Gallbladder Cancer - 2011

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Comments

  • nzinan
    nzinan Member Posts: 3
    #162
    Jean160 said:

    Gallbladder cancer clinics
    Hi Nzinan. In regards to your question about the Lahey clinic. I cannot directly answer regarding physicians in that clinic (I live on the West Coast); however, when my husband and I were trying to read everything possible about gallbladder cancer, some good cancer information comes from the Jean Farber clinic in Boston. There are so many good medical centers in the Boston area, and I am sure they communicate with each other. It has been my experience that good doctors will seek the best information for their patients. The important thing is to feel comfortable with the specialist you see in regards that he/she is seeking other experts to be involved in your father's care. The frustrating thing is most people do not have experience with gallbladder cancer. But I found that my initial surgeon admitted where he did not have experience in the needed liver resection surgery. I felt I was given good options, and he referred me to specialist who had the experience (although even the one that I saw with the most experience in the surgery; had only done 15 cases in 12 years!

    Rocky, it is good to hear that your bile ducts were clear. I wish those scans would show the detail we need. It seems surgical sites have their own inflammation areas that sometimes make some of the detail less easy to see. Hopefully your fatigue is getting better.

    Cheryl, I am happy for you that you get to wait until after the holidays before more chemo. It's good to take a break, eh? The best of luck to you for the possible surgery down the line to get rid of those nodules. Hopefully they will be easy to take out!

    I continue to feel good, but can't help but think of what a crazy and shocking year this has been. I try not to worry about future scans, but I would sure feel better if I was several years out from this initial diagnosis! Take care, all! Jean

    Gallbladder cancer clinics
    Thank you Jean for your response. I will hopefully be more involved now that I have a semester break and will make sure that we are comfortable with who he sees. I know the surgeon removed the gallbladder and some lymph nodes, 3 of 7 were positive for metastasis. Don't know anything about the liver, I'll have to ask about that. I wish you all the best in your treatment.
  • Jean160
    Jean160 Member Posts: 27
    #163
    westie66 said:

    Lily
    Hi all: First of all, Lily is fine. We email back and forth. But sometimes she needs to take a break from these discussion boards.
    Jean: Now I have new information. My oncologist phoned yesterday. Apparently I have almost been accepted for the peritoneum stripping surgery (do I want it????) but before I am, I had to have a 3D CT scan, a PET scan, and laparoscopic surgery to look around my abdomen to see if there are things in there that the MRIs have missed. Hope none of this happens before Christmas! The surgery on its own is terrifying as it was in April 2010 that I had laproscopic surgery to remove the gallbladder, its tumour, and part of my liver - and ended up in emergency with problems, had another surgery and ended up in intensive care for 10 days! So, I'm a bit stressed thinking about it!
    Cheryl

    pending surgery
    Wow, Cheryl...... I can understand your anxiety. However, it sounds like they must feel you would be a good candidate. At least this laproscopic surgery would just be a look around and not the actual peritoneum stripping (they would not do that laproscopically). At least this time they know what they are dealing with and will have a more exact game plan. You are strong and have come so far. I will be sending extra positive thoughts and prayers your way. Take care. Jean
  • westie66
    westie66 Member Posts: 642
    #164
    Jean160 said:

    pending surgery
    Wow, Cheryl...... I can understand your anxiety. However, it sounds like they must feel you would be a good candidate. At least this laproscopic surgery would just be a look around and not the actual peritoneum stripping (they would not do that laproscopically). At least this time they know what they are dealing with and will have a more exact game plan. You are strong and have come so far. I will be sending extra positive thoughts and prayers your way. Take care. Jean

    Pending Surgery
    Hi Jean: thanks! Any surgery after last year freaks me out but the surgeon is a good one so I will worry about it after Christmas!
    Had snow today so the ground is white and it is much colder than it has been. Feels more christmassy.
    Cheryl
  • JayRay
    JayRay Member Posts: 5
    #165
    westie66 said:

    Lily
    Hi all: First of all, Lily is fine. We email back and forth. But sometimes she needs to take a break from these discussion boards.
    Jean: Now I have new information. My oncologist phoned yesterday. Apparently I have almost been accepted for the peritoneum stripping surgery (do I want it????) but before I am, I had to have a 3D CT scan, a PET scan, and laparoscopic surgery to look around my abdomen to see if there are things in there that the MRIs have missed. Hope none of this happens before Christmas! The surgery on its own is terrifying as it was in April 2010 that I had laproscopic surgery to remove the gallbladder, its tumour, and part of my liver - and ended up in emergency with problems, had another surgery and ended up in intensive care for 10 days! So, I'm a bit stressed thinking about it!
    Cheryl

    Looking Forward To A Good New Year
    Cheryl, Lily, Maudsie and new members,
    First, I want to wish Cheryl good luck if she does have surgery. Cheryl, you have a lot of people praying for your good health.
    I haven't written on this site since this spring, because I was busy going through chemo and radiation. It was tough, but I am still here. GB cancer is rare so I think it is important that we all let others know that we are out here and plan to be around for a long time. I am focused on taking good care of my body and enjoying each day that I have. My husband is getting me a bicycle for Christmas. I haven't been on a bike in years, but I think it will be fun riding around the neighborhood.
    I just wanted to take a few minutes to wish all of us fabulous survivors of GB cancer happy holidays and good health to each of us in the new year.
    JayRay
  • westie66
    westie66 Member Posts: 642
    #166
    nzinan said:

    Gallbladder cancer clinics
    Thank you Jean for your response. I will hopefully be more involved now that I have a semester break and will make sure that we are comfortable with who he sees. I know the surgeon removed the gallbladder and some lymph nodes, 3 of 7 were positive for metastasis. Don't know anything about the liver, I'll have to ask about that. I wish you all the best in your treatment.

    Thanks, JayRay!
    Hi: Thank you so much for your kind words, JayRay. Yup, we all need to support each other and to make this disease more well known to change those terrible statistics! Check out the peritoneum discussion board too as one of the metatases of gallbladder cancer is to the peritoneum. I haven't heard anything more about when the surgery but have yet another CT scan scheduled for Jan 9. Then will be the PET scan.
    Have a Merry Christmas!
    Cheryl
  • maudsie
    maudsie Member Posts: 54
    #167
    westie66 said:

    Thanks, JayRay!
    Hi: Thank you so much for your kind words, JayRay. Yup, we all need to support each other and to make this disease more well known to change those terrible statistics! Check out the peritoneum discussion board too as one of the metatases of gallbladder cancer is to the peritoneum. I haven't heard anything more about when the surgery but have yet another CT scan scheduled for Jan 9. Then will be the PET scan.
    Have a Merry Christmas!
    Cheryl

    holidays
    For ALL of us battling and surviving gallbladder cancer, have a great restful holiday, full of heath and hope, you all mean SO much to me, I'll be here in the new year, ready to join you all and move forward with spirit and unity.

    Maudsie
  • Monarch
    Monarch Member Posts: 36
    #168
    How are you Rocky?
    Hey Rocky,

    I'm thinking you've recently had a follow-up scan. How'd it go?

    Mom's second post-treatment scan is tomorrow. Results a week from tomorrow. Mom will then head into a round of Gem/ox as "an insurance policy".

    Hope that everyone is doing well and that 2012 brings you health and strength.

    Charmi
  • LucyDoodle
    LucyDoodle Member Posts: 23
    #169
    Monarch said:

    How are you Rocky?
    Hey Rocky,

    I'm thinking you've recently had a follow-up scan. How'd it go?

    Mom's second post-treatment scan is tomorrow. Results a week from tomorrow. Mom will then head into a round of Gem/ox as "an insurance policy".

    Hope that everyone is doing well and that 2012 brings you health and strength.

    Charmi

    Hello and a question
    Hi,
    My husband was diagnosed in June this year with stage 4 Gallbladder cancer. Surgery was sadly not possible as when they tried they discovered the cancer had spread further than first thought (liver, bile ducts and nodes on his diaphragm as well as a large tumor in his gallbladder).
    He is having chemo (gemzar and cisplatin) and coping remarkable well on it. The the last two scans have showed the tumors are stable even if they are not shrinking. He has also had profiling done to identify which types of chemo might be more effective if and when he needs to switch to something else.
    Ok that's the introduction done......now I have a question, Hubby has been troubled with a cough on and off since starting chemo, his lungs are included in the CT scan and nothing worrying has been seen. I have read that Gemzar may cause a cough, has anyone else had any experience of this and if so what has helped.
    I am so glad to have found this group.
    Deb
  • maudsie
    maudsie Member Posts: 54
    #170
    LucyDoodle said:

    Hello and a question
    Hi,
    My husband was diagnosed in June this year with stage 4 Gallbladder cancer. Surgery was sadly not possible as when they tried they discovered the cancer had spread further than first thought (liver, bile ducts and nodes on his diaphragm as well as a large tumor in his gallbladder).
    He is having chemo (gemzar and cisplatin) and coping remarkable well on it. The the last two scans have showed the tumors are stable even if they are not shrinking. He has also had profiling done to identify which types of chemo might be more effective if and when he needs to switch to something else.
    Ok that's the introduction done......now I have a question, Hubby has been troubled with a cough on and off since starting chemo, his lungs are included in the CT scan and nothing worrying has been seen. I have read that Gemzar may cause a cough, has anyone else had any experience of this and if so what has helped.
    I am so glad to have found this group.
    Deb

    Welcome, Deb. I just wanted
    Welcome, Deb. I just wanted to say HI ....and welcome....but I have no answer for your question about what to do about a cough due to chemo (specifically Gemzar) -- my first thought is "how are the lungs?" but they are clear, good news. The nodes on his diaphragm I suppose could contribute to a cough, I don't know. Gemzar/cisplatin is a great chemo combo, so he's on the right track, let us know how things go moving forward.

    Maudsie
  • maudsie
    maudsie Member Posts: 54
    #171
    LucyDoodle said:

    Hello and a question
    Hi,
    My husband was diagnosed in June this year with stage 4 Gallbladder cancer. Surgery was sadly not possible as when they tried they discovered the cancer had spread further than first thought (liver, bile ducts and nodes on his diaphragm as well as a large tumor in his gallbladder).
    He is having chemo (gemzar and cisplatin) and coping remarkable well on it. The the last two scans have showed the tumors are stable even if they are not shrinking. He has also had profiling done to identify which types of chemo might be more effective if and when he needs to switch to something else.
    Ok that's the introduction done......now I have a question, Hubby has been troubled with a cough on and off since starting chemo, his lungs are included in the CT scan and nothing worrying has been seen. I have read that Gemzar may cause a cough, has anyone else had any experience of this and if so what has helped.
    I am so glad to have found this group.
    Deb

    cough
    Welcome, Deb. I just wanted to say HI ....and welcome....but I have no answer for your question about what to do about a cough due to chemo (specifically Gemzar) -- my first thought is "how are the lungs?" but they are clear, good news. The nodes on his diaphragm I suppose could contribute to a cough, I don't know. Gemzar/cisplatin is a great chemo combo, so he's on the right track, let us know how things go moving forward.

    Maudsie
  • lirok
    lirok Member Posts: 49
    #172
    Monarch said:

    How are you Rocky?
    Hey Rocky,

    I'm thinking you've recently had a follow-up scan. How'd it go?

    Mom's second post-treatment scan is tomorrow. Results a week from tomorrow. Mom will then head into a round of Gem/ox as "an insurance policy".

    Hope that everyone is doing well and that 2012 brings you health and strength.

    Charmi

    Hi Charmi !!!!!!!!!!!!!

    Hi Charmi !!!!!!!!!!!!!



    Hope your holidays were great. I was back at Sloan for my follow up on Tuesday. The latest scan showed basically no changes at the original site of the tumor. I still have some "spots" that the radiation did not affect. They are unchanged. I have no new growths and my liver and bile ducts look good. All of my major organs look good. One problem is that I have a couple of lymph nodes in my chest that have shown some growth. My 19-9 Antigen test came back at 114 which though still high is less than the 116 from 4 weeks ago. Doc is a little concerned about the nodes so I am going next week for a PET scan at the main building. They are also doing a bone scan to see if they can see something to explain my continuing joint pain. I am still having a tremendous amount of pain when walking or climbing steps.

    All in all, not a bad visit but I was hoping for better. I have a feeling I have some additional chemo ahead. On a positive note, I was approved for Social Security Disability. We just keep our head up and keep fighting the fight.

    Thanks for thinking of me and I have your mom in my prayers. Hope everything continues to go well.

    All the best to everyone else on this board. May 2012 bring us ALL nothing but good health.



    Rocky
  • Monarch
    Monarch Member Posts: 36
    #173
    lirok said:

    Hi Charmi !!!!!!!!!!!!!

    Hi Charmi !!!!!!!!!!!!!



    Hope your holidays were great. I was back at Sloan for my follow up on Tuesday. The latest scan showed basically no changes at the original site of the tumor. I still have some "spots" that the radiation did not affect. They are unchanged. I have no new growths and my liver and bile ducts look good. All of my major organs look good. One problem is that I have a couple of lymph nodes in my chest that have shown some growth. My 19-9 Antigen test came back at 114 which though still high is less than the 116 from 4 weeks ago. Doc is a little concerned about the nodes so I am going next week for a PET scan at the main building. They are also doing a bone scan to see if they can see something to explain my continuing joint pain. I am still having a tremendous amount of pain when walking or climbing steps.

    All in all, not a bad visit but I was hoping for better. I have a feeling I have some additional chemo ahead. On a positive note, I was approved for Social Security Disability. We just keep our head up and keep fighting the fight.

    Thanks for thinking of me and I have your mom in my prayers. Hope everything continues to go well.

    All the best to everyone else on this board. May 2012 bring us ALL nothing but good health.



    Rocky

    So glad to hear from you, Rocky!
    Rocky,

    I'm glad for the good news...and certainly hoping for the best on your PET scan. Mom's original CT scans showed a worrisome lymph node in her chest (next to her vena cava). The doc was able to get to the area and remove all the "junk". The results came back clear...that is my wish for you, too! I'm hoping they are just reflecting inflammation from all your treatments and procedures.

    We get Mom's CT scan results on Wednesday. That ol' scanxiety can really get to you at times! When Mom had her scan last Wednesday, she also had blood work and a port flush. Well, they got the first saline in with no trouble but couldn't draw any blood through the port. After several attempts and a trip to interventional radiology to have a port scan, they were unable to get the dye in for the test. Because she'd been stuck 5 times in the port, they decided to give it one more go next Weds after the scan results. But, it looks like we'll be having the port replaced within the next couple weeks.

    I'm glad you got the disability approved. One less thing to worry about.

    Let me know about your scan results (PET and bone). I'm sending positive vibes your way...and so are my parents. As always, you are in our prayers!

    We will both have good news to report later this week. I just know it!

    Charmi

    (btw - think I mentioned it but in case I didn't, Mom was having leg pain too. They found she had a dvt but aside from that, her legs just hurt. She's been on Celebrex for a few weeks now and it has definitely helped.)
  • Lily50
    Lily50 Member Posts: 209
    #174
    Monarch said:

    So glad to hear from you, Rocky!
    Rocky,

    I'm glad for the good news...and certainly hoping for the best on your PET scan. Mom's original CT scans showed a worrisome lymph node in her chest (next to her vena cava). The doc was able to get to the area and remove all the "junk". The results came back clear...that is my wish for you, too! I'm hoping they are just reflecting inflammation from all your treatments and procedures.

    We get Mom's CT scan results on Wednesday. That ol' scanxiety can really get to you at times! When Mom had her scan last Wednesday, she also had blood work and a port flush. Well, they got the first saline in with no trouble but couldn't draw any blood through the port. After several attempts and a trip to interventional radiology to have a port scan, they were unable to get the dye in for the test. Because she'd been stuck 5 times in the port, they decided to give it one more go next Weds after the scan results. But, it looks like we'll be having the port replaced within the next couple weeks.

    I'm glad you got the disability approved. One less thing to worry about.

    Let me know about your scan results (PET and bone). I'm sending positive vibes your way...and so are my parents. As always, you are in our prayers!

    We will both have good news to report later this week. I just know it!

    Charmi

    (btw - think I mentioned it but in case I didn't, Mom was having leg pain too. They found she had a dvt but aside from that, her legs just hurt. She's been on Celebrex for a few weeks now and it has definitely helped.)

    HAPPY NEW YEAR!
    Hi Everybody!

    Happy New Year to all my old friends and many new friends that have posted to this board since I have been MIA. Many good things have happened in the last couple of months for me, most notably my daughter graduated from the University when I originally didn’t know if I would be there to see her graduate from High School. I got my last scan of the year and everything was good. No recurrence of cancer!

    I spent some time reading all of your new stories and I am truly amazed at the strength and courage that all of you possess within yourselves and for the ones that you love.

    Thanks Maudsie, Cheryl and Murray for taking the time to help others with their journey.

    This is a very nasty disease and going through this journey takes patience, perseverance and never letting it get the best of you.

    Just a few short notes regarding a few things.
    1) L-Glutamine is the best thing since sliced butter. My oncologist let me take it during my chemotherapy and I continue to still take it. After 6 years you would think that I would no longer have the tingling in my hands and feet but now at least it is minimal.
    2) I too had coughing issues attributed to Gemzar.
    3) Fatigue is still with me but it is bearable.
    4) I have short-term memory loss from my aggressive treatment.
    4) I still am prone to infections but it is just bothersome.
    5) Joint pain is a given but manageable.
    6) I still have to take Potassium pills daily as the chemo did a slight number on my kidneys.
    7) Exercise helps.
    8) Gallbladder Cancer is a disease that is on the SSA – Compassionate Allowances Listing (CAL) for expedited disability benefits.
    It can be hard to realize within ourselves that we aren’t able to return to work as it is a full time job to fight this disease. I went on Social Security at the age of 46.
    9) Finding out what works for you and what doesn’t takes time, be patient.
    10) Have short-term goals, so you always have something to look forward to and rejoice when you meet those goals.

    Hope and Faith will carry you through! Don’t ever give up!
    Happy and Healthy 2012!
    Take Care,
    Lily
  • Monarch
    Monarch Member Posts: 36
    #175
    Lily50 said:

    HAPPY NEW YEAR!
    Hi Everybody!

    Happy New Year to all my old friends and many new friends that have posted to this board since I have been MIA. Many good things have happened in the last couple of months for me, most notably my daughter graduated from the University when I originally didn’t know if I would be there to see her graduate from High School. I got my last scan of the year and everything was good. No recurrence of cancer!

    I spent some time reading all of your new stories and I am truly amazed at the strength and courage that all of you possess within yourselves and for the ones that you love.

    Thanks Maudsie, Cheryl and Murray for taking the time to help others with their journey.

    This is a very nasty disease and going through this journey takes patience, perseverance and never letting it get the best of you.

    Just a few short notes regarding a few things.
    1) L-Glutamine is the best thing since sliced butter. My oncologist let me take it during my chemotherapy and I continue to still take it. After 6 years you would think that I would no longer have the tingling in my hands and feet but now at least it is minimal.
    2) I too had coughing issues attributed to Gemzar.
    3) Fatigue is still with me but it is bearable.
    4) I have short-term memory loss from my aggressive treatment.
    4) I still am prone to infections but it is just bothersome.
    5) Joint pain is a given but manageable.
    6) I still have to take Potassium pills daily as the chemo did a slight number on my kidneys.
    7) Exercise helps.
    8) Gallbladder Cancer is a disease that is on the SSA – Compassionate Allowances Listing (CAL) for expedited disability benefits.
    It can be hard to realize within ourselves that we aren’t able to return to work as it is a full time job to fight this disease. I went on Social Security at the age of 46.
    9) Finding out what works for you and what doesn’t takes time, be patient.
    10) Have short-term goals, so you always have something to look forward to and rejoice when you meet those goals.

    Hope and Faith will carry you through! Don’t ever give up!
    Happy and Healthy 2012!
    Take Care,
    Lily

    Lily!
    I am so glad to see your post, Lily. And even more happy to read that you are doing well.

    Congratulations on your daughter's graduation. And, wooohoooo - a clear scan is great news.

    You have been a Godsend to me and my family. I can't thank you enough for sharing your journey with all of us here.

    Here's to a year of health, happiness, fun, and love for everyone.

    Charmi
  • Monarch
    Monarch Member Posts: 36
    #176
    Lily50 said:

    HAPPY NEW YEAR!
    Hi Everybody!

    Happy New Year to all my old friends and many new friends that have posted to this board since I have been MIA. Many good things have happened in the last couple of months for me, most notably my daughter graduated from the University when I originally didn’t know if I would be there to see her graduate from High School. I got my last scan of the year and everything was good. No recurrence of cancer!

    I spent some time reading all of your new stories and I am truly amazed at the strength and courage that all of you possess within yourselves and for the ones that you love.

    Thanks Maudsie, Cheryl and Murray for taking the time to help others with their journey.

    This is a very nasty disease and going through this journey takes patience, perseverance and never letting it get the best of you.

    Just a few short notes regarding a few things.
    1) L-Glutamine is the best thing since sliced butter. My oncologist let me take it during my chemotherapy and I continue to still take it. After 6 years you would think that I would no longer have the tingling in my hands and feet but now at least it is minimal.
    2) I too had coughing issues attributed to Gemzar.
    3) Fatigue is still with me but it is bearable.
    4) I have short-term memory loss from my aggressive treatment.
    4) I still am prone to infections but it is just bothersome.
    5) Joint pain is a given but manageable.
    6) I still have to take Potassium pills daily as the chemo did a slight number on my kidneys.
    7) Exercise helps.
    8) Gallbladder Cancer is a disease that is on the SSA – Compassionate Allowances Listing (CAL) for expedited disability benefits.
    It can be hard to realize within ourselves that we aren’t able to return to work as it is a full time job to fight this disease. I went on Social Security at the age of 46.
    9) Finding out what works for you and what doesn’t takes time, be patient.
    10) Have short-term goals, so you always have something to look forward to and rejoice when you meet those goals.

    Hope and Faith will carry you through! Don’t ever give up!
    Happy and Healthy 2012!
    Take Care,
    Lily

    Double post
    (deleted double post)
  • Monarch
    Monarch Member Posts: 36
    #177
    lirok said:

    Hi Charmi !!!!!!!!!!!!!

    Hi Charmi !!!!!!!!!!!!!



    Hope your holidays were great. I was back at Sloan for my follow up on Tuesday. The latest scan showed basically no changes at the original site of the tumor. I still have some "spots" that the radiation did not affect. They are unchanged. I have no new growths and my liver and bile ducts look good. All of my major organs look good. One problem is that I have a couple of lymph nodes in my chest that have shown some growth. My 19-9 Antigen test came back at 114 which though still high is less than the 116 from 4 weeks ago. Doc is a little concerned about the nodes so I am going next week for a PET scan at the main building. They are also doing a bone scan to see if they can see something to explain my continuing joint pain. I am still having a tremendous amount of pain when walking or climbing steps.

    All in all, not a bad visit but I was hoping for better. I have a feeling I have some additional chemo ahead. On a positive note, I was approved for Social Security Disability. We just keep our head up and keep fighting the fight.

    Thanks for thinking of me and I have your mom in my prayers. Hope everything continues to go well.

    All the best to everyone else on this board. May 2012 bring us ALL nothing but good health.



    Rocky

    Update
    Wanted to give you a quick update...and an excellent one.

    Mom had her second post-chemo CT scan. It came back clear. No recurrence. Her CA 19-9 is 20. They've decided to not do any more chemo at this time. The doc had been advocating a round of Gem/Ox but has agreed that we should hold off on that. The hope is that Mom will never had to have it - but if she does, she will. Next scan scheduled for April.

    Mom's port has stopped working. So, on 2/2, they will remove it. There was discussion about replacing it but again, since there are no current chemo plans, they decided to hold off on a new port, too.

    We have been blessed.

    My family continues to pray for everyone on this board, all of your families, and for your medical teams as well.

    Charmi
  • westie66
    westie66 Member Posts: 642
    #178
    Monarch said:

    Update
    Wanted to give you a quick update...and an excellent one.

    Mom had her second post-chemo CT scan. It came back clear. No recurrence. Her CA 19-9 is 20. They've decided to not do any more chemo at this time. The doc had been advocating a round of Gem/Ox but has agreed that we should hold off on that. The hope is that Mom will never had to have it - but if she does, she will. Next scan scheduled for April.

    Mom's port has stopped working. So, on 2/2, they will remove it. There was discussion about replacing it but again, since there are no current chemo plans, they decided to hold off on a new port, too.

    We have been blessed.

    My family continues to pray for everyone on this board, all of your families, and for your medical teams as well.

    Charmi

    Good news!
    That's great news Charmi! And welcome back Lily! So glad you're good.
    Cheryl
  • haugy
    haugy Member Posts: 11
    #179
    westie66 said:

    Good news!
    That's great news Charmi! And welcome back Lily! So glad you're good.
    Cheryl

    Good news
    That is terrific to hear Charmi. Welcome back Lily , its great to hear youre scan went well and thanks for posting the tips.
    Murray
  • LucyDoodle
    LucyDoodle Member Posts: 23
    #180
    Lily50 said:

    HAPPY NEW YEAR!
    Hi Everybody!

    Happy New Year to all my old friends and many new friends that have posted to this board since I have been MIA. Many good things have happened in the last couple of months for me, most notably my daughter graduated from the University when I originally didn’t know if I would be there to see her graduate from High School. I got my last scan of the year and everything was good. No recurrence of cancer!

    I spent some time reading all of your new stories and I am truly amazed at the strength and courage that all of you possess within yourselves and for the ones that you love.

    Thanks Maudsie, Cheryl and Murray for taking the time to help others with their journey.

    This is a very nasty disease and going through this journey takes patience, perseverance and never letting it get the best of you.

    Just a few short notes regarding a few things.
    1) L-Glutamine is the best thing since sliced butter. My oncologist let me take it during my chemotherapy and I continue to still take it. After 6 years you would think that I would no longer have the tingling in my hands and feet but now at least it is minimal.
    2) I too had coughing issues attributed to Gemzar.
    3) Fatigue is still with me but it is bearable.
    4) I have short-term memory loss from my aggressive treatment.
    4) I still am prone to infections but it is just bothersome.
    5) Joint pain is a given but manageable.
    6) I still have to take Potassium pills daily as the chemo did a slight number on my kidneys.
    7) Exercise helps.
    8) Gallbladder Cancer is a disease that is on the SSA – Compassionate Allowances Listing (CAL) for expedited disability benefits.
    It can be hard to realize within ourselves that we aren’t able to return to work as it is a full time job to fight this disease. I went on Social Security at the age of 46.
    9) Finding out what works for you and what doesn’t takes time, be patient.
    10) Have short-term goals, so you always have something to look forward to and rejoice when you meet those goals.

    Hope and Faith will carry you through! Don’t ever give up!
    Happy and Healthy 2012!
    Take Care,
    Lily

    Thank you.
    Lily, thanks for the post, it's good to know that there might be a reason for the cough, Great news on the scan
    Maudsie, thank you for the welcome, it's good to know we are not alone in this.
    Debbie
  • LucyDoodle
    LucyDoodle Member Posts: 23
    #181
    haugy said:

    Good news
    That is terrific to hear Charmi. Welcome back Lily , its great to hear youre scan went well and thanks for posting the tips.
    Murray

    Chemo question and a bit more......
    Steve has just started his 10th cycle of gemzar and cisplatin; our local oncologist is convinced that the cancer will shortly find a way around this chemo and I wondered what other regimes people tried.
    As well as our local oncologist we see a wonderful doctor at Johns Hopkins who though realistic at least seems ready to do battle with the cancer! Our local oncologist does not give me the same impression, it's more like she has read the statistics and Steve is one of them (the dreaded 6 to 9 months numbers). I think more than anything it is a lack of empathy, I am sure she does care but it can be a real downer having a conversation with her! Has any one experienced this and if so how do you deal with it.
    Sorry to ramble
    Debbie

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