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Lung Nodules … NED for 3 yrs, nervous …

Forums General Melanoma Community Lung Nodules … NED for 3 yrs, nervous …

  • Post
    justzack
    Participant

      I am new to the board, so excuse my posting ettiquette :0)  I had a 1.55 Melnoma, Clarks IV on my right infamammary (under right breast, chest wall).  WLE and SLNB was performed by Dr.

      I am new to the board, so excuse my posting ettiquette :0)  I had a 1.55 Melnoma, Clarks IV on my right infamammary (under right breast, chest wall).  WLE and SLNB was performed by Dr. Zaeger at Moffitt in Tampa.  Ongoing health issues – unexplained hypertensive crisis', tachycardia, sever skin flushing, facial swelling, massive headches, multiple admissions and ICU stays, unexplained acute renal failure in april 2010.  Last month, I had a case of pneumonia and xray showed possible lung nodules ot right lung and medastinal shift with enlarged heart, thyroid, and liver.  In prior scans in April, no evidence of what is now showing on scans.  Primary Care doc ordered Thoracic Ct Scan.  Impression results:  3 calcified lung nodules that appear to be granulomatas and 3 non-calcified lung nodules, that are not specific.  Recommendation to follow-up with oncologist due to patient history and possible metastasis.  The non-calcified nodules are very small 2-3 mm.  My chief complaints right now are severe back and chest pain, that gets worse when I lie down.  Minimal coughing that produces no sputum.  Weightloss of 22 lbs this month, but still eating … big girl so not really worried, but just unsually – was on weight watchers for 18 months recently and couldn't lose more than 15 lbs due to major fluid and swelling of face and stomach.  All of this to say … we are at a loss, we are fearful the NED Badge will no longer be mine to wear.  I have an appointment on Monday, January 28th with Dr. Zaeger at Moffitt, he has read the report, but not seen the films.  He advised his nurse that he wants to see me soon.  The appointment was scheduled for first available, just a week and a half from the date we notified them … unheard of at Moffitt ;0), but really welcomed.

      So my question to all, does anyone have experience with lung mets, how small or big were they, what were your symptoms, what are treatment options, what are biopsy options, anyone diagnosed with pneumonia – but really melanoma lung metastasis … I hav so many questions, but so glad to have everyone's guidance.

      Peace to all — Missy

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    • Replies
        lhaley
        Participant

          Missy,

          I'm so sorry you've had to join us. Sounds like you have really had some difficult health problems recently.

          I have been stage IV for about 4.5 years. Have recurrances and then surgically have come back to NED. 5 weeks ago my scans showed 2 lung nodules. When they've looked back on scans they can retrospectively see that 1 has been stable and the other has grown over the last year.  It's small, 7mm and I was told that it was too small to biopsy, too small to treat. They scheduled me for scans in 2 months – that's in about 3 weeks to see if there has been any change. I'll be interested to see if they biopsy yours at this point.  Waiting has not been fun but I have gone into my nice safe denial mode while I wait.

          I've had no symptoms but have had a cold for the past 2 weeks that seems to be taking longer to get over than normal with some coughing. My stuffy nose is the only thing that is keeping me sane!!  Many who have had lung mets have had no symptoms. I do have a friend who had an x-ray because of bronchitis for 2 months, that was when her lung mets were discovered.  I guess we are each different.

          I hope you find that these nodules are no concern. I would think that the first thing that will happen is a PET/CT scan will be ordered. It does sound like they need to get to the bottom of the different health issues you've been having.

          Please let us know the results,  sending cyber hugs,

          Linda

           

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          lhaley
          Participant

            Missy,

            I'm so sorry you've had to join us. Sounds like you have really had some difficult health problems recently.

            I have been stage IV for about 4.5 years. Have recurrances and then surgically have come back to NED. 5 weeks ago my scans showed 2 lung nodules. When they've looked back on scans they can retrospectively see that 1 has been stable and the other has grown over the last year.  It's small, 7mm and I was told that it was too small to biopsy, too small to treat. They scheduled me for scans in 2 months – that's in about 3 weeks to see if there has been any change. I'll be interested to see if they biopsy yours at this point.  Waiting has not been fun but I have gone into my nice safe denial mode while I wait.

            I've had no symptoms but have had a cold for the past 2 weeks that seems to be taking longer to get over than normal with some coughing. My stuffy nose is the only thing that is keeping me sane!!  Many who have had lung mets have had no symptoms. I do have a friend who had an x-ray because of bronchitis for 2 months, that was when her lung mets were discovered.  I guess we are each different.

            I hope you find that these nodules are no concern. I would think that the first thing that will happen is a PET/CT scan will be ordered. It does sound like they need to get to the bottom of the different health issues you've been having.

            Please let us know the results,  sending cyber hugs,

            Linda

             

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              justzack
              Participant

                Linda,

                 

                So sweet, thank you for the reply … we are hoping the nodules are nothing, it is concerning seeing 6 appear, when there ahve been none.  I am trying reall hard to determine what may be symptoms from the nodules, versus residual symptoms form the pneumonia a month ago.  It so painful when lying down, that I almost don't want to sleep.  I will definitely post when I know more … I am sure some lab work and CT/PET Scans will be ordered to determine any change from the scan a few weeks ago … we shall see.  Just hoping it really is nothing … thanks again for the positive thoughts and best of wishes to you, too — Missy

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                justzack
                Participant

                  Linda,

                   

                  So sweet, thank you for the reply … we are hoping the nodules are nothing, it is concerning seeing 6 appear, when there ahve been none.  I am trying reall hard to determine what may be symptoms from the nodules, versus residual symptoms form the pneumonia a month ago.  It so painful when lying down, that I almost don't want to sleep.  I will definitely post when I know more … I am sure some lab work and CT/PET Scans will be ordered to determine any change from the scan a few weeks ago … we shall see.  Just hoping it really is nothing … thanks again for the positive thoughts and best of wishes to you, too — Missy

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                  LynnLuc
                  Participant

                    Good Luck Missy…I am stage 4 ned and in a trial with Dr Weber at Moffitt. They treat me very good and if ever I need an appointment I get one right away. I have heard good things about your doc!

                    Take care, Lynn

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                    LynnLuc
                    Participant

                      Good Luck Missy…I am stage 4 ned and in a trial with Dr Weber at Moffitt. They treat me very good and if ever I need an appointment I get one right away. I have heard good things about your doc!

                      Take care, Lynn

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                    Rocco
                    Participant
                      Clinical Trial ParticipantNED

                      Hi Missy,

                      I'm sorry to hear that you're having these health issues right now.  I was dx'ed Stage IV in Aug 2005 (see my Patnet for all the details).  Bottom-line, my lung nodules and I had a number of them in left and right lungs.  I was always asymptomatic – no symptoms at all – no cough, no nothing.   

                      Since I had an unknown primary and the lung nodules were too small to light up on a PET scan we went for surgery/biopsy.   First lung surgery (using VATS) removed several via wedge resection  on my right lobes – this biopsy proved I was Stage IV.   After trying IL-2 (partial response) and in the midst of a trial (adoptive cell transfer) I had nodules on the left lobes removed – to prove effectiveness of that trial.  This surgery was also VATS.  Last treatment for me was Ipi Compassionate Use (trial) which I have had a great response to.

                      I hope your appointment at Moffitt gives you some answers!

                      Hang in there,

                      Rocco

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                      Rocco
                      Participant
                        Clinical Trial ParticipantNED

                        Hi Missy,

                        I'm sorry to hear that you're having these health issues right now.  I was dx'ed Stage IV in Aug 2005 (see my Patnet for all the details).  Bottom-line, my lung nodules and I had a number of them in left and right lungs.  I was always asymptomatic – no symptoms at all – no cough, no nothing.   

                        Since I had an unknown primary and the lung nodules were too small to light up on a PET scan we went for surgery/biopsy.   First lung surgery (using VATS) removed several via wedge resection  on my right lobes – this biopsy proved I was Stage IV.   After trying IL-2 (partial response) and in the midst of a trial (adoptive cell transfer) I had nodules on the left lobes removed – to prove effectiveness of that trial.  This surgery was also VATS.  Last treatment for me was Ipi Compassionate Use (trial) which I have had a great response to.

                        I hope your appointment at Moffitt gives you some answers!

                        Hang in there,

                        Rocco

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                        Sharyn
                        Participant

                          Hi Missy,

                          Sorry that you had to join us, but you've come to the best place (besides a mel specialist). :>)  I have had a lung met since early 2009. It started out small (3mm), and gradually grew. But nothing was done for the time being, mainly because I was totally asymptomatic, but also because I had other fish to fry that was more pressing (brain radiation and mastectomy). Once those issues were sufficiently resolved, I started on compassionate us ipilimumab in Sept 2010, by which time, my lung tumor had grown to 5.5 CM! Still I was aymptomatic, and there was no talk of surgery. However, I'm happy to say that after 5 months, my lung tumor has shrunk to 3.3 cm, and I hope it continues.  My point is not to blow my own horn, but to point out that even at 5.5cm, I was still asymptomatic. From what I've been told, you'd have to be very advanced before you would show symptoms of lung mets. Given your other health issues, there is probably another culprit for your chest and back pain, especially in light of your recent pneumonioa. That is not to say you should pass off your recent CT scan. Do follow up on that, and find out for sure whether these spots definitely are granulomata, and not lung mets.  Best of luck to you!

                          Hugs

                          Sharyn, Stage IV

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                          Sharyn
                          Participant

                            Hi Missy,

                            Sorry that you had to join us, but you've come to the best place (besides a mel specialist). :>)  I have had a lung met since early 2009. It started out small (3mm), and gradually grew. But nothing was done for the time being, mainly because I was totally asymptomatic, but also because I had other fish to fry that was more pressing (brain radiation and mastectomy). Once those issues were sufficiently resolved, I started on compassionate us ipilimumab in Sept 2010, by which time, my lung tumor had grown to 5.5 CM! Still I was aymptomatic, and there was no talk of surgery. However, I'm happy to say that after 5 months, my lung tumor has shrunk to 3.3 cm, and I hope it continues.  My point is not to blow my own horn, but to point out that even at 5.5cm, I was still asymptomatic. From what I've been told, you'd have to be very advanced before you would show symptoms of lung mets. Given your other health issues, there is probably another culprit for your chest and back pain, especially in light of your recent pneumonioa. That is not to say you should pass off your recent CT scan. Do follow up on that, and find out for sure whether these spots definitely are granulomata, and not lung mets.  Best of luck to you!

                            Hugs

                            Sharyn, Stage IV

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                            Carmon in NM
                            Participant

                              Hi Missy – I'm so sorry you are having to go through all of this worry and wait too! I'm stage 4 since 6/10 with two brain mets and one to my right adrenal gland. I had both a craniotomy and Gamma Knife for the brain tumors which are now considered to be scar tissue and no new ones in six months.

                              My pre-clinical drug trial full body CT scan showed a small nodule on my left lung. My onc has assured me repeatedly that 30% of all of the population will show small lung nodules and that it is too small to do anything but watch it at this point. My second scan done in December has shown that it has shrunk by quite a bit.

                              I am more than halfway through a clinical drug trail now and after two infusions the adrenal tumor had shrunk by better than 50% and both the old brain mets and that lung nodule have shrunk as well. So I can't give you much help as to what to be aware of in actual lung mets but hopefully a little assurance that hopefully all will be well for you! Carmon

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                              Carmon in NM
                              Participant

                                Hi Missy – I'm so sorry you are having to go through all of this worry and wait too! I'm stage 4 since 6/10 with two brain mets and one to my right adrenal gland. I had both a craniotomy and Gamma Knife for the brain tumors which are now considered to be scar tissue and no new ones in six months.

                                My pre-clinical drug trial full body CT scan showed a small nodule on my left lung. My onc has assured me repeatedly that 30% of all of the population will show small lung nodules and that it is too small to do anything but watch it at this point. My second scan done in December has shown that it has shrunk by quite a bit.

                                I am more than halfway through a clinical drug trail now and after two infusions the adrenal tumor had shrunk by better than 50% and both the old brain mets and that lung nodule have shrunk as well. So I can't give you much help as to what to be aware of in actual lung mets but hopefully a little assurance that hopefully all will be well for you! Carmon

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                                JewelryCrafterGirl
                                Participant

                                  Hi Missy,

                                  I see Dr. Zager at Moffitt also and am still healing from the WLE and SLNB. 

                                  I also have a nodule either on my lung or growing from the bone around the lung.  It is unknown if it is melanoma related at this time, I see Dr. Toluza at Moffitt for anther scan on Jan. 31.  Unlike you, I don't have any symptoms.

                                  You said your appointment is Monday Jan. 28.  Could it be the 24 or 31?  I'll be there most of the day on the 31, I have 3 appointments.  I live in Melbourne, (3 hour drive one way) so I have them get as much done as they can for each trip.

                                  Tak care, I wish you well~Pennie

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                                  JewelryCrafterGirl
                                  Participant

                                    Hi Missy,

                                    I see Dr. Zager at Moffitt also and am still healing from the WLE and SLNB. 

                                    I also have a nodule either on my lung or growing from the bone around the lung.  It is unknown if it is melanoma related at this time, I see Dr. Toluza at Moffitt for anther scan on Jan. 31.  Unlike you, I don't have any symptoms.

                                    You said your appointment is Monday Jan. 28.  Could it be the 24 or 31?  I'll be there most of the day on the 31, I have 3 appointments.  I live in Melbourne, (3 hour drive one way) so I have them get as much done as they can for each trip.

                                    Tak care, I wish you well~Pennie

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                                    Jim in Denver
                                    Participant

                                      Hi Missy,

                                      Like Rocco, I was diagnosed (last March) as Stage IV with lung mets, no primary identified.  One luhg "spot" showed up on a heart/lung scan I had done summer of 2009 as a former smoker.  I was referred to a Pulmonologist at a respiratory hospital (National Jewish in Denver) who had a CAT scan done that November, which served as a baseline, followed by another in February 2010, which showed the "spot" getting larger.  A needle biopsy was performed and the path report came back positive for melanoma.  The nodule was 1.2 cms across.

                                      To identify whether your nodules are melanoma, some sort of biopsy must be performed.  I recall that lung needle biopsies require a minumum size, something closer to 1 cm – ask about that.  One approach your Doc may suggest is to repeat the scan  to see if any of the nodules are growing, or more appear.  I had no symptoms at all from the lung nodules.  Go ahead and ask more questions, and I hope the posts here are helpful..  We are here to help with information and support.

                                      Best Wishes,

                                      Jim

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                                      Jim in Denver
                                      Participant

                                        Hi Missy,

                                        Like Rocco, I was diagnosed (last March) as Stage IV with lung mets, no primary identified.  One luhg "spot" showed up on a heart/lung scan I had done summer of 2009 as a former smoker.  I was referred to a Pulmonologist at a respiratory hospital (National Jewish in Denver) who had a CAT scan done that November, which served as a baseline, followed by another in February 2010, which showed the "spot" getting larger.  A needle biopsy was performed and the path report came back positive for melanoma.  The nodule was 1.2 cms across.

                                        To identify whether your nodules are melanoma, some sort of biopsy must be performed.  I recall that lung needle biopsies require a minumum size, something closer to 1 cm – ask about that.  One approach your Doc may suggest is to repeat the scan  to see if any of the nodules are growing, or more appear.  I had no symptoms at all from the lung nodules.  Go ahead and ask more questions, and I hope the posts here are helpful..  We are here to help with information and support.

                                        Best Wishes,

                                        Jim

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