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Support please for a scared caregiver…also questions about FNBs….

Forums Caregiver Community Support please for a scared caregiver…also questions about FNBs….

  • Post
    shellebrownies
    Participant

      Hello again, all.

      Just looking for some support today, as I am feeling overwhelmed and scared. My husband Don is undergoing what we hope to be the last round of tests before a treatment plan is decided upon. He goes in to Dana Farber tomorrow for a fine needle biopsy of a suspected met in his liver needed to confirm the Stage IV diagnosis.

      Hello again, all.

      Just looking for some support today, as I am feeling overwhelmed and scared. My husband Don is undergoing what we hope to be the last round of tests before a treatment plan is decided upon. He goes in to Dana Farber tomorrow for a fine needle biopsy of a suspected met in his liver needed to confirm the Stage IV diagnosis.

      First, I am just find myself worrying about every last ache and pain he has now. The large difference in the progession of his disease between the April 6th and his April 29th PET scans really has me worried about how quickly the melanoma is spreading. (April 6th scan showed more lymph nodes near the incision site that still had cancer and an area of concern on the left side of his neck near the thyroid gland. April 29th scan showed increased growth of infected lymph nodes as well as 2 small nodules in right lung (too small to categorize as cancer at time of scan), scattered areas on both lobes of his liver, and bone lesions on the left humerus, left ilium, left femur, right and left posterior ischium, right acetabulum, sacrum, spinous process of L5, vertebral bodies L2, L3, L4, the left 7th rib, the manubrium and the body of the sternum. Taken from report.)

      The doctors made it sound like none of these areas were very large in size, yet that seems to me like an awful lot of spread in 3 weeks. And here we are waiting *another* 3 weeks before we begin treatment. I don't know what to expect; I don't know how to tell when a cough is just a cough and when it's a symptom, when aching is just sleeping wrong and when it's a symptom. I'm just so scared that the necessary time these tests are taking are making Don so much worse that any treatment he gets won't work. Or perhaps I should say that if the 1st treatment he gets he is not a responder to, I don't know how much time he will have to successfully try another.

      Perhaps I'm over-reacting (I know I probably am) but I am afraid of making wrong decisions that ultimately affect Don's prognosis.

       

      Also, questions about the FNB he's supposed to be getting tomorrow… How does that work? What is the probability they will miss the tumor site and have to repeat the procedure? The very LAST thing we want is after waiting a week for the results is to have to repeat it and wait that much longer for treatment. What should we know/expect about the FNB?

      Thanks for all your input and support!

      Michelle

    Viewing 9 reply threads
    • Replies
        dawn dion
        Participant

          Hello Michelle

          First let me say I am keeping you in my thoughts today.  I would be very anxious also,  I am kind of new to the stage IV game myself and believe me I have gone through all of the same fears about the aches, pains and coughs – I think after awhile you just know – you know in the back of your mind what is right and what isn't. 

          The waiting that you go through for all the red tape of the trials and "wash out" periods can be almost painful.  As difficult as it can be try focus elsewhere.  The losing sleep that you are going through is not good for you and won't do him any good – again been there done that, it's not fun.  If you have kids, it makes it very hard to function.

          As far as the FNB goes…from my experience, piece of cake.  Trust me they won't miss.  They monitor every move they make while doing it.  He will go in and out of the CT machine numerous times so that they can make sure they are exactly where they need to be.

          Let us know how your days goes.  Again I will be thinking of you. 

          Hugs and Smiles

          Dawn

           

           

            shellebrownies
            Participant

              Thanks, Dawn.

              I'm glad to hear that they actually check with the CT as they are doing the procedure. That makes me feel much more confident in what they are doing.

              Thank you for keeping me in your thoughts and prayers. I can certainly use it today. : )

               

              Michelle

              dawn dion
              Participant

                Don't worry to much about the pain – he really shouldn't have any – the drug they give him in my opinon they should hand out like candy – the world would be a much happier place(haha 🙂   They will make him hang around for a bit afterwards just to monitor him – the only after effects I had after was a bruise where they inserted the needle. 

                dawn dion
                Participant

                  Don't worry to much about the pain – he really shouldn't have any – the drug they give him in my opinon they should hand out like candy – the world would be a much happier place(haha 🙂   They will make him hang around for a bit afterwards just to monitor him – the only after effects I had after was a bruise where they inserted the needle. 

                  shellebrownies
                  Participant

                    Thanks, Dawn.

                    I'm glad to hear that they actually check with the CT as they are doing the procedure. That makes me feel much more confident in what they are doing.

                    Thank you for keeping me in your thoughts and prayers. I can certainly use it today. : )

                     

                    Michelle

                  dawn dion
                  Participant

                    Hello Michelle

                    First let me say I am keeping you in my thoughts today.  I would be very anxious also,  I am kind of new to the stage IV game myself and believe me I have gone through all of the same fears about the aches, pains and coughs – I think after awhile you just know – you know in the back of your mind what is right and what isn't. 

                    The waiting that you go through for all the red tape of the trials and "wash out" periods can be almost painful.  As difficult as it can be try focus elsewhere.  The losing sleep that you are going through is not good for you and won't do him any good – again been there done that, it's not fun.  If you have kids, it makes it very hard to function.

                    As far as the FNB goes…from my experience, piece of cake.  Trust me they won't miss.  They monitor every move they make while doing it.  He will go in and out of the CT machine numerous times so that they can make sure they are exactly where they need to be.

                    Let us know how your days goes.  Again I will be thinking of you. 

                    Hugs and Smiles

                    Dawn

                     

                     

                    Carol Taylor
                    Participant

                      Michelle,

                      Because I'm 3b and haven't ventured into IV territiory, I can't offer input like Dawn, but you & Don have my prayer & moral support.  Keep your anxiety under control.  Sure, it's normal, you love the guy!  Remember, you're a warrior too in this, it's just your battle plan is in support of Don't battle plan and you both need for you to keep it together.

                      You can do this. You have to. You know in your mind what your alternatives look like, so don't go there. Hang on and do what you & Don have to do. You can! You've come this far and there's no backing out now.

                      Keep a clear head & support Don. You'll have to make decisions and they necessitate a clear head. And you'll just have to make the best choices you can at the time.

                      Lord, in Your mercy, show mercy today to Don and Michelle. Guide them in decisions they must make. Open doors that need opening. Be present in this situation and hold them close. Amen.

                      Grace and much peace to you Friend,

                      Carol

                        shellebrownies
                        Participant

                          Thanks for the moral support, Carol!

                          I do try to stay strong and focused, and most of the time that works. But it has been so much so soon (From, "I think your melanoma might have come back…" to "Yes, it is melanoma in your lymph nodes…" to "It's Stage IV metastatic Mel" in 6 weeks), that it bites me in the butt some days. Juggling everything seems easier on some days than others (yesterday, wiped me out) and knowing his condition has worsened during this process is so frustrating.

                          But, you're right, I need to put the mucking boots back on and get back in the trenches. After all, I've got inlaws coming for a visit and I still need to clean my house! 

                           

                          ; )   Michelle

                          shellebrownies
                          Participant

                            Thanks for the moral support, Carol!

                            I do try to stay strong and focused, and most of the time that works. But it has been so much so soon (From, "I think your melanoma might have come back…" to "Yes, it is melanoma in your lymph nodes…" to "It's Stage IV metastatic Mel" in 6 weeks), that it bites me in the butt some days. Juggling everything seems easier on some days than others (yesterday, wiped me out) and knowing his condition has worsened during this process is so frustrating.

                            But, you're right, I need to put the mucking boots back on and get back in the trenches. After all, I've got inlaws coming for a visit and I still need to clean my house! 

                             

                            ; )   Michelle

                          Carol Taylor
                          Participant

                            Michelle,

                            Because I'm 3b and haven't ventured into IV territiory, I can't offer input like Dawn, but you & Don have my prayer & moral support.  Keep your anxiety under control.  Sure, it's normal, you love the guy!  Remember, you're a warrior too in this, it's just your battle plan is in support of Don't battle plan and you both need for you to keep it together.

                            You can do this. You have to. You know in your mind what your alternatives look like, so don't go there. Hang on and do what you & Don have to do. You can! You've come this far and there's no backing out now.

                            Keep a clear head & support Don. You'll have to make decisions and they necessitate a clear head. And you'll just have to make the best choices you can at the time.

                            Lord, in Your mercy, show mercy today to Don and Michelle. Guide them in decisions they must make. Open doors that need opening. Be present in this situation and hold them close. Amen.

                            Grace and much peace to you Friend,

                            Carol

                            FormerCaregiver
                            Participant

                              Thanks for updating Don's profile. I understand how you are feeling with the worry that every new
                              ache and pain could be caused by melanoma. I have been through the same situation, and the only
                              thing to do is to have more tests to confirm or disprove one's suspicions. Of course, all this
                              takes time, and the waiting is certainly challenging.

                              Melamona can be very unpredictable in the way it spreads. In some cases, it can remain stable for
                              very long periods of time. However, sometimes it starts to progress without apparent reason.

                              Looking at Don's overall situation – the biggest area of concern is his liver and the possibility
                              of having mets there. If they are confirmed, his condition will have to be monitored closely.

                              I don't have any info about the FNB procedure, so I will leave it to others to comment on that.

                              Is he on any pain medications at the moment?

                              Hope this helps.

                              Frank from Australia

                              FormerCaregiver
                              Participant

                                Thanks for updating Don's profile. I understand how you are feeling with the worry that every new
                                ache and pain could be caused by melanoma. I have been through the same situation, and the only
                                thing to do is to have more tests to confirm or disprove one's suspicions. Of course, all this
                                takes time, and the waiting is certainly challenging.

                                Melamona can be very unpredictable in the way it spreads. In some cases, it can remain stable for
                                very long periods of time. However, sometimes it starts to progress without apparent reason.

                                Looking at Don's overall situation – the biggest area of concern is his liver and the possibility
                                of having mets there. If they are confirmed, his condition will have to be monitored closely.

                                I don't have any info about the FNB procedure, so I will leave it to others to comment on that.

                                Is he on any pain medications at the moment?

                                Hope this helps.

                                Frank from Australia

                                  Terra
                                  Participant

                                    Hi,

                                    I don't know how much I can offer in the way of treatment plans.  My husband and I are trying to do the same.  He was stage 3 in 2001, had surgeries, 6 years later 2 recurrances and interferon, 2 years later 2 lung surgeries and chemo, in march scans showed cancer in bones, muscle, liver, trachea, and kidney, we started a clinical trial in Toronto a month ago and he was removed from it last Thursday for increased cv levels (break down of muscle enzymes.)  Each time I have held my breath, thinking that he would be gone at any moment, and after allt his time I still feel the same when we receive bad news.  We are now scheduled to meet with our Onc this thursday to find a new trial or try ipi.  It is hard, very hard to try to keep calm, almost impossible, the only way I found to try and stay normal was to stay informed and always have the knowledge of what was being discussed the most on the board as far as promising treatments.  Derek is still here, still moving and working and after all this time I have learned to also try and stay tuned to the day and the moment (does not always work and can be exhausting but is the only thing I have). 

                                    I know it is scary, try to focus on the day, read the board, enjoy the hope and inspiration that comes from successful stories, and choose what he, you, and the onc think is the best option and move forward.  I wish you both luck and completely understand the panic, have those moments and then try to move on.

                                     

                                    Terra

                                    Terra
                                    Participant

                                      Hi,

                                      I don't know how much I can offer in the way of treatment plans.  My husband and I are trying to do the same.  He was stage 3 in 2001, had surgeries, 6 years later 2 recurrances and interferon, 2 years later 2 lung surgeries and chemo, in march scans showed cancer in bones, muscle, liver, trachea, and kidney, we started a clinical trial in Toronto a month ago and he was removed from it last Thursday for increased cv levels (break down of muscle enzymes.)  Each time I have held my breath, thinking that he would be gone at any moment, and after allt his time I still feel the same when we receive bad news.  We are now scheduled to meet with our Onc this thursday to find a new trial or try ipi.  It is hard, very hard to try to keep calm, almost impossible, the only way I found to try and stay normal was to stay informed and always have the knowledge of what was being discussed the most on the board as far as promising treatments.  Derek is still here, still moving and working and after all this time I have learned to also try and stay tuned to the day and the moment (does not always work and can be exhausting but is the only thing I have). 

                                      I know it is scary, try to focus on the day, read the board, enjoy the hope and inspiration that comes from successful stories, and choose what he, you, and the onc think is the best option and move forward.  I wish you both luck and completely understand the panic, have those moments and then try to move on.

                                       

                                      Terra

                                    boot2aboot
                                    Participant

                                      I think about you guys and Lisa…and how things are progressing…remember, you are doing everything humanly possible for good outcomes, educating yourselves, going to one of the best cancer hospitals…keeping up on testing, procedures…i just wish things would just calm down for Don a bit…give time to mull over clinical trials and other treatments-complicated stuff that you and i are trying  desperately to understand knowing fully well this is a critical time in treatment program…i worry about you Michelle, juggling doctors, family and i am sure tons of paperwork…do you have anyone to support YOU? i sincerely hope that you get a break to take a walk, or nap or pretend this isn't so…just for a little while?

                                      …i understand the paranoia of every ache, lump and pain…i myself am experiencing that as well…i just don't know what to say except i wish for a miracle…for you guys, for lisa, for all of us…

                                      boots

                                      boot2aboot
                                      Participant

                                        I think about you guys and Lisa…and how things are progressing…remember, you are doing everything humanly possible for good outcomes, educating yourselves, going to one of the best cancer hospitals…keeping up on testing, procedures…i just wish things would just calm down for Don a bit…give time to mull over clinical trials and other treatments-complicated stuff that you and i are trying  desperately to understand knowing fully well this is a critical time in treatment program…i worry about you Michelle, juggling doctors, family and i am sure tons of paperwork…do you have anyone to support YOU? i sincerely hope that you get a break to take a walk, or nap or pretend this isn't so…just for a little while?

                                        …i understand the paranoia of every ache, lump and pain…i myself am experiencing that as well…i just don't know what to say except i wish for a miracle…for you guys, for lisa, for all of us…

                                        boots

                                        King
                                        Participant

                                          Hi Michelle,

                                           

                                          I see you've received some great replies to all the normal emotions you are experiencing.

                                          I am going to answer the question about the liver biopsy.  My liver biopsy was CT guided.  I had a little bit of IV sedation but I had to be able to cooperate with deep breathing, etc.  I remember feeling pressure but not acute pain.  The interventional radiologist obtained a few samples and gave it to the pathologist who was nearby.  Within a couple of minutes, the pathologist said they had a sufficient sample.  I was lying on my left side with my right arm over my head.

                                          In the past, I have seen a few posts from people who had liver biopsies that were US (ultrasound) guided and they were given no sedation.  I would hope that Dana Farber makes the procedure as pain-free as possible for the patient.  I believe that you have the right to know what to expect and am somewhat disappointed that it hasn't been explained to you.

                                          My biopsy was done on a Thursday and we got the call on a Monday that confirmed melanoma.  We really weren't surprised…we knew it.

                                           

                                          Stay Strong

                                          King

                                          Stage IV 7/05 Liver Mets

                                            shellebrownies
                                            Participant

                                              King,

                                              We are supposed to be hearing from the nurse today to get the details. Scheduling this procedure was a rush job; I called yesterday and they got him in for tomorrow so we could get our results back before his next onco appt on the 20th.

                                              The person who scheduled the procedure said he wouldn't be able to leave for at least a couple of hours after the procedure, which definitely makes me think some kind of sedative would be used. (I think they would have to anyway…hubby is not very good around needles! lol)

                                              They are doing the procedure in the imaging center, so I imagine his will be CT guided as well. Is there any real pain or discomfort after the fact?

                                              King
                                              Participant

                                                Michelle,

                                                Good for you getting it scheduled so quickly.  I think I stayed about an hour after the procedure.  The IV sedation was "light" but they monitor the patient for bleeding, etc.

                                                I can't say there was real pain afterwards.  There was some tenderness at the site and limited activity for about 24 hours…no heavy lifting, etc.  The next day, my husband and I headed out for our 4 week road trip which we had planned prior to this met showing up on a "routine" PET/CT scan.  Your husband's case is different, of course, with several areas of concern.

                                                Hope the procedure goes smoothly.

                                                Stay Strong
                                                King

                                                King
                                                Participant

                                                  Michelle,

                                                  Good for you getting it scheduled so quickly.  I think I stayed about an hour after the procedure.  The IV sedation was "light" but they monitor the patient for bleeding, etc.

                                                  I can't say there was real pain afterwards.  There was some tenderness at the site and limited activity for about 24 hours…no heavy lifting, etc.  The next day, my husband and I headed out for our 4 week road trip which we had planned prior to this met showing up on a "routine" PET/CT scan.  Your husband's case is different, of course, with several areas of concern.

                                                  Hope the procedure goes smoothly.

                                                  Stay Strong
                                                  King

                                                  shellebrownies
                                                  Participant

                                                    King,

                                                    We are supposed to be hearing from the nurse today to get the details. Scheduling this procedure was a rush job; I called yesterday and they got him in for tomorrow so we could get our results back before his next onco appt on the 20th.

                                                    The person who scheduled the procedure said he wouldn't be able to leave for at least a couple of hours after the procedure, which definitely makes me think some kind of sedative would be used. (I think they would have to anyway…hubby is not very good around needles! lol)

                                                    They are doing the procedure in the imaging center, so I imagine his will be CT guided as well. Is there any real pain or discomfort after the fact?

                                                  King
                                                  Participant

                                                    Hi Michelle,

                                                     

                                                    I see you've received some great replies to all the normal emotions you are experiencing.

                                                    I am going to answer the question about the liver biopsy.  My liver biopsy was CT guided.  I had a little bit of IV sedation but I had to be able to cooperate with deep breathing, etc.  I remember feeling pressure but not acute pain.  The interventional radiologist obtained a few samples and gave it to the pathologist who was nearby.  Within a couple of minutes, the pathologist said they had a sufficient sample.  I was lying on my left side with my right arm over my head.

                                                    In the past, I have seen a few posts from people who had liver biopsies that were US (ultrasound) guided and they were given no sedation.  I would hope that Dana Farber makes the procedure as pain-free as possible for the patient.  I believe that you have the right to know what to expect and am somewhat disappointed that it hasn't been explained to you.

                                                    My biopsy was done on a Thursday and we got the call on a Monday that confirmed melanoma.  We really weren't surprised…we knew it.

                                                     

                                                    Stay Strong

                                                    King

                                                    Stage IV 7/05 Liver Mets

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