More bad news; having a rough day…

This topic has 26 replies, 8 voices, and was last updated 14 years, 8 months ago by shellebrownies.

Post

- May 18, 2011 at 12:34 am
- Quote
shellebrownies
Participant
And the hits just keep on comin'….

After letting the doctor know that Don has started having lower back pain, they did a new MRI of the area. Not only has the cancer spread in the bones of his spine, it has now affected the sheath surrounding the spinal cord in at least one place. This news is added to my getting the copy of Don's CT scan from the 6th that said he has "innumerable" small lesions in his liver. (These results were never told to us, thank you very much, I had to retrieve from the Patient Gateway website…)

And the hits just keep on comin'….

After letting the doctor know that Don has started having lower back pain, they did a new MRI of the area. Not only has the cancer spread in the bones of his spine, it has now affected the sheath surrounding the spinal cord in at least one place. This news is added to my getting the copy of Don's CT scan from the 6th that said he has "innumerable" small lesions in his liver. (These results were never told to us, thank you very much, I had to retrieve from the Patient Gateway website…)

Explain to me again why the the heck he hasn't received treatment yet?

Well *now* they want to treat him…with steroids and radiation to shrink growth in this area (which will then make him inelegible for his trials). We have decided to hold off a couple days while we get our second opinion from Dr. Lawrence on Thursday.

Anyway, thanks for letting me vent. I could use some encouraging words tonight…this dang disease is spreading so fast!

Michelle, wife of Don, Stage IV

Viewing 9 reply threads

Replies

- - May 18, 2011 at 1:30 am
  - Quote
  JuleFL
  Participant
  I’m sorry to hear what you and Don are going through and hope that things will become focused and productive under Dr. Lawrence’s care. Hopefully the Braf test results will be in soon and you will have more information to determine which direction you and Don will take.
  
  Jule
- - May 18, 2011 at 1:30 am
  - Quote
  JuleFL
  Participant
  I’m sorry to hear what you and Don are going through and hope that things will become focused and productive under Dr. Lawrence’s care. Hopefully the Braf test results will be in soon and you will have more information to determine which direction you and Don will take.
  
  Jule
  - May 18, 2011 at 10:39 am
    
    Quote
    shellebrownies
    Participant
    
    Thanks, Jule.
    
    We believe the BRAF results should be in late this week or early next week. I already feel much better about Dr. Lawrence and his facility. We haven't even had our first official appointment yet, and the nurses have called back to answer questions for me 3 times. Dr. L heads up the Clinical Trials staff, so he's been around the melanoma block a few times.
    
    I pray to God that he jumps right on this case and treats it aggressively. All along, Don has said he is ready to fight; he's still waiting for his real fight to begin. Hopefully that fight starts tomorrow.
    
    Thanks for your words of encouragement!
    
    Michelle
  - May 18, 2011 at 10:39 am
    
    Quote
    shellebrownies
    Participant
    
    Thanks, Jule.
    
    We believe the BRAF results should be in late this week or early next week. I already feel much better about Dr. Lawrence and his facility. We haven't even had our first official appointment yet, and the nurses have called back to answer questions for me 3 times. Dr. L heads up the Clinical Trials staff, so he's been around the melanoma block a few times.
    
    I pray to God that he jumps right on this case and treats it aggressively. All along, Don has said he is ready to fight; he's still waiting for his real fight to begin. Hopefully that fight starts tomorrow.
    
    Thanks for your words of encouragement!
    
    Michelle
- - May 18, 2011 at 2:03 am
  - Quote
  Carol Taylor
  Participant
  Oh Michelle,
  
  I'm so sorry about all this! I am relieved to see mention of getting a second opinion from Dr. Lawrence! That's encouraging, that Don's being seen by someone else, and hopefully this dr will take a more agressive & interested approach with Don.
  
  YOU are encouraging and you want encouraging words! I have a feeling that you're ready to kick into overdrive and this new dr better watch out and cooperate with you and get busy treating your Don! Let all this that has happened and happened…the "hits" as you call them…use them as motivation to do some serious butt-kicking…of melanoma, of anyone who doesn't tell you what you need to be told and should be told…I'm with you, you should have been told about the liver lesions. To not tell you is almost anti-hypocratic oath.
  
  You know we're all sending you and Don all the prayers and positive thoughts we can. We've said it before but it bears repeating, as much as this weighs on you, please focus in a positive way and hang on to hope. There's every reason to be hopeful, especially now that you're getting a sound second opinion. Don't let fear, upsetness, etc, drain you of the precious energy you need to fight with and for Don. I respect all of you who are care-givers so much! "Care givers" is such a wholey inadequate phrase…but you're wonderful! Keep going!
  
  You vent any time you want to. Holding you close in prayer.
  
  O Lord, Your mercy and action is truly needed. Thank you for this coming second opinion with Dr. Lawrence. Grant him Your wisdom in treating Don! Hold him and Michelle close and help them focus, positively, in beating this. We pray for effective treatment and that Don manages treatment well as far as side effects go. Open doors and close others. And thank You for this place to vent and seek encouragement. Amen.
  
  Grace and peace to you Michelle,
  
  Carol
- - May 18, 2011 at 2:03 am
  - Quote
  Carol Taylor
  Participant
  Oh Michelle,
  
  I'm so sorry about all this! I am relieved to see mention of getting a second opinion from Dr. Lawrence! That's encouraging, that Don's being seen by someone else, and hopefully this dr will take a more agressive & interested approach with Don.
  
  YOU are encouraging and you want encouraging words! I have a feeling that you're ready to kick into overdrive and this new dr better watch out and cooperate with you and get busy treating your Don! Let all this that has happened and happened…the "hits" as you call them…use them as motivation to do some serious butt-kicking…of melanoma, of anyone who doesn't tell you what you need to be told and should be told…I'm with you, you should have been told about the liver lesions. To not tell you is almost anti-hypocratic oath.
  
  You know we're all sending you and Don all the prayers and positive thoughts we can. We've said it before but it bears repeating, as much as this weighs on you, please focus in a positive way and hang on to hope. There's every reason to be hopeful, especially now that you're getting a sound second opinion. Don't let fear, upsetness, etc, drain you of the precious energy you need to fight with and for Don. I respect all of you who are care-givers so much! "Care givers" is such a wholey inadequate phrase…but you're wonderful! Keep going!
  
  You vent any time you want to. Holding you close in prayer.
  
  O Lord, Your mercy and action is truly needed. Thank you for this coming second opinion with Dr. Lawrence. Grant him Your wisdom in treating Don! Hold him and Michelle close and help them focus, positively, in beating this. We pray for effective treatment and that Don manages treatment well as far as side effects go. Open doors and close others. And thank You for this place to vent and seek encouragement. Amen.
  
  Grace and peace to you Michelle,
  
  Carol
  - May 18, 2011 at 12:10 pm
    
    Quote
    shellebrownies
    Participant
    
    Carol,bad
    
    Your posts are always so supportive and inspiring. Thank you!
    
    I do think things will get better after tomorrow. I think the lack of treatment and the bad news piled upon bad news has gotten to me. Normally, I'm a pretty upbeat person!
    
    And to be fair to the doctor, we *were* told Don had liver lesions; we just were not told of the extent. Thank you again for your prayers.
    
    Michelle
  - May 18, 2011 at 12:10 pm
    
    Quote
    shellebrownies
    Participant
    
    Carol,bad
    
    Your posts are always so supportive and inspiring. Thank you!
    
    I do think things will get better after tomorrow. I think the lack of treatment and the bad news piled upon bad news has gotten to me. Normally, I'm a pretty upbeat person!
    
    And to be fair to the doctor, we *were* told Don had liver lesions; we just were not told of the extent. Thank you again for your prayers.
    
    Michelle
- - May 18, 2011 at 2:12 am
  - Quote
  FormerCaregiver
  Participant
  Very sorry to read that Don has been having lower back pain that now seem to be due to new
  metastases.
  
  Your concerns about Don not having treatment yet are very understandable. Therefore, I hope that
  Dr. Lawrence will be able to act very quickly and formulate a satisfactory treatment plan.
  
  Please let me know what happens on Thursday.
  
  Good luck and best wishes.
  
  Frank from Australia
- - May 18, 2011 at 2:12 am
  - Quote
  FormerCaregiver
  Participant
  Very sorry to read that Don has been having lower back pain that now seem to be due to new
  metastases.
  
  Your concerns about Don not having treatment yet are very understandable. Therefore, I hope that
  Dr. Lawrence will be able to act very quickly and formulate a satisfactory treatment plan.
  
  Please let me know what happens on Thursday.
  
  Good luck and best wishes.
  
  Frank from Australia
  - May 18, 2011 at 2:34 am
    
    Quote
    boot2aboot
    Participant
    
    you guys can't catch a break and either can i!!!! docs say 3 suspicious areas in my spine and right hip…just went and got a pet scan…hopefully this dr lawrence can get don on aggressive treatment NOW…i was hoping that bone mets were just arthritis in both our cases…we both have aggressive mel…i read sometimes they put people on zometa for bone mets…and rad it…
    
    boots
  - May 18, 2011 at 11:52 pm
    
    Quote
    shellebrownies
    Participant
    
    Aww, boots… I'm sorry to hear you have an aggressive mel as well.
    
    Trust me, if I have anything to say about it, Don *will* get aggressive treatment.
    
    And I hope you will make sure you do the same; don't let what happened with us happen to you, ok?
    
    Yes, Zometa was mentioned as part of his prior doctor's proposed treatment plan….it's a good bet that Dr. Lawrence will as well. We'll have to see whether radiation and steriods are recommended again as well. Frankly, I'm okay with just about anything as long as it will at least temporarily halt things so we can get our bearings with this dammed disease!
    
    Hang in there, boots. Were here for you, as well.
  - May 18, 2011 at 11:52 pm
    
    Quote
    shellebrownies
    Participant
    
    Aww, boots… I'm sorry to hear you have an aggressive mel as well.
    
    Trust me, if I have anything to say about it, Don *will* get aggressive treatment.
    
    And I hope you will make sure you do the same; don't let what happened with us happen to you, ok?
    
    Yes, Zometa was mentioned as part of his prior doctor's proposed treatment plan….it's a good bet that Dr. Lawrence will as well. We'll have to see whether radiation and steriods are recommended again as well. Frankly, I'm okay with just about anything as long as it will at least temporarily halt things so we can get our bearings with this dammed disease!
    
    Hang in there, boots. Were here for you, as well.
  - May 18, 2011 at 2:34 am
    
    Quote
    boot2aboot
    Participant
    
    you guys can't catch a break and either can i!!!! docs say 3 suspicious areas in my spine and right hip…just went and got a pet scan…hopefully this dr lawrence can get don on aggressive treatment NOW…i was hoping that bone mets were just arthritis in both our cases…we both have aggressive mel…i read sometimes they put people on zometa for bone mets…and rad it…
    
    boots
  - May 18, 2011 at 11:34 pm
    
    Quote
    shellebrownies
    Participant
    
    Thank you, Frank, for your kind words. It was sorely needed. I'm starting to recover and have just decided that tomorrow just IS going to go well. There is no other option. : )
    
    I'll let you know how things go.
    
    Michelle
  - May 18, 2011 at 11:34 pm
    
    Quote
    shellebrownies
    Participant
    
    Thank you, Frank, for your kind words. It was sorely needed. I'm starting to recover and have just decided that tomorrow just IS going to go well. There is no other option. : )
    
    I'll let you know how things go.
    
    Michelle
- - May 18, 2011 at 3:18 am
  - Quote
  Phil S
  Participant
  Michelle, So sorry to hear your news, I hope Don can get treatment soon and that his pain meds can control his discomfort. Glad to hear you got an appointment so soon to see Dr Lawrence, I know they share trials with Dana Farber, and hopefully he is more responsive to you. You are such a wonderful advocate for your husband, I know it’s so difficult right now, but continue to fight for the best care for him. It is so understandable that you are tired and discouraged tonight, but try to get some rest, then get up tomorrow and put your gloves back on. You are in our thoughts and prayers. Keep us posted on your meeting Thursday. Valerie (Phil’s wife)
  - May 18, 2011 at 2:53 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Dear Michelle,
    
    Wow, I have been following your journey and you have hit every brick wall imaginable. How frustrating and scary when you think every second ticking by may be giving this dang disease a further foothold. The reality is that there is HOPE. Hope that he will get assessed accurately (BRAF, HLA, etc), as well as his PET/CT/MRIs and blood work, and that the right treatment options will be described for you and arranged with your permissionASAP. The reality is that many stage 4 ers are living with metastatic melanoma and are living for many years, yes with a new life of checkups, treatments, etc, but I hope you have gleaned the most important message that stage 4 is not a death sentence. And the future will bring new and improved treatments and detection procedures. So please have HOPE. You are headed in the right direction.
    
    A word about the scanning tests….I know that my melanoma oncologist will give me his "reading" of the scan but then the scans are further read and scrutinized by radiologists…and then somtimes my oncologist has discussions with the radiologists to further clarify a clinical finding, etc, and there is a lag time of 24 hours maybe more sometimes, depending on people's schedules, emergencies they are handling, etc, before the FINAL reading is dictated and available. Then I can see that it may be easily overlooked to give the patient the final reading results. Thats wonderful that you can access it however it is that you can access it. I am usually sent a copy of the final reading and sometimes I read about things that I wasnt told about in my appt, the day of the scan. So I call them up and we discuss it. I also send for my medical records, in a written request, quarterly, and keep these for myself. It costs money also, but I gladly pay the costs so I can have my records. I do not get hard copies of the scans though.
    
    I was treated at Mass General, where I believe Dr Lawrence is, right? for my isolated limb perfusion. I did not have any of the melanoma staff for the perfusion, I had a heart transplant surgeon who has a melanoma speciality (ILP). I was admitted for 4 days and was on the 14th floor. I thought to myself, how will I get personal care in a place this big?? And I was very surprised….my care was EXCELLENT!! Every last person who cared for me was excellent, every nurse, every intern, even the cleaning staff were friendly and thorough. The place was immaculate and above all they were all reassuring. I knew I was in a top notch facility! And I adored my heart transplant surgeon…in his office there is a picture of him on bended knee kissing the Pope's ring….my mom was with me…and while neither of us are the practicing Catholics were once were, we were both impressed with that picture, and my Mom whispered, "look at that picture, you are going to be ok!"
    
    I will be thinking of you both this Thursday and know that you will get started soon on treatment that is going to work!!!!
    
    Hugs,
    
    Vermont_Donna, stage 3a
  - May 18, 2011 at 2:53 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Dear Michelle,
    
    Wow, I have been following your journey and you have hit every brick wall imaginable. How frustrating and scary when you think every second ticking by may be giving this dang disease a further foothold. The reality is that there is HOPE. Hope that he will get assessed accurately (BRAF, HLA, etc), as well as his PET/CT/MRIs and blood work, and that the right treatment options will be described for you and arranged with your permissionASAP. The reality is that many stage 4 ers are living with metastatic melanoma and are living for many years, yes with a new life of checkups, treatments, etc, but I hope you have gleaned the most important message that stage 4 is not a death sentence. And the future will bring new and improved treatments and detection procedures. So please have HOPE. You are headed in the right direction.
    
    A word about the scanning tests….I know that my melanoma oncologist will give me his "reading" of the scan but then the scans are further read and scrutinized by radiologists…and then somtimes my oncologist has discussions with the radiologists to further clarify a clinical finding, etc, and there is a lag time of 24 hours maybe more sometimes, depending on people's schedules, emergencies they are handling, etc, before the FINAL reading is dictated and available. Then I can see that it may be easily overlooked to give the patient the final reading results. Thats wonderful that you can access it however it is that you can access it. I am usually sent a copy of the final reading and sometimes I read about things that I wasnt told about in my appt, the day of the scan. So I call them up and we discuss it. I also send for my medical records, in a written request, quarterly, and keep these for myself. It costs money also, but I gladly pay the costs so I can have my records. I do not get hard copies of the scans though.
    
    I was treated at Mass General, where I believe Dr Lawrence is, right? for my isolated limb perfusion. I did not have any of the melanoma staff for the perfusion, I had a heart transplant surgeon who has a melanoma speciality (ILP). I was admitted for 4 days and was on the 14th floor. I thought to myself, how will I get personal care in a place this big?? And I was very surprised….my care was EXCELLENT!! Every last person who cared for me was excellent, every nurse, every intern, even the cleaning staff were friendly and thorough. The place was immaculate and above all they were all reassuring. I knew I was in a top notch facility! And I adored my heart transplant surgeon…in his office there is a picture of him on bended knee kissing the Pope's ring….my mom was with me…and while neither of us are the practicing Catholics were once were, we were both impressed with that picture, and my Mom whispered, "look at that picture, you are going to be ok!"
    
    I will be thinking of you both this Thursday and know that you will get started soon on treatment that is going to work!!!!
    
    Hugs,
    
    Vermont_Donna, stage 3a
  - May 19, 2011 at 12:23 am
    
    Quote
    shellebrownies
    Participant
    
    Valerie,
    
    Thank you for your kind words. Speaking with you was so helpful; I hope you know that. I actually did hear about that email…
    
    Dr. Ibrahim was none too happy about it…but then she didn't like it when we told her that we thought the amount of time she made my husband wait for treatment was unacceptable and we didn't trust her, either!
    
    I was still in a rough state of mind this morning, but this afternoon, I just *decided* that tomorrow is going to go well and that Don is going to start getting better.
    
    I'll be sure to let you know how it goes.
    
    Michelle
  - May 19, 2011 at 12:23 am
    
    Quote
    shellebrownies
    Participant
    
    Valerie,
    
    Thank you for your kind words. Speaking with you was so helpful; I hope you know that. I actually did hear about that email…
    
    Dr. Ibrahim was none too happy about it…but then she didn't like it when we told her that we thought the amount of time she made my husband wait for treatment was unacceptable and we didn't trust her, either!
    
    I was still in a rough state of mind this morning, but this afternoon, I just *decided* that tomorrow is going to go well and that Don is going to start getting better.
    
    I'll be sure to let you know how it goes.
    
    Michelle
- - May 18, 2011 at 3:18 am
  - Quote
  Phil S
  Participant
  Michelle, So sorry to hear your news, I hope Don can get treatment soon and that his pain meds can control his discomfort. Glad to hear you got an appointment so soon to see Dr Lawrence, I know they share trials with Dana Farber, and hopefully he is more responsive to you. You are such a wonderful advocate for your husband, I know it’s so difficult right now, but continue to fight for the best care for him. It is so understandable that you are tired and discouraged tonight, but try to get some rest, then get up tomorrow and put your gloves back on. You are in our thoughts and prayers. Keep us posted on your meeting Thursday. Valerie (Phil’s wife)
- - May 18, 2011 at 7:43 pm
  - Quote
  Gene_S
  Participant
  Michelle,
  
  Sorry to hear the bad news. I am not sure if you have heard of PLX4032,
  
  it is a drug that show quick response, but not long term results (yet anyway).
  
  What you need is time right now, so do check it out.
  
  see:
  
  http://eon.businesswire.com/news/eon/20110106005659/en/Plexxikon-Signs-Agreement-Genentech-Co-Promote-PLX4032
  
  ———————————————————————————————————————-
  
  Apart from surgical treatments, there are few therapies available for
  
  melanoma that provide safe, reliable outcomes. According to Dr.
  
  Weinstock, however, various threads of research shed light on the
  
  possibility of promising agents in the future. “As we understand
  
  more the mechanisms by which melanomas develop and grow,
  
  agents will likely be produced that can address these specific mechanisms,”
  
  he notes.
  
  Two agents have generated particular interest. The first is an investigational
  
  molecule currently known as RH7204 (PLX4032,
  
  Genentech) that is designed to selectively inhibit a cancer-causing,
  
  mutated form of the BRAF protein found in roughly half of metastatic
  
  melanomas. In a recent study presented at the seventh
  
  International Melanoma Research Congress of the Society for
  
  Melanoma Research, people who participated in the trial lived a
  
  median of 6.2 months without their disease getting worse (median
  
  progression-free survival or PFS), which is significantly higher than
  
  the typical two month progression-free survival for these patients.
  
  The second agent, known as PV-10 (Provectus), yielded an objective
  
  response (OR) in 49 percent of patients in a recent phase 2
  
  trial, with 71 percent of patients achieving locoregional disease
  
  control (stable disease or better) in their injected lesions. A mean
  
  Progression Free Survival (PFS) of 11.7 months was observed among
  
  subjects achieving an OR. These results were also presented at the
  
  International Melanoma Research Congress in Sydney.
  
  Also recently, the FDA has extended its review of ipilimumab
  
  (Bristol-Myers Squibb) for the treatment of advanced melanoma.
  
  The original target date for decision has been pushed back to March
  
  26, 2011 so that the FDA can review new data about the drug’s use in
  
  pre-treated melanoma patients. Trial results published earlier this
  
  year showed average patient survival time was 10 months with ipilimumab
  
  versus just over six months for patients using traditional
  
  therapies.
  
  ——————————————————————————–
  
  complete article at
  
  http://bmctoday.net/practicaldermatology/pdfs/PD1210%20Skin%20Cancer%20Fea.pdf
  
  Best Wishes,
  
  Gene
  - May 19, 2011 at 12:33 am
    
    Quote
    shellebrownies
    Participant
    
    Thanks a lot Gene for that info. We're still waiting on Don's BRAF results and are hoping his test will come back positive. It's good to know there are things out there that could actually stop this disease in its tracks or even backtrack it a bit. That would be fantastic!
  - May 19, 2011 at 12:33 am
    
    Quote
    shellebrownies
    Participant
    
    Thanks a lot Gene for that info. We're still waiting on Don's BRAF results and are hoping his test will come back positive. It's good to know there are things out there that could actually stop this disease in its tracks or even backtrack it a bit. That would be fantastic!
- - May 18, 2011 at 7:43 pm
  - Quote
  Gene_S
  Participant
  Michelle,
  
  Sorry to hear the bad news. I am not sure if you have heard of PLX4032,
  
  it is a drug that show quick response, but not long term results (yet anyway).
  
  What you need is time right now, so do check it out.
  
  see:
  
  http://eon.businesswire.com/news/eon/20110106005659/en/Plexxikon-Signs-Agreement-Genentech-Co-Promote-PLX4032
  
  ———————————————————————————————————————-
  
  Apart from surgical treatments, there are few therapies available for
  
  melanoma that provide safe, reliable outcomes. According to Dr.
  
  Weinstock, however, various threads of research shed light on the
  
  possibility of promising agents in the future. “As we understand
  
  more the mechanisms by which melanomas develop and grow,
  
  agents will likely be produced that can address these specific mechanisms,”
  
  he notes.
  
  Two agents have generated particular interest. The first is an investigational
  
  molecule currently known as RH7204 (PLX4032,
  
  Genentech) that is designed to selectively inhibit a cancer-causing,
  
  mutated form of the BRAF protein found in roughly half of metastatic
  
  melanomas. In a recent study presented at the seventh
  
  International Melanoma Research Congress of the Society for
  
  Melanoma Research, people who participated in the trial lived a
  
  median of 6.2 months without their disease getting worse (median
  
  progression-free survival or PFS), which is significantly higher than
  
  the typical two month progression-free survival for these patients.
  
  The second agent, known as PV-10 (Provectus), yielded an objective
  
  response (OR) in 49 percent of patients in a recent phase 2
  
  trial, with 71 percent of patients achieving locoregional disease
  
  control (stable disease or better) in their injected lesions. A mean
  
  Progression Free Survival (PFS) of 11.7 months was observed among
  
  subjects achieving an OR. These results were also presented at the
  
  International Melanoma Research Congress in Sydney.
  
  Also recently, the FDA has extended its review of ipilimumab
  
  (Bristol-Myers Squibb) for the treatment of advanced melanoma.
  
  The original target date for decision has been pushed back to March
  
  26, 2011 so that the FDA can review new data about the drug’s use in
  
  pre-treated melanoma patients. Trial results published earlier this
  
  year showed average patient survival time was 10 months with ipilimumab
  
  versus just over six months for patients using traditional
  
  therapies.
  
  ——————————————————————————–
  
  complete article at
  
  http://bmctoday.net/practicaldermatology/pdfs/PD1210%20Skin%20Cancer%20Fea.pdf
  
  Best Wishes,
  
  Gene