so amazing.

           

          Know that we are here for you.  I'd want to know the CT results but of course, that's a personal choice.  

           

          (((Sandy)))

           

          Stay Strong
          Kathie

          Loading spinner
          King
          Participant

            Sandy,

            I hope you know that you remain in my thoughts and prayers.  I hope, too, that your surgery can be done on Tuesday (i hope you are already penciled in on the schedule).  I don't quite understand why they don't think the surgery will relieve your symptoms,  Yes, of course, you will have post-operative pain but other than that, I don't get it.

             

            I'm going to think only positive thoughts.  And, I agree, Amy is so amazing.

             

            Know that we are here for you.  I'd want to know the CT results but of course, that's a personal choice.  

             

            (((Sandy)))

             

            Stay Strong
            Kathie

            Loading spinner
            BethA in VA
            Participant

              Hi Sandy.   I don't have advice…but I want you to know you are in my prayers.  I wish you a peaceful and informative CT Scan tomorrow.  (I always place myself on a cruise ship while my scans happen!  It keeps me calm.)  I want to know the results and not feel like I'm in the dark, but do whatever brings you calm.  Keep us informed.  I hope you are feeling better very soon.  Prayers go with you into your testing and surgery.  Beth 3/B

              Loading spinner
              BethA in VA
              Participant

                Hi Sandy.   I don't have advice…but I want you to know you are in my prayers.  I wish you a peaceful and informative CT Scan tomorrow.  (I always place myself on a cruise ship while my scans happen!  It keeps me calm.)  I want to know the results and not feel like I'm in the dark, but do whatever brings you calm.  Keep us informed.  I hope you are feeling better very soon.  Prayers go with you into your testing and surgery.  Beth 3/B

                Loading spinner
                bill58
                Participant

                  Sandy,

                  Healing thoughts and prayers going out your way.  Good luck with the Surgery.  I hope it helps.

                  I know what you are going through with the subq's.  Mine started popping up about 1 month ago.  My onc said they were not too bad and that some people had golf ball and larger subq.  I guess that was somewhat good news since mind are not that big, yet/.  But it is still hard to see new ones pop up overnight and other ones get bigger.

                  I am scheduled to start the BRAF treatment on November 1.  I hope it helps and if and when it stops working that they do not come back with a vengeance, more like a whimper.  But none of can control that.  We just have to try to remain strong in the fight against this beast and hope that the current treatment or the one after that will offer some relief or NED.

                  I ran into someone a few weeks ago at Will's funeral who was diagnosed stage IV a few years ago.  She had lots of internal mel in many organs.  She did all of the standard chemo, ipi and other treatments.  The doctors were going to do surgery but her internal organs were too covered for them to operate.  She went through one more round of Ipi and had all of the published side effects and then some.  Long story short, she is now NED for several years.  There are quite a few people on this board who are stage IV and are NED so I am hoping to be able to join that club one of these days.

                  Good luck.

                  Bill

                  Loading spinner
                  bill58
                  Participant

                    Sandy,

                    Healing thoughts and prayers going out your way.  Good luck with the Surgery.  I hope it helps.

                    I know what you are going through with the subq's.  Mine started popping up about 1 month ago.  My onc said they were not too bad and that some people had golf ball and larger subq.  I guess that was somewhat good news since mind are not that big, yet/.  But it is still hard to see new ones pop up overnight and other ones get bigger.

                    I am scheduled to start the BRAF treatment on November 1.  I hope it helps and if and when it stops working that they do not come back with a vengeance, more like a whimper.  But none of can control that.  We just have to try to remain strong in the fight against this beast and hope that the current treatment or the one after that will offer some relief or NED.

                    I ran into someone a few weeks ago at Will's funeral who was diagnosed stage IV a few years ago.  She had lots of internal mel in many organs.  She did all of the standard chemo, ipi and other treatments.  The doctors were going to do surgery but her internal organs were too covered for them to operate.  She went through one more round of Ipi and had all of the published side effects and then some.  Long story short, she is now NED for several years.  There are quite a few people on this board who are stage IV and are NED so I am hoping to be able to join that club one of these days.

                    Good luck.

                    Bill

                    Loading spinner
                    Sharyn
                    Participant

                      My dear Sandy,

                      I totally understand how difficult it is to be in Limbo like this. Just because you're getting a lot of sub-qs doesn't necessarily mean the same is happening in your organs. And even if you have to wait till Oct 27 for surgery, that's only a week away, and not much growth will happen in a week. But I do hope you can get surgery sooner, if only to give you peace of mind. Before I started Ipi last month, I had expected to start it in July, but one delay led to another, so I ended up waiting almost 3 months. I know it's weighing heavy on your mind, but you have to try to keep thinking positive thoughts. As for your low hemoglobin, mine was at 7.3, and after a transfusion of 2 units, it went back up to 11.2. But to maintain it, my Dr put me on an iron supplement, Ferrous Glucomate, and my hemoglobin has been fine ever since, as well as my energy level. Are you taking an iron supplement? If not, maybe you should ask for it. I agree that Ipi may be ill-advised given your intestinal issues, but Temodar is a very tolerable treatment. Of course, I'm sending prayers and lots of Newfie good luck, and look forward to your good news updates.

                      Hugs

                      Sharyn

                      Stage IV

                      WLE, SNB, ILP, LND, PV-10, Hysterectomy, GM-CSF, WBR, Temodar, BRAF negative, SRS Mastectomy, Ipi

                      Loading spinner
                      Sharyn
                      Participant

                        My dear Sandy,

                        I totally understand how difficult it is to be in Limbo like this. Just because you're getting a lot of sub-qs doesn't necessarily mean the same is happening in your organs. And even if you have to wait till Oct 27 for surgery, that's only a week away, and not much growth will happen in a week. But I do hope you can get surgery sooner, if only to give you peace of mind. Before I started Ipi last month, I had expected to start it in July, but one delay led to another, so I ended up waiting almost 3 months. I know it's weighing heavy on your mind, but you have to try to keep thinking positive thoughts. As for your low hemoglobin, mine was at 7.3, and after a transfusion of 2 units, it went back up to 11.2. But to maintain it, my Dr put me on an iron supplement, Ferrous Glucomate, and my hemoglobin has been fine ever since, as well as my energy level. Are you taking an iron supplement? If not, maybe you should ask for it. I agree that Ipi may be ill-advised given your intestinal issues, but Temodar is a very tolerable treatment. Of course, I'm sending prayers and lots of Newfie good luck, and look forward to your good news updates.

                        Hugs

                        Sharyn

                        Stage IV

                        WLE, SNB, ILP, LND, PV-10, Hysterectomy, GM-CSF, WBR, Temodar, BRAF negative, SRS Mastectomy, Ipi

                        Loading spinner
                        James from Sydney
                        Participant

                          Hi Sandy

                          i am hoping you are BRAF positive it seems to get almost immediate results in some.  When you are again stable or improving then Ippi sounds logical. I am sending you lots of positive energy.

                          best wishes

                          James

                          Loading spinner
                          James from Sydney
                          Participant

                            Hi Sandy

                            i am hoping you are BRAF positive it seems to get almost immediate results in some.  When you are again stable or improving then Ippi sounds logical. I am sending you lots of positive energy.

                            best wishes

                            James

                            Loading spinner
                            MaryD
                            Participant

                              Hi Sandy,

                              First of all, I'm so sorry you're going through all this and you are in my thoughts and prayers!   Secondly, I'm with Kathie on this as I don't know why they would think the surgery wouldn't offer some relief but no matter what, it can't come soon enough.

                              Keeping my fingers crossed that it will happen asap so you can get on top of this.  Definately keep your mind and heart open to all the options – and while I know there are stories about the the melanoma coming back aggressively after Braf treatments, there are good new scenarios out there too so if you are positive for the mutation, it's something to think about.

                              We are all supporting you and sending lots of love and hugs to you during this challenging time!!

                              Mary

                               

                              Loading spinner
                              MaryD
                              Participant

                                Hi Sandy,

                                First of all, I'm so sorry you're going through all this and you are in my thoughts and prayers!   Secondly, I'm with Kathie on this as I don't know why they would think the surgery wouldn't offer some relief but no matter what, it can't come soon enough.

                                Keeping my fingers crossed that it will happen asap so you can get on top of this.  Definately keep your mind and heart open to all the options – and while I know there are stories about the the melanoma coming back aggressively after Braf treatments, there are good new scenarios out there too so if you are positive for the mutation, it's something to think about.

                                We are all supporting you and sending lots of love and hugs to you during this challenging time!!

                                Mary

                                 

                                Loading spinner
                                Jim M.
                                Participant

                                  Hi Sandy,

                                   I don't have any advice other than going on Ipi. You are in my thoughts and prayers. Write me anytime.

                                   God Bless, my friend,

                                   Jim M.

                                  Loading spinner
                                  Jim M.
                                  Participant

                                    Hi Sandy,

                                     I don't have any advice other than going on Ipi. You are in my thoughts and prayers. Write me anytime.

                                     God Bless, my friend,

                                     Jim M.

                                    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.